Friday, May 19, 2017


Until a couple of days ago the photo to the left with my Facebook profile picture. Until I got a phone call from the GBS foundation telling me it disturbed some of the patient's who might see my profile picture. I immediately realized that I represent an organization that is larger than myself. So I changed it immediately.

But my friend at the foundation seemed confused as to why put it up. I thought she wanted an explanation. I didn't give her one. Mainly, because I thought any discussion about it would become more of an argument about my First Amendment rights. And that would only become ugly. And by ugly I mean me defending my right to be an ass hole.

So here it is...  I don't give a shit about useless words, symbolic events, or meaningless platitudes. In fact, I think they do more harm than good. I can't imagine that wearing a certain colored ribbon for certain month does any good except benefiting the people who manufacture ribbons.

My Facebook ad feed is cluttered with people trying to sell me T-shirts that celebrate rare disease month. They are the same people who are trying to sell me T-shirts because I was born in June or went to Sheepshead Bay High School. They're not helping people with rare diseases, Geminis or my high school alumni. They're just a T-shirt companies.

So here's the bottom line. If I am hanging from a cliff don't tell me to hang in there, reach down and give me a fucking hand. If I have a rare disease don't think wearing a ribbon is gonna cure anyone or prevent anyone from getting it. Donate money to medical centers that are doing research. Or better yet, donate money to the political campaigns of people who want to get elected and use our tax money to prevent rare diseases.

And BTW, tomorrow is the Brooklyn Half Marathon, I will be participating in it at all my friends and teammates will be helping me celebrate GBS awareness month by cheering "FUCK YOU GBS!"

1 comment:

  1. "It gets better" relates to bullying and how its impact is lessened as a teen reaches adulthood, if s/he does. Nothing to do with a physical condition which will probably impair one, to some extent, for life. Don't these folks think you're justified in being furious?


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