Reality Check

I received an email earlier this week that another member of the hemophilia community recently died. His death was the result of infected factor (that's the medicine we bleeders take to stop our bleeding). I don't know if it was HIV or Hepatitis that killed him, but the factor he (and more than 10,000 others with bleeding disorders) received was contaminated with HIV and Hepatitis A-G. No pharmaceutical company, fractionation business or the FDA has admitted responsibility. The government did pay out $100,000 per each individual infected with bad blood. But no one has admitted fault. And there is clearly much fault to pass around.

Those of us who are active in the hemophilia community hear of these deaths throughout the years. But it's still a blow.

I knew this man. I never met him personally but I carried on conversations with him via email and snail mail correspondence. He was a very cynical and skeptical person. Which, given the fact that the medicine that was supposed to keep him safe ended up killing him, was understandable.

He was not sympathetic or necessarily kind to those of us raising young children with bleeding disorders. He often came off as cruel and bitter. But his message was important.

You can't sugar coat a turd and call it a cookie.

He didn't like it when us young parents tried to make our kid's lives sound all rainbows and butterflies. He reminded us that although we want to make our kids' lives better, it's still our kids' lives.

I still have to remind my children that they have hemophilia. As much as I want their lives to be "normal" and carefree...it just ain't so.

My friend Razor lived a happy life. He had a wife and step daughters, loved music, was an avid computer nerd and voracious reader. He championed the little guy. But he was also a pragmatist. Razor's death reminds me that, actually, what makes you strong sometimes does kill you.

So long, Razor Edalb, thanks for all the fish.