Missing, Not Marching

I should be marching right now.

I mean, I had my plans all worked out. #MillionsMissing tshirt? Check. Wheelchair wheels freshly pumped up? Check. Water and food? Check. Ride to March? Check. Kick ass awesome sign made by my husband? Check.








But here is what the weather is doing right now:








It’s 50-some degrees and raining.

For those of you who have not had the pleasure of sitting in a wheelchair in the rain, you can role play it. Go sit in your yard, preferably in the shade with spring-like temperatures. Have someone sprinkle you with water from the garden hose. For an hour. You are wetter than usual, because more of your body is exposed to rain while you are sitting. You are chillier too, because you are not walking around and keeping warm. Now imagine that water spitting off your wheelchair wheels is soaking your legs. Rain is running down your back. The people around you are shedding rain in your lap. Oh, and your wheelchair might slide a bit on rainy streets.

So I decided not to go. This seemed like the adult decision, paying proper attention to self care and all that. Then I watched the photos start rolling in on Twitter. I started crying when I saw this one:

I began to lay the heaviest guilt trip on myself. It went something like this: “You told people you were going to march. You arranged everything. You offered to put the names of other people with ME on your sign. You asked for input on what your sign should say. Now you’re dropping out. A little rain, and you wimp out. You could have done it. It’s just rain. So what if you get cold and wet. It won’t kill you. You should go. You are a disappointment. You are a coward. You’re a jerk.”

There was a small corner of my brain that was emotionally detached enough to start marveling at this monologue. Was I really talking to myself that way? Yes. Would I speak to anyone else that way? Of course not. Do I believe all those things about myself? Well . . . yeah, I am a disappointment. Really? Well . . . .

I sat with these thoughts for awhile. Did I really think I was a disappointment to anyone for choosing not to roll and sit in the rain? Was it my fault? Ah, there it is. Fault. It is not my fault it rained. And it is not my fault that I could only go to the march in a wheelchair. It really isn’t. But I tell myself that I am the disappointment, because if this is my fault then I have control over it. And I like control.

But control is an illusion. I am sick. I am disabled. I need a wheelchair if an event involves more than a couple blocks of walking or more than a few minutes of standing. Attending the March for Science on a dry sunny day would be a hardship. I would be sicker afterwards, under the best of circumstances. If I were sitting out in the chilly rain, my pain would spike to a level uncontrollable by my medication. And this would set off a physiological cascade that would exacerbate all of my symptoms.

That’s science talk for “I would feel like shit.”

I support science 100%. My family is filled with scientists. My health is very much dependent on science. A lack of science  – especially research on ME – has confined me to that wheelchair. And the wheelchair combined with bad weather prevented me from being able to publicly show my support for science and scientists.

But my beloved city turned out, along with cities all over the world. From where I sit, science matters. It matters very much, indeed.

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31 Responses to Missing, Not Marching

  1. ahimsa says:

    Jennie, I’ve been dealing with family issues the last couple of days but I took a break to come online today to look at news about today’s science march.

    I completely understand the feeling of letting others down as well as that tendency to beat myself up. But sometimes things happen.

    I’m so sorry that you had to miss the march but this was a great entry. I loved what you wrote and all the images, links, tweets, etc. I’m not “braining” well today but I hope this conveys my appreciation. 🙂

    Take care of yourself.

    • Jennie Spotila says:

      Thank you so much! It was surprisingly helpful to write it down and admit my guilt trip publicly. I learned a lot today.

  2. Laurie P says:

    Jennie, you and your husband did a great job! As someone whose name is on the back of the sign, I don’t want you to feel like shit for me. You did the strong thing and are taking care of yourself, which is the most important thing to do.

    • Jennie Spotila says:

      Thank you, Laurie. It occurred to me (after I posted and while I was watching the rain) that I would NEVER expect someone who had the flu (or even a cold) to go sit in the rain! How ridiculous that I felt guilty for not putting my own flu like-feeling body out there.

  3. Dearest Jennie:

    You would be there IF YOU COULD. You can’t. Guilt won’t change that.

    Please cut yourself some slack. What got a kick in the teeth were your expectations of how good it would feel to contribute to the march. Yes, it would. You would tell yourself that as you suffered through the cost for the days after the march.

    Just don’t create the same amount of suffering and aftermath from the guilt – that would really defeat the GOOD DECISION you made of not going.

