Aspirin Damage
I get these killer headaches
I get one everyday
I wake up with a migraine
Since you ran away
Got a load of tension
Burnin' up my neck
Something is wrong with my suspension
So pass those tablets to this wreck
Aspirin damage, Aspirin damage
Kills the pain, destroys the brain
No one told me 'bout Aspirin damage
Sometimes I find myself shakin'
From the medication taken
Oh yeah.
I balance my Excedrin
And Anacins in stacks
I'm a pain reliever junkie
I got a Bayer on my back.
I went to see the doctor
He walked me down the hall
Said "Strip down 'til you're naked
Your suit, your tie and all."
Aspirin damage, Aspirin damage
Kills the pain, destroys the brain
Aspirin damage, my disadvantage
Sometimes I find myself shakin'
From the medication taken
Oh yeah.
Aspirin damage, Aspirin damage
Kills the pain, destroys the brain
No one told me 'bout Aspirin damage
Sometimes I find myself shakin'
From the medication taken
Oh yeah
- “Aspirin Damage” by Alice Cooper
The Head Trauma and The Migraine Headaches-1978-Present
Just a shitty day…
I woke up this morning with a headache. It wasn’t bad: say 1 out of 10 on the pain scale with 1 being mild pain and 10 being the most agonizing pain one has ever felt. Within minutes, the headache is climbing up the pain scale. I need to act soon so this doesn’t get out of control and ruin my day. I go to my medicine cabinets. Hmm…choices… How bad is the headache now and is it getting worse? It feels like it’s getting worse. Toradol! I grab a fresh syringe and a small brown vial of Toradol. I fill the syringe with the contents of the vial. In the bathroom, I lower my pants to expose my thigh muscle. I grab the syringe and a chunk of meat on my left thigh. Well…here goes… 1, 2, 3, plunge. I’m always amazed how little that hurts. I push down on the syringe: hopefully the syringe empties quickly otherwise I’ve hit “something”. I remove the syringe, cover the injection site with gauze and apply pressure- it’s a bleeder. Now the waiting game begins. What’s the headache going to do? Ten minutes goes by. I think the headache has stopped getting worse. I take my 10 pills that I take every morning: most to prevent headaches. These pills do not stop a headache in progress. They are to prevent headache cycles from beginning. The other medications that I take are to abort (stop) headaches once they have started.
I’ve had headaches for the last five days. Why? I have E.S.P. I can foretell precipitation better than any weatherman. I’m a human barometer. And do you know how I know that it’s going to rain or snow? I’m going to get killer headaches until the damn storm starts. That can be days in the making. Thirty minutes have passed. I’ve had several mugs of dark coffee. The headache feels a little better. It’s not gone but it’s at 3 out of 10 on the pain scale. And I wait a while…
Finally, I get motivated. I shower, dress and walk my dog “Baby”. Then it’s off to work. I drive 3.5 miles and I’m at work. I bring to work a bag with two Toradol shots and an even stronger medicine that I also inject called “Xyprexa”. Xyprexa is very sedating. If I take a full shot at work, I’ll be asleep at my desk in 15 minutes. Also, I won’t be able to drive home safely. Usually, I take half of a shot at work. I also carry a medicine container with my lunchtime and dinnertime pills plus extra headache abortive pills. I still have a headache. Because I’m working, the headache jumps up one point to 4 out of 10 on the pain scale. It’s time to try something else. I take a pill, a strong muscle relaxant, called “Soma”. After 60 minutes, the Soma has done nothing. I take another one. Today seems like it is going to suck again like the last 5 days! And I wait a while…
This headache is getting worse. It feels like my forehead and temples are on fire, under great pressure with one spot that feels like a nail is going in and out of my skull. I decide to take another shot of Toradol. I go into the executive bathroom and give myself another shot of Toradol. This one is also a bleeder. I bury the syringe (capped and put back in its plastic wrapper) and medicine vial in the bathroom wastebasket. After about 5 minutes, I leave the bathroom. I go back to my desk. And I wait a while…
By lunchtime, I am desperately sick; I have a pounding, burning, headache, nausea, weakness and my color is a shade of gray. My headache climbs up to 7 out of 10 on the pain scale. I decide to take half a shot of Xyprexa. It’s back to the executive bathroom to inject myself again: this time with Xyprexa. I need to go home but I don’t want to lose my job and I am paid as an hourly consultant. If I leave, I stop making money and risk losing the contract. The Xyprexa seems to have calmed things down. My headache is back to 4 out of 10 on the pain scale. Again, I go back to my desk. And I wait a while…
By 3:00 PM, the headache has shot past its previous pain level to an 8 out if 10 on the pain scale. I call my headache doctor. He calls into the pharmacy some Thorazine with Benadryl. I rush to the pharmacy where I pick up six Thorazine tablets and six Benadryl pills. I take one Thorazine tablet and one Benadryl pill. I decide that I must go home early. I’m very sick and in a great deal of pain. There is no point to staying at work because my head hurts so bad that I cannot concentrate. I want to cry. This time, there is no time to wait!
I rush home and I am greeted by Baby. She’s very happy to see me but I know that I have to walk her soon. Before her walk, I take another Thorazine and Benadryl. The walk is agonizing for me because the bright sunlight just makes my headache worse. And Baby is taking her sweet time just being a dog. When we get home, I go straight for my bed. And I wait until the medications knock me unconscious.
I wake up at 9:00 PM. I’ve been asleep for four hours. My headache is not getting better. I decide to take my last shot of Xyprexa. After the shot, I’m groggy but my head still is agonizingly painful. I decide that I need to go to the Emergency Room. I call a taxi. Thirty minutes in the taxi and $25 later, I am at my headache doctor’s primary hospital. When I arrive, an Emergency Room staff member notifies the doctor on call from the Headache Clinic that I am in their Emergency Room. The doctor recommends intravenous medications including: Depacon, an anti-seizure medicine, a whopping shot of Benadryl and Dilaudid, a powerful pain killer. After two hours in the dark with ice on my head, my headache is down to 1 out of 10 on the pain scale. I am released from the Emergency Room. A taxi takes me back home where I pass out and pray that tomorrow will be better than today. It is hard to believe this but my headaches can be even worse than this one. There are no guarantees. Today’s headache cost over $1000 in medications, hospital treatments, lost wages and travel expenses. And I wait until tomorrow…
So why does this happen?
When I was in fifth grade, my family rented a condominium in Florida for our vacation. We always liked Florida: Grandparents, Aunt and Uncle and first cousin, NASA, Disney World and Monkey Jungle. Who could want more? We were there only a few days when my parents found me unconscious on the bathroom floor. They were woken up by the sound of my head hitting the bathroom floor. The next day, I was unresponsive, lethargic and had cognitive problems. My parents took me to a pediatrician. We were from out of town and this doctor could have easily given me some antibiotics and sent us on our way. He didn’t. After hearing about my fall the previous night, he said, “go to Holy Cross Hospital now and I will meet you there tonight”. That’s the last thing that I remember and only vaguely. My memories of the pre-fall part of our vacation are sparse. I only remember small flashes of memories of the vacation, in general.
I have no recollection of being admitted to or having any test run at Holy Cross Hospital. I fell into a coma. When I awoke, my eyesight was blurry but it came into focus. The first thing that I saw clearly was a crucifix with Jesus on it. I thought that I had died, that I was in heaven and I was the wrong religion- Jewish. Initially, I was more than a little concerned about this potential theological conflict. Nonetheless, I really had to use the bathroom. I noticed a commode in my room and I raced to it. By that time, several nurses had rushed into my room. They told me not to move. It was too late: I was on the commode. I had no idea where I was, where my parents were, what had happened to me and I was overwhelmingly mystified at my predicament.
I had suffered from a subdural hematoma in my right pre-frontal lobe. Put simply, I had a blood clot the size of a quarter directly above my right eye and it was pressing against my brain. The doctors were never sure if the fall caused the blood clot or if I had an aneurism, which caused me to have the fall. They had two options: operate and remove the blood clot or use steroids to dissolve the blood clot. The opted for the latter, probably because it was less invasive.
I was moved from the observation room to a regular room. My mom stayed with me in Florida and my dad went back to Chicago to tend to his business. He did come and visit frequently. Every morning, I woke up as I heard the distinct and comforting sound of my mom’s keys jingling as she walked down the hall. She stayed with me everyday.
The test the doctor’s had to run to see what was happening to my brain were not painful but they took forever to complete. Today, a CAT scan can be over in minutes. With the computer power in 1978, a CAT scan could take hours. Every test took hours and I had to hold my head perfectly still the entire time. In reality, this meant that, inevitably, I would move slightly and the multi-hour test would have to be repeated. The good news was that the blood clot was shrinking.
At that time, doctors had two misconceptions about my condition. First, they had very little knowledge about what the part of my brain that was affected actually did. They described it as the “silent part” of the brain. Second, the thinking at the time was that a head trauma could change the physiological structure of the brain but not the complex chemistry of the brain. Well, they were totally off the mark. Today, it is known that the right pre-frontal lobe has much to do with personality. In hindsight, I had immediate changes in my personality after the fall. Second, it is known that a severe head trauma can cause chemical changes in the brain. I was, for all intensive purposes, a different person once I had the blood clot. My brain structure had changed and my brain’s chemical make-up had changed. There were subtle differences in me, that were easy to overlook, but I was different. At the time, Star Wars was all of the rage. Like a good fifth grader, I had most of the Star War’s action figures and an ever-growing set of Matchbox and Hot Wheel cars. Prior to my head trauma, these toys were my primary forms of entertainment. After I had the blood clot, none of these toys made any sense to me. I didn’t know what to do with them. I remember having fun with them but I couldn’t remember why. I never played with them again.
My time in the hospital went by pretty quickly. Finally…Success! After two months in the hospital, the blood clot had dissolved. I was free to go back home to Northbrook. I looked different. I had a fat “moon face” from all of the steroids. All of the kids in the neighborhood ran to my house when they heard I was back. One neighbor commented immediately that “that bump on the noggin’ has changed you”. I was upset by his comment but it was very astute coming from another child. He was correct. I had changed. The problem was that I did not realize the changes right away nor did my parents.
My parents were being very overprotective of me. They didn’t want me to exert myself physically and they had put the fear of G-d into me regarding any bump or tap to the head regardless of how minor it was. I couldn’t play baseball as long as the neighborhood kids because my parents did not want me to take over exert myself. I was at a birthday party where we all went bowling. My mom made certain that I only bowled one game. The other children were allowed to bowl three games. At the party, someone came up to me and hit me on the head with some rolled up papers. I began to scream, “Are you trying to kill me? Are you trying to kill me?” I was genuinely scared that my head would cave in at any moment. I know that I freaked out a lot of the kids because I got hysterical over a little tap on the head. To this day, people who know me well know not to touch or hit my head.
Sixth grade was just around the corner. I had to go see the school district’s psychologist for some psychological evaluations before I could go into jr. high school. My I.Q. tested slightly higher than before the blood clot. The psychologist told my parents that I would be a “management problem” and that I should start seeing him on a regular basis. To this day, we still don’t know what a “management problems” is. Did it mean that I would become unmanageable? Or did it mean my ability to manage would be compromised? I think he meant both. My parents thought that this psychologist was just trying to drum up business and that I was fine. Big mistake!
Sixth grade went well with one exception. I started to develop very extreme and regular headaches. But my grades were good and my peer group hadn’t changed that much from fifth grade. Seventh and eighth grades were bona fide disasters. My headaches got worse. My group of friends changed for the worse. I smoked pot and got drunk for the first times in seventh grade and was known around the school as a stoner. By eighth grade, I used to get high almost everyday before school. I thought this was cool. At least people knew me. Obviously, they knew me for all of the wrong reasons but I thought I was super cool. I also started my first round of cigarette addiction. So, by eighth grade, I was smoking tobacco and marijuana daily. (I think the marijuana may have helped my newfound headaches. Marijuana is an excellent headache abortive and should be legal for medicinal purposes. Nonetheless, I was too young to be using that as self-medication.)
Now my parents took me to a different psychologist. Naturally, I did not tell this doctor anything about my aberrant behavior. He knew that I smoked cigarettes. My parents figured that they started smoking at about the same age that I had. Also, they’d prefer to have me smoke in the house rather than at the local mall for the whole world to see. I denied doing anything else when the psychologist enquired about my activities. That rouse went fine until one of my “friends” stabbed me in the back and told the school Principal that I had drugs on me. And I did. Ironically, he was the first person I smoked pot with. There’s no honor among thieves. The shit hit the fan. The Police came to the school to confiscate and process my stash. My parents came to school and beat the crap out of me in the Principal’s office. We went home and I gave all of my dope and paraphernalia to my parents. They told me that the Northbrook Police Department was coming over with a dog. This, of course, was a total fabrication. I had to go see the Juvenile Detective Officer at the Northbrook Police Department. (Years later, I would become friends with this Detective’s son. He was a party animal and a total riot.) The Detective told me that if I ever did this again, I was off to a juvenile lockup. I kind of figured he was full of shit but I knew it would be in my best interest not to get in any more trouble.
Jr. high school was a complete disaster. I did everything wrong and it was an absolute embarrassment to my family and me. I cringe, today, when I run into people that only knew me in jr. high school. Plus, I did not develop the study skills that I would need to succeed in a highly competitive high school.
My changed behavior- from parents’ dream to parents’ nightmare- was due to the blood clot. I have no doubt that my personality changed radically after the blood clot. I was different. I wanted to be grown up but I was just still a child. The old activities that I used to find amusing were no longer amusing to me. I was looking for something new. Unfortunately, that something new was pot. Doing drugs and making sure that the whole school knew what I was doing made me feel like an adult. I was impervious to the fact that the other kids saw my behavior as pathetic, many of my old friends deserted me and I was acting like I wanted to get caught. I know my life events would have been different if I had not suffered from the head trauma. I should have been in counseling with the school psychologist from the first day of jr. high school. I was not. By the time I saw a psychologist it was too late.
Worsening headaches plagued me. My pediatrician diagnosed me with migraine headaches in eighth grade and recommended a neurologist for me to go see. This started a life-long battle with migraine headaches. I’ve had so many neurologists that I can’t name them all. Nothing really helped much but I was definitely getting low- to mid-grade migraines with an occasional high-grade migraine during jr. high school. The headaches became worse during high school. They leveled off in college. Then the headaches became worse as an adult in the working world. To date, they have perpetually worsened over time.
For those that are blessed to be free of real and medically diagnosed migraine headaches, you should thank G-d. Migraines are not just a headache. Most people get headaches now-and-again. Usually, two Excedrin Extra Strength pills do the trick for most people. With migraine headaches, the over the counter medicines are a joke. In fact, migraineurs (people who suffer from migraine headaches) who try and self-medicate themselves abuse over-the-counter painkillers that only make their headaches worse.
Today, my migraines are not great but they are better controlled. I have a little headache almost everyday and a major headache twice a week and a massive headache about every six months. Daily, I take 15 different pills just to prevent migraines from occurring. I have about five drugs to stop headaches in progress. When those don’t work, I go to the Emergency Room. If the headache lasts weeks, I end up being hospitalized. Migraines are devastating. They are far from normal headaches. At best, they are curse. They can ruin careers, marriages, friendships and a migraineurs’ lives in general. Living in pain and fear of potential pain is no way to go through life. This is the reality for a migraineur. Migraine headaches are a leading reason for suicide in adults.
If your co-worker tells you that she or he has a migraine headache, show compassion. Migraine headaches, like diabetes, are invisible. You might not know that someone is a migraineur unless he or she tells you. The same goes with diabetes. But they are both very real. Many people, especially in a work environment, get upset when a migraineur has to leave work early or misses work entirely because of a migraine headache. The outward signs of a migraine headache are subtle or nonexistent to the untrained eye. But the migraineur is suffering in a way that one can only understand if one is a migraineur. Take his or her word for it- he or she feel like they are on death’s door and you, as a non- migraineur, don’t have the faintest idea what hell this person is going through.
Saturday, July 19, 2008
Wednesday, May 21, 2008
Guillain-Barre Syndrome 1984-1985 (or “Please Straighten My Leg”)
Comfortably Numb
Hello.
Is there anybody in there?
Just nod if you can hear me.
Is there anyone home?
Come on, now.
I hear you’re feeling down.
Well I can ease your pain,
Get you on your feet again.
Relax.
I need some information first.
Just the basic facts:
Can you show me where it hurts?
There is no pain, you are receding.
A distant ships smoke on the horizon.
You are only coming through in waves.
Your lips move but I can’t hear what you’re sayin.
When I was a child I had a fever.
My hands felt just like two balloons.
Now I got that feeling once again.
I can’t explain, you would not understand.
This is not how I am.
I have become comfortably numb.
Ok.
Just a little pinprick. [ping]
There’ll be no more --aaaaaahhhhh!
But you may feel a little sick.
Can you stand up?
I do believe its working. good.
That’ll keep you going for the show.
Come on its time to go.
There is no pain, you are receding.
A distant ships smoke on the horizon.
You are only coming through in waves.
Your lips move but I can’t hear what you’re sayin.
When I was a child I caught a fleeting glimpse,
Out of the corner of my eye.
I turned to look but it was gone.
I cannot put my finger on it now.
The child is grown, the dream is gone.
I have become comfortably numb.
– “Comfortably Numb” by Pink Floyd
Guillain-Barre Syndrome 1984-1985
(or “Please Straighten My Leg”)
July 14, 1984, the summer between my junior and senior years in high school, I woke up in the morning and the middle toe on my left foot was numb, like pins-and-needles. I had a deep sense of foreboding. This had never happened to me before. Throughout the course of the day, the pins-and-needles numbness spread to my hands and feet. We went to see my doctor. He had no idea what was happening to me. My parents called Children’s Memorial Hospital in Chicago, IL. My parents were told that if this became any worse, rush me to Children’s Memorial Hospital. I tried playing my drum set but I kept dropping the drum sticks. I took a nap. I woke around 3:00 PM. I was unable to walk. My right leg kept giving out under me. I tried to eat but I was unable to swallow. After I crawled to my bedroom to pick out the perfect Grateful Dead bootleg tape to listen to on the ride to the hospital, my parents helped me into the car. We made it as fast as we could, in rush hour traffic, to Children’s Memorial Hospital. Some of Children’s Memorial Hospital’s doctors and nurses were waiting for me with a wheelchair. I was rushed off. I assumed whatever I had contracted would require surgery or some strong medicine. I assumed that I would be out of the hospital and I would be enjoying the rest of my summer break from school in about a week.
