Today, I am writing for, and to, everyone out there with NF or some other ghastly (a friend of mine with NF uses this word often…he’s worse off than me and he makes me laugh when he says it because of the emphasis he puts on the word) disorder that leaves you in mind-numbing, chronic, intractable pain. I know a lot of people live with the slings and arrows of various ailments, some not as bad, some far worse, than NF.
But until you know what it’s like not to be able to do the simplest things (like sitting) without wanting to cry in pain, with or without medication, if this is your life, non-stop, 24/7, if you can feel it escalating as one by one, you lose body functions, it’s difficult to understand, just as I can’t understand someone else’s challenges. Pain is a living, breathing disease in and of itself. NF is the disorder. Pain is the disease. And make no mistake, chronic pain is a disease. But suffering? Suffering is a choice. I’ve written much about it in long and short posts. I think I write about it in “The Choice” and a few other things. My brain is fried today.
I just want to give a shout out to those people and let you know that I bow to the courage within you to keep going. One more day. One more hour. One more minute. And tomorrow, you get up and do it all over again, no? Because I’ve thought about the alternative often. I still do. I fantasize about it, I tell myself there is no G-d, there is no World to Come, so what’s the point? I’ve been here 58 years and at least half of those have been in some kind of pain from some disease. I have had way too many to list.
But, then I remember all my other experiences that I cannot explain. I’ve written about those as well. My Helpmates, First Encounter, Ida’s First Hello. Some of them have wowed me so completely, I just can’t believe there is nothing else. And I don’t want to cheat. If you have never seen that Robin Williams movie What Dreams May Come you might want to see it. It’s not that great, but there is this wonderful line in it….I don’t want to give too much away, but one of the characters can’t figure out why another character is in “the other place” (not heaven…but they don’t say the word hell, they say “the other place”) and this guide explains that that’s where suicides go. But she was in so much pain, why is she punished further, the guy asks. The guide explains (and for all the books out there, I thought this was beautiful and made so much sense to me) that it isn’t a punishment….it’s that their minds were so dark that after death they still can’t always let go….so they end up in a dark place.
Now, I disagree, but I thought it was clever. I’m assuming that if you are that ill, mentally, physically, whatever, you will not be further punished. Still, waiting 24 hours if you are having those thoughts would be highly advised…not to mention getting on antidepressants and getting help, too. I know it seems despairing sometimes, but you need to try and think of it as your own life, something no one can take from you and you have to love your body no matter how it betrays you. I try to meditate every day to Stephen Levine tapes. Read his books, listen to his tapes.
And hang in there, everyone out there who struggles with issues difficult for most people to understand.
Blessings.
I know not everyone likes this song, but please understand I'm not trying to offend anyone, but rather, acknowlege my own questions.
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