    We’ve been lucky that so many people have been able to march for so many things this year; the luck had to fail somewhere. And 20K is a great number. Even if you couldn’t be there today.

    You said it yourself: you would never hold someone else to the same expectations. Doing that to yourself is saying you are BETTER than everyone else (which you are – in many ways), but it is a form of hubris, and that’s not good for you.

    I don’t allow myself to cry – I pay for it too much. But if you can cry, do it a little for the lost opportunity, and remind yourself we’re in this for a much longer haul, and you will be here until we’re all well, regardless of the individual days you may have to miss.

    A wheelchair is an additional challenge: today’s weather didn’t allow that. Hope the next one will.

    Sending love and peace and gentle hugs. Alicia

    • Jennie Spotila says:

      Oh Alicia, you are so right. Holding myself to a standard that I would not impose on someone else is total hubris! How awful! Thank you for the reminder.

  4. Gill B says:

    Thank you for all the thought you put into this Jennie. Thinking matters and you do plenty of thinking for ME.

    I think by your decision you helped me learn a lesson today- to give myself a break. We MEers are not very good at that.

    I loved seeing my name on the sign. Rest well.

  5. Gail says:

    Last December I REALLY wanted to go to the electoral college demos near me. Multiple layers of import, personal and political. Having learned from years with ME I decided to experiment. The day before, I went outside amma say in my wheelchair (similar weather as expected the net day) wrapped in a sleeping bag and wearing my parka and warm clothes. Set my clock for an hour, since the demo wild include 2 hours of riding in a car, & 3 hours outside.

    Before the hour, I could tell my system was being impacted, but not how severely. I had believed that I would be able to extrapolate the level of impact, assuming three would be more by a factor of at least two after each hour.

    Although my hands and feet never were terribly cold, my core seemed to send all my hear to them. I was like an ice cube with arms and legs. 5 days later, I still wasn’t warm. It caused a huge “dip in form” (aka exacerbation), and I realized I had put myself in danger, caused myself harm, by even trying.

    ME is a life threatening condition that is wildly misunderstood. I couldn’t look up potential impact online, or call a doctor and ask. We experiment on ourselves ALL the time, trying to survive and have meaningful interactions.

    Right now it feels like the planet is under siege, and it is. But we are vulnerable in a way that no matter how much we want to be there, the risk is huge. I hate not being able to show up. Like you, I want to try whenever possible.

  6. BD says:

    You’ve just lived out, in public, one of the (many) tough aspects of this illness. There are things we want to do, things our heart is invested in, things we promise to do–and then…something happens. Some surprise that changes the circumstances. Bless you for not going. Bless you for writing this post. All of us live this reality in so many ways. I am so glad you opted to protect your health and that you chose to express that inner conflict, and the attendant guilt and disappointment that goes with it. I was once told that guilt is a combination of anger and fear, and that if you can articulate the anger and, separately, the fear, the guilt is rendered powerless. Continue to take care of yourself–

  7. Jennie,

    Your honesty about the mental gymnastics you went through today made all of us who had to stay home feel better. Thank you from the bottom of my heart.

    Science Matters AND Jennie Matters, so I’m glad you stayed home rather than force yourself to do something that was beyond what you could reasonably do.

  8. Steve Hawkins says:

    You do a great job Jennie: part of which teaches people not to overdo things when they have M.E.

    No harm in taking your own medicine! 🙂

    And thanks for including me on your sign. (y) (y)

  9. Janet Dafoe says:

    You do SO MUCH for this community! I know you’re disappointed you couldn’t march. Like all the other things that are disappointing for you. Myriads of things. But I want you to know from the bottom of my heart, and from Ron’s, that we really appreciate what you do, and that you make an incredible difference in all the things you do, and that you made a difference just in all your posts preparing to march. And in this post. It’s heart wrenching. But you are one of our hero’s and we really really hope you feel proud and good about what you do for us!
    With love,

    • Jennie Spotila says:

      Thank you, Janet and Ron, for your support and kind words! I do feel good about what I’m able to do for the cause – I just wish (always) I could do more.

  10. Kellie Nicholson says:

    There is never a need to apologize or feel guilt. You have done more than could be expected. You are a hero, a warrior, a force. There will be another march, another time to carry on with your mission. Rest and rejuvenate for the next time.

    The signs are great and they will be used. Thank you.