As soon as the doctors got me on a gurney, a urinary catheter was inserted. The doctors did not tell me what they were going to do and I screamed in pain. I thought they had cut off my favorite part of my body (and we had just become friends). In fact, they had inserted a tube in my penis to drain my bladder. The catheter would remain inside of me for two months.
I was heavily sedated: an unpleasant feeling complete with hallucinations, paranoia and being semi-conscious but very out of touch with reality. There was no separation between dreaming and waking reality. My perceptions of the first week were very frightening and troubling. I was convinced that the doctors were trying to kill me: a fear that would linger for at least a month. They performed a spinal tap on me and stuck IV needles wherever they could find a good vein. Based on their observations and tests, I had a rare neurological disorder called, “Guillain-Barre Syndrome”. The odds of getting this syndrome are about one in fifty thousand and I had the worst case that they had ever seen at Children’s Memorial Hospital. (And I never win anything!) From the time I woke up with numbness in one toe until the time that I was completely paralyzed and on a respirator was less than 18 hours! The doctors told my parents that they should call their clergy. It appeared that I was not going to live through the night.
The first week, or what I believed to be a week, was out of a horror movie written by Hitchcock and Hitler during an all night drinking binge. I had no idea what was going on around me because I could only stare at the ceiling. In order for me to see, they had to tape open one eye. My eyelid muscles and my eye muscles were paralyzed too. If they had taped both eyes open, I would have seen double.
Everything hurt! My major joints felt like they were completely hyper-extended and my feet felt like they were being pulled barefoot over broken glass and asphalt. Occasionally, I would get strong shooting pains up-and-down my legs. Hot and cold flashes were common. I was suffering terribly with unbearable inhumane pain. The agony was like nothing I could image was even possible. I knew death was better than this. I prayed that I would die to end this nightmare. All I wanted was for the respirator to fail. I figured that my life was over and the sooner it ended the better. It was in a state of pure torture. I was told that I would get better but, at the time, I found that hard to believe.
I received relief was from shots of Demerol every six hours. At first, it worked great and I could sleep. Eventually, that effect wore off. I was awake for nearly a week- hallucinating, sleep deprived, paranoid and in constant physical and mental torment from being entirely paralyzed. The only things I could move were my eyebrows up-and-down, which meant “yes”, and my lips side-to-side, which meant “no”. I was too sick to form words with my mouth for someone to lip-read. If I wanted to say something, it had to be spelled out by the nurse: “a, b, c, d…” When the nurse got to the letter I wanted, I would lift my eyebrows. Then he or she started again, usually from the beginning of the alphabet, which I preferred. Occasionally, a nurse would say the letter I wanted. I’d lift my eyebrows. The nurse would note the letter but he or she would not start back from the beginning of the alphabet but, rather, start the alphabet, again, where he or she left off. Suppose the letter I chose was “R”- if I needed an “A” next, I’d have to wait for the nurse to go through the remainder of the alphabet to get to “A”. That seriously pissed me off but that was my only way to communicate! Communicating like this was slow, cumbersome and very ineffective. Can you imagine how long it took to spell out “scratch my nose”?
Some doctor told me that, “there was no documented pain with Guillain-Barre Syndrome therefore you might be depressed but not in pain.” Asshole! I really wanted to punch this jerk but I could only remain motionless. Today it is known that Guillain-Barre is very painful. Unfortunately, this demonstrates how little the doctors knew about Guillain-Barre Syndrome. Their knowledge has not made great leaps forward because it is such a rare syndrome. When I had it, they knew close to nothing. The doctors knew how to diagnose it but their cure was to have me lay in bed and I would slowly get better.
By the end of my first day of hospitalization, I was totally paralyzed; I had multiple I.V.’s in each arm, a urinary catheter, a respirator, a feeding tube down my nose into my stomach and a “tap” in my foot so the staff could draw blood without having to stick me with a needle. The most irksome part of it all was when the I.V. pumps’ alarms would all go off at the same time. Being helpless, these alarms were startling, very irritating and it seemed to take the nurses decades to turn off the alarms. That first week was really rough. My Neurologist and the doctor who was the Head of Intensive Care clashed constantly. There was an experimental treatment called, “Plasmapheresis”. My parents wanted me to have it, my Neurologist wanted me to have it but the Head of Intensive Care said, “No”. Today, Plasmapheresis is the standard treatment for Guillain-Barre Syndrome. If I had had it, my hospital stay would have been cut in half and my residual deficits would be less.
Very early in my hospitalization, my blood pressure shot up dangerously high. My Neurologist and the Head of Intensive Care agreed, for maybe the first and last time, that a CAT scan was in order. During the scan, I thought I was lying in a drainage ditch in a local Northbrook, IL forest preserve. I thought my arms were swinging around wildly and I had no control over them. I just kept punching the air. I could see the trees, the road and the drainage ditch and I even felt wet from the water. I thought I was waiting to be picked up by someone who would help me get away from the doctors who were trying to kill me. I was totally oblivious to the actual CAT scan and I have no recollection of it. Afterwards, I thought I had been transferred to another hospital. I had not. I was just returned to my bed in Intensive Care. In time, I became so confused that I thought that I had been in five different hospitals. It turned out that I had developed a blood clot in my lung. I was put on a blood thinner: a dangerous necessity.
At first, being paralyzed felt like my body was surrounded in a lead case and I was not strong enough to move it. Eventually, paralysis felt like my body was totally unattached from my brain and will. The torture of Guillain-Barre Syndrome is that your mind becomes fine and your body does not work. Being paralyzed is a completely disorienting state. I was lying in bed staring at what I thought was a door. But if I was lying down, why was there a door in the ceiling? I thought that if I could just make it to the door, I would be well again. I swear I saw the door open and close. Even though I was bedridden, I felt like I was standing up and leaning against a wall. This would explain the door. However, it was not a door that I was looking at but a rectangular light fixture and the track on which the privacy curtain was hung. To me, the curtain track was the outside of the door and the light was a window in the door. I never made it to the door.
Things actually got worse. I asked my nurse to see if there was something in my eye. She got a wash cloth and wiped out what was in my eye. She had a look on her face somewhere between “no way” and “holy shit”. It was turned over to the lab for a biopsy. It turned out to be fly larvae. While I was totally paralyzed, a fly had planted her eggs in my nose, mouth, ears and eyes. I was so sedated that I vaguely remembered a fly landing on my nose and there was nothing I could do about it anyway. I was the perfect place to lay eggs- warm, moist and motionless. I was rushed to the operating room to remove the parasites. My parents where “invited” to meet with the president of the hospital. Obviously what had happened to me were grounds for a lawsuit. My parents assured the president that they were not going to sue the hospital and that all they wanted was for me to get better. I guess that is easier to say when you don’t have bugs coming out of you.
At the beginning of my illness, I received many get well cards- some from people that I did not even know knew me. After a week or two, the cards became fewer and fewer. I also had visitors. The first week, no matter how hard my parents tried to prepare my visitors for what they were about to see, no one was really prepared. I had blood and cuts on my face. My hair was a mess. I smelled bad. I was attached to six machines. I had several tubes going into me. I had one eye taped open and I was totally paralyzed. I appreciated the kindness of these friends to drive from Northbrook to Chicago just to see me. However, I didn’t want to be seen in this condition and I couldn’t talk anyway. Later, I found out that many of my friends passed out in the visitor’s lounge after seeing me. (I told you that I smelled bad!) Some people never returned or they visited me once I was out of Intensive Care. My friend Mike, now a Police Officer, came to visit me frequently. He was made to handle really gross stuff. He always reassured me that I would get better and to hang on just a little longer.
My parents did not tell my sister, Jodi, what had happened to me because she was away at summer camp. However, the Northbrook/Camp Chi (Delevan, WI) gossip mill was fully operational. She found out that I was very sick. Actually, at first, she heard that I had died. In hysterics, she called my parents and they told her the truth. I’m not certain when she came home. She may have come home at the end of the camp session or she may have come home immediately. I don’t know. The first time she saw me she started to cry at my bedside. She was reassured that, in time, I would get better no matter how bad I looked. My parents did not tell any of my grandparents what had happened, either. This kind of news would easily kill octogenarians. When I had improved, my parents eventually told my grandparents about the Guillain-Barre Syndrome. Two of my grandparents lived in Florida and it was just too hard for them to fly to Chicago. My other grandmother lived in Chicago. Eventually, she would come by to visit me. She was starting to wonder why my regular phone calls to her had stopped abruptly.
Slowly, after about two weeks, I began gaining back some random muscle movements. I could open my eyes. I could form words with my mouth and some people could lip-read what I was saying- no more spelling out the alphabet. However, because I was on a respirator, I could not make any vocal sounds. My sister was great at lip-reading. I did not want her to leave my bedside because she understood what I was saying better than anyone else. I could also lift my left shoulder off the bed a little: not very handy but a sign of improvement, nonetheless.
I had Physical Therapy everyday. Basically, the Physical Therapists were concerned that my muscles would contract in the wrong positions- feet pointed straight to the ground and my arms and hands inwardly curled. They made braces to keep my muscles properly aligned. The braces for my feet were very uncomfortable and I hardly wore them. My feet and lower legs were incredibly sensitive. The breeze from someone walking past the foot of my bed caused intense pain in my feet. The only position that felt good was with my feet propped up on some pillows from the knees down. This made my neurologist nuts. Every time he saw me do this, he took the pillows away. I still don’t know why. It felt really good when someone would move my arms and legs back-and-forth. I wished that someone had invented a machine to keep me in a slow, regulated, constant movement. It felt so good to move!
Because I was still on a respirator, it was important to have daily “breathing treatments” whereby a Respiratory Therapist would pound on my chest with black rubber suction cups. I think this was to prevent pneumonia. This sounds painful. In fact, this felt great. I usually was asleep by the end of the treatment. This was one of the few things that let me sleep. Sleeping was a major issue. I would stay up for days because I was so uncomfortable. Another technique that helped ease the pain was to have someone pound or chop gently on my abdomen. I think that it aided digestion.
Four weeks into my illness, I gained slightly more and more movement. I was able to bend my left leg up towards my chest with my knee pointed to the ceiling. However, I did not have the muscle strength to put my leg back down onto the bed. A frequent request of mine was to, “please straighten my leg”. I very slowly got better and better. These were small leaps forward but every bit counted. Over the weeks, I could lift my arms off the bed a little but I had no control over my wrists and fingers and I could move one leg a little but not my feet or toes.
The doctors tried a new approach to dealing with my pain. They put me on Tegretol. It is used to treat seizures, nerve pain and bipolar disorder. I had serious nerve pain. The Tegretol worked pretty well. The shooting pains nearly stopped. While I was still in a great deal of pain, this medicine helped enough that I noticed it working.
I was still on a respirator. Getting off the respirator was a crucial landmark for me being moved to a regular hospital room. I slowly began to breathe on my own. They could tell that I was breathing because the respirator was set for 10 breaths per minute. The respirator measured every breath and it turned out that I was breathing two breaths per minute unassisted. When on a respirator, frequently, it felt like I was not getting enough air; like I was drowning and gasping for air. It was mostly psychological but the nurses would add on a breath a minute to stop the sensation of starving for air. After two weeks on a respirator, which was inserted down my throat and into my lungs, the doctors had to operate to put in a tracheostomy tube. A tracheostomy tube is a 2- to 3-inch metal or plastic tube that keeps the stoma and trachea open. A tracheostomy tube dose not let air go over the vocal cords. So I could not make a sound. Some great genius had invented a tracheostomy tube that allowed air to go over the vocal cords giving one the ability to talk. Naturally, they picked me to be a guinea pig. I guess that I was the sickest one in Intensive Care so they, logically, chose me. There were a few problems. First, the hole in the neck is called a stoma. The stoma can be different sizes depending on the age and size of the patient. The experimental tracheostomy tube was larger than my stoma. Have no fear. They took out the proper fitting tube and jammed the extra large tube right in. I heard the anatomy of my throat crack and break but they got that sucker in. We then came upon the next problem. In order for the new tracheostomy tube to work, a secondary tube had to be covered by a finger. I could only lift my arms a little bit. Covering the tube with my thumb was impossible. So someone else covered the tube. They told me to try and speak. When I did, gallons of mucus came pouring out of my mouth and nose (It sounds gross but it felt pretty good. I had not sneezed in over a month.). After all of that, the piece of shit did not work!
It took a total of 59 days until I was able to breathe unassisted. They kept me in Intensive Care for a few days longer just in case I had a relapse. I was finally ready to be moved to a regular hospital room. I was probably 85% paralyzed still but I could breathe. Also, I could eat. The entire time I was in Intensive Care, I did not eat or drink anything. I was being fed through a feeding tube. I craved an orange pop. Ironically, this is not my favorite pop but if I did not get an orange pop, a mental breakdown was surly to follow. When I was admitted to the hospital, I weighed 175 pounds. When they moved me from Intensive Care to a regular hospital room, I weighed 135 pounds. All of that weight loss was from my muscles atrophying. In total, I was in Intensive Care for two months.
Being in a regular room was a treat compared to Intensive Care. I still had daily Physical Therapy but they would take me, on a gurney that folded into a chair, to the Physical Therapy Department. I had more and more visitors because I looked more like a normal person than a sad soul who was being kept alive by machines. The pain was at a manageable level and I did not have any I.V.’s in me. My purpose in the regular room was to wait until I was strong enough to be admitted to The Rehabilitation Institute of Chicago- one of the best rehabilitation hospitals in the country. Basically, I ate, watched too much “I Love Lucy”, had Physical Therapy and got a thorough sponge bath everyday. It became pretty repetitive. Eventually, I could push myself up to a sitting position but I had no chance, then, of walking.
There was a two-year-old African American boy who was a long-term patient: his parents could not take care of him so he lived at the hospital. His name was Ronnie. They would take me down to play with him. He was adorable. He had a tracheostomy tube but he was not on a respirator and he was unable to walk or talk. He also has six finger on each hand and six toes on each foot! He had an adorable little smile when I came to visit him. We did as much playing, as our disabled states would allow. In between my visits, it was regular practice to take Ronnie outside to play on a swing set. One day, a nurse turned her back on Ronnie. Ronnie’s head fell forward and his chin covered his tracheostomy tube. He couldn’t breathe. He ended up brain dead! I went to see him after the accident and he was motionless. He was unresponsive. I could not believe what had happened. Eventually Ronnie died from this trauma. The lesson I learned was not to become too attached to other patients: many of them would die. There was a boy around my age that I would play checkers with. I was pushed to his room and there was a group of crying adults. My checkers friend had died over night. I also had a roommate who was deemed, “terminally ill” and the doctors sent him home to die. I may have been predominantly paralyzed but most people (95%) survive Guillain-Barre Syndrome. I figured that I was out of the woods. In fact, the thought never crossed my mind that I would not get better. After two month in regular care room and a grand total of four months at Children’s Memorial Hospital, I was ready to go to The Rehabilitation Institute of Chicago. I was taken to The Rehabilitation Institute of Chicago in an ambulance. Things were about to get very different for me.
The Rehabilitation Institute of Chicago
The Rehabilitation Institute of Chicago (“RIC”) was a completely different experience from that of Children’s Memorial Hospital. Every patient there was disabled but few, if any, were going to die. When I first arrived at RIC, I was put into my room which I shared with two to three other patients. I met with a rehabilitation doctor. She explained to me that when a muscle reached a certain strength, I could use it. If it was below a certain strength, I was not to use it. Using a muscle before it is strong enough can permanently damage the nerve and muscle. She said, “If you do what I tell you to do, you will walk out of here.” Ironically, this doctor was dismissed from RIC for plagiarizing on some research she claimed to have done. I quickly went under the care of a different doctor but his message was the same. Essentially, I was told not to push myself unless a Doctor, Physical Therapist or Occupational Therapist said it was all right to use a muscle or group of muscles. I had a motorized wheelchair so that I would not overuse my muscles. It went pretty fast, too.
A day at RIC was very structured. We were all woken up- too damn early- put in our wheelchairs, had our morning bathroom needs taken care of- faces washed, our teeth brushed, hair combed, and bowel and bladder care, etc. Then we were dressed. We were wheeled out to the dinning area on the floor and we were literally fed breakfast if we could not feed ourselves. Frequently, it felt like we were always rushing in the morning. Then the fun began. Everyday, I had Physical Therapy, Occupational Therapy, a little chat with the shrink and Aqua Therapy. It was exhausting. It does not sound like much but going to sleep at night was no problem. There was a pool in the building filled with really warm water. This was used to loosen very stiff muscles. I really loved Aqua Therapy. My therapist was a looker and she wore a yellow see through bathing suit- seriously! She had nothing to hide. By the end of my sessions, there were always five male staff members, just hanging around the pool- to be helpful, of course. Once I got out of the pool and lost my woody, they put me on a tilt board to put pressure on my feet so they could be stretched to a 90-degree angle. I had suffered from foot drop where my toes pointed to the ground. They had to loosen my foot and leg muscles otherwise I would not be able to walk. This routine continued day-in-and-day-out. Around noon, we were fed lunch and dinner was served around 5:00 PM. Most patients needed help eating. For that matter, most patients needed help with everything. I discovered some Soul Food that would become a family staple at Thanksgiving- Sweet Potato Pie. Ms. Johnson gave my mom her family’s recipe. At Thanksgiving we still call it “Ms. Johnson’s Sweet Potato Pie”. In the evenings, we were put on a gurney or in a shower-chair and we were given a shower usually by 23-year-old, women nurses. I did not complain because I was a dirty boy. (I still am.) We were dressed and the nights were ours. There was only one TV set on the floor. The thinking was that many of the patients would be permanently wheelchair bound. Therefore, these patients had to get used to socializing in their wheelchairs. They did not want patients to stay in their rooms cut off from other people. This is how they where going to stay and they needed to get used to it. (I was told that after about two years, patients with paralysis from spinal cord injuries get used to their conditions.) More than a few arguments broke out over what garbage we were going to watch on the TV set.
The best part about RIC was on the weekend. Because I had caretakers, I could go home on Friday nights and return on Sunday nights. I had not been home in over four months. Once I was at RIC, I went home every weekend. I had to be transferred from my electric wheelchair into the car. When I got home, I was transferred into a manual wheelchair. (The electric wheelchair weighed a ton.) I slept on the first floor couch in our living room. Many people came by to visit me while I was at home. I had just enough manual dexterity to work the remote control for the TV set. Unfortunately for my father, he was in charge of my bowl and bladder needs. I was so used to people wiping me that it did not even seem abnormal. My father, with his sense of humor, would say things like, “did you eat an orange?” All the while he did this with a look on his face like he was going to vomit. Some day I’ll probably return the favor.
