Forty years ago I was lying in the Intensive Care Unit of the old Community Hospital (now demolished) in Anchorage, Alaska.
I was 18 years old and I was paralyzed up to my neck.
I could turn my head from side to side and that was it. I couldn't even close my eyelids.
The only reason I was alive was because I was connected to a respirator that breathed for me.
All of it happened very suddenly.
An Odd Tingling...
In Alaska the summers can be short and laden with a kind of northern sweetness. Under the kind auspices of the midnight sun, the alders, birch, fireweed, and other vegetation characteristic of the alpine forest stretch and grow around the clock as if they know that the time of green will soon be a thing of the past.
By the end of July the skies gray over, daily drizzle arrives, and the temperature starts to drop back into the 55-62 degree F range. Leaves on the trees at higher elevations turn yellow and gold even before the first official frost in September, By October comes the day that everyone in Anchorage wakes up, looks out the window, and the world has changed colors again.
I was in the Alaska rhythm that summer forty years ago, moving through the long days like a plant trying to pull into itself the last morsels of the warmth Alaska had to offer. I had a job in a grocery store. In the meat department my union-scale task was to clean up the trimmings the butchers left behind. I had just graduated from high school and I was about to head off to college on the East Coast.
|I saw lots of red that summer at my job...in the form of meat.|
There was a lot to be done and money to be saved and all was well. Even the rain that last week in July seemed more normal than ominous. I remember stepping around the puddles as I got out of the car gingerly and made my way to a doctor's office. I had suddenly started experiencing lower back pain. And my hands and feet were tingling oddly.
I was sent home with pain medication and orders to soak my sore back in the bathtub. The diagnosis was that I must have lifted something too heavy at my job. Well, that was a relief. Take it easy for a few days and I would be back to normal. The rain was keeping everyone in-doors anyway, so I wasn't missing a thing.
Less than a week later it was still raining and I returned to the doctor. The back pain had become excruciating to the point that I was lying in the floor and howling. And I was having trouble with my balance when I tried to walk. I felt generally weak all over.
"I'm sending you to the hospital for tests," the doctor said.
I didn't know it, but when I walked into the hospital I was taking the last steps I would be able to make for the next two months.
|The old Anchorage Community Hospital at 8th and L Streets|
The Ascending Phase
Here's a funny thing about being halfway to one's own funeral. If you're young and no one tells you that you might be dieing, well, then it's not necessarily going to occur to you. And why would the doctors or parents tell me something like that, anyway? I didn't have a terminal disease. What I had was Guillain-Barre Syndrome.
GBS is a rare nerve disease that afflicts 1 in 100,000 people. Technically it is "an acute inflamatory demyelinating polyneuropathy (AIDP)" that is caused by a malfunction in the person's immune system.Often there is a precursor illness in the form of flu or intestinal upset. Afterwards antibodies begin attacking one's own nerve cells and destroying their myelin sheath. When the nerve cells are damaged, paralysis results. In GBS there is a characteristic pattern of ascension from the feet upwards.
Not everyone with GBS is fully paralyzed. And there is other possible good news. The paralysis after ascending is not permanent. It descends. The last body parts to become paralyzed are the first to move again. In most cases, the patient, especially if young, can expect a full recovery. It may take months or it may take longer.
So I was delivered the different flavors of news as I lay in my bed. Good: I didn't have a brain tumor or meningitis. Good: I didn't have polio or MS. Bad: I had a weird nerve disease that would play with turning my body into concrete for an uncertain length of time. Good: When it was done, it would give my body back to me. Bad: I would have to learn to walk all over again. Good: I should return to normal.
Since the trach tube in my throat kept me from speaking I communicated by clicking my tongue. One of my parents held up a chart of the alphabet and I would click when their finger arrived at the letter I wanted. Click, click, click. Click, click, click, click.
That would be my obsessive question from that point forward. When was I going to get out of the hospital? I was no longer in pain, but from the time I woke up around 6 a.m. to when I finally fell asleep late at night I lay in bed yoked to a great slab of boredom. What do you do when there's nothing you can do and you can't even sleep through it?
