Once more—the Mini-Marathon® is Saturday. This is my personal account of why the Mini® is important to me. This year will be my fifteenth consecutive. In 1994, I was diagnosed with Multiple Sclerosis. By the second of nine days in the hospital, I completely had lost use of my legs. Thus walking the 13.1 miles of the Mini® is important to me.
On what was supposed to be my last day in the hospital, I was dressed and ready to go at 7 a.m. The neuro didn’t arrive until 6 p.m. I should have checked out AMA—against medical advice. His advice was not very good. He still maintained "we know very little about MS."
Multiple Sclerosis. This is what we had learned, and what I learned later. I was genetically pre-disposed for this crap with Epstein-Barr, thus vulnerable to mononucleosis. A month after high school mono put me in the hospital with a white blood cell count so high, they thought I had leukemia. During debate nationals, Freshman year at DePauw, I was hit again. Mono had a weird effect on specific T-cells; lymphocytes of one’s immune system. Mono had spun them. Almost 18 years after the latter bout with mono, when I was hit with a bunch of stress, the specific T-cells turned paranoid and thought my central nervous system ("CNS") was a pathogen that had invaded my body. The T-cells attacked the myelin sheath, the fatty coating of my CNS. A common analogy: the myelin sheath is to the CNS what insulation is to electrical wire. Where the myelin was attacked and breached, my CNS shorted out. The T-cells had attacked my spinal cord where it connected to my legs (thus I could not walk) and bladder.
I am not a medical doctor. I have a juris doctorate. What I have learned is anecdotal and not considered medical advice. One should consult one’s personal physician (but not the person who diagnosed me; he was an idiot) before one addressed medical issues. (In law this is called a disclaimer.) However, you are concerned about MS (because you or members of your family have had mono), one course of prevention, according to what I have read, is (1) maintain one’s tetanus shots and (2) take plenty of Vitamin D. That’s no guarantee, but there are few downsides.
MS has a wide range of symptoms and is a "personal" disease: some lose their vision, others have problems with upper-body. There also are different types of MS. I had the most common and, from what I could tell, least onerous: remitting-relapsing.
When finally 6 p.m. arrived, the neuro (who still was such a son of a bitch he would not acknowledge Sarah’s presence in the room) entered, took a perfunctory look at me, and signed my release. He said I was lucky the onset of my symptoms had been so dramatic thus the MS was easy to diagnose. (A few days later I read that, because of the ongoing nature of MS symptoms, in 1994 dollars an MS patient meant $250K over the career of a neurologist.) Finally, after nine days, Sarah was set to wheel my down to where a friend awaited in his car.
The nurses wanted to know if I wanted to take with me the flowers people had sent. I smiled, thanked them, and said no. In general, flowers remind me of funerals. These flowers would have reminded me of the last nine days.
We got home. Max and Moe, our cats, at first did not recognize me, engulfed in, what were to their feline noses, strange smells. They sniffed, and edged way in uncertainty. We ordered the Noble Roman’s® deep-dish sausage pizza I had craved since taking prednisone. I watched color TV. The cats began to understand who I was.
Now all I had to do was deal with life.
Insomnia, a common effect of MS, hit me hard. I would awaken about 2 am, realize the futility of struggle, and work in the study. Later, Sarah dropped me at my office on her way to work. I walked home at lunch, rested, did paperwork, and fixed dinner.
If you want to acquire a good cook, learn the protocols for steroids, get a ‘script for them, and slip them into your other’s morning coffee. (I was not serious; only joking. The pills would need to be ground up too finely; mix them into oatmeal, some other cereal or maybe some muffins.) I was on 100 mg per day of prednisone. Sarah would come home and find I had fixed some new, gourmet (by our standards) dish. I remember, in particular, one night I fixed four stuffed chicken breasts, only the glaze for which took an hour to prepare. She was half-way through her piece of chicken and looked up. I had gone through the other three and asked, "Are you going to eat all of yours?" I packed on (unwanted) weight and killed inflamation with those five little white pills each morning. I also took a pill to protect my stomach lining from the prednisone.