During the weekdays, there was daily educational tutoring. I went to a few classes and I realized that there were 17-year-olds there that could not do long division and had great difficulty reading. This was not from their illnesses. This was from really bad educations. If I went to class, I thought it was a waste of my time and more importantly a waste the tutor’s time. I assumed that I was going to go to college in a year. I tried to make a deal with the tutor. I said, “I’m wasting your time. I’m college bound. I will come to tutoring sessions if you let me help you tutor the other patients. I’ll be your aide.” For some unknown reason, the tutor turned down my offer. (I probably came off as jerk but it was true.) I was academically ten years ahead of the other patients that were my own age. It was really pathetic. Now I know why kids get into gangs. They cannot read nor do math. They do fifth grade work- poorly- when they are 17. They have no chance of graduating from high school and the prospects for college are laughable. What else does that leave them with? They are uneducable and unemployable. I spent the rest of my days at RIC trying not to be seen by the tutor. The other patients needed her help much more than I. So I would go and hide when it was class time. Usually I’d read some porno. There was plenty of that to go around- not that I had the manual dexterity to do anything fun.
For most of my time at RIC, my roommates were Timmy and Rick. We were the same ages. Rick was a high-level quadriplegic. He dove in a river right where it said “No Diving”. (don’t ever do that) He broke his neck and could not move anything below his chest. Rick was permanently disabled. Prior to his accident, Rick was a Black Belt. Nonetheless, he was a nice guy. Timmy was, for the most part, physically fine. He could walk and he was discharged before Rick and me. He was in a car accident and he was a passenger in the back seat. In spite of everyone in the car being drunk, Timmy had the good sense to put on the lap belt while he was in the backseat. The car hit a railroad-crossing pole. The seatbelt broke Timmy’s back but did not cause any permanent spinal cord injury. He was very lucky and probably won a big lawsuit from Ford. (If he got any money, he probably shoved it up his nose.) Timmy was also maybe the least bright lightbulb in the chandelier. His speech was kind of slow and his thoughts came just as slowly. This was not from his injury but from a tiny piece of brain enigmatically stuck into his head. As we would find out, stupid people do the funniest things and we were surrounded by stupid people. Rick and I knew our stays at RIC would be hard work but very entertaining.
Rick and I were physically at about the same level- quadriplegics. The main difference is that I was going to improve and Rick was going to have to cope for the rest of his life in a wheelchair with adaptive devices. There was no hope of Rick improving much. Timmy could walk and use his legs, hands and arms. He was at RIC because his feet dragged a little which was a correctable minor problem. Rick and I were lying, mostly paralyzed, in our respective beds. Timmy was sitting on his bed drinking a quart sized Styrofoam cup of grape juice. Timmy’s mom- a former stripper turned Born Again Christian and therefore intrinsically a pain the ass- and Timmy were having an argument. Timmy said (say it slowly), “Mom, if you don’t shut the fuck up, I’m going to throw this grape juice at you!” Timmy’s mom said, “Timmy, I can always pray for your soul.” As she was getting down on her knees to pray, Timmy threw his massive cup of grape juice at his mom. BAM! Dead ringer… right in the head… Grape juice went everywhere: all over Timmy’s mom, all over Timmy, all over Timmy’s bed and all over the window. She ran out of the room crying and screaming something about Jesus and The Day of Judgment. We all got hysterical. After a short period, it was time for the investigation to begin. Rick and I were incapable of throwing a drink. Several nurses’ aides came into our room. The three of us were still giggling. One of the least bright nurses’ aide said, “Who threw the drink?” Hmm, this is a toughie. Was it quadriplegic 1 (Rick) or quadriplegic 2 (me) or was it Timmy- the only person in the room who could have possibly had the physical strength to throw a large cup of grape juice? The nurses’ aide said, “Well, if you’re not going to tell me…you’ll all have to clean it up!” Rick and I looked at each other with the same look: “Is this woman retarded?” We were all quiet. No one was going to tell on Timmy regardless of how self-evident it was that he threw the grape juice. More nurses’ aides came into the room. If Rick and I were going to “help” Timmy clean up the grape juice, Rick and I had to be put into our wheelchairs. This took more nurses’ aides than was in the original investigation party. So we went from two nurses’ aides to needing four nurses’ aides. They wheeled Rick and me over to the window. On Rick’s lap they placed paper towels. On my lap they placed a bucket of soapy water. I put my arms around the bucket the best that I could. Then Timmy took a towel from Rick’s lap, dipped it into the bucket on my lap and started cleaning the window. The nurses’ aides, realizing we were on task, left us alone to clean up Timmy’s mess. We couldn’t believe this non-sense. Rick and I added no value to the clean-up process and this was hardly punishment. We were tables! We just had to sit there and watch Timmy work. The more Timmy cleaned, the quicker we escalated from giggling into outright laughter at the blatant stupidity of the event.
Disability knows no race, gender or socio-economic class. On our floor, which was for pediatrics (infants to age 18), there were patients from all walks of life. It did not matter the differences between the patients. We were all disabled which was an overarching similarity. The other major difference was how people became disabled: there were rare disease like I had, failed attempted suicides, head traumas, car accidents, scuba-diving accidents, falls, motorcycle accidents, broken necks from diving where it said, “No Diving”, swimming accidents, children who ate their parents’ stash of drugs and had brain damage, and general stupidity, etc. We all had to get along because we were all in the same predicament- disabled. This commonality negated our differences. Everybody comingled without regard to gender, race or disability. The only factor that divided us was age.
The only other person on my floor with Guillain-Barre Syndrome was a Hispanic guy my age named Juan. I was excited to meet him. We were about equally disabled. He was supposedly a gangbanger from Aurora. None of his gang buddies ever came to visit him. His mother only came to visit him once a month. He never talked about his father. I felt bad for him but Juan found many ways to vent his anger from his gang members and family alimentation. Juan was a nightmare. He never let go of the gangbanger mentality and he wanted to show everyone how tough he was- Guillain-Barre Syndrome or not. He never became aware that at RIC, you leave the gang non-sense at the door. When I first met Juan, he was in a single room which was very unusual, lying on a mattress on the floor which was also very unusual. He had no bed. He was also secured firmly to his mattress because he kept trying to jump out from the mattress in order to start fights to prove how tough he was. He would literally crawl on the ground to get to the person who angered him, which was pretty much everyone but me. Finally, he had full-time nurses’ aides in his room watching him to make sure that he did not misbehave. Juan’s behavior was counter-productive to him getting better. In order to recover from Guillain-Barre Syndrome, one had to take it easy. He was far too active and violent to make a smooth recovery. Needless to say, he was not liked by the staff, which was a big disadvantage because he counted on these people to help him with everything. Also, the other patients kept away from him. He reminded everybody that, “he was in gang in Aurora”. No one cared about this except Juan. In tutoring class, I found out that he could not read nor could he do math. He was prone to violence: the perfect low-level gang member. I’m not even sure that it was true that he was in a gang because he had no gang tattoos and no one from his sacred gang ever came to visit him. What a nice bunch of friends.
I progressed slowly. My feet were finally at ninety degrees so I could be fitted with ankle-foot-orthoses: basically a plastic leg brace that supported the foot from underneath and stopped below the knee. These were needed because I had foot drop. I actually couldn’t move my foot in any direction, so the ankle-foot-orthoses kept my foot and lower leg stable and at ninety degrees. After several months, and with great help, I was able to walk in the parallel bars. At first it was just a few steps. Eventually, I could walk the length of the parallel bars. My manual dexterity was improving too. I was typing with what looked like a pencil strapped to each hand. I learned to cook with adaptive devices. I scared my Occupational Therapist by typing trippy lyrics from an early Grateful Dead song.
Juan and I were progressing at about the same pace. The staff asked me to talk with Juan and hang out with him more. I guess if I set an example of good behavior, he might copy my behavior. He still had a bad temper and needed to be watched closely. I did explain to him that at RIC gangs do not count. We are all sick and we are all trying to get better. Eventually, this message may have stuck.
We had some interesting patients on our floor. There was Benny. No one knew exactly what happened to him. He fell off an elevated train station. This could have been an attempted suicide but Benny had no recollection of the accident. He could walk but he used the handles of a wheelchair for stability. He also had a head trauma look- his eyes were bug-eyed and slightly crossed and his tongue stuck out of him mouth a little. He had a full-time nurses’ aide to stay with him. Her name was Joyce. Joyce was a heavyset African American woman. She took none of Benny’s crap. Frequently, we would hear Benny say, “Joyce, I love you, baby.” This was followed with Joyce telling Benny to “be quiet!” or “hush child!” This occurred every fifteen minutes. Benny was very confused but his motor skills were good. Physically, he was one of the healthiest patients on the floor. He was just very confused.
The saddest patient was on my floor was Jerry. Jerry had serious Hoop Dreams. Unfortunately, Jerry got meningitis. To save his life, the doctors amputated one leg below the knee, one leg above the knee, one entire hand and all but1/2 of his thumb on the other hand. This did not stop Jerry from trying to charm the women. He’d lick the stump of his thumb, pretend to brush his eyebrows and then he’d sweet talk a woman. It did not matter if it was a nurse, a doctor, another patient or a visitor. Although he had poor outcomes, the woman found these attempts as charming. He was charismatic and funny. He was a good guy with very bad luck.
We had one TV set for the entire pediatrics floor. One night, Juan and Benny got into an argument over which crappy TV show all of us would watch. (Keep in mind, Juan thought the “Electric Boogaloo” was not as good as “Breakin' 2: Electric Boogaloo” That is the kind of good taste I had to deal with.) The tension between Benny and Juan escalated. Juan took the side of his wheelchair off and started swinging it at Benny. Benny just moved out of the way. Juan, dissatisfied with his violent outburst, tried to stand up! Juan was barely walking in the parallel bars with assistance. Now he planned to stand up to get into a fistfight with a confused but able-bodied person. Benny never touched Juan. Juan stood up. Juan fell down. Out of nowhere, Jerry wheeled himself over and started counting out Juan like it was a boxing match. When he got to “10, you’re out” the whole TV room went up for grabs. Jorge, the nurse straight from the Village People, came into the TV room. He shook with anger. Then he said in a loud, effeminate voice, “everybody go to your room!” After the pandemonium quieted down, the whole floor went on lockdown. We were put into our nightclothes and sent to bed early. Seeing the fight was more than enough to compensate us for going to our beds without ice cream.
One night we all danced. Someone had a boom box with some very funky music playing in the hallway. Even in our wheelchairs, we moved back-and-forth and up-and-down. Some of the patients were doing wheelies and spinning around in their wheelchairs. (The ability to do a wheelie or more precisely raises up the front wheels on a wheelchair is a necessary skill to get a wheelchair up-and-over a step such as at a crosswalk.) I was spinning around, going back-and-forth and bopping up-and-down in my electric wheelchair. Damon, one of the coolest nurses’ aides told me, “I knew you had some soul in you from your curly hair.” For once we felt like a group of normal teenagers just having fun. We were all smiling and laughing. I’m sure it was a sight to be seen.
Then there was Vince: poor Vince. He had a gunshot wound to the head. We were told that he was sleeping with a gun under his pillow and it “accidentally” went off. Right. I saw through this story. Vince tried to commit suicide and it didn’t work. Vince could talk but he was bedridden. He had bad short-term memory but he remembered the past: like the albums in his collection, where he went to school and the concerts he had seen. Frequently with head wounds, the person loses the ability to self-edit what he or she says. That means whatever he or she is thinking, he or she will just blurt it out regardless of how inappropriate it is. Vince was a horny bastard and the whole floor could hear him express his feelings. With a room full of people- doctors, nurses, nurses’ aides, visitors and HIS MOTHER- he would take out his penis and masturbate. Also, he would yell over-and-over, “I want some pussy!” One night, Vince was yelling over-and-over, “I want some pussy! Suck my dick! I want some pussy!” Outside of Vince’s room, while Vince tried to pick up women, was Robert, one of the oldest nurses’ aides. He went over to one of the youngest nurses and said, “Hey Susie, Vince wants some pussy and I can’t help him out. Will you go into Vince’s room and give him some pussy?” No lawsuits were filed. Humor kept everyone going through the day and night.
My final prank at RIC did not go as planned. It was my last night there. I decided to lie on the floor by my door, put my canes out in front of me like I fell and stuck out my tongue. I looked dead. Then I waited for hopefully for one of the younger nurses to come by and I would yell, “boo”. As it happened, one of the oldest nurses came by first. She saw me and nearly dropped dead. No more pranks!
As for me, I was progressing nicely. After five and a half months at RIC, I could walk with two canes. I still had many residual effects from the Guillain-Barre Syndrome that would take years to correct but I was walking. I needed a bunch of adaptive aids, a shower chair, ankle-foot-orthoses (I still wear them today but mostly for cosmetic reasons.) and a lot of help from my parents but I was ready to go home! I needed to come back regularly to RIC for outpatient therapy but my inpatient days were over. I had lost a year of school. I graduated in 1986 instead of 1985 but I had the easiest senior year in the history of education. I got to school at 11:00 AM and parked in the handicapped spot. I had three classes, all electives, and a lunch break and I was done by 1:30 PM. They even waived gym class. Slowly, my strength improved. I need fewer and fewer adaptive devices. I stopped walking with canes. While I still wear ankle-foot-orthoses, most people do not notice. I use a button-hooking device and I have some slight residual problems with my hands. Again, very few people notice.
There are many people that need to be thanked for sticking with me and helping me. Many of them have already been mentioned. I would especially like to send my love to my parents and sister- my mother was at the hospital everyday and everybody else visited me when they could: this was frequently. I had a funny visit with a friend of mine named Deborah Lynn. Deborah Lynn and her mother Judy visited me and they bought me the perfect gift- paint books for one year olds. All you had to do was touch an area with water and it turned the right color. I got big adaptive hand holding devices and held onto a giant paintbrush. Basically, I’d get the brush wet and I could do a whole page in two strokes. I would like to thank my Physical Therapist, Star, for all of her hard work. I may have been one of the toughest cases in her career. Also, during this whole time I was dating a girl named Lisa. We started dating two months before I got sick. She never left me. She did not go to any of the high school dances even though I told her it was OK. She did not date other people even though I said it was OK. She stuck by me the whole time. Ironically, years later she married a guy named Loren. Our parents became friend through this ordeal. I see Lisa and Loren several times a year- usually at holidays.
Like the doctor told me when I got to RIC, “If you do what I tell you to do, you will walk out of here.” I walked out of RIC!
ALL NAMES HAVE BEEN CHANGED TO PROTECT PATIENTS’ PRIVACY
So what is Guillain-Barre Syndrome According to the Mayo Clinic?
Introduction
Guillain-Barre Syndrome is an uncommon inflammatory disorder in which your body's immune system attacks your nerves, typically causing severe weakness and numbness that usually starts in your extremities and quickly worsens. Eventually your whole body can become paralyzed, even the muscles used for breathing.
The exact cause of Guillain-Barre Syndrome is unknown, but it sometimes is triggered by a respiratory infection or the stomach flu. Luckily, this potentially deadly disorder is relatively rare, occurring worldwide in only one or two people per 100,000. All age groups can be affected, but it occurs most often in young adults and the elderly.
In its most severe form, Guillain-Barre Syndrome is a medical emergency requiring hospitalization. About 30 percent of the people who have the disorder will temporarily need the help of a machine to breathe.
There is no cure for the disorder, but several treatments can ease symptoms and reduce the duration of the illness. Most people recover completely from even the most severe cases of Guillain-Barre Syndrome.
Signs and symptoms
Guillain-Barre Syndrome usually begins with weakness, tingling or loss of sensation starting in your feet and legs and spreading to your upper body and arms. In some people, these symptoms begin in the arms or even the face. As the disorder progresses, muscle weakness can evolve into paralysis. Other signs and symptoms may include:
• Difficulty with eye movement, facial movement, speaking, chewing or swallowing
• Severe pain in the lower back
• Difficulty with bladder control or intestinal functions
• Very slow heart rate or low blood pressure
• Difficulty breathing
Most people with Guillain-Barre Syndrome experience their most significant weakness within three weeks after symptoms begin. In some cases, signs and symptoms may progress very rapidly with complete paralysis of legs, arms and breathing muscles over the course of a few hours.
Treatment
There's no cure for Guillain-Barre Syndrome. But two treatments have been shown to speed the recovery from and reduce the severity of the disorder:
• Plasmapheresis. This treatment - also known as plasma exchange - is a type of
• “blood cleansing” in which damaging antibodies are removed from your blood. Plasmapheresis consists of removing the liquid portion of your blood (plasma) and separating it from the actual blood cells. The blood cells are then put back into your body, which manufactures more plasma to make up for what was removed. It's not clear why this treatment works, but scientists believe that plasmapheresis rids plasma of certain antibodies that contribute to the immune system attack on the peripheral nerves. (This was experimental when I had Guillain-Barre Syndrome and they did not do it to me. That was a huge mistake.)
• Intravenous immunoglobulin. Immunoglobulin contains healthy antibodies from blood donors. High doses of immunoglobulin can block the damaging antibodies that may contribute to Guillain-Barre Syndrome.
Each of these treatments is equally effective. Mixing the treatments or administering one after the other is no more effective than using either method alone. Treatment with plasmapheresis or intravenous immunoglobulin shortens the time period before recovery begins by as much as 50 percent.
Often before recovery begins, caregivers may need to manually move your arms and legs to help keep your muscles flexible and strong. After recovery has begun, you will likely need Physical Therapy to help regain strength and proper movement so you'll be able to function on your own. You may need training with adaptive devices, such as a wheelchair or braces, to give you mobility and self-care skills.
http://www.mayoclinic.com/print/guillain-barre-syndrome/DS00413/DSECTION=all&METHOD=print
Hello.
Is there anybody in there?
Just nod if you can hear me.
Is there anyone home?
Come on, now.
I hear you’re feeling down.
Well I can ease your pain,
Get you on your feet again.
Relax.
I need some information first.
Just the basic facts:
Can you show me where it hurts?
There is no pain, you are receding.
A distant ships smoke on the horizon.
You are only coming through in waves.
Your lips move but I can’t hear what you’re sayin.
When I was a child I had a fever.
My hands felt just like two balloons.
Now I got that feeling once again.
