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 and then proceed applying copious amounts of  lip gloss/get that one hair that won't cooperate in place/double check how your butt looks in those jeans in the "common area" of the bathroom.  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.  And those grab bars aren't there for ladies who are too drunk to pull themselves off of the toilet but rather so us 'cappers can get our wobbly asses up without falling on a dirty bathroom floor.  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 tag please hang it!  Or I will consider you to be just as inconsiderate as everyone else and  leave a lovely business card that I had printed up special for the occasions of douchery when someone parks with out a tag.

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.  It doesn't matter that I've maintained a  weight loss for over four years, that I just got my hair cut or am wearing a super cute outfit.  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 peoples' 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 as a self-dubbed chubster.  Even my current neurologist categorized me as "borderline obese" in his notes from my first visit in October of 2002.  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) and I've been able to formulate a brand of self-deprecation that is just shy of being 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 differently.  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 a Catholic girl - still am.  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 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." Bulllllll shit.  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 (pee issues, muscle spasticity), injection site bruises, incision scars... I will spare you the laundry list of boo-hooing and just say that it's never been easy and the past 12 years have been that much harder.

There are things I like about my body too.  I like the way my hip curves into my waist when I'm lying on my side.  I like the delicate swerve of my collarbone and the sweep of my neck to my shoulder. I like how my hip bones jut out when I'm laying on my back (Weird one, I know.  Air fist pump for weight loss in 3...2...1: GO!).  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.