Wednesday, September 19, 2007

The one in which I have absolutely nothing witty to say

My second cousin Aimee was on Nightline last night in a feature about her life with ALS (Lou Gehrig's disease), and how she's preparing her kids for her death. I never spent that much time with Aimee; she is twelve years older than I, and she was off doing important things like a studying abroad in Paris and living with her husband, Jim, in a suburb of Chicago. She had this gorgeous wavy red hair, and a ready smile, and my most striking childhood memory of her is when she offered to help me with one of those puzzles where the two circles link together and you have to figure out how to slide one out from the other, and as I sat on the floor and looked up at her joking with her siblings as she played with the puzzle, I thought I would probably never again be in the presence of someone so unassailably exotic and fabuous.

Aimee and I, of course, grew older and as I transitioned into Nerdy Teenager with Unfortunate Hair and Glasses, she turned into A Bona Fide Cool Mom. She and her husband and her kids would drop in on my grandmother every few years, and we'd engage in the ritual of the extended family; the Chamerniks would crowd together on my grandma's divan, and we'd assume our customary places in the armchairs and against the walls and we'd pass around pictures and admire Nick and Emily as they played on the floor and eat some sort of fried poultry and cream pie and then we'd all agree to see one another again in a year, or two years, or whenever.

The last time I saw Aimee, though, was about four years ago when she was pregnant with her third child, Alex. No one said anything, but we all knew something was wrong. Her speech wasn't clear, and her magnificent smile seemed somehow dulled and off balance. The family gossip mill started churning, and eventually the word was out that Aimee had been diagnosed with ALS. We shook our heads and were saddened in the way that semi-casual observers tend to be, and then I lost track of her and Jim and the kids for four years.

But Aimee's been busy since then! It's been nearly 66 years since Lou Gehrig died, and ALS unfortunately hasn't reached cause celebre status like AIDS or cancer, because it doesn't currently have a Magic Johnson or a Katie Couric to put a powerful and resonant face on the disease. As with other auto-immune diseases of its kind, scientists are perpetually close but no cigar in finding treatment or a cure for it, and no one seems very motivated to give it enough attention or money to advance the progress. So Aimee decided she would be the face of ALS, and she's been writing to newspapers and magazines and appearing on television to appeal for support. I found her blog semi-accidentally a few months ago, and I visit it regularly now. Her writing is simultaneously so hilarious and so exquisitely painful to read that I inevitably end up in tears one way or the other by the time I'm done. I also found out that she's a rabid Cards fan, so of course that reinforced my estimation of her uber-coolness (even if she did marry Jim, who has equal passion for the Cubs).

Anyway, I know I haven't written very much about weight loss in the last few weeks, and I apologize if you're coming here and getting disappointed at not getting to read about how big my ass is, or whether garlic or cheddar croutons have more calories. I promise we'll be back to regularly scheduled programming next week. I just wanted to share the Nightline clip and Aimee's page with you, to show you how beautiful and articulate and strong she is, and how much ALS sucks for not letting her stay in this world for very much longer.

Nightline video clip from ABC

Aimee's website

The ALS Association


Christine said...

Thank you SO much for posting the clip of her on the show. I work in long term care and I take care of several folks with later stages of ALS. What a terrible illness. She is a very strong woman - and what beautiful kids!

Doctor Andy said...
This comment has been removed by the author.
Doctor Andy said...

The highest-profile ALS-patient I know is Stephen Hawking, but stories about him don't emphasize that fact much anymore. Everybody just knows him as "that scientist who talks through a computer". He's certainly not (to my knowledge) out there running publicity in the manner of Michael J. Fox concerning Parkinson's Disease.

Grumpy Chair said...

The first time I heard of ALS, was when an actor on Guiding Light was fired because he had it. I recall, the producer of the show said something stupid like "The character of Roger is a strong personality and can't have a speech impediment."

The actor (I cannot recall his name right this moment) was hired by One Life to Live where he stayed until he became too ill.

Be strong. Aimee is a beautiful wife, mother, daughter, and cousin.

Bean said...

I cannot imagine having to do what she does, and she does it with such courage. Amazing. Thank you for sharing.

Amanda said...

Wow Erin, thank you for sharing this information about your cousin Aimee. I can't imagine what Aimee is going through... I was in tears reading her blog. Life is really too cruel sometimes :(

MB said...

ALS is such a cruel and devasting disease. My prayers go out to Aimee and her family.

I have a close friend who was diagnosed with ALS in 2003 and as much as she fought to stay active the disease has taken its toll and robbed her of the life she expected to have.

She always wanted to have kids, she was such an active vibrant personality and is now in a wheelchair unable to even hold her head up without the assistance of a brace. She is still fighting and an inspiration and reminder to others to be thankful for what they have.

When I have days that I don't want to work out or have a bad day at the office I think of her and know she would do anything to be able to go to the gym or work. It makes me appreciate the fact that I have a body that does what I want it to do even if it is struggling to lose weight.

I hope someday there will be a cure. God Bless.

MB said...

I really need to spellcheck my comments. I obviously meant "devastating."

Erin said...

I think you made the right choice in blogging about Aimee. I am pretty close in age with her and also have young kids. I can't imagine her inner struggle with what will become, and especially what will become of her children. My thoughts are with your family.

*ccc* said...

Aimee sounds like an amazing individual and you are so fortunate to have someone with her strength and grace in your family.

I will keep you all in my thoughts!