The Disability Tango

There are two sides to Sarah. No, this is not a declaration of multiplicity, rather a tension that I live with as person with a disability. One side of me is my potential. The talent and skills I have, my character strengths, experience, learning, everything I bring to my life that is an asset. Another side of me is my limitations. These are my illnesses, harm left by a history of chronic trauma, character weaknesses, things I struggle with. Something I’ve noticed that constantly frustrates me is that often people can see and relate to only one of these sides at a time. This results in a really unbalanced perception of who I am and often, a really unhelpful approach in relating to me.

Those who perceive only my potential often relate to me with frustration. A lot of pressure characterises these interactions. These people can see where I could go, and think that I am holding myself back or just need some encouragement to get there. They simply cannot conceive of my limitations, how real and binding they are. They push me to get into higher education, to write books, travel, give more talks, do more. They can’t see that I am already at my limit, doing as much as I can, as fast as I can. The effort it is taking to manage the cultural divides, to walk the world of community services when I am, at heart, a strange poet creature, the freak factor. The effort it is taking to disguise and contain the harm left by chronic trauma and abuse. I have had a personal goal not to cry at work, I don’t think I’ve ever made it more than three weeks without falling apart. So many triggers, coping with the bad days, trying to fit in, protect my credibility, look normal, contain my distress, not show the scars, do enough things that feed and nourish me so that I can handle the things that exhaust and deplete me. I am always at maximum output, because I have very big dreams and I have started a long way behind. It is very difficult for someone to come from where I have been and get to where I want to go.

So I work incredibly hard, and I live my life on the edge of a catastrophe curve, way out of my comfort zone, because that is where the change and growth happens. The level of pressure I put myself under is ridiculous and destructive, and the drivenness I live with is dangerously destabilising. Every strength run to excess becomes a weakness. My drivenness has got me through and kept me going when the world burnt down to the ground, but it is also volatile and costly and needs careful handling. But, and this is the important bit – it is still an asset, and it is a part of who I am now – I can no more get rid of it than you would pluck out your eye. I live with it and I try to live with it well. I will get better at it.

On the other hand, those who perceive only my limitations react to me with anxiety. Our conversations are frustrating because their reaction to every speed wobble is to tell me to slow down. Take on less, do less, cancel projects, rest more. What they don’t perceive is that when I was doing less, when I had almost nothing to occupy my time and no projects to pour my heart out into, I was not content. I was profoundly miserable. I need a sense of meaning in my life. I need projects to mull over, I need intellectual stimulation, I need things to do. I describe this to my friends using a dog analogy – my brain is like a dog, one of those really big, clumsy, active dogs. If it gets bored, it starts chewing on the furniture, digging up the garden, and inventing amusing games where it tears all the orange coloured clothes off the washing line because the neighbour rode his bike this morning and left the car behind. I need to keep it busy or it keeps me busy with amusingly intricate symptoms of mental illness, where I find myself re-categorising my freezer contents or developing new and interesting tics. Down that road, peace and harmony do not lie. Doing less is rarely the answer for me, and I feel incredibly frustrated by how often people want to slow me down – with the best of intentions! Want to send me back to bed, have me content living on my pension, resting comfortably within my limitations, pushing nothing, risking nothing, trying nothing, and never finding out just what I really can achieve. It’s stifling, patronising, and phenomenally dangerous.

Sometimes I fall apart because of things that would make anyone fall apart – I get sick, life crashes, pets die. It wouldn’t matter if I had spent the previous month working on my tan instead, these things would still bowl me over. They are nothing to do with my hard work or lifestyle. Sometimes, it’s true, I crash and burn because I’ve pushed things too hard. You know what? It’s MY life! I’m allowed to! If I accept that the occasional crash is the price I pay for pushing myself hard into recovery and growth and learning, then I’m allowed to pay it. My choice. I’m the one who lands in bed with headaches and joint pain and hallucinations, and I know this isn’t neat and tidy, but growth isn’t. It’s messy and strange and you learn on the fly. The thing is too, this isn’t my first rodeo. I’ve been really damn sick. I’ve been so severely dissociative that I’m blind and cannot feel touch. I’ve been so disabled by pain and fatigue that I’ve been in a wheelchair. I have learned the roller-coaster of chronic relapse because I pack a months worth of longing and dreams into the one good day I get and wind up in bed for weeks afterwards. I’ve been here, I’ve been on this carousel a lot. I’ve learned a lot. I’m a lot more tuned in, a lot more caring of myself, and a lot better than I was then. A day of pain and headaches as pay off for a week of accomplishments? You’ve got to be kidding, I used to pay a fortnight of agony for one trip to the doctor where I couldn’t get a close enough park. I am used to paying very high prices for the opportunity to live, walk places, be able to think clearly enough to read. This is nothing. And I have lost years of my life, I cannot wait any longer. Carpe diem quam minimum credula postero. Memento mori.

Health for me has been a complex balancing act, I’ve had to learn not to push the good days too far, setting myself back. I’ve had to learn that emotional stress costs me in illness, and that self care is not self indulgence. I’ve had to learn that intellectually understanding my trauma history in no way reduces it’s impact. I’ve had to learn that taking on board the cultural reactions to me; as a crazy person, white trash homeless, a battered wife, or a disabled person – will kill my spirit. I’ve also had to learn that if I become afraid of pain I will never push my limits and never get any better. I live with a degree of incapacity, pain, and distress, in order to live. Trading off painlessness and stillness for not accomplishing any of my dreams is a fraud.

The people who relate to me best are those who see both sides of me, my potential and my limitations. They don’t try to stop me working the way I work, they try to support me. Even if at times I drive them nuts, worry them silly, or get really snappy when they try to advise me. I’ve been alone an awful lot, I’m not used to community yet. I’m used to only relying on myself, and some days politely telling a well intentioned person to hang on to their advice because I don’t want it is stretching my patience.

What’s helpful is when people show me more efficient ways to do what I’m trying to do, and get it when sometimes options that seem easy and obvious to them are not workable for me. Some days I take the stairs despite the joint pain, because the PTSD is too bad to handle the lift. Almost all of my limitations are invisible, but I can tell you from inside here that there is always a reason I am doing things ‘the long way round’. And some of us have to learn things the hard way, we are stubborn and independent and scared of burdening other people. Don’t forget that’s part of why you love us in the first place! And think for a second what we would be like with the limitations and disadvantages we face if we weren’t so pig-headed. Believe me, this is the better of the options. If all else fails, remember you’re not perfect either and people still love you. 🙂

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2 thoughts on “The Disability Tango

  1. Enforced rest IS boring. Did you ever have to stay inside being quiet because it was raining and parents were napping? 🙂 I like regenerating, to a point. Then I want to go and be active! My point is, there's nothing wrong with this. My point is, that everyone who says “Oh, I wish I had chronic fatigue too, I would love to take a year off work too” physically hurts me. Does it not make the slightest bit of sense that having spent years in bed, living out the life of a frail 90 year old that I might be jumping with zeal to get back my 20's? And full of the extra vim that those of us with episodic illnesses feel – that we don't know how long the good years are going to last, so we pack them in! There's so much I haven't had a chance to live, and believe me, everything you can enjoy from your living room armchair; the smell of cooking, the fall of sunlight through the curtains, the gentle patient art of needlework, the soft warmth of a cat, the song of a poem, I have explored, and spent years exploring. Why argue with me if I now want to climb mountains? 🙂

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  2. I think you confuse resting with being idle. The idea is to regenerate, to clear your mind, to get some sun, to quiet down the mind's incessant chatter. Not to sit around being bored.

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