Whitney Dafoe – “Defying the Will of ME/CFS”
Whitney Dafoe won the award for documentary photography in the European Photography Contest 2022 for a series called “The Living Death” about his life with severe ME/CFS. Check out the series of images here or on his website. It’s amazing to see Whitney – so disabled – able to contribute on this level. His photographic eye clearly intact, he was able to win the award using the camera on his cell phone. He wrote:
On Winning the European Photography Contest
“There were quite a few winners in this contest so it’s not a huge deal, but thousands of people submitted work from all over the world and I am a Gold Award Winner and it is for images I took with my cell phone from bed, honestly depicting life with severe ME/CFS. I am proud of that.”
“Because it is an acknowledgment that I am doing something significant and meaningful with photography. Something significant and meaningful with my life.”
“Before ME/CFS became severe I wanted to be a documentary photographer. I saw a famous war photographer give a talk about his life and work at my school and instantly knew that was what I wanted to do with my life and furthermore felt strongly that it was what I was put on this earth to do.”
“But I simultaneously knew it was something I could not do because of ME/CFS. Because every time I traveled my health plummeted and because I didn’t have the energy or stamina that was necessary for that kind of job. But I remember him listing off all these sacrifices he had to make to live the life he lived – sacrifices that most people would not make, like family, comfort, home, security, children, etc – and I remember feeling like if I could sign up right then I would. I was ready. But my body was not.”
“When I became housebound with ME/CFS in an apartment in Berkeley, CA, I could no longer go out photographing and it broke my heart. I got so desperate to make photographs it was truly painful and a huge weight on my heart. I eventually had a breakthrough when I realized that my story was one that I would like to photograph if I was healthy and that I could photograph myself. So I started making images of things I did and experienced every day stuck at home. I made thousands of images of myself housebound in that apartment and continued the project as I had to move into my parent’s house and continued to get worse.”
From “Severe ME/CFS Awareness Day”.
“Now here I am bedridden. In 2013 I had to stop the project because I could no longer photograph. For 7 long years, i was too sick to even use a phone or computer let alone a camera of any kind. To sick to communicate in any way even in the way that was instilled so deeply in me. Photographs. But I got a bit better in 2020 and was able to use a phone and I immediately resumed photographing my life, making documentary photographs of my life with ME/CFS as best I could with a phone and limited mobility – limited ability to get the angles and perspectives and light that I really wanted and envisioned to truly capture what my life was like. But I worked on it anyways and made the best images I could.”
“And here they are winning an award. It means a lot to me because it feels like I am defying the will of ME/CFS. It has taken everything it can take from me and yet I am still living my dream of being a documentary photographer.
No, I’m not dodging bullets in Ukraine with nothing but a few changes of clothes and my camera on my back. I would rather be there doing that. I still feel like that’s what I’m supposed to be doing. But I’m here in bed and instead of bullets I’m dodging the minefield of ME/CFS and living a severely limited life. And that’s what I’m documenting.”
“It’s a universal story of suffering and chronic illness, but it’s also specifically about ME/CFS.”
I hope to use the images not only as works of art that stand on their own but to spread awareness of ME/CFS. Photography is a powerful form of visual art because we store memories as still images. So Photography is able to slip into our own consciousness almost as if it was something we lived or witnessed ourselves.”
One of Whitney’s award-winning images.
“The awards limited how much I could write for the project description and I, unfortunately, didn’t have space to write about what ME/CFS is or why it is important to learn about because I had to explain the project, which is very unique to the art world and needs an introduction.”
“Hopefully, I can continue to use photography to spread awareness about ME/CFS. I hope to get more publicity with this work so people see what it is like, see what we live every day. And I want to have a vast body of work ready for when the cure is found and ME/CFS is completely legitimized and made known to the public in hopes that this work will act as a visual record of what we have all been through for decades of neglect and repression by society.”
Living Life – Whatever it Brings
While the series was called “the Living Death”, perhaps in order to get across just how serious ME/CFS can be, Whitney is clearly committed to living life – even in a terribly debilitated body – to the fullest extent possible. A major goal of his has been to help others – particularly those with severe ME/CFS – to find a way to make it through.
In that way, Whitney reminds me of people like Stephen Hawkins or Christopher Reeves – who’ve endured great physical debilitation yet who’ve managed to find value and joy in life. Through his writings, Whitney has been a reminder that what happens matters, somewhere in the pain, the strangeness, the confusion, the fear that comes along with ME/CFS – that an unvarnished self still exists.
