Recently, I discovered that what I’ve been ascribing to personal failure (laziness) or a compounded consequence of my symptoms (fatigue+pain+brain fog) actually has its own name. It’s a discrete and commonly reported symptom that afflicts people like me with neuroimmune illnesses and disorders. It’s called lack of initiative, or lack of impetus. This is not initiative in the sense of having an idea to do something – those I have aplenty – but in terms of being able to instigate, to make a start, and then to persist at something, and (this is the crucial bit) this is irrespective of whether an activity is enjoyable and rewarding. My particular frustration is with writing. What used to be a hoot and a skoosh, with a solid day of writing being healthy-me’s idea of heaven, has become a source of self-criticism and punishment. Being unable to describe to my healthy pals the process by which I have been repeatedly failing to write consistently is horribly frustrating. I don’t have the words to describe how it feels to want to do something, but the messages being fired out from the brain just wither and fade before my hand can reach for a pencil. The very act of picking up that pencil takes on huge significance, absorbs my focus and attention, and subtly, slyly, energy leaks out of my battery as I try, by iron will alone, to make myself do it. Just pick the pencil up. Just pick up the pencil. Write a sentence down. Just one sentence. Then another one will come along. Just one sentence for today. Go on, you’ll be able to tick the ‘writing’ box in your bullet journal. People will stop nagging you. One sentence. OK, look, if that’s too much, just write down a word or two, just to capture what’s sitting perkily right smack bang in the middle of your mind’s eye. That phrase, that clever little bit of linguistic acrobatics. Go ooooon. You don’t need to do lots, no need to build a whole wall – just one brick. Hey, let’s call it a pebble, and tomorrow there will be another one. Tiny pebble. A totie, tiny, speck of a pebble. Reach over and pick up the pencil. And thus, an hour, then two can evaporate, and still the page stays blank. At least now I have a name for it, and I can feel less alone, knowing that this is symptom as solid and serious as the pain, the numbness, the muscles flickers.
So I’ve been thinking about writing this post for months, ever since I took the decision to use a wheelchair for purposes of perambulation (wait, is that an oxymoron?). In the first heady days after getting the NHS-prescribed electric wheelchair, I thought I really ought to record my initial thoughts, because becoming a wheelchair-user is surely one of life’s momentous tipping points, a transition has occurred, an identity transformed. This momentous moment ought to be analysed, recorded and shared with the world. Except I haven’t been able to so much as reach out for that pencil. Today, I have managed.
What’s it like to use a wheelchair? Completely terrifying for the first few days, then great fun. There it is in a nutshell. Well, that’s what it felt like the first week I used it… Starting from square one, as it were, people tended to respond to the news with worried sympathy. I had to explain that my decision to use the wheelchair was not due to a deterioration in my ability to walk; the fact is, that’s been consistently rubbish for almost five years now. My muscles feel weak and watery, my legs tire out within a few minutes, I suffer from dizziness when I move my head around in order to map my location on the street, and for a reason I don’t fully understand, walking and standing combined seems to consume vast quantities of energy. I frequently got home in a semi collapsed state, needing assistance to get onto the bed to rest. It wasn’t great, as ways of living go. So I made a proactive decision, in consultation with my GP and the NHS physio who decides whether or not a chair is appropriate, that if I could reduce the distance I walked and stand up (and still) to as little time as possible, that might just allow me to use my energy on other, more life enhancing activities. Like, er, writing.
This has proved to be entirely the case. It’s a resounding success. I’m glad I didn’t write this post in the early weeks of using the chair, because it’s taken a while to really appreciate the impact it’s had on the state of my body. I do have more disposable energy – bearing in mind we’re starting from a pretty low point. Improvements that I appreciate include having an extra shower each week, putting clothes on a couple of days more often, and enjoying time sitting in my living room. It has also taken me places I really couldn’t go much before, like down to the chi chi cafes of Byres Road and the yarn heaven of my favourite wool/cake shop with something approaching regularity.
