I overlooked writing at all yesterday. I mean, to be clear, I “wrote” quite a lot, as a function of the work I do for a paycheck. A lot. What I failed to do was any other sort of writing: introspective, meditative, creative, nothing of that sort. I arrived home from work wholly exhausted, brain fatigued, dragging myself along on pure willpower alone, and the awareness that if I didn’t do this or that task, no one else would either.
… I managed to hold enough in reserve to make dinner…
I’m still tired this morning. My last several nights have been restless and my sleep interrupted and full of nightmares and stressful dreams of failure, futility, and pointlessly chasing unachievable goals. Hell, Elon-fucking-Musk even made an appearance in one of my unpleasant dreams and he was just as big a clueless out-of-touch douchebag in my dream as he is reported to be in life. Bleh. G’damn I hope I sleep better tonight.
I’m in a ferocious amount of pain and filled with resentment at insurers who don’t want to cover long-term services that maintain better quality of life and reduce pain, but without “fixing” anything. My occipital neuralgia flared up some days ago after quite a long time of only dealing with it occasionally; it’s clear that the additional care I had been receiving was actually reducing my pain. “Fuckers,” I snarl quietly, but I don’t know who I am most angry with – my insurance company or the rich assholes who built this stupid entirely profit-focused system. This is a fucking dumb way to approach medicine.
I sigh quietly. Let it go. I’m paying out of pocket for the care I need, today. It’s not a sustainable choice. I can’t do it often, but I definitely need some help managing the pain right now, after three exhausting work weeks that I am happy to put behind me.
Dawn on the marsh
It’s a new day. Boots on, cane in hand, this trail isn’t going to walk itself. For now I’ve got the place all to myself, a treat for my fatigued consciousness. Solitude. No people. No need to speak or hear words. I breathe, exhale, and relax. Today, self-care first. Then, I’ll begin again.
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.
What I thought I understood.
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.
Geometry for the win. lol
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.
Some thoughts about things to do with being, becoming, and connecting with people (that I’ve mostly learned the hard way):
Chronic negativity isn’t “humor”, nor is it a useful way to connect.
An uncomfortable forced laugh is less engaging than authenticity, even when that means admitting “I don’t get it”.
Constantly complaining about common experiences doesn’t make a person sound cool, edgy, worldly or sophisticated.
I haven’t been everywhere. I haven’t done everything. I don’t know all there is to know about every topic of conversation.
It’s a safe bet that I have something to learn, and that listening may reveal things I don’t know.
A lot of things aren’t about me at all. Some experiences aren’t for me. I won’t be welcome in every space. This isn’t something that needs to be “fixed”.
Being annoying results in being alone. A lot. (And not missed even a little bit.) It’s just not fun to be around – definitely behavior to be avoided.
Consideration is often overlooked and very underrated, and when practiced consistently and sincerely can seem like a super power.
Manners still matter.
Intimidation is a “cheat code” in life, and although people around someone who practices intimidation may be willing to exploit that behavior, they don’t like the person who behaves that way, except maybe in spite of it.
Good character has lasting value and creates a stable foundation in relationships.
Some people are mired in their anger (it has become a practice more than an emotion), taking that personally is neither healthy nor helpful. Being that person is a poor choice with lasting consequences.
Hard decisions can slow me down. It’s worth considering other opinions and new options. Ultimately the choices I make are mine, and so are the consequences. It helps to ask questions and reflect on the answers.
Learning is a practice. Self-care is a practice. Listening is a practice. Consideration is a practice. Respect is a practice. Authenticity is a practice. It’s all practice. There are verbs involved. Work. Effort. Self-reflection. Commitment. Getting anywhere worth going happens in increments, over time.
We can choose change. We can choose to become the human being we most want to be. Ultimately we are responsible for who we are, and who we choose to become.