From “Update on My Health”.
Of course, it’s not easy. A downturn in his health left Whitney wanting to scream at his new limitations:
“So my brain/mind is much, much worse than it was a year ago, and cannot sustain working on things or sometimes cannot at all. Which is devastating for me…. I feel frustrated most of the time these days, wanting so badly to be able to work on things even if I’m stuck here in bed. Sometimes I want to scream at the heavens: “is it not enough to keep me bedridden??!! Can I not find some kind of life here in bed??!!!”
In the end, though, he finds some kind of acceptance:
“It is ME.”
It will do what it does. Our challenge is to find a way to accept it – again and again, and again. A more recent blog post, “Feelings are Vistors”, suggested he had found a way.
From Whitney’s “Feelings are Visitors” blog.
In it, Whitney asserted he is not his disappointments, his fears, his upsets. Toni Bernhardt, whose books, “How to Be Sick“, and “How to Live Well with Chronic Pain and Illness: A Mindful Guide”, approached having ME/CFS from a Buddhist perspective, could not have said it better. From Whitney:
“The way I feel does not define me. I am not my feelings. They are but visitors. They will come and go, and I will remain. This feeling too will leave and I will remain. My spirit and awareness is still here and will emerge again.”
“We are not ME/CFS, we have ME/CFS. We are not sick, we have sickness. We are not tired we have tiredness right now. We are not sad or lonely, or desperate, we have these things, and in the future we will give them away.”
“We are not our emotions, they are only visitors that come and go. Remember that they will go and take note of when they do.”
“Whatever you feel will pass in time as well. And something new will come along and visit you.”
A Message of Defiance – to Severe ME/CFS
Then, on Severe ME Day came what can only be described as a message of defiance to severe ME/CFS: “You can take just about everything but you can’t take me, my ability to love, my sense of self-worth, my creativity, my experience of beauty, my joy. You will never define me – I will find a way to rise above you.”
“Dear Severe ME/CFS,
“Dear Severe ME/CFS,You can’t have my life, and you can’t have me. I can withstand anything you have to give and more. I will always rise above you.
You can take my friends and relationships, but you can never take my love.
You can take my career, but you can never take my worth.
You can take my ability to make things, but you can never take creativity from me.
You can take food away from me, but you can never take self-nourishment.
You can keep me in bed, but you can never confine me.
You can disable me, but you can never define me.
You can take the functionality of my brain, but you can never take my mind.
You can take away my ability to move, but you can never stop me.
You can inflict immeasurable pain that never ends, but you can never take the peace I hold within.
You can instill fear in all of my senses that makes me cower from the world, but you can never take away the beauty of the world.
You can take all things meaningful to me, but you can never take my purpose.
You can make me suffer, but you can never stop the joy I hold in my heart.
You can make me wish, but you can never make me beg.
You can take everything but my life, but I will always endure.
Because I am better than you. You will linger for a time and you will try your best to stop me and end me, but I am boundless. I will rise while you fall to ashes and one day cease to exist. You think you’re a monster? I am the monster. I will conquer you and destroy you. I am master of all things. I am life. Endless life.
I am a Severe ME/CFS Patient and I have never been stronger than in this moment right now. I am an all-powerful, living, breathing, soul. You will never stomp me out.
Sincerely,
Whitney Dafoe”
Congratulations to Whitney on his award, and thanks for the reminders.
How very moving. God bless you Whitney- you are an amazing man, an inspirational man.
Whitney, Thank You for sharing your your spirit and your photography-indeed you are remarkable!
Thank you, Whitney, for being our voice for this long-denied chronic illness. We are all very lucky to have you to share your story of someone whose disease is so severe. It all takes tremendous courage on your part.
Also, so many thanks to you, Cort, how would we ever do without your reporting?
Whitney I have followed you for many years. My husband came to an Me/CFS conference your father put on years ago and he came to your home twice for dinner with Ron Tompkins. I have such admiration for you and your parents. You have been my tasisperson on my journey. I’ve had it for near 23 yrs and am confined to my chair 95%. I too find joy and meaning every day.
This is very moving. Thank you, Cort for publicizing it, and thank you Whitney for creating it.
And how a propos, in an ironic sense, that it should come out at the same time as Anthony Fauci, who so set our cause back, is being lauded for his brilliant career.
