Archives for posts with tag: TBI

The drive to the office was relaxed and routine. My coffee isn’t bad (neither is it actually good, it’s just coffee). The view from the office window at dawn hints at a warm afternoon, later. A good day to be in the garden.

I’m in the office.

The waning “pink moon” setting as the day begins.

I sigh to myself. Breathe, exhale, relax. I take a few minutes for meditation before work begins. I plan the day ahead. I do a thoughtful body scan, and consider how best to manage my pain and the stiffness that results from the combination of sore muscles and arthritis. I seek the one, and try to avoid the other, but ultimately pain is pain; managing it as well as I can is a good practice. Not letting it run my life is an important choice. They both require a committed effort; there are verbs involved, and a steady willingness to care for this fragile vessel with a full measure of consideration, and my whole heart. I stretch and sigh again, before wondering “at what point is a sigh just a deep breath?” I let all that go and watch the moon set.

Yesterday was lovely. My appointment with the surgeon I was referred to went well, I guess, for some values of going well; I got referred to a different more specialized surgeon. lol Progress? I guess so. The Anxious Adventurer set up two more of the small raised beds for me in my new “west side garden”. It’s small space, and sure, it’s narrow, and limited, and the big A/C unit is right there, but… it’s also just outside my office window, and rather private (not visible from the street the way the front garden is). The first bed is already planted in strawberries, and since I started those from mature plants in 4″ pots, there are already flowers. I smile at the thought and yearn to feel the soil under my fingers as I fill the other two beds with soil and plant them with… something. I don’t know yet. It’s a spot that only gets afternoon sun, and I haven’t yet decided what else to plant there. Maybe just more strawberries? Something with flowers? Perhaps a clematis in that extra large black plastic nursery pot left over from when all my roses were potted (so many years, so many roses)? I smile, feeling my shoulders relax. I get so much joy from my garden I easily forget how I loathed the time I spent gardening as a kid. It felt like an obligation. A demand. Manual labor, nothing more or less, and I was sure that I had better things to do with my time. It felt like indentured servitude, then, and I longed to be 18, and master of my own affairs and decision-making.

What have you planted? How well do you tend your garden? (It’s a metaphor.)

…I’m grateful now for the time I spent in my parents’ garden; I use those experiences a lot, in my own garden, now. I’m still doing most of the labor. lol I don’t resent it any more. I appreciate help when I have it, but I love the work and my only resentment is that aging has robbed me of considerable strength and endurance for it… I have to choose my tasks wisely, and plan the work thoughtfully.

I hope the work day passes quickly. I’m eager to be back in the garden. I think about love and gardening awhile longer. I’d plant honeysuckle or jasmine instead of clematis, but either of those has serious potential to aggravate my Traveling Partner’s allergies rather a lot. I’ll miss them, maybe, but clematis offers lovely dramatic flowers, and will be less likely to be unpleasant for my beloved. I would not willfully choose to harm him. I think about how much I adore him. How my love is returned in equal measure; everywhere I turn in my home I see his love in the little things he has done or made for me. Even yesterday. New work skills, hobbies, creative endeavors, tools and materials, are often tried out or put to use the first time in some new something or other for me. I feel so loved.

A token of his affection, 3D printed, using Hue Forge.

The journey from being mired in trauma, sorrow, despair, or ancient pain is not an easy one. There’s no map. There is no sherpa to carry the baggage accumulated over a lifetime. There’s no handy tutorial. It’s a hard mile and we have to walk it ourselves, but every step, every moment, every sun rise is a chance to walk on, and to begin again. We become what we practice. We have choices. Sure, it’s a lot of work, and it’s often slow going. We stumble. We fall. We fail. It’s human – all of it, so very human. When I began this journey years ago, I only wanted to “be mostly okay” – to feel something good, at least as often as not. I wanted to manage the chaos in my head and to silence my nightmares.

I find myself, now, in a very different place – mostly thriving. Contented. Joyful. Even happy, rather a lot of the time. I wasn’t trying to get “here” – but once I got there, I just kept on walking. Kept working at healing. Kept practicing practices. Kept making better choices and slowly becoming someone more like the woman I most want to be. The journey is the destination – this isn’t new-age-y bullshit, although it is as metaphorical as it is practical – it’s quite real and you can make the journey yourself, from wherever you are now, to that place you most want to be, or at least someplace much better than where you feel you are. Keep walking. One day at a time. One practice at a time. One moment of studious self-care at a time. Making the decisions that the journey requires isn’t always effortless or obvious or even “painless”. Sometimes adulting is hard. I’m not telling you how to do the thing – I’m just saying it can be done, and hoping to provide some measure of hope and encouragement on what is admittedly a difficult journey. Life. Healing. Becoming. It’s not a journey of miles or moments, or hours or days – it is a journey frankly measured in years and decades. A lifetime. But the time does pass, and the miles do add up – and we do get somewhere as we go. Incremental change over time adds up. We become what we practice.

