Sometimes, people make thoughtless comments which affect me somewhat unexpectedly. I'm pretty thick-skinned now, so i'm not running off and crying about it. While i know there's no malice in these people's intent, i find myself going over these statements in my head. Pain has been playing havoc with my sleep lately; so going over shit in my head while i'm trying not to give attention to Pain isn't really helping me sleep.
I've been feeling very strong in who I am. I've found my voice again, reaffirmed my power. I accept my disability more than I ever did before: it's not that I like being disabled, but what's the point of wishing for something that won't ever be possible? I made friends with Pain, Disability is just another member of this odd social group of mine. Pain is the whining, whinging, screeching complainer of the group that never shuts the hell up; Disability is the pain in the arse who always needs accommodating. It is like the one who can't just order something off a menu, but insists on ingredients being omitted, others being added; food prepared in a certain and annoyingly exact way and sent back if it's not. Disability is the Sheldon of my group! I hate being that one, I hate drawing this type of attention. The only attention I want is for that which I worked hard, or for the fun and lighthearted things in life. I wish my disability was my secret: invisible, hidden - my own business, not for others to see. Because it is not, all I can do is shield myself behind brashness and laughs; deflecting my own deep shame and embarrassment, as well as unknowingly offensive comments from well-meaning people.
Disability is the one who forces me to hold my bladder and nearly wet myself, simply because I cannot find an accessible toilet. Disability is the one who locks me out of social gatherings upon finding stairs, or realising there isn't enough room for me to get around with my wheels because the doorways aren't wide enough or tables are too close together. Not to mention the inevitable bikes everywhere here in Amsterdam, clogging up footpaths, or parking my batmobiel in so I cannot get out (and I can't move the bike either!). Disability makes me vulnerable, fearful I may not be able to get myself away from danger; trapped with no way out and waiting for a rescuer that may not even come.
I have compensated for the losses in my body fairly well, on the most part. Old hobbies transformed into new hobbies, wheeled mobility and a toolbox of training and adaptability. I certainly have much more today than I've had in the past, both in the practical sense as well as emotionally. I actually feel much less disabled now than I was before. I can leave my house, socialise more, participate in the real world again. I cannot stress the importance of all of those things enough, even for someone like me who is comfortable in their own company. Especially for us loners, who may not recognise their own social isolation as easily as others perhaps could. And it is very easy to slip deeper and deeper into this prison. A prisoner in my own body, held hostage by my Pain, life without parole. Why add solitary confinement to all that?
In the past few weeks, I've heard variations of a notion that bugs me quite a bit. When it's said to me, I am so taken aback I don't really know what to do with it. I guess I just brush past it; not wanting to draw attention to it, nor make a scene with my social model of disability activism! Maybe it's not the best response, perhaps I should use that moment to gently explain why it isn't really cool to say stuff like that to people who have a disability. There's a time and place for that sort of thing, I'm not going to jump on it every time something a bit thoughtless is said. I've likely said a lot of unintentionally offensive stuff to others myself! And the politically correct police can take too much fun out of life, bugger that! I don't want people to feel they're walking on eggshells around me or anyone else, scared I might take offense at something they say. So it's a tricky balance: when to gently correct assumptions, and when to just let it pass and be forgotten.
The assumption? Work. How lucky I am to not be able to work, having all my free time and all.... I know it is just a general statement, I get it! But it bugs me because I wish I could work, more than I wish I could walk again. That I miss going to work, going to a place every day that values my contribution and utilises my intellect and skills. A place where I can be someone else, have innane chats about boring stuff, wearing a personality uniform that I can shed when I get home. More importantly, I miss having an income, being financially independent.
I got my first job at mcdonalds when I was 15, I was so proud! After school and weekends, it was great! Independence, responsibility - loved it! I worked in bars and pubs, in a printing mailhouse. Honest and physical work. Then, I got injured at work, and it all changed. Suddenly, options were closing and what I had taken pride in was taken away. I ended up in a whole new direction, all the workers comp fighting, then working in a trade union ignited something in me. I went to uni to get my law degree, even though workers comp didn't approve and I still had to jobseek for jobs that didn't exist for me within their restrictions. After some work experience stuff, I ended up getting a part-time position as an advocate, working in a tribunal. Initially I loved it; I was idealistic and wanting to help people find their own power, to represent them or explain to them how to represent themselves. To educate them in their own rights, for all the times I had to figure it out on my own without guidance. But idealism doesn't always work in the real world, with desperate people whom the odds are stacked against. I got frustrated being blamed when I'd done my best, by people who didn't listen. I got frustrated when I couldn't help someone or when the rules weren't followed. The politics, the games... it's not paranoia when they're really out to get you, and I felt I was fighting too many enemies, not to mention the enemy CRPS.