I can’t explain, you would not understand.
This is not how I am.
I have become comfortably numb.
Ok.
Just a little pinprick. [ping]
There’ll be no more --aaaaaahhhhh!
But you may feel a little sick.
Can you stand up?
I do believe its working. good.
That’ll keep you going for the show.
Come on its time to go.
There is no pain, you are receding.
A distant ships smoke on the horizon.
You are only coming through in waves.
Your lips move but I can’t hear what you’re sayin.
When I was a child I caught a fleeting glimpse,
Out of the corner of my eye.
I turned to look but it was gone.
I cannot put my finger on it now.
The child is grown, the dream is gone.
I have become comfortably numb.
– “Comfortably Numb” by Pink Floyd
Guillain-Barre Syndrome 1984-1985
(or “Please Straighten My Leg”)
July 14, 1984, the summer between my junior and senior years in high school, I woke up in the morning and the middle toe on my left foot was numb, like pins-and-needles. I had a deep sense of foreboding. This had never happened to me before. Throughout the course of the day, the pins-and-needles numbness spread to my hands and feet. We went to see my doctor. He had no idea what was happening to me. My parents called Children’s Memorial Hospital in Chicago, IL. My parents were told that if this became any worse, rush me to Children’s Memorial Hospital. I tried playing my drum set but I kept dropping the drum sticks. I took a nap. I woke around 3:00 PM. I was unable to walk. My right leg kept giving out under me. I tried to eat but I was unable to swallow. After I crawled to my bedroom to pick out the perfect Grateful Dead bootleg tape to listen to on the ride to the hospital, my parents helped me into the car. We made it as fast as we could, in rush hour traffic, to Children’s Memorial Hospital. Some of Children’s Memorial Hospital’s doctors and nurses were waiting for me with a wheelchair. I was rushed off. I assumed whatever I had contracted would require surgery or some strong medicine. I assumed that I would be out of the hospital and I would be enjoying the rest of my summer break from school in about a week.
As soon as the doctors got me on a gurney, a urinary catheter was inserted. The doctors did not tell me what they were going to do and I screamed in pain. I thought they had cut off my favorite part of my body (and we had just become friends). In fact, they had inserted a tube in my penis to drain my bladder. The catheter would remain inside of me for two months.
I was heavily sedated: an unpleasant feeling complete with hallucinations, paranoia and being semi-conscious but very out of touch with reality. There was no separation between dreaming and waking reality. My perceptions of the first week were very frightening and troubling. I was convinced that the doctors were trying to kill me: a fear that would linger for at least a month. They performed a spinal tap on me and stuck IV needles wherever they could find a good vein. Based on their observations and tests, I had a rare neurological disorder called, “Guillain-Barre Syndrome”. The odds of getting this syndrome are about one in fifty thousand and I had the worst case that they had ever seen at Children’s Memorial Hospital. (And I never win anything!) From the time I woke up with numbness in one toe until the time that I was completely paralyzed and on a respirator was less than 18 hours! The doctors told my parents that they should call their clergy. It appeared that I was not going to live through the night.
The first week, or what I believed to be a week, was out of a horror movie written by Hitchcock and Hitler during an all night drinking binge. I had no idea what was going on around me because I could only stare at the ceiling. In order for me to see, they had to tape open one eye. My eyelid muscles and my eye muscles were paralyzed too. If they had taped both eyes open, I would have seen double.
Everything hurt! My major joints felt like they were completely hyper-extended and my feet felt like they were being pulled barefoot over broken glass and asphalt. Occasionally, I would get strong shooting pains up-and-down my legs. Hot and cold flashes were common. I was suffering terribly with unbearable inhumane pain. The agony was like nothing I could image was even possible. I knew death was better than this. I prayed that I would die to end this nightmare. All I wanted was for the respirator to fail. I figured that my life was over and the sooner it ended the better. It was in a state of pure torture. I was told that I would get better but, at the time, I found that hard to believe.
I received relief was from shots of Demerol every six hours. At first, it worked great and I could sleep. Eventually, that effect wore off. I was awake for nearly a week- hallucinating, sleep deprived, paranoid and in constant physical and mental torment from being entirely paralyzed. The only things I could move were my eyebrows up-and-down, which meant “yes”, and my lips side-to-side, which meant “no”. I was too sick to form words with my mouth for someone to lip-read. If I wanted to say something, it had to be spelled out by the nurse: “a, b, c, d…” When the nurse got to the letter I wanted, I would lift my eyebrows. Then he or she started again, usually from the beginning of the alphabet, which I preferred. Occasionally, a nurse would say the letter I wanted. I’d lift my eyebrows. The nurse would note the letter but he or she would not start back from the beginning of the alphabet but, rather, start the alphabet, again, where he or she left off. Suppose the letter I chose was “R”- if I needed an “A” next, I’d have to wait for the nurse to go through the remainder of the alphabet to get to “A”. That seriously pissed me off but that was my only way to communicate! Communicating like this was slow, cumbersome and very ineffective. Can you imagine how long it took to spell out “scratch my nose”?
Some doctor told me that, “there was no documented pain with Guillain-Barre Syndrome therefore you might be depressed but not in pain.” Asshole! I really wanted to punch this jerk but I could only remain motionless. Today it is known that Guillain-Barre is very painful. Unfortunately, this demonstrates how little the doctors knew about Guillain-Barre Syndrome. Their knowledge has not made great leaps forward because it is such a rare syndrome. When I had it, they knew close to nothing. The doctors knew how to diagnose it but their cure was to have me lay in bed and I would slowly get better.
By the end of my first day of hospitalization, I was totally paralyzed; I had multiple I.V.’s in each arm, a urinary catheter, a respirator, a feeding tube down my nose into my stomach and a “tap” in my foot so the staff could draw blood without having to stick me with a needle. The most irksome part of it all was when the I.V. pumps’ alarms would all go off at the same time. Being helpless, these alarms were startling, very irritating and it seemed to take the nurses decades to turn off the alarms. That first week was really rough. My Neurologist and the doctor who was the Head of Intensive Care clashed constantly. There was an experimental treatment called, “Plasmapheresis”. My parents wanted me to have it, my Neurologist wanted me to have it but the Head of Intensive Care said, “No”. Today, Plasmapheresis is the standard treatment for Guillain-Barre Syndrome. If I had had it, my hospital stay would have been cut in half and my residual deficits would be less.
Very early in my hospitalization, my blood pressure shot up dangerously high. My Neurologist and the Head of Intensive Care agreed, for maybe the first and last time, that a CAT scan was in order. During the scan, I thought I was lying in a drainage ditch in a local Northbrook, IL forest preserve. I thought my arms were swinging around wildly and I had no control over them. I just kept punching the air. I could see the trees, the road and the drainage ditch and I even felt wet from the water. I thought I was waiting to be picked up by someone who would help me get away from the doctors who were trying to kill me. I was totally oblivious to the actual CAT scan and I have no recollection of it. Afterwards, I thought I had been transferred to another hospital. I had not. I was just returned to my bed in Intensive Care. In time, I became so confused that I thought that I had been in five different hospitals. It turned out that I had developed a blood clot in my lung. I was put on a blood thinner: a dangerous necessity.
At first, being paralyzed felt like my body was surrounded in a lead case and I was not strong enough to move it. Eventually, paralysis felt like my body was totally unattached from my brain and will. The torture of Guillain-Barre Syndrome is that your mind becomes fine and your body does not work. Being paralyzed is a completely disorienting state. I was lying in bed staring at what I thought was a door. But if I was lying down, why was there a door in the ceiling? I thought that if I could just make it to the door, I would be well again. I swear I saw the door open and close. Even though I was bedridden, I felt like I was standing up and leaning against a wall. This would explain the door. However, it was not a door that I was looking at but a rectangular light fixture and the track on which the privacy curtain was hung. To me, the curtain track was the outside of the door and the light was a window in the door. I never made it to the door.
Things actually got worse. I asked my nurse to see if there was something in my eye. She got a wash cloth and wiped out what was in my eye. She had a look on her face somewhere between “no way” and “holy shit”. It was turned over to the lab for a biopsy. It turned out to be fly larvae. While I was totally paralyzed, a fly had planted her eggs in my nose, mouth, ears and eyes. I was so sedated that I vaguely remembered a fly landing on my nose and there was nothing I could do about it anyway. I was the perfect place to lay eggs- warm, moist and motionless. I was rushed to the operating room to remove the parasites. My parents where “invited” to meet with the president of the hospital. Obviously what had happened to me were grounds for a lawsuit. My parents assured the president that they were not going to sue the hospital and that all they wanted was for me to get better. I guess that is easier to say when you don’t have bugs coming out of you.
At the beginning of my illness, I received many get well cards- some from people that I did not even know knew me. After a week or two, the cards became fewer and fewer. I also had visitors. The first week, no matter how hard my parents tried to prepare my visitors for what they were about to see, no one was really prepared. I had blood and cuts on my face. My hair was a mess. I smelled bad. I was attached to six machines. I had several tubes going into me. I had one eye taped open and I was totally paralyzed. I appreciated the kindness of these friends to drive from Northbrook to Chicago just to see me. However, I didn’t want to be seen in this condition and I couldn’t talk anyway. Later, I found out that many of my friends passed out in the visitor’s lounge after seeing me. (I told you that I smelled bad!) Some people never returned or they visited me once I was out of Intensive Care. My friend Mike, now a Police Officer, came to visit me frequently. He was made to handle really gross stuff. He always reassured me that I would get better and to hang on just a little longer.
My parents did not tell my sister, Jodi, what had happened to me because she was away at summer camp. However, the Northbrook/Camp Chi (Delevan, WI) gossip mill was fully operational. She found out that I was very sick. Actually, at first, she heard that I had died. In hysterics, she called my parents and they told her the truth. I’m not certain when she came home. She may have come home at the end of the camp session or she may have come home immediately. I don’t know. The first time she saw me she started to cry at my bedside. She was reassured that, in time, I would get better no matter how bad I looked. My parents did not tell any of my grandparents what had happened, either. This kind of news would easily kill octogenarians. When I had improved, my parents eventually told my grandparents about the Guillain-Barre Syndrome. Two of my grandparents lived in Florida and it was just too hard for them to fly to Chicago. My other grandmother lived in Chicago. Eventually, she would come by to visit me. She was starting to wonder why my regular phone calls to her had stopped abruptly.
Slowly, after about two weeks, I began gaining back some random muscle movements. I could open my eyes. I could form words with my mouth and some people could lip-read what I was saying- no more spelling out the alphabet. However, because I was on a respirator, I could not make any vocal sounds. My sister was great at lip-reading. I did not want her to leave my bedside because she understood what I was saying better than anyone else. I could also lift my left shoulder off the bed a little: not very handy but a sign of improvement, nonetheless.
I had Physical Therapy everyday. Basically, the Physical Therapists were concerned that my muscles would contract in the wrong positions- feet pointed straight to the ground and my arms and hands inwardly curled. They made braces to keep my muscles properly aligned. The braces for my feet were very uncomfortable and I hardly wore them. My feet and lower legs were incredibly sensitive. The breeze from someone walking past the foot of my bed caused intense pain in my feet. The only position that felt good was with my feet propped up on some pillows from the knees down. This made my neurologist nuts. Every time he saw me do this, he took the pillows away. I still don’t know why. It felt really good when someone would move my arms and legs back-and-forth. I wished that someone had invented a machine to keep me in a slow, regulated, constant movement. It felt so good to move!
Because I was still on a respirator, it was important to have daily “breathing treatments” whereby a Respiratory Therapist would pound on my chest with black rubber suction cups. I think this was to prevent pneumonia. This sounds painful. In fact, this felt great. I usually was asleep by the end of the treatment. This was one of the few things that let me sleep. Sleeping was a major issue. I would stay up for days because I was so uncomfortable. Another technique that helped ease the pain was to have someone pound or chop gently on my abdomen. I think that it aided digestion.
Four weeks into my illness, I gained slightly more and more movement. I was able to bend my left leg up towards my chest with my knee pointed to the ceiling. However, I did not have the muscle strength to put my leg back down onto the bed. A frequent request of mine was to, “please straighten my leg”. I very slowly got better and better. These were small leaps forward but every bit counted. Over the weeks, I could lift my arms off the bed a little but I had no control over my wrists and fingers and I could move one leg a little but not my feet or toes.
The doctors tried a new approach to dealing with my pain. They put me on Tegretol. It is used to treat seizures, nerve pain and bipolar disorder. I had serious nerve pain. The Tegretol worked pretty well. The shooting pains nearly stopped. While I was still in a great deal of pain, this medicine helped enough that I noticed it working.
I was still on a respirator. Getting off the respirator was a crucial landmark for me being moved to a regular hospital room. I slowly began to breathe on my own. They could tell that I was breathing because the respirator was set for 10 breaths per minute. The respirator measured every breath and it turned out that I was breathing two breaths per minute unassisted. When on a respirator, frequently, it felt like I was not getting enough air; like I was drowning and gasping for air. It was mostly psychological but the nurses would add on a breath a minute to stop the sensation of starving for air. After two weeks on a respirator, which was inserted down my throat and into my lungs, the doctors had to operate to put in a tracheostomy tube. A tracheostomy tube is a 2- to 3-inch metal or plastic tube that keeps the stoma and trachea open. A tracheostomy tube dose not let air go over the vocal cords. So I could not make a sound. Some great genius had invented a tracheostomy tube that allowed air to go over the vocal cords giving one the ability to talk. Naturally, they picked me to be a guinea pig. I guess that I was the sickest one in Intensive Care so they, logically, chose me. There were a few problems. First, the hole in the neck is called a stoma. The stoma can be different sizes depending on the age and size of the patient. The experimental tracheostomy tube was larger than my stoma. Have no fear. They took out the proper fitting tube and jammed the extra large tube right in. I heard the anatomy of my throat crack and break but they got that sucker in. We then came upon the next problem. In order for the new tracheostomy tube to work, a secondary tube had to be covered by a finger. I could only lift my arms a little bit. Covering the tube with my thumb was impossible. So someone else covered the tube. They told me to try and speak. When I did, gallons of mucus came pouring out of my mouth and nose (It sounds gross but it felt pretty good. I had not sneezed in over a month.). After all of that, the piece of shit did not work!
It took a total of 59 days until I was able to breathe unassisted. They kept me in Intensive Care for a few days longer just in case I had a relapse. I was finally ready to be moved to a regular hospital room. I was probably 85% paralyzed still but I could breathe. Also, I could eat. The entire time I was in Intensive Care, I did not eat or drink anything. I was being fed through a feeding tube. I craved an orange pop. Ironically, this is not my favorite pop but if I did not get an orange pop, a mental breakdown was surly to follow. When I was admitted to the hospital, I weighed 175 pounds. When they moved me from Intensive Care to a regular hospital room, I weighed 135 pounds. All of that weight loss was from my muscles atrophying. In total, I was in Intensive Care for two months.
Being in a regular room was a treat compared to Intensive Care. I still had daily Physical Therapy but they would take me, on a gurney that folded into a chair, to the Physical Therapy Department. I had more and more visitors because I looked more like a normal person than a sad soul who was being kept alive by machines. The pain was at a manageable level and I did not have any I.V.’s in me. My purpose in the regular room was to wait until I was strong enough to be admitted to The Rehabilitation Institute of Chicago- one of the best rehabilitation hospitals in the country. Basically, I ate, watched too much “I Love Lucy”, had Physical Therapy and got a thorough sponge bath everyday. It became pretty repetitive. Eventually, I could push myself up to a sitting position but I had no chance, then, of walking.
There was a two-year-old African American boy who was a long-term patient: his parents could not take care of him so he lived at the hospital. His name was Ronnie. They would take me down to play with him. He was adorable. He had a tracheostomy tube but he was not on a respirator and he was unable to walk or talk. He also has six finger on each hand and six toes on each foot! He had an adorable little smile when I came to visit him. We did as much playing, as our disabled states would allow. In between my visits, it was regular practice to take Ronnie outside to play on a swing set. One day, a nurse turned her back on Ronnie. Ronnie’s head fell forward and his chin covered his tracheostomy tube. He couldn’t breathe. He ended up brain dead! I went to see him after the accident and he was motionless. He was unresponsive. I could not believe what had happened. Eventually Ronnie died from this trauma. The lesson I learned was not to become too attached to other patients: many of them would die. There was a boy around my age that I would play checkers with. I was pushed to his room and there was a group of crying adults. My checkers friend had died over night. I also had a roommate who was deemed, “terminally ill” and the doctors sent him home to die. I may have been predominantly paralyzed but most people (95%) survive Guillain-Barre Syndrome. I figured that I was out of the woods. In fact, the thought never crossed my mind that I would not get better. After two month in regular care room and a grand total of four months at Children’s Memorial Hospital, I was ready to go to The Rehabilitation Institute of Chicago. I was taken to The Rehabilitation Institute of Chicago in an ambulance. Things were about to get very different for me.
The Rehabilitation Institute of Chicago
The Rehabilitation Institute of Chicago (“RIC”) was a completely different experience from that of Children’s Memorial Hospital. Every patient there was disabled but few, if any, were going to die. When I first arrived at RIC, I was put into my room which I shared with two to three other patients. I met with a rehabilitation doctor. She explained to me that when a muscle reached a certain strength, I could use it. If it was below a certain strength, I was not to use it. Using a muscle before it is strong enough can permanently damage the nerve and muscle. She said, “If you do what I tell you to do, you will walk out of here.” Ironically, this doctor was dismissed from RIC for plagiarizing on some research she claimed to have done. I quickly went under the care of a different doctor but his message was the same. Essentially, I was told not to push myself unless a Doctor, Physical Therapist or Occupational Therapist said it was all right to use a muscle or group of muscles. I had a motorized wheelchair so that I would not overuse my muscles. It went pretty fast, too.