My obsession with being freed so I could go on to college and the life I had so carefully planned, probably served me well. It shut out darker thoughts, more realistic and chilling ones.
Turn for the Worse
It wasn't long before lying flat in a bed and breathing via a ventilator took a toll on my respiratory system. I developed pneumonia in both lungs.
I had two doctors, a husband and wife team. Dr. Shirley Fraser was my neurologist; Dr. Robert Fraser was a pulmonary specialist. From the beginning Dr. Shirley was the pessimist saying I might not walk for a year. Dr. Robert was the optimist who spoke in terms of a month or so of paralysis.
Later it was Dr. Robert who would tell my parents that on my worst night when I was burning with fever his optimism dissolved. He left the hospital, went home to Dr. Shirley, and said, "I wouldn't give a nickel for that kid's chances."
My parents were providing updates to relatives in the Lower 48. My grandmother in Oklahoma wrote, concerned because she'd heard that "Al got worse..."
I wouldn't hear this story of my taking a "bad turn" until much later after I was home and walking again. The reality of it would be hard to process. At the time I had never thought I was dieing.
It explained a lot of things, though. Why my parents seemed so drawn and serious as they took turns keeping vigil around my bed.
Or the day I asked my father to take a Polaroid photo of me so I could see what I looked like hooked up to the breathing machine. My response when he showed the image to me: "I look like a corpse!" His response: A horrified look on his face.
Or the time when they plugged my trach hole briefly so I could gasp a few words and I said, "I quit!" and Dad stuck his tongue between his teeth and bit down on it, a sure sign he was furious. He let me know in so many words that my quitting was not something he was about to tolerate.
A Descending Phase
So now I know that I am a survivor. If there hadn't been that respirator unit at the hospital (the only one of its kind between Anchorage and Seattle I was told), I wouldn't be writing this today.
If I hadn't had two doctors who became personally and emotionally invested in my case, I might not be here either.
If on the "night of the nickel" as I think of it, something inside me had bounced the other way, I would have closed my eyes, heedless to what was happening, and I would never have awakened from the blackness.
And there were all those cards coming in every day to the hospital. The testimonies that people were praying for me. Does that kind of thing make a difference?
|Cards and notes of concern poured in.|
I've kept them in this box.
My index finger quivered, just the slightest, tiniest amount. Absolute elation. It was as if I'd stepped to the plate and hit a bases loaded home run. It was like I'd gotten 1600 on my SAT.
He told me not to try to do it again until he could call someone to witness this first sign that the nerves were healing.
We celebrated that day.
Not long after that, I was able to breathe on my own and I left ICU. It had been nearly 30 days. An ambulance took me to an "extended care facility," which in this case was an old folks home dressed up in euphemistic terminology. I lived for a month with the aged and blatantly demented and went to daily rehab there to learn to walk again and do other things I'd always taken for granted--like fasten buttons on my shirt, hold a pencil, pucker my lips and whistle.
It would be quite some time before my legs returned to full strength and I could actually do something familiar like run or jump. Still, I would go to college, albeit one year later than originally planned.
In the end my life would turn out well. A couple of books published, then a wife, and a while later a son and a secure job at a university and a comfortable home. It's been easy to forget what was going on back in those days when the sky was dark and I had nothing to do but listen to the rain coming down outside my hospital window and dream of how great it would be to bite into a hamburger and drink a Coke on ice instead of have pink slurry forced down a tube into my stomach.
You'd think that anyone who had survived something like that would become a sort of spokesperson for LIFE! That I would run through the streets shouting, "Wake up, people! You're alive! You can actually walk and talk and make choices. Do you know how exceptional and tentative all that is! Make the most of it!"
I should be like George Bailey in It's a Wonderful Life after the angel has shown him enough that he finally "gets it."
A man transfigured by standing on the brink.
And perhaps I am changed by this experience. Now. All these years later. But it's too much to demand of the young. When we're young, unless circumstances slap us in the face, we always expect to live. We think the world exists to sustain us instead of the other way around. We just don't know any better. You can call that ignorance or fearlessness; I think it's both. - V.W.