I realize it has been a while but I have decided to do this again. However, I have decided not to pressure myself into doing it every day. Well, this seemed to be my problem before. I felt if I couldn’t do it every day, then I needed to stop. However, Ataxia isn’t that way. Some days aren’t the greatest and you have to just go with it.
The word I’ve chosen for today is ‘prelapsarian’ which refers to the quality of innocence and being carefree.
Because the long awaited Boston Support Group meeting at MGH is going to be this Saturday, I thought I’d resurrect this blog.
This article has a lot to do with perspective. When some people see me, I wish they would not assume they know what I’m going through. Some of us have a “high tolerance of pain” so never assume it is “not that bad”. So I wonder how you would respond if you could feel what I feel. Continue reading
I wore my old conference shirt to volunteer this morning and was reminded of a very special time. It’s hard to believe that it’s been so long, but it’s been 10 years already. In 2006, the then “New England Support Group” hosted the National Ataxia Foundation’s annual membership meeting.
There was such a camaraderie amongst this group that I just can’t describe. We all worked together to pull off a wonderful weekend. While engaged in planning for this event it was like we weren’t disabled. We were on fire! Now there is dancing at every annual conference but ours was the first!
But things change. This group has changed. Some have gone in different directions. Sadly, some have passed away. But of those still around we share a common bond. We are all dealing with or have dealt with a similar disability. It is so nice to be around people that truly UNDERSTAND!
If I used a cool looking cane, would people just grab it from me in order to get a better look? Would they even point to it and say, “May I?” And when walking in the mall, would people stare and say loudly, “Wow, look at that cane!” or make some disparaging comment like, “Is that a cane or a totem pole?”
I don’t think so!
Yet, people do act that way about Denim. I realize that my Ataxia is not really obvious, unless I’m walking, but would you assume that a person walking with a “cool cane” didn’t really NEED it? When I am using her to help me stand, and someone asks if they can pet her, that puts me in a weird spot. Think of her as a really cool cane (but so much better)! I traded my cane for a Dane!!
Sitzmark is a word used in skiing which refers to a sunken area in the snow marking a backward fall of a skier.
When I hadn’t yet been diagnosed, I did a lot of cross country skiing. However, I started falling a lot for no apparent reason. All those sitzmarks were one of the first indications that something was wrong
Aposiopesis refers to a sudden breaking off in the middle of a sentence. I guess I forgot what I was going to say…This is so indicative of so many of us with Ataxia. I just never knew there was a word for it! All day long yesterday I would tell myself that that I was going to write this post, sit at the computer and then promptly forget what I was going to write about. 😃
Presenteeism is the practice of coming to work despite illness or injury. This seems to often be the case for those of us with Ataxia. We can’t just “sit home” and wallow in self pity.
It is also working at a job without obligation, like volunteering. This reminds me of two articles I once wrote about my volunteer work:
Today’s word made me laugh. Kerflooey is an adverb meaning to cease functioning, completely and fall apart or fail.
Well isn’t that just the perfect way to describe many of my motor functions? Yes, my legs don’t respond the way I expect anymore. In high school I ran track but now, well, they’ve just gone kerflooey.
The word “aeonian” is an adjective meaning eternal or everlasting.
I am not naïve enough to think that Denim will be around forever. However, for the time being, I can always depend on her to be there when I lose my balance, fall down, try to go up a steep hill, get up from a chair …..
I am going to start a new feature in this blog: “What-if” weekends. Each weekend I will attempt to write about some completely obscure scenario.