An elderly woman boards the train carrying several bags of groceries and a middle-aged man carries a toddler on with ease. Many commuters are hunched over their phones, typing and swiping for the duration of their journey while one teenage girl is standing, one hand raised up to grip the pole behind her, the other holding her book.
I repress that familiar feeling of bitterness and envy and look down at my hands which sit placed on my lap, useable yet useless. My fingers are curled in the way that always happens when my muscles tighten and my nerves burn, I try to focus on my breathing, on mindfulness, on anything that might help my body ease up just the slightest and give me some microscopic moment of relief.
I swallow the bitterness but when it reaches my stomach it becomes sorrow and once again I find myself crying in public. I find my mind fixating on the thought of people who spend countless pain free hours on video games, who can mindlessly utilise their hands for pleasure. What I wouldn’t give to have just a few hours to paint free of pain. What I wouldn’t give to have back the freedom I took for granted until I lost it.
Pain is a demanding companion, constantly clamouring for my attention. For the last several weeks my pain has sat at about a 6 out of 10 and while that isn’t as bad as it can be, what tortures me is how little I can do about this, how it is exacerbated by any sort of use of my arms so that my only real option is to wait this out but that waiting it out only means waiting for a decrease in pain because I can’t remember the last time it went away completely.
I truly have forgotten what it feels like to be completely free of pain. Every day is a negotiation, if I decide to drive for more than an hour, I may not be able to do anything else for the day. If I decide to sit down and write an email or two, I might not be able to paint for a week; if I decide to draw for an hour, I might be in especial pain for the next three days; if I use my phone, it will hurt; if I vacuum, it will hurt; if I bake, or weed the garden, or handwrite anything, or simply sit still to read a book or watch a show, it will hurt. Writing this is definitely going to cost me, despite the fact that I am using voice dictation software to make the process easier.
I am a person who thrives on activity and creativity but doing so little now costs so much. The things I love to do the most cost so much. Very often these days, my body feels like a cage and I have to fight the irrational but powerful desire to attempt to gnaw off my own limbs.
I was chronically ill in my childhood, bedridden on and off for many years and I still feel affected by the spectre of that experience. I have memories of immense loneliness, crushing boredom and claustrophobia, the feeling of being a burden to my loved ones and the despair of not being able to imagine any sort of future for myself. I remember at about 13 years old, I started thinking regularly about suicide; the idea enticed me, it seemed as if it would be an incredible relief, especially if I could find a way to do it painlessly and quietly, but the thought of causing my family that sort of pain held me back. I’m glad that despite my self-esteem being devastated by my illness, I was still able to understand that I was loved.
The other thing I remember from that experience was how many people told me I was faking it. Kids at school, their parents, family friends, relatives. So many people told me I was faking it that to this day I somehow don’t quite know if I was sick for all those years or if it was perhaps some early manifestation of the anxiety and depression I experience as an adult but now have the self-awareness and coping mechanisms to be able to manage relatively well.
Children have few defences against the unkindness and scorn of others. I felt an incredible sense of shame and began to dread being seen by people, for fear they would turn to my parents saying “she doesn’t look sick at all!” As an adult my response might be along the lines of “but you’re sure as dumb as you look!” but as an 11 year old, I just felt judged. Ashamed. Grotesque somehow. I can’t articulate why exactly, but I felt like I was failing at being what I was supposed to be and this made me feel ugly.
If I’m honest, I often still feel that way now. When I was a child it was Glandular Fever left undiagnosed for too long that became many years of Chronic Fatigue Syndrome culminating in a deep and abiding depression that I only managed to pull myself out of when I dropped out of high school, where I was too far behind to ever catch up, put together a portfolio and went to art school. I then had seven of the best years of my life, four years of art school and three years of working and living in Melbourne. Then I got Repetitive Strain Injury in both my arms which only recently has been given the tentative (but I believe to be correct) diagnosis of Thoracic Outlet Syndrome.
I could write about going through almost 5 years of unsympathetic doctors, misdiagnosis, misinformation, and bad medical advice that exacerbated and worsened my injury. I could talk about the miserable attitudes of the places I worked. I could talk about the incredible amount of money spent desperately trying to find a solution. It might be cathartic to write about those things but it would also fill a novel and be incredibly boring for anybody who is not me.
Instead, I will simply say this: for the longest time I blamed myself for my RSI. I told myself that I worked too hard and had caused the injury and a few years into my RSI, I told myself it was my fault that I wasn’t better, I hadn’t worked hard enough at fixing it. Basically, I blamed myself for working too hard and then blamed myself for not working hard enough.
