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Monday, May 21, 2012


I spoke to my dear friend Ted, today, who has a very advanced case of NF – related problems.  The list is too long to go into, but he is in the end stages of life right now.  His pain receptors are filled to capacity so no pain medication works anymore and he only takes small doses just so he won’t go into withdrawal. 

About four years ago, I was at an NF get together and the president of our chapter asked if I would be willing to talk to this guy named Ted, who lives about two hours from me.  We emailed for a while, then we spoke and have been speaking a few times a week ever since.  For a while, we spoke daily.  But as his health continued to deteriorate, it became difficult for both of us.  Of course, mine isn’t exactly standing still, and we have a lot in common.  The greatest difference being that I am still ambulatory.   Sitting and walking are hard, and my digestive system is as bad as his, but he is suffering greatly and speaks of nothing but dying.  He has been wanting that for several years now, and told me he would not see the end of 2012.  I believe him.

The selfish parts of me want him to hang on because even with our mutual challenges, we make each other laugh.  He is the one who uses words like “ghastly” and “demonic” to describe NF, but says it in an exaggerated way that makes me laugh.  Very funny guy.   We met only once, years ago when his sister was visiting from California and drove him to me.  It was hard then, three years ago.  And now he’s as thin as I am and can’t walk at all.   He has never missed a birthday of mine, has sent me the most beautiful cards over the holidays or just because; he’s an amazing person, a dear friend and will be missed greatly.  I am not nearly as generous when it comes to sending cards.  I do for birthdays, but that’s about it.

Ted is not only unafraid of dying; he has been courting it for almost as long as I’ve known him.  I do occasionally; most of us who are faced with what we are faced with every day (sick and not dying) think about it at some point.  It’s not bad or wrong, it just is.  And each of us has to decide for ourselves what, if anything, we want to do about it.  Do we act on it?  I am not sure I would be able to do it because I think I need to see life all the way through.  And the old Catch 22 comes up.  If there is nothing after this, what was the point of lying around in pain for what feels like, an eternity?  Who would I yell at?  For me, 15 years and counting.  It didn’t get really bad until 10 years ago, but it’s always been hanging around the corridors of my body, threatening, teasing, torturing.  On the other hand, if this little visit on Earth is just an entry into something else, well, sticking it out would be good advice.

Whatever the case, we each have to make those decisions ourselves.  And no one else should be able to make that choice for me, especially the government.

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