A couple of recent events compelled me to dig up this blog entry from 2003 -- specifically, the 25th anniversary of the experience in question, and the recent resurgance of Guillain-Barre Syndrome in the news as a result of its being a possible complication from the Swine Flu vaccine.
Here's the story of my own experience. It was originally posted in three installments. I'll condense it down to one here. Enjoy.
October, 1984.
Yours truly was a junior at PSU. Not a particularly good student, I might add, owing mainly to my vastly incorrect choice of majors. Business. Marketing, to be exact.
I figured that my poor grades were due mainly to stupidity. And while that may be true, a more likely villain was that I just....didn't....care. It wasn't until years later that I realized that I never should've been a business major.
A crisp autumn afternoon. I recall it like...well, like I saw a movie about it yesterday, because that's what the whole experience feels like to me. A movie. Like something that happened to someone else.
I was walking across campus, towards the library (for once) I think. I was right in front of the Carnegie Building when I realized that my legs were feeling a little stiff.
Hmm. No big deal. We'd played intramural football the night before. I didn't give it a second thought.
That night was my roommate's 21st birthday. We did a pretty extensive bar tour, and I was pretty well lit. Stumbling, even. Dropping mason jars full of beer.
The walk home was murder. Boy, I'm drunk, I thought, as my legs wobbled under me like a newborn sheep.
Flopped into bed. Woke up the next morning, and went to push myself out of bed. Flopped onto the floor.
Whew, I thought. This is some hangover! I crawled out into the living room. My roomies (all four of them -- yeah, five disgusting guys crammed into a two bedroom apartment) left, one by one, for class. A couple of them stopped to ask if I was ok.
"Yeah, I'm just hungover. I'll hang out and watch tv. Talk to ya later..."
An hour later, and no improvement. I'm weak. Real weak. Barely able to roll over weak. Somehow, though, I manage to push myself up, and stumble down the hall and down the stairs to my roommate's sister's apartment. Her petite roommate is in, and I explain the situation. She drapes my arms around her, and we stumble to the elevator and out into the street. There's a cop there. We tell him what's going on, in hopes of getting a ride to the campus med center. No go.
Jan drags me across College Avenue, up the steep hill at the south end of campus, and into the Ritenour Health Center. They floop me onto a table, and do the usual doctor-y things. No mention of what this could be. They call my parents, two and a half hours away in Monroeville. I lie in a room, barely able to move a muscle, and come to the conclusion that I'm a dead man not walking. 24 hours previously, I was fine. 18 hours, and I was stumbling. 8 hours, and I could barely stand. Now, I can barely move. I follow that trend to its logical conclusion. Dead. I'm dead.
Some friends stop by. They bring comic books. I make a feeble joke. At this point, I'm scared to death, to be quite honest.
My parents enter, terrified but putting on their brave faces. They flop me into the backseat of the car. I'm being transferred to Monroeville. There's nothing they can do for me at Ritenour. Nothing they can do for...and this is the first time I've ever heard these words....
Guillain Barre.
PART 2
I took some dramatic license yesterday. I actually DIDN'T hear the words Guillain Barre on the first day of the illness. Nor the second. I went nearly three days before a diagnosis.
After admittance to Forbes Regional Hospital in Monroeville, I was parked in a private room, and poked and prodded for a day or so. Among the rituals was a mystifying exercise, in which I was told to blow into a plastic tube-y looking thing that contained a number of small plastic balls. Upon blowing, the balls would float towards the top of the tube.
At some point -- day two? Day three? -- it all gets a little blurry -- the word "spinal tap" began to be bandied about. I wasn't too sure what this was, but it didn't sound good. And it wasn't. A sharp needle, jammed into your spine. Wretched. And made worse by a doctor who told me that any motion could cause a slip of the needle and permanent paralysis. I took two things from that. One, I'm already motionless, so how'm I going to move to mess this up? And two, if spinal tap could cause PERMANENT paralysis, then might my current condition not be permanent?
Shortly after the tap, a diagnosis came down. In typical Pittsburgh fashion, the French words were mispronounced by one and all. I was told I had "Gillian Beret." Sounding kind of like a hat that a first mate might wear on a three hour tour. (A three hour tour.)
Ok, so my condition had a name. And most everybody recovers from it. That's good.