A day at RIC was very structured. We were all woken up- too damn early- put in our wheelchairs, had our morning bathroom needs taken care of- faces washed, our teeth brushed, hair combed, and bowel and bladder care, etc. Then we were dressed. We were wheeled out to the dinning area on the floor and we were literally fed breakfast if we could not feed ourselves. Frequently, it felt like we were always rushing in the morning. Then the fun began. Everyday, I had Physical Therapy, Occupational Therapy, a little chat with the shrink and Aqua Therapy. It was exhausting. It does not sound like much but going to sleep at night was no problem. There was a pool in the building filled with really warm water. This was used to loosen very stiff muscles. I really loved Aqua Therapy. My therapist was a looker and she wore a yellow see through bathing suit- seriously! She had nothing to hide. By the end of my sessions, there were always five male staff members, just hanging around the pool- to be helpful, of course. Once I got out of the pool and lost my woody, they put me on a tilt board to put pressure on my feet so they could be stretched to a 90-degree angle. I had suffered from foot drop where my toes pointed to the ground. They had to loosen my foot and leg muscles otherwise I would not be able to walk. This routine continued day-in-and-day-out. Around noon, we were fed lunch and dinner was served around 5:00 PM. Most patients needed help eating. For that matter, most patients needed help with everything. I discovered some Soul Food that would become a family staple at Thanksgiving- Sweet Potato Pie. Ms. Johnson gave my mom her family’s recipe. At Thanksgiving we still call it “Ms. Johnson’s Sweet Potato Pie”. In the evenings, we were put on a gurney or in a shower-chair and we were given a shower usually by 23-year-old, women nurses. I did not complain because I was a dirty boy. (I still am.) We were dressed and the nights were ours. There was only one TV set on the floor. The thinking was that many of the patients would be permanently wheelchair bound. Therefore, these patients had to get used to socializing in their wheelchairs. They did not want patients to stay in their rooms cut off from other people. This is how they where going to stay and they needed to get used to it. (I was told that after about two years, patients with paralysis from spinal cord injuries get used to their conditions.) More than a few arguments broke out over what garbage we were going to watch on the TV set.
The best part about RIC was on the weekend. Because I had caretakers, I could go home on Friday nights and return on Sunday nights. I had not been home in over four months. Once I was at RIC, I went home every weekend. I had to be transferred from my electric wheelchair into the car. When I got home, I was transferred into a manual wheelchair. (The electric wheelchair weighed a ton.) I slept on the first floor couch in our living room. Many people came by to visit me while I was at home. I had just enough manual dexterity to work the remote control for the TV set. Unfortunately for my father, he was in charge of my bowl and bladder needs. I was so used to people wiping me that it did not even seem abnormal. My father, with his sense of humor, would say things like, “did you eat an orange?” All the while he did this with a look on his face like he was going to vomit. Some day I’ll probably return the favor.
During the weekdays, there was daily educational tutoring. I went to a few classes and I realized that there were 17-year-olds there that could not do long division and had great difficulty reading. This was not from their illnesses. This was from really bad educations. If I went to class, I thought it was a waste of my time and more importantly a waste the tutor’s time. I assumed that I was going to go to college in a year. I tried to make a deal with the tutor. I said, “I’m wasting your time. I’m college bound. I will come to tutoring sessions if you let me help you tutor the other patients. I’ll be your aide.” For some unknown reason, the tutor turned down my offer. (I probably came off as jerk but it was true.) I was academically ten years ahead of the other patients that were my own age. It was really pathetic. Now I know why kids get into gangs. They cannot read nor do math. They do fifth grade work- poorly- when they are 17. They have no chance of graduating from high school and the prospects for college are laughable. What else does that leave them with? They are uneducable and unemployable. I spent the rest of my days at RIC trying not to be seen by the tutor. The other patients needed her help much more than I. So I would go and hide when it was class time. Usually I’d read some porno. There was plenty of that to go around- not that I had the manual dexterity to do anything fun.
For most of my time at RIC, my roommates were Timmy and Rick. We were the same ages. Rick was a high-level quadriplegic. He dove in a river right where it said “No Diving”. (don’t ever do that) He broke his neck and could not move anything below his chest. Rick was permanently disabled. Prior to his accident, Rick was a Black Belt. Nonetheless, he was a nice guy. Timmy was, for the most part, physically fine. He could walk and he was discharged before Rick and me. He was in a car accident and he was a passenger in the back seat. In spite of everyone in the car being drunk, Timmy had the good sense to put on the lap belt while he was in the backseat. The car hit a railroad-crossing pole. The seatbelt broke Timmy’s back but did not cause any permanent spinal cord injury. He was very lucky and probably won a big lawsuit from Ford. (If he got any money, he probably shoved it up his nose.) Timmy was also maybe the least bright lightbulb in the chandelier. His speech was kind of slow and his thoughts came just as slowly. This was not from his injury but from a tiny piece of brain enigmatically stuck into his head. As we would find out, stupid people do the funniest things and we were surrounded by stupid people. Rick and I knew our stays at RIC would be hard work but very entertaining.
Rick and I were physically at about the same level- quadriplegics. The main difference is that I was going to improve and Rick was going to have to cope for the rest of his life in a wheelchair with adaptive devices. There was no hope of Rick improving much. Timmy could walk and use his legs, hands and arms. He was at RIC because his feet dragged a little which was a correctable minor problem. Rick and I were lying, mostly paralyzed, in our respective beds. Timmy was sitting on his bed drinking a quart sized Styrofoam cup of grape juice. Timmy’s mom- a former stripper turned Born Again Christian and therefore intrinsically a pain the ass- and Timmy were having an argument. Timmy said (say it slowly), “Mom, if you don’t shut the fuck up, I’m going to throw this grape juice at you!” Timmy’s mom said, “Timmy, I can always pray for your soul.” As she was getting down on her knees to pray, Timmy threw his massive cup of grape juice at his mom. BAM! Dead ringer… right in the head… Grape juice went everywhere: all over Timmy’s mom, all over Timmy, all over Timmy’s bed and all over the window. She ran out of the room crying and screaming something about Jesus and The Day of Judgment. We all got hysterical. After a short period, it was time for the investigation to begin. Rick and I were incapable of throwing a drink. Several nurses’ aides came into our room. The three of us were still giggling. One of the least bright nurses’ aide said, “Who threw the drink?” Hmm, this is a toughie. Was it quadriplegic 1 (Rick) or quadriplegic 2 (me) or was it Timmy- the only person in the room who could have possibly had the physical strength to throw a large cup of grape juice? The nurses’ aide said, “Well, if you’re not going to tell me…you’ll all have to clean it up!” Rick and I looked at each other with the same look: “Is this woman retarded?” We were all quiet. No one was going to tell on Timmy regardless of how self-evident it was that he threw the grape juice. More nurses’ aides came into the room. If Rick and I were going to “help” Timmy clean up the grape juice, Rick and I had to be put into our wheelchairs. This took more nurses’ aides than was in the original investigation party. So we went from two nurses’ aides to needing four nurses’ aides. They wheeled Rick and me over to the window. On Rick’s lap they placed paper towels. On my lap they placed a bucket of soapy water. I put my arms around the bucket the best that I could. Then Timmy took a towel from Rick’s lap, dipped it into the bucket on my lap and started cleaning the window. The nurses’ aides, realizing we were on task, left us alone to clean up Timmy’s mess. We couldn’t believe this non-sense. Rick and I added no value to the clean-up process and this was hardly punishment. We were tables! We just had to sit there and watch Timmy work. The more Timmy cleaned, the quicker we escalated from giggling into outright laughter at the blatant stupidity of the event.
Disability knows no race, gender or socio-economic class. On our floor, which was for pediatrics (infants to age 18), there were patients from all walks of life. It did not matter the differences between the patients. We were all disabled which was an overarching similarity. The other major difference was how people became disabled: there were rare disease like I had, failed attempted suicides, head traumas, car accidents, scuba-diving accidents, falls, motorcycle accidents, broken necks from diving where it said, “No Diving”, swimming accidents, children who ate their parents’ stash of drugs and had brain damage, and general stupidity, etc. We all had to get along because we were all in the same predicament- disabled. This commonality negated our differences. Everybody comingled without regard to gender, race or disability. The only factor that divided us was age.
The only other person on my floor with Guillain-Barre Syndrome was a Hispanic guy my age named Juan. I was excited to meet him. We were about equally disabled. He was supposedly a gangbanger from Aurora. None of his gang buddies ever came to visit him. His mother only came to visit him once a month. He never talked about his father. I felt bad for him but Juan found many ways to vent his anger from his gang members and family alimentation. Juan was a nightmare. He never let go of the gangbanger mentality and he wanted to show everyone how tough he was- Guillain-Barre Syndrome or not. He never became aware that at RIC, you leave the gang non-sense at the door. When I first met Juan, he was in a single room which was very unusual, lying on a mattress on the floor which was also very unusual. He had no bed. He was also secured firmly to his mattress because he kept trying to jump out from the mattress in order to start fights to prove how tough he was. He would literally crawl on the ground to get to the person who angered him, which was pretty much everyone but me. Finally, he had full-time nurses’ aides in his room watching him to make sure that he did not misbehave. Juan’s behavior was counter-productive to him getting better. In order to recover from Guillain-Barre Syndrome, one had to take it easy. He was far too active and violent to make a smooth recovery. Needless to say, he was not liked by the staff, which was a big disadvantage because he counted on these people to help him with everything. Also, the other patients kept away from him. He reminded everybody that, “he was in gang in Aurora”. No one cared about this except Juan. In tutoring class, I found out that he could not read nor could he do math. He was prone to violence: the perfect low-level gang member. I’m not even sure that it was true that he was in a gang because he had no gang tattoos and no one from his sacred gang ever came to visit him. What a nice bunch of friends.
I progressed slowly. My feet were finally at ninety degrees so I could be fitted with ankle-foot-orthoses: basically a plastic leg brace that supported the foot from underneath and stopped below the knee. These were needed because I had foot drop. I actually couldn’t move my foot in any direction, so the ankle-foot-orthoses kept my foot and lower leg stable and at ninety degrees. After several months, and with great help, I was able to walk in the parallel bars. At first it was just a few steps. Eventually, I could walk the length of the parallel bars. My manual dexterity was improving too. I was typing with what looked like a pencil strapped to each hand. I learned to cook with adaptive devices. I scared my Occupational Therapist by typing trippy lyrics from an early Grateful Dead song.
Juan and I were progressing at about the same pace. The staff asked me to talk with Juan and hang out with him more. I guess if I set an example of good behavior, he might copy my behavior. He still had a bad temper and needed to be watched closely. I did explain to him that at RIC gangs do not count. We are all sick and we are all trying to get better. Eventually, this message may have stuck.
We had some interesting patients on our floor. There was Benny. No one knew exactly what happened to him. He fell off an elevated train station. This could have been an attempted suicide but Benny had no recollection of the accident. He could walk but he used the handles of a wheelchair for stability. He also had a head trauma look- his eyes were bug-eyed and slightly crossed and his tongue stuck out of him mouth a little. He had a full-time nurses’ aide to stay with him. Her name was Joyce. Joyce was a heavyset African American woman. She took none of Benny’s crap. Frequently, we would hear Benny say, “Joyce, I love you, baby.” This was followed with Joyce telling Benny to “be quiet!” or “hush child!” This occurred every fifteen minutes. Benny was very confused but his motor skills were good. Physically, he was one of the healthiest patients on the floor. He was just very confused.
The saddest patient was on my floor was Jerry. Jerry had serious Hoop Dreams. Unfortunately, Jerry got meningitis. To save his life, the doctors amputated one leg below the knee, one leg above the knee, one entire hand and all but1/2 of his thumb on the other hand. This did not stop Jerry from trying to charm the women. He’d lick the stump of his thumb, pretend to brush his eyebrows and then he’d sweet talk a woman. It did not matter if it was a nurse, a doctor, another patient or a visitor. Although he had poor outcomes, the woman found these attempts as charming. He was charismatic and funny. He was a good guy with very bad luck.
We had one TV set for the entire pediatrics floor. One night, Juan and Benny got into an argument over which crappy TV show all of us would watch. (Keep in mind, Juan thought the “Electric Boogaloo” was not as good as “Breakin' 2: Electric Boogaloo” That is the kind of good taste I had to deal with.) The tension between Benny and Juan escalated. Juan took the side of his wheelchair off and started swinging it at Benny. Benny just moved out of the way. Juan, dissatisfied with his violent outburst, tried to stand up! Juan was barely walking in the parallel bars with assistance. Now he planned to stand up to get into a fistfight with a confused but able-bodied person. Benny never touched Juan. Juan stood up. Juan fell down. Out of nowhere, Jerry wheeled himself over and started counting out Juan like it was a boxing match. When he got to “10, you’re out” the whole TV room went up for grabs. Jorge, the nurse straight from the Village People, came into the TV room. He shook with anger. Then he said in a loud, effeminate voice, “everybody go to your room!” After the pandemonium quieted down, the whole floor went on lockdown. We were put into our nightclothes and sent to bed early. Seeing the fight was more than enough to compensate us for going to our beds without ice cream.
One night we all danced. Someone had a boom box with some very funky music playing in the hallway. Even in our wheelchairs, we moved back-and-forth and up-and-down. Some of the patients were doing wheelies and spinning around in their wheelchairs. (The ability to do a wheelie or more precisely raises up the front wheels on a wheelchair is a necessary skill to get a wheelchair up-and-over a step such as at a crosswalk.) I was spinning around, going back-and-forth and bopping up-and-down in my electric wheelchair. Damon, one of the coolest nurses’ aides told me, “I knew you had some soul in you from your curly hair.” For once we felt like a group of normal teenagers just having fun. We were all smiling and laughing. I’m sure it was a sight to be seen.
Then there was Vince: poor Vince. He had a gunshot wound to the head. We were told that he was sleeping with a gun under his pillow and it “accidentally” went off. Right. I saw through this story. Vince tried to commit suicide and it didn’t work. Vince could talk but he was bedridden. He had bad short-term memory but he remembered the past: like the albums in his collection, where he went to school and the concerts he had seen. Frequently with head wounds, the person loses the ability to self-edit what he or she says. That means whatever he or she is thinking, he or she will just blurt it out regardless of how inappropriate it is. Vince was a horny bastard and the whole floor could hear him express his feelings. With a room full of people- doctors, nurses, nurses’ aides, visitors and HIS MOTHER- he would take out his penis and masturbate. Also, he would yell over-and-over, “I want some pussy!” One night, Vince was yelling over-and-over, “I want some pussy! Suck my dick! I want some pussy!” Outside of Vince’s room, while Vince tried to pick up women, was Robert, one of the oldest nurses’ aides. He went over to one of the youngest nurses and said, “Hey Susie, Vince wants some pussy and I can’t help him out. Will you go into Vince’s room and give him some pussy?” No lawsuits were filed. Humor kept everyone going through the day and night.
My final prank at RIC did not go as planned. It was my last night there. I decided to lie on the floor by my door, put my canes out in front of me like I fell and stuck out my tongue. I looked dead. Then I waited for hopefully for one of the younger nurses to come by and I would yell, “boo”. As it happened, one of the oldest nurses came by first. She saw me and nearly dropped dead. No more pranks!
As for me, I was progressing nicely. After five and a half months at RIC, I could walk with two canes. I still had many residual effects from the Guillain-Barre Syndrome that would take years to correct but I was walking. I needed a bunch of adaptive aids, a shower chair, ankle-foot-orthoses (I still wear them today but mostly for cosmetic reasons.) and a lot of help from my parents but I was ready to go home! I needed to come back regularly to RIC for outpatient therapy but my inpatient days were over. I had lost a year of school. I graduated in 1986 instead of 1985 but I had the easiest senior year in the history of education. I got to school at 11:00 AM and parked in the handicapped spot. I had three classes, all electives, and a lunch break and I was done by 1:30 PM. They even waived gym class. Slowly, my strength improved. I need fewer and fewer adaptive devices. I stopped walking with canes. While I still wear ankle-foot-orthoses, most people do not notice. I use a button-hooking device and I have some slight residual problems with my hands. Again, very few people notice.
There are many people that need to be thanked for sticking with me and helping me. Many of them have already been mentioned. I would especially like to send my love to my parents and sister- my mother was at the hospital everyday and everybody else visited me when they could: this was frequently. I had a funny visit with a friend of mine named Deborah Lynn. Deborah Lynn and her mother Judy visited me and they bought me the perfect gift- paint books for one year olds. All you had to do was touch an area with water and it turned the right color. I got big adaptive hand holding devices and held onto a giant paintbrush. Basically, I’d get the brush wet and I could do a whole page in two strokes. I would like to thank my Physical Therapist, Star, for all of her hard work. I may have been one of the toughest cases in her career. Also, during this whole time I was dating a girl named Lisa. We started dating two months before I got sick. She never left me. She did not go to any of the high school dances even though I told her it was OK. She did not date other people even though I said it was OK. She stuck by me the whole time. Ironically, years later she married a guy named Loren. Our parents became friend through this ordeal. I see Lisa and Loren several times a year- usually at holidays.
Like the doctor told me when I got to RIC, “If you do what I tell you to do, you will walk out of here.” I walked out of RIC!
ALL NAMES HAVE BEEN CHANGED TO PROTECT PATIENTS’ PRIVACY
So what is Guillain-Barre Syndrome According to the Mayo Clinic?
Introduction
Guillain-Barre Syndrome is an uncommon inflammatory disorder in which your body's immune system attacks your nerves, typically causing severe weakness and numbness that usually starts in your extremities and quickly worsens. Eventually your whole body can become paralyzed, even the muscles used for breathing.
The exact cause of Guillain-Barre Syndrome is unknown, but it sometimes is triggered by a respiratory infection or the stomach flu. Luckily, this potentially deadly disorder is relatively rare, occurring worldwide in only one or two people per 100,000. All age groups can be affected, but it occurs most often in young adults and the elderly.
In its most severe form, Guillain-Barre Syndrome is a medical emergency requiring hospitalization. About 30 percent of the people who have the disorder will temporarily need the help of a machine to breathe.
There is no cure for the disorder, but several treatments can ease symptoms and reduce the duration of the illness. Most people recover completely from even the most severe cases of Guillain-Barre Syndrome.
Signs and symptoms
Guillain-Barre Syndrome usually begins with weakness, tingling or loss of sensation starting in your feet and legs and spreading to your upper body and arms. In some people, these symptoms begin in the arms or even the face. As the disorder progresses, muscle weakness can evolve into paralysis. Other signs and symptoms may include:
• Difficulty with eye movement, facial movement, speaking, chewing or swallowing
• Severe pain in the lower back
• Difficulty with bladder control or intestinal functions
• Very slow heart rate or low blood pressure
• Difficulty breathing
Most people with Guillain-Barre Syndrome experience their most significant weakness within three weeks after symptoms begin. In some cases, signs and symptoms may progress very rapidly with complete paralysis of legs, arms and breathing muscles over the course of a few hours.
