Monday, September 03, 2007

And You Think You Have Problems ...

(A continuation of my kvetching about living with early onset Parkinson's Disease ...)

Maybe your mom said this to you too when as a kid you complained too much, too often about not feeling well.. I remember my Mom saying it very clearly and in no uncertain terms:

"Ma, I don't feel vey good."

"What's wrong? Tell me where it hurts," she implored.

"Oghhhh, my stomach hurts really bad," which it did on occasion, but in the great kid tradition of soliciting as much sympathy from Mom as possible, I just might have hiked it up a bit,and it typically worked. Mom would respond with her usual formulae of medications and motherly loving-kindness.

But like every other good thing and-this is the way it should be too-there was a ceiling to what Mom would provide in terms of her smiling nursing bedside manner. When we reached that point she would routinely turn the guilt tables:

"Listen my Dear, you think you've got troubles, you're feeling sick. Sick? I'll show you sick. Let's take a ride to the children's ward at the hospital. You want sick? I'll show you sick!" she said not meanly but in a manner clearly intended to instruct.

And that would pretty much do the trick. Its object ... in the short term: to quiet my kvetching. In the grander scheme of things: to teach me the lesson of context
relativity. In other words, there is always someone sicker than you, whose "dreykop" requires more Excedrin Migraine than yours does. Or maybe you have heard it this way ... "Oh you think you're so tough, that you're the best wrestler on the team and maybe in the conference. Well, I've got news for you. There is always somebody better!

And you know what? It is an unimpeachable truth. There is unfortunately always someone sicker and another who is the better wrestler.

I had to be reminded of this boyhood lesson the other night when Kallah and I were having a spirited exchange. Okay, an argument. We settled the matter but not before I uttered classical expressions of "feel sorry for me" and "will you please come to my pity party."

So what has any of this have to do with Parkinson's Disease? Just this ... you may not know that Parkinsonian symptoms are highly individualized and the severity of its symptomology and resultant disability vary from person to person. One of my severest symptoms is that my spoken speech has been seriously disrupted, so characterized by an annoying and embarrassing stutter, a raspy, low voice and shortage of breath that, when I do speak, often runs out before I have finished my sentence.

As a boy I suffered from a stutter from about age five on, but I managed to control it over the years to the point that it would erupt only on rare occasions, and, as it often seemed, at the most embarrassing of moments ... when I'd be teaching, for example. However, by the time of my adulthood, I had pretty well mastered it. Guess what? The Parkinson's brought it back and in an especially nasty form.

So when Kallah and I were having our "spirited exchange" i was having the darndest time getting my words out.

"And as a matter of fact, I thththththink ththththis, ththththat and the other ththththing about that," after which I pounded the pillows with angry fist frustrated at my inability to stop my tongue from stuttering the "th" dipthong.

"You know what?" I asked of Kallah.

"What?" she shot back.

"There are times when I just wanna slit my throat and be done with it," I blathered out while wallowing in the sludge of self-pity.

"I can't believe you just said what you did," Kallah rebuked me.

The followng day we went to shul on Shabbat morning, and I felt compelled to sit alongside my friend Alan S. who suffers from a far more advanced Parkinson's than I, and as I watched him try to fold his tallis after services, I noticed some familiar difficulties.

It's quite difficult to fold anything if your fingertips can not retain their grip. I saw how tenuously Alan's fingertips were barely hanging on. Now consider this ... when we typically hold things, we grip them by the soft pads of our fingers. Think about it or look at your fingers the next time you are holding on to something and you'll see what I mean. I suffer this symptom too. In place of the pads of our fingers, we hold on by our fingertips very close to the fingernails. There is not a lot of retentive room there. Grasping things becomes problemtic.

So there I stood watching him struggle with this task ordinarily so simple. I went over to greet him.

"Alan, Shabbat shalom."

"Shabbat shalom to you," he replied, but rather than being focused on his words, I was drawn to staring at his right hand that shakes violently.

We sat down together minutes later and chatted together with his wife and Kallah. Again I watched Alan as he struggled to spread a dolip of tuna fish on a cracker, and it came back to me.

"You want sick? I'll show you sick. Come with me to the children's ward at the hospital," I suddenly heard my mom's words again, followed and reinforced by "I can't believe you said what you did," a replay of Kallah's rebuke from the evening before.

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