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.