Off
North Road
Medical
encounter
March
10, 2005
By
Russell Hoxsie, M.D.
My first personal
encounter with serious illness began on the day President Reagan
was shot in 1981. It was a Monday in March and I had split wood
on the previous Saturday. My legs tingled up to the hips as I walked
the hospital corridor and I thought my old friend, sciatica, had
returned. The orthopedist prescribed bed rest for a week. This was
no small matter for me, home in bed for a week. As I settled into
my lonely couch, the TV was filled with early pictures of the President
being slammed to the pavement by Secret Service men while the sound
of an assassin's pistol filled the air. Well, I thought, at least
this will be an interesting week on television.
I got worse: the tingles rose to the level of my nipples and my
walking became a drunken lurch to the bathroom and to and from the
bedroom. I began to fear something drastic had altered my ecosystem.
The orthopedist shook his head in puzzlement, a bit of behavior
I have often exhibited myself in my office. I realized at that moment
what a frightening gesture this turns out to be for a patient.
“I felt like a leper.”
Before I had time to gather more fear I found myself in one of the
large teaching hospitals in Boston. I use the word teaching with
some irony. It was Easter weekend and staff was short. As the second
and third day rolled around, I wondered when anyone would actually
examine my condition. I thought of all the times I had missed supper
on the Vineyard to complete a newly hospitalized patient's physical
examination. Hardly anyone had laid a hand on me at the Boston hospital.
I felt like a leper. Worse, the tingles had accentuated; my walking
now required holding on to the rails along the corridor. I fainted
once in the bathroom after eating too many figs a friend had brought
me. These were the only medicinals I received during the first few
days. Figs are an extraordinarily effective laxative.
A young resident physician poked his head in my door each morning.
“Anything I can do for you?” he would ask cheerily. I
was so overwhelmed by the whole development of my symptoms since
Reagan had fallen to the pavement, I could only respond that I guessed
not. When he left the room, I wanted to yell after him, “Help,
help!” but my habitual need for self-control prevented me.
Finally, on Easter morning, perhaps because I felt the presence
of some otherworldly help approaching, I blurted out to his cheery
hello that I was worried my walking was getting worse. “Well,”
he said, “Perhaps I'd better take a look.” The hands I
had been waiting for descended on me and then all hell broke loose.
This was not, after all, a figment of my imagination. Something
really bad was affecting my ecosystem. Over the next three days
I almost regretted being so brash to admit something was getting
worse.
I warned another young physician, as we waited in an empty and lonely
x-ray department on Easter morning, that if he were contemplating
putting a needle in my spine as he had threatened, he needed to
know I fainted easily. I asked him if he would please give me some
atropine before doing it. Atropine is a drug with a wonderful capacity
to divorce one's self from his nervous system in such a way as to
avoid undue stimulation in the direction of fainting. “Oh,
you'll be fine. I've done this so many times it's as easy as pie,”
he intoned. I was learning for the first time about not being heard,
about being patronized. I realized then that this doctor hadn't
learned those lessons before either. He left me thinking, there's
no one around here on this holiest of holidays to help out if I
croak. Well, as the needle penetrated my back, easy enough I had
to admit, I recognized the familiar feelings of nausea and cold
clammy skin, which had started their inexorable roll. “I'm
beginning to feel funny,” I said, hoping the doctor at my backside
would recognize my sarcasm at least. I became less and less aware
of my surroundings. But somewhere I could hear many additional footsteps,
all running, and anxious voices requesting things, some tugging
at my arm, now in a very awkward position for a good needle-stick,
and the sensation of intravenous medication rushing to my brain.
The fainting spell began to recede, no thanks to any quick preventive
action by my radiologist friend. I survived. Better still, the x-rays
taken after injection of dye into my spinal canal showed no tumor
or ruptured disc on my spine. Still my walking deteriorated.
A series of intrusive tests followed, including needles, electric
stimulation, brain waves, cat scans and numerous x-rays. The saving
grace for my loneliness and fear was a beautiful young woman who
at the time was dating my oldest son. She lived in the Boston suburbs
and took a shine to me. One day she brought a pastrami sandwich,
hot and tasty from a local deli. She was not bashful about holding
my hand and rubbing my shoulders. For a veritable stranger she was
extraordinarily intimate in a wonderfully healing fashion. One day
she brought in a checkers game and we played for an hour. Another
day she simply brought in one rose from the flower shop downstairs
and put it in a small vase on my bedside table. We talked or, rather
she talked and I listened, basking in this fresh and spontaneous
love affair with my son's girl friend. It was all very chaste.
