In Their Own Words

In each issue of the Journal, we will bring you a column that presents the experiences of our members.  Their stories are presented In Their Own Words by way of letters they have sent us.  We are most appreciative of their willingness to share their very personal stories.  It is our hope that through the sharing of these experiences, we will all learn something about each other and about ourselves.  It is our hope that the stories will help us all realize that we are not alone.  We are particularly grateful to those people with Acute Disseminated Encephalomyelitis who wrote articles for this publication of the Journal.  You may submit your stories by sending them either by e-mail or through the postal service to Sandy Siegel.  Please be sure to clearly state that The Transverse Myelitis Association has your permission to publish your article.

Conrad Brown
New York
And Then Everything Changed

Dawn came early over Westchester July 1, 1973, with the promise of a beautiful sunny day.  My wife, Meg, and I were up early working on our weekend place in Cortlandt, New York, pruning back overgrown shrubbery and pulling up weeds and small oak and maple saplings that had rooted themselves everywhere on our newly acquired acre and three-quarters. We had breakfast down by the lake, lunch on the picnic table up the hill, and supper under the giant oak on the little patio next to the guesthouse. It was hot; I went in swimming five times that day to cool off.

During the day I was stung by a bee; coughed and spluttered carrying armfuls of chokeberry; heard a loud snap pulling up a little maple tree and thought, “There goes my back, I’m going to suffer tomorrow.”

Satisfied we had accomplished more than we set out to do that day, we slept soundly that night in the guesthouse; we had rented the main house to a New York City couple for the summer.
The following morning, with surprisingly no sign of back trouble, I did my morning exercises.  Then Meg and I drove to the station and took the train into the City.  We parted in Grand Central.  She went on to her job at Macy’s at 341, Street and Broadway.  I took the subway up to 681 Street, carrying the insulated cooler in which we customarily took food out to our place in the country.  After I climbed up out of the subway, I walked four blocks east and two blocks north with that cooler to where we lived on York Avenue, then climbed the five flights to our apartment.  I felt foolish when I got there; I had unnecessarily lugged home a big hunk of ice in the cooler.  I dumped it into the sink. 

Suddenly I began shaking violently all over.  Sitting down on the side of the bed in the bedroom, I called the first doctor that came to mind, a rheumatologist named Murray Silver who had cured me of Reiter's Syndrome several years before.  His secretary was at lunch, and he picked up the phone.  While we were talking, the shaking stopped and was immediately replaced by a feeling like a dark shadow rising slowly up my legs.  I described it to Dr. Silver as it was happening.  He told me to come to his office as quickly as possible.  But when I tried to get up, I discovered I couldn’t stand.  I looked at my watch.  A mere ten minutes had passed since the onset of whatever hit me.

I dialed Meg at Macy’s and asked her to come right home, telling her, “Something awful has happened to me.”

She took a taxi and appeared at my side in minutes.  With Meg half carrying me as I draped myself over the railing, we somehow made it down those five flights and out to the street.  A cab took us the few blocks to Dr. Silver’s office, and the cab driver dragged me in.  Dr. Silver swiftly verified paralysis and called Lenox Hill Hospital.  On being told they had no beds, he pleaded with them, and they finally agreed to put me in the ‘holding room’ where patients were kept who died on the wards.

The events of the next couple of hours are a blur.  I was tapped and prodded and stuck and finally strapped to a table for a test that required a dye to be injected into my spine, which the doctors at Lenox Hill warned me, very matter of factly, might kill me.  They tipped me upside down and took X-rays, but were unable to find anything wrong with me.  I was diagnosed with idiopathic transverse myelitis, “idiopathic” being the word your physician resorts to when he checks you over, ducks into the back room to look up your symptoms in the Merck Manual, and can’t find anything wrong with you.

Eight days in Lenox Hill were followed by seven months’ rehabilitation in what was then called the Institute for Rehabilitative Medicine of New York University Hospital and is known today as The Rusk in honor of Howard Rusk, the physician who founded it.  I learned how to be a functioning paraplegic here.  I learned to walk short distances with braces and crutches; later with two canes.  I used a wheelchair for longer distances, and still do.

Life on a spinal cord injury ward was far from totally glum, however.  When her workday ended at Macy’s Herald Square, Meg would walk from Seventh Avenue all the way across town to the Rusk, east of First Avenue.  She showed up every single night of those long, trying seven months.  For this I am eternally grateful.  Her cheery voice and merry giggle raised not only my own spirits, but those of every paraplegic on the ward.

The men’s shower room at the Rusk was closed for repairs one morning, and all of us men were told to wheel to the women’s facility at the other end of the floor to take our morning showers.  We rolled ourselves down the long hall in our shower chairs under sheets draped around us to hide our nudity.  When we got there we discovered that a couple of the women had not yet finished and were still in the shower stalls.  I don’t know what made me so furious, but I turned right around and went tearing back down the hall toward my room, cursing and carrying on. Just as I was passing the nurses’ station, with nurses and aids looking on, the sheet flew off me, and I made my way back to my room stark naked in a din of feminine laughter.

I am an “incomplete” paraplegic; some messages still get through.  But there is no neurological change since onset, more than 30 years ago.  It is undeniably a nuisance being disabled, and there are painful spasms to contend with, but I’ve long since accepted my condition.  This is who I am today.

Conrad Brown
57 Waltermire Rd
Ghent NY 12075