Monday, May 23, 2011

Thoughts on Elizabeth Damewood Gaucher's BEING the Ghost in Your Own Machine.

I urge you to read this post, Where is God in Chronic Illness, by Elizabeth at Esse Diem. She's an amazing writer and was diagnosed at age 30 with MS. Her nerves are the bane of her mental clarity in the way that my bones are beginning to be. (But sweet heavens in no way am I comparing my back issues to MS.)

The thing she struck me with was this anger at the disease for distorting her "personal brand." My doctors have seen me break down hard recently- crying because I built, very deliberately, a brand of  "Weird in Appearance yet Not Disabled Woman." This persona has got some cracks now.

That funky swirly claw arm does its thing folding clothes, opening jars, and propping babies on hips. But inside, bones I shouldn't even have are launching an internal sneak attack. A doctor at the urgent care clinic I saw this week was shocked I hadn't been referred to a specialist. She gave me the name of a local neurosurgeon who specializes in spines. His secretary let me know he doesn't, however, treat scoliosis. She was a sweetpea, though, and gave me the number to a guy at Marshall U, about 45 minutes away in Huntington, WV. He's an orthopedist. I'm waiting for an appointment and continuing the PT stretches, the chiro, and the amazing Kim, for whom I started this drawing:

I'm struggling to get a handle on this. Seeing it as a fight against the pain feels wrong. That works for depression for me, where the depression's a bloated vampire and I'm all Buffy. But this is a new thing. I've got to get back to building that sense of self and accepting the bones and body that are mine. I'm remembering gratitude a lot, and trying to look at my footsteps each as a gift, rather than fretting over what changes my body has coming. It's a manageable thing, and I'm listening to muscle, nerve, and intuition. I have to trust the body-self and flow with it. I'm surrounded by allies who pop the bones and knead the muscles and (at the moment) alter the chemistry. Thanks to Elizabeth and others who share their journeys. It would be dreadful to feel alone with obstacles like this in our path, but we aren't alone, and that' there is a whopping dose of healing goodness.


  1. You are very kind to share my blog post with your readers and to express such positive thoughts about my writing. Thank you!

    That anger piece is long behind me, as you will see when you you read the whole essay (Tweet me/DM me your mailing address, I'd love to send you a copy of the book!) A chronic condition is one I think responds best to the image of a willow in a storm -- we bend to accommodate challenges, it is not battle against an acute foe to be defeated.

    I think being open and writing through or creating through some of the hardship is a healthy thing. Your physical challenges are unique, as are every person's. I wish you peace in your process. Keep arting it up, I can't wait to get into your Etsy shop!

    (One more thing, I hate to say it but this is no town in which to get medical care or accurate diagnosis. Honest to God I'm not sure I would even be diagnosed if this had all gone down in CRW. See external help, and do not hesitate to do so.)

  2. ...and something is for sure the bane of my mental clarity, but I think it's my 3 year old child. I gladly accept that situation with open arms! :)

    For real the worst is the pending heat. Thank God for air conditioning is about all I can say!