For too long, my wheelchair reminded me of what I’d lost. Then I saw it as liberating

When my rheumatoid arthritis became more aggressive, I clung to the idea of still being a ‘walking person’. Letting go of that gave me more freedom than I could have imagined. It started like any normal day – or normal for us, at least. My partner, Stewart, helped me out of bed and on to the wheeled office chair I kept next to it. Then I propelled myself to the top of the stairs before leaning precariously on my crutches as I made my way down, slowly and dangerously, with lots of swearing at the pain (I find it helps). Then, on the way out to the car, I missed my footing and fell.

Not for the first time, Stewart was caught between concern and frustration. Wasn’t it time, he asked, for me to consider using a wheelchair? Once again, I rejected the suggestion. I was diagnosed with rheumatoid arthritis in my 20s, but, after an aggressive flare-up, it disappeared. However, in 2005, when I was 37, it returned, worse than before. Over the following years, movement and mobility became more and more painful and challenging, but I was determined to stay on my feet – to still be a “walking person”. I clung to an illusion of mobility and the person I had always been.

But, slowly, walking unaided became impossible. I used crutches and leaned on them so heavily that I developed lasting problems with my elbows and shoulders, as well as significant pain and exhaustion. Eventually, the only walking I did was from the car to my desk at school, where I worked as an A-level English teacher, and back again.

The morning after my fall, the truth of what Stewart had been saying hit me: trying to stay on my feet was disabling me further. My perspective shifted and I admitted what felt, at the time, like defeat. At 46, I decided to get a wheelchair. The moment I saw it, I hated the wheelchair. I hated its clinical, clunky appearance and, in an unexpected blow to my vanity, I hated how I looked in it. Suddenly, having been tall (5ft 10in), here I was, sitting at the height of most people’s crotches. My hips and bum began to widen from sitting down all the time and I gained weight as a result of my lack of movement. I felt deeply unattractive and unsexy. Rheumatoid arthritis twisted and changed my body – my arms no longer straightened, my hands became severely disfigured, my knees locked at 90 degrees. Every single joint had become stiff and painful, meaning that I moved in a way that looked unnatural, too.

The first outing Stewart and I made with me in my wheelchair was, to my surprise, quite wonderful. We went to Hay-on-Wye, where I went from bookshop to bookshop without painfully leaning on crutches; I sat in a cafe without worrying about how I was going to stand up afterwards. In short, it felt like freedom. Initially, I was hopeless at manoeuvring the chair, careering down shallow ramps and into walls, unable to navigate kerbs. But, gradually, I developed the skills I needed to go out with my children, or go on holiday, and started doing both much more than I was able to during the years of trying to stay on my feet.

Being more visibly disabled has had other silver linings, too. People are kind. Although not every disabled person appreciates being offered help, I am never offended and it often feels as if I am seeing the very best of human nature. It makes me think of Danusha Laméris’s poem Small Kindnesses, in which she calls these moments “the true dwelling of the holy, these / fleeting temples we make together”.

Everything I do still takes an age – putting on makeup, tidying my desk, making something simple to eat – but I have developed a dogged determination to complete even simple tasks, a spirit of perseverance that I may never have otherwise known. I have become more committed, more focused on the things that matter in my life: my family and friends, writing and getting out into the countryside.

During the early days, when I hated the wheelchair, I would look at it by my bed and see it as a stark reminder of what I had lost. I would feel terrible grief and anger. Now, when I look at it, I see the imprint of myself on it, how its shape has adapted to me, and mine to it, and I feel a greater acceptance: it is a part of me now. I give its form function, and it gives me a life I thought I had lost. We live in a sort of symbiosis.

Of course, I long to walk and dance and, as in a recurring dream I have, to run, but I am learning to live with my disability. Using a wheelchair can be challenging, but it has also proved hugely liberating; together, it feels as if we are on the brink of a whole new adventure.

The Fisherman’s Gift by Julia Kelly is published on 6 March (Harvill Secker, £16.99). To support the Guardian and the Observer, order your copy from guardianbookshop.com. Delivery charges may apply. Do you have an opinion on the issues raised in this article? If you would like to submit a response of up to 300 words by email to be considered for publication in our letters section, please click here.