I don’t know how old I am any more.
According to my ID, I’m a few months past my 30th birthday, but what does that mean when you have a disability that makes your body somewhat unusual? What does that number mean, when you feel like parts of your body are ready for the pension and the bus-pass right now? What does it mean to feel inside of a body that does not live up to the age number in your head?
One of the hardest things about coming out of my most recent prolonged period of depression in 2016, was the realisation that at the very point I was ready to move forward and take on life with an intensity I’d not felt in over a decade, my body was starting to show me that it couldn’t match those wants. It was a profoundly dark moment at the age of 28, to realise that although I could do more than I’d been able to in a long time, this was still far less than I would like. And yet while I know that it is less than my peers, I have no sense of direction or trajectory with this.
One thing I’ve wanted for as long as I can remember, is to be able to do what my friends and peers could do. In the sense of having the same trajectory, sure adaptations have to be made, and allowances given for disability, but a sense of similar direction of travel is something I’ve always looked for. There have been times in life, thanks to depression, suicidality and crushing self-hatred that I’ve scrapped this idea, but in more recent times, I’ve had the sense that even though I was coming at the journey a long way behind others, that maybe I had more time to catch up than I thought. In the past two years, some enormous gaps have been bridged. To use a racing analogy, I feel I’ve regained contact with the pack from being miles behind. And yet this question of age is one where the gap has not closed, if anything it has widened. I feel I’m in many ways living the fullest life I’ve ever lived and yet the idea of my body being older than it is, is never far from me.
I find this question of ageing hangs over me quite regularly as quiet yet persistent background noise. This is one of those times. I have a heightened sense of my own fatigue, my own aches and pains, my own desire for a completely revamped spine as well as knees, ankles and feet that would behave in the proper way. And before anyone jumps in with any platitudinous bullshit about there being “no such thing as normal” – you know exactly what I mean – do not try to heal a wound by making it not be there. It is there. And it is there because as I’ve said elsewhere, there is no roadmap for this. Cerebral Palsy comes in so many forms that to nail down a consensus on what is expected is like trying to find a needle in a haystack. Does the ageing come purely from the wear and tear we put on our bodies? And if so how much? When does it start? A lot of sources say in the 40s – does this mean what I’m feeling now is unusual? Should I look into that? Are the pins and needles I have in my leg as I write this, a result of sitting on a high chair with my legs dangling, anxiety, or of poor circulation, and how much of this is down to CP? I could find those with lived experience of CP to support any of these possibilities along with a few others, for all that we know about CP the lack of certainty here is striking. I remember asking my excellent GP in 2015 about the severe and random pains I was experiencing in my back and shoulders – was this down to CP itself, pushing a wheelchair or something else? In hindsight it was probably the rampant anxiety that was with me for most of that year, but I remember her honest response that there was very little certainty around what to expect with CP and when. Certainly a decline in physical ability is inevitable, but how much and when, even the medical profession seems unsure how to answer consistently…
So how old am I now? I don’t know. I just know I’m frustrated, angry and sad all at the same time about it. At the age of 30, a process like cooking a meal should not be as exhausting as it is. I do not want to have to give myself time to just stop after walking any kind of distance because I can feel my heart drumming away. Growing up, I feel like I and my disabled peers were told that with the right adjustments, we could do just as much as anyone else. We weren’t given the small print that some of those adjustments would be us slowing down. Which leads to feeling cheated and somewhat betrayed. You don’t sign up to feeling decades older than your given age.
So much of the disability messaging that my generation has been given is to make the best of what you’re given. And I do that. But there are times like now, where frankly I just want to scream “This is not fair!!!” And there’s a place for that too, because it isn’t. At the age of 30, I’d still like to run and dance and play sport at a level comparable with anyone else in the prime of their life. Growing up I remember being endlessly told “There’s no such word as can’t”.
It hurts to say it, but it’s true, with some things – I can’t. I’m ready to retire, and I hate that. I can’t keep up, and that is truly painful to acknowledge. Because my brain has never been more ready to take on the world.