That all played into why I left everything to travel. Despite doing all this, I still felt terribly disabled. I was disabled by the workers compensation system, that demanded I jobseek under ridiculous restrictions for jobs that didn't exist, while not even paying me on time when I had done everything by the book. I was disabled by not being able to afford to pay upfront for my non-PBS (pharmaceutical benefits scheme) medications that I waited for months to be reimbursed, and being refused a specialist that may have helped me in the early years. I was disabled by being forced to jobseek and study at the same time, because I was studying for a higher level than the job I was injured on. I could go on and on, but needless to say, that system disables people more than the injury does, then punishes them even when they are following the rules to the letter.
My travels brought out a whole new me, one who was strong, independent and could find solutions to any problem I encountered. No one really knew I couldn't use my arm properly unless I told them, or if I had one of those days where I couldn't hide Pain any longer. The kindness and care that people, many of whom I had just met, showed me during those terrible moments was that they didn't think any less of me because of my disability. Who sat by me, soothingly reassuring me as I lay in a ball crying in pain. I probably frightened them. They didn't really know me that well, but in witnessing those horrible moments with me, they saw a side of me I fiercely kept hidden. They saw my vulnerability, my deepest secret from the world; they saw my strength in overcoming it.
When I began my life in Amsterdam, after months of backpacking, I fell I to a job which I loved. I was working with scientific publishing. It was something made for me, my interests and I was good at it. I also got access to publications to do with pain, the proper peer-reviewed research into pain. I started to realise just how privileged I was in my pain rehab with "The Chronic Pain Group" (now "Chronic Pain Australia") and Dr Coralie Wales. All that I had learned many years prior, was only now coming into the forefront. Revolutionary, understanding the neurological mechanisms in chronic pain lessens the fear in pain and enables more detachment. I worked there for 3 years, circumstances changed and I realised that I wanted to get my dutch language diploma and retrain in a completely dutch-speaking job.
I love languages, so I was glad to finally learn how to properly express myself and work within another language. I ended up retraining as a dental assistant. As a child, I was fascinated by dentistry, thought about studying it too. But now, here I was training as a dutch dental assistant. It was something I felt was made for me. The work with my hands was difficult at times, but yet I was also at an advantage by being left-hand dominant. What made me an even better dental assistant was my understanding of pain. It was incredibly rewarding to be in a job where someone would come to is in pain, and we were able to fix it, to relieve it. For someone like me, to see that pain could be cured gave me hope unlike I had ever felt before. It was truly special. It was also something that was taken away by CRPS, as it was slowly spreading to my legs. A small fall on the ice only accelerated what was already happening. CRPS has its own mind, it is out of my control. All I can control is how I react to it.
Since that time, I haven't been able to work. Not by my choice, but by circumstance. I am lucky to have a partner who supports me, as I do not receive any welfare or assistance aside from my scootmobiel and stairlift. It doesn't mean I spend my time chilling out, watching soaps and all that. I help with administration of my partner's business. I also swim and do my own sort of physio and mirror box therapy, keeping my body as active as possible with my limitations. I paint and sketch, exploring my creativity while keeping my brain connected to my CRPS-affected arm. And to be honest, staying alive and healthy were top priority over the past 2 difficult years with my asthma!
I know people mean no offense when they say stuff like that. I know that everyone has days where they dislike their job, and wish they could be free to do their own thing. It's not really offense I feel; it's a little bit of jealousy too, if I'm honest. I feel jealous about people who can work, who aren't judged for being disabled. Who don't have to think of all the fore planning, preparations, alterations. I am a bit jealous of the normality, I wish I were normal too. We all wish for what we don't have, the grass is always greener on the other side. I know it's not personal, and I just let these comments pass. It is interesting that by writing this post, I have come to conclusions about my feelings. In writing these words, I realise what it is about it that bothers me. Much like understanding pain, understanding why I feel these emotions makes it much easier to let it go. I don't need to be a social model activist all the time to feel strong - I am already! By living my truth, I am being my own activist; one that is perhaps more convincing than one who shouts it out loud every time someone carelessly utters a statement. We all have our truths, we all want what others have. But no matter what, I am truly grateful in all that I have, in all that I know. I am one of the fortunate ones who knows who I truly am.
As Polonius said to Laertes before he set off to Paris "This above all: to thine own self be true." [Hamlet: act 1, scene 3, line 78] Good advice, though don't be a hypocrite like Polonius!