What does my 1994 diagnosis with MS have to do with "civil discourse"? Any why do these posts seem out of order?
There are a lot of pressing issues that we face today. Currently we have people who demand some sort of "action" after two idiots set off bombs that killed three and seriously wounded 180 people at the finish line of the Boston Marathon in an act many consider one of "terrorism." Yet we also have 90 percent of the American people who want some controls placed on firearms and the failure of the Senate to garner 60 votes for a pathetically weak bill on background checks.
One issue that is ubiquitous is health care. "Health care," as an issue, is not limited to how we pay for health care—although that, obviously, is a significant part of "health care." A significant number of bankruptcies involve huge medical bills. There are other aspects of health care I wish to address in this reprised series, that are not a part of formal, public, civil discourse.
If you receive a really BAD diagnosis, how to pay for treatment (and, ironically, the bills for the tests and such that brought about the decision that this IS the valid diagnosis; why should I have to PAY for really BAD news?) is only part of the matter. What accompanies that diagnosis and what follows are as significant to the person diagnosed and those who care about him or her as payment of the bill. I have first-hand knowledge of this experience. Hemingway ("omg, he’s comparing himself to Hemingway now"; no, I only quote him. Real hubris would be to compare myself to F. Scott Fitzgerald, a superior writer to Hemingway.) once wrote (or said; could Google it to find out for sure) that a writer only should write about what the writer knows. (I believe he added, "And a writer should know about everything." But that's Hemingway for you.) I know what it is like to have gone through this crap of BAD diagnoses and their aftermath.
Let me be clear: I am lucky. I now can walk. I have all of my faculties (although Paul Ogden and others may voice occasional doubts). There are far worse diagnoses I could have received. But I received a diagnosis of MS. I never had written about it before this series of blogs I ran last year. I wanted to describe that it was like. That is the reason the matters seem out of order. When I wrote them, I did so each day, and wrote what I felt each morning. I did not want to re-order the pieces as I thought the order, haphazard as it was, was of series of pieces that expressed my genuine feelings and memories as accurate as my brain could garner.
How does this tie in to the Mini®? I could not walk when I was diagnosed. The Mini® was sort of a challenge. I also have completed a full marathon. That was in 2001. I have heard it said that a person should do one marathon in her or his life. I did 26.2 miles. I walked it. I always hated running, even when I was on the track team (one year) in high school. I completed that marathon in just under six hours and it was a bear. I agree that if someone can do a marathon—just once—that person should do so, if for no other reason than to understand how crazy it is.
The Mini® became an annual challenge for me. It is an event, the completion of which tells me I am still here and functional. In January, 1994, I could not walk. In 1999 I racewalked the Mini®. The first eight years I completed it in under three hours. I have slowed down the past few years. Last year I did the last three miles in a courtesy bus. Still, I finished it.
The Mini®, since it started in 1978 (I think was the first year; again, I could Google) has become a local tradition. The course itself travels through Indianapolis history. The start goes by the Statehouse. People wind their ways through Haughville and reach the Indianapolis Motor Speedway®. At the end of the race one receives a medal for completion of such a grueling thing.
So that is why, for the next however-many days, I will write about the hospital, the disease itself, and how every year, no matter what, I complete the Mini®. Afterward come a steak and liquid replacement therapy. This is "civil discourse": to discuss important matters in polite, intelligent (again I can sense Ogden wince) and informed fashion. This is something I went through. It is something with which I live each moment of each day. In my first Mini(r), as I walked the last mile on New York Street, I cried. One does not "beat" a disease. I like to think I have learned to dance with MS and then, the music faded and the dancers cleared from the floor, I politely turn to the disease and give it the finger, flip it the bird, however one wishes to describe that immortal gesture.
I hope that as I write about the minuet with MS, and the part the Mini® has played in it, the reader will be informed and find the description helpful, and not excessively boring. This is first-person narrative, however, so if it seems a bit self-centered, that is inherent in the beast.