A space for grief (part 1)

There exists a societal expectation that people with disabilities should suffer "nobly". In practice, this means we should discuss illness with a rictus grin and manufactured enthusiasm for the things we can! still!! do!!! or (preferably) not talk about it at all. This stance is equally reflected in the UK's "pull yourself together, man" attitude to mental illness. As a community, we do what we can to mitigate this thought process, but many of us have quite understandably internalised it. In this post, I am going to discuss grief, a subject the disabled community is largely silent about.

Many of you will be familiar with Elizabeth Kübler-Ross's five stages of grief, namely: denial, anger, bargaining, depression, and acceptance. It's worth remembering that, as Kübler-Ross herself states, in practice, some people will experience these stages "out of sequence", or find that some recur or don't happen. Personally, I have often found that grief is cyclical. How often do we grieve a single loss of one concrete thing? I'd suggest this happens comparatively rarely; instead, many individual incidents will cause micro-cycles of the whole process. Grief rarely ends at the first acceptance.

My own condition has recently deteriorated to the point where I am requesting a wheelchair, which I expect to use around 30% of the time. I currently walk with a stick, but due to nerve pain, weakness in my core muscles, and my increasingly frequent dizzy spells, I can only sustain this for so long. Getting a wheelchair will be a positive step - it will enable me to do so many things I thought I'd lost forever - but there is grief for the loss of normality, and for the things I will have to leave behind.

It was my friend Alex who first suggested that I might want to look into getting a wheelchair. Alex has written very eloquently about navigating healthcare services as a part time wheelchair user, and is a keen advocate for those who share some or all of their experience. At the time, I brushed the suggestion off. I was still walking just fine, right? Sure, it hurt, and it was tiring, but it couldn't be that much worse than what an average person experiences, surely? (Side note: I only recently became aware that most people aren't in pain 100% of the time, and I'm still reeling from the realisation.)

The turning point was the day I had my first singing lesson in several months. Singing is very physically intensive. It requires excellent posture and core strength, careful control of the jaw, vocal apparatus, and abdominal muscles, and (in a lot of cases) standing up. After 90 minutes, give or take, I am very tired. By the time I had walked the ten minutes to the nearest bus stop to my teacher's house, I was completely exhausted. I got home, slept for three hours, and took a further 24 to fully recover. As I lay in bed, a coherent thought registered in my fatigue-addled brain: maybe, if I hadn't had to walk, I might still have had some energy to get on with the rest of my day.

If it had just been that one isolated incident, I expect I'd have brushed the idea off again, but this time it stuck. I remembered other times when the kind of A to B travel that many people consider routine have completely wiped out my energy; I thought of the pain I experience on public transport and the anxiety I face whenever I have to go out. And the same kind of thing keeps happening.

Have I been angry? Of course I have. I've been angry with doctors throughout my life who haven't given me a fair hearing; with specialists who could have diagnosed me but didn't; with myself for not trying harder to "just get on with it"; with all kinds of other people and institutions in all kinds of situations. Have I bargained? Sure. Maybe, after all, if I just get another physio to see me, or I get another referral to somewhere else, they'll tell me how to fix it and I can be normal.

As you can imagine, this kind of thinking takes its toll after a while, and depression is almost inevitable - not least when, like me, you have a mental illness to help you on your way. These few months of rapid decline have been tough on my loved ones and hell for me.

I'm not looking for sympathy here, and I won't accept your pity. It is what it is, and I'm going to get on with my life as best I can. But if someone in your life is going through something similar and needs to talk about it, let them talk. Grief is real, and it is valid, and we need to make spaces - both within the disabled community and outside it - where it is safe to grieve what we're losing. Only then can we work with the things we have.