What WASN'T good was that by day three, I couldn't move a muscle below my neck. Nothing. I FELT everything, but could move nothing. And worse, the balls weren't going to the top anymore when I blew into the little plastic tube.
Concerned looks from all around. I begin to hear the words "Intensive Care Unit." My dad, in his own inimitable style, tells me that I'm about to be transferred to the "Good Care Place." In retrospect, I should've asked if I was currently in the "Shit Care Place," but believe it or not, for once my smart-assery failed me.
ICU. A significant increase in the beeping, whirring machines. I'm told that I need to go on a respirator. A tube is jammed down my throat. I want to wretch, but when you're paralyzed, wanting to retch and actually being able to retch are two different things.
It's explained to me that Gilligan's Beret is affecting my neuro-muscular system -- and that the diaphragm, the thingy that causes you to breathe, is a muscle. A muscle that is now losing its ability to function.
Things go on like this for a few days. Then as now, I was blessed with an assortment of outstanding friends -- and slowly, word started to get out. Visits start. Mail begins to pour in. I've never told any of my friends this, but they kept me going. My mom told me later that my heartbeat (visible on an overhead monitor) would kick into high gear anytime one of my friends would show up.
I have no idea how long I had the tube down my throat. A few days, I think. Maybe four or five. After two days it was annoying. Three, painful. By day four, it was unbearable. People were spraying Chloraseptic into my mouth about every 15 minutes it seemed, but it was losing the battle. A doctor tells me that a tracheotomy is pretty likely within a day or so, which will remove the tube in my throat and put it into a whole in my neck. I'd have a scar. Mom and dad were concerned that I wouldn't want this.
I mouthed the words "DO IT NOW." The tube in my throat was unbearable. "Wear a tie" was my doctor's prescription for covering up my unsightly scar.
Ever had an itch that you couldn't scratch? Try having a day where you couldn't scratch. Two days. A week. And not only can you not scratch, you can't tell anyone to scratch your itch for you. Eventually, my parents got pretty good at reading my lips. But there are some things you just can't ask someone to scratch for you, even if they are your parents. If there was anything that was likely to drive me insane during my bout of Gilligan's, it was the scratch factor.
A hole is cut in my neck, and a tube inserted and stitched in. The tube doesn't bother me. The stitches, stretching and pulling around an area where I know I have a hole in my neck, do. Every couple of hours, a respiratory therapist comes into my room, rolls me over, and whacks me on the back for a while. Then, a thin tube is inserted into the hole in my neck, sucking up whatever gunk is collecting in my lungs. Once a day -- or was it twice? -- blood gasses are taken. We've all had blood drawn. From a vein, usually in our arms.
Blood gasses are different. To measure the amount of oxygen in your bloodstream, they need to tap an artery. Guess where the closest artery to your skin is?
Think wrist. Your pulse. Once (or twice?) a day, a needle was shoved into my wrist. It hurt. Alot. And it got consistently worse, because after repeated punctures, an artery will toughen up and begin to roll rather than allow itself to be punctured. It soon became torture, as the respiratory therapists began to jab repeatedly in vain attempts to hit the artery. It's actually a good thing I'm paralyzed at this point, because I don't think I'd permit this to take place otherwise.
This was just one of my daily proddings. An immobile patient, lying on his back, is in danger of blood clots. Heparin is the answer. Twice daily jabs of heparin into my belly. I get so that I barely notice.
NEXT: RECOVERY
PART 3
Even amidst the chaos of unexpected total paralysis, hospital life begins to take on routine. Days blur into nights, which blend into days -- but even so, certain events can be counted upon at certain times. Every morning, I would be propped upright for an hour or so -- chest exams, I think. Then, the morning blood-letting out of my wrist. Shots. Back thumpings, followed by neck-tube-suctioning.
Those of you who know me well, know that at least one daily newspaper is a must. My dad was forced into duty as my newspaper-holder-and-page-turner. He'd hold up the paper, and I'd mouth "turn it" when I'd completed a page. On occasion, I'd have a nurse turn my radio on. Julian Lennon's "Valotte" and Wham's "Wake Me Up Before You Go-Go" were big hits that month.