Praise to Whitney Dafoe, and to Cort for making all this available to everyone.
I find myself without the words to adequately express all my feelings right now. I can only say, “Dear Severe ME/CFS, you can never take the love our community has for Whitney, nor the love I feel for this person I have never met, but who has shared his soul with the world.”
Well said, that is beautiful!
I have had ME/CFS and fibromyalgia for 38 years and am almost 69 years old now. I would consider my condition moderately severe at this point in my life. I’m mostly homebound now and my cat is my constant companion. Thank you, Whitney Dafoe, for your beautiful message of hope. It sums up so many of the feelings I have had all these years. Having a chronic, lifelong illness has taken so much away from me. There have been so many ups and downs along the way but I’m still here and hoping and praying for a cure. Thank you, Cort, for all the amazing work you do keeping us up-to-date on the latest research.
Thanks to you, Cort. And thanks to Whitney for showing us the creation of a life well lived. Your wisdom and strength will indeed help many, many.
Whitney: Thank you for sharing yourself so fully and so honestly and so openly with us. — xo Rivka
Beautiful.
It has also been 38 years for me since I first developed fibromyalgia and then me. I was fortunate in that I had a relapse and remitting situation that did allow for a life despite the roller coaster rides. In the past year, for whatever reason, I seem to have come to a point where the fatigue and pain is so profound that I have lost interest in participating in life but I do find moments of joy and solace in the natural world. Finding meaning and purpose is what keeps most of us going. Thank you, Whitney and thank you, Cort for continuing to provide us with hope.
Thank you, Whitney, for your beautiful rendering of your ME life. God bless you.
Whitney THANK YOU for your amazing contribution to our world. Your photographs are deeply moving and illuminating and your courage is over the top palpable! Your words are fierce, gripping and so inspiring to others, including me. I am a fellow artist and my current diagnoses are. Long Covid/Fibromyalgia. Not a picnic by any means but I am thankfully no longer bed ridden either. Art-making has always been been my salvation but especially now, after since getting ill, it is my lifeline. Congratulations on your numerous awards and I wish you continued success in photographing your days and experiences, both good and bad, on your life’s journey.
Thank you Whitney, and congratulations on the award. You are powerful. And thank you Cort, for all your work to share information. You are also a power.
I have had moderately severe M.E. for 34 years. When I have a few hours that I can be up and functioning (being careful not to do too much) I rejoice, while knowing it will be followed by days or weeks or months of being down in bed sick and in pain. But you are right— in all of those conditions I am still myself and I am indomitable. This disease is something I have, it is NOT me. It is almost impossible to explain this illness to people— they just can’t understand. Thank you for saying it so eloquently and so bravely. Thank you Whitney, and thank you Cort!
A really powerful message from Whitney.
Congratulations on winning the award Whitney. You are such an inspiration to all of us. Your words are so powerful. Your strength gives us hope. I am truly inspired by your determination to not let this dreadful illness define you. Sending my love to you. Thank you. Also thank you Cort for your constant quest to seek out answers for us.
Wow. Can’t really add anything to what has been said already, except to add my thanks to both Whitney & Cort for what you do. I am the parent of a daughter who has had ME since age 14. 24 years on now.
Beautiful. Touching. Great insight. Blessings to Whitney!
Horrifying, frightening,unimaginable,inspirational , astonishing and encouraging…all at the same time. To think that Whitney has gone from not tolerating even the slightest noise, visual or thought stimuli to his present status is amazing. I pray that like James ( Up From the Ashes ) that Whitney could possibly recover more fully some day.
Whitney’s story underscores the tragedy of medical establishment’s continued lack of interest in this condition. It’s criminal.
Thanks again Cort for all that you do.
Brings me to tears. What an amazing human being. An inspiration to all of us. Thank you.
Thank you, Whitney ❤️ You are an inspiration for everybody, inkluding us who have the same diagnosis ❤️
Have you come across anything that is helping? We have the same diagnosis.
Bravo, Whitney….. you are a photographer…. and remain so…..
valiant effort…… ❤️
You are an artist, photographer, and hero to us all. Thank you <3
My son, just turned 27, has had very severe ME/CFS for 2 1/2 years now. You are the only voice letting the world know about our living death. But also the voice for us the suffering: not all is taken away. We also need your strength as a beacon.
❤️
“You can take my career, but you can never take my worth.”
