Tuesday, May 24, 2011

A Potentially Offensive Brain Dump

What the hell. It's my blog and fear of offending people has never stopped me before. I'd like to think that my blog readers count on my brutal honesty. So here goes.

Sometimes I hate hearing about other people's MS symptoms. Sometimes I cringe when I learn that people I know with MS are struggling with walking, talking, and fatigue. Sometimes, I guiltily enjoy the fact that my MS is invisible.  I never lie about my MS. My blog is public and I use my real name so I'm not denying it to myself, to you, or to the world, but still...

The reality is that people have their preconceived notions about MS and people with the diagnosis. They hear MS and automatically think of canes, walkers, and wheelchairs. To paraphrase Seinfeld:  Not that there's anything wrong with that!

But there kind of is. It's like thinking that everyone who is gay speaks with a lisp or is a great decorator. Sometimes I think people are waiting for me to fall down, start slurring my words, or imagine that any day now I'm going to need an assistive device. Maybe they stay clear of me because they don't want to have to take care of me someday. I imagine that they think I'm just marking time until I get that purple polka dotted cane and go on disability.

I know, I know. What other people think of me is none of my business and I have not been gifted with mind-reading capabilities. But it bugs me.

Maybe I will end up with disabilities beyond my visual impairment but maybe I won't. After my diagnosis, I made huge changes in my life--reducing stress, changing my diet, meditating, writing, and more. I'd like to believe that those changes, combined with my positive attitude and the first-class medical treatment that I alternate taking advantage of and rebelling against, will prevent any progression and deterioration.

But maybe I'm full of shit. I have no control over most things, including my MS. Maybe it's not other people's prejudices that are pissing me off, but my own. Maybe I don't like to hear about MS symptoms because I'm still in denial (or vacationing there). Or maybe I'm just scared.


  1. Not everyone with MS ends up disabled, you are right.
    As far as being scared, you just could be. MS can be pretty scary, whether invisible, or out there in full view for the world to see...

  2. You're right, Karen...MS can be scary. It can also be an amazing gift...which sounds so schmaltzy after what I wrote earlier, I know! That's the thing about MS...it's all a matter of perspective.

  3. Julie,

    The main reason I don't hang on MS web forums or in local groups is because, like you, sometimes I don't want to hear it. But not because I'm skeered, I don't think. I get frustrated and pissed off with the, "since MS, my head hurts, I can't poop, my finger is numb, I always have a cold, nobody understands how I feel, blah, blah, blah.."

    To all mankind - MSer or not - I say: 1) take your head out of your ass and move forward in this world with what you CAN do, and 2) sometimes a headache is just a headache.

    Geez, I hope I didn't hijack your post but I think I get what you're saying and you get what I'm saying. Right? (fingers crossed)

  4. Anne,
    You absolutely, positively did not hijack my post! You made me feel like you get what I'm feeling and since you don't suck for feeling it, I must not suck either. :-)
    Thanks for sharing.

  5. Julie,
    Sometimes we suck, sometimes we don't. Sometimes we're full of shit, sometimes we're full of wisdom. A lot of times we're ambivalent. That's life.
    Sometimes we're brave enough to share ideas others might find a little....well....outlandish. But then we discover we're not the only ones who feel that way.


  6. It seems that you are feeling exactly what you are supposed to feel for today! Nothing wrong with that. I used to hate hearing about or seeing assistive walking devices. I wasn't prepared to have problems with my legs.
    In the defence of people who do write about their symptoms, I do believe that it is helpful for someone experiencing the same thing.
    Be Well