In 1994, I completely lost use of my legs and could not walk. The reason turned out to be I had an MS. The Indianapolis 500 Festival Mini-Marathon(r) became part of the way in which I dealt with the diagnosis and its aftermath. In the lead-up to the May 4, 2013, the Mini-Marathon---my 15th consecutive---I am reprising the series of blogs I posted last year about the onset of MS, the diagnosis, and aftermath.
One would think that, a diagnosis having been reached, there would be no more need for MRIs. But at 1 a.m., I was wheeled out the door and down the hall to the elevator. Next came the injection of Xanax®. More Pink Floyd-esque magnet-pounding came as the machine scanned the body that lay in its tube. Sleep was impossible with all the noise.
Altogether I had four MRIs. An MRI is expensive. Of course, at 1 a.m. the machine sat in the basement, unused. The place could turn a quick grand by wheeling an uninsured lawyer/patient in for a scan. I was in no shape to protest the procedure. I had no basis for contesting it. Upon return to the room I was unable to get back to sleep. Insomnia is depressing. It also is a frequent effect of MS.
Next morning I was told I could have whatever I wanted for breakfast, per doctor’s orders. A vacuum had been created in the center of my being by the massive doses of prednisone. I ordered four batches of scrambled eggs, as well as bacon, etc. The newspaper lady came around and I bought The Indianapolis Star. I did not care about the articles very much but was drawn to the crossword. I had finished it by the time the food was delivered. I could not scoop the scrambled eggs into my mouth quickly enough. I held each little, institutional, plastic dish to my mouth and shoved scrambled eggs over my eager lips. I washed it all down with grape juice, what appeared to be the only "juice" on the menu. To this day, I will not drink grape juice; too many bad memories.
Sarah got there for her pre-work visit. She said she had hit the hospital’s library and all the books they had dated to the early 1960s. The librarian had apologized. I began reading about this nifty disease with which I had been diagnosed—as that disease had been understood 30 years earlier, before people had landed on the moon, before the Walkman® had been developed, before the first successful heart transplant.
An attendant arrived with a wheelchair and said he was taking me to therapy. I was wheeled down the hall and onto the elevator, and wheeled out again. When I was parked next to the nurse’s desk down there (again in the basement, as I recall), the nurse asked me what I was diagnosed with. I started to talk, but couldn't. Instead, I cried and mumbled "multiple sclerosis." This was a common response for me at first, but the emotional effect gradually wore away. The therapy itself was cool—I was taught how to grab hold of railings and imitate walking. It helped my confidence to be up and moving like that.
btw, the catheter bag was a companion, hooked here and there, as I recall, on a metal tree or the back of whatever wheelchair carried me.
I was allowed whatever I wanted for lunch, and in any quantities I desired. They wanted me to build up my strength, I was told. From what little I had read, though, the use of prednisone was more as an anti-inflammatory than as something jocks would want to take to knock home runs out of parks.
After lunch I was visited by a person from Accounting. She said she had some paperwork for me to sign. Since I did not have insurance, I needed to sign a promissory note. She set it down on the rolling table that crossed my bed. The letterhead was for INB—could it have been that long ago? Again, I could Google the matter and be sure, but as I recall the letterhead had the buffalo and those three letters. I smiled at her and said I was in no mental condition to sign any form of contract that later could be argued to be binding on me. She said it was necessary. I replied that, while it might be "necessary" from her office’s point of view, under the law it would be void and constitute a waste of her time. This was her first visit. She left in something of a huff.
Next to visit was a clinical social worker. No doubt there are clinical social workers who are good at what they do. I have handled a lot of appeals involving termination of parents’ rights with their kids. Of course, that would be later—I did not know that, of course, uncertain as I was, as I lay there, if I ever would work again—and for now, a woman with an empathetic smile sat down next to the bed.
"And how are you this morning?" she asked.
I am wary when someone asks that question with the inflection on that particular word. "Today in clinic we shall learn how first to address the person. Emphasis is on ‘you.’ Make the person think you care."
I said I was fine, considering I just had been diagnosed with a REALLY BAD thing.
"You probably are asking yourself one question," she said, with a great deal of self-assurance.
"Yes," I replied. "How do I pay for this? I don’t have health insurance."
That threw her off. "That’s not my department," she said quickly. "I meant another question."
"I don’t know what that other question would be."
She paused, then said, "‘Why me?’" Again, an italicized pronoun hung in the air.
"I haven’t wondered that at all. I’m an atheist. I had some sort of genetic pre-condition for MS. Conditions arose such that it kicked in. My DNA and environment are what caused it to be ‘me.’"
She seemed confused, and tried to rephrase matters so as to bring our little talk back to ground familiar to her. She finally gave up when I asked her if she knew what I meant when I said "double helix." (The double helix is the shape of DNA.)
Another guy with a wheelchair arrived shortly after. This time I was being taken to "vocational therapy."