There are some seriously unpleasant, annoying people in the world. People who lack manners and consideration. People who are unkind, mean, petty, and (or) intimidating (sometimes for personal gain, sometimes purely as a matter of poor character). It’s worth doing my best not to be one of those people, and to do my best every day to be the person I most want to be. I’m not critizing you or telling you how to live, just sharing some of my own thoughts about my own life, things I’ve learned, things I’ve observed over time, things I still struggle with. Doing better today than I did yesterday isn’t easy; it takes work. Honest self-reflection. A willingness to change.
… Trust me, I’m not smug about any of this shit. I’m working my ass off to be the person I most want to be, to learn from my mistakes, and to do better today than I did yesterday – every day.
…
It was afternoon when I wrote those words. I was in pain. I slacked off some housekeeping in favor of self-care. Choices. Did it help? I don’t know. I got through another day, and held on to enough energy to cook a good meal. It was enough.
The darkness before dawn.
It’s a new day, now. I’m still in pain – I nearly always am. I’m not saying that to complain, and I’m not alone with that experience. Chronic pain is pretty common, actually. Learning to enjoy life in spite of it can be a pretty difficult journey (a lot of the really worthwhile things in life are difficult). My results vary.
I woke this morning already uncomfortable and in an unpleasant mood. No idea why, really. Maybe just dealing with pain has that result, sometimes. I feel cross with myself, with the world, with the seemingly endless list of shit that needs doing. I’m tired of all of it before I even get started…
I breathe, exhale, and relax, as I sit at the trailhead waiting for enough daylight to walk the trail easily. I don’t feel like walking in the dark this morning. I remind myself to let small shit go, and not to take things personally. I take my morning medication and sip my coffee and watch the moon set through the clouds.
When my mind wanders back to things that irritate me, I bring myself back to here, now, this moment. I make a point of practicing gratitude; it’s exceedingly hard for discontent and irritability to compete with gratitude, and I do have much to be grateful for. The internal resistance to letting my mood improve and allowing myself to enjoy a better experience is frustratingly persistent, but I keep at it. We become what we practice. It won’t always be easy to follow this path, but it is a choice available to me, and it’s the choice I make. My results vary, and there are verbs involved, but over time the outcome is predictably good.
Every day is a new beginning. My path is paved with my choices. The journey is the destination – and the clock is ticking. It’s time to begin again.
I’m sipping my coffee on a rainy winter morning, feeling cross and irritated and in considerable pain. It’s the pain making me so cranky, but it’s “only” my osteoarthritis (and my perpetual headache), and there’s not much to do about it, really. I live with this. A lot of people live with pain, that’s a real thing. I sigh to myself, as I pull my posture more upright. It helps a tiny bit, though barely noticeable in the moment. The moments add up. I’m grateful to have gotten a good night’s sleep. I’m grateful to have what limited Rx pain relief available to me that I do (and am willing to use).
My reflection stares back at me from the window; it’s not yet daybreak, and I see a middle-aged woman with slightly tousled carelessly-kept long hair, glasses, wrapped in a warm (if a bit frumpy) sweater, looking back at me. She looks pleasant and approachable, relaxed, with a soft smile hinting at a life well-lived, and maybe some interesting stories to tell. She looks just a bit… amused. I don’t see the pain, just the smile, which reaches her eyes. At the corners of her eyes and her smile, laugh lines, no frown lines. She looks… capable. She looks ready for the day and unbothered. I find myself liking what I see reflected there in the window. I sigh again and think “you’ll do”, and take another sip of my coffee. I’m not at all sure how I got “here” – it’s been a difficult journey in spots, and I’ve often wandered off my path – but I’m okay with where I am, and that feels like a win.
I sip my coffee thinking about friends. Thinking about love. Thinking about errands I need to run. I think about hearth and home and all the things that add up to this life I live. It’s not perfect; there’s the pain, obviously. That’s its own difficult experience. I try not to take it personally. Things could be so much worse. Instead of living with this pain, I could have rejected having the surgery to repair my shattered spine, and taken a chance on things “just healing up” more or less, and most likely ended up in a wheel-chair, unable to walk at all. It can be hard to trust the opinion of an expert; we live in cynical times. I’m glad I did – I walk every day, and often see the sunrise from some favorite trail. The pain seems like a price worth paying for that privilege, most of the time. My irritation slips away. I chose this with my eyes open. I may not have understood the full measure of the price I’d be paying when I lay there sedated in the ICU so many years ago, but I knew there’d be a price. TANSTAAFL.
