Thursday, July 7, 2011

On being a (disabled) woman with MS

I've been thinking about this a good bit lately, and I hope that I can express such a delicate subject matter with grace and humor.  If you know me and you're reading this, I am now making myself that much more vulnerable to you.  But if I can't be honest with you, how can I be honest with myself?

And let me also say that the purpose of this blog is not to cast a giant net in hopes of catching a compliment or two.  I'm just trying to explain what's going on in my head.  It's a mess up there.

It's one thing to have MS.  Being a woman is another thing entirely.  But a woman with MS?  Woah, my life just became 10,000 times more complicated.

Before we go any further, let's cover the basics:
1. To my able-bodied ladies: the handicapped stall is not meant to be your personal beauty salon. If there are regular stalls open, please avail yourself to one of them.  If I have to go to the bathroom and you're playing Miss Fussy Pants in front of the mirror in the one stall I can actually get into, that's not cool.  I need that stall so I can wheel right in.  I understand if you have small children to corral or there are no other stalls available.  If that's the case and you need use the bigger stall: make it quick. Please, and thank you.

2. Handicapped parking spots are not in place for you to run inside real quick for <<insert random Saturday errand running here>>.  Don't do it.  It's not cool.  Your legs work, make it happen.

3. If you have a handicapped tag, please hang it! 

4. Don't stare.  You only make yourself look like an idiot. At least to me.

5. Dressing rooms: see #1.  Insert changes where needed.

Sorry, just had to get that out.  I'm ready to move on now...

Let's face it, whether or not it's a satisfying revelation: we are all judged by our outward appearance.  When you see me rolling towards you in my Pride Go-Go Elite 3 wheel scooter, that's the first thing you see.  Don't shake your head.  You know it's true.  And unfortunately I, like many women, base a portion of my self worth on other's perceptions of me and how I look.  We all do it to varying degrees because it's impossible not to.  As I've gotten older/become disabled, I've started to care a little less about what people think of me.  It's still a compliment when someone tries to flirt with me (note to my husband: no one flirts like you do), as rare an occurrence that may be but really, who would want to?  I've got a truckload of baggage hidden just around the corner- literal and figurative.

Scooter aside, I want to be desired and desire someone- to receive love and give it in return.  It's innate, isn't it?  We all have our hang ups. I have spent most of my life overweight.  Even my current neurologist categorized me as "borderline obese" in his notes from my first visit in October of 2002 (after a 25 lb weight loss).  In my brief stint as a Girl Scout in the 4th grade, Sears had to special order my uniform in the "Pretty Plus" size.  High school was no fun either.  Someone made fliers with my yearbook photo on it that read, "Have you seen me? If so, please call 1-800-FAT-COW".   No lie.  It's an understatement to say I have self-image issues.

As the years have gone by, I've actually shrunk quite a bit (-25 lbs in 2000, - 25 lost in 2009 and -10 lost in 2012) but in a cruel twist, my disabilities have gotten worse.  So it's basically a wash: trade one insecurity for the other.  I'm pretty close to a waddle when I walk and that's only with a walker in front of me.  Not sexy.  Just, no.  I want to buy cute clothes and show off my smaller bod.  But it doesn't really matter, in my opinion. I'm usually seated either in a wheelchair, a scooter, or a chair and I don't think anyone is looking at my clothes.  And that's my sad little perception.

Am I thankful my husband knew me before I became this version of myself?  Absolutely.  It makes me a little less self-aware when I'm trying to get down the hallway.  We laugh about it a lot.  To clarify - he's not laughing at me (most of the time at least; but some of the time, it's totally called for). I've been able to formulate a brand of self-deprecation that is just shy of pathetic.  But it is nice to be reminded of how it felt to be "normal", whatever that is. Even though this is pretty much my normal now, no matter how hard I try, I will always see myself able-bodied.  I was even on a kick for awhile of refusing to be in my scooter or wheelchair while someone was taking a picture of me.  I didn't want a permanent document of something I've lost.  Now? It's slightly better, but pride still gets the better of me from time to time.

