October 9, 2013

Remembering and getting angry

In the world of CF, we lose people way too often.  And almost always too soon.  I try not to dwell on the ones we've lost here on this blog, though I take the loss of each of my friends personally. 

Today I want to talk about a couple cystics who recently passed away, one old, one young.  Old?  You bet!

Harold Soloff was, to my knowledge, the oldest person with CF and he passed away September 23rd at the age of 82.  I'd call that a full lifetime, especially as he crammed in numerous accomplishments, such as serving in the military during the Korean War, fathering two kids, earning law degrees, teaching at university for 20+ years, and traveling all over the US and Europe.  Most normal people who die in their eighties will be lucky to have accomplished half of what Hal did.

Hal can explain a lot of his life himself, here in this article on page 5 from an issue of CFRI newsletter from 2011.

What I would like to highlight is a certain "never say die" attitude Hal had toward all things CF.  You can feel that in his article and I could certainly read it in the email interactions I had with him.  (Hal was an early member of the cystic-l mailing list, which recently migrated by force to Google Groups.  You can find it here.  As Phyllis had long since passed away and Hal was losing his luster for life, he chose not to follow the group to its new home, which is a pity.)  Hal's emails with people could be cantankerous.  He often got angry with people he perceived as not taking control of their own lives.  He survived so long by soaking up information and acting on it, that's clear.

But it bothers me that I didn't find out about his death until this week.  This, I think, is how much he had disconnected himself from the online community; but also a failure on my part to stay connected to him.

The other person's death I'm bothered by was a kid named Kyle O'Neil.  We were friends on FB until he defriended me over some silly thing or other.  It wasn't even important.  But because of that, I couldn't follow most of his updates.  I gather that he was in dire straights by August 12th and that he got a call for transplant, but I don't know what happened after that, or why he was dead by September 7th.  It just bugs me.  Where did we, the CF community, go wrong?  He was only 27 for chrissakes!  Why was he so sick so early?  Why can't we keep these kids alive longer? What can I do to keep this from happening again?

Hm.... useless rumination?  Or useful reflection?  I don't know.  CF is different for all of us and transplant is not necessarily a magic-wand solution.  It is HARD, sometimes lethally so.  It terrifies even as it offers hope.  It knocks you down badly, even if it goes stunningly well, and not everyone can climb back up that hill.  I just...

And when I look around me at the other CF patients at Duke pulmonary rehab, all of whom seem to be younger than me, I get worried. One of them, S, is just 15.  Fifteen!! This is insanity!  Why does he need a transplant so soon? Why is our medicine so primitive? I wonder if we're not moving the research along fast enough? Are we not being aggressive enough early enough with treatments? 

There's got to be a better way!

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