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Clothes get on my nerves. My sciatic nerve particularly. My back is degenerate, like mortal and pestle grinding my cartilage to dust. The nerves make me squeal, any waistband or belt draws the pain into my groin. Be aware of the naked man, spread-eagled on 400 thread cotton sweat shop sheets, me filling the queen size with my nakedness and pain.

“Pain is always new to the sufferer, but loses its originality for those around him.”[1]

[1] Alphonse Daudet, La doulou: (la douleur), 1887-1895 (Paris: Librairie de France, 1930) p. 16; Julian Barnes (ed. and trans.) In the Land of Pain (New York: Alfred A. Knopf, 2002) p. 19


My left foot has been amputated. To my surprise,  a great deal of my left foot pain has been eradicated. I didn’t expect it, and most health professionals, and people with lived experienced with amputation, didn’t either. I could no longer walk on my left foot, switching it out for a prosthetic will allow me to walk again, which is the outcome we’re still waiting for as my wound heels. Stage Four Flat Foot was the name of my condition, indicating soft tissue could not support my ankle from rolling in and under itself. Aye, there’s the rub. I have “lousy cartilage genetics,” and my foot was once described as a birth defect expressing itself now.

My pain continues being original to me, as everyone’s is; and there’s plenty enough to go around my body. The last couple of days were difficult because of my increased activity.  My remaining limbs are picking up all the slack. This is most notable on my right side, which already has an artificial hip. Hopefully, I’ll be walking soon, to reduce the stress on my better foot.

Bad cartilage genetics is osteoarthritis in my back that’s disk degenerative disease and spondylolylisthesis.  Sciatica (good name for a geriatric metal band,) is what my parents’ generation called it, though in that case it is primarily one nerve, the sciatic nerve that is pinched. There are more nerves between more vertebrae and disks collapsing and pinching nerves. Spondylolylistthesis.just a little different in that the degeneration of cartilage and genetics, or trauma have cause one vertebrae to tip over forward the one beneath.
It’s also damn hard to spell.

I don’t have scoliosis, which is curvature of the spine usually moving to the right, giving rise to a hump like Richard the III my Tante Neufeld (who lived to be 94), and my sister. Then there are joints with repetitive use wear and tear, which is accelerated if you don’t have good cartilage. My sister, a former pianist and me still pounding away on this keyboard as if it was the manual typewriter I used in the sixties, have bad hand pain. My sister is ten years older, and her hand pain is worse. I’m noticing my other pain centres and new ones now the biggest one has been relieved.

Doctors know this pain is often made worse by bad weather changes, though they don’t know why. So level 8 pain on Monday and Tuesday, dark and wet, only six and declining today. I do have a fantasy of a pain free day, but it is a fantasy. Today my right side is generating most of my pain for the extra use it’s had standing in and supporting my entire weight, and that of my wheelchair when I chuck it into my van. I hold onto to the van’s grab bar with my left. So today it’s my right knee, my right hip, my right shoulder wringing pain, add the hands, especially now that I’m typing again, and the sciatica thing. Well to sum up. I hurt pretty much everywhere. Hello chronic pain.

I’m grateful for the level of pain relief provided by the amputation. But I still hurt pretty much everywhere else, and on bad days it can still get to 8. No, I’m not looking for a reason to extend my handicapped parking permit, renew my pain meds, or to keep boring people with my bitch and moan.  That’s just the way it is. Pain is an everyday part of my “new normal.”

Novel Memoir

pain room is a new project I am initiating, with Murray Toews providing the visuals.  This is where it starts. Should I be successful in my funding applications there is a plan to set up a separate domain and website. In the meantime I will start posting fragments, quotes, audio and additional images. The ultimate goal is production of an  novel pain memoir, with illustrations and animations. pain room is out of my comfort zone in experience, in writing, in preparing text including  stories, sharply drawn images and metaphors, and ideas across many platforms. There will be diversionary tactics, one liners, jokes, as reading about somebody else’s pain is out of most anyone’s culture uh, comfort zone, complicated by the possibility that as a writer, I might make stuff up. That idea is at the heart of these notes and stories.

The Corporal Patient (working name for now) lives in the pain room which we assume he can not leave. He is naked and talks directly or indirectly about his pain. In this instant he is in the (so-called) real moment, analyzing his pain as information.  An emperor with no clothes and no feet he has discovered a secret of pain management shared with him by a very wise woman living with Multiple Sclerosis. “Sometimes I imagine this is not the real world I experience, and that in the real world I don’t have pain, or certainly less than I have most days.”

Patient develops a rich interior life, where the moment is imagined, and he spends every day he can mange  (likely) as a historical figure,  sometimes a hero. His imagined moment shifts time, where as hero he can spend as much time as he likes and can meet anyone he wants.  Days come and go, but in the real world when he comes back from his adventure at day’s end, he is still Patient in pain. I’ve begun work (research reading, possible opening and structure, ending) for one of the stories called “Augustine on the Beach.”  Gus washes up on the Greek island Salamis, where Euripides is said to have written many of his plays in the cave, which provides shelter.  He finds the lost Oedipus play, and is visited by the writer, ghost of Euripides. A dialogue ensues. By the time Patient is settling in for the night we will have one explanation for how that play was lost.

So enough for today. Oh, I’ll also be collecting stories, dropping some quotes, and reading some passages related to pain, from outside the pain room (most likely).

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On a scale of 1 to (2) 10 where 1 is the least pain you’ve ever experienced and 10 is the most pain you’ve ever experienced, how much does it hurt? This line is asked repeatedly in the heath sector, especially in dealing with extreme pain, accidents, life threatening diseases, or trauma to determine the location and the extent of the pain. While this is on my blog today by tomorrow it will be on the page 1 2 10 where these post will become a separate text, not anticipated for publication, with the exception of some audio/visual materials.

iPad Note February 6, 2018


What to do when the less I do the less I hurt, unskilled in the art of not doing just breathing and being here. I keep doing, but never enough I want to do everything, and everything hurts. Body locks me up, restricts me to bed-rest for hours at a time. Brain says who heeds this mind body shit, let’s split!



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