  11. sofia says:

    Dear Jennie , when I was reading your beautiful post , and I started to cry. I’ve cried because it felt like it’s about me . I’m dealing with this situation on a daily basis . I almost
    do not get up from bed , and when I get up , my brain stop working and the pain is unbearable . It’s impossible for me to plan anything , not a vacation nor family events . I’m writing this , because you should not feel guilty . You are a hero , and you are doing a tremendous job . Thank you ! Thank you ! Thank you ! Feel better . OX

    • Jennie Spotila says:

      Thank you, Sofia. We are so hard on ourselves. I am glad the post made you feel seen and heard. And I hope you feel as well as possible today.

  12. Melee says:

    Oh Jennie – You are so fortunate – I just looked up this s0-called science march, and am just now learning it is a nefarious political sabotage of true science by far left progressive liberals. Moreover, it was a misguided and abhorrent attempt to recreate the repugnant women’s march earlier this year.

    To insert M.E./C.F.S. into the rabid left political agenda – to associate our illness with such abominably unscientific concepts such as human global warming, and the Marxist concept Earth Day represents – would truly be a disservice to everyone with this disease. Even Barack Obama had this to say today: “it is a march with no end-goal other than ‘science against Trump’ and is a political force that is dangerous.”

    God’s Will surely intervened today and sent the rain to keep you home. ME, and all of us suffering from this incurable, untreatable, debilitating disease, should be grateful. I know I am. We with this illness are much better served by prayer to our Creator and Savior, Jesus Christ, than we are in aligning ourselves with political madness. This disease is already politicized enough, without our muddying up the waters by inserting our disease further into the mire.

    Having said that, your epiphany about blame and fault is a wonderful lesson for all of us.

    God bless us all, and Godspeed to all the real life researchers and scientists who are truly working for our cause (Drs Peterson, Davis, Naviaux, Lipkin, Armstrong, Montoya, Bell, Klimas, Cheney, DeMerlier, Hornig, Fluge, Mella – we know who they are, and pray for them all!).

    • Jennie Spotila says:

      I disagree with almost everything you said in your comment, but I do appreciate the calm tone with which you spoke.

  13. Nancy Blake says:

    Jennie, I write as someone who has immense respect for the work you do for PWME.

    Your RFA ticker is an invaluable resource to keep us aware of the divergence between what Collins & co say, and what they do. I am sure that this is a real effort for you, and risks your health.

    We need to be realistic about the balance of effort and effect. You are allowed to be sensible about the balance between the effort of doing the ticker, and the value of it, versus the cost to your health of being just one member of a crowd do a demo that plenty of others are doing, and that will have very little effect on the people who could influence events. Practically speaking, we, as a community, need you much more as a person able to do the work you are doing that no one else has the expertise or the determination to do. The RFA ticker is there for us all to take note of and make use of.

    People with ME are very often committed to physical exercise in some form, or involved in a very physically demanding life-style (taking care of young children, or elderly or disabled family members). Exertion, finally, has been recognised, not just by Ramsay, but by the IOM, and I’m glad about that—it surely must wipe out GET. I hope it will lead to recognition of complete rest as the first treatment recommendation.


    But, as your post, and the comments above, and many, many Facebook comments show, PWME are very prone to having unreasonably high standards for themselves and to high levels of inappropriate guilt and self-criticism, and this makes it extremely difficult to adopt the energy-conserving life-style needed to have any chance of recovery.


    Kudos to the commentator who suggests that we consider whether we would speak to anyone else in the way that we speak to ourselves. It isn’t easy to look upon ourselves in the way that we would look upon anyone else who was in the same state. It isn’t easy to learn to extend kindness, understanding, charity and courtesy to that sick person. (!)


    On the march itself—I find the remarks of one commentator a bit confusing, but in terms of the power that Wesseley holds over the UK media (which never even report on the Invest in ME Conference, an annual gathering of international experts on ME/CFS held in London annually for the past 12 years). These two articles by George Monbiot, although not recent, helped me to understand that. Monbiot does not refer to Wessely and the medical insurance industry, but those connections are well documented by Professor Hooper and others. Wessely is a central figure in the Science Media Centre, and looking up the articles they have commented on (and the ones they haven’t!) explains why the UK media are saturated with disinformation about ME/CFS. These waters are very dark indeed.



    I had to warn ‘Sense About Science’ in the U.S. about ‘Sense Abut Science’ in the UK. Ben Goldacre, a commentator on Bad Science, and a leader in the campaign called ‘AllTrials’, which is about getting pharmecetical companies to report on negative as well as positive trials, refuses to criticise PACE, and is himself linked to Wessely. He is involved in the UK ‘Sense About Science’ movement.

