I’m sipping my coffee and ignoring (as much as I can) the chronic pain of my osteo-arthritis, which radiates upward from my spinal fusion, which was done years ago, when the state of the art was quite different than it is today. I knew then that my surgery was a new approach to the problem, and that some outcomes were unknown. The goal was to prevent me from ending up in a wheelchair partially paralyzed, and to allow me to continue to serve on active duty (Army). I guess for most values of success, my surgeries were a great success. I’m still walking. I did continue to serve (was even deployed to war in the 90s’), after a period of convalescent “retirement”, although I got “RIF’d” after that war (which broke my heart, but is an altogether unrelated story). So, generally, I’ve nothing to regret about that surgery if I’m just thinking about those details. But…
…There were consequences – of both the injury itself, and the surgeries that followed. The arthritis started to develop in my spine about 3 years after my surgeries. I didn’t understand why I was in so much pain all the time, and it took a rather stupid amount of time for that to be appropriately diagnosed; I was young. Medical bias being a real thing, many doctors were persistently just as “mystified” as I was. What could be causing my pain? How could I have arthritis at my young age? I still feel frustration and annoyance by that lack of curiosity, and lack of diagnostic skill (or persistance). Pain they could not feel themselves did not matter to them.
Then, there were the other things… the persistent chronic itch below my left shoulder blade, that I couldn’t quite reach and that scratching didn’t ease. A “phantom itch” that still bothers me occasionally (CBT really helped with that). A chronically cramped muscle down low on my back, on the left side of my body, most likely a result of the disturbed section of musculature attaching to my spine being put back “not quite in the right place” during my surgery (to make room for the hardware that was there for a year) and which healed into a new, less than ideal, location. This, too, still bothers me, often. Most of it I had to “figure out” in pieces, with limited help from too many doctors, and a lot of study. Sexual challenges (both neurological, and also to do with practical matters like lubrication) that were awkward to discuss were another thing; I was past 60 before a physician finally said, with some surprise, “of course that’s related to your spinal injury” after looking at my records, surgical reports, and images, and listening to me with great care. She seemed so matter-of-fact about it, I ended up enraged for days that no one else had said as much. I went through some shit over that issue with more than one lover, I can tell you. Turned out it wasn’t “my fault” or “a lack of desire”, or anything I could actually do much about; I have a spinal injury. Duh. I spent a few days moping around pretty pissed off about it.
Why am I on about this, today? It’s to do with perspective and knowledge, and how those create our understanding (or don’t). I knew coming out of my surgery all those years ago that I had a permanent “30% stenosis”, and I felt that I understood what that meant. I mean, words having meaning, and I knew the meanings of the words…so… I understand? Don’t I? I thought I “got it”. My lack of real understanding was stunning, and it would be decades before that changed. It wasn’t actually a doctor that changed my understanding. It was math – and a moment at the dining room table with my Traveling Partner; a “lightbulb moment” to do with circles, that was completely unrelated to my spine, my injury, or my pain. lol (Pay attention in school, kids – math matters, and it’s useful stuff.) Something clicked.
What I hadn’t understood, in spite of seeing the images, reading the reports, and discussing with doctors, was what my stenosis meant in my case, specifically. For many years, I imagined 30% percent stenosis as a uniform 30% reduction in a circular area. (I felt pretty stupid when my understanding changed.) Firstly, the spinal canal as a “tubular structure” is not a beautifully perfect mathematical cylinder wherein a slice would appear circular. Not at all. It’s quite different than that. Also, and more importantly, my injury (which crushed two vertebrae, and broke off a spinous process which was then forced into my spinal canal by the impact and subsequently could not be removed) and the repair of that injury did not result in anything like a uniform reduction in area all the way around. Not even close.
Reality doesn’t care what we believe. Our pain doesn’t care what we think we understand about our body. Reality is. Pain is. Conditions are what they are regardless of our understanding. So, for years I had struggled with symptoms that made no sense to me – because I so poorly understood my condition – and which I could then not clearly articulate to doctors, who may also not have understood my condition, because (let’s just be real about this, eh) doctors are also human and also have limitations to their own knowledge (and limitations on the amount of time they can spend reading patient histories with the care needed). I understand more/better now, but… I’m still limited by all the things I do not know. I still live within a reality that I perhaps only partially understand because of those limits.
…And reality doesn’t care at all what I understand…
Our perspective and our knowledge limit our understanding – but reality goes on being real, regardless of what we think we know or how we think we understand the world around us.
I breathe, exhale, and relax. Living with the pain is pretty much a requirement. There is no option to live without it, at least not now, not really. I do my best. Maybe that reality will change at some point in the future? Technology changes. Medical progress is made. I’ve learned to practice fairly skillful pain management in the meantime. I’m not complaining, not really. Good self-care and skillful pain management may not add up to a “cure for pain” – but it does help.
I sip my coffee thinking about my Traveling Partner, his injury, his surgery, his progress… he’s come so far, so fast, relatively speaking (although I know it doesn’t feel that way to him). We both deal with pain, and I don’t personally see a future where that’s not a thing we deal with, each having our own experience, each doing our best. I feel fortunate to have a better understanding of my injury than I once did. I’m grateful for a conversation at the dining room table about math and circles and ratios and areas, and grateful for a partnership that understands pain and makes room for love anyway. Grateful for love. Things could be worse.
I look out the window. My mind wanders away from the pain I’m in – probably a change for the better. It doesn’t do to dwell on the pain. Don’t get me started about this fucking headache. I sigh quietly and glance at my calendar, and the clock. It’s time to begin again.
Evening Light 