One Dance: Millions Missing 2018

I was never a talented dancer, but I loved it.

I quit ballet lessons when I was in the 3rd grade because it was hard. I struggled to learn the simple choreography in school musical productions. I never learned to swing dance or czardas. When I did dance, I looked like that little girl in the Charlie Brown Christmas special. Even in my wildest dreams, I couldn’t dance to Beyonce like these women.

I made up for this lack of talent with enthusiasm. I didn’t clean my apartment; I dance-cleaned. I didn’t move to the beat; I shook my booty (when no one was watching).

Then I got sick with ME, and my last dance was at my wedding. I had been sick for more than a year by then, but the doctors were still telling me I would get better. I was not about to let this disease take my wedding away from me. So I danced with my husband (At Last) and my Dad (Sweet Baby James) and my Grandpa. I even danced with my friends, a little.

My husband and I celebrated our 22nd anniversary a little over a week ago. We haven’t once grooved to a beat or even slow danced in the kitchen in all that time. I couldn’t dance at my brother’s wedding, either. I couldn’t go to my Dad’s wedding reception, let alone dance at it.

Twenty-two years together, without a single dance.

My illness might have been preventable, but not by me. I could not have prevented it by using a condom or by avoiding under-cooked food. Wearing a seat belt would not have prevented my disability. Nor was it the inevitable result of a genetic defect or the typical aging process.

My disability was made possible by the failure of the scientific and medical systems to address this public health crisis. There has been grossly inadequate investment in research, and there is also a history of disinformation and stereotyping perpetuated in research and healthcare. This was true in the 1980s. It was true in the 1990s, when I got sick. And in the 2000s. And it is still true as we approach the end of the second decade of this century.

If you see ME, you are watching a disaster advancing before your eyes. It’s not a disaster because the powers that be are simply unaware of it; they know. And it’s not a disaster because ME is a difficult disease to unravel. After all, cancer is a difficult disease to unravel. What can we do about complicated problems? We invest the resources needed to solve them.

ME is an unsolved mystery because the biomedical research enterprise has consistently refused to invest the funding and expertise needed to figure it out.

NIH points out that it has nearly doubled its investment in ME research from 2016 to 2017. But even NIH has admitted that ME funding must be 10 to 20 times its current level. Compared to the need, NIH funding went from .04% 4% of the need in 2016 to .07% 7% of the need in 2017.* In other words, double of practically nothing is still practically nothing.

While NIH is waiting for a round of grateful applause from people with ME, it is the people with ME who suffer. We disappear from our lives; we struggle to get through each day; we lose careers and dreams and families. We die.

We miss our old lives. We miss big things like career milestones and family events. We miss mundane things, like driving or running errands or walking around the block. We miss the freedom that healthy abled people have to simply do whatever their bodies and minds want to do, without making themselves sick.

We miss being able to dance with our loves. Even just once in twenty-two years.

Today is a global day of protest by and for the Millions Missing. I am missing something that is both small and as unattainable as the sun.

Just one dance.

 

*Edited May 18, 2018 to correct mathematical errors.

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23 Responses to One Dance: Millions Missing 2018

  1. Anonymous says:

    “NIH points out that it has nearly doubled its investment in ME research from 2016 to 2017. But even NIH has admitted that ME funding must be 10 to 20 times its current level. Compared to the need, NIH funding went from .04% of the need in 2016 to .07% of the need in 2017. In other words, double of practically nothing is still practically nothing.”
    We need funding,
    we need concerted action,
    we need a strategic research plan,
    we need all of this and more
    in a timeframe that is meaningful to patients!
    That timeframe (belatedly) starts NOW!

  2. Jenny,

    I miss dancing in my kitchen SO much. Just me and the music, and stop if someone is watching.

    I gave what was left of it to a character in my book. She has ME/CFS, but can still dance a bit – as I used to.

    But it’s all gone now.

    And I try not to waste anger on those people who should have made me better by now, if not well, but I AM angry at them, and their current PITIFUL efforts. Shame on them.

    With a new ‘answer’ coming out every day, maybe the solution isn’t EASY, but it’s got to be there. We’re the modern zombies – living dead.

  3. Amy D. says:

    Brilliant, Jennie. Thank you.

  4. Chris Heppner says:

    A lovely post, Jennie, despite the sad content. Have a good ME day, one way or another, anyway.

  5. Elisabeth N says:

    Your story is my story. . .
    Thanks for telling it.

  6. Nancy Sadja says:

    Oh Jennie, I laughed, I cried and am filled with rage at the same time. I used to dance-cook/bake. Now even off-key bad singing is beyond me. What’s so unfathomable and infuriating is the sense that no one in the medical community really gives a f**k.
    Thank you so much for giving us a voice. I hope we get a chance to dance again.

  7. Joyce says:

    Yes Jennie. You hit a cord. I too miss dancing in warm summer evenings, getting sweaty and out of breath. Washing cool water over my face. Feeling invigorated and happy and doing more.

    Have a wonderful day everyone.

  8. Pingback: Boosting Jennie Spotila’s post on dancing | liebjabberings

  9. Helen Sander says:

    As always, Jennie, you have hit the nail right on the head. Concise, moving and oh so true! Much love to you.

  10. Christine Williams says:

    Jenny,
    Thank you for your beautiful words and for all you do for the ME/CFS community. We are all indebted to you for your ability to understand and synthesize this complex disease and research/political space.

  11. Helen Donovan says:

    Thank you so much for your message to all who will read it
    My son has had ME for 25 years and has now been bedridden for over two and a half years
    I nurse him full time now He was the person who’s own FOI opened up the PACE Trial findings in the U.K.
    It’s people like you who keep reminding the world how tragic ME is with your well written story Keep up the good work
    Kind thoughts all the way from Australia

  12. Linda says:

    Even though I am bedridden most of the time now, I can still dance and sing a little in the shower. It’s such a gift, as it is a struggle just to get into the shower! But what I would give to be able to run basic errands… Thanks as always Jenny for your poignant message.

  13. Kathy D. says:

    I understand completely. I’d like to dance. I’d like to listen to music but I forget or else it gives me headaches, the noise. But I love music, grew up with it, developed my own taste. Used to listen all the time.

  14. blessed says:

    Hi Jennie, I miss dancing too😥. I’ll be celebrating my 66th birthday and thank God for what I am able to do with this illness. My husband and I were great salsa dancers and as we say in Puerto Rico, “we even danced to the commercials!” Thank you for sharing your outragevwith the medical community. I share that frustration. Let’s keep our hearts as difficult as it is on the small joys and blessings. We are still valuable to ourselves, others and the world.
    Blessings and gentle hugs, Jennie Salgado

  15. Belinda says:

    22 years together, without a single dance.

    Such a poignant statement, that the healthy, able-bodied can not imagine. I shed tears reading your piece. I too, was one who loved to dance….

    Congrats on your 22 years together. Both my spouse and I have M.E…..you and I have communicated before on the challenges of our “double whammy”. We thank you from the bottom of our once dancing hearts for all that you do for the ME/CFS community.
    Best to you and your husband.

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