Are You Sleeping?

Here’s another thing that I don’t understand. How does one know if he has transitioned into secondary progressive MS from relapsing remitting? I have not had an attack since May 2007, as far as I know (and as far as the MRIs show). I have not awakened blind in one eye, or dead in one arm, or unable to defecate, or unable to walk.

Yet these would all be new symptoms, and rather profoundly severe ones. In short, it would be obvious that I had suffered a new attack, and therefore also obvious (as far as I understand it) that I still have RRMS.

But what about the quieter damage that occurs over time? No major events, and yet something may be happening. Am I getting worse? I don’t know. Some days I would believe it to be so, especially where my cognitive functioning is concerned. Do I become simply more aware of a baseline failure to perform, or are these the baby steps my central nervous system is taking on the road of progressive deterioration?

MS is stealthy. It mixes in with the crowd. Where’s Waldo?

Even now I cannot say exactly when it began. Generally I tend to think of events in the spring of 2005 as the beginning. Something had changed significantly enough to cause me to seek answers from my physician. I could not think straight. I would end up in supermarket aisles suddenly wondering why I was there and when I had come there. I would try to open my apartment door with the car beeper. I was light-headed and spacey, drifting in and out of a pervasive fog.

Still undiagnosed, I had my second obvious attack in May 2007. Driven again to see a doctor because of numb and tingling feet and legs, I was sent yet again for an MRI, and this time diagnosed.

You all know the drill.

But here’s the thing--between spring 2005 and spring 2007 I had no noticeable symptoms at all. Clearly something had happened in my body, and had continued to happen, or be, at a low level between times.

Relapsing remitting, right?

And then nothing. One and a half years out now from my second attack. Am I due for a relapse? Have I graduated to SPMS?

As with so many things, not only where MS is concerned, but about life in general, I just don’t know

Fifteen Minutes Of Fame

Everyone gets their fifteen minutes of fame. This is a quote supposedly coming from Andy Warhol, although I think I heard once, somewhere, that it is actually a misquote. In any case, it makes its point.

Kip Kinkle, for instance, was really no one until he showed up at high school, shot some fellow students, then went home and shot his parents. Everyone knew Kip for a short while. After that, he went to a mental institution and kind of faded away.

Tiny Tim had his moment also. Not the Tiny Tim known from Dickens’ A Christmas Carol, but the one who performed on a mandolin, singing Tip-Toe Through the Tulips in a girlish voice on the Merv Griffin Show and the Mike Douglas Show.

Merv Griffin and Mike Douglas. They had their fifteen minutes.

John Lennon and Yoko Ono once co-hosted the Mike Douglas Show.

Later on, the man who killed John Lennon got his fifteen minutes of fame too.

I remember the feeling I had when my first book was published, a feeling of having been extracted from the drab soup of life and held above the bowl, suddenly particular, a bit of substance. For a moment (fifteen minutes or so) I was no longer just part of the broth, but a particular ingredient, something specific. I enjoyed a short period of self definition.

What am I? Who am I?

I am the husband of my first wife. I am the father of my son.

I am the husband of my second wife, the father of three stepchildren who never talk to me again after their mother and I divorce.

I am the man who lives in apartment 44 and has a dog. I am the guy who prefers to sit at the south end of the bar, the guy who shows up at Starbucks every morning with his laptop, looking like he just drooled out of a pasta machine.

Before I know it, I am the husband of my third wife, father of a fourth stepchild. I have a Labrador.

And then along comes multiple sclerosis. Now this is something different, something fairly original. Not everyone has MS, just like not everyone has a million dollars and a Mercedes. There are only 400,000 or so people in American who have MS, give or take (people continue to be born, people continue to die).

Once again, I find myself identified, defined. I am the only one I know personally who has MS. Some may have a mansion, some may have a lofty title, some may have appeared in a movie. I have MS. I am different, unusual, deserving of sympathy, deserving of special attention. I can park in the wheelchair spot. I can sit at the “special” table at Starbucks, reserved for the disabled, without feeling like a sociopath or a criminal. I get to carry a cane without having to feel pretentious.

Because I have MS, I get to take a shot every week that makes me feel like I have the flu.

I get to forget where I’m going, and forget, when I get there, why I am there.

I get to be chosen last for important duties, things that really need to be done.

I get to know upon a morning here and there how it feels to have been run over by a truck without having actually to walk to the highway and throw myself into traffic.

I get to walk around like a drunk, and if stopped by a cop I get to laugh in his face even as he pulls out his breathalyzer.

I get to look forward to progressive secondary MS and paralysis in my limbs and other unpleasant complications.

Well … perhaps this fifteen minutes of fame is not all its cracked up to be after all.

Wow!

Wow, I just read about a guy, a fellow Oregonian, with secondary progressive MS. Eight years younger than I, and all but completely crippled. No use of either leg, no use of right arm. Dude, that's messed up. I guess I take my rather benign relapsing and remitting type way too much for granted. On a positive note, I am already old, and so there is not that much time left for MS to do its thang. Good to be old, so good. It's all relative, right? Damn right.

Still, how old would I have to be for being crippled not to matter so much?

I don't think there's a good age for that. Even at 80, I'd prefer to still be walking on my own two feet.

Seriously. I mean, even when I'm 80, my wife will still only be 56. About my age now.

Gad!

Hold on. I have an idea. Maybe it's best just to live day to day. Yeah?