What are you practicing?

If I stopped writing today, I don’t know that it would be missed. There is so much life to live… I enjoy taking a moment to reflect on it, though, and doing so brings me great joy and peace. What about you? What are you doing to cultivate contentment? To find joy in your experience? To build emotional resilience? To become the person you most want to be? It’s not too late to make that journey – you only need to 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.

Whether or not whatever is causing our stress and anxiety is “real” – the stress itself, the actual anxiety is real. Strange how that works.

I sneeze suddenly and dart across the room to the corner where I’ve tucked my handbag, and scramble frantically through the contents looking for the travel pack of tissues I know is there somewhere. Damn it! Another sneeze, and now my nose is running like crazy and I dread finding myself covered in snot. I continue scrambling through the contents of my handbag a bit panicked, finally finding the tissues after I basically dump the contents onto the top of the printer in the corner. I return to my desk, feeling relieved, then my eye falls on an actual box of tissues right there on my damned desk, unnoticed, placed there by the cleaning crew over the weekend. I sigh, amused and frustrated, and astonished at the intensity of my absolutely pointless moment of stress. The stress was real. The cause of it wasn’t real at all; it was based on a misperception, a misunderstanding, an error in thinking.

“Anxiety” 10″ x 14″ – and she feels much bigger than that, generally.

…That’s often how stress and anxiety work; we respond to something in our thoughts or perceived experience without regard to the actual factual basis of the circumstances, and the stress builds so quickly we fail to “fact check” what’s going on around us…

I take a moment to let renewed calm sink in. I breathe, exhale, and relax. It’s a new moment. I begin again.

My Traveling Partner had asked me (some time ago) to help with some paperwork. I have been dreading doing it, not because it’s actually all that big a deal, but because… stress. My own medical trauma and difficulties with some sorts of paperwork has been getting in the way of helping him out. He’s got his own challenges and anxiety to do with it, but it’s mostly been about the practical difficulties with keyboarding for long enough to get it done. He needs my help. I am happy to provide it – in the abstract – but the reality of the stress it has been causing me flared up yesterday afternoon, and I found myself in a moment of headache and pain and stressful tears over… mostly nothing. It’s just not that big a deal. It collided with my awareness of the upcoming busy Tuesday calendar (he has a couple of appointments to get to, and needs help getting to those) and my upcoming time off (which appears now to need to include Tuesday) and my headache, and I just… couldn’t get my head around all of it calmly. I found myself facing a huge feeling of pressure and imminent requirement to get it all done. Funny – not one detail of any of it is all that big a deal, so… why all the stress and agita? Why the anxiety? What the actual fuck, eh?

Humans being human. This morning it doesn’t look like all that big a deal. I look over the provided checklist for the paperwork, it’s not all that bothersome, actually. The appointments tomorrow? The Anxious Adventurer stepped up, agreeing to take his father to those appointments. I took it in stride this morning when it turned out I also have an appointment, scheduled in between my Traveling Partner’s appointments, and which would have prevented me from taking him to both of his, regardless. Busy day. The paperwork? It’s just paperwork. Needs to be done so it can join a queue of other paperwork submitted by other human beings to be considered by still other human beings at some considerably later date. Just not that big a deal, I guess. But the stress was real. That’s an important detail; managing that stress was its own thing, with its own needs and its own steps. A real concern, for a real human being – and I’m grateful that my Traveling Partner recognized the need ahead of my own acknowledgement of my stress (which was escalating and confounding my ability to reason), and helped me address it, enabling me to more easily self-soothe, and get myself back on track. No tantrum, no meltdown. The headache lingered through the evening, but even that wasn’t that big a deal once the stress had been managed. Stress complicates everything by clouding our comprehension and judgment, making everything look like a bigger deal than it may actually be.

This morning, I breathe, exhale, and relax. I slept well and deeply last night – I clearly needed the rest. I feel like my body (and mind) have finally made the adjustment to the change to the clocks (good grief I wish we’d stop doing that). I feel more settled and comfortable in my skin. Okay for most values of “okay”, and ready for a new day (and week). The Equinox is coming, and so is my time off. It’ll be nice to have a few relaxed days painting, drinking coffee, driving beautiful roads to lovely destinations, and doing some painting. It is time planned to be very low stress. I hope it actually turns out that way, although the future is not written, and I have no way to know what obstacles may be on the path ahead. lol It’s a very human experience.

