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Our Bodies, Our Pain

Showing our pain, our selves

We start by showing our pain to our parents and our partners. At first, it’s easy. We take our skinned knee inside and one of our parents gets a Band-Aid for our boo boo, wipes the grit away. Some antiseptic, and the bandage will protect us, especially once we have a magic kiss, we are all better. Check that. My mother would say; “oh, that will all be better before you are a grandfather,” in low-German. The Band-Aid plus the magic kiss was in our/my parenting.

Soon we are too old for such childish things and we must suck it up buttercup. We need to toughen the fuck up because showing pain is a sign of weakness announcing ourselves ripe for the cull. I’ll just give my summary here, as the stories go on somewhere else on this site.

I was told my mother left me in a baby buggy at the top of the stairs in front of an open basement door. Just for the few minutes to wash her new car, and for me to smash my face against the bricks and mortar wall. There were no pictures. No visit to the doctor.

 

No pictures, just a poem of the sexual assault on an empty island in Lake of the Woods. I wanted desperately to go fishing, my Dad had a headache, or a sermon to write. I was forever changed, and never told my family why. It’s not a very good poem. My first psychological pain 10 on a scale of one to.

I was bullied from grade two until grade ten when I especially went back for more of the same, after our torturous move to the city in the spring of 1969. I spent the summer and September of grade nine at a city school in agonizing pain.

Our GP could not find anything wrong, so the diagnosis was “adjustment problems.” He was wrong. Nobody, not anyone in my family or the doctor believed how much pain I was in. They knew I had changed, but Mennonites, boys (and sure, girls too) are expected to grow out of our adjustment problems during puberty without medical intervention.

What I grew out of was my hip. Finally the GP tries one more easy test, heel to buttock, couldn’t. X-rays showed I had slipped my hip. The joint between the femur and the ball joint don’t solidify until 18 years or older. My femur had slipped past the joint and yes, that would hurt, a lot. My first conscious 10 of physical pain, imaging a brick wall at 6 months would be just as unforgiving.

Skip ahead to the 21st century, and I’m working downtown. I bend over to pick up twoonies, but it was an icy February in Winnipeg and I was crossing Portage to Notre Dame. I had to hurry and stumbling slipped at the curb and down I went. I fractured my ankle which was patched up at the Misercordia Hospital where I had my hip pinned and unpinned as a teenager. The children’s ward was on the fifth floor from which seniors now wave at Maryland bridge traffic. I was wearing braces on my ankles.

Joint pain started soon after and by 2012 it was time to do something about it. Since then I have had seven osteoid surgeries, most recently a below the left knee amputation, April 5, 2018. I have “lousy cartilage genetics,” which affects every joint. I will endure; but it hurts, it really does. The doctors discovered I had an allergy to morphine after my first surgery, which made my already irregular heart race. Finally they gave me fentanyl and it worked incredibly well.

Even though getting fentanyl after my osteoid surgeries (after that experience), was part of my surgical and recovery plan, it took 24 hours of hell (Tylenol 3s were tried) and my wife’s intervention tearing them a new one I think we say, before it was provided. So only two days it’s true, but back and forth from 9 to 10 on a scale of 1 to 10, where 10 is the most pain and 1 is the least, how do I rate my pain?

How much does it hurt is one mystery after another. Each body and mind are different and each body and mind respond differently. I’ve read about a handful of people who do not experience pain at all which can be dangerous of course, but if it’s a genetic modality might there be a way to find a compromise in our biology. The challenge is immense, I repeat each body and mind are different and each person therefor will respond to medicine and treatment differently. That goes for psychological pain and treatment as well. Here I’ll just stick to my bones.

My joints are or are becoming bone on bone. Remembering 1969 I am anxious about the likelihood of experience pain10 again. This is where it gets more complicated in talking abut opioids like Percocet. I’m stepping away for a few minutes to take my medicine before I can resume.

It’s now the next day. I was able to hop out of bed, and put my brace on my right ankle and my below-the-left-knee prosthesis. I woke early to heavy pain, and check the clock yeah 6:30 is close enough, and medicate. An hour later I am able to move with pain subdued while I make the essential strong dark roast coffee. It’s medicine my sibs and me enjoy. Its benefits can be tracked back to the “old country” and my grandmother. My joints still hurt but in the <5 instead of 5>plus. The pain never really stops, and one of my problems is waking up in the morning and realizing there will never be another pain free day in my life.