Laughter is one of the most precious commodities in my marriage.  So much so that I can't place a value on it.  But it's so much more than that. There's an ever-present intimacy that cuts through any potentially embarrassing moments.  We laugh (I know I already said that, but we laugh everywhere - in the bedroom, too) at my physicality, or lack thereof.  That takes a level of comfort that, quite frankly, I never thought I'd possess.

In any relationship, especially a long term one, there is this sort of dance filled with nuance that you have to choreograph and nimbly execute or you wind up being at risk of losing what makes you such a great couple in the first place.  We aced that test and continue to.  Suffice it to say that living with MS has muddled it all up by putting both psychological and physical road blocks that inhibit me from expressing myself the way I want to. Still, we make it work.  Really well.  And that's all I'm gonna say about that.

I was raised a good Catholic girl.  I wasn't necessarily an angel when it came to the inevitable indiscretions of dating cute boys but there was one line that I refused to cross.  So my wedding night (at 22) was the epitome of a rite of passage.  I felt different after; entitled.  Fast forward to a year and a half later and my ability to enjoy one of the few things it felt okay to enjoy started to slip from my hands - try as I might to hold on it.  I was angry.  I was terrified, in fact.  This new part of me that I'd been celebrating was changing right before my eyes.  I had just gotten comfortable with the fact that it was mine and I was owning it.  I didn't didn't want to think about turning my ideas of love and sex on their respective heads.  And definitely not in the lame, National MS Society pamphlet way of defeatist rationalization, something in the vein of: "sometimes, just laying with someone can be satisfaction enough". I call that bonafide bullshit.  Anyone who hears that and tries to accept it is doing a really weak, half-ass job of consoling themselves.  Yes, cuddling is nice.  But there's a lot of things that are way more fun than a cuddle.  I mean, come on.

There are parts of my body I hate.  I think it's fair to say that everyone feels that way.  But, add in a blaring insecurity about how I look when I walk/the way I move/all of the bummer side issues that are a part of living with MS... I will spare you the laundry list of boo-hooing and just say that it's never been easy and MS complicates things to the umpteenth degree.

There are things I like about my body, too.  I like the way my hip curves down into my waist when I'm lying on my side.  I like my smile and my hands. I like the delicate swerve of my collarbone and the sweep of my neck to my shoulder. There's a landscape to my body that I can appreciate now more than I ever could.  MS has nothing to do with that.  But that's ok. I'm still a woman and want to be reminded of it. And I am. Thank God for that.


  1. what great insights. they apply equally well - with a few gender changes - to men. thanks for saying what is on all of or minds!

  2. freaking awesome post.
    been dx'd w/ ms going on 10 years as well.
    you rock.

  3. You've express what it's like for a woman so beautifully. I want to thank you, after reading this I think I will be able to use my new scooter. Had it 6 months and haven't used it because I was afraid of the reaction from others. To hell with that watch out world here I come!

  4. Can I plagerize you:) lol i was never a catholic school girl but it's still a cruel twist of fate. I hear ya. Keep on rocking xoxoKristin

  5. That was an awesome blog and I am going to share it.
    My mother has had MS for more than 30 years. Sometimes she has a grab the world and own it attitude like you. The times that she does have kept her sane. Keep up the fight.

  6. I found the link to your blog on the CCSVI fb page and just read it... Thanks for the humorous and honest blog! I feel the same as you do about many of the things you wrote about! I was diagnosed with MS in September, 2010 and have to use a wheelchair when I go out and I've endured the stares and the people parking in handicap stalls without a placard and tell me they were just running into the store for 2 minutes so trust me you're not alone! I enjoyed your blog as much of your article I felt like I was reading about myself! Thanks for the good read!

  7. Susie, you rock :) Reading this is both comforting and inspiring. Bless you.

  8. hi Susie,

    I was interested to read your comments.
    You might like to see my partner Margot's blog - she also has (very advanced) SPMS and is a writer


  9. love the information about handicapped parking. i'm not in wheel chair yet, but my mobility is very limited, so having a closer spot makes it much easier for me. it bothers me too when the spouse or family member hands the sign, and the individuals authorized to use it isn't even with them.