Getting Transverse Myelitis

Becoming disabled was easy. For some people it is slow and painful; for me it was fast, soft, and total.

On August 18, 2008 I was going up to school to do some work. I threw my bag in the back of the car and drove up to campus. But when I got there a funny thing happened. And not ha-ha funny either. When I went to the back of the car to get my bag, I found I could barely stand. As I walked to my office, it was like I was drunk. I couldn’t put one foot after the other in a straight line. This was early in the day and I was cold sober, so something was very wrong.

I work hard, and I don’t like distractions from my day’s agenda, but I recognized that this was something I needed to look into. After I had finished. So I filed some papers and Xeroxed for twenty minutes, standing up, and holding the machine to steady myself. Then I drove home by myself. This was what sane people refer to as “sheer madness”.

I called the help line for my health care provider. They told me to get to the hospital right away. And not to drive, either. I got a cab and was on my way, to the emergency ward, and to a new life, although I didn’t know that last part yet. August 18 is now my anniversary date; as anyone who has undergone a life-changing incident can tell you, for the rest of your days you are always aware of the date your life changed. And the celebrations aren’t joyous, either.

Once I got to the hospital, they checked me in right away. Given my past history, they figured I had had another stroke, a much worse one this time.

They weren’t the only ones. My wife Rita’s first reaction was anger and fear. She later explained, “I was furious at you when we thought it was a stroke.” How strong were her emotions? Rita put it best when I asked her almost three years later: “Let me tell you, if it was a stroke, we wouldn’t be sitting here today.” Her emotion was blunt, “I felt that you did it to yourself,” because of my bad habits.

But Rita loves me; twenty six years of marriage does that to you. After I called her at work, she “went flying down the stairs,” then briskly informed her boss, “’Bob called. He had another stroke. See you.’” Her strongest memory of that day concerned her drive to the hospital from work. That long journey—she only drives surface streets—normally takes fifty-five minutes. That afternoon she did it in thirty-five, with luck and the grace of God keeping her out of an accident, and the cops from spotting her.

Meanwhile, however, although she didn’t show any of this to me, her mood remained angry. She figured this was payback for my mounting health problems, that I had done this to myself. She loved me too much to complain out loud when I had just gone into the hospital for a bad stroke, but she was really mad. I didn’t hear a hint of any of this.

Three days later reality finally struck. The nurse had just written on my bulletin board that I should contact them at the first onset of paralysis. Good timing. Right after she left, I remember holding up my hand, looking at it as it stiffened, thinking, “that’s interesting”… Immediately, I rang for the nurse.

Worse, much worse, was yet to come. The next day I lost control of my bowels. That destroyed me. Here I was, nearing sixty, a named professor at the university with multiple books from top presses, at the peak of my life and career. And now, I couldn’t keep from soiling my bed. That was something infants did, not people at my age and station.

By then they were taking blood tests galore, and even more important, plenty of MRI’s. I was wheeled out to the first one at 3am on the night that paralysis struck. The stiffness had grown, as well, and now my entire left side was paralyzed.

Some days later, with a lot more tests and scans, while the doctors beat their brains out trying to figure what was wrong with me, the verdict was in. I had transverse myelitis.

I had no idea of what this was, but one shouldn’t feel bad. Neither does anyone else in this world, even if you’re a neurologist. It is that rare. I always figured I was a pretty unique kind of guy; now I was proving it with a vengeance, and not in a way I had ever intended or desired.

The night I found out about TM, alone and in the dark, I sobbed. It would not be the last time.

This is the first post in the series “Bronx Accent” written by Bob Slayton

150pxRobert A. Slayton grew up in the Bronx and is now a professor of history at Chapman University and the author of seven books, including Empire Statesman: The Rise and Redemption of Al Smith.  In 2008 he came down with transverse myelitis and returned to an active teaching and writing career. Slayton has been married to his wife, Rita, for 32 years.  These pieces are excerpts from a memoir of the disability experience he is working on.