These days I dream of walking through hallways, up steps, and down city streets. Every night for months my mind has built dream narratives around searching for my wheelchair, feeling ashamed in the familiar way one feels ashamed during dreams of appearing naked in front of an audience. In these dreams, I walk easily from place to place searching and believing with all my heart that I have been exposed as a fraud, as a fully ambulatory person who somehow desires rather than needs the chair.  A friend theorizes that these dreams might be about integrating my wheelchair into my sense of self, about developing a relationship between my body and my chair. I suspect that his theory is partially correct, but these dreams also seem to be about the shame that resides at their center, about the exposure of emotional weaknesses I am deeply reticent to admit.

I am ashamed of the callowness of my initial feelings about the people I encountered in my neurologist’s waiting room. Right after my MS diagnosis I went for my first “follow-up” appointment. I knew that MS has an idiosyncratic disease progression, that the level and type of disability that each of us experiences is not necessarily the same as the level and type of disability others with MS experience.  At a time when I should have had feelings of camaraderie with others in that waiting room I used my knowledge of the idiosyncratic nature of MS progression to distance myself from them. I tried desperately to convince myself that my disease course would be less aggressive, that while I might walk with a cane or have a tendency to stumble, the sheer force of my will would keep me from needing  a walker or wheelchair, that I would always be pretty damn close to able-bodied. I was sure that the people in that room who used walkers or wheelchairs—and even those who simply walked with pronounced limps—had diseases other than MS or forms of MS completely unlike my own. I told myself that I felt compassion for them and their disabilities, and that pretense somehow convinced me that I had license to “other” them, to see myself as unlikely to ever be as disabled as they clearly were.

Every time it became clear that I needed “the next” mobility aid – a cane, then a walker, and now a power chair – I resisted, telling myself that these devices were meant for people other than myself. I came to realize that unbeknownst to me, I had spent my life working hard to move unnoticed through physical space. Among friends I laughed and talked with fervor and gusto, but I had developed an absolute dependence upon maintaining as much physical silence as possible. Though I would fight to the death for others’ right to take up space, to need physical room and accommodation, I loathed the thought of needing space and accommodation of my own. I was, I admit, a bigot, having distanced myself from the disabled other. My penance: my body has become what I once feared. Now when I enter my neurologist’s waiting room I am pretty certain that someone there sees me and thinks, “That’s what scares me. I can’t become her.”

18 thoughts on “I Can’t Become Her
  1. I think we all feel some of the, “I’m never going to be like them,” in our lives.
    Love it!!

  2. Michelle, you are educating me again! Thanks!

  3. Wow, you write as if you’ve crawled inside my head and exposed all my secret thoughts. I feel like a fraud when I use my cane one day and the next I’m walking fine – or at least my definition of ‘fine’. I work hard at being as mobile as the next person, but I’m betting that person doesn’t go home and collapse from the sheer effort of maintaining such pretense. When will I just give up my delusion of ‘normal me’? Or when will I learn to redefine ‘normal me’?

    • Thank you for your next blog! As Dee said above, I feel very similar and know I am that person that tries to convince myself that I will be fine. Take my meds, injections etc. and I’ll be just fine with my current stage and go about my business. I won’t end up like those others Iam sitting next to in the waiting room. Yes, I’ll go with that…. for now.
      Hang in there! Hugs!

      • Thanks for reading, Nancy. It means a lot to know that what I write strikes a cord with other PwMS. Thinking of you.

    • Dee, I think that the “cost”–the going home to collapse from the sheer effort functioning–is the hardest thing to communicate sometimes.

  4. Thanks for your comments, everyone! I am so glad to be able to connect with you all this way.

  5. I was very personally touched by what you have written and saw myself in it, beyond anything I could have imagined. Thank you!

  6. You are absolutely eloquent and are voicing my thoughts, my experiences so perfectly. A book needs to be made!
    I never , ever thought thatt perhaps other MS’ers might not like the sight of me until I had the experience of being in the same room with another woman with MS who could still walk. She did not know I have MS but I was aware of hers because she was talking about it.She expressed that she couldn’t look at someone in a made me feel awful.I delayed going to any support group, worrying that my presence might upset people less far along than me. I dn’t want to scare anybody…I completely understand your feelings!

    • six, I am so sorry she said that to you. From what I know of you and your kindness, I cannot imagine how you could frighten anyone. I appreciate your positive responses to my posts.

  7. Great post, insightful, and eloquently stated. Those of us who have experienced the long march of progression have all gone through the unfortunate metamorphosis you describe, at first denying our fellowship with more progressed patients, only to soon enough become one of them. I used to glance at wheelchair reliant folks in the waiting room with fearful eyes, now I see less disabled patients glancing at me, through eyes that look heartbreakingly familiar.

    Glad you’ve joined the MS blogging world. Something tells me your voice will be heard…

    • Thanks for your welcome! I consider this very high praise, since I put off blogging for a long time while I considered whether I had anything to say that you were not already saying–and saying better than I ever could.

  8. You are right on the mark.
    There is something to be said for putting off that progression from one mobility aid to another. We fight this this on many levels, and to me, trying to keep hold of whatever abilites we have as long as possible is very important.
    However, that said, it is also important to save what you have for what is important. I can get around with just my cane, but I will jump into a wheelchair if it means I can conserve my energy for the things I decide are more important!

  9. I agree completely, James. I used to take lots of pride in “getting there” (wherever there was) with the least “help” possible. One day, though, I realized that getting there, then retreating into a corner because I had too little energy to actually be there was foolish.

  10. I am so glad to have found you at Marc’s WK blog. Your posts are eloquent and honest. You have a new follower.

  11. Thanks, Judy. Glad to hear it! And I have really enjoyed your poetry.

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