every day life

The Grief of Disability

sam — Fri, 20 Oct 2017 10:41:57 +0000

The Grief of Disability

sam Fri, 20/10/2017 - 10:41

I was at a charity trustees meeting last night. The charity, Lancashire Central and North Area Quaker Meeting, operates over a chunk of north and central Lancashire, and we vary our meetings over the different sites, so a bunch of us were sharing a lift, and having nice and harmless conversation on the way down.

We talked about things done on holidays over the years, places people had been, and so on. Notes were compared on visits to Geneva, and I talked about how I went out of my way to look up the Villa Diodati, the site of the story-telling session between Mary and Percy Shelley, Lord Byron, and Byron's doctor, John Polidori. This led onto other reminiscences, including of a trip to Whitby with friends during a holiday to Yorkshire between A-Levels and university, where one literature student among us wanted to see the lighthouse that features in Dracula, about which their teacher had made much of phallic imagery. Given the size of the lighthouse, once we saw it, this was very amusing.

So far, so innocent (and juvenile, I suppose). I then remembered other things about that visit. How we parked on one side of the harbour, and walked through the town and up the stairs on the hill to the abbey. It's quite an experience – nothing Earth-shattering, but something I would recommend to anyone with the opportunity. It is a rather charming town, and the jewellery is worth writing home about, Whitby jet being a particular speciality.

But as I remember that trip, I was struck by the fact I couldn't do that today. Even were there a smooth path, not just steps, that climb and that distance would be beyond me. Even the walk through the town, from one side to the other, would be a significant challenge, leaving me unfit for much physical activity for a while afterwards. It's hard to express to someone who hasn't experienced it how much energy it takes to stay upright when your body doesn't do it automatically any more.

And so I stopped speaking, and cried quietly. I didn't want to explain to my fellow trustees why I was crying, so I endeavoured to have them not notice; the fact it was dark probably helped. So I sobbed silently, and let tears fall unremarked. I couldn't stop myself sniffling as tears ran through my tear ducts into my nasal cavity, but I sniff often enough that this wasn't remarkable. I cried for the things I would never do again, and for the things I never did and now never could do. I cried for the lost possibilities of my life, and for the fact I didn't appreciate these things as much then as I would now, if I could suddenly do them again.

Learning to live with a new impairment isn't simply a matter of learning and adapting. It's a process of bereavement, of grief. You have lost some capacity, you have lost possibilities for your future. Sometimes you will eventually find that some possibilities aren't as far out of reach as you first thought, and who knows what might happen in terms of new treatments or aids and appliances being developed, but that's not something you can afford to focus on at first. When I first developed narcolepsy, I spent a long time in the denial phase. Eventually I had effective treatment, and could do a lot of things against that I spent a couple of years unable to do, but because I didn't accept what I couldn't do in that time I wasted time, energy, and emotion on trying to push myself to do things I just couldn't do – like sit down and study a course book for more than 10 minutes, say. I berated myself, that if I just tried hard enough I should be able to do it. Eventually I accepted it, and even though it was temporary, I grieved.

Impairment is a loss, and like any loss we never truly get over it. Is there anyone who has lived long enough with a bereavement who doesn't know the sudden, sharp and surprising pain of being reminded of a loss. It may be years since you got over the initial rush of grief, and went back to living your life day to day without the sadness and loss bearing down on you. Suddenly, something sharply reminds you, often a particularly pleasant memory, and you feel that sharp loss all over again. It probably doesn't last long, and you can function, but for that space of time you remember all over again that grief and pain. So it is with long-term impairment, that you remember what you once could do, and can do no longer. Regret, loss, even self-criticism resurface. You get over it again, and you get on with life, but you will never be beyond experiencing it over again.

Why You Can't Tell When I'm Depressed

sam — Tue, 01 Aug 2017 12:42:54 +0000

Why You Can't Tell When I'm Depressed

sam Tue, 01/08/2017 - 12:42

You probably have a stereotype in mind about depressed people. Closed in body language, not speaking much, not laughing or smiling. Morose, sad, physically inactive. Staring into space, no interest in anything.