It’s not all brilliant, of course. And a few more unpleasant incidents have deepened my appreciation of what it’s like to live as a disabled person in our society. You really do have to have a good measure of self possession to use a wheelchair. People will look at you, and they will look at you differently. That can’t be denied. It took a little while to get used to this, and it was during one particularly uncomfortable bus journey I cracked what was going on. The reason buses can be awkward is that you a) hold up the journey for everyone else, as the driver gets out and folds down the ramp, b) there’s the potential to really screw up some poor mother’s day, by having her and her offspring chucked off as wheelchairs take precedence (by legal decree, it turns out), and c) you have to reverse something the size and dimensions of a washing machine into what feels like a shoe box. Facing backwards. Looking at everyone. It is stomach-knotting in ways you can only imagine. So there I was, doing a twenty-six-point shuffle to squeeze the perfectly bog standard NHS-issue wheelchair into a space FirstBus designed using their imagination but no tape measure, and all without cracking the corns of other mobility-challenged souls in the disabled and elderly seats. I was plum-red and puffing by the time I could secure the brakes and we could all get on our way. It’s hard not to catch anyone’s eye when you’re the only person looking in the opposite direction towards an audience, and I noted with a skimming glance that at least four or five people were gazing at me (that was an improvement from my original estimate of everyone). Oh lawks. My idea of hell, generally. But then I thought, well, so what? People are looking at me because I look different – and I am different. In wealthy, healthy western countries, it’s not that usual to see someone of barely 50 in a wheelchair. Sickness and frailty are for old age, not the middle years. Not only that, it’s normal human behaviour to look at and assess anything different. People look at other people *all the time*, and for a million reasons. Maybe they were feeling pity for me. Maybe they were wondering what had happened to me to ‘put me in’ a wheelchair. Maybe they were cursing me for slowing their journey down. But actually, maybe they were wondering what they were going to have for dinner, or if the dog would make do with a quick once-round-the-block instead of the park in the rain, or what happened on Eastenders last night. Lesson number one: as in life B.C (Before (medical) Catastrophe), what people are thinking isn’t and shouldn’t be my concern.
While it’s possible to see this as quite an interesting anthropological moment, and maybe it would make a neat dinner table discussion, don’t ever get me started on the state of Glasgow’s pavements. Lesson number two: the state of the nation’s public highways and byways really is as bad as my Mum used to complain about. I am Dr Furious of Nutstown on this one. Lowered kerbstones are supposed to make life easier for a fairly large proportion of the population, including people on wheels, but also parents with little children in large buggies, and elderly people who aren’t as nimble as they once were. Glasgow City Council’s idea of a ‘lowered’ kerb is anything that is five millimetres out of kilter with its neighbour, and even if that dip is at one end only. I have a special extra foot thing on my chariot which makes mounting kerbs marginally more effective and less life threatening should they be insufficiently lowered, and I’ve still been left dangling off a footpath, three wheels on, one critical back wheel off, feeling the backdraft of cars as they whoosh by – seemingly oblivious – on the busy road behind me. It is so dangerous to make the fifteen minute zip to Asda by the quickest on-foot route, that I’ve got to follow a crazy zig zagging meander to find the safest kerbs for me to drop down from. At the end of my own street, the kerb is so badly lowered, I now travel down the parallel street below us and cut up a lane onto my home road, doubling back up to my flat. I add an entire length of a street onto my journey, just so that I know I can keep myself safe. This is especially important, because I’ve been the target for verbal abuse by men in a white van for having the audacity to set wheel on tarmac. It’s a crazy world out there, and I don’t feel as safe any more. It’s only a few weeks into wintertime, and I feel nervous and jumpy travelling about in the dark in my wheelchair too. Some drivers – who I am sure would be very nice if they found themselves sitting beside me for dinner – turn into feral, testosterone spraying grease-monkeys when they turn the ignition on. I am fair game for catching the flak of their workday stress apparently. I feel vulnerable, much more so than ever before. It’s a learning curve, but my instinct to smile and raise a middle digit to my antagonists is curbed, because I know if they wanted to scare and intimidate me more, then they could do so, very easily.
