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September 10, 2010

It seems that lots of people I know have a horrible disease that is in their family — or worse, in their body — that they must contend with. Various forms of cancer, MS, PKD, Lyme,  Alzheimer’s, the list goes on.

As you likely know, ours is my dear sister being clobbered by ALS. I feel like a heel, because:

Last year my family and I created a walk team to raise funds and awareness for ALS research and services in honor of her. She has been battling this wholly craptastic disease for more than 3 years, and sometimes it can feel like it is taking all of the light out of everything. The walk was the best thing our family had done together in a long time, and we raised a large amount of money, and they gave us an award, and everyone felt great about it. It was actually amazing because it gave us a really positive focus during a really hard time.

Somehow, I didn’t manage to understand that this year, the walk would coincide with a very special trip that we have been planning with the other part of my family. We had planned this trip before they had set the walk date.

Back to the heelness.

I am upset that I won’t be participating in this year’s walk in person. I’m helping to coordinate the event and raise money and awareness. but it feels wrong not to be there.

It also feels weird to announce that I am asking for money since I’m not even going to be able to go and walk 3 miles. Just there I was going to make a joke about how I can walk 3 miles, pinky swear, but that is just weird, since so many people with ALS can’t walk three miles. Or any miles, or at all. Nor can they eat, or talk. See? It is bad. Bad like some horrible parasitic guinea worms I learned about for work, just in a very different sort of way. All this to say: Regardless of the fact that I won’t be at the walk on 9/25, I am going to use this as a platform to shill for ALS.

This page links to posts describing some of our experiences. And this is a page where you can contribute to the walk if you would like to do so. Many friends already have, this year or last year, and that is an amazing and nice nice thing. Thanks to all of you, whether the way that you are nice to me is financial or not. Even just listening a bit and learning about ALS will help in the long run. I appreciate it!

And now, back to our regularly scheduled programming.


One Comment leave one →
  1. Judy permalink
    September 12, 2010 5:46 pm

    I am sure you have already investigated the following but just in case not:

    Lyme tests are notorious for being inaccurate. There are both false positives and false negatives.

    If there is even a 1% chance that your sister has Lyme and not ALS it might be something
    worse pursuing.

    (I was personally diagnosed at one point with MS that turned out to be Lyme Disease-and I live in Brooklyn. This is what compels me to place this post.)

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