We get told two stories in our culture. The first story is that if you want to succeed, you have to work hard, long and passionately. When I did that, it hurt my body. The second story is that if you are sick or injured, you can overcome it through sheer force of will and possibly a montage involving drinking kale juice, running along a beach and pumping iron with the assistance of a hot personal trainer. I’ve tried to get better in so many different ways and I continue to do so. Sometimes I do come across things that help and improve my quality of life but I am yet to climb Mount Everest using nothing but my teeth.
And sometimes I give up in despair. In fact it is a regular occurrence. There have been times when I have said “FUCK IT” and painted for too long, spent too long on the computer or neglected to do my stretches and exercises because sometimes they feel futile and I am just so tired of trying. During those times that I give up, I feel overwhelmed by the enormity of my failure and the physical pain feels like punishment for my weakness of will.
There is another story we tell ourselves in our culture and that is regarding the omnipotence of our doctors. I’ve lost count of the times I’ve been in conversation with someone who has repeated over and over again “Surely there is SOMETHING they can do! I can’t believe there is nothing they can do!” But the truth is bodies are complicated, medical science is still playing catch up and there is so much we are yet to understand. Until relatively recently, RSI was considered psychosomatic (an attitude I’ve seen still reflected by some of the doctors I have seen) and even now it is poorly understood. The surgeries are crude and have a poor rate of efficacy, in fact they can make the problem worse. I have tried a great multitude of treatments and the best results I have gotten is from deep tissue massage which only serves to relieve the pain temporarily, not fix the underlying cause.
But that attitude people have of doctors being all knowing, of medicine having a solution for everything – that is damaging. It hurt me when I followed poor advice and worsened the damage on my body. And it hurts me now when people don’t believe this has been as hard as I say it is. Effectively, I feel they are telling me that I haven’t tried hard enough.
I think I can understand this. I think that when we look at other people’s problems, we imagine that we would not get ourselves into such a situation. We like to believe we are smarter, stronger, better than the person who is struggling. It is perhaps comforting to think so.
I also believe that we have an almost animalistic reaction to those who are injured or ill, a fear of being infected by them, or of them holding back the herd. Whatever it is, weakness makes us incredibly uncomfortable and I can feel that when I talk about my injury or, as I am starting to think I should more aptly call it, my chronic condition. People don’t want to know, it is perhaps easier for them to view me as weak, whiny, overdramatic. Hell, for the longest time, I saw myself that way.
Another thing I have noticed is how often RSI, particularly carpal tunnel, is the butt of jokes in popular media. It is the imaginary affliction of hypochondriacs, drama queens and airheads. It is hard to conceive of an invisible, poorly understood affliction as being life altering. Perhaps this is the other reason I feel shame. Perhaps this is the other reason I ramble awkwardly and feel self-conscious when I speak to people about my experience; able-bodied people cannot imagine what it is like to have to pay the price of pain should you choose to do anything pleasurable, productive or necessary.
The other problem is that every second person has had RSI. Well, they’ve had pain from typing too much but it eased off quickly when they stopped typing or had a session or two of dry needling. That experience of RSI is very different to mine, just as mine is different to the people who have had it for 15 years, who have had permanent nerve damage, botched surgeries and who cannot even use a can opener. Because RSI is a blanket term, people struggle to understand that the temporary ache they have experienced in their hands is different to this thing that I fear might leave me unable to work for the rest of my life, the thing that makes me jealous of people who get to complain about the hard day they had at work.
Last year I was about to turn 30 years old and not long after that would mark the 4th anniversary of when I first noticed that tell-tale tingling in my right hand while I was video editing. I was unemployed, often in pain so relentless that I would wake in tears, unable to hug my partner in bed because of the discomfort and I felt completely worn out. I was tired of fighting and for the first time since I was a young teenager, I started to think about suicide.
That time was too recent for me to comfortably talk about in detail. Suffice to say, it was a dark, miserable period and Wes says it was terrifying for him. And Wes probably kept me alive.
Wes who has supported me financially for all these years and never makes me feel guilty about it, knowing how unhappy I already feel to once again be a burden on someone, though I know he doesn’t see it that way. Wes who massages my trigger points every morning and every night so that I can sleep without my hands going numb. Wes who has held me countless times while I cried for an hour. Wes who, simply for being in my life, reminds me to be grateful.