Along with the daily tortures came one unexpected pleasure. I began to learn that as soon as my evening visitors cleared out, I received a nice big jolt of morphine into my I.V. They'd shoot it in, and I could feel the warm happy spread up my arm....down the other arm....down my legs...and then, a great big grin and a sense that paralysis wasn't all that bad. I eventually became a little TOO excited about that evening dose. I mouthed to the nurse "Clear out my visitors early tonight and get me my shot!" She raised her eyebrows, and the shots were administered slowly after that -- resulting in a slower, more diffused and altogether frustrating high.
I suppose I could go on with the tortures, but this saga has dragged on long enough, and my page views have been dismal -- so let's skip over the collapsed lungs incident (the very lowest point of the experience) and get to a day about two and a half weeks after my admittance.
Every day, I received a couple rounds of therapy -- which mainly consisted of a therapist moving my arms and legs around. It felt great. My dad watched the therapists, and would continue the therapy after they'd gone. One morning, prior to therapy, I shocked everyone -- I was able to move my right index finger. Not a complete movement, just a short waggle of about an inch. Not much to you, maybe, but after two plus weeks of complete immobility, it seemed pretty damn miraculous to me.
Actually, the finger WASN'T my first movement below the neck. Several days prior, during a late-night sponge bath, some...er...non-voluntary muscle shifting had taken place. Oh, hell, why beat around the bush? An erection, god damn it. Sweet tap dancing Buddha on a bicycle, a bona-fide boner, right down there where nothing had gone on for weeks! It was actually a pretty poor excuse for one, really -- but to me, it was golden.
So anyway, clearly things were coming around. The day after my finger waggle, I could make a fist. Two days later, and I had my whole right arm. The next day, the left arm came online. And so on.
Gradually, the staff began to get me out of bed -- first, five minutes in a chair. Then, a short walk across the room. The ventillator came off and I breathed on my own. The rubbery feeding tube, which snaked down my nose, was pulled out -- giving the sensatation of expelling the worlds longest booger.
Food. My first meal in nearly a month was a small plastic tub of broth. I think I managed three spoonsful. I progressed to jello, and eventually some pureed meat. Awful. Apparently, the nurses in ICU had taken a shine to me. I'm not sure why -- they'd never heard me utter a word. But still, they liked me, and one of them asked me what food I wanted the most. "Pizza." A few days later, a piping hot pepperoni pie appeared on my tray. Normally, I would've eaten the whole thing -- but two slices was all my tightened tummy could manage.
I was weighed. 115 lbs, down from the 170 or so that I normally carried.
Eventually, I was moved out of ICU to the step-down unit. (Or, in my dad's hierarchy, the "relatively good care place.")
The tubes in my arm are removed. I still have the hole in my neck, along with the device that a ventillator could be hooked into -- which means I'm still unable to talk. Eventually, a "talking" thingy is installed. I can talk, but only if I put my finger over the hole in my neck.
My doctor, he of the fabulous bedside manners, announces that he's going to hook me up to a device to see "if I'll ever be able to walk again." I'm already walking a bit, but apparently complete recovery is still up in the air.
If anyone ever asks you if you want an EEG, my advice is to pass -- especially if, like me, you absolutely HATE electric shocks.
The doctor dabs some jelly on various parts of my arms and legs, then holds a metal wand against them, one at a time. At each stop, the device is turned on, producing a feeling like tingletingleTINGLETINGLEWHOMPWHOMPWHOMPMOTHERF'INWHOMP. It's a series of electrical shocks, and it sucks.
He finishes, and I've never been more relieved in my life. But the torture has just begun -- he has only measured the EXTERIOR nerves. We've gotta go deeper, and for that...
A tiny, sharp needle is inserted into my upper right arm. Then, the juice is turned on, providing the same tingle/whomp sequence as before, only this time on the inside. The process is repeated at ten or fifteen or god only knows how many other points. Hell. This, my friends, is the single most painful moment of the experience.
But, obviously, I got better. Much better. Nealy 100% better. I was thin for a while, and weaker than normal, but after some out-patient therapy, I was back in school in January. Against the doctor's wishes, I might add. And that DID present some challenges -- especially one dismal day when our surly, drunken apartment building squatter confronted me in the hallway, and I had to go to my roommates and ask them to escort me out of the building.
But, that's my story. Today, I have no noticeable after-effects. All told, I was in the hospital one month, and took another month of PT -- all of which shocked the doctors. Based on the fact that Guillain Barre had progressed as far as my diaphragm, they expected a year in the hospital and another year of PT. So I was lucky. Very, very lucky.