Disabled time
At the weekend, some friends and I were laughing over lunch when I handed one my camera so she could start snapping pictures for my blog. One of my faves is the image for this post. We were laughing at the ridiculousness of doing a spontaneous photoshoot over a pub table, while a live band played loudly nearby, when I asked my fabulous photographer friend about her job. She told me that she recently completed her second year in her current role.
We looked at each other a little incredulously at the time that had passed. We both shook our heads. It did not feel like two years.
But we weren’t reacting to the same realisation. My friend said that it didn’t feel like any time had passed and she was amazed that it has been two years already. I, on the other hand, was amazed that it had only been two years. It felt to me like at least 5 had passed. We asked our other friends around the table and realised that I was the clear outlier. To everyone else the time had moved disturbingly fast. To me, the world had turned at a glacial pace.
Disabled people sometimes experience what I think of as ‘disabled time’. In general, most people experience very little change in their day-to-day lives, unless they move house or start a new job, for example. During big life events, time slows down a beat until familiarity once more picks up the pace. For disabled people, our day-to-day experience constantly changes in remarkable, often dramatic ways. With such massive, frequent changes, life can never really become too familiar.
Two years ago I was recovering from my last relapse. I went from running almost 5k to being unable to walk more than a few hundred metres. My bladder was uncooperative to the point of belligerence. The relapse attacked my brainstem. I had huge trouble sleeping. I was fatigued frequently and severely. So much so that for the first time I had to cancel a presentation at a live event. I became deeply anxious about the future.
My life is virtually unrecognisable from two years ago. I started using a wheelchair and have been through two already. I’ve gone from being unable to push more than a few feet to pushing 5k. I don’t fatigue anywhere near as easily. I can manage full work days and still have energy to spend time with friends, or to podcast, or to blog. I don’t even pee the same way. I went from being unable to empty fully at all, to learning to intermittently self-catheterise, to being able to almost thoughtlessly pop open a catheter whenever I need to go.
Today I met a friend at a cafe in the centre of Southampton after attending meetings all morning. I tucked my dress underneath my legs and wheeled myself through town on my wheelchair, the Rocinante. We got smoothies, and laughed at how disappointed we are with the Labour government. We had fun putting the world to rights. I wasn’t fatigued. I was energised, laughing, and enjoying myself. On my way back to the car I wheeled myself into a toilet to intermittently self-catheterise. Then I wheeled up steep hills and up steep curbs in full control of the chair, with energy and purpose. I didn’t fall once.
Tomorrow I could relapse.
The changes my disability imposes on my life both slow my experience of it and motivate me to cherish it. While familiarity means that days and activities pass almost casually to most people, to disabled people the simplest things can no longer be taken for granted. I don’t know for how long I’ll have the fine motor dexterity to be able to do my makeup or to self-catheterise fully independently. I don’t know for how long I’ll have the arm strength to push the chair. I don’t know when pain and fatigue might once again take me from the activities I love. The simplest joys are ones disabled people treasure. We live inside the heartbeats of peace. Part of our fight to survive is a fight to be fully alive to these precious moments.
I saw myself in a couple of passing shop windows as I was flying through town in my wheelchair. As fast as a runner, the wind in my hair, my headphones blaring music, my huge sunglasses shielding me from the spring sunshine. The woman I saw in the windows was someone I didn’t at all recognise from two years ago. This woman was confident, strong, fiercely independent. She wasn’t anxious at all. She beamed.
Today, as I wheeled through the park at speed in the sunshine to meet a friend, today lasted a lifetime…