I think the hardest part of having this disease is how it has changed the way I see myself. I feel so broken down and old and tired that I can't imagine anyone would want to be a part of my life. My family disagrees. They think it is time I rejoin the human race and get over having MS. I know most people would not care that I have MS, but it is so hard to put yourself out there and risk running into the few that don't have 2 brain cells rubbing together and think you are contagious.
I have fallen into a cycle of anti-social-ness that I am struggling to get back out of. For the longest time I would not wear makeup or any clothes that might give someone the impression that I am a girl. And to this day I would rather caulk my bathtub than have to go out to a hip and happening place. I do not fit in at hip and happening places. My scene is the slow and sipping on a soda places. I frequent the library so much the people at the front desk know me and know that I didn't hurt my leg. I wanted to shave my head for a long time too. My husband, which I am now separated from and going through a divorce with, didn't want me to shave my head. I thought a mohawk would be very fitting for me. It says, "Stay away. I want to be unattractive and I don't want to tell you the minutest details of why I walk this way." But he was very accepting of some of my other anti-social tendencies so I figured I could compromise on this one issue. Besides, he works for Union Pacific RR and is gone about 60% of the time and he didn't care what I did when he was not home. And what I did when he was not home involved some beautiful wigs of the mullet variety and in a rainbow of colors.
I toyed with the idea of getting a big repulsive tattoo, because I knew many people are repelled by such things. I didn't do it and I am glad. Having a 10 year old, I don't want to be too out there for her sake. I am hopelessly uncool as it is and I didn't want to make it any worse. I used the term "chillaxing" one day and she was mortified. She said my saying it made it uncool. I know that to kids we are terminally uncool and know nothing, so I really didn't want to make her even more embarrassed of me. Don't get me wrong, I am thrilled that I am not cool to a 5th grader -- I am not aspiring to be cool to 5th graders, for some reason that is not a big priority for me -- but I do not want her to be ashamed of me, and that is where I have to draw the line.
I am having a really hard time putting myself out there again, but I am taking small steps towards overcoming this reluctance to join society again. It is a major breakthrough that I even want to try. For a long time I didn't think I would ever want to be recognized as of the humanoid family. It is hard and I get very insecure in public sometimes, but I keep reminding myself that I would not think someone lesser than human with the same problems as me, so I should give others the chance to show they are the same way. This has been a harder thing than I thought, I feel like a hermit crab without its shell -- but I suppose that is how it is supposed to feel.
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