Here is what I am grateful for. I am grateful to have a partner who is consistently and unwaveringly supportive and loving. I am grateful that though it stretches our finances to the limit, we can afford my weekly myotherapy sessions that have decreased my pain somewhat and allowed me back into the studio just a little. I am grateful for the financial support my parents offer when they are able. I am grateful for having legs that can take me on long walks when I am in too much pain to sit still or do anything much else at all. I am grateful for Netflix documentaries that keep my mind stimulated when I feel starved and allow me to travel when I feel claustrophobic. I am grateful for audiobooks; where sitting still and reading for long periods of time has become difficult and painful, audiobooks have brought reading, of a sort, back into my life and currently I am devouring everything by Octavia Butler with relish. I am grateful for the incredible comedy group I am a part of, it has given me the sense of direction I lost, the creative outlet I craved and the sense of identity I needed. I am grateful for the incredible network of people I know who fill my life with colour, creativity and support. I am grateful for the stray cat, Dicey, who followed us home and now follows me about the house, keeping me company when I am broke, sore and sad and giving me a sense of having a future. I may never be rid of this pain, and maybe, Atheist’s God forbid, it may even get worse as the years go by, but for perhaps the next 16 years I’ll have a cat with a tummy that is soft, furry and made of joy.
It’s hard to talk about how my RSI makes me feel, how emotionally challenging this has been because I have felt so ashamed for how much this wears me down. But here it is, the truth is this injury has changed my life dramatically. In many ways, my life is worse, everything is harder and my future feels shaky and uncertain. Often, I feel vulnerable, lonely and unhappy. Sometimes I feel bitter, petty and jealous. Sometimes I feel grief for the self I was briefly able to be, the incredibly capable self who earned her own money, painted all day when she had the time, read in her spare time without pain, wrote constantly in her blog and looked towards her future with excitement. Sometimes I feel irreparably broken, indescribably weak.
But recently there have been some minor changes to that mindset. Recently I have stopped blaming myself so viciously for my injury, I refocused that anger on the doctors who told me there was nothing wrong, the work colleagues I had to battle simply to get basic ergonomic equipment and the society we have created that values ambition over compassion, competitiveness over kindness. This has been healthy for me. I am slowly coming to understand that this is not my fault and that I have tried hard. Really damn hard.
With that understanding comes a new sort of self-esteem, the sort where I can look at myself sometimes and admire my strength, my fighting spirit and my passion that keeps me being an artist despite how goddamn hard that is now. I’ve also learned to be more patient, to sit still and enjoy watching a tiny winged insect crawl across my hand even as my body throbs and burns and I now observe people who barrel through their lives doing a million incredible things, taking for granted a million different privileges but who can’t slow down long enough to enjoy any of it. I deeply believe that the struggles I have had over my life give me a compassion that I see sorely lacking in some others who have never been ill for a day in their lives, and the perspective to value, truly value, the gifts that life does happen to throw my way. Though the price I’ve had to pay for it can feel unreasonable and unfair, I treasure that compassion and those moments of wisdom. Lately, despite the continuation of the pain, the fear, the misery… I am finding ways to be happy again. Truly happy.
This is not to say I am happy with the way the dice has rolled for me but I know that it could be worse, so much worse and so I remind myself that in a universe indifferent to us, we are simply lucky to exist. On the days when my pain calms down and I can paint for an hour, I am so grateful and so happy that for a while everything else flows into the periphery of my vision. Joy is so precious to me that when I have it, I feel the ever-loving fuck out of it.
And of course I will never give up. Acceptance is different to defeat. Maybe I will never get better but I will never stop trying. The alternative choice is unacceptable to me.
Yesterday I found out that Invisible Illness Week had just passed. I missed it because I haven’t been online much recently due to a spike in my pain levels. It motivated me to write about my experience and I have endeavoured to be as honest as I possibly can. It feels uncomfortable to speak quite this openly about my experience but reading about other people’s struggles has helped me to feel less isolated and to find new reservoirs of strength within myself. I’m hoping perhaps my truth will resonate with someone else, perhaps even help someone.
I’m going to post this now before I chicken out. If you made it this far, thank you so much for reading. I think that most anyone who has ever hurt will agree that being listened to is all we really want from you.
Soft, furry and made of joy.
