Death as Your Advisor

I had this email exhange with a friend.

someone sent this to me today. It was written by a man diagnosed with Lou Gerhig's disease. It's for everyone, all of us.

...I stand at the edge of a life made shorter by illness, and can't help being pulled out of the present moment into mourning my losses, courting my fears.   I sigh over my lost prowess as a hula dancer, I fear the day when I will be unable to lift a spoonful of lime Jell-O to my lips.  But we all stand on the edge.  The present moment is itself an edge, this evanescent sliver of time between the past and the future.  We're called away from it continually by our earthly pleasures and concerns.  Even now you may be thinking it's time for another cup of coffee and one of those blueberry muffins.  Seems it's always time to be doing something other than what we're doing at the moment.  While reading in your chair, you find yourself thinking about last night's argument with your spouse; you're thinking that it's time to rake the leaves, check your e-mail, get some sleep...

The present moment, like the spotted owl or the sea turtle, has become an endangered species.  Yet more and more I find that dwelling in the present moment, in the face of everything that would call us out of it, is our highest spiritual discipline.  More boldly, I would say that our very presentness is our salvation; the present moment, entered into fully, is our gateway to eternal life.

Yeah, thanks for this. It's hard for me to dissect my hostility towards this piece. I guess, for one thing this truth has been said so many times that, for those among us who don't yet get it: Well, xxxx 'em. And this guy with all his artfully crafted moon slivers and silver trim gets on my nerves. What he is saying is true but puh-leeze! Stop gently hammering your hand-crafted jewelry! And then finally I have realized that there is no basis for comparing afflictions. This guy is likely to die faster than I am, so on that basis I don't have the right to criticize the xxxxer. But follow that logic and only the dead, or those who were never conceived, have the standing from which to judge. Only an empty universe like an abandoned heart has grounds to cry out, to complain.

I guess one of my responses to ALS is that it's xxxxing personal. It's however I feel about it and I have every right to feel however I want. I don't give a xxxx about some guy with his reading chair and hula hoop. I only care about people I know. If I knew him, and he put it this way, I'd forgive him. But I don't know him, so in response to his Buddah talk I say: Well, Duh!

I hope this reply does not offend you, although probably it does. I'm not angry, or sad. Just acerbic.

YEAH....I UNDERSTAND WHAT YOU'RE SAYING. AS A WRITER I'M INTERESTED IN HOW WE CAN EFFECTIVELY SAY THIS WITHOUT INSPIRING PEOPLE TO THROW UP. IT'S TRICKY. I THINK IT'S A GOOD MESSAGE BUT CAN OFTEN INSPIRE A KIND OF PUH-LEEZE! IF YOU KNOW HOW TO DO THIS TELL ME.

AND HE DID DIE, FOR THE RECORD

I HEAR YOU AND I'M NOT OFFENDED AT ALL. IF I HAVE A FANTASY ABOUT WHAT PEOPLE SHOULD FEEL OR THINK WHEN THEY'RE SICK THEN THAT'S MY FANTASY. I AM INTRIGUED WITH THIS POSSIBILITY AS DEATH AS YOUR ADVISOR. MY HUSBAND HAS THIS GREAT OLD JACKET THAT I STOLE FROM HIM. IT'S COMPLETELY SHREDDED BUT THERE'S THIS SKULL AND CROSSBONES ON THE FRONT AND THE WORDS, BARELY VISIBLE NOW, DEATH AS YOUR ADVISOR. I GUESS FOR ME IT'S A THOUGHT THAT WAKES ME UP FROM REACHING FOR THE NEXT TASTY TREAT, THE NEXT GOOEY DISTRACTION, WHETHER THAT BE EMAIL OR A DRINK OR BUYING SOMETHING. I LIKED WHAT HE WROTE BUT THAT'S BECAUSE IT SERVES ME NOW.

I'M CURIOUS WHAT SERVES YOU. WHAT HELPS YOU MAKE IT THROUGH?

Pope John Paul II holds his head as he presides over his weekly general audience at the Vatican. The pope urged listeners to think more about the inevitability of death than on becoming richer, more successful or more powerful.


I guess what serves me is that my progression appears to be very slow. If I am correct about that, and the Brasil Effect does not suddenly strike one day, then I have a shot at seeing my kids go off to college. And if I have a chance at that, then I have a chance of being around when the treatment to halt ALS is deployed.

Plus I have always felt that I am a lucky person. I always get what I need (if not what I want), and nothing is ever that bad. I squeeze through.

Plus I have a powerful, visionary form of denial on my side. I constantly believe that I am hitting bottom and the ALS is leveling off, going asymptotic. That sounds like a medical term meaning no symptoms, but it’s not.

So I guess that what serves me is my attitude. I read poetry and novels as a teenager. I thought about death. I learned that life was a wisp, and very precious, and should be appreciated as a blessing. I think it may be biochemical, but my somatic mood usually validates this belief. I pity those people who go through life moaning about their burdens, fretting the next thing, and looking back with regret. They have the wrong biochemicals, and they may know intellectually, what I have written, but their serotonin just does not back them up.

So I don't find myself turning to things that I need to give me stability and make it through. My family, and my life, are my solace and my salvation.

If my progression were faster, or if I had a serious, painful cancer that was wasting me away, necessitating painful operations, I cannot claim that I would be so serene and grateful. I would have some major grief to process really fast. But I feel that, although it might not be pretty to watch, I would be at peace with myself and those who love me before I died. I would get it done.

We Shall See.

...But wait, there's more! Right after I typed "We Shall See," a woman working for the insurance company with which I have filed for long-term disability called. She was pressing the point that the company needs to know what is preventing me from doing my job function for my employer. It seemed to me that they are seeking an angle to deny my claim. She mentioned, not in a threatening way, that their phone conversations are usually recorded. I had been hoping they were. I said that the forms submitted by myself and my doctor should be sufficient for her purposes. But she pressed the issue again. To me, it felt like a fishing expedition: Let's see if we can get the guy to say something that we can use against him. But my feeling is this: If your forms do not contain sections that provide all the information you need, then you need to make new forms. You don't need to ask me, on the phone, why I'm filing for LTD. You have forms for that. After telling her that the forms should be sufficient, I told her, politely, that if she had any further questions they should be submitted in writing so that I could have them reviewed by a lawyer. Then I said goodbye.

After that, I called the office administrator for my local neurologist to let them know what was going on. She said that she hates the big insurance companies, particularly mine, because "they always try to do this."

I immediately got another call, this from the teacher at my son's preschool, saying that I had forgotten to bring his lunchbox today. And it was true. He'd been rather uncooperative this morning, and amid all the contention, I spaced on his lunch!

Suddenly I was in a rush.

Immediately, then, I got a call from an administrator at the gym, slowly and peacefully explaining that they would indeed use my wife's new credit card for her account, not the old one. I wrote a note for MLW.

I had only minutes to go until noon. I drove over to the preschool with the lunch, creeping along behind an Acura cruising slowly past the high school, and dropped it off to him. He seemed happy to see me.

I'll prevail in the tussle with the insurance company.

And now for another dose of comparitive reality:

U.S. Army Sgt. Jessie Jackson screams in pain from shrapnel wounds while being evacuated in a helicopter with Spc. Dustin Hughes from a base north of Baghdad, Iraq Wednesday Oct. 27, 2004. Jackson said that he and fellow soldiers from the 91st Engineers were on an informant recruiting mission when insurgents fired a rocket propelled grenade, wounding him and Hughes.