Tuesday, January 13, 2004

A Diagnosis

"Yet today I consider myself the luckiest man on the face of this earth."
-Lou Gehrig, July 4, 1939

Those were the immortal words the 36-year-old Lou Gehrig spoke to more than 62,000 fans in Yankee stadium. Lou Gehrig died four years later, in 1941. I think Lou, wherever he is, would forgive me for wishing I could go back in time to Yankee Stadium and be the one fan who gave his speech a great big raspberry, a thin rude sound from the bleachers as the echoes of his immortal speech died out.

Today the neurologist told me he believes I have ALS (Amyotrophic Lateral Sclerosis), also known as Lou Gehrig's disease.

Lou would forgive me for giving the raspberry to his speech because he would know that the enmity I feel is directed not at him, not even at my doctor, but rather, at the diagnosis. Further tests are planned, and I will visit a nearby center which specializes in ALS for a second opinion. I intend, either by living despite the diagnosis, or by getting the diagnosis changed as a result of further tests, to give the whole thing the big raspberry. To prove them wrong. This is my course.

ALS is not a thing you want to have:

ALS (Amyotrophic Lateral Sclerosis), also known as Lou Gehrig's Disease, is an incurable fatal neuromuscular disease characterized by progressive muscle weakness, resulting in paralysis. The disease attacks nerve cells in the brain and spinal cord. Motor neurons, which control the movement of voluntary muscles, deteriorate and eventually die. When the motor neurons die, the brain can no longer initiate and control muscle movement. Because muscles no longer receive the messages they need in order to function, they gradually weaken and deteriorate.
The initial signs of ALS may vary. Symptoms include stiffness and increasing muscle weakness, especially involving the hands and feet. The disease eventually affects speech, swallowing and breathing. Because ALS only attacks motor neurons that control the body's voluntary muscles, patients' minds and senses are not impaired.
Approximately 14 cases of ALS are diagnosed each day nationwide. Most of those who develop the disease are between 40 and 70 years of age. The average expected survival time for those suffering from ALS is three to five years. At any given time, approximately 30,000 people in the United States are living with the disease.
The cause of ALS remains unclear, and no cure exists. While there is no drug to prevent or cure the disease, recent breakthroughs have resulted in Rilutek, a drug that modestly slows the progression of ALS.

No, the doctor did not get any special lab results which confirm that I have ALS. I have not done my reading and homework yet, so I don't know if there is one. What he did was look closely at the MRI scans, by going down to the MRI center where they have them on the screens, and then tested my strength and reflexes some more today.

So he could be wrong. But I am not so much interested in proving him wrong as in defying the whole rap, even if I do have ALS. Brave words, sure, and perhaps hollow, but I think a certain amount of anger and defiance is called for here. And cunning.

As I have grown older and tried to mature my rather immature soul, I have cultivated an understanding of human frailty, the windfalls and staggering blows of mere chance (slings and arrows), our mortality, and fallibility, all in an attempt to soften my rather abrasive and fierce core personality. While I intend to remain loving and kind to those close to me, I also intend to develop a full-blown, adolescent, stanking attitude of defiance towards this diagnosis.

Part of that will be exercise. Part of that will be editing the videos of my kids (yes, I did finally order a digital camcorder to allow me to convert the analog tapes to digital, and my wife already has a computer I can do the editing on). I think in the near term (like, immediately), I may take some time off of work. I have considerable creative and organizational powers ... but I need to muster those skills on my own selfish behalf right now. Still, I haven't had much time to meditate on this, regarding what I should do with my time. So your suggestions are welcome.

My wife and I are going to go for a walk, and have a discussion. A friend has come over to have a playdate with our kids. As soon as I got back from the doctor's office, I told my wife the doc's theory, and she handled it with the calm strength and hope I have come to know in her. At this point Lou Gehrig's speech comes to mind again, but this passage I would not raspberry:

"When you have a wife who has been a tower of strength and shown more courage than you dreamed existed - that’s the finest I know. "
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