on pain, writing and integration

Monday, April 13, 2015

Today, I shall make a slight departure from the usual fare. This is a highly personal post. In the past I’ve written mostly in passing about my health troubles. Here, I’m gonna dive right on in. Buckle up, friends!

As some of you know, I’ve been coping with chronic pain for over twenty years now. I first felt it when I was 14, and it gradually grew, so slowly that it felt oddly normal. It started on the left side of my sacrum, and I thought I’d worked out too hard. Over months, and eventually years, it shifted to my buttock, then my pelvic floor, then my leg, then both sides of my sacrum. Never quite the same place, but always in the same region of my body. My pain became progressively more debilitating starting in about 2007. It started to affect my ability to enjoy sex, to do SM play… to walk… to think. Eventually it got to the point where simply turning my head could cause my legs to spasm.

It took an absurdly long time to reach diagnosis. In retrospect I have lots of thoughts about why. But in May of 2012 an MRI showed that I had a tumour on my spinal cord that had been causing nerve pain as it slowly grew over many years. A rare form of cancer, not deadly or likely to metastasize, but very persistent. No known causes. Luck of the draw.

I had surgery to remove most of that tumour in the summer of 2012. They got about 80% of it, not wanting to dig too deep into the places where the tumour was embedded into the spinal cord itself. Recovery was a long process. I was numb in parts you *really* never want to be numb in. Basic bodily functions became major milestones in my days. For seven months I couldn’t orgasm. But things gradually came back online, and I felt better. I went from careful, shuffling walks around the block that first summer to indoor climbing, yoga and kayaking lessons the summer after. But even though I was able to be more active, weird things started to happen starting about six or eight months after surgery. The bottoms of my feet would cramp up mercilessly. My toes would twitch like little bunny noses for no good reason. My hip would persistently slip into sitting asymmetrically in a painful way. My sacrum started to ache.

Slowly, my pain began to come back to recognizable “there’s something wrong” levels. By the end of summer 2013, I was back in a state of constant hurting. And since then it has once again become quite debilitating. Bi-weekly nerve block injections and other treatments have helped alleviate my everyday pain, but only to a point, and only if I remain largely immobile. I sometimes need a cane for walking. I can’t stretch or exercise, or stand comfortably for more than a few minutes at a time.

Until recently my medical practitioners thought it was probably scar tissue from surgery adhering to my nerves, or biomechanical issues caused by many years of not walking quite right. I’ve been tested for what seems like everything. Ultrasounds, blood work, extra MRIs, electric-shock nerve tests… the works. And I’ve been working with a panoply of medical and para-medical practitioners to diagnose and treat my pain.

This month, a follow-up MRI showed that in fact the nub of tumour that was left behind after surgery has begun to re-grow – a full centimetre in the last year. I met with my neurosurgeon this week, and here’s the story: I’ll be having a second round of spinal cord surgery, deeper this time, probably within the next month, followed by radiation treatment to shrink whatever the surgeon can’t remove and to prevent any future growth.

Of course this is scary news. I’m really not looking forward to putting my poor body through more discomfort and difficulty. And the risks, while highly unlikely, are sobering: if something goes wrong, I could lose bladder or bowel function, or sexual sensation, or the use of my legs. But it’s also positive news: if all goes well, I will likely come out the other end of this in much better shape than I’ve been in for the past long while, and the relief from pain will likely last many years going forward. I can finally, maybe, envision a future that doesn’t require me to make pain management, medical testing and treatment a full-time job.

I don’t yet know my surgery date, and I don’t yet have details on the radiation treatment plan. That’s not really why I’m writing all this, though. Mostly I’m writing about this here because I’d like my realities to be better integrated.

For the longest time I didn’t identify as disabled, even though in practical terms I was, and could probably have benefited a lot from the services and accommodations that might have been available to me had I thought to ask. “Disabled,” to me, felt like a word that people got to use if they had a visible disability, something congenital, or at the very least something with a diagnosis and a name. Not this amorphous, it’s-probably-nothing kind of pain.

I also didn’t talk about or identify as a person with chronic pain. I didn’t qualify, I thought. I had an exercise injury, I thought for the longest time. I didn’t have pain 100% of the time, for the first many years – lots, yes, but not always. So clearly, I wasn’t disabled and I didn’t have chronic pain. Right? Wrong. I’m still trying to puzzle out why this was such a hard thing to understand, for me. Internalized ableism, sure, I’ll buy that. But that’s not all.

I think it was a mix of factors. Partly I didn’t want to appropriate an identity or terminology that I didn’t feel I had a right to – that was me being overly careful, really, but with the best of political intentions. Partly it was stoicism; my general approach to life has been one of surviving under duress and against odds, so complaining isn’t in my nature. I’m the strong one right? So I bear up.

Partly it’s the subjectivity of pain itself. When pain slowly becomes normal over the course of two decades, it’s really hard to tell when it crosses the line from “probably okay” to “something a human being shouldn’t have to live with.” It’s not like there’s a measuring stick. Nobody can see your pain and evaluate it. They can only see how you react, how you function, how distressed you look. And when you’ve spent a lifetime keeping your cool in the worst of situations, that skill can get in the way of a doctor recognizing what’s going on. When I first consulted with my neurosurgeon, I walked (carefully) into his office in sassy high heels. He told me with a tumour that size I shouldn’t have been able to walk at all. How should I have known?

It was the height of irony, for me, to come into a clearer political consciousness of disability, and a better understanding of what “chronic” pain is (jeezis fucking Christ, 20 years COUNTS already) just as I was about to have the source of that pain removed. Or so I thought. I would never have wished for it to come back as it has, but at least this time around I have better language and a better ability to self-advocate.