But my pain is reduced enough to work. In my case I was able to push successfully for the Manitoba Book Publishing Credit and its renewal, be part of the Symposium on Manitoba Writing to celebrate the 30th anniversary of the Manitoba Writers’ Guild, organize and fund-raise for the Envoi Poetry Festival, and publishing the three last issues, anthologies of Mennonites writing in 2017. Following my amputation in 2018 I chose to write full-time. “No Optional Striving,” written on a post-it note by Philip Roth before he died. During this period I completed Afghanistan Confessions published in 2014 and Love & Surgery in 2019, supported by a 16 day western Canadian Tour I pretty much organized myself.

Lots of thank yous to everyone; editors Ted Dyck for Afghanistan Confessions, and Sharon Thesen for Love & Surgery, and all those who put me up and put up with me when I was traveling. My colleagues at the Department, the MWG salvage crew, Stephanie George during Envoi, Greg Giesbrecht and Mennonite Literary Society colleagues, Murray Toews for his images and patience.  My families and my  friends going back to school days.

After my amputation I surprised many by my speedy and whole-some rehabilitation, even though it was easier now than ever to show a disability; the psychological one a chimera.

Most of my peers don’t know about working while hurting in psychological pain since childhood. Some do. More than you’ll see, though it’s more common now, sometimes it’s hard to distinguish between “self-id’ers,” or those with mild to moderate mental disorders (usually I suspect my high functioning parks me here in other peoples’ minds) and those of us with moderate to severe mental illness.  This need not include psychosis (but it can) suicide attempts (suicidal ideation is more common) or hospitalization (it does happen.) I called my illness by its first name working with Dr. Fleischer 20 years ago.

My paranoid self, my catastrophic thinking self imagines what my peers are thinking, “oh, boo hoo, look at the jobs you’ve had!” I can hear whispers that my ability to make things happen and get shit done this century is a) further proof of my managerial skills as an arts advocate not my good writing, b) I can’t really be in that much pain, mental or physical to do all that, wrapped up with c) isn’t he old? So what do I do now? Show my resume since 19 when I was (co)editor of the Manitoban at the U of Manitoba. My ability to drink hard, and work hard all good in the 70s. I hear that’s changed, and I’m glad of it. Finally getting a grip and getting help in the 1980s to be a good Dad…and still do good work, and realize family was more rewarding than poetry and pain, (no books between 1985 and 2005)  Here the thank-yous go to my sister-in-law who got me referred to the Regina Mental Health Centre and Dr. Cebrian Perez who saved my life (the first time), and then Dr. William Fleischer (saved my life the second time) and now Dr. Bob who watched in  astonishment as I quit drinking more than two years ago.

I suspect people think “He’s playing the disability card. He can’t get a real grant because of the weakness of his writing, so now all-of-a-sudden he is disabled! Even wants to be recognized as a multi-disciplinary artist, without any relevant training? Bugger him! He hasn’t suffered. At least not as much as me or as much as he claims.”Yes I see the problem with this logic, it suggests either they, or I, or both parties believe it’s easier to get a grant as a disabled person. This saddens me. I may have been born disabled (talking about my mental illness) or aged into my disabilities, though the surgeon notes, most likely is just my really lousy “cartilage genes.”

Invisible disabilities really, until my body ramped up real physical pain. Which is were I started this rant. I was by most accounts precocious. I was not prepared for what this meant at 60 instead of 16. Since my below the left knee amputation on April 5, 2018, my disabilities are showing themselves. It’s the pain that’s so hard to measure or for other people not in pain or also in pain to measure. All we have is still is “ On a scale of 1 to 10 where 1 is the least pain you have experienced and 10 is the most. How much does it hurt. Subjective measure.

I was taken aback when I suggested I’d like to invent patches, or now something like the temperature gun used in this pandemic (Now that’s spooky!), to measure pain to one of my doctors. “Well why not invent something that will give you a diagnosis right away,” he snorted. I wish I had said; Crap, sir. I just wanted you to know in the best possible way we could have pain measurement that you would believe and accept. In a different appointment I started to cry, he asked about my psych care. I assured him that was good. He left in a hurry, couldn’t stand to see a man cry in pain. Behind this just a whiff of “it’s all in his head.”

I take pain medication, receive psychotherapy, meditate an hour a day and stay in touch with my family and my friends. I am now trying CBD oil with a tiny bit of THC. Not liking it much. All of this helps subdue the pain enough so I can work which is another good piece of my pain management strategy. I write over the pain. It’s when my hands go that pain is in every word. Almost literally. Shutting the door on the noise with meds and meditation, opening the door to my imagination. The noise is still audible, even with the door closed. But that seems to allow just enough “quiet” for me to work. Though I can hear Santana ripping “I hope you’re feeling better.”

He was the kind of guy to hire an independent actuary to bet on  his time left in the game.

 

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