Not all of that is too wide of the mark, by and large. Depression, or depressive episodes, do tend to lead to certain behaviours. The obvious caveat there is the word “tend” - not everyone will present in the same way. Another is that certain behaviours may be a tendency in the individual, a sort of baseline, but they aren't completely impervious; being depressed doesn't mean never smiling or laughing at things that should provoke that reaction, especially if it's a book or film or TV show – something you can lose yourself in.

But that's not what I'm writing about here. The point I want to make is valid even if that stereotype were generally accurate, even though it isn't. This is about me, but it's a story that will ring true for a lot of people in similar situations; I haven't done a study or anything, but we crazy people do talk to one another sometimes.

When I suffered a lot of depression as a teenager, I think it was reasonably obvious. I spent much of the time being quiet, looking unhappy, not engaging in much. When I was bullied, I just took it, for the most part. With people I felt comfortable with, I even occasionally mused aloud about methods of suicide (in case you read this, sorry, Chris, for the morbid conversations on the way to off-site PE). I know the friends and teachers noticed, at least some of them, even without such dark musings.

At home, people didn't notice so much. I could hide more, simply by not being around. I would spend time on my own, or buried in books or work.

Somewhere along the line, I learned to be socially functional despite depression. In hindsight, it helped that the depression wasn't constant, and had bits of hypomania in between – but I didn't have a bipolar 2 diagnosis until around age 30, so that's hindsight looking back a long way. But, like many other people dealing with chronic mental ill-health, I learned that I got better outcomes out of life if people couldn't tell what I was feeling.

I learned to act as if I was fine, act gregarious, cheerful. It's not easy, but it gets easier with practice. So now, during a depressive episode, I still need to go out – to the bakery, to the pharmacy, all the little odd jobs that are close enough to do in person and impractical to do online. I go into the little local bakery and I greet the staff cheerfully, I talk to them about the latest developments in their business, or other local independent shops, or politics, or how to get children not to eat sweets (I don't have kids, I just joined in the conversation another customer started). I go to the pharmacy (they know me well, there, unsurprisingly) and chat with them about this, that and the other, I talk to other customers about the difficulties of ordering regular prescriptions from GPs. This is probably somewhere between my baseline behaviour and my hypomanic behaviour, to be honest, but I think I err on being further away from the depression I'm currently experiencing.

I can socialise, and so thoroughly pretend to be fine that I almost fool myself. I will genuinely enjoy company, humour, fun and games – though my enthusiasm will certainly be off from usual, and my sense of humour might be a little off-kilter. I might miss jokes and take them seriously, though I do that when hypomanic as well, at least if taking them seriously appeals to my interests.

Sometimes I'm not up to seeming fine. Most likely, you won't see me when that happens. I'll avoid any interactions with people I'm not prepared to be myself in front of, unless I absolutely can't avoid it. It's so ingrained, so habitual that I don't drop it even at times when I really should, like dealing with doctors.

You might think that this means that pushing myself into these situations would be good for me, that this coping strategy sounds like it is all up-side. Up to a point, it can be good for me, but it's certainly not all upside. That's because there's a real cost to this complete pretence. It is physically and mentally draining, but most insidiously I can't tell how drained I am by it until I hit a limit. If I've not overdrawn my capacity to seem to cope, then I feel fine while I'm doing it – and when it's safe to drop the mask, the weight of it hits me and I feel so drained. But if I hit that limit while I'm out, while the mask is on, it's like the floor dropping out from under me. I try to excuse myself and get away to where I can safely collapse, physically and mentally; once I used to try to kick myself back into it, but it doesn't work, so I just leave if I can. No-one wants a morose guy with a personal rain-cloud at their party.

When that happens, it really takes time to recover, and it does no favours to my overall mood during that episode. It leads to me hating myself, judging myself for the fraud and despising the weakness that I couldn't maintain it.

It's one reason I don't socialise in person so much any more, along with my physical difficulties. It's a risk. So, if you do see me, you probably won't be able to tell if I'm depressed. If you don't see me, it might be that I'm hiding at home because I can't manage to wear the mask, to put on the front – or it might just be that I'm out of the habit of socialising, or that my physical difficulties are getting in the way too much, or even that my caring responsibilities prevent me.

every day life

The Grief of Disability

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Why You Can't Tell When I'm Depressed

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