Feb 25, 2015 at 01:30 PM

ALS - Nobody Wants This Exclusive Club

By Jos Cofio

Dean of the Club: Stephen Hawking

I belong to a club to which nobody wants to belong. I am not sure when I applied. I don’t recall doing so. Nobody really knows what the criteria for membership are. It is a lifetime membership, though most members don’t stay in it very long: On average, three to five years. The senior members have been known to stay in ten and twenty years, and the dean of us all, Dr. Stephen Hawking, gained entrance over half a century ago.

The dues are incredibly high. “A pound of flesh” doesn’t begin to describe them. In fact, a steep amount is required not only of the members, but of everyone around them.

The good news is that it is an exclusive club in the numbers it admits: at any point in time, only 30,000 members belong in the United States. Though it does not discriminate on the basis of age, gender, race, or any other factor. It is very democratic in that fashion.

PALS & CALS: Wonderful People

There is one major benefit to belonging. People associated with the club as members, or supporters of members, tend to be incredibly caring, loving people. Frankly, it is the only factor that makes belonging even remotely tolerable. I am so grateful for this benefit!

Now, here is the thing: Every member, every last one of us, want to shutter this club. Shut it down. Close the doors forever, throw away the key and burn down the building. We will gladly turn in the memorabilia T-shirts, banners, wheelchairs and ventilators.

We can’t wait to hear the final gavel fall to mark the closure with a sign prominently proclaiming, “no body need apply – we are closed”.

Support the End of the "ALS Club"

We want your help, we need your help. Please donate to the club closure fund through WWW.BEYONDALS.ORG, or at WWW.ALS.NET.

There are other clubs I would much rather join.

Posted in Living With ALS.