One thing I still didn’t own, though, was the idea of being a cancer survivor. Another thing I didn’t feel qualified to claim. Cancer survivors lose hair, breasts, lives. Cancer survivors go through terrible long treatments like chemo and radiation. Clearly I didn’t count – I just had an operation. The end.

Except that it wasn’t the end. It’s happening all over again. And this time around I’m coming at it from a different perspective. I think cancer stories need to get a lot broader. Cancer is a fucking epidemic, brought on, in my humble opinion, by the excessive and poorly controlled introduction of toxic petrochemicals and other poisonous substances into our environment over many decades combined with a range of other factors. Cancer affects far too many people, and far too fucking young compared to our parents’ generation. But the cancer stories we hear are the ones that have major mainstream marketing campaigns attached – pink ribbons and 5k runs for breast cancer, Movember moustaches against prostate cancer, giant lung cancer warnings on smokes. And we know how it goes: someone discovers a lump while putting on their bra one day, gets a mammogram, gets the bad news, gets a mastectomy, has the chemo and applies the corporate-supplied make-up and puts on the wig to feel like a Real Woman again. We don’t know about the weird cancers, the ones with different stories and pathways, different presentations and diagnostic processes. We don’t know about the people who survive without the standard narrative or the standard (read: straight, white, cis) identities. Cancer is a much bigger problem than ribbons and moustaches. We need more stories so we can recognize ourselves, help each other, maybe find treatment and heal faster.

Of course I’m saying this as I’m about to join the ranks of cancer survivors in a whole new way, what with my soon-to-be new venture into radiation treatment. Now I, too, will know the reality of daily hospital visits to get blasted with more toxic stuff in the hopes of killing off the toxic stuff that’s growing inside me. So… now I count? Now I feel I can claim the term “cancer survivor”? Ugh. I’m impatient with myself. I’m not proud that it once again took me this long to use the right words. But, well, here I am. And for all that I’m annoyed at my own reticence, I can also find softness in myself, compassion for my own process. There is no road map for cancer, or pain, or any of the other things our fallible, messy bodies can spring on us at any point in our lives. We are all vulnerable and there is nobody to tell us how to do it right. This having a body thing… it’s complicated. We do our best. I do my best. It’s good enough, because it must be.

I’m once again about to have the source of my pain removed. But I’m not as naïve about it this time around. I have high hopes, but I don’t know for sure that this will be the end of pain for me. I know I’m disabled, though I may not always be in the future, or perhaps I will be in different ways. I know I’m already a cancer survivor, and I plan to keep being one.

In the past couple of years, I’ve begun to write more about chronic pain, but only on Twitter, not here. (You may have noticed less long-form blogging in general in the past few years. Pain itself saps my ability to write a lot of the time, as it just eats too much of my focus.) I’d like that to change. I need better integration. I don’t want to make this blog a “pain blog” or a “cancer blog” – I like the focus here on Sex Geek as it already is. And I don’t plan to write a lot of pure personal disclosure posts like this one. I’ve never been shy to call upon personal experience for context and to provide examples in support of a point, but mostly I like to write analytically and politically here. I blog mostly about the politics of BDSM/Leather/kink, non-monogamy, queer sex, sexuality and gender, and that won’t change. Still, I may begin to integrate my perspectives as a person who lives with (or will have lived with) disability, a person who lives with (or will have lived with) chronic pain, and a cancer survivor when I write about sex and kink and relationships and politics, as for me they’re becoming really important parts of the lens through which I process and understand the world around me. And I know I am not the only one for whom this is true.

I’m also really aware that there’s not a lot out there written about chronic pain and kink, or disability and kink in general, though I see more all the time (and may eventually compile a link list). I do find the overlaps and intersections quite fascinating, so I may end up writing on these topics occasionally. And apart from blogging, I’m ever so slowly working on a memoir focused on the concept of pain, as I’ve experienced it from so many different angles in my own life. (You can get your fill of personal disclosure there, if ever it’s published!)

Anyway. Here’s what I ask of you, lovely readers. Please be in touch anytime you want. Invite me to teach or write or whatever else you were planning to invite me to do. I may need to say no, depending on how treatment goes, but I’m pretty hardy and I still need to make a living over here in freelancer-land – so please let me be the one to decide. If you follow me elsewhere on social media, know that I often read and post articles, analyses or funny things as a way of keeping my own spirits up. My social media activity isn’t necessarily a way to know how I’m doing, unless I’m posting directly about my health. And I’m not generally given to posting a lot about the daily details of my health situation. I need personal processing time before I tell the world about things, and some of it’s just not for public consumption.

I’ve been blogging for a good ten years. At age 27, I was just looking for a place to put all the thoughts that were brewing in my bright little head. I wasn’t really thinking about building a legacy of writing or creating a body of work that would serve as a community resource. That stuff happened thanks to the sheer passage of time. At 37, I feel ancient and tired – older and, I hope, a bit wiser. I can look back and say, wow, I’ve put a fuckton of words out there, and a fuckton of people have done me the honour of reading them. I plan to stick around. And I know that as I change, so too must my writing. I’m not young and carefree anymore. I’m limping toward 40 and I’m a bit jaded. But I have a lot of joy left to experience, a lot of perving left to perv, and a lot of thinking and writing left to do. I’m glad you’re reading it, and I hope you’ll stick around and see what comes next. I have no idea, myself, but I think it’ll be fun to find out.

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