Treatment
There's no cure for Guillain-Barre Syndrome. But two treatments have been shown to speed the recovery from and reduce the severity of the disorder:
• Plasmapheresis. This treatment - also known as plasma exchange - is a type of
• “blood cleansing” in which damaging antibodies are removed from your blood. Plasmapheresis consists of removing the liquid portion of your blood (plasma) and separating it from the actual blood cells. The blood cells are then put back into your body, which manufactures more plasma to make up for what was removed. It's not clear why this treatment works, but scientists believe that plasmapheresis rids plasma of certain antibodies that contribute to the immune system attack on the peripheral nerves. (This was experimental when I had Guillain-Barre Syndrome and they did not do it to me. That was a huge mistake.)
• Intravenous immunoglobulin. Immunoglobulin contains healthy antibodies from blood donors. High doses of immunoglobulin can block the damaging antibodies that may contribute to Guillain-Barre Syndrome.
Each of these treatments is equally effective. Mixing the treatments or administering one after the other is no more effective than using either method alone. Treatment with plasmapheresis or intravenous immunoglobulin shortens the time period before recovery begins by as much as 50 percent.
Often before recovery begins, caregivers may need to manually move your arms and legs to help keep your muscles flexible and strong. After recovery has begun, you will likely need Physical Therapy to help regain strength and proper movement so you'll be able to function on your own. You may need training with adaptive devices, such as a wheelchair or braces, to give you mobility and self-care skills.
http://www.mayoclinic.com/print/guillain-barre-syndrome/DS00413/DSECTION=all&METHOD=print
Wednesday, April 30, 2008
Chapter 5: Kevin 1967-1983
The Long and Winding Road
The long and winding road
That leads to your door
Will never disappear
I’ve seen that road before
It always leads me here
Lead me to you door
The wild and windy night
That the rain washed away
Has left a pool of tears
Crying for the day
Why leave me standing here
Let me know the way
Many times I’ve been alone
And many times I’ve cried
Any way you’ll never know
The many ways I’ve tried
But still they lead me back
To the long winding road
You left me standing here
A long long time ago
Don’t leave me waiting here
Lead me to your door
But still they lead me back
To the long winding road
You left me standing here
A long long time ago
Don’t leave me waiting here
Lead me to your door
Yeah, yeah, yeah, yeah
- “The Long and Winding Road” by The Beatles
Kevin 1967-1983
I met Kevin in jr. high school. We weren’t that close but he did go to my Bar Mitzvah. I know this from pictures that we have of him from the blessed and awkward event. Early in our freshman year, we met up at a Rolling Stones concert- my first rock concert. We smoked a couple of bowls together. Neither of us knew that the other one was a partier. Knowing this, we started to hang out more and more. It wasn’t only the weed that made up our friendship, but it felt like we were brothers. We both had sisters in real life and no brothers. So, we filled a missing psychological gap for each other; we were the brothers that the other one didn’t have. During freshman and sophomore years we were inseparable. We both discover the Grateful Dead at more-or-less the same time. We both collected Grateful Dead bootleg concert tapes and albums. We obsessed about this band. I, personally, had a Grateful Dead shirt for every day of the month. I saw my first Grateful Dead concert in the summer of 1982 at Alpine Valley Music Theater, East Troy, WI. with my friend Jim. (Jim is now a Principal Timpanist for an international symphony.) Kevin and I went to what would be my second and his first Grateful Dead concert in the summer of 1983 at The Poplar Creek Music Theater, Hoffman Estates, IL. (Sears bought this land and demolished the open-air music theater. No one knows why. I can only assume that it was hemorrhaging money.) Kevin’s parents would not let him go to both concerts- a Grateful Dead tradition. If they are in town for two nights, you go to both concerts because they are going to be two totally different concerts. Kevin drove a bunch of friends from Northbrook, IL back home after his first Grateful Dead concert. We were in his brown Country Squire station wagon with fake wood paneling. All ten people in the car were on acid. (This is every parent’s dream- a carload of teenagers, taking LSD and driving.) Getting home necessitated driving on the tollway. This isn’t the greatest situation when you are seeing ping-pong balls hitting the car’s hood and laser beams whirling everywhere. We were about to enter the tollway when we saw a huge truck barreling down the road quickly- or so we thought. We had a choice of whether to out race this truck or stay put. This is a big decision when you’re tripping and you have tripping cheerleading squads behind you, half yelling, “go for it” and half yelling, “Stop”. (Our friend Ben was in the back seat pounding his fists on the front seat yelling, “truck, truck, truck!” We may never let him live that down.) In the car was a psychedelic chorus of insane life-or-death confusion. What to do? Kevin was totally cool about the situation; he turned around and yelled to everyone to “shut the fuck up!”- And the car did not move. The truck passed us. It had to be going 90 M.P.H. If Kevin had gone forward ten feet further we would have made the news the next day: “and the decease teenagers are…” Kevin had good street smarts and survival skills. We all got home safely but I am sure that no one got any sleep because of the eyelid movies from the acid. It was risky behavior but we did not realize it at the time and we were no worse for wear-and-tear. So, I had, by the end of he summer of 1983 seen, the Grateful Dead three times and Kevin had seen them once. We were crazy about this band and the uniquely American sub-culture that meant being a Deadhead. Kevin and I were Deadheads in our minds but older, more hardcore Deadheads who saw at least 100 Grateful Dead concerts since 1972 didn’t consider us Deadheads: but we were young. Being a Deadhead was our social identity in and out of the school and we sought out others like us from around the North Shore of Chicago. Deadheads were usually easy to spot- long hair, tie-dyed shirts and/or pants or Jerry Garcia or Grateful Dead clothing, patches and buttons. Eventually, there were a bunch of us hanging out, forming bands, trading bootleg tapes and going to concerts.
Yes, Kevin and I got into drugs far too early in our lives. We weren’t serious juvenile delinquents- no problems with the police- but we were surely slackers. Schoolwork seemed to be a waste of time and it was filled with useless and pointless knowledge. We scoffed at authority and we hated high school. For me, it just didn’t fit my learning style and it felt like a prison. We didn’t take advantage of any of the benefits of going to a top-notch high school. We were too busy wasting time (smoking weed and drinking beer) and we accepted that a “B-” was a good grade. Besides we were having fun. We couldn’t believe that there were actually students in our high school that studied five hours a night. Dorks! And they became doctors or now rule corporate America with their high paying, high power jobs. Who’s the dork now? College felt like light years away but my attendance to a college was a given. Glenbrook North High School, Northbrook, IL had a student body that was split between the “sportos” and the “freaks”. (This division appears in most of John Hughes’ movies: the high school’s most famous alumnus.) Kevin and I were proud to be freaks. We wore “grunge style” clothing back when it was just called “sloppy”. Half of the freaks were into heavy metal and the rest of us, more-or-less, were into The Grateful Dead. What Kevin and I didn’t know is that half of the people in our crowd would grow up to be mature adults with normal lives and the other half would grow up to have serious problems: prison, hard drugs, mental illness, etc. What I realize now about the freaks is that many of them were Special Education students. We hung out with these people in “freak hall” and at parties and concerts but we did not take classes with most of them. We were in regular classes instead of Advanced Placement classes that we should have been in if we had put effort into school. I did participate, briefly, in the Science Club and I was in Marching Band for a semester. At Glenbrook North, the Marching Band competed nationally. They took this shit very seriously. I, on the other hand, did not. There was no room for improvisation and worst of all is that they made me play the cymbals. Four years of drumming and I played the cymbals with bass clarinet players who couldn’t march with their instruments. It was humiliating. Also, we only knew five songs. So every week, we played the same five songs at the football game and no one in the audience even watched us. It sucked. There was a third group of students at Glenbrook North. Those that were neither “freaks” nor “sportos” were “bandies”. Bandies were a scary, brainwashed, cultist group of musicians that I clearly did not fit in with. (A few of the band members were fantastic musicians and some did go on to have professional music careers.) At the time, I hated it. I was listening to improvisational music and the Marching Band played rigidly timed and scored music with me asleep at the cymbals. I just wasn’t the kind of music I wanted to be involved with and their seriousness about the band took all of the fun out of it. That semester, freshman year, I did get my first hickey on a band trip to Tennessee- from a senior no less. (Hi Donna, if you’re reading this, I’ve gotten my braces off!)
Kevin and I hung out after school almost every day. We listened to the Grateful Dead, talked about girls and smoked weed. Kevin had better luck with the ladies than I did. He was a few girlfriends ahead of me. He played guitar and bass. I played the drums (and cymbals). We jammed often. We beat the hell out of Grateful Dead tunes and did some crappy jams. To us it sounded like a symphony- the only symphony in the world with only a bass player a drummer. Once Kevin tried to sing “Sugaree” by the Grateful Dead and my mom came rushing down the stairs into the basement where we were playing. My mom said, “Kevin, you can’t sing”. He never tried that again. His singing was awful. It was so bad that the two of us laughed our way through the song. I don’t know why, but Kevin and I were always in different bands throughout high school. We would go and see each other’s bands play but we never played in front of an audience together. Maybe this was for the best even through I was a seasoned cymbal player.
Kevin had a wild streak that I did not have. He lived about three blocks from the high school. Whenever there was an all school assembly, which we had no intension of going to, Kevin would throw huge parties after his parents went to work. About fifty to seventy five freaks would cram into Kevin’s apartment. These parties were insane: drinking, smoking, getting stoned and getting laid at 8:00 AM. Kevin always wore a pink Polo shirt whenever he hosted one of these early morning bashes. He was also known for wearing pink Polo shirts on Wednesdays. It was just one of his quirks. In the back of my mind, I worried that one or both of his parents would come back home? How would Kevin explain an apartment packed full of drunk, stoned and naked teenagers to his parents? More to the point how would Kevin like military school? Luckily for Kevin, it never happened. There was no parental interference, whatsoever. He seemed to have good Karma in that respect. So around the time when the assembly was coming to an end, we stumbled back to school. Most of the party’s attendees were inebriated all day. We winked at each other in the hallways during passing periods because we all knew how we spent the morning. Truth be known, I never did like being stoned or drunk at school. So I took it pretty easy at these parties. When we went back to school, Kevin stayed back and tidied up his apartment. Nothing was ever broken or stolen. His parents never found out about the early morning parties Kevin hosted. These parties were legendary.
I know I have painted a pretty ugly picture of Kevin. He had his faults, as did I. However, he was a ton of fun and he didn’t have a bad bone in his body. He didn’t lie or steal or get into fights, as far as I know. He had a great sense of humor which manifested itself in a heavy nasal laugh. He was a friend to many and as we came to learn many loved him. He was hard to dislike. He had a smile that the girls would melt from. The guys thought he was cool too. I cannot emphasize what a great character he had. He was smart and mature for his age. Yes, we did drugs, which wasn’t the smartest way to spend high school. It was not a particularly smart way to drive a car either but we did that too. He made my freshman and sophomore years in high school really enjoyable. Kevin and I always found something to do. He was someone I could always count on and turn to in bad situations. Even though we were doing drugs, we did not do hard drugs- cocaine, heroin, etc. - just marijuana, very occasionally LSD and cheap malt liquor-Old English 800 was our brand. One 40-ounce bottle, which cost $0.99, got one really drunk. Our behavior was obviously not good to even the most casual observer. Looking back, I am not thrilled by my adolescent behavior but we were not alone in developing these bad and risky habits in high school- it is all too common. We may have been naïve risk-takers but we were not bad kids. We were sloppily dressed, slacker, Deadheads who didn’t understand the importance of high school.
One of the funniest things that ever happened involved a bunch of doses of LSD. We had scored a bunch of hits of really good acid on a Thursday. Kevin had never tripped before so he really didn’t know what he was in for. We swore to each other that we would wait until Friday night to take the acid together. Thursday night, at around 7:00 PM, I got a call from Kevin. He said in a whisper, “Man, I am trippin’ so hard!” I said, “Dude, we were going to wait until tomorrow!” Kevin said, “Man, I couldn’t wait. How long does this shit last for?” I replied, “Eighteen hours. You are going to have a fun night. Put a Grateful Dead bootleg in your Walkman, turn off the lights and enjoy the show. See you tomorrow and we’re still on for tomorrow night.”
There is a rumor, a “rule” if you will, that if you take acid one day, if you want to do it again the next day, you had to take triple the amount from the first day. It is probably not true but we thought it was the truth. So we went down to my parents’ basement. A mutual friend of ours, Mike (he’s now a Police Officer.), joined us to be our totally sober leader and trip-master. He was there to make sure Trippy and Dippy did not get killed. I took one hit of acid and following the “rule”, Kevin took three hits of acid. About thirty minutes later, the psychedelics start kicking in- metallic taste in my mouth, two-dimensional objects appeared to be three-dimensional, voices echoed, etc. My goal was to get the hell out of my parents’ house quickly. For some reason, Kevin felt most comfortable in the kitchen talking with my parents!!! Mike, sensing that this could only lead to bad things happening to us, said something to my parents and we were out of the house. We didn’t have our Driver’s Licenses (did I mention we were kind of young?) and therefore we had no cars. Mike had his own bicycle. Kevin and I rode my parents’ beat up, brown, single speed, tandem bicycle. So there were Kevin and I tripping our brains out on a bicycle built for two riding around the psychedelic streets of Northbrook. Laser beams, melting trees and a road that was breathing was my reality. Everything that was illuminated left long extended light beams or “tracers”. I was hallucination very heavily (Did you figure that out yourself, Einstein?). And I can only imagine what was happening in Kevin’s mind. We were having a blast. After a while, the three of us had the great idea to go play in a cemetery. We wanted to go to the oldest cemetery in town. There was a cemetery in Northbrook where the names on the headstones were also major streets in Northbrook: Northbrook’s founding fathers. In order to get there, we had to cross the intersection of Willow Rd. and Shermer Ave. - something we had done 100 times. This was a pretty busy intersection during rush hour and it was dark out. Kevin and I had no way of getting across the street. It was hopeless. There were too many lights and supernatural sounds- and the sea of lights that could mean anything. We were seriously unable to comprehend a green light and a walk sign from a red light and a do not walk sign. There were too many lights, all with tracers, coming from every direction- headlights, stop-and-go lights and hallucinated lights. Kevin and I just looked at each other, smiled, and proceeded to walk into the street. A hand grabbed me from behind and pulled me back. It was Mike. He said,” You idiots, the light’s red.” Kevin and I said together, “Which lights?” We made it to the cemetery. Mike immediately took off running leaving Kevin and me alone. It was time to go exploring. Mike’s plan was to jump out from behind a headstone and freak us out. We were on to him. Even when tripping, when we got near a headstone and we heard Mike giggling, we knew he was going to jump out. Usually we beat him to it- a sort of psychedelic precognition. I have no idea how long we were in the cemetery for. We ended up back at my parents’ house. When we arrived, my parents thankfully went to bed because they thought we were having a sleepover party. That was everybody’s’ excuse to his parents for being gone all night. The three of us stayed up all night, played pinball and quietly listened to music. I wonder if my parents noticed that Kevin and I did not sleep that night. (Not together you sick-o!) Eventually Mike went to sleep- he was sober. Kevin and I had a long way to go before we “touched down”. That’s the one thing about acid is that it lasts too long. After ten hours, enough is enough but it usually lasts eighteen to twenty four hours. Not too bad for a $3 a hit drug- a day and night of insight, fun, laughter, hallucinations and free access to the unused portions of one’s brain.
Freshman and sophomore years went fine, except for our grades which only twits cared about. When junior year came around, Kevin and I saw less and less of each other. I did not, at the time, understand this. We still hung out but it went from everyday to once a week. We did not have girlfriends but Kevin and I drifted apart. On a sunny Friday morning, he picked me up from my house to go to school. He and I chatted with my parents. (Kevin may have snuck a handful of croutons in him mouth- his favorite munchies.) He and I left and smoked a joint on the way to school. One of the few times I was high in high school.
The next day, Saturday, October 22, 1983, my parents came to my place of work- The Northbrook Gun Club, trap and skeet shooting. My mother was crying. I thought that one of my grandparents had died. My mother said to me the last thing I ever expected to hear, “Kevin died early this morning. He was hit by a car while he was changing a flat tire.” I freaked out. I ran around the gun club crying and screaming. I cried for days. Many of our mutual friends came over to my parents’ house to console each other. Someone had some hash and we smoked it right in my parents’ living room with my parents at home. Fuck it! Who cares? It couldn’t get any worse. Everybody knew Kevin and I were like brothers and that I was going to take this very poorly. I was in denial, confused, angry and I had a lot of questions. We went to Kevin’s parents’ apartment. There were adults there, friends and relatives, crammed into their apartment- just like one of Kevin’s early morning parties. No one seemed that upset. I was a wreck and I could not believe how calmly these people were taking such tragic news. At the urging of a friend who was there, we poured ourselves some strong drinks while no one was looking. We went into Kevin’s bedroom. I spotted his only Grateful Dead ticket that he had proudly displayed in a plastic case. I grabbed it and shoved it in my pocket. I still have it today. We went to talk to Kevin’s mother to find out what had happened. She gave us what became the “standard party line”. “He came home at 11:00 PM and we all went to bed. Kevin snuck out of the house around midnight and was driving to Aurora , IL (48 miles southwest of Northbrook!) on a rainy Saturday morning. He lost control of he car. He was trying to change a flat tire and he was hit by a car”. But what the hell was he doing going to Aurora in the early hours of the morning? He had never mentioned Aurora or anyone from Aurora before to me. Then we asked his mother if he was drunk. His mother said that, “the police said that there were no drugs or alcohol in Kevin’ system”. That explanation was laughable. Clearly it was untrue because I smoked pot with Kevin 18 hours before he died. Others had partied with Kevin later that day. There is even a rumor that he had psychedelic mushrooms, too. I pondered the standard party line for years. If I wanted the truth, I was going to have to enquire extensively about what Kevin was really up to. It took years and the circumstances are still not perfectly clear.
When my family and I arrived at the funeral home, Kevin’s car was parked outside. I noticed that he did not have one flat tire. Rather, he had two flat tires and the driver’ side of the car was smashed in. He did not have a flat tire. He had a major accident. This was another clue that the standard party line was false. The funeral home was filled to capacity- freaks, sportos, bandies, parents, family friends and relatives. The tears were flowing and loud sobs were audible. There is nothing more devastating than the loss of child or adolescent. I was a pallbearer. Kevin’s family viewed his body behind a curtain before the coffin was shut and the service began. I regret, to this day, that I did not go behind the curtain to see Kevin for the last time. After the service, I went behind the funeral home and cried uncontrollably. I was inconsolable. Almost everybody at the service went to the cemetery. The funeral procession was nearly two miles long. This was going to be particularly hard for our friend D.J. His father had died when D.J. was in 8th grade. His father was buried at the same cemetery in which Kevin was to be buried. We buried my best friend. In the Jewish tradition, we all shoveled three shovelfuls of dirt into the grave. No one left until the grave was totally filled. For many of us, this was our first experience with death. As teenagers, most of us didn’t have the psychological maturity to cope with this. I didn’t. Senior year, I read Elisabeth Kübler-Ross, M.D’s. book On Death and Dying.
