Therein Lies your Calling

I used to devour books. Steinbeck had a line in East of Eden about a boy who read books so completely that he’d finish it, only to look up and have book all over his face. I’d read books with an open notebook, pen in hand, to scribble lines and quotations and sayings and thoughts. I read books like texts, whether it was fiction, autobiographical, memoir, or poems. I looked for beauty in words.
Lately, or for the last couple of years since graduating college, I haven’t picked up many books at all. I’ve purchased them. I’ve hoped to get to them someday. But the act of sitting to read a book is difficult because 1) I start to doze off almost immediately and 2) it’s entirely too selfish of an act–I might as well be in a bubble bath with a glass of wine.
I do read all the time, however, in researching topics I write about. Today, in doing that, I found this quote:
“Where the world’s greatest need and your greatest skill meet, therein lies your calling.” 
It’s from Aristotle, quoted in an article by Ryan Prior, who wrote, produced, and directed the documentaryForgotten Plague.”
I read this article written by Ryan because for the last couple of months, the story surrounding a forgotten population of people suffering from an unimaginably terrible disease has been my passion project. I haven’t been able to place any pieces I’ve written on it, though I have tried desperately. I’ve spent a lot of nights, staring at pitches I’ve refined, listening to a song on repeat, wondering how I can convince a publication that my story deserves space on their platform. I do this because an old friend of mine, Whitney Dafoe, is so sick from this horrible disease, unfortunately named Chronic Fatigue Syndrome, he’s been bed-ridden and unable to speak for over three years. 
Ryan calls it the most under-reported medical story. An estimated two million people suffer from myalgic encephalomyelitis, or ME/CFS, or anything but calling it “chronic fatigue,” which, as Ryan puts it, is a diagnosis that feels insulting when your entire life has been stolen from you.
I write about this here because a couple of months ago, when I learned my friend was so ill he hadn’t been able to communicate, eat, or move much more than sitting up in bed for a couple of years, I thought, as a writer who’d published stories and had connections with so many editors, that I’d have no problem raising awareness of his condition. I got excited over my ability to give a voice to a population who no longer had one. It was the truest of essence in my calling in life. All writers wish to change the world. To make a difference.
A dozen pitches later, I feel like I’m failing. I’m failing not only Whitney, but his parents who care for him night and day.
Yet, every day I still fight. I make connections whenever I can. I form friendships with people who are patients, and spend their days fighting for the energy to move from one room to the next. One said, “You will actually be healing people just by letting them know you know it’s a serious illness. We’ve been misunderstood and mistreated and you want to tell the truth, get accurate info to the public, to help the public understand. I mean that, you really will be healing people.”
The general population, the medical profession, and often the patients and their families themselves, don’t understand this disease. There is no understanding of what causes it, or how it can be treated. There’s no funding to study it. There’s no insurance to cover people who seek treatment. For some, the only treatment they are given is by telling them it’s all in their head. They’re told they’re totally fine, western medicine proves it, just look at these tests.
whitney2A somewhat precious thing I’ve discovered, despite the sadness involved, is that I knew Whitney before he got sick. I knew him for a short time, over a decade ago, and remember it so clearly because…I’m not sure why exactly. Whitney forced me to see the beauty in myself. He saw only my core. We communicated on a level of raw understanding and deep connection, even though we’d only known each other for a few short weeks. You can chalk it up to whatever you like but in knowing who Whitney is, the words people describe him as are things like magic, and enlightened.
I haven’t written about this in my personal blog. I’m not sure why, really. Maybe I wanted to “break” the story on bigger platform. I thought I’d burst out into the world as an established writer who has a new story to tell, and a big one at that, and people would devour it, just like I did with books. They’d eat it up and ask what they could do to help. I expected that. But after all these rejections from editors, I’m left wondering why. Why wouldn’t you want to publish a story about my friend who’s dying? About hundreds of thousands of people who are in the same position as him and maybe worse because they can’t afford or don’t have access to the treatment he receives? What about this huge, disadvantaged population who aren’t able to find medical coverage for a disease that won’t allow them to get out of bed?
I bought a white board a couple of weeks ago, and hung it by my desk. I have about ten pitches out to editors, and that’s going to double in the next week. I do this for Whitney, his family, and the heartbreaking stories I’ve heard in the last couple of months. As a writer, this is my calling: to bring the disadvantaged to justice. I’m not ignoring that. And now that you’ve read this, neither should you.
Want to help? Go HERE

56 replies
  1. bitsfromheaven
    bitsfromheaven says:

    My mom was a nurse for over 40 years and has seen only several real diagnosis of chronic fatigue syndrome….not because there aren’t more cases, but as you and her both state-no one believes the patients. It is chalked up to a myriad of other ‘mental issues’.
    Thank you for giving these wonderful people a voice…and now I’m going to check out the link you provided. Thank you!

