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Tuesday, January 6, 2015

NF Coping Strategy Group

I mentioned a while back that I was going to be starting a coping strategy group that NF was sponsoring.   It started Sunday, January 4th.   So far, I am happy I agreed to it.  By the way, if you ever want to be a part of anything related to NF, whether they are Clinical Trials or workshops like this one, make sure you are on the NF Registry so that they can contact you.  Just go to ctf.org (Children’s Tumor Foundation) and look for the Registry  It’s easy to do and if something comes up that you are qualified for, they will contact you.

I was surprised at all the stuff it brought up for me.  I thought I had a lot of coping skills; I meditate, do acupuncture, write, read….but all of them are wearing thin and I didn’t realize how thin until I heard other people in the group talk about their challenges.  I still have each and every one of them.  And my depression, anxiety, sleeplessness and boredom have reached a tipping point.  Death is on my mind much of the time.  But alas, I have convinced myself I must finish what I started or be destined to repeat it.  And I have no desire to return.

That said (or writ) it was interesting to hear an echo of my own pain, physical and psychic, in the voices of others.  I was impressed at the mobility of one in particular, and felt the pangs of jealousy and shame.  Jealous of her being able to move about in the world and ashamed that I haven’t “made an effort” to do so (not true).  She, on the other hand, felt shame and embarrassment at the tumors themselves.  Most of mine are on the inside and I heard once that people with internal tumors like me have pain issues, while those with the “bubble” tumors on the outside deal more with the stares and the questions.  Either is no walk in the park.  NF isn’t for weenies.  I have to remind myself of the piece I wrote years ago “Bumps of Beauty” posted on this blog.

I watched this TED episode about these kinds of feelings.  One presenter was saying that when parents or people from the outside try to help him (forgot his ailment) he felt he wasn’t good enough the way he was.  I never gave that much thought but I burst out crying so I guess its been an issue.   My parents wanted me to be like everyone else and I just wasn’t.  I did poorly in school regardless of my father’s rage around my inability to do well in math and science.  I did excel in writing and English.  And history.  But I barely made it through.  I was sick A LOT when I was a kid.  Hopefully, attitudes around people who are different have changed, but not by much I fear.  Bullying is more prevalent today, I think.   And of course people who love you don’t want you hurting.  But I think to some degree, having a “normal” child is less work, less stress and fewer tears than one who is challenged physically, mentally or emotionally.  That’s just life.  And “normal” children don’t necessary turn into shooting stars, either.  It’s all a crap shoot.  All of it.'

Just in the mood for this song!







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