Microsoft word - sven couch book.doc
At 3 p.m. on October 5, 1989, gazing elusively at my eyes in his dimly lit office in Syracuse, N.Y., Dr. A. William
Wright quietly said five words that changed my life forever: “Sven, you have multiple sclerosis.” As he had done a
number of times before, he delivered his medical diagnosis before either of us sat down. Initially shocked then
startled and isolated, I did not ask him anything and they were the first words he used. My mind and any
constructive thought to counter his finding dissolved to the incurable, the untreatable, and the enigmatic.
My first reaction was dumbfounded emotion: standing—silently awed by a reality too strong to
escape—followed by a numb ache in my throat and neck. Initially I was too upset to question what I thought I just
heard and just sat down. As the words began to register mentally and before I could stifle the indignity of a grown
man crying, a steady flow of tears came and I wept. I knew MS was incurable and could cripple me. I read about it,
previously, in office waiting rooms when I was a U.S. Senate intern, but only in the context of MS happening to
I had never felt as alone as I did then. In real time it was a brief interval—maybe two minutes. Yet it
seemed to drift into a slow and pained future that promised nothing but incessant suffering.
We were in the neurologist’s small, square office, stuffed with medical texts, journals, and marketing
pamphlets. The white-haired Dr. Wright, who would soon retire, greeted me standing beside his desk less than five
feet away and quickly delivered his findings. He damned
my future with a six-syllable curse: Sven, you have mul-ti-
ple-scler-o-sis . . .
It sounded so scientific, so enigmatic and so elusive.
Dr. Wright interrupted my shock to explain to me the rudiments of this “disorder.” MS affects its victims
“differently,” he explained and there is “no known cause.” The disease claims “two times more women than men,
“But you shouldn’t assume the worst,” he said. “You can still live a normal life.” I was so paralyzed by fear
I could not comprehend the unassuming. At that moment the diagnosis and what little I knew about MS overruled
any optimism he encouraged me to feel.
My disease became intimately familiar as a seated Dr. Wright re-examined symptoms with which I was
now plagued, “The double vision should stop over time which may take up to six weeks.” My self-image suddenly
began to change, “A cane may be very helpful to you over time.”
No longer was I just a first-year law student at Syracuse University who enjoyed hunting waterfowl, had
strong vocational prospects, a strong family and an active love life. No longer did I see a wife and two or three
children in my future with me—the accomplished attorney—providing for them all. Now I had to fight an incurable
disease and its ever-present threat of paralysis.
Dr. Wright ordered a magnetic resonance imaging (MRI) scan of my brain the day before, Wednesday,
when for fifty-five minutes I lay motionless, belt-less, shirtless, and shoeless in a tube surrounded by magnets.
He had also done a neurological exam that day. Among other things he scratched the bottom of my foot
with a letter opener, which I felt. He bumped various nerves with a rubber hammer and had me place a finger to my
nose and then his finger, and touch my knee and ankle with the opposite heel—unaware the same simple tests
would—someday, become impossible for my diseased frame.
Following his tests Dr. Wright failed to speculate a diagnosis. Rather, he promised to look at the MRI
results “later,” and discuss them with me the following day. The uncertainty pushed the diagnosis a bit further into
the future, but I did not care; after two referrals and extensive testing, I would wait and read first-year law. That
night I perused cases for two classes—Torts and Civil Procedure—then fell asleep at 11 p.m.
When we met again on Thursday and after he delivered his diagnosis, Dr. Wright said the MRI showed
“white or aged lesions or scars” where T-cells attacked the myelin sheaths around my nerves “months or even years
ago,” suggesting MS had been with me “for quite some time.” He said the double vision I had experienced recently
“How long until there’s a cure?” I asked hopeful.
He hesitated for what must have been thirty seconds then slowly replied: “It’s hard to say. Probably eight .
. . to . . . ten years from right now.”
That seemed like an awfully long time. The wait itself would be a challenge. I was skeptical, and when I
heard that same prediction seven years later in Seattle, I realized it was a convenient rather than realistic answer.
