Ten Years of Unreal Time

Ten years ago today, I tapped the internet microphone and published the very first post on this blog, then known as Occupy CFS. My intention was to step into the light, to bring attention to the disease by writing openly about my own experiences, as well as the politics of our movement. Hundreds of posts later, I can say that I have done my utmost to achieve that goal.

There is something odd about the passage of so much time, though. Since the pandemic began, people have joked that time has no real meaning any more, but I have felt that way for more than a decade. I have few exterior milestones to mark time–no job changes or growing children. Where I live, late fall through early spring looks exactly the same when viewed through a window. Sometimes, I can’t remember what month it is.

Ten years feels like an interminable and unchanging tunnel of days, each one like the one before and the one after. Living housebound with chronic illness is a grind, and it has worn me down, much the way that centuries of footsteps wear down the stone steps of a cathedral. Yet so much has happened in the last ten years that it also feels like the time has passed in a few blinks. I’m always a tiny bit surprised when I remember my age–how did that happen?

If I had made predictions ten years ago, I would have said that I would still be sick today and that ME would still be grossly under-recognized and underfunded. Those outcomes were easy to anticipate and have proven true. Other predictions would have been wildly off base. Ten years ago, I had no intention of writing a memoir. I never could have guessed that my husband would become disabled, too, nor the ways that grief and loss would change my life.

I have always been a self-starting, goal-oriented person. I don’t wait to see what happens; I chase desired outcomes. This blog and my advocacy are a manifestation of my drive and determination, and I have pursued both at great personal cost. What’s odd about where I am now is that I don’t have much of a plan. I’m working as much as possible on my book, but I don’t know if it will ever see the light of day or how I can make that happen. I can’t begin to guess what might happen in my life or in ME advocacy over the next ten years.

Pierre Teilhard de Chardin wrote a beautiful poem called Patient Trust that captures this feeling I have of being in between:

We are quite naturally impatient in everything
to reach the end without delay.
We should like to skip the intermediate stages.
We are impatient of being on the way to something
unknown, something new.
And yet it is the law of all progress
that it is made by passing through
some stages of instability–
and that it may take a very long time.

ME advocacy has been irrevocably changed by the pandemic and Long COVID. Perhaps we are closer to treatments, or at least greater research investment. It is too early to say. And perhaps I will finish my book. Perhaps you will read it. It is too early to say. Progress takes time.

I didn’t start this blog with an end goal or timeline in mind. I just wanted to speak loud enough to be heard so that I could make a contribution to our fight, and I hope I have succeeded. As much as we have accomplished in the last ten years, there is more work to do. I’m here for it, for as long as it takes–even if I’m not quite sure what that will look like.

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20 Responses to Ten Years of Unreal Time

  1. Christine Williams says:

    Jennie: Thank you for all you do for the patient community. I admire your tenacity, persistence and your ability to analyze the complex issues surrounding CFS/ME. I got sick in 2008 at age 56 so was near the end of my professional career. I then spent 7 years on the board of Solve but then I felt I needed to step back for my own health. I recently went through a divorce from my husband of 27 years and I believe my illness was one factor that led to the end of our marriage. Please take care of yourself.

    Chris Williams

    • Jennie Spotila says:

      Chris, I am so sorry to hear of your divorce. I hope that you are finding comfort during what must be a difficult time.

  2. LJ says:

    This is a good introduction to your ME TEN book! Publish!!!

  3. Amy says:

    The poem reminds me of Letter #8 from Rainer Maria Rilke’s “Letter to a Young Poet,” in which Rilke writes about growth and change emerging from sadness. The text can be found here: https://www.thereader.org.uk/wp-content/uploads/2021/02/Rilke-Rainer-Maria-Letters-to-a-Young-Poet-Letter-8.pdf. I can’t wait to read your book!

  4. Rivka says:



    You and your blog have helped sustain me, helped me to live w this illness. Thank you for spending your minimal and precious energy on it.

    So glad you are writing a book! The world needs to hear your voice.


  5. Sharon Myck says:

    Thank you Jenny for your years and energy devoted to this blog. You words of wisdom and the poem you shared are all so true. I began this journey over 50 years ago, but the last 10 have been the hardest and most disabling. We can only have hope that we can carry on with our lives as best we can. You are an inspiration.

    • Jennie Spotila says:

      I am so sorry that you have been sick for so long! You are right that we can only carry on. Thank you for being part of the journey.

  6. Amy says:

    Jennie, your blog has spoken loudly and been heard by so many. You have sacrificed to do this work and the community is stronger for it.


  7. Amy Divine says:

    You are such a gift to this community and to me personally. Thanks so very much for all that you do. ❤️

  8. Lisa M. Zaret says:

    I would love to read your book! Thanks for sharing!

  9. Anne says:

    Thank you Jennie for writing, for sharing your research, for sharing your thoughts. This is a lonely disease and you make it a little less lonely. Thank you friend.

  10. Sam Pearce says:

    Dearest Jennie, Your blog has been – and is – so vital to so many of us living in the shadowlands where it can take two weeks to register an email notification of a blog post… Your discourse on the meaningless of time resonates so much, especially as I’m also battling harder than ever to write ‘the book’. Every day, writing during my one capable hour is my goal but right now it’s a miracle if I manage a paragraph. And high summer is my peak! Eeek, I can’t bear to consider the slide ahead into winter. Wishing you strength and solidarity in the Sisyphean struggle – onwards and upwards!

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