Years went by and I could not reconcile the standard party line with what I thought was the truth. For years I had asked people who knew Kevin what they really knew about Kevin’s behavior when I was not around. It turns out that he was doing cocaine: a drug that quickly gets its claws into a user, makes one a different person in all of the wrong ways and ruins one’s life. One does cocaine until he or she is broke, totally out of cocaine or dead. This explained quite a bit. I had not done cocaine. People that do cocaine hang out with other people who do cocaine because someone probably knows where to get more cocaine- a vicious circle of fake friends united by cocaine. Since I did not fit the bill, Kevin and I saw less and less of each other. He showed me some cocaine once. I could not believe that a tiny bit of powder that got one high for 30 minutes was $25. I took a pass. Several people said that they saw Kevin at cocaine parties where all of the attendees powdered their noses around mirrors and glass tables. As for the stranger in Aurora, I suspect that he was Kevin’s dealer. No one sneaks out of their house to drive a 100 mile round-trip on a raining Saturday morning except to get hard drugs. The night before Kevin died, a bunch of our mutual friends were hanging out in front of the liquor store trying to get some beer. Several people told me that that night KEVIN HAD A GUN. Most likely this was obtained from the stranger in Aurora. Had he become grossly paranoid from cocaine use? Kevin needed a gun as much as he needed a Lear Jet to get to school. It was pointless, dangerous and very disturbing to those around him. No one we knew, with the exception of Army brats, has a gun. No one in high school needs a gun in Northbrook, IL, an upper-middle class community. Had Kevin lost his mind? He died less than three hours after brandishing this gun. He was probably making a cocaine run. I knew that the accident he had was more severe than a flat tire. I saw the car at the funeral home and it was a mess. Kevin probably realized that he was in very deep shit. He was probably craving cocaine, he had a gun, probably drugs or drug paraphernalia with him and he was in a major accident. He probably figured that he was going to jail or his parents were going to ground him until he ready to go to military school. What plagues me is the question: “Did Kevin commit suicide?” Did he deliberately jump in front of a car going at highway speeds to end his self-made problems and the agony of cocaine withdrawal? Had he gone that far downhill from cocaine in the course of six months that suicide seemed to be a viable option? Only Kevin knows which probably means that we will never know. Kevin has left me with a hole right through the center of me. This hole is still healing today. This event made Mike, the future Police Officer, and I closer friends. In fact, Mike is my best friend today and has been for many years. We always get a good chuckle about that night with Kevin and us in the cemetery. Now Kevin is in a cemetery forever and I still miss him. Occasionally, I will visit him. His father died of a stroke years later so he and Kevin are buried next to each other. I always put a rock (a Jewish tradition), roses and a Grateful Dead sticker on Kevin’s headstone. He would have wanted it that way.
The long and winding road
That leads to your door
Will never disappear
I’ve seen that road before
It always leads me here
Lead me to you door
The wild and windy night
That the rain washed away
Has left a pool of tears
Crying for the day
Why leave me standing here
Let me know the way
Many times I’ve been alone
And many times I’ve cried
Any way you’ll never know
The many ways I’ve tried
But still they lead me back
To the long winding road
You left me standing here
A long long time ago
Don’t leave me waiting here
Lead me to your door
But still they lead me back
To the long winding road
You left me standing here
A long long time ago
Don’t leave me waiting here
Lead me to your door
Yeah, yeah, yeah, yeah
- “The Long and Winding Road” by The Beatles
Kevin 1967-1983
I met Kevin in jr. high school. We weren’t that close but he did go to my Bar Mitzvah. I know this from pictures that we have of him from the blessed and awkward event. Early in our freshman year, we met up at a Rolling Stones concert- my first rock concert. We smoked a couple of bowls together. Neither of us knew that the other one was a partier. Knowing this, we started to hang out more and more. It wasn’t only the weed that made up our friendship, but it felt like we were brothers. We both had sisters in real life and no brothers. So, we filled a missing psychological gap for each other; we were the brothers that the other one didn’t have. During freshman and sophomore years we were inseparable. We both discover the Grateful Dead at more-or-less the same time. We both collected Grateful Dead bootleg concert tapes and albums. We obsessed about this band. I, personally, had a Grateful Dead shirt for every day of the month. I saw my first Grateful Dead concert in the summer of 1982 at Alpine Valley Music Theater, East Troy, WI. with my friend Jim. (Jim is now a Principal Timpanist for an international symphony.) Kevin and I went to what would be my second and his first Grateful Dead concert in the summer of 1983 at The Poplar Creek Music Theater, Hoffman Estates, IL. (Sears bought this land and demolished the open-air music theater. No one knows why. I can only assume that it was hemorrhaging money.) Kevin’s parents would not let him go to both concerts- a Grateful Dead tradition. If they are in town for two nights, you go to both concerts because they are going to be two totally different concerts. Kevin drove a bunch of friends from Northbrook, IL back home after his first Grateful Dead concert. We were in his brown Country Squire station wagon with fake wood paneling. All ten people in the car were on acid. (This is every parent’s dream- a carload of teenagers, taking LSD and driving.) Getting home necessitated driving on the tollway. This isn’t the greatest situation when you are seeing ping-pong balls hitting the car’s hood and laser beams whirling everywhere. We were about to enter the tollway when we saw a huge truck barreling down the road quickly- or so we thought. We had a choice of whether to out race this truck or stay put. This is a big decision when you’re tripping and you have tripping cheerleading squads behind you, half yelling, “go for it” and half yelling, “Stop”. (Our friend Ben was in the back seat pounding his fists on the front seat yelling, “truck, truck, truck!” We may never let him live that down.) In the car was a psychedelic chorus of insane life-or-death confusion. What to do? Kevin was totally cool about the situation; he turned around and yelled to everyone to “shut the fuck up!”- And the car did not move. The truck passed us. It had to be going 90 M.P.H. If Kevin had gone forward ten feet further we would have made the news the next day: “and the decease teenagers are…” Kevin had good street smarts and survival skills. We all got home safely but I am sure that no one got any sleep because of the eyelid movies from the acid. It was risky behavior but we did not realize it at the time and we were no worse for wear-and-tear. So, I had, by the end of he summer of 1983 seen, the Grateful Dead three times and Kevin had seen them once. We were crazy about this band and the uniquely American sub-culture that meant being a Deadhead. Kevin and I were Deadheads in our minds but older, more hardcore Deadheads who saw at least 100 Grateful Dead concerts since 1972 didn’t consider us Deadheads: but we were young. Being a Deadhead was our social identity in and out of the school and we sought out others like us from around the North Shore of Chicago. Deadheads were usually easy to spot- long hair, tie-dyed shirts and/or pants or Jerry Garcia or Grateful Dead clothing, patches and buttons. Eventually, there were a bunch of us hanging out, forming bands, trading bootleg tapes and going to concerts.
Yes, Kevin and I got into drugs far too early in our lives. We weren’t serious juvenile delinquents- no problems with the police- but we were surely slackers. Schoolwork seemed to be a waste of time and it was filled with useless and pointless knowledge. We scoffed at authority and we hated high school. For me, it just didn’t fit my learning style and it felt like a prison. We didn’t take advantage of any of the benefits of going to a top-notch high school. We were too busy wasting time (smoking weed and drinking beer) and we accepted that a “B-” was a good grade. Besides we were having fun. We couldn’t believe that there were actually students in our high school that studied five hours a night. Dorks! And they became doctors or now rule corporate America with their high paying, high power jobs. Who’s the dork now? College felt like light years away but my attendance to a college was a given. Glenbrook North High School, Northbrook, IL had a student body that was split between the “sportos” and the “freaks”. (This division appears in most of John Hughes’ movies: the high school’s most famous alumnus.) Kevin and I were proud to be freaks. We wore “grunge style” clothing back when it was just called “sloppy”. Half of the freaks were into heavy metal and the rest of us, more-or-less, were into The Grateful Dead. What Kevin and I didn’t know is that half of the people in our crowd would grow up to be mature adults with normal lives and the other half would grow up to have serious problems: prison, hard drugs, mental illness, etc. What I realize now about the freaks is that many of them were Special Education students. We hung out with these people in “freak hall” and at parties and concerts but we did not take classes with most of them. We were in regular classes instead of Advanced Placement classes that we should have been in if we had put effort into school. I did participate, briefly, in the Science Club and I was in Marching Band for a semester. At Glenbrook North, the Marching Band competed nationally. They took this shit very seriously. I, on the other hand, did not. There was no room for improvisation and worst of all is that they made me play the cymbals. Four years of drumming and I played the cymbals with bass clarinet players who couldn’t march with their instruments. It was humiliating. Also, we only knew five songs. So every week, we played the same five songs at the football game and no one in the audience even watched us. It sucked. There was a third group of students at Glenbrook North. Those that were neither “freaks” nor “sportos” were “bandies”. Bandies were a scary, brainwashed, cultist group of musicians that I clearly did not fit in with. (A few of the band members were fantastic musicians and some did go on to have professional music careers.) At the time, I hated it. I was listening to improvisational music and the Marching Band played rigidly timed and scored music with me asleep at the cymbals. I just wasn’t the kind of music I wanted to be involved with and their seriousness about the band took all of the fun out of it. That semester, freshman year, I did get my first hickey on a band trip to Tennessee- from a senior no less. (Hi Donna, if you’re reading this, I’ve gotten my braces off!)
Kevin and I hung out after school almost every day. We listened to the Grateful Dead, talked about girls and smoked weed. Kevin had better luck with the ladies than I did. He was a few girlfriends ahead of me. He played guitar and bass. I played the drums (and cymbals). We jammed often. We beat the hell out of Grateful Dead tunes and did some crappy jams. To us it sounded like a symphony- the only symphony in the world with only a bass player a drummer. Once Kevin tried to sing “Sugaree” by the Grateful Dead and my mom came rushing down the stairs into the basement where we were playing. My mom said, “Kevin, you can’t sing”. He never tried that again. His singing was awful. It was so bad that the two of us laughed our way through the song. I don’t know why, but Kevin and I were always in different bands throughout high school. We would go and see each other’s bands play but we never played in front of an audience together. Maybe this was for the best even through I was a seasoned cymbal player.
Kevin had a wild streak that I did not have. He lived about three blocks from the high school. Whenever there was an all school assembly, which we had no intension of going to, Kevin would throw huge parties after his parents went to work. About fifty to seventy five freaks would cram into Kevin’s apartment. These parties were insane: drinking, smoking, getting stoned and getting laid at 8:00 AM. Kevin always wore a pink Polo shirt whenever he hosted one of these early morning bashes. He was also known for wearing pink Polo shirts on Wednesdays. It was just one of his quirks. In the back of my mind, I worried that one or both of his parents would come back home? How would Kevin explain an apartment packed full of drunk, stoned and naked teenagers to his parents? More to the point how would Kevin like military school? Luckily for Kevin, it never happened. There was no parental interference, whatsoever. He seemed to have good Karma in that respect. So around the time when the assembly was coming to an end, we stumbled back to school. Most of the party’s attendees were inebriated all day. We winked at each other in the hallways during passing periods because we all knew how we spent the morning. Truth be known, I never did like being stoned or drunk at school. So I took it pretty easy at these parties. When we went back to school, Kevin stayed back and tidied up his apartment. Nothing was ever broken or stolen. His parents never found out about the early morning parties Kevin hosted. These parties were legendary.
I know I have painted a pretty ugly picture of Kevin. He had his faults, as did I. However, he was a ton of fun and he didn’t have a bad bone in his body. He didn’t lie or steal or get into fights, as far as I know. He had a great sense of humor which manifested itself in a heavy nasal laugh. He was a friend to many and as we came to learn many loved him. He was hard to dislike. He had a smile that the girls would melt from. The guys thought he was cool too. I cannot emphasize what a great character he had. He was smart and mature for his age. Yes, we did drugs, which wasn’t the smartest way to spend high school. It was not a particularly smart way to drive a car either but we did that too. He made my freshman and sophomore years in high school really enjoyable. Kevin and I always found something to do. He was someone I could always count on and turn to in bad situations. Even though we were doing drugs, we did not do hard drugs- cocaine, heroin, etc. - just marijuana, very occasionally LSD and cheap malt liquor-Old English 800 was our brand. One 40-ounce bottle, which cost $0.99, got one really drunk. Our behavior was obviously not good to even the most casual observer. Looking back, I am not thrilled by my adolescent behavior but we were not alone in developing these bad and risky habits in high school- it is all too common. We may have been naïve risk-takers but we were not bad kids. We were sloppily dressed, slacker, Deadheads who didn’t understand the importance of high school.
One of the funniest things that ever happened involved a bunch of doses of LSD. We had scored a bunch of hits of really good acid on a Thursday. Kevin had never tripped before so he really didn’t know what he was in for. We swore to each other that we would wait until Friday night to take the acid together. Thursday night, at around 7:00 PM, I got a call from Kevin. He said in a whisper, “Man, I am trippin’ so hard!” I said, “Dude, we were going to wait until tomorrow!” Kevin said, “Man, I couldn’t wait. How long does this shit last for?” I replied, “Eighteen hours. You are going to have a fun night. Put a Grateful Dead bootleg in your Walkman, turn off the lights and enjoy the show. See you tomorrow and we’re still on for tomorrow night.”
There is a rumor, a “rule” if you will, that if you take acid one day, if you want to do it again the next day, you had to take triple the amount from the first day. It is probably not true but we thought it was the truth. So we went down to my parents’ basement. A mutual friend of ours, Mike (he’s now a Police Officer.), joined us to be our totally sober leader and trip-master. He was there to make sure Trippy and Dippy did not get killed. I took one hit of acid and following the “rule”, Kevin took three hits of acid. About thirty minutes later, the psychedelics start kicking in- metallic taste in my mouth, two-dimensional objects appeared to be three-dimensional, voices echoed, etc. My goal was to get the hell out of my parents’ house quickly. For some reason, Kevin felt most comfortable in the kitchen talking with my parents!!! Mike, sensing that this could only lead to bad things happening to us, said something to my parents and we were out of the house. We didn’t have our Driver’s Licenses (did I mention we were kind of young?) and therefore we had no cars. Mike had his own bicycle. Kevin and I rode my parents’ beat up, brown, single speed, tandem bicycle. So there were Kevin and I tripping our brains out on a bicycle built for two riding around the psychedelic streets of Northbrook. Laser beams, melting trees and a road that was breathing was my reality. Everything that was illuminated left long extended light beams or “tracers”. I was hallucination very heavily (Did you figure that out yourself, Einstein?). And I can only imagine what was happening in Kevin’s mind. We were having a blast. After a while, the three of us had the great idea to go play in a cemetery. We wanted to go to the oldest cemetery in town. There was a cemetery in Northbrook where the names on the headstones were also major streets in Northbrook: Northbrook’s founding fathers. In order to get there, we had to cross the intersection of Willow Rd. and Shermer Ave. - something we had done 100 times. This was a pretty busy intersection during rush hour and it was dark out. Kevin and I had no way of getting across the street. It was hopeless. There were too many lights and supernatural sounds- and the sea of lights that could mean anything. We were seriously unable to comprehend a green light and a walk sign from a red light and a do not walk sign. There were too many lights, all with tracers, coming from every direction- headlights, stop-and-go lights and hallucinated lights. Kevin and I just looked at each other, smiled, and proceeded to walk into the street. A hand grabbed me from behind and pulled me back. It was Mike. He said,” You idiots, the light’s red.” Kevin and I said together, “Which lights?” We made it to the cemetery. Mike immediately took off running leaving Kevin and me alone. It was time to go exploring. Mike’s plan was to jump out from behind a headstone and freak us out. We were on to him. Even when tripping, when we got near a headstone and we heard Mike giggling, we knew he was going to jump out. Usually we beat him to it- a sort of psychedelic precognition. I have no idea how long we were in the cemetery for. We ended up back at my parents’ house. When we arrived, my parents thankfully went to bed because they thought we were having a sleepover party. That was everybody’s’ excuse to his parents for being gone all night. The three of us stayed up all night, played pinball and quietly listened to music. I wonder if my parents noticed that Kevin and I did not sleep that night. (Not together you sick-o!) Eventually Mike went to sleep- he was sober. Kevin and I had a long way to go before we “touched down”. That’s the one thing about acid is that it lasts too long. After ten hours, enough is enough but it usually lasts eighteen to twenty four hours. Not too bad for a $3 a hit drug- a day and night of insight, fun, laughter, hallucinations and free access to the unused portions of one’s brain.
Freshman and sophomore years went fine, except for our grades which only twits cared about. When junior year came around, Kevin and I saw less and less of each other. I did not, at the time, understand this. We still hung out but it went from everyday to once a week. We did not have girlfriends but Kevin and I drifted apart. On a sunny Friday morning, he picked me up from my house to go to school. He and I chatted with my parents. (Kevin may have snuck a handful of croutons in him mouth- his favorite munchies.) He and I left and smoked a joint on the way to school. One of the few times I was high in high school.
The next day, Saturday, October 22, 1983, my parents came to my place of work- The Northbrook Gun Club, trap and skeet shooting. My mother was crying. I thought that one of my grandparents had died. My mother said to me the last thing I ever expected to hear, “Kevin died early this morning. He was hit by a car while he was changing a flat tire.” I freaked out. I ran around the gun club crying and screaming. I cried for days. Many of our mutual friends came over to my parents’ house to console each other. Someone had some hash and we smoked it right in my parents’ living room with my parents at home. Fuck it! Who cares? It couldn’t get any worse. Everybody knew Kevin and I were like brothers and that I was going to take this very poorly. I was in denial, confused, angry and I had a lot of questions. We went to Kevin’s parents’ apartment. There were adults there, friends and relatives, crammed into their apartment- just like one of Kevin’s early morning parties. No one seemed that upset. I was a wreck and I could not believe how calmly these people were taking such tragic news. At the urging of a friend who was there, we poured ourselves some strong drinks while no one was looking. We went into Kevin’s bedroom. I spotted his only Grateful Dead ticket that he had proudly displayed in a plastic case. I grabbed it and shoved it in my pocket. I still have it today. We went to talk to Kevin’s mother to find out what had happened. She gave us what became the “standard party line”. “He came home at 11:00 PM and we all went to bed. Kevin snuck out of the house around midnight and was driving to Aurora , IL (48 miles southwest of Northbrook!) on a rainy Saturday morning. He lost control of he car. He was trying to change a flat tire and he was hit by a car”. But what the hell was he doing going to Aurora in the early hours of the morning? He had never mentioned Aurora or anyone from Aurora before to me. Then we asked his mother if he was drunk. His mother said that, “the police said that there were no drugs or alcohol in Kevin’ system”. That explanation was laughable. Clearly it was untrue because I smoked pot with Kevin 18 hours before he died. Others had partied with Kevin later that day. There is even a rumor that he had psychedelic mushrooms, too. I pondered the standard party line for years. If I wanted the truth, I was going to have to enquire extensively about what Kevin was really up to. It took years and the circumstances are still not perfectly clear.
