So I have not touched a biology textbook since 9th grade, when I was 13 – I was in the honors track so I took Biology a year ahead, and I skipped a year in elementary school so I was a year young for my grade. That was 39 years ago. And I am on the research committee of Ride for Life, responsible, with about 10 others, to decide where the research funds are going. And, toward that end, Norma is forwarding a bunch of articles on cells, neurons, and viruses. I have learned that there is a subset of viruses called “prions”, which are similar to proteins. Some of the researchers think that prions might be a culprit that causes ALS.
Let’s flash back to 2003. Evidently, it was in the summer of 2003 that I noticed that something was very wrong, even though I had been treated for asthma a good ten years before, had a clumsy accident in 1993 and broke a toe, had another stupid accident in 1998 that resulted in a nasty sprained ankle, and started wearing a mouth guard in 1991 for jaw stiffness which the dentist figured was due to clenching and grinding my teeth at night. But in the spring/summer of 2003, strange things happened way too often. It didn’t take as long as some others to diagnose me. In the end, I diagnosed myself. You see, doctors don’t like to give this diagnosis because they like to be able to offer hope—a pill, a medicine, a surgery, a change of diet or lifestyle, chemotherapy, physical therapy, any therapy, radiation, or any other treatment.
I made it very simple for Dr. Rubin at Weill=Cornell. I had done my research on the internet, so I said “I have ALS”, and he responded with “Let’s hope not. Call me in two weeks when we get the results of the blood tests. Hopefully, something will come back positive, and we’ll find out you have something else.” ‘
“I hope we don’t find out I have something worse”, I said
“There is nothing worse than ALS”, he answered.
In the next two weeks, I tortured myself. I read everything about ALS. I read how there was no cure and no effective treatment. In the 150 years since ALS first identified in France, and in the 60 years since Yankee Lou Gehrig was diagnosed, they have only come out with one drug – rilutek—and that is supposed to have minimal effect.
I was in my school’s computer lab two weeks later. It was January Regents Exam week, so we weren’t teaching; we were proctoring exams, and I was on one of those long breaks between proctoring assignments. I called Dr. Rubin and got the bad news over the phone., despite the fact that doctor’s are advised, I learned later, to never give bad news like this any way other than face-to-face. My blood tests came back negative – negative for autoimmune disease, negative for Lyme Disease, and negative for anything else it might have been. I didn’t have anything better than ALS. The doctor told me to call Dr. Mitsumoto’s office at Columbia to “get into a drug trial”. His parting words to me were “good luck to you”. I remember going into that combination mode of shock mixed with “let’s forge ahead and see what I have to do”, There were other teachers in the computer lab who knew that I had just come off an important phone call, so I turned to them and said “I have a fatal illness. I’m going to be in a wheelchair and then die”, before I walked out.
I went into my classroom and called Haley. She called back a little while later and said she had called the ALS Association. I guess there is a certain amount of denial that kicks in. You make phone calls, you go on the internet, you do anything you can. The inevitable is not an option at that point. So when, a year later, I had the bathroom renovated, the tub was pulled out and a shower stall put in, but one day I knew I would not be able to get into the bathroom because I would be totally wheelchair-dependent, and a wheelchair wouldn’t fit. On to renovation #2.
Until 2004, I was an independent and active woman -- a former airline sales exec and then a high school educator. Then my body kept betraying me. I was finally diagnosed with ALS/Lou Gehrig's Disease -- confined to a wheelchair and unable to speak. With life at a slower pace, I learned to live a more conscious and mindful life -- buying, eating and other choices. I listen instead of talking, and I observe instead of running and rushing.
Friday, October 19, 2007
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