Wednesday, January 9, 2008

I will fight...

...for my right to be disabled. That sounds really melodramatic so let me explain. Ever since I have been diagnosed with MS i have been urged to keep fighting. "Don't give in- just keep fighting". "It's good to see you. You look good. You're a fighter." "I see you use a cane now...but don't give in- keep fighting." I can pretty much mouth the words along with whomever is speaking. I know ...just keep fighting. That's a load of crap. What, may I ask, am I fighting against?

I took those words to heart for the first seven years of my diagnosis. I fought and fought. I fought with my legs. I fought with my body. I consumed copious amounts of caffeine just to stay alert. I forced myself to do things that my body protested against. I fought. But how do you fight MS? It's not an enemy. Its not an outside unseen force that threatens to overwhelm you and occupy your body turning you into a flesh eating zombie. It's not an infectious disease that a few days/weeks in a hospital bed can cure. It's me. I am the MS. My immune system is doing the damage to my nerves so my legs can't communicate. Fighting this just means I am fighting myself. By not recognizing that I am the MS, by rejecting this condition as an inherent part of me, I am denying part of myself. And I think that might be just a tad unhealthy.

This "just keep fighting" attitude goes hand and hand with "I know/heard of/watched a show on this person with MS and he/she ran a marathon/climbed a fucking high mountain/rode their bike across eighteen different continents/got 25 post graduate degrees/crossed the Gobi desert hopping on one foot with their left arm duct taped behind their back." I resent these helpful stories. They are stories of amazing achievement and personal strength...and they would be if ablebodied people did them too. But for me these stories seem to imply "and if they can do it why can't you?" Because I'm not them am I? I ride my stationary bike 5 miles a day ('cause it doesn't fall over as soon as I look at it much less try to ride it). I have a bachelor's degree that took a hell of a lot of effort, not to mention money, and was well worth it. I like looking at pictures of the Gobi desert and fucking tall mountains. I could partake in a marathon if I wanted to. I would trip, stumble, and do my Captain Jack Sparrow walk for the first 1/4 mile and crawl the rest of the 25 plus miles. Not much fun, hell on the knees and not the best way to enjoy the scenery.

So now... since I have stopped fighting I am happier. That sounds so corny and a lot of people would say that it sounds a bit defeatist but the truth is they asked me to fight a battle I could not win. MS is not something I can overcome. It is with me for the rest of my life. It is my legs. It is the pain. It is the fatigue, the walk, the cane, the wheels, the handicapped parking short it is me. I can hate my life sometimes. I can yell and cry in frustration. I can remember the good ol'days with fondness but the truth is...this is me. And you know what, despite it all, I really like me.

I am a pacifist by nature. I refuse to fight...I just am. So next time I hear one bloody word about fighting the good fight I am going to punch whoever says it in the mouth.


Elizabeth McClung said...

I laughed at the last line - also the whole, "You look so healthy" - because I wasn't aware that everyone else knew what Stage X of condition Y is supposed to look like? Or is that just another inane statement. I keep fighting to remain myself, which as you point out so well, is the right to accept my limitations and disability and expect those around me to do so as well.

I get the "Don't give in.." all the time too - and my response is "You mean there is someone I can surrender to? Great! Where are they! I want give up! Let me join the opposition!" (the people who say the first statement find this less than humorous) - or When my particularly competant but rather stern care worker says, "Are you going to live through the night or am I going to have to slap you?" And I pretend to think and then say, "I'll take option C"

Good - I am glad you are fighting to be a person instead of whatever it is they want you to be (Can't 'they go hike a mountain or run a marathon...and leave you alone?)

Gary said...

I enjoy your writing. You write very well. I can relate to your situation. My niece has MS and is a 6th grade school teacher. She is having a tough time with it as far as "fighting" it.

Elizabeth McClung said...

Oh suck! I just realized I read your post like a week and a half ago and then it came out again as if I had thought it up myself. Crap! Oops, well they say that imitation is the best form of flattery and subconsciously, what you said here was resonating with me (and I was watching a lot of Batman Begins that day and think, "How come I can throw myself off buildings after saying dramatic statements.....oh yeah, cause I'm sick and don't do that stuff anymore"). to you in planting the seed which blossomed into what looks for at least one paragraph of my post today like....plagerism (but wasn't honest!).

ms bond said...

I am flattered! And Batman inspires me too. I love the man. Plus you gave me a new response and that is awesome. "I partake in a form of passive resistance when it comes to my condition" "MS just means my legs are resisting the power my brain has exercised over them after many years of oppression." "Think of infections as terrorist attacks against the body, my immune system as the resistance, and my rogue white blood cells as the elite resistance force." and when that fails..."I am resisting the urge to hurt you"