Brilliant Scientist Among the #MillionsMissing

My friend Barb opened a window into the extraordinary loss she has endured because of ME/CFS. Please read her powerful statement, and count her among the #MillionsMissing.

Thumbnail.-MillionsMissing-US-205x300If you want a tiny peek into what I live with every day, read what I have written here. I rarely post such an in-depth look publicly, because of the stigma around chronic illness and disability. It hurts when people judge me for how sick I am. And many do. It hurts when people leave me because of chronic illness. Which some do. It hurts when people blame me for being sick. Which some do. So I avoid talking “too much” about the specifics of how bad it is. For some people, talking about it at all is “too much.” But today is the day of the ‪#‎MillionsMissing‬ protest against the government’s inaction regarding Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), and I can’t go to any of the in-person events because I’m housebound disabled by the illness. I can only protest virtually. So this is my virtual protest: an attempt to educate anyone who cares to learn about the effects of this disease that has stolen my life, and the lives of millions of others like me.

Millions of us are missing from the lives we thought we were going to lead.

I am missing from the work force. I WANT to work. I can’t work any job. I can’t meet deadlines. A few weeks ago, someone offered to pay me to help her do some research for a book she’s writing. I have yet to be able to do a single thing to help. I wanted to try, I’m still trying to try, but my cognitive and other physical functioning is fleeting and unpredictable. I have yet to experience a moment of cognitive function sufficient to allow me to read an article and remember anything I read beyond the first few sentences. I constantly have to start reading over, and retain nothing.

I am missing from any definition of financial security or stability. My meager disability income is insufficient to cover even costs of living. I’m missing from the Medicaid and Food Stamp rolls, because my meager disability income is still higher than the draconically low income cap those programs require. Since I don’t qualify for Medicaid, I don’t qualify for in-home help around the house or errand-running assistance. So I’m 44 years old and dependent on my family for food, shelter and errand-running. It’s quite the indignity for all of us. I am a burden on my family. They love me, but that doesn’t mean they are not burdened by sharing my expenses. My parents should be retired, but they’re working partly in order to support me. My brother also works to support me. That weighs very heavily on me.

I am missing from the grocery store. Even if I could fit food costs into my meager disability income budget (I can’t), I don’t have the strength to go shopping

I am missing from my avocation, sea turtle conservation.

I am missing from field research.

I am missing from laboratory research.

I am missing from wildlife rehabilitation.

I am missing from Herpetology.

I am missing from Marine Biology.

I am missing from Ecology.

I am missing from Environmental Science.

I am missing from Science.

I am missing from Academia. I haven’t even been able to publish my doctoral research because my brain doesn’t work well enough anymore. The article is written, and only needs the final step of finding more recent citations on the subject, but I haven’t even been capable of doing that simple thing for the past eight years that I’ve been disabled.

I AM MISSING FROM MY OWN BRAIN. The loss of my cognitive function, my sharp wit, my brilliance is the most tragic loss I have suffered from this illness. People used to call me a genius. Now I’m average or above average. That might not sound like a big deal to someone who has not suffered the loss of their intellect, but it is a big deal to those of us who have. I can’t read books, I can’t read scientific articles, I can rarely even get through an article in Time magazine if it’s more than half a page. That’s highschool-level reading. My brain is slow, full of fog and mud. Thinking, focusing, concentrating, analyzing, assimilating information, remembering…these are all struggles that wear me out after a short time. So much of the education I busted my ass for has faded away. I expect to get my usual Post-Exertional Relapse from writing this.

I am missing from the stage. I can’t sing any more. Every time I try, I get Post-Exertional Relapse. The technical term is Post-Exertional Malaise, but that term doesn’t adequately describe the debilitating exhaustion and pain that any exercise causes. Singing was one of the greatest pleasures I had in life.

I am missing from the creative world. I used to write poetry, paint, draw, make all kinds of jewelry, make lovely things with polymer clay. I used to have a soaring imagination. Now my head is full of fog, and trying to create anything is like pulling teeth. I have been working on the same necklace for 3 (or is it 4?) months now, and I’m not sure I’m even half done. I am missing from most of my former hobbies, including marine aquariculture and most of herpetoculture. I wouldn’t have any pets if I weren’t willing to spend some of my precious, limited energy on my few small reptile pets. Life without pets is unbearable to me. So I compromise. I borrow energy from the future so I can have a little quality of life with animals now.