Thankfully treatments have been discovered to begin the cure process. Betaseron (Interferon beta-1b) was approved
in 1995, just six years after my diagnosis. Testing occurs daily among the number of treatments now available. What
started, as research to supplement the physical body and slow its disease progression, is now research to stop the MS
The double vision was what first brought me to an optometrist, Dr. Sally Weisenthal, who examined and
then referred me to Dr. Deborah Friedman, an ophthalmologist at the State University of New York Health Science
Center in Syracuse, who took a second examination of my eyes and optic nerves without suggesting what the
problem was. She forwarded the results to Dr. Wright.
To my credit I lived an active lifestyle and considered myself to be a well-rounded sportsman, whether I
was playing football in college, lifting weights, running, fishing, hunting, skiing, or sailing. I played PAC-Ten
football as a walk-on defensive tackle at the University of Washington in Seattle from 1982 to 1984—ranked
number one in the country for the first seven weeks of my freshman year. I increased my body weight 60 lbs. and
increased my bench press and squat by 100 lbs. each.
Then there were injuries. For example, that previous August at my Uncle Bill’s cabin on Grenadier Island
in Lake Ontario near the mouth of the St. Lawrence River. Uncle Bill’s family used the island all year round for
recreation; water sports were the focus in summer. I was there for a Saturday night bachelor party for my cousin
after a very successful day of fishing for black bass. It rained that night, and during the party I fell four feet off of a
wet porch and landed on my head. Fortunately I hit grass rather than rock and walked away with merely a deep gash
in my forehead—I could have broken my neck. It was a strange fall. I was not that tired and had just begun evening
drinking. While standing on the wet porch I lost my balance—suddenly—and was airborne. It all happened too fast
for me to grab on to anything. I remember, suspended, upside down in mid-air, the feeling of complete
defenselessness. I could not exert any response to avoid the physical fiasco that befell me.
Another odd event occurred on Lake Ontario roughly a month later following a busy Labor Day weekend. I
had just piloted my Father’s thirty-six-foot Frers
yacht alone into the Navy Point Marina at Sackets Harbor from
Henderson Harbor for halyard repairs and was docking the boat without help from anyone. When I jumped to the
land my balance and strength failed me. I fell on directly and bloodied my knees and hands.
This was a fall in my earliest days with MS, which failed to protectively roll on clothed shoulders but ate
the gravel, instead, with exposed fingers and flesh easily torn and bleeding. Looking back I realized those incidents
were probably a hint of what was happening to me physically with MS before the diagnosis. Soon I would learn that
no amount of strength or athleticism would enable me to overcome even the difficulty of walking—one of the many
MS symptoms. And there would be nothing I could simply patch up and repair like that gash in my forehead. MS
could not be fixed and would not heal. It would be with me for the rest of my life, a damning prognosis that could
easily defeat even the hope of a cure.
The symptom, which clearly showed something was wrong, occurred while I was out jogging one
September afternoon with Kurt S. during my first year. We both worked for New York Senator Alfonse D’Amato in
Washington, D.C. I was D’Amato’s personal assistant from March 1988 to June 1989 and Kurt was a legislative
During the academic months at that time Kurt was a second-year student or 2L at Syracuse Law, and he
answered my questions about what I could expect in my first year there: hours reading per day, hours studying, food
to survive so I could read then study. He gave me hundreds of dollars’ worth of Gilberts Notes
, case outlines for the
Kurt wanted to jog daily, and it made a lot of sense for me to exercise with him. It would keep me
physically and mentally tuned despite the fatigue I had been feeling in recent months, and also provided the
opportunity to pepper Kurt with school-related questions. At that point I had all of one month of law school
Mid-way through our run however, I began to see double. I stopped and rubbed my closed eyelids,
expecting to wipe away the twin perception. It did not happen. Everything in my field of vision between 9 o’clock
and 3 o’clock and between 6 o’clock and 12 o’clock had a mirror image.
When I told Kurt about it he sensed this was serious. He explained that if something interferes with the
optic nerve, “which carried image signals from the eyes to the brain,” it probably means “a nerve disorder or brain
tumor.” The tumor could be benign of course. Or it could be “malignant and fatal.”
As I walked in the cold rain back to my brother’s condo on Madison Street I was still seeing double. Two
hours later, after an exhausted sleep, my near-sighted vision improved such that I could read slowly. But my far-
sighted vision was still double and lasted for up to five weeks. In later years, interestingly, double vision always
seemed to strike in autumn, which made me wonder if there might be a correlation between it and the anxiety of
The previous month I met a brunette from South Carolina who sat to my right in our one law-school class
together, Civil Procedure. We struck up a conversation one day and I invited her to the Stones
concert. She accepted.