How to be a patient
The other salvation for me was a special nurse who seemed to have
time freed up just to talk to frightened geeks like myself. She
showed me how to use hot water to brush my teeth, a habit that's
stuck with me ever since. She also held my hand and told me I had
courage to have withstood everything so well. I could see there
was much to learn about being a patient. I wondered at the time
if she considered I was a good doctor. Could she have known that
I actually did understand how patients felt when they were scared?
If I hadn't before, I sure as hell did now. She was especially helpful
after the professor had come in with his retinue on about the eighth
day. In his professorial fashion he said I had the best of all the
possibilities they had considered. You don't have a brain tumor,
you don't have ...well, to tell the truth, I never heard the other
possibilities because the one thing I did hear was that I had multiple
sclerosis.
“But, doctor,” I said with exasperation and anger, “I'm
53. That's too old to be coming down with a first attack of M.S.”
“We've thought of that,” he said back too quickly, “But
we've been seeing it more and more with the sensitive tests we now
use to diagnose it.” He was the professor, after all. I knew
he'd written the chapter on M.S. in a leading medical textbook.
Who was I to question his authority? The treatment was execrable.
My abdomen bloated; my bowels stopped; my appetite disappeared.
Worst, my spirits sank to the bottom of the 25-story building, which
I mercifully departed on day ten.
My worried wife had been at home with the children during my incarceration.
When I returned she was puzzled by my behavior, which was alternately
angry, short tempered, and irritable. I would say to her as we shifted
in bed uncomfortably waiting for sleep that I was afraid I would
wake up incontinent and foolish. Later that would become a gothic
joke between us and a few close friends. It was no joke during the
summer of 1981.
I felt better when I discontinued the medication. The professor
got sick, later retired and I went to see another neurologist. A
good friend introduced me to bee keeping and I stumbled around the
yard lifting honey-laden boxes and staying too long in the hot sun.
Somehow the work was healing. My first day back in the office I
tripped over the leg of my desk chair and, to my partner's dismay,
kicked it in rage to a corner of the room.
“I wish we could get you to channel that anger in a constructive
way,” he blurted out. I felt like kicking him to the other
corner of the room. I still could not sense light objects touching
my feet or legs. I walked as if I were disconnected from the ground.
Gradually sensation returned to a degree and I was able to survive
the day with only one nap after lunch and retiring for the night
at eight in the evening. My M.S. was going into remission, I thought
with some relief. Still, fear of incontinence haunted me.
The end of the encounter is happier. I'll use the word encounter
in a broader sense, meaning the whole affair of the illness because
by early 1982 I was encountering a series of other physicians. I
requested my medical record after being discharged by the professor.
I wanted new doctors to have a ready reference. I was still innocent
and trusting. I remember clearly the winter day when the record
arrived at the end of office hours (I was by this time able to put
in six or seven hours a day of medical work). I ripped open the
large brown envelope with the Boston hospital's address and began
to reminisce over the previous experience as I came across familiar
and forgotten names in the record. As usual, the physicians' handwriting
was nearly indecipherable but I could fill in a lot of blanks. I
found the angel nurse's notes in a back section and my heart warmed
over the experience and the recollection of hot water for teeth
brushing. There was no note about my visitors but I also tingled
in a good way at the recollection of the ministrations of my son's
girl friend. From the summary sheet at the end, the dreaded diagnosis
jumped out at me once more.
A new life ahead
Hold on, I said out loud, there's an additional page stuck in the
back, not in order. It should be in the lab section, probably came
in late after I left the hospital. My serum vitamin B-12 level was
so low as to be unrecordable. At that moment I needed atropine again.
I was suddenly dragged back from the precipice and saw a new life
ahead. My immune system had gone awry and destroyed my ability to
absorb this essential vitamin from my gut. My true diagnosis was
sub acute combined sclerosis of the spinal cord, a condition usually
accompanying pernicious anemia. I had had the poor fortune to develop
the spinal cord problem before the anemia, the latter most often
the well recognized herald of the former. Treatment would be simple:
just a hypodermic given monthly to bypass my stomach and enter my
system through the tissues under my skin. The first month I took
the needle, a miracle transpired. The fatigue, the depression, the
constipation, the sore mouth and tongue, the depression, best of
all, the relief from the sentence of multiple sclerosis, all disappeared.
I no longer read the M.S. newsletter. My legs continue to tingle
but less so and I am careful getting up in the dark because my balance
is poor. That's small potatoes. I could put an end to my medical
encounter with the wrong disease.
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