    • justinreilly
      justinreilly says:

      Thanks, but I can’t resist noting ME (cfs) is not a mental issue (you say it’s chalked up to “other” mental issues). The Institute of Medicine has stated categorically that it is a physical, not psychiatric disease.

  2. Kari
    Kari says:

    Thank you so much for committing yourself to helping Whitney, and all the rest of us. I can’t begin to tell you how much it means to me. Big smile on my face right now!

  3. christina
    christina says:

    One (of many) of the sad things about helping us (ME since 1979) is that those who do often experience terrible frustration. We want all the kind people who turn their attention our way to be protected and supported but we can’t always do it. Thank you so much for your willingness to help us. You are an excellent writer. We are very fortunate to have you on our side!

  4. Gina clagg
    Gina clagg says:

    I cannot begin to express my gratitude. Your kindness and compassion towards those of us suffering is quite humbling. May God Bless you richly!

  5. Sissy
    Sissy says:

    I’m so touched by your passion for this very important story. I have been ill since 1998, and the hope someone like you offers is priceless. Thank you so much. May you be richly blessed.

  6. Sally
    Sally says:

    “As a writer, this is my calling: to bring the disadvantaged to justice. I’m not ignoring that. And now that you’ve read this, neither should you.”
    Well said.
    I write too, and hope that little by little, we can all make a difference through blogs, tweets, forums, articles, papers, Facebook and word of mouth.
    Thank you.

  7. Steve
    Steve says:

    We can’t thank you enough for using your talents to do what we can’t do for ourselves. I am encouraged. The last 11 years have been the hardest of my life and no end in sight.

  8. Sue
    Sue says:

    Thank you. It really does help, everytime someone who doesn’t have ME speaks up for us. It feels like a miracle when you’ve been invisible for so long.
    I’m interested in what the editors said (if anything) when rejecting your pitches. Is ME not sexy enough, or is it more that vague discomfort people have when they come up against something that’s not yet been crystallised in the culture? Those types of things require stepping outside your culture in order to see something clearer for yourself. Sadly, so many people are unwilling or unable or are too busy to endure the work that’s required to think for themselves, to see what’s in front of them, to swim past their prejudices. Thankfully, the tide is beginning to turn for those of us with ME. Finally. I’m not a grudge-holding person, but am I going to bathe in “I told you so” when we get the treatment and respect we deserve? Damn straight. I’m gonna sing it from rooftops with self-righteous gusto.

    • step.
      step. says:

      I don’t often get feedback when editors pass, but the general gist is needing it to be “news-worthy” for an op-ed, and finding a publication who hasn’t done a similar story recently. Just makes it a little more challenging in getting creative. I don’t have enough knowledge or experience (I think, though friends have said otherwise) to write medically about the disease, so my main focus has been raising awareness to the general population who clicks on catchy titles.
      Look forward to you singing. 🙂

  9. Art
    Art says:

    Thank you from Australia. Reading about Whitney’s plight always brings tears to my eyes. However your post made me cry for a positive reason this time – the realisation that someone out there understands and cares about those of us with this awful disease. He’s lucky to have a friend like you.

  10. Elizabeth Milo
    Elizabeth Milo says:

    Thank you for investing energy, emotion and time into bringing more awareness to this illness. 4.5 years after abrupt onset, I’m still in shock that something like this exists and affects so many… and I never knew.

  11. elizabeth
    elizabeth says:

    Your patient friend was right. You have ‘healed’ something in me just by letting me know you know it’s a serious illness. We have been so misunderstood and mistreated so thank you thank you thank you.

  12. ldifme
    ldifme says:

    What a lovely friend you are Stephanie, and a great writer. Thank you so much also for your excellent guest blog for the Let’s Do It for ME campaign. If there are any UK/Europe based writers out there reading this, we would very much welcome your support. This is a truly international and determined effort by patients and their families and friends to establish proper recognition, diagnostic tests & medical treatments for this disease and we are all very focused on these goals. The more support we have across the globe for this important matter of public health from wonderful well friends like Stephanie, the sooner we will get there. Thank you again from here in Europe.