Thank you, Whitney, for this uplifting reminder. Having been disabled with ME/CFS and unable to work for almost 3 decades now, like you, I hope to one day get out of bed and “get my life back”. Lately I’ve been really missing having a job, with coworkers, and routines, goals and accomplishments to be proud of, mental challenges and financial rewards too! So thanks for the reminder to keep things in perspective.
Congratulations on your photography award! (Well deserved! I especially like your photo with the brown blanket. For me, it sums up how I often feel with/about ME/CFS.). I’m so glad you’ve had improvements. We’re all rooting for you!
And thanks to your parents for lovingly supporting/caring for you and to Ron for trying to solve ME/CFS for ALL of us struggling with it.
And finally, to Cort, thanks for keeping all of us on the cutting edge! One of these days… every little thing is gonna be all right!
I salute your wonderful Courage and Spirit. I am sure you and your wonderful parents will win the battle for your health….and others. I have followed your pprogress and bought the book about you, as my daughter has had severe M E for 30 years since the age of 11.
Without people like you, we would be bereft. God Bless you and your parents.
SO VERY SAD TO KNOW OF SO MANY BATTLING THIS AWFUL ILLNESS OF M.E.AND FIBROMYALGIA, AND I AM ONE OF THEM FOR SO MANY YEARS. I THOUGHT IT ALL STARTED AS A SCHOOLGIRL AFTER I TOOK A POLIO ORAL VACCINE, AS I BECAME ILL AND COULD HARDLY MOVE MY LIMBS. LOTS OF FLU-LIKE SYMPTOMS WITH GREAT WEAKNESS AND LEGS WERE ESPECIALLY WEAK. LOADS OF LONG PERIODS CONFINED TO BED, AND THEN AFTER A BETA BLOCKER DRUG BEING PRESCRIBED, ENDED UP IN BED FOR 3 YEARS FROM 1986-1989. THEN NEEDING A WHEELCHAIR AND HAVE BEEN DISABLED EVER SINCE. MUSCLES UNABLE TO WORK MY VOCAL CHORDS AND PROBLEMS SWALLOWING AND EATING. BUT THANKFUL THAT AS A CHRISTIAN, I WAS STILL ABLE TO USE A COMPUTER SO CHRISTIAN WORK HAS BEEN MY JOY. HAVE TO SLEEP SO MUCH DURING THE DAY, AS NIGHTS ARE HARD-GOING. BUT AS THIS DEAR MAN HAS SUFFERED AND FOUND HIS LIFE IN HIS PHOTOGRAPHY, DESPITE ALL HIS AWFUL SYMPTOMS, SO THE LORD JESUS CHRIST HAS BEEN MY JOY AND STRENGTH. ALWAYS EXHAUSTED BUT STILL EACH DAY GIVEN IS PRECIOUS. MY HEART GOES OUT TO ALL THE SUFFERERS, THAT THEY WILL FIND SOME JOY IN LIVING, AND OVERCOME EACH DAY.
I DO NOT HAVE A SEPARATE WEBSITE
Your ongoing work certainly deserved this latest prize. Thank you for your decision to find a way to keep being true to yourself and sharing your life.
Dear Whitney,
I’ll never forget the steadfast soaring email you sent us all, about holding our ME/CFS struggle for us, if we cannot. It lifts and comforts my spirit still.
May you, your mother & your father all know my deep gratitude.
Now you inspire me yet again — hearing you describe your centered, luminous soul after all this time … your soul that’s been staying clear, apart, whole & courageous — regardless of the ME/CFS, the visiting feelings, etc. … (but is open to learn from them).
Your soul is the heroic winner of every kind of contest — in its the ability to withstand and endure and stay afloat (see beautiful poem by Flaubert), no matter what its outer or inner life requirements or conditions. Ones listed by the war photographer you met, that you’ve known in your own photography calling & distinguished career, and with this ME/CFS.
But no matter what, please know: * I look forward to your photographs of unforgettable artistic excellence (ones past, now, into the future). And, * I’ll continue to be inspired by & learn from your unforgettable, beautiful soul.
With love from,
Ms. Alden Lancaster (22 years bedridden w/ severe ME/CFS)
Takoma Park, MD
[Cort — * This P.S. strategy & dream (below) is not appropriate here I’m sure — I could tweak it, if you think worthwhile, to go in the comments after a more appropriate topic you present, or just to send to ME Action or ? (where) ? * I hope you are doing well! * I grieve Darden (Dede) Burns with you; she was a friend both before & after her ME/CFS. * Have you considered this 2021 ME/CFS study of treatment studies (I found very helpful) , as a possible HealthRising feature: “Demystifying Chronic Fatigue Syndrome/Myalgic Encephalomyelitis – A Systematic Review,” by Marius Kraemer and Muhammad Shoaib, Journal of Musculoskeletal Disorders & Treatment, 2021.]
