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Friday, March 23, 2012

MS.. fantasizing and facing my reality

I had a wonderful time earlier today, chatting on Facebook with my best friend Krissy, who lives in Iceland.  She was, of course, terribly concerned about me with all the things that have been happening in my life as of late and wished she could be closer so she could be of some help.  What she doesn't seem to realize is that just knowing she is my best friend, no matter what, and has never treated me different because of the MS is priceless.  She sees me for who I am and not as a disabled woman, even though she is extremely aware of the problems the MS has caused.

I was fortunate to visit Krissy for five weeks in 1993, before going to Bolivia with my brothers, and had a wonderful time with her, her husband and her two boys, Ingimar and Daniel (she now has a third son, Ísak).  OK, so her husband and I didn't exactly hit it off too well but being with Krissy more than made up for it!
Me and Krissy at her mom's house, May 1993
While Krissy and I were chatting today, she was a bit sad and said "lets just dig deep and try to remember something that matters" and I responded "so lets pretend we're both perfectly fine and imagine what we would do."  I've often thought of this but never put it into words with her because it seemed rather futile but hell, why not?  Once in a while, I don't see any harm in fantasizing things one would like to be able to do, no matter how unrealistic.  So this is what we did, although it's far more difficult for me to make things come true when I'm trapped in this body.

First of all, Krissy and I have been best friends since the 7th grade and this deserves a photograph, right?  OK, so here it is!  She may kill me for posting this pic but I'm willing to risk it since I know she loves me.. please remember that when you get upset with me, Krissy!
Krissy and me, Halloween 1981
Now back to the fantasy we were talking about earlier today.  If I'm going to take the time fantasize, I'm going all the way!  I didn't have too much time to go into details as I needed to take Emmi Sue to the vet for a quick appointment, but we had the chance to get into it at least a little bit.  The first thing I think of when I imagine "perfection" for myself is my weight.  Right off the bat, I subtract many, MANY pounds off my small boned frame so am able to fit into outfits I have never been able to wear.

As much as I hate wearing red, it's one of the best colors on me so I imagined myself in a short, tight red dress and ridiculously high heels since I can't really wear those in reality.  I'm sure I would have paired the heels with some sexy fishnet thigh highs to make the outfit complete.  Krissy opted for more casual attire, as she chose to wear a thin grey sweater with jewels on the shoulders and a swoop neck with light blue skinny jeans and closed pumps.  I think she would have looked incredibly hot but that's the way I feel she looks all the time!
I would probably choose to wear something like this, minus the feather
After I was mentally dressed, I saw myself dancing.  I have been told, on a few occasions, that I have very good rhythm but the unfortunate part is that I never had the opportunity to dance.  It really wasn't until I was in Cochabamba in 1993 that I started moving my body to the rhythm and beat of Bolivian music and it felt wonderful!  It was as if I finally found music that spoke to my mind and body and allowed me to move, even if only in the chair in which I had chosen to sit.  So as Krissy and I were chatting, a thought came to me.  With the attitude I have now, minus the MS, would I be the fantastic dancer I believe I could be?  I know there is no way to know this so I'll try not to ponder it too much.


There are other thoughts that have gone through my mind over the years, such as if I would be as confident as I am today if I didn't have MS.  This disease made me confident in myself to a different degree as I had to swallow my pride many times and basically say "fuck it" repeatedly when I was faced with nearly impossible challenges, that I became strong in ways I had never imagined.  And the thing is, I like who I am.  I really do.  If I could be who I am without the MS, I would love it.. but I don't think that would be humanly possible.  I needed to go through all the pain to get to where I am today.  I'm not saying I'm thankful I have MS because I'm not.  But at the same time, I don't know who I would be WITHOUT this disease.  It has been with me for half my life so it is part of who I am.  Part of my identity IS my multiple sclerosis.  I hate it.  I despise it.  I want to be eternally in remission.  But I don't know who I am without it.  It makes my mom cry when I say such things to her, but it's mostly because she cannot understand and never will.  She had breast cancer, a mastectomy, the cancer was gone.. end of story.  There is no "gone" for me.  Mine is forever.  It's like a bad marriage where there is no chance of divorce or even a separation.  Or maybe it's more like conjoined twins who can't live without the other as vital organs are inside her half of "our" body.  I can compare it to many different things but in the end, I have MS until the day I die and that's just the way it is.  I accepted this a long time ago and I'm even OK with it.  I don't LIKE it, but that's alright.  I'm not crazy about my very flat butt either but I've made my peace with that aspect of me, too.

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