Thursday, May 15, 2008

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 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.


My Flock Rocks! said...

I am so sorry about your friend...I am terrible at words and wish I could just give you a hug! I owe you one!

postsimian said...

Ouch, sorry to hear about it.

Seen the Dennis Quaid lawsuit yet?

Michael said...

You have my deepest condolences. My wife is a care giver in the field of hemodialysis and the recent tainted heparin was a blow to that entire community. All of the nurses and techs were worried sick that they may have administered bad heparin to patients but, at least locally, it appears none of the patients were harmed. These medical malpractices cause great grief and so many could be avoided with just a little more concern for people and little less drive for the bottom line. Again, I am sorry for the loss of your friend and the worry it causes for you, your loved ones and your community.

Jennifer said...

I'm so sorry for your loss. And for the harsh reality that you have to deal with, especially in regards to your kids.
I think it's great that you are blogging about this. I really think it opens the eyes of your readers to a reality that many of us are totally unaware of.

Spookloops said...

Hi -
I just happened to find this blog while googling some other things. I'm Razor's stepdaughter. Thank you so much for your kind words.As you demonstrated, Razor had a huge impact on the people that knew him, and I am touched to still find memories of him online, even after all this time since his passing. Thank you.