"A New York Treasure" --Village Voice

It Ain’t Easy

There is a cute little girl in our building who kitty sits for us when we are out of town. She’s thirteen now, so she’s not such a little girl anymore. But she’s a sweet kid, thoughtful and bright. Her parents are cool too–the old man is a professor. They are in their mid-fifties I’d guess, hip, and know a ton about music. Last year, the mother had a stroke, or at least they initially thought it was a stroke. Turns out she has A.L.S.

At first, her speech was slurred. Now, she can’t talk anymore. Instead, she types into a small laptop computer that speaks for her. But she is deteriorating and there is no telling how long she has to live–two years maybe?

My wife Emily has crohn’s and has become something of an expert at dealing with insurance companies. She has gone downstairs to our neighbhors apartment and spent hours sorting through their insurance complications. It makes her feel good to help, to be of some use, to put her own long, often exasperating experiences to work.

I’ve gone down a few times too but it’s almost too painful to bear. I saw the parents on the subway a few weeks ago and buried my head in my book. They didn’t notice me and they got off a few stops later, far from our usual stop. I felt ashamed, like a coward.

The thought of the husband losing his wife, of the girl losing her mother, is overwhelming. When I see them, I am bright and cheery, but look for a way to make the encounters as brief as possible.

A.L.S. is cruel fate for anyone. Which is why I felt a measure of comfort reading George Vecsey’s column in the Times today.

Baseball is doing a good thing.

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1 boslaw   ~  Feb 3, 2009 2:55 pm

ALS is the scariest, cruelest sickness a person could have. Absolutely horrifying.

2 PJ   ~  Feb 3, 2009 3:00 pm

Perhaps instead of focusing on grief so far in advance, how about transferring the focus to "What can I do to help make the rest of her time here with us, and my time with her, more fun?" I'm reminded of the recent season's final episode of Kathy Griffin's "Life on the D-List", when she went to the Walter Reed Army Medical Center [Season 4, Episode 10: Red, White and Don't Be Blue (Finale)]. While overwhelming to say the least, I learned that you couldn’t underestimate the value of fun and laughter, even in the darkest recesses of places where life can take us. I would argue it might be the single best thing we have to help people keep going. We owe that to each other at least in terms of maintaining the sense of community we hope to actually have and enjoy today.

I think we'd all be better off. Our fear of death in this culture dooms us to inactivity, to a fault sometimes. Hell, buy her a box of her favorite type of cannoli in Scooter's name once a week and enjoy one of them with her! If that doesn't brighten both of your days, for the rest of her days, nothing will.

Oh, and there is nothing the matter with grief, even if the person you're grieving for is alive and sitting right in front of you. Feeling that way certainly does not make you a coward. Do however; try to save grieving for the dead.


3 edoubletrouble   ~  Feb 3, 2009 3:57 pm

Yo PJ thanks for the attitude adjustment
Al Belt - thanks for putting it on the table

keep livin' it y'all

4 Alex Belth   ~  Feb 3, 2009 4:03 pm

Thanks PJ. I actually burned them some cds--Carlin, Lenny Bruce, and gave them some laughs...

5 willet   ~  Feb 3, 2009 4:19 pm

I lost my favorite high school teacher to ALS. He was diagnosed my senior year (he was 24) and they said he wouldn't make it to graduation, but he gave our commencement speech, and fought hard for 3 more years. His braveness in the face of adversity has been an inspiration to me.

I hope this family gets some of the "bonus time" that I got, and that they can take some good away from a terrible situation.

6 Chyll Will   ~  Feb 3, 2009 8:22 pm

[2] Great call, PJ! >;)

7 Mr. OK Jazz TOKYO   ~  Feb 3, 2009 8:30 pm

Inappropriate perhaps in this serious thread, so I apologize in advance...

Bob Costas jumped to the MLB Network..

Jeter said to the NY Post "I support A-Rod" (a bit late there, eh Captain??)

Manny Ramirez signed a one-year $40 million deal to play with the Rakuten Golden Eagles in Japan..in cozy Kleenex Stadium he promises to hit 75 home runs..

8 Rich   ~  Feb 3, 2009 9:49 pm

My grandmother died of A.L.S. at 63 when I was a very little boy. As a result, my only memories of her are of someone in an extremely debilitated condition. My heart goes out to this woman and her family.

9 scottlong   ~  Feb 3, 2009 11:20 pm

Thought provoking. Ironic that I read this now, as I was just booked for a fundraiser in Chicago, earlier tonight, which will benefit ALS.

Each year I play a great comedy club in Rochester, MN. The hotel I stay at is across the street from the Mayo Clinic. It's an old hotel which features pics of famous celebrities who have stayed there when getting medical treatment. I can only think of one person while I'm there, though. Lou Gehrig. Growing up I read every Iron Horse bio I could and remember not only watching Pride of the Yankees, but even A Love Affair: The Eleanor and Lou Gehrig Story. While I like to think of Gehrig being Gary Cooper, instead of Edward Herrmann, I can remember crying like baby watching both movies.

I can completely relate to the battle of health insurance claims. My daughter has autism and despite spending over a grand a month on my family health care plan, my wife and I are constantly battling to get certain therapies approved. It's exhausting. You can read the fine print which says something is covered and then you will still get the bill. I know it is part of their business plan to try to break you down, until you just give up. Hang in there.

I wish I could keep the attitude of PJ, but I'm at heart a pessimist. I guess I'm still a work in progress.

Just another former Toaster alum.

10 joejoejoe   ~  Feb 3, 2009 11:21 pm

Probably my favorite hockey player of all time has Crohn's, Kevin Dineen. All the Hartford Whaler fans in the house say hey! KD is one of only 5 NHL players in history to have 350 goals and 2000 penalty minutes so he somehow mananged to cope with Crohn's enough to be one of the scrappiest SOBs in hockey history.

And you shouldn't feel ashamed about not wanting to deal with your neighbors for just one moment one afternoon. Next time you see her tell her about your day, a nice meal you had with your wife or something you saw out and about. You are a good dude Alex and nobody bats a thousand with this stuff. I've had bad days (though nothing like A.L.S.) and found comfort with a lively post on Bronx Banter. I'm sure you are the same in person.

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"This ain't football. We do this every day."
--Earl Weaver