How do you cope with disability?
My experience of losing the use of my dominant arm in 1990 was one of ‘just get on with it’. I was hospitalized for around a month as a result of a motorbike accident that pulled the nerves from my arm out of the spinal cord, broke my jaws in so many places the upper and lower had to wired together for 8 weeks, and numerous other exciting injuries. Being looked after in the orthopaedic ward of Dunedin Public Hospital meant I had a shared room with 3 other guys. Due to their various conditions, young as I was at 17, I could still see that there were othersmuch worse off.
One bloke had been in a wheelchair for so many years that his internal organs were starting to fail. He was however, a fuckin crackup that always kept everyone in good spirits. Another bloke had broken his neck. This poor bastard had to lay in bed 24 rs a day in a god-awful brace system, with regular turning of this and his bed to try and limit bed sores. Fun stuff!
I was introduced to another one-armed bloke, Charlie. He also had the same sort of accident years earlier, so was a great source of inspiration for me. He showed me how he adapted to driving a car one-armed, and also a motorbike. It probably sounds quite difficult, and it was at first, but I eventually got a little two-stroke motorbike that I used to zip around on one-armed much to the surprise of other motorists.
- there’s always someone worse off.
Conventional wisdom about unexpected disability is that the patient goes through a number of stages, grief/anger etc. As I wasn’t reacting conventionally the hospital had me see a psychologist to chat about things. We chatted for half an hour and I got the tick of approval, ‘nothing to see here, carry on.’ So anyway there I was, almost 18years of age and having to learn to use my other arm/hand to do everything. My perspective was embrace the challenge & overcome. (with a healthy dose of ‘fuck it’) I had an obvious physical disability, but a nut so obvious struggle with pain – which was, and still is, far worse. You may have heard of phantom pain, the pain or sensations that amputees have in their missing limb. I had, but I’d thought it was just tickles or funny sensations like it was still there. This myth is often perpetuated by patients themselves, who try and mask their struggle. For me it felt like my hand was being crushed in a vice, electrocuted in random spots and burnt also in random spots. Needless to say, this fuckin sucked. (Now, over 20 years later, my phantom pain has reduced, but replaced by chronic pain).
Part of my pain control plan involved attending an outpatient clinic at the hospital. This was one-on-one sessions with a specialist consultant physician in pain medicine. The biggest benefit I got from this experience was learning it was possible to change my attitude towards pain, even my perception of pain and the impact on me as a person. Of course any of these lessons learnt about pain could also apply towards disability, which is why I am mentioning this now.
I think I was petty lucky my reaction to the accident and subsequent disability was a very quick “sink or swim” response, and certainly don’t want to imply you are any less of a person if you react in a negative fashion. Ironically if you compare breaking an arm to losing one, it’s a hell of lot easier to accept the latter as you don’t have the natural inclination of wanting the healing period to hurry the fuck up.
So how can you change the way you feel towards something? As corny as it might seem, a good self-help book can change your life. My pain specialist eventually got interested in learning about psychology, the self, ego & all that. Until that point in my teenage years, I really had no interest in learning enough about myself to understand the way I am, or even attempt to shape it. I can only suggest this sort of idea can really make a difference, and if you are a typical tough-male who shrugs that shit off, at least give it a try and a genuine chance. Don’t be piss-weak and solve your trouble with alcohol or drugs as that path very quickly leads to ruin. (Mind you it must be said I did get a lot of effective relief from pain from smoking dope, but saving that story for another post)
- don’t believe everything you read on the Internet.
The Internet is great for research. You probably stumbled across this page from a search. There is probably a forum for every type of disability or condition possible. Just remember people can lean towards sharing their negative experiences and I’ve seen a few online communities that indirectly encouraged a ‘woe me’ attitude. Also, what works for me might be the opposite for you. I only have my experience, not necessarily answers.
You soon learn that life with a disability changes your attitude towards the little things in life that you used to find annoying. It might even be a significant enough life-changing event to sort your shit out, and put you on track for what you want out of life.
e.g. Car in front cut you off? Who gives a shit… life’s too short.
That is exactly how it worked for me, but I did have the experience of losing my Dad to cancer just 3 years later, so this only reinforced that life-track stuff for me. It definitely is a mixed blessing though, as I do notice my sympathy is almost completely non-existent for other people’s little gripe’s about their issues. This can have consequences for my social skills.