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Sunday, December 14, 2014

Who By Fire

I've been bad about writing for a long time.   I want to post positive, upbeat things to encourage those with the challenge of chronic, intractable pain that cannot be controlled.   I've got a surgery scheduled for the end of January and I'm terrified it won't make any difference.   NF is ruthless, unforgiving and beyond challenging.   I struggle constantly to make sense of it; whether or not there is a G-d or if everything is just random good or bad luck.   Anyway, I've been working on this stream of consciousness poem (it was stream of consciousness but I tweaked it) below:

The day will come when lights are low and all I’m breathing in will go
Then to this world I’ll bid goodbye and hope you know I did, I tried
I fought like mad against the pain that seared right through, all grip all gain
I’ve often left it through my mind in search of comfort hard to find
Precious pain-free moments heaven, pain dips down from 10 to 7
Music, oils and meditation, seeking comfort, speculation
Surgery is my last hope to find relief whatever scope
If that bid fails no option’s left, I do not meet the standards set
for helping those in mortal pain but no “by when” date, what a shame
A life of pain with no conclusions, no longer clutching doped delusions
of hope that pain will end in time, to have a life out of this bind
I know they have to draw the line on who to help but what a crime
Left alone to make a choice, take the action, use my voice
But “what if’s” haunt as much as pain, the list is long as is the strain
of questioning why I’m here, is there a G-d and is He near?
Or was my birth and shattered gene, just a crapshoot, not foreseen?
If that’s the case why wait around just pack my bags and leave this town
But if there is some truth to learn, then patiently I’ll wait my turn?
and live in torturous, intractable pain, it’s hard to believe this was ordained
One thing is true, for this I pray, to not return to Earth one day
And when it’s time and lights are low, all my breathing in will go


  1. Thanks for writing this. I have NF and Fibromyalgia, and can relate a lot to what you are saying. I've wondered how to hold on to living when it feels like every day is such a struggle, dealing with the constant pain, and myriad of symptoms. You are not alone, even if you may feel that way. Thanks for making me feel less alone in all of this.

    1. Thanks, Amir, for your lovely comment. I appreciate it. I sometimes think no one reads these but then I get a nice comment like this one or an email. I am so sorry you are dealing with this as well. It's a tough road....I just keep telling myself there is a reason for all this...and that lots of people have it worse. You are NOT alone. Not by a longshot. Email me any time....the address is at the top of my blog.


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