It was a fabulous show. But when it started I was seeing double again—there were two Mick Jaggers
strutting and prancing on stage, two Keith Richards passively jamming his lead guitar. So I closed my eyes to try
and just absorb the music. That would not last, so I watched in twin the Rolling Stones
. The show commanded
confusion and a headache that would not stop.
Despite such symptoms, I put off consulting a doctor right away partly because of the mad rush of three to
five classes per day and all of the reading necessary to prepare for them. I literally did not have time to fear
anything, as anyone who has attended law school will understand—though on some level I worried that I might not
be able to study and live anything like a normal life if I saw double much of the time.
Also true—there was an element of denial in my reaction to what was happening to me physically. Denial
was one of the weapons I deployed before and after the diagnosis to persevere, to cope with whatever was ailing
me—regardless of how life-threatening it might be—so I could pursue the Juris Doctor
. In effect, any panic I felt
steeled me against accepting MS and the total defeat it portended.
Initially I was a strong believer in The Power of Positive Thinking
, the book by Norman Vincent Peale I
read in high school and that struck me as extremely profound. But ultimately only the experience of living with MS
would teach me how much control the mind truly has over the body. Peale’s philosophy seemed increasingly
exaggerated as my condition deteriorated.
As I considered crippling disability, the power of positive thinking—the strength it could generate to
overcome the worst of disease—was far from my mind. My thoughts were fixed more directly on survival. Graduate
school might be difficult, but I would stick with it. I knew
I could develop the legal skills and graduate. Panic drove
this decision and wrongly so—I did not consider even briefly the cruel reality of a progressive disease I would have
to fight every day for the rest of my life.
I had never felt such isolation. That afternoon after the diagnosis, while walking home, I stopped at Syracuse’s
Christ Church Garden, where most of the annuals were dying amidst the seasonal cycle. I wanted to sit outside in the
cold air and think about my situation, recite the Lord’s Prayer a few times, and search for solace. I knew that life’s
battles were many, and I had faced other tests in my 25 years living of course. But I had never thought about
survival in its deepest sense. Nor, had I confronted anything like this in the past—a terminal disease that would only
Dr. Wright suggested I keep a journal to record the progression of the disease, my decline, and the effects
of medications I soon would be taking. At the outset I resisted that idea, even though I had been writing in a
personal log most of my life. My journal entries considered events of interest, whether they happened personally or
In 1864 Dr. Henry Salter told an asthmatic Teddy Roosevelt, “Organs are made for action, not existence. They are
made to work, not to be. And when they work well, they can be well.” This too suggested the importance of a
positive outlook: organs for action
Franklin Delano Roosevelt’s immortal words to Congress in his first inaugural address in 1933: “…. The
only thing we have to fear is fear itself,” suggested that in my case I could achieve fair health but only if I did not let
fear stand in the way, tears notwithstanding.
“I’ve always been happy. Be happy and you’ll be healthy and live long,” advised physician and author
Bernie Siegel. I now see attaining the former, “happy,” to be a debilitating challenge, for which all I earn is a sick
At this time, I reasoned that the more space I gave to MS, the more space it would take in my life. I read in
the December 1997 Life
magazine a TV evangelist saying, “You’ve lost your legs, but there is a life out there for
you to live. Now live it!” My previous thoughts about living life without legs were in passing; now the threat was
And finally, Mikhail Gorbachev
: “Everybody has to learn from life. The real danger is when you don’t
react to life.” I would have to learn all I could in the world of disability and react to my own disabled experience.
My initial resistance to keeping a journal may partly explain why I also opposed telling others about my
disorder; I did not care to be labeled first as “the man with MS.” By informing them, I would be making more room
for MS in my life instead of sheltering myself from it. To scrawl the slow destruction of my central nervous system
and the resultant suffering seemed to glamorize an issue better left forgot. By the spring of 1990, I would find the
recording of symptoms and attempted treatments to benefit my own attempts to understand and manage this
For example, I could not come right and tell Christina, a law student with whom I shared a brief relationshi
at the time. We just met and did not know each other well, so I felt I would not confide in her everything about this
deeply personal illness. Yet the bed was there and the truth ultimately came out. She heard me thinking out loud: I
jogged and saw double. I still see double
. And in a phone conversation the following day she said an old boyfriend’s
mother had MS—“a bad case of it.” Christina sounded morose as we spoke but urged me “to stay positive!” As I
also believed then, she thought, “Mental strength would control the physical.” However, she also failed to stick
around for the joys of graduate school with disease. In law school I learned any previous strengths I could resort to
had no relevant impact on the progression of my disease.