I am missing from my friend’s lives. I am missing from social interactions. Weddings, baby showers, barbecues, birthdays, funerals…I can’t travel, so I’m missing all of these things. I couldn’t even go to the funeral of a dear friend. I couldn’t support her husband, either, and he’s a dear friend. The isolation this disease causes is profound and devastating.

I am missing from my own support group. I’m a co-leader of a support group for people like me, yet I’ve only been to one or two of the monthly in-person meetings this year, and have rarely been capable of answering the emails and phone calls that are part of my responsibilities. I WANT to do those things. I WANT to be capable of doing them. I find them fulfilling and uplifting. But they require more physical and cognitive function than I’ve had for a while now.

I am missing from restaurants, movie theaters, plays, and all the other fun extracurricular things I used to take for granted that I can’t do anymore without getting Post-Exertional Relapse.

I am missing from the beach. Sometimes I wonder if a person can literally die from pining for the sea. I wish I were joking. Every year, I see my friend’s photos of their beach vacations, and I feel torn up. I feel whole when I’m at the ocean. It’s my happy place. But I can’t travel, nor do I have the strength to walk down the sand to get to the ocean. So I’m a marine conservationist who hasn’t seen the sea for 10 years.

I am missing from walks in the woods.

I am missing from hikes in the mountains.

I am missing from camping in the wilderness.

I am a naturalist and nature-lover missing from Mother Nature.

I am missing from motherhood. It didn’t happen for me. Now that I’m past reproductive age, it will never happen for me.

I am missing from a loving partnership/relationship. No one wants to date someone as chronically ill as I am. I’ve had nibbles of interest, but they always disappear as soon as they learn how disabled I am. This is what the majority of us experience. Most of us fear that no one will ever love us enough to be able to see past our illness.

I’m missing from a tidy home. I moved into my new place in November of last year, and have only been able to unpack about a dozen boxes. Unpacking is such an epic overexertion that I get Post-Exertional Relapse for days afterwards. Cleaning my own home is a pipe dream.

I am missing from a refreshing night’s sleep. I don’t think I’ve had one this century.

I am missing from pain-free days. I’ve only had one since I came down with the Mononucleosis that developed into ME/CFS in 1996. That one pain-free day happened after I received acupuncture, which I can’t afford now.

I am missing from clinical trials. I have been too sick to travel to the very few that have happened, and can’t afford to pay to participate in the long-distance ones.

I am missing from formal medical education for doctors. There are a handful of doctors in the US who are interested in ME/CFS, and they go out of their way to learn all they can about the disease. But there is little for them to learn, because there is little research or research funding.

I am missing from the only treatment that has made any difference in my symptoms, because Medicare (or most insurance) does not cover Traditional Chinese Medicine, and I can’t afford to pay for it myself. In the 9 years I’ve been disabled, conventional medicine has had nothing to offer me, but herbal medicine made a big difference in my functioning and quality of life when my family and I were able to afford it. That time has come to an end, and so has my hope for recovery as long as the government continues to do nothing. Without government funding for research, large research studies aren’t going to happen and western medicine won’t have anything new to offer us.

I am not alone in any of this.

There are millions of us.

Millions just like me. Some are sicker than me and some are more functional, but all of us struggle to survive with this illness.

Millions dismissed and ignored by the government, medical and research systems.

We are not lazy. We are not crazy. We are not lacking moral fortitude or motivation. We are suffering terribly from an as-yet poorly understood neuroimmune disease. It acts like a neuroimmune disease, anyway. We’d have a better idea of what kind of disease it is if we could get more research going. There was a time when diabetics, people with MS and other invisible diseases that are now legitimized were also dismissed as psychosomatic. What led to legitimacy? Research. What leads to treatments? Research. What leads to research? Government funding.

We need help.

We are sick and tired of surviving, waiting for the government to get its act together and fund research into this disease. We want to LIVE, not just survive. We want to go back to work, or school, or hobbies, or out to eat, or out to a movie, or just have a day in which we don’t have to consider the sickening consequences of every single, tiny thing we do. We would love to have a day in which we could dress ourselves or fix a snack without worrying if we’ll have the energy to eat later. We would love to be able to take having the energy to get out of bed for granted.

