This headache is vexing me. I feel as if I’ve done all I can to ease my discomfort. Have I? A bad headache can limit my ability to think clearly and make wise self-care choices. I let my Traveling Partner know that I’ve got this pretty terrible headache. Doing so isn’t only to feel less alone with it, nor is it solely about making sure he knows if something goes seriously wrong. As much as anything else, it is to get any helpful suggestions of things to do about it that I may have over looked; thinking through the pain is difficult. I know I’m not at my best.
My beloved does indeed think of something I could do that might help some. A hot shower. That does sound soothing. Maybe a soak in the hot tub, too? I stretch – maybe movement will help. I correct my posture. I adjust the lights. I make myself relax (again). I drink more water. I have some magnesium. I eat a banana (potassium). I take an OTC headache remedy. I limit the noise in my work space. Item by item, I go down the list.
… This too will pass…
Headaches tend to be temporary. Soon enough the work day will end and I can focus on me. I’ll have that shower, a soak, maybe lay down for a few minutes. A great many of my headaches are to do with my neck. Degenerative disk disease is painful and inconvenient, and like the name says it gets progressively worse over time. I try not to think about that. The thought brings tears to my eyes and I feel suddenly helpless and childlike.
…It will pass (for most values of that idea, if only temporarily)…
Not what is generally expected of office decor, but it’s my office and I’ll decorate as I like. lol
I think about this cozy friendly welcoming space I’m in… It’s quite soft and nice and filled with colors and curves and soft places. It’s a very nice spot to lay down with a book (or a headache). It was my studio, it is my home office – my quiet space. Everywhere I look there are reminders that I am loved and valued: helpful or beautiful things my beloved has made for me, precious things collected over time, souvenirs of a life well-lived, and my own art work. It’s a nice spot to enjoy a quiet moment.
I sip my icy cold glass of water. Ice water might not be ideal for some headaches – this one doesn’t care about that. It doesn’t react to the temperature of the water at all. Noises are a bigger deal. The position I’m in matters more. I’m fairly confident this headache is coming from my neck; my left ear itches ferociously deep inside without any obvious cause. Nerve damage. It’s all quite unpleasant, but saying so is better than hiding it, and caring for this fragile vessel helps more than ignoring the pain ever could.
I sigh to myself and get back to work. The work day is nearly over – then I can 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.
Huh. Just for a moment I had the strange sense that I was completely wrong about the day, and that instead of the Monday I was thinking it was, as I sat here in the office, it was – perhaps – only Sunday, and I did not need to be here at all. A quick double-check of the calendar (and then my phone, and then the tiny date/time at the bottom right of my computer screen for good measure) reassured me that indeed it is Monday. I may not be overly enthused about that, on its own, but I am at least not incorrect about what day it is. lol
A perspective on some orange flowers.
The morning has been a slightly odd one. I woke much earlier than necessary, but got up and made coffee and hit the road anyway. I didn’t have quite enough time to return to sleep, and definitely did have time to make a point to remember my packed lunch, and to make myself some good coffee. Even the commute was somewhat strange and definitely not routine in any way aside from the route I took. I hit every traffic light green, and there was almost no traffic at all. I drove the speed limit, feeling unstressed, unbothered, and unhurried (which makes sense since it was quite a bit earlier than I am usually on the road). The office is chilly in a Spring sort of way, and my thoughts linger in my garden, in spite of the darkness beyond the window. Funny thing; the weekend was quite productive, and I seem to recall it feeling “busy”, but… at least for the moment, I don’t really recall anything that stands out as eventful or special. No, I’m wrong – one thing does stand out; my Traveling Partner rebuilt, refreshed, and enhanced our household automation, updating and correcting some out-of-date programming and making upgrades that had been planned before his injury. Quite successful and useful, and delightful to use. There’s that. That stands out. Nothing much that I did comes to mind at all, but damn I’m sore like I did a bunch of stuff. LOL I also didn’t do a bunch of stuff – I was supposedly “taking it easy”, but I don’t feel like I actually managed that trick. Feels like I just did other stuff, instead of the usual stuff.
Same flowers, different point of view.
I rub my eyes, yawn, and sip my coffee. I still don’t feel quite awake yet, which is strange; I’ve been awake now for almost 3 hours. Groggy. Foolish. Mind wandering. Feeling vaguely purposeless and “out of focus” and caught in a sticky web of random thoughts and distractions. My sleep was restless, interrupted, and filled with strange dreams. I may not “need” more coffee…but I’m sure going to have more! lol The morning feels a bit surreal, so far. And chilly. It’s chillier in the office than it has been. As if in response to that observation, I notice the small heater that was left in this office space at some point. I sip my coffee and consider the option to use it, without acting on the thought. I could, though… If I choose to.
A different angle on the same theme.
I sigh to myself, and try to shake off my grogginess by literally trying to shake it off. The sight, reflected back at me in the window makes me laugh. The laughter does more to wake me up than the shaking did. I sip my coffee, now at that “perfect drinking temperature”, and think about my Traveling Partner sleeping at home. I hope he gets the rest he needs – he has a day of work planned (and specific projects in mind) with the Anxious Adventurer’s help. He’s recovered from his injury and surgery to a point that he has begun “picking up where he left off” on all manner of tasks and projects that fell to the side when he got hurt, although he still has a way to go before he will be “at 100%”, maybe a long way to go (there’s quite a lot of work involved in fully recovering from a spinal injury and surgery). I feel relieved and delighted to see him doing so well. I can’t even describe how worried I was at some points, and I don’t like to think about it.
It won’t always be flowers and garden paths; sometimes it’s an uneven path, an uncertain destination, and a distant horizon.
Being a caregiver has been one of the most difficult things I’ve ever undertaken. I give myself about a “C” on that endeavor, if I’m honest. Even with all of my best effort, I lacked experience and skill, and I fucked up a lot (and I was exhausted all the time), and I could have done so much better given time and training and more practice – but that wasn’t how things went down. I did my best. I can say that, and for most values of worth, it was enough – but fucking hell I wish I could have done more/better for longer. Caregiving is fucking exhausting. If you know someone who is a caregiver (or, frankly, a parent), be appreciative, considerate, and kind; that’s a lot of fucking work they’re undertaking to do, on top of trying to live their own life and manage their own self-care, and possibly also working a full time job (especially if they are committed to doing all of it well). Fuuuuck. That’s a lot. Sometimes it can feel like an inhuman amount of effort is required, and it can feel like the stakes are “too high”. Be helpful if you can – and for sure just don’t be an insensitive jerk about the situation, most especially if you’ve never had to provide full time caregiving yourself. It’s a hard mile to walk. I worried the entire time. Worried about the future. Worried about my beloved. Worried that I wasn’t good enough or capable enough – and painfully aware that things could be still worse.
Walking my own path, one step at a time.
I breathe, exhale, and relax. It’s just a routine (mostly) Monday. Things are okay for most values of “okay”, and the day begins well (if a bit groggily). It’s time to get on with that. Another beginning. Another day. Another mile to walk on my path. 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.