    So maybe there is some truth in questions to be asked about this movement…I don’t have enough information to comment, but it sounds like your energy was well conserved. Science has not, so far, shown any willingness to help us.

    My current opinion is that patients are best keeping away from their doctors, as effective treatments are not yet available, and you risk getting a psychiactric diagnosis and dangerous treatment (GET).

    As a movement, it seems to me we should stay away from efforts to get the NIH to change its ways, and concentrate on raising our own funding for researchers who are really trying to help … which is mostly funded by us anyhow.

    And maybe let our healthy helpers do the heavy lifting to do with demonstrations!!

    • Melee says:

      ME/CFS victims, of all people, should understand – viscerally – the most dangerous words ever uttered: “We’re from the government and we’re here to help you.”
      The government – Establishment politicians – created Earth Day, and they are wolves in sheep’s clothing who seek to do harm through false undertakings.

      Nancy, you’re on the right track, and thank you for the educational ME/CFS links. In fact, one of your links should be enough to make all PWME repellant to the idea of participation in the governmental construct of Earth Day (http://www.positivehealth.com/article/cfs-me/me-cfs-redefining-rest-and-learning-to-be-a-psychopath):

      -The medical examiner who performed and reported the SCIENTIFIC FACTS on Sophia Mirza’s second autopsy lost his livelihood in the UK: FOREVER.
      -Simon Wesseley “delivered [a speech] to a group of doctors and representatives of medical insurers, on the subject of ME/CFS . . . Wesseley was such an accomplished comedian that his impersonation of ME/CFS patients had the audience in paroxysms of laughter. The following day, every ME/CFS patient in British Columbia received notification that their disability payments were cancelled.”
      -The government’s covert usage of language in recent DSM 5 entries to compromise PWME and help sabotage real efforts to scientifically help us.

      Yes, we all know about Lynn Gilderdale’s and Justina Pelletier’s tales of horror. It is well known that NICE is a death squad, and not a watchdog. PWME know that the world government absolutely refuses to utilize useful, meaningful ME/CFS criteria. We know about SMILE, FITNET, MEGA, MAGENTA, PACE – we know about Wesseley, Chalding, White, Crawley, Miller, Sikand, Wallitt, Gill, Shorter, Saligan, Strauss, Reeves, Fauci, Holmes, and the rest of the vile minions who work with dogged determination to obstruct and obstruct scientific ME/CFS advancement.

      Earth Day’s history, on its face, appears to be a special day to celebrate conservation. Frustrated groups crave to be heard by their government, and so full of hope and naivete they imprudently throw in with the rest of the misinformed and dis-informed mobs, causing even more damage to the cause they represent, and to themselves. In reality, Earth Day is rooted in a foundation of paganism and radical socialist values designed to obstruct individualism. The militant progressive agenda utilizes the day to promote big government and a more Godless, idolatrous society. Hence, we have a confused, brainwashed misguided population marching for nonsensical issues, non-issues, and the death of liberty. It’s all so flowery and positive and the government smiles and lies to our faces and says they’re going to save the water and the air, and the human race, but It isn’t true. And so, Earth Day is mislabeled – the nomenclature should be Death Day.

      The truth is that the radical environmentalists – the Green Movement – is really just the old Red Movement: a radical left-wing movement. And their policies are deadly. Policies such as the CAFE standards, socialized medicine, and so-called bio-fuels. For the Democrats, this is their religion: they’re zealots. For the Republicans, this is business. The US Chamber of Commerce will never support the end of ethanol subsidies. SCIENCE has proven that the ethanol process is environmentally detrimental. But for the Establishment, facts don’t matter, and they subvert language to brainwash the masses, as they increase their efforts for global utopia. If the facts work, great. If they don’t, who cares: this is the World Government’s position, and the third estate empowers them.

      It is the Establishment who plotted to undermine our disease and pervert the name of it so we would be stigmatized from every segment of society; even the sickest of the sick don’t accept our disease as legitimate because of the World Government position on our illness, and their wicked perversion of science.

