May 6, 2004 + Columbus, Ohio
I had felt lousy day and night for a couple of weeks. Most of the symptoms I experienced at that time were well known to me; I had had many of the very same over the years. They pertained to quadriplegia, generally. A host of my rather severely injured spinal cord sisters and brothers complained of these, primarily to each other. The ailments and conditions we discussed were a regular feature of the 'this injury sucks' conversations so enticing to so many of us. Misery loving company, and all that. One dynamic I could almost always count on was an empathetic ear from a kindred paralyzed soul. Make no mistake, however, these times together were by no means invariably, 'Oh, woe is me' sessions. We simply and forthrightly expressed our difficulties and frustrations, such as intermittent bladder infections, medical errors, and buildings without ramps. personal triumphs of accomplishment like, "I learned how to drive and just got my new van" and "I'm going back to college this fall" and declarations of pure joy, "I'm getting married next month" and "I'm going to be a grandfather again in April" were also shared among us. That well-worn old saw, 'We're all in this together' was an unspoken agreement among us.
There certainly were angry unsociable ones who just wanted to be left alone by everybody. We all felt like this at one time or another, so most of the kindred understood. The vast majority was of like mind and lived by one simple truth: you ultimately go through the pain alone, but you share the aftermath. These session provide relief. Succinctly put, "If you see your neighbor carrying something, help him with his load." We readily offered that, one to another, in our highly trusted, tight-knit family.
Back to my personal story. My symptoms included the unpleasant feeling of sitting simultaneously on white hot coals and dry ice. In our circle, this is called 'phantom pain', and is similar to feeling pain in an amputated limb. 'Phantom' because, you recall, I had no sensation from my chest down; 'Pain' because it hurt something awful. Sitting all day and lying all night on fire and ice, fatigue, and an inability to concentrate dogged me without letup. All I could feel and think about was pain, phantom or not. Something had to be done.
My condition notwithstanding, it was a glorious Ohio spring. Days were breezy and balmy, like those, "Yah, Mon, come to Jamaica" commercials. Every shade of the colors of the rainbow seemed to be everywhere, as light appears when viewed through a prism. Ohio State University (OSU) and its environs resembled a lovingly tended arboretum, replete with tropical and local foliage poised to explode into full flower.
People of all ages were happily out of doors, like school children let loose on the playground following lectures on the proper use of the semi-colon. All around me they were walking, jogging, roller blading, skateboarding, sitting, and reading. On the OSU Oval students played every sport imaginable, including cricket, Frisbee and Frisbee golf, flag football, soccer, and body watching. Bikinis, muscle shirts, tank tops and sculpted physiques revealed a long winter of pale skin.
I couldn't enjoy any of it. My usual enchanting 'stroll' on a paved bike path along the river was now an exercise in misery. This path ran by woods, fields, and lawns, waterways, and over an old wooden bridge: scenery to gladden the heart. Not mine, however. The usually exquisite butter pecan ice cream cone tasted like medicine. I didn't look straight into people's eyes because of the pain I'd see reflected there. I was a mess. Through circuitous and unreasonable logic, I figured i would be alright. I had only to hang on a little longer. Don't ask.
When the pain got so bad I was forced to part with my stubbornness, I dragged myself to OSU Medical Center. Despite the agony, I believed I had an easily remedied bladder infection. I had had numerous bladder infections over the years; antibiotics usually took care of the problem posthaste. Perhaps I suffered from an increase in phantom pain, that could be managed with Valium or something. In short, I was not that worried.
This OSU Center was a teaching and (one hopes) learning hospital that sprawled over thirty acres. The Complex was huge. After getting contradictory directions from several well-meaning but misguided people, I eventually made my way to the correct building and room.
The place operated like a military unit. A complex hierarchy of doctors, nurses, administrators, technicians, and aides bustled here and there. Each was recognizable by uniform, carriage, and display of deference. For instance, doctors acted like generals, swaggering about, issuing orders, and expecting swift compliance. At the middle of this pyramid of power were earnest young medical students acting like captains. They were readily distinguishable within the unit.
These students issued tentative orders to subordinates. They invariably wore long white jackets and had stethoscopes on prominent display, as were expensive watches, chest pockets holding costly pens, and note pads. Most were friendly, some excessively so. I guess they were learning bedside manner. The majority looked both self-important and bewildered.
I registered at the desk, hoping the busy receptionist/company clerk would not inquire about social diseases incurred during my Army days. The forms she handed me wanted only perfunctory information, such as my grandfather's middle name. The document asked whether I was or had been crazy (in more subtle language, of course). I had some problems with the crazy question. I courageously wrote "No".
i handed in my completed forms, fibs and all. I was then directed to the waiting area, where several sick seniors and others sat dejectedly with frightened loved ones. One obese woman complained so all could hear,
"I had a sore on my butt the size of a golf ball. I told my doctor
to cut it right the hell out of there if he wanted to. That damn
thing kept me up for days and stunk like that abscessed molar I had
back in '89. My Uncle Abner had a goiter on his neck, size of a
grapefruit. Poor guy; lung cancer and emphysema finally took him
off. He smoked four packs a day for forty years--funny he thought
he'd live forever."
