Progession Brings Fear, Of Course

It’s been awhile since I’ve written a post.  I’ll tell you why later. 

I’ve been thinking about skipping.  You know the way someone skips up a flight of stairs; not shallow, steep stairs, but deep ones that stretch out long to each side.  Maybe eight, or perhaps, ten stairs.  Like the kind that lead up to a large building; a courthouse or maybe a museum.  I passed such a building a few weeks ago and watched as a woman, obviously in a rush, moved up those stairs with such a lightness that I caught my breath.  Her legs moved in easy, snappy rhythm and each foot lifted in precise measure, finding its place back on the stair with quick sureness.  She had a bag slung over one shoulder and carried another bag loosely in one hand.  She never seemed to look down, her eyes focused on her destination at the top of the stairs.  I moved on, gripping my cane, struck with a longing, remembering when I, too, moved through my world with ease and grace.

And then I waited at the next corner for the traffic light to turn green.  A man rolled up beside me, his wheelchair grazing my leg.  We waited together, he and I, separating when the green moved us along. 

So this is my struggle:  I feel a sense of shame when I dwell on what I can no longer do instead of celebrating what I still can do.  I long for my body to be well, allowing me to live as freely as I did before.  And then, when I see someone who moves with less ease than myself, I am grateful to be as well as I am. I know how bad MS can get.  I know that my RRMS affords me freedoms that PPMS does not.   How do fear and gratefulness cohabit?  How does one find peace with these two powerful  realities standing side by side?

Since progression began in my RRMS, a dreadful fear seems to permeate everything. Even if a plateau occurs, a bargaining process begins:  “OK, I can live with this.  If it gets no worse than this, I’ll be just fine.  This I can deal with.”  I’m not sure who I’m bargaining with, but I feel compelled to put the words out there.  I just want to find some stillness.  A way to ease the fear.

I think that I haven’t written lately because I felt consumed by MS-thinking that goes along with writing the blog.  I didn’t want to think about the disease all the time.  And then…..I realized that I am thinking about it most of the time anyway.  So, here I am again.  Thinking and writing.

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4 Responses to Progession Brings Fear, Of Course

  1. Welcome back. Trying to understand what you are going through, it feels too big for me to being to grasp, but there are small ways in which I can relate to some of your questions, mostly in parallel to my grieving process for my mother (as you grieve for your former life and bodily capacity, I suppose). I too try find the balance between being grateful (for the time I had with her, for all she gave me, and much more), and allowing myself to simply mourn what I have lost. I think that as long as your remain aware of the importance of both you will keep a balance that works for you. The other is blogging – I began blogging about grieving, but tried to give myself space to write about other things as well – from cooking to the joy of Autumn. Maybe you can give yourself space to write about other things too, weaving in and out of wherever your head and heart are at, either within this blog or in a second one? Your strength and honesty astound me again. Sending you a hug.

    • writingms says:

      Good to hear from you Laurel. And your ways of understanding loss are not small – the loss of a mother is a very particular loss. For you, the shock involved in hearing of your mother’s death must add a whole other dimension. Perhaps loss is universal in its impact, which allows us to empathize with each other, but unique in its manifestation. Thank you for writing. I’m sending you a hug right back.

  2. Judy says:

    The same push-pull you mention here about writing about MS is one I have always felt. I started the blog so I could “talk” about it and not bore or frighten those in my real life. So I was quite clear from the beginning that this was a blog mostly about living with MS. It was my outlet so that I could focus the rest of my life, to the extent made possible by my neurological deficits, on something other than MS. In other words, it has been my safety valve. It has made it possible for the rest of my life not to implode from keeping my MS thoughts/fears bottled in. Those who stop by my blog do so because they want to read about living with MS. So, unapologetically, I write about MS in that forum. It is not, however, my entire life. I have plenty of other places where I can talk about anything but MS. If I get together with friends or family, I can now just focus on something as banal as the weather, and not about how it affects my MS. If I want to talk about that, I go to my blog.

    • writingms says:

      Thank you Judy. A good friend asked me the other day why I do not talk about my MS. I was surprised to hear myiself say that my blog is my talking place. Before writing the blog, my answer would have been that “it’s just not something that I want to spend a lot of time talking about.” Like you, Judy, I did not want to spend my time with friends and family talking about my MS. I did not want to add to their concern about me. And I did not want to ‘wear them out’ — did not want them to feel that the MS always had to be addressed. Because I chose not to talk about it, it gave room to have conversations about everything else, which was lovely for me. But just a few months ago, one of my wonderful nieces, gifted with sharp insight, suggested to me that I begin writing an MS blog. And in doing so, I have realized the importance of speaking my own truths, whether someone is listening or not. Thank you Judy for reminding me that my blog is somewhere that I can openly express without the need to feel apologetic for focusing on my experience with MS.

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