      No, fellow PWME who are suffering in isolation and hovering in near-death circumstances, there is no SCIENCE to be found in the concept of Earth Day and the March For Science. They are purely political socialist constructs we should work tirelessly to dissociate ourselves from. The CIHR, NHS, CDC, NIH, HHS are not here to help PWME. Their every purported effort to help us is intentionally and relentlessly tainted – always undisguisedly poisoned. The government earnestly wishes for us to disappear – they are shocked and cannot understand how we’ve managed to attain the loud and meaningful voice that we have – and they hate us for it. Therefore, we should take great care to protect our collective ME/CFS voice.

      The real hope lies in the private enterprise of the medical researchers and scientists I listed in my above post. These are our heroes – these are the only true emissaries of SCIENCE. These tenacious, intrepid ME/CFS fact-finders are our best, most promising hope for the SCIENTIFIC advancement of our cause. They need our voices, our support, and our funding. Keep sounding out, and making waves, but leave your estates to the private entities in your wills – donate whatever you can to their scientific efforts now. Continue to compel the government to change course, but put your hope in the true pioneers of science. And God; for science IS God, and, “The Word of God is like a lion. You don’t have to defend a lion. All you have to do is let the lion loose, and the lion will defend itself.”

      • Jennie Spotila says:

        Now we are moving into the argumentative and repetitive category. Let’s agree to disagree, and move on.

        • Nancy Blake says:

          I am troubled by a reply to my comment which contains much that U agree with and much which is the very opposite of what I believe and which conveys a kind of fanaticism that I don’t share.

          I respect that this is fundamentally about supporting Jennie in her distress about not being able to participate in the March for Science demo, and not the place for controversy.

          I respect science, rationality, and just paying attention to what is in front of us. Calmness and courtesy. I am truly sorry to have brought a tone of controversy into this thread.

  14. kathy d. says:

    Jennie: Be kind to yourself. Above everything else, take care of yourself.

    You do so much advocacy work for those of us with ME/CFS all of the time. Your
    blog about the March for Science and the discussion of sign slogans was terrific, and we all appreciate that you had added our names to them.

    But, jeez, you know best what you can and cannot do and you have to listen to your body.

    Disappointment is awful when one looks forward to an event like this. I felt exactly like this when I had prepared myself to go to the Women’s March on Jan. 21. I had a sign calling for health care for all, clothes and food ready to go. Then I was up all night and got no sleep and could barely make it across the apartment. So I had to tell friends I couldn’t go. I felt bad all day, but I heard from friends what happened and watched the program online.

    And on Earth Day, I had wanted to go to a public memorial of someone I knew, but I realized that I couldn’t travel across the city and be at an event for 4 1/2 hours and then come home. So, I’ll watch the program on Facebook if it’s available.

    There are a lot of things wrapped up in disappointment. We’re all basically active people who want to be out in the world doing things, especially advocating for ME/CFS research, funding and a cure. And being limited by our health considerations is very hard.

    But give yourself a statute of limitations for feeling bad. What you do all of the time is immeasurable and we all appreciate it. It’s helped get the NIH to pay attention to this disease and made many contributions. So treat yourself well.

    And with considerable self-discipline, I am refraining from commenting on the message criticizing the March for Science and the Women’s March.

    • Jennie Spotila says:

      A statute of limitations on feeling bad! I love it! I really learned from this experience, so I don’t feel bad anymore.

  15. Jennie,

    I’m not going to tell you that it’s foolish to feel guilty, or that you shouldn’t feel at fault for not marching. I’m going to tell you that I understand your feelings, that I’ve felt them too.

    When it comes to wanting/needing control I am a master. Perhpas it’s because we’ve lost so much of what is perceived to be control over our life choices that we are ultra sensitive when we lose even more.

    Maybe you didn’t physically march, but you participated in the mind, in the preparation, in the research and afterthought. You understood the cause and the need for the event, and wrote a blog post about it, how your experience made you feel and what you learned from it. That in itself is more action than many people, even healthy ones took. So, thank you.

  16. Mary says:

    Oh Jenny I am so sorry you couldn’t go. Your adult decision holds up – but it just rubs in the choices we have to make with CFS/ME doesn’t it?
    Your earlier blog about your preparations was fun to read. In my head I planned your sign – MARCH FOR ME – I was going to send my name but thought you wouldn’t have room for them all on your sign. I loved the thought that I might be included too in the march.
    I also asked my Scientist son in Memphis TN (I am English) to go to a march for me – for ME.
    Please keep writing and letting us all share what you are doing. I really enjoy reading your words.
    Great big hug to you from Mary

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