I’d like to spend a little time in the garden, too. So much of my experience in life is based on what I’ve planted, what I tend to. I think awhile about my garden as a metaphor… there are weeds to pull, seedlings to nurture, and a harvest in the future. For now? It’s time to begin, again.

My garden is a special place for me – and a useful metaphor.

I slept somewhat poorly last night, restless with pain mostly. My dreams were filled with chaos and uncertainty, and the occasional random spider. Odd. I woke in the usual way, dressed and left the house, head still full of chaos. My thoughts as I drove up the highway reflected the restlessness of the night and the chaos in my head; I reflected philosophically on a variety of seemingly unrelated ideas, the only connecting thread being my own individual perspective, as I exist today. Useful? Hardly. Barely interesting, already forgotten.

I get to work, in less pain than yesterday but still feeling it as a distraction. I take my meds, get some coffee. I sigh and get things set up for the day. It’s a routine work day and I’m grateful to be working…but…

…Fucking hell life is expensive, and “enough” doesn’t always feel like “enough”. I say this acutely aware that I write from a place of relative privilege. Things could be better, yeah, but they could sure be a lot fucking worse. (And have been, in past eras of my life). My pain grates on my nerves – but so does my feeling of discontent and stress over the future. (Will I ever retire? It doesn’t seem at all likely at this point, until lack of fitness for such endeavors forces me out of the workforce to exist on whatever resources remain. A grim thought, and I try not to linger in this place.)

I breathe, exhale, and relax. Some days it is a force of will to be in a positive frame of mind. This doesn’t mean inauthentically silently screaming positive aphorisms to myself in my head or forcing a smile to the people around me while I proclaim that “everything is fine” – that doesn’t work. “Fake it till you make it” is not my way; I haven’t found success there, myself. Instead, I rely on practicing gratitude – legitimate, heartfelt appreciation for the things that are working, the things that feel good, that things I have, or do, or feel, that truly lift me up. There’s a lot to be grateful for, and generally the very temporary feelings of stress and discontent will pass if I don’t dig in and build myself a trap to fall into. So, here I am. I “feel around in my headspace” looking for a route to reclaiming my sense of self, my perspective, my feeling of being empowered… I remember I playlist I started once-upon-a-time that might be helpful right now… “No F*cks“. Hmmm… Pretty short playlist. I distract myself wondering what to add that fits the theme. I have definitely found that a “positive distraction” can help shift my mood from the dark places my thoughts sometimes wander.

“Anxiety” 10″ x 14″ acrylic on canvas w/ceramic 2011

I breathe, exhale, and relax. I catch myself wondering about the background stress and the thread of anxiety running through my thoughts. What’s up with me? Is it work? Is it life? Is it my doctor’s appointment later today? Oh. Yeah, that could be it, for sure. I sigh quietly. Aging has it’s ups and downs, and the doctor’s appointment is no big thing, but it brings my anxiety about my pain and long-term wellness concerns more to the forefront of my consciousness, where I thoughtlessly push it back in the form of anxiety. “Saving it for later.” Unproductive. I take a minute with myself. I do a quick “body scan”, and an “emotional inventory”, letting myself be more fully present and in touch with the feelings and sensations in my here and now moment. More than the usual pain, but a lot of it is still “just sore muscles”. My headache is worse than usual – and my health insurer (through their bullshit evil middleman) has decided not to reauthorize one of the few things that really actually gives me some pain relief (not a prescription drug, but a physical therapy). It “won’t fix anything”, which is their justification for denying reauthorization, and that’s certainly true – but there isn’t actually a treatment that will “fix” my degenerative disk disease, my osteo-arthritis, or the headache (at least nothing has been proposed as likely to be a real solution, so far). I would think relief and improved quality of life would be a good choice, with that in mind…? I catch myself gritting my teeth with suppressed fury. The pain is bad today, and I’m annoyed because it didn’t have to be, and it may be getting worse before it gets better. Cheaper to addict patients to powerful painkillers and shame them for being junkies than to provide care that actually eases suffering. Fuckers. Another breath, and I let that go. I can care, even if my insurer doesn’t. My Traveling Partner cares. My doctors care. Those things matter. Doesn’t make it easier, but I’m at least not traveling alone.

I let the music play in my ears, and sip my coffee. Sometimes enough has to be enough – even when it doesn’t feel like “enough”. Sufficiency is often not what I want it to be – it’s only what it is. Things could be legitimately worse – far worse. I’ll make the best of what is – because that’s the path I’ve chosen to walk. That’s the woman I most want to be. Capable. Fearlessly self-aware. Doing my best. It’s not nothing – and sometimes something is all I need to get by for awhile.

I smile to myself. I feel it still. I definitely do. It’s time to begin again anyway.