By early November 1989, Christina had almost completely faded from my life. When I asked her about
getting together again, she replied, “I’m too busy.” We didn’t cook dinner together anymore or talk on the phone
about law school. Eventually we did not even talk or acknowledge each other while passing in the hallway at school.
I could not be absolutely certain she was reacting to my disease; nor did I spend too much time thinking about it.
With or without her, I would then be host to the untreatable or the incurable, which appeared more significant than a
new squabble between lustful graduate students.
After an hour of sitting alone in my dark living room and gazing pensively through the basement window at
the black night I called Mom and Dad. Up till then I gave snippets of information about my symptoms to Dad, the
physician: “Bad balance, double vision, fatigue.” He knew from his own professional experience that they pointed to
MS. The MRI diagnosis confirmed his fears.
George Glynn Couch, 61 years old at the time, a gynecologist whose ancestors had come from Cornwall,
England, and Northern Ireland in the mid-nineteenth century. The Glynns came from Ireland; Mary Ann Hall, Mrs.
George Alexander Glynn, came from Belfast. Peter Pidgeon was born according to his British Army papers in
Stratford Parish in County Kildare
. His wife came from Moone
in the next County a few miles West of Kildare
Quinns were from County Down and Antrim
My mother, Pearl Lis Svenson Couch, was 57 years old at the time of my diagnosis. She bore five sons.
Her parents were Scandinavian immigrants. Her mother, Sigrid Teresa Skeie Svens(s)on (1910-1996), came to
Alaska in 1928 from Sandeid (Etna), Rogaland, Norge
My grandfather, Sven Herbert Svens(s)on (1900-1975), immigrated originally to Boston in 1926 from
Hunnebostrand, Bohusland, Sverige
(Sweden), which is across the sea from Oslo and then moved to Juneau, Alaska.
His family hailed from Skåne,
the southernmost district of Sweden just across from Germany and Denmark.
My current neurologist, Dr. James Bowen, stated: “There is clearly a genetic ‘tendency’ towards MS with
northern European peoples being more likely to get MS.” A 1991 study of the prevalence of likely or definite-to-
probable MS from January 1, 1961 at 24.3 per 100,000 to January 1, 1985 at 75.4 per 100,000 in the counties of
in western Norge
. “We consider this increase of MS,” the researchers concluded, “to be due to
alteration in exogenous factors as variation in genetic susceptibility cannot account for the increase in the stable
western Norwegian population.” Dr. Bowen responded: “The bulk of the risk for MS is due to something in the
environment, like a virus for example.” The Neurology
article concludes: “The rise in prevalence/incidence over the
last 20-25 years in western Norway supports the theory that MS is a disease influenced by exogenous factors that
In his 2005 article “Epidemiology and Etiology of Multiple Sclerosis”, John F. Kurtzke, MD, begins with a
definition of multiple sclerosis: “The generally accepted view is that multiple sclerosis (MS) primarily is an
autoimmune disease that is precipitated by undefined environmental factors in a genetically predisposed host.“ The
undefined environmental factors
include the principal causes for MS; the genetically predisposed host
would include those bodily immune systems so infected. Dr. Kurtzke identifies the current gender distribution:
“Woman of all races, whether white, black or other, now have a greater risk of MS than white men with relative risk
ratios of nearly 3 to 1.” The article cites an environmental reason for female predominance. Differing ratios of race
also suggest these differences are based on environmental influences and not genes.
The Migrant series of MS studies presents the thesis that MS is an environmental disease acquired after
childhood and that disease acquisition “requires prolonged or repeated exposure, followed by a prolonged latent or
incubation period between acquisition and symptom onset.” These studies conclude that the MS disease occurs from
a “delimited persistent infectious agent with a long latency and an age-limited host susceptibility.” As such, multiple
sclerosis is believed to be more common than the total numbers indicate or a non-human entity exists.