Surviving in limbo is hard work.

We just want to LIVE.

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17 Responses to Brilliant Scientist Among the #MillionsMissing

  1. Thank you, Barb. I know from my own experience how much writing this article will have taken out of you. I salute you.

  2. Lynn Preis says:

    Thank you for such a thoughtful article. You have spoken for so many of us, and I admire your courage and strength.

  3. gg says:

    Not sure if Community Acupuncture is available in your area. Sorry for all your suffering, i am a patient as well, not as severe, but nonetheless harshly impacted!

  4. Angie says:

    Feeling for you about time something is done by government. You are bravew xx

  5. kathy d. says:

    Thank you for that very incisive description of what it’s like to live with ME/CFS. I can relate to a great deal of it. I write occasionally, but no one understands when I say I have to write everything down in my Word program, every fact, idea, source, quote because I won’t remember it. And only the repetition of typing and rereading it all makes it finally get into my brain where I can think.
    Friends can sit down and just write. I have to labor through everything for hours.
    I hope that you find some things to enjoy, movies, listening to music.
    I forget to listen to music and I get headaches sometimes from it and I grew up in a household where music was on all the time, and we sang together. So I understand that loss.
    I relate to a lot of what you are saying and thank you for saying it.
    I should bring your essay with me when I go to doctors’ appointments.

  6. Amy says:

    Thank you for posting it. It made me cry. I feel less alone.

  7. Barb says:

    I really appreciate all of these supportive comments. Thank you!

  8. Maggie says:

    Thankyou for writing this… It made me cry too for the life i once had and the life i would love to get back. Very descriptive, i applaud you for the effort i know you went through to write it. Thanks again!

  9. Laura Corbett says:

    Thank you for spending your precious energy to write such a powerful testimony to the devastation ME causes. May all of us find healing, soon.

  10. Rivka says:

    Beautifully written!! And all so true.


  11. Lisa Davis says:

    I can relate to so much of your story. I have been sick for almost 30 years. In Colorado, they have Medicaid buy in programs. I qualify for the Working Adults While Disabled. Working is very loosely defined. I make jewelry and only have to sell one piece a month. Self-employment is accepted; you don’t have to have a formal business. I pay a $90 a month premium and it is very worth it. Check to see if your state has Medicaid buy-in programs. Medicaid is federally funded, but state administered.

  12. Lisa Davis says:

    I should have added that I have SSDI and Medicare. Sorry, brainfog.

  13. Diane Kirk says:

    Thank you for putting into words what M.E is like xx

  14. Dave says:

    Really well expressed. Hope you’ve recovered from writing it. Sending love.

  15. Katie B. says:

    Thank you for writing this and sharing your life with us. It did make me cry because I can relate to a lot of the things you have written down and it makes me sad that someone else is going through this too. I think about writing what I am going through and write in my head all the time when I am laying in bed but I can never get it out into words on the computer. So, I think it is wonderful that you were able to express yourself through words. We have met at the support group and connect through the gratitude group too. I really want to print this out and bring it in to the doctors office and the therapists office and have them read it and and say to them, “see, this is real!”. And I will share this with an Australian girl that I met through a polish group. She suffers from Lyme Disease and has similar problems getting help and change with her government as well.

  16. Marianne says:

    Thank you Barb for words that you used precious energy to share for all of us who suffer with being missing from the many things you spoke about and the pain and suffering it brings.
    Thank you for sharing it so openly and honestly and vulnerably.
    Thank you for the gift of words to those of us who can’t find words anymore, as we used to, just like you mentioned.
    Thanks for it all.

  17. Evy says:

    I have a neuromuscular illness that took quite a while to be diagnosed and spent several years housebound. I still have profound brain fog and it’s hard to put into words when I tell people I’m not fully awake. I need to say my body isn’t able to function well enough for me to get dressed to go out to even attempt to get in my car. Why in the world would I want to go somewhere when I’m stumbling mumbling and not fully cognitive. I so wish in the near future there is more research and more compassion for people who are cognitively impaired due to a complex illness. I won’t even go into how much physical pain I have from nerve damage. My neurologist keeps telling me most people have no clue how disabled someone is if they indeed look okay. Recently I asked my cousin to take me to the beach where I had paid for a beachfront cottage. Just sitting on the back porch feeling the breeze on my face was Heaven.

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