Monday, June 23, 2008

Put Your Own Baseball Metaphor Here

I thought the worst thing I would ever hear from a doctor was the time I was lying in the operating room in that blissful twilight state they put you in for a routine angiogram, and, in the middle of the procedure, I heard the surgeon say, “Oops.”

And I thought to myself as everything went black, “This does not bode well.”

That was two years ago. But in May, as I sat on the edge of an examining table ready to make a run for the parking lot after several hours of electric shocks and needle pokes all over my body, a neurologist topped it: “You’ve got Lou Gehrig’s Disease.”

Lou Gehrig’s Disease. Motor Neuron Disease (MND). Also known as ALS — amyotrophic lateral sclerosis: I can’t spell it, can’t pronounce it, and absolutely don’t want it anywhere near my person.

If I hadn’t immediately started bawling my head off, I would have explained to him nicely that I am not the ALS type. It is much too melodramatic and exotic for me. It clearly requires much more character and inner strength than I’m capable of dredging up. I’m more the heart attack type. Or the coming-in-10th-in-a-20-car-pile-up on-the-405 type. Or the leprosy type, for God’s sake, where your fingers and nose fall off and you become so yukky they make you live on a tropical island for the rest of your life.

If I absolutely have to die (and I always figured medicine would solve the death issue by the time it was my turn; in fact, I’ve been counting on it) I figured I’d die of something ordinary, quick, and painless. My overall plan had been to feel great for 70- or 80-some years then abruptly keel over. Or even better, get a great night’s sleep and just keep going from there.

I never anticipated getting something incurable, untreatable, lingering, and paralyzing, which robs you of your ability to move, speak, eat, chew, swallow, and breathe, but which—just for laughs—forces you to be completely aware of everything that is happening to you at all times.

Also, if I hadn’t been bawling so hard at that moment, while counselors patted my shoulders and piled informational pamphlets and inspirational books on my lap, I could have at least come up with the snappy rejoinders I thought of a few weeks later, when the shock started wearing off. Such as: “Lou Gehrig’s Disease? Does this mean I can finally hit a major league fast ball?”

(For those of you under 50, the disease is named for Lou Gehrig, a great NY Yankees baseball player and teammate of Babe Ruth, who contracted ALS at the pinnacle of his career, retired from baseball in 1939 when he began losing the use of his limbs, and died two years later in the state described above.)

(Actually, I’m not quite old enough to remember him either, but I saw the movie.)

But I digress. Every case of ALS is different, and the cause of it is a mystery. So, I’m not sure what all to expect, other than it’s downhill all the way, and ... as I accurately surmised at the “Oops” moment ... this does not bode well.

So, I figured I might as well join the rest of the human race and start blogging to kill a little time, since time is busily returning the favor.

The first thing I did when I got home from the clinic was jump on Google and check out Catholic funerals. My husband is a Catholic and I’m not, and I wasn't sure how it worked. I think he and I should be buried together, as I don’t trust him to make it through the afterlife without me there giving instructions. Turns out, the church does allow non-Catholics to be buried with Catholic family members, which I think is very nice. Whew! One down.

Next, I Googled crematoriums. What a rip-off. Nuff said. Nevertheless, it turns out I can afford to die, although just barely.

Next, I clearly needed to write my obit ASAP. I titled it, “ ‘30 Rock’ Fan Dies.” I thought maybe that might get Tina Fey to my funeral, or at least Jack McBrayer. (Alec Baldwin is clearly beyond my reach.) By the time I had typed about 50 column inches of my life story, however, I realized that publishing my obit was going to cost more than my funeral and maybe I’d better leave out the part about that snot in 6th grade who ruined my life for two weeks. Once I started cutting out the really good parts, it got pretty boring and the obit project withered on the vine.

Much as I am doing.

But with the essentials out of the way, I returned to my alma mater (not to brag, but I have an MD degree from the Google School of Medicine) and Googled “ALS bulbar onset,” and discovered to my horror that my life expectancy is in the range of 18 months, give or take 10 minutes.

And I am already at month 28 of my symptoms, way past my expiration date. This whole thing keeps getting better and better.

Then I realized ... OMG ... I’m going to die before “Lost” ends. I’ll never know how it comes out.