So, I’ve been thinking of the F word lately. Not that F word, but the other one.. the one in the acronym of CFS/CFIDS. That dreaded word fatigue.
In the thick of a long standing crash, it strikes me even more deeply just how grossly inadequate a term it is for what we experience. In Hillary Johnson's Osler's Web, Dr. Mark Loveless was quoted as saying that, at their worst, "the CFIDS patient feels every day significantly the same way an AIDS patient feels two months before death.” If I were to try to capture such a feeling in a word, I’m not sure what I would use, but it wouldn’t be fatigue.
The eloquent Ms. Laura Hillenbrand (author of the best-seller Seabiscuit and long time sufferer of CFS) put it this way: “This illness is to fatigue what a nuclear bomb is to a match. It’s an absurd mischaracterization." Indeed.
As I was contemplating this frustrating word one morning, I wanted to attempt to give it a bit more weight and power somehow. In the process, I ended up with the idea for the following... well, poem of sorts. Please bear with me here. I have not written more than a couple poems since I was a child. This is an amateur attempt at best, but I wanted to share it anyway because this word is so often misused in relation to our disease.
F is for fierce, ferocious, feverish fatigue, it's
Flamed fingers folding over you, filling you with its
Feral, filthy fumes until you fall face forward,
Fallowed from its forbidding force. Your
Former self, physically now so fragile and frail,
Falters and fumbles, yet…
Fervently forges
Forward
Fighting for a
Fleeting flicker of freedom.
F is for the felicity of fabulous fantasies that
Float effortlessly in the fluidity of dreams,
Fearlessly and faithfully flourishing in flight,
Foretelling a
Future
Fully
Fortified
Functional
Fruitful
Full-bodied
and
Finally
Fervently
Free…
--LB © 2009
See how the poem is in... the shape.. of an F? And I used mostly all F words? Hello? Anyone? ;) Okay, a bit forced, but I tried. :)
Thanks to all those who left such wonderful comments of support and encouragement to me with my last post. It was so appreciated. Regretfully, my crash continues and has not yet fully abated. It's been a very rough few months, to say the least. I'm a bit concerned this may be my new CFS "normal," but I'm trying to remain as patient as possible, and as always, I continue to hope.
it's very beautiful and I don't think you have a clue how wonderful and natural and REAL it is...
ReplyDeleteWe all hope with and for you Laurel.
ReplyDeleteI liked your F words very thought provoking.
I hope you turn the corner again very soon.
I actually thought the poem was excellent. Very well done. Amateurish...definitely not!
ReplyDeleteI am praying that you start to regain your energy and come out of this crash soon.
The poem is eloquent!
ReplyDeleteI truly hope this isn't your new "normal" and that you start to recover soon. In the meantime hang in there and know that you're not alone in this daily fight.
Dear Laurel,
ReplyDeleteWhat a beautiful poem! I don't think you should assume this is your new normal. I've read so many CFS blogs where people think that a crash is permanent but it turns out not to be. Hopefully, Springtime will ease some of your symptoms.
I think this poem is awesome. Last night when I couldn't sleep I was on the same train of thought and made a ridiculous list of "new names" for CFS. I was thinking of that same quote as a starting point. I hope you come up from your crash soon.
ReplyDeleteFar out! Fodder for your fans.
ReplyDeleteI noticed a lack of one F-phrase: failure to replicate. Have you seen the WPI's statement about the latest study? www.wpinstitute.org/news/news_current.html (third item down).
It's beautiful.
ReplyDeleteIt's F-antastic, Laurel. Such creativity, and you express yourself so eloquently. It can be so hard to describe what this is like, and you have done so here. I hope you start to feel better soon. And that you keep writing when you can!
ReplyDeleteI like the poem. The repetition of F words and the shape are really clever and the meaning is all too real!
ReplyDeleteHope you start reversing this awful course. Let us know what you are doing to try to change things.
Great poem, Laurel! Hopefully you'll find a treatment soon to make your new normal vastly better.
ReplyDeleteYour poem is beautiful, first of all. It's definitely had me thinking about the word "fatigue" and how huge the gap between that word and the crushing weight of exhaustion that CFS creates.
ReplyDeleteI just published a request on my blog, How are you? and other dumb questions, but I'd like to ask you specially. You are one of the first blogs I found after realizing I had CFS, and your youtube video and personal story moved me to tears. I would really like to chat with you sometime about how chronic illness has changed your life, how you experience stigma, and how blogging has affected your life and your relationship with your illness.
Please email me at robyn.showers@gmail.com. We can do the interview through whatever medium is most convenient to you-- be it telephone, Skype, email, gchat, etc.
Thank you so much, and know that you are in my prayers.
~Robyn
This poem was beautiful in every way and I feel it within my own body.
ReplyDeleteI hope you come out of this crash soon. You should come visit my CFIDS blog It's Time To Get Over How Fragile You Are.
I'd love to get to know you better :)
So good to be reading a post from you again..and I like your creative F and fatigue poetry. It is great! You are in my thoughts and prayers as your relapse continues in such severity. Gentle hugs.....
ReplyDeleteI think it was absolutely beautiful and it's SO good to see you back online. Sending out very hopeful thoughts and {{{hugs}}}
ReplyDeleteLoved all the great comments -- thanks, everyone!!!
ReplyDeleteLovely poem! And so true!!!
ReplyDelete