I read every word. I stopped my busy mind to listen. May the soft and furry tummy of your pain stay warm. To love & be loved is the greatest gift. My hope is that you are surprised by joy today. Your friend forever, Simone X
Chronic pain became something that binds me to my bed half the week, but somewhere along over a decade of my body shutting down in too many ways to think back on… I forced cheer into everything everywhere and as much as the song “Bad Body Double” (Imogen Heap) is more literal and severe/harsh when thinking about the “bad body” I say “I hate her I hate her I hate her” about too many components of… long before that song came out, this “back to my old self again” desire became a necessary trigger for survival techniques. I found out that living around elderly people and helping them, given their fierce fighting of things that while not as acutely scary as my visits with death’s door, were more scary in a sense–for them, death is guaranteed to happen pretty soon, and every tiny ailment is terrifying as they are expected to keel over, while for me I was expected to fight so much that I went from a sweet social butterfly to aggravated, testy, and alarmingly pessimistic for someone who’d all but started residency and whose approach was always mind-environment-diet-lifestyle first, the rest handled slowly and with a whole-body ideology. When I finally had a couple of procedures done, one hellishly painful as I was having nerves literally fried at high temps with electric currents straight onto the tissue along my spine, I toughened up a bit and recognized that since massage is frankly too costly to frequent, I needed to aggressively seek out insurance-covered ways of handling a body out of whack, compression and inflammation words that are linked to my shoulders like taut bike chains. One thing I found was that I needed a LOT of physical therapy but NOT the kind I’d had every time injured, and I needed a steady supply of osteopathic treatment if I wanted to keep walking, which I’m terrified to stop. PT that restored my long-fucked-up left shoulder’s range of motion, gives relief in my bursitis-flared hips (shoulders too), and helped my body heal quicker on its own=ultrasound heat… it goes far deeper than even soaking in a tub and the heat at that frequency stimulates cell production, breaks up scar tissue, and likewise sloughs away sickly pockets of fluid and inflamed angry blobs of screweduppance. I also have steroids (medrol) shot into me through iontophoresis (electric current via a gel patch coated in the medicine) which hurts way less than needles where I CAN have it (discovered it for my hand+jaw back when I played flute over 40hrs/week)… then something that has what I tend to think are the “good” science-based rarity and the “quackery” of “look I studied 10 weeks and am certified in something, mom” variety… The Cranial Academy is the only institute I know of that I trust the members of, mostly bc they’ve almost all done 8-10yrs of medical training BEFORE you count the various levels of mastery of “cranial osteopathy” where some docs work at the head/neck, some at the base of the spine, and some head to toe… I can’t EXPLAIN it despite knowing the head as well as anyone that graduated in my year, but when my arm is numb and my arm “snaps” when moving 180 degrees in any particular direction or when I come in with my foot feeling like there’s stabbing pain and a mountain of pressure that usually only diabetics get to regularly feel… or my lower back so knotted up I’m too nauseous to move… or migraines hit hard… about 95% of the time level 7 pain drops to 3 (I can only go under 3 on heavy IV drips of narcotics completely blanking out my body’s awareness of everything, and I’ll bear pain at 9 before I swap my still annoying and side-effect-laden medication regime)… and as long as I go every 2-2.5 weeks (every other Tuesday is how I stay okay), I’m genuinely okay and even if the day before I’m crying and can’t even sleep because pressure hurts everything and I’m so kinked up at my neck-blades/ribs that my head feels like someone’s yanking it around or has it in a vice grip… I go, even if I look like death, and simply say “fix me” or “save me” or put the areas in all caps, top 3 debilitators my standard, and leave feeling lighter, sometimes a little dizzy if my head’s had bad pressure (admittedly, when my neck&shoulders are REALLY at their worst, ie when I’ve been on a gadget like now, I’ll have to take a dose of sumatriptan-migraine meds-after I’m back in gear. My doc has been doing this since 1984 but still looks like he’s barely in his 40s… he’s east meets west and while a lot of what he does is, to me, magic (I was pretty crappy with orthopedic medicine, which I figure, beyond a basic first aid/emergency situation knowledge and knowing who to send ppl to, is fine since how many neurologists/mental health professionals are giving advice about bone setting?)… since he’s not in the “quackery” division (the ones who talk about moving cranial bones… which make the ones focused on balancing everything from nerve tension from muscle spasms/compression to flare ups of joint diseases to circulatory health (cold hands/feet stemming from other problems) and in general nervous system responses… it makes the good ones get a bad rap, hence me only going to the ones who have MD/DO degrees (dentists can, though, get training that helps with jaw/neck tension as a sort of complement to their main money maker that knocks necks and jaws out of whack for the sake of teeth!)