With the establishment of epidemics, the above assertion is proved. In 1943, among the 26,000 Faroese
Islands of the Kingdom of Denmark, twenty-one patients “constituted a point source type 1 epidemic,”
which “occur[s] in susceptible populations who are exposed for the first time to a virulent infectious agent.”
Inclusion with this epidemic required two criteria: the exposed held two criteria: they were at least eleven years old
at the time of exposure and their exposure lasted minimally two years.
Geographic distributions of MS are answered with prevalence studies, from which surveys from the 1960s
to 1980 indicate a higher prevalence, 30 plus per 100,000, in northern Europe, the northern United States, and
Canada. By 1994, the entire northern Mediterranean basin exhibited a high frequency of MS; Portugal and Greece
exhibited higher prevalence rates: roughly 40 per 100,000. As Kurtzke notes, “Diffusion is a hallmark of this
Dad arrived at 5 p.m. in the basement of the school library where I was reading case law that examined the degrees
of negligence in tort law. The drive to Watertown gave us an hour to talk about the disease—that having MS could
make it difficult “to buy life insurance,” that I needed ”to prepare a will,” that “a life-support system might be
necessary down the line.” These were all first-time issues for me and they opened the door a bit further on an
entirely unexpected and pained future.
The only other person who knew at that point was Mark, my younger brother and condo-mate at Syracuse.
I told him about it the day of my diagnosis because, living that close to me, he would inevitably find out sooner than
later. At least outwardly, Mark reacted as a businessman might react to a negative turn of events—unemotionally,
“Find out what you can do about the disease, then do it!” he said. He strongly believed in the salesman’s
mantra: “Attitude is everything.” Mark eventually realized there was little I could do about MS. Nevertheless, “a
positive attitude,” was best in his view.
But after the diagnosis and as double vision, weakness, and spasticity—symptoms I could not control—took hold, I
realized that MS would shape both my personal and professional futures, which otherwise would have been fairly
predictable. Worse, MS would sink my career ambitions if I let it. I knew that even healthy persons who practiced
law had difficulty coping with the stressful, 80-hour workweeks the profession often demands. How could I possibly
mix my health with my profession? Dr. Wright offered some encouragement when he told me “MS affects people
differently,” so I “shouldn’t assume the worst.” It was premature to think I would become a helpless cripple, though
Still, there was no question that recent events had raised big doubts in my mind. One day about a week
after my visit to Dr. Wright’s office I felt a haunting buzz in my legs brought on by any exertion from my butt down
to my feet; the right half of my face was numb.
By then I had begun wearing glasses instead of contact lenses, as contacts became too difficult to put in,
By the following December I gave up shaving; a clean-cut jaw did not seem worth the risk of seriously
cutting myself with a razor in my shaking hand—which I did a number of times. For the first time in my life I began
growing a beard, at least through the winter months. The hairy, rustic-and-weathered look probably was more
suitable for a life outdoors than in the classroom. But classmates complimented me. Over time even trimming the
beard became somewhat painful, so I pretty much let it grow unkempt.
Though I seemed to be adapting to progressive disability, the demyelination
of my central nervous system
promised only to defeat that fallacy. Often my legs would fall asleep while reading, either separately or both
together. The MS sleeping limb is so gravely dense that feeling of and control over the leg becomes numbly absent.
There were looming mental challenges too. Without fail, I felt depressed after dinner studying law at
night—tired. There was the question of my physical challenges interfering with my mind, of symptoms gaining the
upper hand. By my third year in law school, tests showed a cognitive dysfunction due to MS.
I was quite adept at not allowing doubts to surface, at least at the beginning. For example, about a month
after the diagnosis, I met with the law school dean and dean of students to discuss my health’s failure. As I sat down
before them, they remained standing behind the large dark desk their expressions were grave, suggesting the
“We’ve very sorry for this negative turn of events, Sven.” one of the deans said. “In your brief law school
experience, you appear to be doing fine. We both see you in the library often. But it’s better you learn of this now,
during the autumn of the first year of law school, so you can make the proper career choices.” They offered to help
in any way, yet I detected a not-so-subtle hint, a certain tone of voice that suggested maybe I should reconsider
making law a career, that now would be a good time to exit law school and pursue something else.