'I'm not that bad off', I thought, 'I'll just get some pills and be out of here in no time'. I waited, reading a ponderous tome for my OSU class, Female Medieval saints. I tried to remain invisible. I didn't want to explain to anyone how I had come to be 'that poor crippled boy. "The Doctor will see you now." I confidently followed my guide into a claustrophobic medical antechamber.
This one resembled all the others: well scrubbed and brightly lit. I gazed at the exam table, jars of supplies, scrapers and gougers, lances and pincers. There were wall charts, of course, issuing dire warnings to the neglectful. Diseases of all kinds were displayed in their grotesqueness. These included intestinal problems galore, including that nasty irritable bowel syndrome, poop related ailments alone took up half the room.
At long last, after several unsuccessful attempts not to visualize that goiter, a nursing student arrived. She was accompanied by a mentor nurse. The student nervously took my temperature and blood pressure. She looked me over like you would a used car.
Not long after these two women left, in walked an attractive physician. She was on the shortish side and very light on her feet, dainty. She had a manner of easy confidence about her; I trusted her and felt drawn to her immediately. I believed I was in good hands. She had auburn hair and glasses to match, and wore the typical long white smock doctors wear. She had a very feminine manner, as if she were Doctor Quinn, Medicine Woman. Like her alter ego, this physician had a marked air of true professionalism. There was nothing frivolous or preoccupied about her.
She looked directly at me, as if trying to size up my condition with one penetrating stare. She then glanced down at her clipboard, which must have been very interesting. She studied it intently, as if taking a critical medical test. "Hmm", she said, "Let's have a look at your abdomen." She felt my stomach area with firm , yet gentle hands. My muscles relaxed, letting go of much of the tightness and pain. She left, telling me someone would be along shortly to bring me a liquid to drink.
Five minutes later, my previous mentor nurse came in with two bottles of milky chalk. I normally gag this stuff down, but this wasn't so bad. I drank it all, then waited. I was shuffled off for a CAT scan, lying on my back looking up at ceiling tiles. I had had this procedure several ties previously, so it was no big deal. I thought, 'So that's how they do bladder exams here'.
CAT scan done, I was lazing in my bed back in the antechamber. I dozed off to hazy dreams of, "Mr. Gill, you have bladder infection that is very treatable. What are you doing Saturday night?" But no, not even close.
The good, fetching doctor walked in reluctantly, without the confident, light steps of her first visit. Her body language told me she wasn't sure this was the room where she wanted to be. She appeared to be concerned. he squinting created wrinkle lines at the corners of both eyes. 'This can't be good', I thought. She leaned over me and looked deeply into my eyes. She said simply, straightforwardly, "Mr. Gill, your scan shows swollen lymph nodes and a swollen spleen. You have lymph cancer."
I was stunned. I felt as if my trusted doctor had just kneed me square in the midsection. The announcement took my breath away, like an elephant sitting on my stomach. I babbled a lot of questions such as, "What does this mean, what do I do now, how bad is it, am I going to die soon?" This all came out at once and sounded like incoherent drivel, as if the words were in the wrong order. I was caught totally unawares, unprepared, and defenseless. Naked.
The doctor said things i heard from far, far away, like echoes from some distant gorge. She used words such as, "Admission, PET scan, biopsy, chemotherapy." She left. I had heard these words before, but never in reference to me. That makes all the difference.
I was totally deflated, confused ,and lonelier than ever. I wrestled with my mortality, sick to my stomach: 'I'm going to die, probably soon. I haven't solved the Great Mystery or finished what I had begun (what this was remains an enigma to me). I am leaving this wonderful world of Sarah, Sam, Jeff, family and friends'. You could almost hear Taps playing in the background.. Right in the middle of this, 'Hey, Ray's getting a raw deal here--Super Bowl of self-pity, in came my deliverer. She was a nurse. She brought me morphine. She injected the Devil 'MORFINA'. Out she went.
With her went the self-pity, the mortality, and the Great Mystery. Now, I know all about, 'Say no to drugs' and junkies and back alleys. Take it from me. Never, I repeat NEVER say no to morphine.
For the foreseeable future, all was well. "Cancer, you say? Who cares? I'm on morphine." I was given a room and put into my bed. I became an instant curiosity: "That interesting quadriplegic lymph case on the third floor." My tongue felt like a huge, unfeeling liver. My jaw seemed to be on Novocain. Ever the trooper, I answered all the questions from somber students with eyes full of 'poor guy, but at least its not me'. I eventually drifted off.
As for the dope, here is my considered opinion. If a person of medicine ever says to you, "I've got good news, bed news and morphine." Respond: "First I'll take the good news, then the morphine, then the bad news". Go easy on yourself.