Please note that the comment section is "no reply" which means I can't reach you unless you leave a way for me to do that. My email address is at the top if you wish to contact me. Also, please, no soliciting. Thank you.

Saturday, February 8, 2014


I’ve been looking at end-of-life decisions lately.  My dad, who will be 90 next month, has been going over everything he wants with my brother and sister.  I’m not involved because I can’t be there physically. Which means I won’t be able to say goodbye to my dad at a gathering of any kind.  And, he wants to be buried next to our mother, of course, in MN.   We now live in WA state.  This stuff is so hard for me.  My dad and I have gotten real close over the last 20 years or so….maybe a lot longer.  We talk daily.  I know that it’s more important to have a good relationship than it is to just be at someone’s funeral, especially if you are carrying regrets.  And a little piece of me has already made peace with it.  Still.

Anyway….I’ve been planning everything for myself in my head for a long time and I finally wrote much of it down.  One of the hardest questions to answer, one that my brother asked me, was “what my wishes are” for after I die.  I’ve got everything in place for before I die in terms of living wills, power of attorney and DNR,  but what about after?

And what about after, anyway?  Being put in the ground never really appealed to me…probably an irrational fear of not really being dead.  And being cremated REALLY doesn’t appeal to me.  I’ve been thinking seriously about donating my body to NF research.  So I emailed them.  I’m already in the NF Registry, which is a great thing to do in the event that some kind of research or clinical trials start because then they have a data base filled with potential lab rats like me.  And if I qualify (who knows if it works in reality; in theory, its great) for one of those trials, they have all the information without me having to be aware of a trial….they would contact me.

So I emailed them about body donation and they wrote right back telling me that as it happens, they are in the middle of organizing a “BioStorage” system.  She wrote that they get occasional requests for this so that’s why they are working on it.  I can’t believe they haven’t before….I mean, what is research if you don’t have the bodies to look over forensically?   I just don’t want to end up on an autopsy table for first year medical students.   Not that they don’t need bodies as well, for obviously they do, but I lived the whole of my life battling this disorder and if they can find one tiny little clue that may help someone else with NF….I’d like to be able to help.

The way I figure it is that I’ll be done with my body and G-d will be caring for my soul.  Why not?  Of course, the same fear of “really” being dead applies!

No comments:

Post a Comment

Click on "Older Posts" to read more!