Whether or not paranoia was driving my perception of what they were saying, I would not let them or
anyone else determine my immediate future. I replied resolutely, “I’m staying in school!”
Breaks in the academic regimen were helpful. I spent New Year’s of 1990 with brother Bill; his wife Helen, and
children William and Chandler; and family friend Graham A. and his brother “Toad
” (Todd) in Baltimore. The men
hunted Canada geese on Maryland’s Eastern Shore, where we all shot our limits by noon. It was a relaxed time spent
shooting international waterfowl, preparing recipes from plantations of the Chesapeake Bay, drinking specialty
white or red wines, and watching college football bowl games.
As the end of the holiday approached, I wished the first year of law school would end. Most law students
maintained an individual, academic, straight demeanor fixed on their class standing; few would have ever come
right out and said that they also wanted the excessive reading of that first year to end soon. But I knew that all of
Around this time, I began seeing double again. It happened the first time while I was watching television
one evening before I left Syracuse for home and the holidays, and then again while I was vacationing in D.C. where
I saw twin architectural facades in the distance as I walked down the Capitol Plaza compound toward the
Washington Monument. I also felt a warm sensation all over my face. In addition my vision was off-set: When I
looked straight into the mirror, in fact my head was tilted, and when I thought it was tilted, it actually looked straight
Further, my hand suffered a paralyzing spasm, and writing, by spring semester second year, became too
difficult to perform while studying or testing. When I experienced the spastic surge, my fingers extended straight
out, the fingertips extended in an electric-like shock and the thumb indented. I countered this by repeatedly flexing
and stretching the hand muscles backward. These episodes lasted three to five weeks, during which time manual
duties at graduate school were strained then stopped.
Writing notes and test taking were functionally jeopardized because of this hand spasm. By the second year
of law school I was given time-and-a-half on exams to compensate; by third year I was given the class notes taken
Double vision occurred randomly, without any warning. Back at Syracuse, toward the end of January in the
first year, I was playing basketball with guys from the law school when suddenly everything I saw near and far was
double. At first, I thought I would get accustomed to the misconception and would adjust my play accordingly. I
trotted down the court and lunged unsuccessfully for a rebound and then tried to dribble the ball once obtained. But I
was only deceiving myself. I could not run, dribble or catch the ball. I lost my balance, became short of breath, and
my weakness deterred, obviously, my competitive zeal. I felt completely unglued. There was no way I could easily
conceal or disguise the consequences of double vision and walked away from the game, “needing to study.”
For two weeks that month my feet and midsection were numb. This feeling around my stomach and
backside was new and became increasingly dense. It was still there as of Lincoln’s birthday in February, except by
then the numbness extended all the way from my nipples to both sides of my pelvis, both legs, and both feet. My
legs and feet felt leaden. There was a tingling sensation in my toes and in the little finger and ring finger on my right
hand. A week later the three outer fingers on each hand lost feeling. Those on my right hand swelled. By early
A numb feeling blanketed my stomach as the spastic surge inhibiting my pen and vertigo in class
disappeared, at least temporarily. Prednisone, the oral steroid tablets I took, always improved my walking strength
Four fingers on each hand were numb and spasms interrupted my writing as spring exams approached. I
worried about getting through those tests.
I recall, as well, the aching jaw that bothered me for an entire day, the result of grinding my teeth while
I had no conception of where all these sensations were taking me or what new sensations might be in store.
Should I consult the doctor again? Though I wanted to keep an open line of communication with him and have him
think of me favorably, I was inclined not to call, certain there was not much he could do to help me. Throughout
these ordeals, I could not ignore my studies of course. There were precedent-setting cases to read, laws to know, and
legal brief construction to practice. I wrote simply and directly, avoiding the florid style that characterized my
I broke down each case using the IRAC method: issue, rule, application, and conclusion. Depending on the
class, such analysis could take between twenty-five and ninety minutes. I had to be familiar enough with up to a
half-dozen cases per class so I could respond and participate in class discussions. I wrote a page of notes about each
case I read. Midterms and final exams required a detailed structural analysis of each case and its placement to the
law studied. We worked from standardized case-law texts of New York state and federal law. Typically, I would
prepare an outline on a legal pad listing the cases read according to the law studied. Sometimes I would also prepare
three-by-five note cards to better focus my memorization to the issues studied.
