Saturday, December 26, 2009

Different and unexpected

It must be between semesters and I'm randomly posting thoughts coming to mind more frequently... This stream of thoughts is hard to clarify. But it's mine in this random blog, so that's how it will be.

Christmas was wonderful--to have family here in a fairly relaxed environment; to see everyone and talk with everyone; to see Lori's excitement at the day. Two years ago I was getting better; a year ago my mom was undergoing chemo; this year brought something unexpected, though it shouldn't have been.

I think once I had MS, I somehow developed an assumption that nothing was going to happen to anyone else because MS had happened to me. That's probably because I was young, knew no one else with a disability, and didn't have parents that I considered old at all. To me, my parents were never going to age.

The last few years has changed my strange assumption that nothing is going to happen to anyone else. One friend of mine has ALS; another friend with a spinal cord injury has complications from that; many other friends with disabilities struggle with different things; and now my godmother has Alzheimers. It makes me think of a training exercise I obnoxiously disputed, where a group of us was given four disabilities and made to choose one we would "prefer" and the one we would least like to have. At the time I thought that was awful, because while it pointed to the bad assumptions people have about different disabilities; more evident was that it made people with those disabilities feel horrible.

Now I have a another thought which was only in the periphery then. We don't get to choose what we or a family member hsa. We may get something and somehow God helps us and our loved ones muddle through it.

I knew my godmother has Alzheimers as I was the first outside their immediate family to ask if something was happening. I had seen some deterioration. But I did not expect to see her this time with it unclear if she knew it was Christmas, who I was, and having difficulty knowing whether to use the spoon or knife. For some reason, this was striking, and brought me back to that "What would you prefer?"

And to that, I now think what I need to point to is that we don't get to choose. What is better is to talk about what each person may need for support, how best families and friends can help, and how those who act as caregivers can receive support.

I see my godmother and know that her husband is perhaps the best support person she can have. But I wonder if he is getting the support he needs, and that also depends on what he wants. I think we all need to talk more about this--we need to get past classifying people and focus on individuals.

With the new year coming, maybe I can turn some of my efforts to this. I know God helps us muddle through it all. But can we help those who "muddle" (I guess this includes me), realize the resources available to them and they don't have to muddle alone? I think God is behind some of this, and can give greater support if people aren't in things alone. It takes a village... a village in constant motion... a village that never really stops or reaches an ending point.

1 comment:

Clare said...

My husband is my primary carer and gave up work to do this. And I am truly thankful for Him, but he needs his time and a local carer service around here offers days away to safari parks ,hystorical houses, lakes etc. They get to know each other and share experinces and swap tips, this is so valuable to them and making friends for life with many.