… anyway, not knowing where you are–Melbourne or some other pathway–now, also not knowing how credentials compare and knowing that even two identically trained doctors will have used their brains drastically different ways when learning and in treating… it’s just a thought. That said, ultrasound heat is something that any PT and depending on where you life sometimes regular docs or chiros etc can do as long as they have the ~$1300 gadget (there are $30 ones sold but they are not going to be giving the medical grade treatment needed)… that is painless as long as they don’t hover over bone too much at 100%–so they “pulse” the frequency to prevent that, which I only experienced briefly once when treating my shoulder area and trying to get the connective tissue close to the neck taken care of–she just knocked it down a notch and voila (heat isn’t harmful but bones are super sensitive to any temp difference, even though on the skin it barely feels warm–science is amazing)… anyway, my therapist is a feline, a caregiver-friend paid by my insurance does all the cleaning for me and drives me around so I can focus on happiness not grunt work that knocks me out entirely (even just 8-10 hours a week is a HUGE difference–esp since she can do it all at a healthy human’s speed and efficiency, while for me, to vacuum-moving everything around especially-takes three sessions for half my apartment&my shoulders feel like they’re on fire while pins, needles, and numbness will shoot down my right arm and into my hand from that very dumb thing for me to still sometimes try like an idiot. Laundry also proved the sort of thing that someone else needs to take over). It was a huge deal for me to give in and let initially-a-stranger in my home, but in my case it was after a long hospitalization wherein I was sent home with walkers, a bedside toilet, and in-home physical therapy because I’d lost so much basic function from one really bad case of pneumonia that inevitably, as it was the viral kind, lurks around (it was a strain the pneumo-vaccine doesn’t take care of, so goes my luck with a slow-forming, long-lasting kind)… but when I’m sniffly, a cat is in my face chattering, and somehow I finally returned to someone who isn’t always faking it when smiling at people–and because I found the right assortment of practitioners–my primary, my rheumy, my ortho, my endo, my PT rockstar, my osteopath “physiatrist” with the Cranial Academy “stuff,” the nerve fryers in the pain clinic (next door to the magic man)–and walking INTO a pain clinic took a LOT of nerve, believe me, BUT it turned out I had to do the least convincing there and was given the most options… (PS aquatic therapy is also something that helped me quite a bit with stability, balance, strength/mobility issues initially; now PT is less restorative and more maintenance of chronic crap, but it is phenomenal how well it can work when the PT–and I’ve had the best and worst of the bunch–is really solid–here they’re doctors now, not master’s degree in “2 yrs past basic biology degree” holders, which is reassuring. I don’t buy into the everyone must be a doctor of something tripe but if someone’s treating my body as my practitioner, I refuse, urgent care for dehydration or similar stuff aside, to go to a physician’s assistant etc. I just can’t let someone with the basic bio plus 1 year think they can prescribe me ANYTHING, let alone “just prescribe anything” ie a single vs all things both scary–even antibiotics are too complex with so many contraindications and reactions that I trust the super nose of my cat to sniff out good+bad than a human who barely passed a bachelor’s degree then did a year’s worth of basic training, which to me shouts “there’s a paramedic to take you there safely” not “there’s the ER doc to drug me up and handle things that specialists have taken years at a time to piece together.”
Oh, and I, too, read all your post. I’m glad that despite mountains of morphine and literal years in hospitals in the last decade, I somehow never forget your website/blog names.
Whether this long long winded comment is welcome, I dunno… I just hope that you keep an increasing % of happy, fulfilled times, even if you end up like me with a schedule of down days to do nothing but lay around and heal, cat therapist at hand to purr into my whole being despite her tiny tiny god self. I just hope, pray, every day, that she stays healthy and happy… since she’s an old lady now, I’m ever-worried, but I just cuddle up and adore her, hoping it’s good for her health, too… Oh, and one thing I recommend watching: Korean series “Imaginary Cat” (8 half hour episodes… a quick google of “Imaginary Cat Korean drama” will bring you a host of sites to see it on). It’ll make your insides as fuzzy as Dicey’s outermost fluff and maybe make you cry for a little bit if you’re as wimpy as me on that front.
Hey, it’s been a long time. I am sorry you have been through so much but grateful for the tips, I shall definitely explore that.
How old is your bundle of fluff now? I remember her looking beautiful. 🙂
Oh and by the way, my situation is looking far more hopeful and positive than when I wrote this in large due to an incredible new physio who is an expert on my syndrome. I simply haven’t had a chance to write about how well things are going because I’ve been busy with things going well!