Apr 212006

or so it would seem for some select vocal members of the Multiple Sclerosis community. In the latest edition of InsideMS there was an article on the people with Multiple Sclerosis voicing the support to the FDA for Tysabri’s return. [PDF version with both quotes] (For the record I have no stance on Tysabri. I am doing too well to take a drug this new on the market). What I found most interesting, and upsetting, about the article was two quotes from fellow MS’ers. Barbara Cooks: “Tysabri was easy to take, and it improved my walking and mobility. I’m not afraid of dying; I’m afraid of living as a burden to those I love.” And Marcy Canavan “Quality of life is more important to me than quantity of years lived.”

My suspicion is that these views are not really well thought out, or is mostly rhetoric to get the desired result of a return of Tysabri. Regardless, what I dislike is the radical devaluation of life, and those with disabilities, in their quotes. Quality of life is more than being able to walk or use your hands or any number of other activities. I certainly would rather not be disabled (or seriously disabled in the future), but I definitely would not rather risk death than be disabled. Secondarily, I think it devalues the lives that people with disabilities live every day, with many having an excellent quality of life – some certainly even better than people without disabilities. The idea that quality of life revolves around a lack of disability is a very poor view of quality of life. If a person would let a disability ruin there quality of life, and define their life, then they have really let the disability/disease win.

I do suspect that their attitude is simply a reflection of a much larger problem of the view of quality of life in modern times. I guess the question becomes has Singer’s philosophy become this prevalent, or is he simply echoing the subconscious of the masses (in a more philosophically consistent way)?

Dec 112004

Disclaimer: This site is not a support site and in no way do I try to, or want to, make it that way. I’m sure I offend people and for that I’m sorry but not sorry enough to change. This blog is a glimpse into my life and my experience with MS. Read on but this isn’t a supportive post – you’ve been warned. 😉

I came across a post (and apparently so did Becca ;-), The I Hate MS Post (Removed, it is now a bad link 3/26/2012 http://www.thepinkbee.com/2004/12/i-hate-ms-post.htm) , and the post really just irritated the crap out of me (not literally 😉 Read the post if you want but it is really negative and mostly a bunch of down-in-the-mouth crap. I don’t mind a good vent once in a while (and certainly I’ve posted my 10 bad things about MS) but this just smacks of pity me I have MS my life is over. I know there are people out there who feel that their life is over, apparently this is one of them, but it’s time to get a grip on reality. These types of posts by MS’ers just further serve the myth that your life is over or has to take a 180 degree turn because you suddenly got diagnosed with a chronic illness. Furthermore, if you do become disabled get over it and get on with your life. No one wants to be disabled but there are so many awesome devices out there now there is no reason you can’t keep going on – even if the disability ends up in your hands like it may for me. I really like Katja’s philosophy (Bad link now 3/26/2012 but it was a good post http://brokenclay.org/wc.html) that by stopping doing the things you want to do you let the disability win. (I hope I did a fair 1 sentence overview of that) Overall this post just seems like an excuse for giving up. I’d understand a lot of worry, frustration, etc. for someone newly diagnosed (heck I was there) but she made numerous mentions of her diagnosis being well over a year ago.