100% Tim…

3 09 2011
Often Awesome episode #11

gotoftenawesomeIf you didn’t think that this was a love story, well this episode makes it rather blatant.  They really say a ton, not only about how devoted they are, how much in love, but also how logistically complicated having this disease can be, how it can keep people poor or drive them into poverty.  How trying to figure out how the system as it is and the finances and “government assistance” can position people in a trapped space, where they can’t even enjoy the basic rights to follow love and get married!

I often feel that part of my passion is driven by the desire to see people affected by ALS (or really an debilitating disease) get treated as a whole, distinct person.  Not as a symptom of a disease, or that they are erased because they are looking at a road that is paved with dark limitations.  ALS is fatal.  There are no cures.  Few drugs (that do very little).  We understand even now, with recent breakthroughs finding there way into the news, very little about how it forms or how to prevent it.  On the sidelines is too easy to ‘empathize’ and forget, to feel we are helping, and even with the best intentions, overlook the person being trapped inside the shell.  I want to make sure that anyone who suffers with ALS gets to keep their dignity, their rights to decide the quality of their lives, to love as they wish, and express as they need to – without those of us on the outside, determining for them what is right, or safe, or appropriate.

That the government has a system of paying a lower-middle class person $750/month to survive (less than $12,000 a year) against a disease that can cost over $200,000…and yet deny that person the basic rights to love and marry the person who is going to make that life worth living..is in a sense a kind of death sentence.

Its just another way of illustrating why ALS is often called an “orphan disease”.

We must be ever mindful to not allow this disease to be greater than the life that lives with it.  That it never gets more of a voice that the fighter.  That our loved ones never get turned into ‘second-class’ citizens because as a society we abandon them and barely look for a cure.

Try an experiment: go to work and say “My friend has ALS and I’m trying to do some fundraising to help them.  Will  you help?”  I suspect 6 out of 10 won’t know what it is, 3 out of 12 might recognize something if you mention ‘Lou Gehrig’s disease’, and 1 in 10 might have someone they know who has had it.

If I’m wrong, it’s a win/win…they might help you fundraise for the Iron Horse Challenge and may even come walk with us in Dayton, Columbus, or Cincinnati.  Either way, you will know more about those around you and you will spread awareness.

I’m getting up early to bike 70 miles to Yellow Springs on a day that should be uncomfortably hot; but I have to make sure the route is ready.

Sunday the Marc Levinson 5K walk/run is in Bexley….and I will be running in that.  Enjoy your holiday and know, while you enjoy your freedom, someone is losing their fight with ALS.  I pray it never touches you.  I pray harder we find a cure so you never have to worry about that.

I will fight to make sure those voices stay alive.

timTim and Kaylan…your love is a gift to us all.

This Iron Horse Challenge is for you!

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