Facing Loss - Inspirational Stories About People with MS

Excerpted from
When the Road Turns: Inspirational Stories About People with MS
By Margot Russell

I really didn't know anything about MS. What bothered me most was the thought of having "lesions" in my brain. I had come to value my intelligence, to depend on it, and having lesions, it seemed to me, was like being diagnosed with brain cancer. I hit the books and the Internet to learn all I could about MS and the dreaded lesions before Monday morning.

I found myself admitted to the hospital on Monday, after my second neurological exam. Despite a slew of tests, I still did not get an MS diagnosis. The label I received was "post-viral demyelinating syndrome." The doctor said it might never happen again and that I'd probably feel "out of it" for a while, so when I went to our firm's Christmas party and found I could barely function or speak, I left early without thinking much about it. I still had symptoms, but they seemed to be improving every day.

By January, my work had returned to its normal pace; depositions, hearings and settlement conferences all suddenly appeared on my calendar. My first clue that all was not well came when I tried to settle a case on the phone with the opposing attorney. I outlined with her the details of our settlement proposal, responded to her demands and then immediately called my client for approval. The three-minute delay between calls was too long. By the time I talked to my client, I could not remember what I had discussed minutes earlier. My notes made no sense. I called back the opposing attorney, trying to figure out what we had discussed. By the end of the day, I thought the case had been settled, but I couldn't remember the terms. I slept very little that night.

In less than two months, my nineteen years of schooling seemed to evaporate. I started journaling everything I did or said throughout the day. I also wrote down all of the abnormal things that were happening to me. Some of the earlier symptoms had improved, like balance and vision, but I realized that my brain was not working like it had. My memory was failing me, and I became nervous talking to people. I could see the words on a page, but I could not read them. My thinking had slowed, and taking notes didn't seem to prevent the confusion.

I was not at all happy that my doctor was blaming my symptoms on stress. I had lived through many stressful events over the years, and I had never experienced cognitive problems. I decided not to believe the neurologist, and assumed he was just having a bad day. Instead, I made an appointment with my internist. Certainly, my doctor of fifteen years would get to the bottom of these problems and give me some relief.

My internist, however, felt certain that I had MS. He explained that it would probably worsen over time, and that I was suffering from a psychological reaction to its onset. He prescribed Prozac and told me to skip the psychiatrist.

Driving home from the appointment, I found myself in a daze and drove twenty miles past my house. I "woke up" not at all sure where I was, or how to get home. I called my wife from a phone booth, and she immediately came to retrieve me.

I became a psychiatry patient on January 16, 1998. The doctor had a nice office in a high-rise in downtown Chicago. I sat in the waiting room, listening to relaxing music and reading. The doctor opened the door, waved me in to his couch and said. "Good morning." Then he was silent.

I quickly mustered all of my nineteen years of education, three years of law school, two years of judicial clerkships and nearly fifteen years of litigation practice. I tried to convince the doctor that I was not crazy-not even "stressed." I thought I could convince him within an hour that this whole appointment was a mistake, and that my neurologist just needed to run some more tests. As the doctor listened, he scribbled some notes.

At the end of our session, he gave me the name of a neuropsychologist who could arrange a battery of neuropsychological tests. He claimed that he wanted a "baseline" of my neurological functioning. I was skeptical, but I made the appointment anyway; talking to him had actually made me feel better.

My only experiences with a neuropsychologist had been in a courtroom. During a trial, neuropsychologists are often called upon to determine if someone is competent to stand trial. When I showed up at my appointment a week later, I expected to find a dark room with men in white coats. I was wrong again. The doctor greeted me warmly, took me into his office and quietly shut the door. His southern accent was refreshing, after spending most of the past two months dealing with doctors who talked too fast. Without taking any notes, he asked me why I was there. I started from the beginning: "I thought I was coming down with a head cold. . . ."

Eight hours later, I felt as if I were brain dead. The string of tests administered to me were the hardest tests I'd ever taken-harder than all of the LSATs, SATs and ACTs combined. It seemed that every aspect of my brain was explored. I could barely drive home.

I didn't know whether I wanted the results of the tests to be normal or abnormal. I thought that a normal result would mean I was crazy, and an abnormal result would mean I was brain damaged-not a wealth of good choices. When I returned to the psychiatrist's office two weeks later, he said I wasn't crazy. He explained that it had been a very stressful couple of months, and that stress likely affected my memory and some of my cognitive functioning. He complimented me on my coping skills and the strong support at home. He felt that the stress would lessen over time, after a clear diagnosis was reached.

He then read parts of the report to me: "Moderately severe memory impairment. . . . Moderately slowed mental and response speed. . . . Difficulty with nonverbal perceptual skills. . . . Mild word retrieval difficulty. . . . The significance of these findings is that they represent substantial cognitive impairment in memory and mental speed, which will affect his job performance and everyday life adjustment."

I was speechless. I felt terrible, as if someone had taken a knife, opened up my skull and destroyed large portions of my brain. If I hadn't needed a psychiatrist when I met this man, I certainly needed one now. I made an appointment to return in one week.

A litigator's job at a large law firm is defined by stress. I had grown accustomed to having very little sleep, making important deadlines and working on several projects at once. Now, my doctors were advising me to do just the opposite: avoid stress, get plenty of rest, slow down, avoid deadlines and try to work on only one project at a time. I cancelled as many court hearings and depositions as I could.

It wasn't long before I became stressed out anyway. I couldn't sleep. The deadlines kept looming-and it felt as if I were drowning at work. I didn't tell anyone. My colleagues, and even my secretary, thought I had a bad ear infection. In March, I tried to take a deposition. What a mistake.

Reassured that my speech, right hand and balance were all back to normal, I flew to Florida, rented a car and drove to a golf club to take a deposition from a retired distributor for a medical device company. I had spent several hours getting organized and writing out questions.