I recently received an email from a long-standing friend in the Dharma, and reader of this blog. Reproduced below, with her permission, are personal reflections on disability, sparked by an audio posting, (2006 – now long gone.)
Lovely to hear your voice Reverend Mugo. I saw a documentary on TV about a year ago about the lady with autism who is quite a character I think. I worked with some autistic children and was/am fascinated by the whole thing.
With reference to transitions–as you say, and sometimes we don’t realise till later that we’ve been through one. I am currently in a funny one which I find interesting. I’ve spent the last 2-3 years being ill and incapacitated with osteoarthritis. At first, I tried to hide it and was embarrassed when I first began to use a walking stick. Now I would never feel self-conscious about using a walking aid or any other kind of aid.
I didn’t know what was wrong for a long time. I’ve discovered it’s common for people to be relieved when diagnosed, no matter how bad the diagnosis is. It’s better than not knowing. Since having to stop work I’ve hung out with other disabled people and with older people in my village, especially a lady in her mid-seventies who uses a wheelchair and can move one hand only. She can talk and hear well though. I know well two more women with MS who use wheelchairs and a lady who was very close to death after a brain bleed, and many more suffering from various forms of arthritis. They are all very individual characters with real determination to get through each day positively.
I feel privileged to have been a part of these communities. When I first went to a hydrotherapy class run by the local physiotherapist at the swimming pool it was wonderful to be with a bunch of other people with problems. The non-disabled community had begun to seem like they spoke a different language from mine and didn’t ‘hear’ or understand what I said. The disabled people didn’t need to have many things explained to them. We were in the same boat and could discuss our problems without feeling we were complaining or ‘harping on’ about our difficulties or being boring. We were interested in each other.
Now I have recently had my second knee replaced (well, partially replaced to be precise). I have 2 rectangles of metal above and below each knee with a plastic bendy bit between. Soon I will be able to walk ‘normally’ and should be able to stop the painkillers I’ve used on and off for 3 years. I won’t be classified disabled any more and won’t be entitled to an allowance or a special parking space. Unlike some people’s daft ideas I won’t be bouncing around like an 18-year-old! I will still have the body of a 56-year-old after all – and I won’t be running marathons.
My friends in the disabled community have been encouraging and supportive all the way through. They never say how lucky I am to be getting a second chance, luckier than they are perhaps. Sometimes I stop and think after I’ve said something to my friend in the wheelchair, like grumbling about what nuisance crutches can be. she would probably love to have that problem.
I actually didn’t care if I never walked again but was desperate to be free of the constant pain which is so incapacitating. Some of the people I know have a lot of pain and use various devices to control it. Others are not very mobile but don’t feel pain. Painkilling drugs bring their own problems and most of us have gone through periods of trying to do without them. Most people have good days and bad days which is something many non-disabled people find difficult to comprehend.
So, soon enough I have to return to the ‘real’ world. I may have to get a job. I am hoping to do a training course in counselling and maybe work with dying and terminally ill people. I hope I never lose sight of how it is to be overlooked by the majority because I can’t run around or walk like them. Or of how frustrating it can be to be ignored or simply not understood when in pain or discomfort. Or not considered ‘interesting’ because I don’t do an important job or have much of a social life.
I think I’ve said mainly what I wanted to say.
Thank you Reverend Mugo once again for being there and for having sparked off my flow of expression on this subject.
With love, A
Thank you, and good fortune for the future. Mugo