With steroids come mood swings, as well as disqualification from Olympic and professional sports.) I could become Mr. Happy Face, or teary and empathetic, over any topic. I had control over anger, and found it particularly useful to deal with the occasional insurance claims adjusters.
Nearly instantaneous with my arrival home was the arrival of the first of the bills.
This is very important. I mean that, otherwise I would not have written the words in bold. If you are hospitalized for an extended basis, you will get hit with bills from not only the hospital, but several entities: usually every specialist and every service provider is a separate business, and billing, entity. Your creditors can be: hospital, lead doc, radiologist, any other consulting physicians, etc. One of the most important concepts is to keep all these entities in mind.
If, after an extended stay in a hospital and one is uninsured, there are several ways to meet the huge wall of debt. The most obvious is to file bankruptcy (or "bk" as members of my profession call it). Unfortunately, in George W. Bush’s first term as Cheney’s president, many protections provided by bankruptcy laws were taken away. Talk to a bk lawyer to see if this advisable.
A second is to find someone who is rich, strike up a relationship, and hope that s/he will pay all that debt. That’s unlikely, but I thought I’d toss that in.
A third is kind of like what happened here. After I received the first bill from the hospital, I purchased a money order in the amount of Fifty Dollars ($50.00) from the U.S. Post Office. That was the amount I could afford, and I did not want the hospital, in the event it tried to attach any accounts, to know where I banked. Also I did not want the hospital to sit on checks in hope they could get something to bounce. I sent the money order to the hospital with a letter to the effect that this was the first of my weekly payments toward balance of my account and I would continue such payments, and other such sums as they became available, until my account was paid. I also wrote—in tiny letters on the indorsement side of the check, and THIS IS IMPORTANT—the same message about weekly payments. I photocopied the letters and front and back of each payment. Letter and M.O. were sent out certified, return receipt requested, to those lovely people in the finance office at the hospital.
Days and weeks became routine: Go to the office, walk home at noon, fix a nice dinner. I went to court on crutches. I became angry with myself one day because I could not stand when the judge entered the courtroom. She was aware of my condition and gave me a stern look that said get back in your seat. (Judge Reichard was great on the bench.) I had to wear tennis shoes as the bottoms of my feet were numb. I would call court staff and make sure my wearing tennis shoes for legitimate, medical reasons was okay. (Judge Keele, although a Wabash alum, also is great on the bench.)
At home one day I answered a phone from one of those lovely people in the finance office at the hospital. She did the usual collection intro and asked when I would make payment. I said I already had a payment plan. She said the file indicated no such plan. I advised her that according to Indiana law, under the rule of accord and satisfaction, the hospital already had accepted my payment plan. Flustered, she started to lecture me on the law. I asked for a supervisor. That conversation went the same way. I asked to be transferred to the legal department. After two minutes, an appalled person in "legal" asked, "We accepted how many payments?" I told her. She knew they were screwed. I may be an atheist, But I was religious about making that fifty-dollar payment each week in the same format and form, and with a photocopy of the same cover letter. I felt safe from legal action on the balance of twenty thousand dollars ($20,000.00).
We got a copy of an itemized billing and checked the guidelines for authorized procedures. I would call one of those lovely people in the finance office and say, for example, "You cannot bill me for four MRIs when insurance companies only allow two." Thus disappeared nearly two grand they had tried to squeeze from me for unnecessary MRIs. The neuro did not need and had not ordered four pictures of the same thing in three days. Other charges, like $85 for occupational therapy likewise were crossed off.
Each day I waled home carefully, but one day everything was slick, even the street covered with ice. At one intersection, before I stepped into the cross-walk, the driver of a car locked his brakes and slid by. I felt lucky not to have been in front of that car. I looked both ways, saw no traffic, stepped out into the cross-walk, and my feet flew out from under me. I slid a few feet further and was in the center of the lane. I looked up in time to see another car, that just had come around the corner, headed at me. The driver locked his brakes.