Christine’s Ataxia Blog

The Language We Use

August 13th, 2008

“Disabled”,”afflicted”, “suffering from “,  “fighting”, “battling with”, handicapped”, sick” “illness”, “disease”…these are all words banished from my vocabulary. Someone once asked me, “what’s it like since you’ve got sick?” Another article described ataxia “sufferers” as”battling against” a “cruel disease”…I tell you, after reading the article I felt terrible, before reading it I felt pretty good! Whenever I get a sickness question  I always end up looking over my shoulder to see who the speaker is talking about. I don’t know about you, but I don’t want to battle with or fight anything . Fighting implies a winner and a loser and, sometimes, life’s not about that. Corny as it sounds,   I’ve tried to make peace with my particular medical condition (sporadic SCA2), I’m far more relaxed  about what I can and can’t do and work, in a more relaxed way, with my abilities. My days are still full of big & small frustrations ,but not approaching myself in a negative way sure has  made a big difference for me. Language is a very powerful thing  and  using the words I’ve mentioned above t0 describe anyone’s medical condition can be extremely insensitive. I’m sure the people who wrote the words & said them didn’t mean to be unkind but, actually, after hearing them a lot, I started to feel pretty awful. Pretty soon I started to feel “disabled”, “sick”, and “hopeless”-a self-fullfilling prophecy. Pretty negative thinking, I know, but people challenged by all sorts of health issues are faced with them everyday. I think most of us are keenly  aware of our medical conditions, wouldn’t it be more constructive to hear something a bit positive? I mean….come on!

Positive attitudes didn’t begin in earnest, for me, until I received my stem cell treatment in China ( I’ve been home for 18 months…wow, does that make me an “old timer”?). Never once, by anyone there, was my health put  in a negative light. Everyone knew (including myself) what I couldn’t do, concern was only shown  over what I was able to do and could learn to do. Any positive attitudes I have now, I started learning then. I refuse to think otherwise…I find negative thinking a waste of time & a detriment to progress. Yes, it’s hard work sometimes but weeding out the negativity in my life and focusing on nurturing the positive has made a big difference for me.

For some reason I haven’t been receiving my blog comment e-mails for a couple of months, I’ve caught up with them but  I apologize to anyone for my “lateness”. It’s very important to me to hear from anyone reading-don’t hesitate to get in touch. Hopefully, I’ve rectified the communication problem. Also, here’s a new website to take a look at, if you like:  http://www.stemcellsforhope.org

This was started up by a former Beike patient.  It’s worth a look…

Anyone who’s read my blog knows that I’m always talking about doing my exercises. Well, yes, I’m still doing them, essentially the same physiotherapy moves I learned in China. They’ve been a huge benefit to me and I intend to keep on doing them. I’ve also added a bit of gentle yoga & ti chi.  I still experience an “ebb & flow” in my abilities but Istill retain all the improvements I gained from my stem cell treatment . Also, I don’t know this for sure, but my SCA is “sporadic”- not genetic ,so I wonder if my treatment could have altered the progress of cell deterioration…

Well, enough for now. On the personal side, we are having a wonderful, warm & sunny summer in Vancouver and, of course, we’re watching the summer Olympics unfold in Beijing-good luck to ALL the athletes…I also helped my parents celebrate their 50th wedding anniversary and my son’s 16th birthday…wow…it’s been busy. Wishing you all a good season, keep  in touch, take good care…

Best Wishes,  Christine

A man is but the product of his thoughts what he thinks, he becomes.
Mohandas Gandhi

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