Finally, the big one that many of my friends in wheelchairs have to wrap their heads around: how to handle the reactions of people around you when you stand up. Lesson number three. Yes, yes, I cannot lie – I can actually still stand up. I can even walk for brief spells, though not without discomfort or payback, and with the aid of a walking stick. But I – along with around 80% of fellow wheelchair users – can stand up. It’s one of the most insidious myths about disability, that there are no degrees of impairment. You are paralysed, or you can walk. In the real world, only a small proportion of disabled people have entirely lost the use of their legs. For many, myself included, a wheelchair does two things: it reduces my overall pain load; and it expands the horizons of my world, offering an excellent tool to preserve independence as much as possible. It’s a piece of kit, in the same way as a perching stool, splints for weak muscles, and a walking stick is. It enables the completion of an activity that would otherwise be difficult or even impossible. It’s why the title of this uses inverted commas. My wheelchair is not a symbol of my disability; it’s an emblem of my liberation. I use a wheelchair; I am most definitely not in a wheelchair. I should say, however, that from what I hear and read (and gone through myself), there is a process when someone acquires a disease or condition that changes, often shrinks, their physical possibilities and life choices. It involves fear, longing, sadness and not a small measure of mourning, but also acceptance. I think everyone has a different moment in their process when difficult emotions start to ease up, and acceptance and peace with this new and unexpected direction in life kicks in. For me, the biggest mental leap was getting a mobility scooter. I had started using a walking stick with little thought, but I really chewed over every aspect of what using a scooter meant, how it would feel, what it said about my life, my illness. When it came to the wheelchair, I made an almost emotion-free decision. It was practical, it was sensible, and I was building up a few aspirations for getting out and about. I was frustrated at not being able to do very pedestrian (gettit?!) things, like nip out for a pint of milk. I realised the thing that was holding me back was really two things: my crap legs. Replace with four wheels and taaa-daaaaa, problem solved! Still, until you or someone close to you faces these choices, you don’t think about any of the issues I’ve mentioned here much. You don’t have to. And that’s fine, to a degree. Where it starts to become un-fine is where people allow social (and political) myth-making replace an accuracy much better acquired by asking people who know the truth – the sick and disabled – about their lives and experiences. So I’ve twice encountered evident judgement from other people, both times in a supermarket, and both times because I stood up. Once to reach for a bunch of reduced flowers in a bucket dangling at about lampost height (anything for a bargain); and again after I had put my items through a self service check out, then stood up to put them into my wheelchair back-pack (the other option is to twist my buggered left arm around to try to drop things one by one into it then pull the zip shut without stitching my finger into it – nasty, believe me). The woman behind me tutted so loud that I couldn’t help but look up at her. I didn’t even realise she was directing her ire at me until I saw the crossed arms and mouth set in stone, a glint of dislike in her eye. And I thought, quite frankly – fuck you. Fuck you and your ignorance, and your self righteousness, and your opinion based on bigotry, and your lack of manners and simple humanity. So I stopped what I was doing and I stared right back into her eyes. I stared at her until she was the one turning pink, and she had to look away. Only when she did, I got on with – slowly and carefully – packing my shopping away. I hope she remembers that experience. I’m also a kind enough person to hope she never finds herself in the position of having to deal with people like her, and the way she made me feel that day.
So much of what we know about disability, we glean from second, third, fortieth hand sources. We read about it online and in the newspapers. We cry at sad stories of children born without limbs, brave soldiers blown up with bombs, young mothers cut down by savage and incurable diseases. Yet, for a significant minority, those stories disappear when we see a disabled person behaving in a way that doesn’t fit our personal template of ‘disabled’, whether it’s someone getting out of their chair to pick up a jar on a high shelf, or tanking a bottle of wine in a pub, or even raising two fingers to van drivers. That’s disgusting. That’s what that woman’s face said to me that day. You’re disgusting, having a wheelchair that you obviously don’t need. The irony is that I’m an open and approachable person. If you wonder – ask. Let me explain to you how this life, how this body, works. Because I know it from the perspective of deep understanding and real life experience. The overwhelming majority of people I’ve encountered have been kind and compassionate and keen to help, and I’m glad I’ve encountered so many around my neighbourhood who have met me where I am, not where they think I ought to be. So this is the final insight I’ve gained recently: that woman was disgusted because I’m not doing ‘disabled’ as she wanted me to do it, or felt I should be doing it. And too buggering right – I’m doing it as me. Want to know more? Just ask.