Yesterday I took the long trip to the city to visit my specialist. I normally see him every three months for treatment for the part of my condition that IS treatable, but I will be doing it for the rest of my life which is a bit sobering. But yesterday’s visit was for assessment of the part of my condition that has no treatment. I have an inherited neurological condition called spinocerebellar ataxia type 6 (there are about 50 types) with dystonia. The dystonia can be treated, the ataxia cannot at this stage. There is no cure for either of them.
I think I read that ataxia occurs in something like 1 in every 100000 people. In my family my sister has it, my father had it, two cousins on his side of the family have it, their father, my grandmother, and at least one of her sisters had it. My geneticist was delighted!
As some of you know about fourteen months ago, I fell and broke my ankle in three places, and dislocated it. This caused much mirth all over the world because at the time I was stamping my foot at the cat, and fell into the laundry hamper. The cat instantly ran under the bed (she was completely unharmed) but very put out about all this. I fairly quickly realised I had done something drastic and used my vital call pendant to ring the ambulance.
Three months later I was allowed home (the nursing staff wouldn’t let me come home till I was better, because I live alone, and also because people with ataxia do not “do” crutches, and were concerned about further falls. On my return it became patently obvious the ataxia was worse. I could not walk round the house without my trusty walker, and I certainly couldn’t go outside, so since I came home it has been a case of rest and recovery and teaching myself to do things again, on my own.
So I was a little bit concerned that the doctor would find my ataxia had progressed faster than it should. When it was my turn to see him, I found a trainee neurologist from Spain was also in attendance. I’m always happy for them to be there, what I’m experiencing might be just the thing that doctor needs to learn, and so help someone else. They were very interested in my downbeat lateral nystagmus. I very nearly said you should see it from my side! My doc gave me several tests, and pronounced that even with my “incident”, progression was “normal” and he was pleased I was coping well. So back in round about 12 months for the next assessment, 3 months for the next treatment.
At times I get introspective and think how much my life has changed. How many things I can no longer do at all, and how many things I have had to change the method I do it. And then I think well, I have no choice but to embrace my “new normal”. This is just the way things are, and I have to get on with it. My sister, aged 80, is my inspiration. She has the same condition, though without dystonia, still lives alone (though, like me, she has a great support system). Life goes on for both of us, and there is so much about life that is still so good, and very worth living. My other sister has a different neurological condition which also makes her life interesting, but like us, she gets on with it.
The sister with ataxia and I live alone. I dare say at times she wishes, as I do for myself, she had someone to share her life, but he would need to be a very special man who could look after a (physically) high maintenance female, but would also need to be smart enough when to stand back and let us do things ourselves, to encourage, but not to mollycoddle. Or there would be fireworks.
Very rarely have I said why me. I don’t blame God for this. The world can be a rotten place, and we were (un)lucky to have been dealt these hands. The type of ataxia we have will not kill us. We will die with it, not of it. Other types take their sufferers early, one young man recently was in his late 20s when he passed away. Others have been in their 40s and 50s. Some have had painful lives. So when you look at it things could have been much worse. I rarely get lonely. Just sometimes…..
I have so much that I thank God for. I thank Him that He is my Saviour. I thank Him for the blessed hope of His return, and of course in advance I thank Him for my new glorified body that will work the way it should, and will allow me to run and jump instead of staggering around like a drunk. I also thank Him in advance for my voice that will sing in tune beautifully, and will not slur and make me sound like a drunk as well. I thank Him too that my intellect is still there (though it takes me a lot longer to work things out these days). I thank Him that I live in a beautiful country and in a wonderful caring community, where people do care, and take care of me, and each other.
I also give thanks for wonderful friends and family. Some (friends and family too) I have yet to meet physically, but the love I feel for each of you is deep, and intense. Whether we agree is not the issue. Our hearts have met and I care for you all, and I know you all care for me. Another reason to look forward to heaven. I could not live here without my friends who are willing to help me at a moments’ notice. You all mean so much to me.
Come Lord Jesus, so the feasting can begin in heaven!
Light of Christ 