People who know me well will be aware that I don’t tend to pander too much to social convention or norms of expected behaviour (in some ways, at least). For years I have shunned the obligation of party bags; I am stubbornly committed to my adoration of cheesy 80s pop, especially Jason Donovan; I don’t understand the rituals surrounding proper eyebrow grooming that many of my female peers have embraced, and I proudly purchased a small, squat semi-detached bungalow at a time of life when many around me were upgrading to detached houses with open plan kitchens.
I try to embrace the mindset of “those who mind don’t matter and those who matter don’t mind“, surrounding myself with people who fit into the latter category as much as life allows. So I am perturbed by my reluctance to share my latest venture because, in truth, the thing that has thus far stopped me from doing so is the fear of what people might think and say, or not say.
Over recent months and weeks, my ability to walk short distances has diminished. I rarely venture out without a stick, unless it is straight from door to car and door again at the other end, or my husband is on hand to be, well, literally on hand. Trips to town, supermarkets and larger stores have become a matter of much debate, over whether I navigate the aisles via the shortest route possible or opt for a more leisurely browse, assisted by the borrowed wheelchairs available for loan at the customer service desk. My decision to use a chair is becoming a more frequent one, and this has led me to begin to come to terms with being a passive, if somewhat bossy, passenger. But it has also led me to consider how this might work in future, if the wheels are to become a regular feature of my pragmatic approach to moving around. It is important to me to not always be passive, to not only be a passenger.
A friend of mine, someone whose life has also been affected by MS, gave me sage advice some months ago. When I was telling her that I miss running, and no longer know what I can do to maintain the fitness and solitude that my (albeit irregular) running habit used to afford me, she told me, “Learn to use your wheelchair. Build up your fitness now, while you don’t need to wheel, so that you will be prepared if ever you have no choice”. I knew instinctively that she was right, and that I would eventually heed her words of wisdom and begin to take the first steps (pun intended!) towards becoming wheelchair competent, independently. But I also knew that I wasn’t yet ready for that. Not physically, and not mentally.
I put it to you that society’s perceptions of “people in wheelchairs” is that they are only in wheelchairs. And I say this based on the fact that my own perception was exactly this only a few years ago. It feels simply odd to be sitting in a chair for any distance that I would consider long haul (over a few hundred metres) and then to stand and walk, without any visible signs of difficulty save a slightly ataxic gait or a barely perceptible dragging of a foot. I feel like I am cheating, pretending; it feels a bit like I might have Munchausen’s syndrome; like I am seeking attention without any real justification or genuine symptom. I need to get past this, and one step(!) on that road is to just get past my own perceptions of other people’s perceptions and do what I know to be sensible, rational and even prudent – get in my wheelchair and practise.
So this is what I am beginning to do. Not unaccompanied – not yet; the tilts and tree-stump-bumps of my village’s footpaths (note: not “wheelpaths!”) are too unpredictable to go it entirely alone for now. Until I have familiarised myself with the nuances of what happens when you approach a left-leaning surface (the answer is that your left hand must push like crazy to counter the camber), I need someone I trust within grabbing distance to mitigate the effects of a road-ward slope towards an oncoming car. Or an unsuspecting pedestrian.
So those of you local to me might see me wheeling along the streets, red-faced, paused to stretch my aching arms, or rubbing my sore palms, or careering towards a kerb, or jubilantly arriving at the predetermined goal of the next tree or lamppost, receiving a congratulatory high-five from my daughter, chief cheerleader and head coach. You will perhaps do that head tilt when you ask if I am ok, with a slightly more pronounced high rising intonation implying a genuine enquiry into the reason for my sedentary state, without verbalising the question itself. The most well-informed of you might even ask me outright whether I am in the middle of a relapse, and how I am coping with my legs not working. To save us all the embarrassment, I declare myself In Training as a wheelchair user. No, it might not come to a point where I need it everyday. No, I am not being disrespectful to those for whom such a period of practise as choice was a luxury they were never granted, their decline being too sudden, too unseen, to allow them this gentle preparatory phase. But I am realising that the time is coming, however unpredictable in the speed of its approach, when I will want to be able to move myself independently over paths, through shops, around superstores, and I will no longer be able to rely on my legs to perform their one task of transporting me on command.
So my arms and I are making this slow transition. It is painful, physically, and it is hard psychologically, but mainly because of this damned idea in my head that I have no right to be doing it, not yet, not until I have to. The trouble is, my friends, that I fear by then it will be too late. So while I can, while I still can, I am pushing my wheelchair to the side of the road past the really awkward bit, over the too-pronounced kerb and onto the flattest, smoothest section of pavement between my house and the village shops, and taking it from there. If I see you, I will be sure to pause and wave. It will give my arms a chance to sneak a rest!