I’m not the MS guy

cropped-avatar200.jpegMany years ago, my daughter had a heart transplant – a sudden and at times terrifying journey. It all worked out remarkably well, better than we dared hope. After her surgery, I thought it might be a good idea to have her sit with a therapist to talk about any emotional issues she might be struggling with. In the end, she didn’t really understand what she was doing there, and the take-away was that she didn’t want to be The Heart Transplant Girl. She just wanted to be like everyone else.

In much the same way, I don’t want to be The MS Guy. Multiple sclerosis persists intruding in my everyday, so there is only so far away from it I can get. But my inbox is filled with updates and newsletters and new blog posts and comments from various forums I participate in. I feel somehow obligated to read it all, as if it is a responsibility, part of taking care of myself. I could spend every minute of the day reading the latest, and following links, and investigating new ideas and therapies. I feel pulled to be an advocate for MS, for disability issues, and as a member to The Disabled Community. And on and on. I wind up not only dealing with my own MS body and brain, but I border on obsessing about MS outside of myself. As if I don’t want to miss any tid-bit of important news. It gets overwhelming. To the point where it begins to crowd out other things I’d like to be thinking about.

So although I’ll never be able to forget that I have MS (the MonSter), I try to find ways to move it at least to a side burner on the stove, if not a back burner. And perhaps for a little while each day, to not be The MS Guy.

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2 thoughts on “I’m not the MS guy

  1. We get to define ourselves. No matter how others see us, and even want to label or define us, anyone, any individual, has the power and right to step outside a label. That is a form of activism. How we choose to see ourselves is a most powerful act. Others see what we present, what we focus on and we are all changed in the process.

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