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Thursday, April 17, 2014


For the past few months, I’ve been planning for what I want after I die.  Given my situation, it just feels like the prudent thing to do.  Consciousness can be a burden at times, and sometimes that burden is insupportable and shifts to others around you.  You must act while you still can so that your family knows your wishes and are not left wondering.  When death comes suddenly, unexpectedly, people are often confused and fighting with one another over what they thought you would have wanted.  So even if you are healthy and even though it’s scary, write everything down and let everyone know what you want after you die.  Even better, have a conversation with those you love.

I have been wrestling with whether or not I want to donate my body (or parts of it in the form of tissue) to NF research.  I found out is getting close to setting up a system for bio donation.  I’m already on the NF registry but they need blood samples too and right now they don’t have a local blood draw place so once that is done, then I finish my registry by giving blood.   And then when I die, they keep my body for 24 hours to take what they need, and return it to my family for burial or cremation.   I’ve been thinking about cremation and having my ashes strewn over a bakery, but that’s not reasonable so burial it is.  My brother and I had a long talk about it; I just need to get things in writing.

Every morning I wake up with one less leaf on my tree.  The pain eats away at me and the only way I can think to make it better would be either a medically induced coma (which I’m guessing, the doctors will not agree to) to leaving my body myself with some out of body experiments.   I’m not ready to make a final exit but that may change.  Who knows.  I’m just having a very, very rough time of it lately.

My dad’s not well and my brother and sister are left to deal with him and with me.  It isn’t fair.  Yes, they both have pretty good lives (with just the normal challenges) but that doesn’t make it okay.  I have done all I can do to get the help I need and I know they appreciate that, but I’m spent.  I can’t take another challenge.  Whenever a health issue arises for me, I just want to ignore it and let it run its course.  Somehow, I always come up fighting.  I just don’t think there are any more battles left for me to win.  I mean, we are all going to die.

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