Brace Yourself

International Day of People with Disability

Today is international day for People with a Disability.  I had wanted to write something amazingly intelligent, uplifting and funny to celebrate the day. But the truth is, I’m not doing great right now.

Not working, my future, the future of the world, the state of politics etc. It’s all weighing heavily on me. I’m an overthinker at the best of times so, in difficult times, I’m my own worst enemy.

My disease, which has always affected my feet and legs the worst, is impacting my hands and fingers to a higher degree than in the past.

I do an exercise routine with an exercise physiologist every week. We finish up with seated boxing where I go through different combinations of jabs, hooks and uppercuts. Aiming for the pads in the exercise physiologist’s hands and hoping I don’t miss and punch her in the face. It’s great cardio, good for coordination and great stress relief.

This week, after my session, my right hand felt “silly”. When I overwork a muscle, it gets weak and tired and doesn’t respond properly. It’s best described as feeling like jelly – wobbly and all over the place. A bit like pins and needles when a limb goes numb, and you have to massage life back into it. Only, no amount of massaging revives this, just time and rest. My fingers weren’t responding properly, I had to really focus to make them work. It was a stark reminder of what may come. I’ve mostly come to terms with the prospect that I may lose the ability to walk. I do what I can to prolong my mobility – the more I remain active, the longer I’ll have use of my legs. But the thought of losing my hand function had never popped up until the last few years. Losing that means losing the ability to cook, clean myself, dress myself, toilet myself. It’s a big loss of independence.

The nature of having a degenerative disease is that you’re always facing loss. There’s an almost permanent state of grieving. I think I deal with this pretty well. I allow myself to feel the pain of the loss, let myself grieve it. Sometimes the downtime is longer or more difficult than others. But when that anguish is vented, I can pick myself up and keep going.

On these International days of recognition, we usually celebrate the cause. In this case, honour what is possible for People with a disability (PWD), celebrate all the amazing achievements of PWD and look at how we can move forward to enhanced participation for all. That is obviously, so important. But there is the other side which is acknowledging the dark times. Because, despite all the policies, laws, celebrations and working towards equity, nothing changes the fact that living with a disability is bloody hard. And it’s difficult to talk about because we’re supposed to be positive and look at the bright side, count our blessings. People want us to be their inspiration porn. And you know what? We are bloody tough but it’s hard being tough all the time. Maybe PWD can be an inspirational example of self-care. We all (everyone, not just PWD) get worn down by life at times, the demands and the stresses. You have to take time out to recharge, acknowledge that this shit is hard and sometimes ugly. Give yourself a break.

Mental health is faltering during the pandemic, and I think we all could benefit from acknowledging when we’re struggling, reach out for help and lift each other up.

And me? I’m gonna be fine. I got my e-trike last week and although I broke the gears on the first outing, when I get it back, all fixed up, I’m gonna be cruising round my neighbourhood with the wind in my hair.