When my family and I arrived at the funeral home, Kevin’s car was parked outside. I noticed that he did not have one flat tire. Rather, he had two flat tires and the driver’ side of the car was smashed in. He did not have a flat tire. He had a major accident. This was another clue that the standard party line was false. The funeral home was filled to capacity- freaks, sportos, bandies, parents, family friends and relatives. The tears were flowing and loud sobs were audible. There is nothing more devastating than the loss of child or adolescent. I was a pallbearer. Kevin’s family viewed his body behind a curtain before the coffin was shut and the service began. I regret, to this day, that I did not go behind the curtain to see Kevin for the last time. After the service, I went behind the funeral home and cried uncontrollably. I was inconsolable. Almost everybody at the service went to the cemetery. The funeral procession was nearly two miles long. This was going to be particularly hard for our friend D.J. His father had died when D.J. was in 8th grade. His father was buried at the same cemetery in which Kevin was to be buried. We buried my best friend. In the Jewish tradition, we all shoveled three shovelfuls of dirt into the grave. No one left until the grave was totally filled. For many of us, this was our first experience with death. As teenagers, most of us didn’t have the psychological maturity to cope with this. I didn’t. Senior year, I read Elisabeth Kübler-Ross, M.D’s. book On Death and Dying.
Years went by and I could not reconcile the standard party line with what I thought was the truth. For years I had asked people who knew Kevin what they really knew about Kevin’s behavior when I was not around. It turns out that he was doing cocaine: a drug that quickly gets its claws into a user, makes one a different person in all of the wrong ways and ruins one’s life. One does cocaine until he or she is broke, totally out of cocaine or dead. This explained quite a bit. I had not done cocaine. People that do cocaine hang out with other people who do cocaine because someone probably knows where to get more cocaine- a vicious circle of fake friends united by cocaine. Since I did not fit the bill, Kevin and I saw less and less of each other. He showed me some cocaine once. I could not believe that a tiny bit of powder that got one high for 30 minutes was $25. I took a pass. Several people said that they saw Kevin at cocaine parties where all of the attendees powdered their noses around mirrors and glass tables. As for the stranger in Aurora, I suspect that he was Kevin’s dealer. No one sneaks out of their house to drive a 100 mile round-trip on a raining Saturday morning except to get hard drugs. The night before Kevin died, a bunch of our mutual friends were hanging out in front of the liquor store trying to get some beer. Several people told me that that night KEVIN HAD A GUN. Most likely this was obtained from the stranger in Aurora. Had he become grossly paranoid from cocaine use? Kevin needed a gun as much as he needed a Lear Jet to get to school. It was pointless, dangerous and very disturbing to those around him. No one we knew, with the exception of Army brats, has a gun. No one in high school needs a gun in Northbrook, IL, an upper-middle class community. Had Kevin lost his mind? He died less than three hours after brandishing this gun. He was probably making a cocaine run. I knew that the accident he had was more severe than a flat tire. I saw the car at the funeral home and it was a mess. Kevin probably realized that he was in very deep shit. He was probably craving cocaine, he had a gun, probably drugs or drug paraphernalia with him and he was in a major accident. He probably figured that he was going to jail or his parents were going to ground him until he ready to go to military school. What plagues me is the question: “Did Kevin commit suicide?” Did he deliberately jump in front of a car going at highway speeds to end his self-made problems and the agony of cocaine withdrawal? Had he gone that far downhill from cocaine in the course of six months that suicide seemed to be a viable option? Only Kevin knows which probably means that we will never know. Kevin has left me with a hole right through the center of me. This hole is still healing today. This event made Mike, the future Police Officer, and I closer friends. In fact, Mike is my best friend today and has been for many years. We always get a good chuckle about that night with Kevin and us in the cemetery. Now Kevin is in a cemetery forever and I still miss him. Occasionally, I will visit him. His father died of a stroke years later so he and Kevin are buried next to each other. I always put a rock (a Jewish tradition), roses and a Grateful Dead sticker on Kevin’s headstone. He would have wanted it that way.
Sunday, April 6, 2008
Chapter 2: My Friend Phillip Choe- 1972-1973
Comes a Time
Comes a time when the blind-man takes your hand, says "Don't you see?
Gotta make it somehow on the dreams you still believe."
Don't give it up, you got an empty cup only love can fill,
only love can fill.
Been walking all morning went walking all night
I can’t see much difference between the dark and light
And I feel the wind and I taste the rain
Never in my mind to cause so much pain
Comes a time when the blind-man takes your hand, says "Don't you see?
Gotta make it somehow on the dreams you still believe."
Don't give it up, you got an empty cup only love can fill,
only love can fill.
From day to day just letting it ride.
You get so far away from how it feels inside.
You can't let go cause you're afraid to fall,
But the day may come when you can't feel at all.
The words come out like an angry stream.
You hear yourself say things you could never mean.
When you cool down you find your mind.
You got a lot of words you've got to stand behind.
Comes a time when the blind-man takes your hand, says "Don't you see?
Gotta make it somehow on the dreams you still believe."
Don't give it up, you got an empty cup only love can fill,
only love can fill, only love can fill, only love can fill.
- “Comes A Time” by The Grateful Dead
My Friend Phillip Choe- 1972-1973
I attended first grade at Grove Elementary School in Morton Grove, IL- which is now the police station. Yes, there is police station on School St. in Morton Grove. I guess that law enforcement is more important than education in Morton Grove albeit the student population was noticeably shrinking at the school. There was only one class per grade. The original school building may have been old enough to be significant to the history of Morton Grove. The school building was promptly raised!
During first grade, there was a new boy in our class: Phillip Choe. Phillip Choe was directly from Korea. Ms. Kuhn- a genuine, gray haired, ancient spinster with a negative attitude towards life from the experience- sat Phillip Choe next to me. He had straight, dark black hair, silver dental work and had the subtle odor of kimchee; and he spoke virtually no English. One of the first English phrases he learned was, “I tell teacher” with a thick Korean accent. This, of course, was a good phrase to know when the other kids picked on him. I always stood steadfastly by my friend, Phillip Choe. I wasn’t going to let the “C” students in our class mess with my friend Phillip Choe. Even though our ability to verbally communicate was very limited- almost non-existent- we became very close friends. I’ve always been attracted to unique and off-the-beaten path experiences. Having an immigrant friend that I could hardly speak with fit the bill. Matchbox cars, puzzles, coloring books and model airplanes were our games. This is enough to amuse two six year old boys for hours at a time without us saying a word. We played often. Phillip Choe’s English improved over time. I’m not so sure about his parents’ English. In second grade, his family moved out of the area but close enough that Phillip Choe and I could still remain friends. Sometimes he came over to my parents’ apartment and sometimes my mother would drive me to Philip Choe’s new apartment. We played with Matchbox cars, puzzles, coloring books and model airplanes. We always had a good time. Phillip Choe was a good friend and I enjoyed our times together. I think his mom fed us traditional Korean food. This was my first experience with Korean food which I am still fond of today.
One play time, I went to Philip Choe’s apartment and he looked different. I noticed that his left eye was crossed. I didn’t know what to make of it. Would this happen to me? Nonetheless, we still played with Matchbox cars, puzzles, coloring books and model airplanes. Nothing was different. We played several more times and I noticed that Phillip Choe didn’t look so well. I was not intellectually able to understand Philip Choe’s declining health. So we played. The last time I was at Phillip Choe’s apartment, he gave me a model airplane that was our best success to date. Phillip Choe was kind and generous with a very nice family.
It was Phillip Choe’s turn to come to my family’s apartment. My mother sat me down before Phillip Choe arrived at our apartment. My mother told me that there was to be no roughhousing. I had to play gently with him. I was confused. When Phillip Choe arrived at my apartment, I notice that both of his eyes were crossed. Even worse, I notice that Phillip has a lemon size bump on the back of head and neck. Phillip Choe let me touch it. It was hard and I was very confused. In spite of these perplexing changes, we were back to our usual Matchbox cars, puzzles, coloring books and model airplanes. By this time, Phillip Choe’s English had noticeably improved. I thought that that he was speaking a little slower than normal. We still had a great time.
Shortly thereafter, when I was in second grade, my mother sat me down before school and told me that my friend Phillip Choe had died. I didn’t have the intellectual mechanisms to grasp this. My mother had explained to me that my friend Phillip Choe became very sick and now he was with G-d in heaven. I asked, “Can I play with Phillip again?” My mother, with tears in her eyes, said, “No”. I was deeply saddened but I still didn’t understand. I went to my second grade class as normal. Our teacher, Ms. Campbell, my second favorite grade school teacher, knew about the death of my friend Phillip Choe. I asked to go home about seven times. Each time Ms. Campbell said, “No”. My reasons to go home became perpetually less believable. I started with “I’m sick” and the credibility of my excuses just went downhill from there. Ms. Campbell knew that I was deeply saddened- bordering on depression- but she knew that keeping me in class was for my own good. Life goes on and the universe does not stop because of the death of a person no matter how tragic. Eventually, school was out for the day and I went home. I felt no better about my friend Phillip Choe than I had that morning. My parents tried to comfort me to no avail. How long would I be sad about the death my friend Phillip Choe?
Although I did not go, my parents went to my friend Phillip Choe’s funeral. An open casket funeral for a dead seven year old boy is no place for his seven year old friends. My mother commented many years later that she had never seen such a little boy in a suit.
I had many other friends and I would make more in the future. Eventually, the sadness and even my memories of my friend Phillip Choe faded: like a bad dream after one wakes.
I have an 8 year old nephew Jacob. We play frequently. He is into video games, that I can’t master, Pokemon which I still don’t understand, sports- he’s a great athlete- and music. I bought him a drum set: sort of a passive-aggressive way to annoy, as a joke, my sister and brother-in-law (both of whom I love very much). Jacob and his friends beat the hell out of it. It might be cheaper to buy a new set rather than trying to fix the old set. He also listens to Kraftwerk. How he got to them I’ll never know. He, too, plays with my old Matchbox cars, which my parents saved. One day, while playing with Jacob, powerful memories of my friend Phillip Choe that had been repressed for decades, came flooding back. I’ve now cried a few times for my friend Phillip Choe. This is something I didn’t do enough of in second grade because I didn’t know I was supposed to. Now I have the intellectual mechanisms to think back about the awful tragedy of the death of my friend Phillip Choe. Looking into my nephew’s eyes and witnessing the joys of his childhood, I was reminded of my friend Phillip Choe. How much of life was Phillip Choe cheated out of? His poor parents: how they must have suffered.
Even though my life is filled with wonderful children- a niece, a nephew, cousins, friends’ children and two G-d daughters, all of whom fill my life with joy- I still can’t forget my childhood friend Philip Choe. May he rest in peace and my I find peace of mind to understand the first of my life’s major tragedies. Sadly, my friend Philip Choe would not be the only friend I would bury.
Comes a time when the blind-man takes your hand, says "Don't you see?
Gotta make it somehow on the dreams you still believe."
Don't give it up, you got an empty cup only love can fill,
only love can fill.
Been walking all morning went walking all night
I can’t see much difference between the dark and light
And I feel the wind and I taste the rain
Never in my mind to cause so much pain
Comes a time when the blind-man takes your hand, says "Don't you see?
Gotta make it somehow on the dreams you still believe."
Don't give it up, you got an empty cup only love can fill,
only love can fill.
From day to day just letting it ride.
You get so far away from how it feels inside.
You can't let go cause you're afraid to fall,
But the day may come when you can't feel at all.
The words come out like an angry stream.
You hear yourself say things you could never mean.
When you cool down you find your mind.
You got a lot of words you've got to stand behind.
Comes a time when the blind-man takes your hand, says "Don't you see?
Gotta make it somehow on the dreams you still believe."
Don't give it up, you got an empty cup only love can fill,
only love can fill, only love can fill, only love can fill.
- “Comes A Time” by The Grateful Dead
My Friend Phillip Choe- 1972-1973
I attended first grade at Grove Elementary School in Morton Grove, IL- which is now the police station. Yes, there is police station on School St. in Morton Grove. I guess that law enforcement is more important than education in Morton Grove albeit the student population was noticeably shrinking at the school. There was only one class per grade. The original school building may have been old enough to be significant to the history of Morton Grove. The school building was promptly raised!
During first grade, there was a new boy in our class: Phillip Choe. Phillip Choe was directly from Korea. Ms. Kuhn- a genuine, gray haired, ancient spinster with a negative attitude towards life from the experience- sat Phillip Choe next to me. He had straight, dark black hair, silver dental work and had the subtle odor of kimchee; and he spoke virtually no English. One of the first English phrases he learned was, “I tell teacher” with a thick Korean accent. This, of course, was a good phrase to know when the other kids picked on him. I always stood steadfastly by my friend, Phillip Choe. I wasn’t going to let the “C” students in our class mess with my friend Phillip Choe. Even though our ability to verbally communicate was very limited- almost non-existent- we became very close friends. I’ve always been attracted to unique and off-the-beaten path experiences. Having an immigrant friend that I could hardly speak with fit the bill. Matchbox cars, puzzles, coloring books and model airplanes were our games. This is enough to amuse two six year old boys for hours at a time without us saying a word. We played often. Phillip Choe’s English improved over time. I’m not so sure about his parents’ English. In second grade, his family moved out of the area but close enough that Phillip Choe and I could still remain friends. Sometimes he came over to my parents’ apartment and sometimes my mother would drive me to Philip Choe’s new apartment. We played with Matchbox cars, puzzles, coloring books and model airplanes. We always had a good time. Phillip Choe was a good friend and I enjoyed our times together. I think his mom fed us traditional Korean food. This was my first experience with Korean food which I am still fond of today.
One play time, I went to Philip Choe’s apartment and he looked different. I noticed that his left eye was crossed. I didn’t know what to make of it. Would this happen to me? Nonetheless, we still played with Matchbox cars, puzzles, coloring books and model airplanes. Nothing was different. We played several more times and I noticed that Phillip Choe didn’t look so well. I was not intellectually able to understand Philip Choe’s declining health. So we played. The last time I was at Phillip Choe’s apartment, he gave me a model airplane that was our best success to date. Phillip Choe was kind and generous with a very nice family.
It was Phillip Choe’s turn to come to my family’s apartment. My mother sat me down before Phillip Choe arrived at our apartment. My mother told me that there was to be no roughhousing. I had to play gently with him. I was confused. When Phillip Choe arrived at my apartment, I notice that both of his eyes were crossed. Even worse, I notice that Phillip has a lemon size bump on the back of head and neck. Phillip Choe let me touch it. It was hard and I was very confused. In spite of these perplexing changes, we were back to our usual Matchbox cars, puzzles, coloring books and model airplanes. By this time, Phillip Choe’s English had noticeably improved. I thought that that he was speaking a little slower than normal. We still had a great time.
Shortly thereafter, when I was in second grade, my mother sat me down before school and told me that my friend Phillip Choe had died. I didn’t have the intellectual mechanisms to grasp this. My mother had explained to me that my friend Phillip Choe became very sick and now he was with G-d in heaven. I asked, “Can I play with Phillip again?” My mother, with tears in her eyes, said, “No”. I was deeply saddened but I still didn’t understand. I went to my second grade class as normal. Our teacher, Ms. Campbell, my second favorite grade school teacher, knew about the death of my friend Phillip Choe. I asked to go home about seven times. Each time Ms. Campbell said, “No”. My reasons to go home became perpetually less believable. I started with “I’m sick” and the credibility of my excuses just went downhill from there. Ms. Campbell knew that I was deeply saddened- bordering on depression- but she knew that keeping me in class was for my own good. Life goes on and the universe does not stop because of the death of a person no matter how tragic. Eventually, school was out for the day and I went home. I felt no better about my friend Phillip Choe than I had that morning. My parents tried to comfort me to no avail. How long would I be sad about the death my friend Phillip Choe?
Although I did not go, my parents went to my friend Phillip Choe’s funeral. An open casket funeral for a dead seven year old boy is no place for his seven year old friends. My mother commented many years later that she had never seen such a little boy in a suit.
I had many other friends and I would make more in the future. Eventually, the sadness and even my memories of my friend Phillip Choe faded: like a bad dream after one wakes.
I have an 8 year old nephew Jacob. We play frequently. He is into video games, that I can’t master, Pokemon which I still don’t understand, sports- he’s a great athlete- and music. I bought him a drum set: sort of a passive-aggressive way to annoy, as a joke, my sister and brother-in-law (both of whom I love very much). Jacob and his friends beat the hell out of it. It might be cheaper to buy a new set rather than trying to fix the old set. He also listens to Kraftwerk. How he got to them I’ll never know. He, too, plays with my old Matchbox cars, which my parents saved. One day, while playing with Jacob, powerful memories of my friend Phillip Choe that had been repressed for decades, came flooding back. I’ve now cried a few times for my friend Phillip Choe. This is something I didn’t do enough of in second grade because I didn’t know I was supposed to. Now I have the intellectual mechanisms to think back about the awful tragedy of the death of my friend Phillip Choe. Looking into my nephew’s eyes and witnessing the joys of his childhood, I was reminded of my friend Phillip Choe. How much of life was Phillip Choe cheated out of? His poor parents: how they must have suffered.
Even though my life is filled with wonderful children- a niece, a nephew, cousins, friends’ children and two G-d daughters, all of whom fill my life with joy- I still can’t forget my childhood friend Philip Choe. May he rest in peace and my I find peace of mind to understand the first of my life’s major tragedies. Sadly, my friend Philip Choe would not be the only friend I would bury.
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