At this time I decided to take advantage of my relatively fair health and live a more challenged, rewarding
and satisfying life. I found myself wanting to talk with others who had this disorder, so I contacted the Multiple
Sclerosis Society of Syracuse and learned there would be a support-group meeting on Erie Boulevard in one week.
That was encouraging, to meet others similarly afflicted to discuss ways to cope and succeed regardless. By year
three for me, it became an issue of survival. To survive became my success.
I also decided to take advantage of Syracuse University’s Law in London summer program, which not only
would enable me to earn an additional six credits by attending academic and vocational lectures but also would
provide an opportunity to tour abroad and convalesce.
As it turned out, the support-group meeting where I spotted a wheelchair, three canes, and a person with plastic leg
braces to control falling toes, was pretty much a bust
. Ten sullen participants sat passively, reluctant to talk about
their obviously severe problems. I sensed they felt obliged to meet.
One exception was a guy who—with an easy confidence, a senior’s smile, and unusual candor, and without
trying to gloss over the gross reality of disability—told our group about his own experience and offered practical
advice. His message: “Yes, we’re in bad shape here but not that bad. We’re still alive! So, let’s learn to live with it.”
As an aside, he said tobacco and liquor “wouldn’t help”—he quit smoking and drinking some years after his
I finally consulted Dr. Wright, who gave me a check-up and recommended two medications: Phenobarbital,
a sedative to stop the spasms, and Prednisone, a steroid that would speed up the spasms so they would end sooner.
The idea was to relax my hand so I could write. Actually, the 100-mg Phenobarbital tablets only reduced the
frequency of spasms while making me tired, so Dr. Wright prescribed another barbital: Lioresal. The 10-mg Lioresal
tablets were less sedating and less effective in countering the spasms. But the Prednisone worked well: I took four
20-mg tablets daily for five days, then tapered off to three each day for two days, then to one for two days, and then
one-half tablet for two days. My vision seemed to be fine. I generally felt better on steroids.
I told Dr. Wright that every time I had a spasm, I would experience crippled restraints, which in turn
depressed me. In fact, depression was occurring more often. I kept telling myself I needed to move forward acting as
though the disease did not exist. But that kind of denial was not healthy either.
My health seemed to stabilize by April 1990—whether because of the medications or other factors, I do not
know. My vision was normal. In general, my health was good enough that I could consider the six-credit Law in
London summer school program. Again, I realized that focusing my attention on school probably was a good thing,
though recent muscular spasms in my writing hand made the upcoming final exams in early April appear more
problematic. I really did need to get my writing under control by then. This fear came before the law school’s
Final exams went off well, and over the subsequent weeks I felt pretty decent: no double vision, only
infrequent hand spasms and better balance. While walking I did experience some buzzing in my legs from my waist
down to my feet, but the sensation slowly dissipated when I sat down and relaxed. For a period of weeks, anyway, I
did not think too much about MS. I actually considered myself lucky, resolving once again to proceed with law
school regardless of what the future held. My renewed strength was encouraging evidence; it made me look forward
Looking back, I realized that I came a long way in a fairly short time. But the daily challenges of law
school and progressive disorder of the central nervous system—untreated—promised only to hinder efforts to
overcome and succeed. There was not much room for personal confidence or celebration. Another two years of law
school—and increasing disability and challenges—lay ahead. The days of youthful strength, stamina, and speed
This is the first chapter of
My Sweetheart: One Man’s Trial with Disease, Sven Couch’s memoir about living with
TRIGEMINAL NEURALGIA Dr R L Melvill. FCS SA (Neurosurgery) Trigeminal Neuralgia occurs as an intense lancinating pain which shoots into the face. The pain may occur in a fairly small area of the face or it may spread rapidly over a fairly wide area, but is always confined to the face. (That is, to the distribution of the Trigeminal nerve.) Pain which spreads across the mid-line, over
Gender differences in drinking patterns and alcohol-related problems in a community sample in Sa˜oPaulo, BrazilCamila Magalha˜es Silveira, Erica Rosanna Siu, Yuan-Pang Wang, Maria Carmen Viana, Arthur Guerra de Andrade, LauraHelena Andrade . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 205Postmort