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.

Getting up is hard to do

Here's a fun fact about me: every morning, without fail, I will wake up to find that one or both of my shoulders has partially dislocated.

When I tell someone this for the first time, I tend to experience one of three reactions. There's grim recognition from fellow bendy people; horror and wincing from my able-bodied friends; and a confused look of "I thought that was normal" from people I then advise to ask for a rheumatology referral from their GP.

The idea that not everyone wakes up in a certain amount of pain is a relatively new one for me. Because it's been happening to me for at least nine years, I'd assumed that this was normal for everyone to some degree - that everyone woke up and had to immediately readjust their shoulders, hips, and several vertebrae. Imagine my shock when I found out that some people can just roll out of bed and get on with their day!

I had long imagined that the world was divided into Morning People and Night Owls, and that the two would never understand each other. I thought that morning people probably practised some form of black magic, because mornings for me are impossible. To begin with, I can't remember the last time I slept through the night and woke up feeling refreshed. Between physical pain and the chronic anxiety that tends to soak into my dreaming subconscious, I wake up every few hours, gaze despairingly at the clock, and hope vainly that the next time I look at it will be when my alarm goes off. When my alarm does sound, I will very often fall asleep again the moment I press the off switch, because I'm still exhausted.

Once I eventually wake up, which can be up to four or five hours later if it's been a really bad night, I have a brief and blessed window before the pain kicks in. I'll spend about ten minutes gingerly testing all my various joints and limbs to see what's fallen out, and stretching any painful muscles, and then I'll try to get out of bed. This can take several attempts, because often my hips will pop out as I move to put my feet on the floor, or I'll see stars as I straighten up and have to sit or lie down again. The whole process of getting out of bed generally takes upwards of 45 minutes, and it's very difficult to accurately factor it into my plans for the day.

As an added bonus, it can take up to two hours after getting up before I can keep any food down. And I can't string a coherent sentence together until I've had two cups of tea, but I'm given to understand this is a rather more common experience.

So next time someone tells you they're not a morning person, hang onto your comments. They might just be a bit slow to start, but they might equally be going through something like this.