  13. Greg
    Greg says:

    Thank you so much.
    ME is not forgotten. It is deliberately covered up.
    Powerfull white medical men have spent a generation rubbishing “cfs”. Even that name is deliberate.
    The size of the scandall is breathtaking.
    The more you find out about ME, the harder it will be to publish.
    Many people have had their career destroyed by trying to help us.
    But there is a Pulitzer prize for the person who breaks thru.
    Good luck.
    (Holding a huge grudge)

    • step.
      step. says:

      Thank you for taking the time to comment, Greg. All stuff I am learning about as I research the disease. I have a few friends like Justin Reilly and Ryan who help me with the political sides of things and I bug them often for clarification. 🙂

  14. Paula gilfedder
    Paula gilfedder says:

    Thank you for bringing awareness to this much neglected and devastating illness. We appreciate it so much!

  15. Gay L.
    Gay L. says:

    As someone who has this disease, all I can say is thank you. We need people like you. We need people to care. Thank you for trying to give us visibility.

  16. Nita Dozer Thatcher
    Nita Dozer Thatcher says:

    Thank you Stephanie! From the bottom of my heart, Thank YOU! I’ve had ME/CFS for over 40 years and have a son with the disease as well. It seems most people, even those in the medical profession, do not want to take the time to look in the shadows where so many of us suffer in isolation because we are house-bound and bedridden. Thank you for caring enough to see our pain, our struggle. Thank you for deciding to do something about it. We need you speaking for those of us who cannot speak. I hope and pray you are successful in shining a light into the shadows.

      • Steve
        Steve says:

        Speaking as a physician who has had CFS for 11 years, there are those in the medical field that still think we are mental, but I believe for the most part that 1. physicians just spend their time where they think they can be most effective in their practice and 2. They don’t understand our disease and 3. Even if they believe we have a physical illness, they have no clue how to help us.

  17. Laura Moore
    Laura Moore says:

    Just by coincidence I wrote a letter to NPR today urging them to cover ME/CFS at least for the UK’s awarness month of May. I included a link to the video on youtube about Whitney and also a link to his father’s research department at Stanford. they have not covered any ME/CFS issues since the horrible PACE studies were published.

  18. Pat Fero
    Pat Fero says:

    I so appreciate this article on this day, March 26, the day my son was born in 1982. I was sick, but didn’t know it. I had teacher burn out…and never considered that the infection I had in 1980 with fever 104 and head pain from hell could be a factoring why I could not regain my stamina. Casey came along 2 months early and with all the meds and surgical drugs, I just became more ill. I quit work in 1988. My son had early onset of this damn disease (DD) and was sick every day until he died on July 4, 2005 of Viral Myocarditis with fibrosis (scarring of heart tissue). Can I prove his death is related to the DD? Nope. However I am doing my bit by writing a monograph about risk factors for early onset. With so little funding, studies on kids are few. The very sad thing is that parents of 8 and 9 year old kids in 2016 have few places to get help. Lastly, Whitney Defoe and others like him need you to keep pushing. Thank you.

  19. herencouragingheart
    herencouragingheart says:

    Thank you so much for writing this piece. People do not understand unless someone shares the information with them. Thank you for following your calling. I am sure your friend is appreciative.

  20. Suzanne
    Suzanne says:

    Thank you so much for this. As the mother of a very sick young man whose had years and years of his young adult life stolen from him, I am very thankful you would take this cause on. I am hopeful with your talent for words people will start to listen.

  21. Kandice Dickinson
    Kandice Dickinson says:

    Thanks times a million from a former opera singer and lover of all-things-social-and-active woman who’s been mostly bedridden since 2000. What you are doing is SO APPRECIATED!

  22. Barbara Tuber-Sooy
    Barbara Tuber-Sooy says:

    My amazing son, Matthew Brandon Sooy, succumbed to this devastating disease after suffering for 4-1/2 years years of some doctors and some teachers treating him as though he were mentally ill. He was a Gate (gifted and talented) student who qualified suddenly for special Ed. He had a witty sense of humor and a brilliant mind. He took everyone under his wing and was willing to help anyone. He was all accepting just as you were. He was very, very loving.He died while at a friend’s house 3 months after turning 17 and 2 weeks before his sister’s 20 birthday. The day he died the present he ordered for her arrived. Two days later his school pictures came in, He was in the 1996 and 1997 Who’s Who of American High School Students, posthumously . It meant so much to him the year before because he missed so much of school. Matthew died April 11, 1997 and was buried April 13, 1997. He changed the world in the short time he was here. So many lives were better because he was in them.
    Forever remembered and loved. Never forgotten.
    He was our “Gift from God”. We were blessed to have had him in our lives es, even for such a short time, Rest in Peace my sweet angel. I shall see you again , I love you all the way around and back,
    Your loving family: Mom, Dad,Jess, Jeff,Preston and Rylie. Chris and Tammy. Alana, and Briana.

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