One cold winter night 40 years ago, I ran from a knife wielding man to save my own life. I took the only route available to me, that I could see in the moment, which led me to dangling from a balcony rail, dangerously high above a beautiful tiled patio, slick with ice. That man was my then-husband, who rushed to the balcony to plead with me not to let go. I looked back at him in a moment of unexpected clarity and calm, aware of my agency in a new way. The choice was mine. “I have to,” I said, and I did. The explosion of light in my head and the sudden pain that shot through me and my breath knocked out of my body overcame me only for seconds before adrenaline and terror drove me to my feet to seek help. It was a moment of profound change. One choice. One moment.
I sit with my thoughts a while. “I had no other choice” is reliably a lie. We have choices (many) – I know I’ve made a lot of them. Probably the worst choice(s) I’ve ever made? Telling myself I’ve no other choice, and and following the path that took me down. The menu in The Strange Diner is immense. We choose, on our own, to keep it folded, and to narrow our options willfully. Refusing to consider all the options is also a choice.
We’re born “a blank page”, and although we have little to say about our introduction to life, we have so many choices as we grow, and more once we are adult and free to do as we will. What will you do with it? The menu in The Strange Diner is impressively vast. What will you choose? Will you make your world (and your life) a better place in which to thrive? Will you walk a path that leads you somewhere beautiful? Will you take the steps that carry you to becoming the person you most want to be? Who is that? What will your legacy be? You have choices. Choose wisely. Pay the price. Don’t take the pain personally.
My tinnitus is super loud this morning. Distracting. Annoying. I breathe, exhale, and relax, as I absentmindedly rub my left trapezius muscle, up near my neck… Or is it my sternocleidomastoid? That general area. Feels like it is carved of stone and most of the time also a prominent source of day-to-day pain. I see one of my care providers today. He’s very skilled and I am hopeful that I’ll have a few hours or a couple days of real relief before my fucked up neck recreates the painful circumstances all over again. I’ve grown resigned to accepting that it is simply the byproduct of an old neck injury, combined with progressing degenerative disk disease (C3-C4 mostly and cervical arthritis from C5 on up to C1). It sucks and it’s painful, but, and this is important and real, it could be worse.
I walked down the trail listening to the crunch of boots on pea gravel, and I focused on the external sounds around me; it helps push the tinnitus into the background some. I got to a pleasant spot along the river to sit for a moment. The world is quiet and from here I can’t hear the traffic on the nearby highway at all. Whether this is an atmospheric phenomenon, a lack of traffic, or hearing loss is not clear to me, and maybe not even relevant to this pleasant moment. There’s a strip of color, not quite orange, on the eastern horizon, peeking between hillsides, silhouetting the trees on the far bank where the river bends. I have the trail and the park to myself this morning, alone with my thoughts (and my tinnitus, and my pain). Well… mostly…
I sit quietly as a rather large raccoon waddles past. She gives me a look and hesitates a moment before proceeding. I sit still and watch her discreetly from my peripheral vision hoping not to discourage her and choking back a laugh remembering the desk sign my Traveling Partner made for me (“most likely to be eaten by something she shouldn’t be petting”). As the raccoon continues past she’s followed by 2…3…4…5 chubby fuzzy youngsters, one of whom appears eager to get a closer look at me. Mom looks back and lifts herself on her back legs and makes sounds that clearly manage to communicate “Damn it, leave that human alone, you have no idea where that thing has been! Come on, we don’t have time for this.” It’s super hard not to giggle but I really don’t want to alarm Mama Raccoon – she’s pretty big, and I’m definitely not up for defending myself from an angry or frightened raccoon; they are not to be trifled with.
She walks on with her youngsters following, heading down the river bank. I walk on, too, heading back up the trail toward the parking lot. It’s daybreak. Good time to begin again.
Evening Light 