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.