P.S. IF you hope for a ME/CFS cure, imagine this dream:
–> * These recent award-winning photos of yours + your story; * ME/CFS info from most impressive, reliable medical sources; * A brief summary of to-be-created $1 billion House & Senate bills for ME/CFS research for cures per sub-type, sponsored & co-signed by prominent leaders of both parties.
–> These 3 to go into a LETTER to EACH CONGRESSPERSON, that also:
** Cites estimates of THEIR House Districts’ &/or THEIR States’: — # constituents with ME/CFS (= # votes for the legislator or not); — # suicides from it (seriousness); — annual state fiscal impact through loss of tax dollars, disability payments, & resource drain (cost to State).
** Is signed by: Local area doctors & athletes with ME/CFS (credibility); State advocacy groups & member associations (# votes for the legislator or not); Prestigious national & international research centers, NIH, CDC, Academies of Sciences’ Institute of Health (its new name), etc. (credibility).
–> Then, in the month leading up to the votes on each chamber’s bill, then the final bill: * BARRAGES of EMAILS & FAXES from constituent victims affected & their supporters (1-2 million+, approx. 30,000 per State; 60K if sent before both votes; given the est. 2.5 million in US with ME/CFS) (show of strength for the bill, # who may vote for the legislator or not); * CAPITOL HILL and LOCAL LEGISLATOR OFFICE VISITS by compelling ME/CFS sufferer constituents (if bedridden brought there via Zoom) — bringing their stories, the letter again, & the bill to co-sign. * YOUR (& SELECTED OTHERS’) PHOTOS & STORIES ALSO SEEN where Congresspersons may have time to absorb their messages (along walls of the underground shuttle to the Capitol? As handouts in nearby lunchtime eateries? Other ideas?)
–> THE RESULT: BILL PASSAGE IN BOTH CHAMBERS, THEIR RESOLUTION, & FINAL YES VOTE COULD bring forth a $1 billion+ appropriation — akin to what Long Covid got in 2021– for rigorous research by your Dad & other best researchers, to find the conclusive underlying mechanisms of ME/CFS, then for the development of affordable underlying cures per ME/CFS sub-type — for you and all of us! At last! So your photography calling will continue as before!
*** Let all the committed catalysts for each part of making this $1 billion dream a reality: Come Forth!
Whitney – I see you have actually fulfilled your dream. You ARE a war photographer, documenting the atrocities and the ugliness, as well as the courage and fortitude, hopes and moments of respite and beauty in this strange, long, unprovoked war we are all fighting.
Even if distant geographically, we are all fighting alongside you every day to somehow make meaning of our lives, no mater how restricted.
I’m over 50 years in, having experienced varying degrees of severity from years of very mild (just regularly feeling woozy) to severe (bedbound, unable to move or think). My original trigger was pesticide exposure with possible neurological and/or blood vessel damage. I’m in Australia now with no family, carer/s or medical support. I’ve been through hell since severe from c2015, but am a little better currently, and my mental health is much improved since I found my own project to pursue from bed/couch, which is immensely interesting and satisfying.
In case anyone’s interested, at my lowest point, I retaught myself to meditate, and after a while found a way I could switch off the pain permanently via repeated very deep concentration exercises, mentally communicating with my nervous and immune system that all is well and they have no need to react in this way to protect me, thanking them, but firmly asserting they can and should now stop. Keep repeating with very firm and deep conviction, until pain clears, and again when/if it comes back.
Sorry if this sounds like total crazy ‘woo’/and/or the dreaded LP(!), but it’s actually true, and I’m only including it because I know you meditate and possibly it might work/or even just help a little bit for you or others reading who are comfortable with inner work and feel able to attempt these sorts of exercises. (I would assume it will only work if it’s a ‘stuck’ over-reaction of the nervous and/or immune systems that is chiefly responsible for the pain in one’s own case, without other issues (eg food intolerances, toxins in system, ongoing physical abrasions, neck/ circulation issues, etc) being ongoing causes that need to be addressed in other ways.)
Unfortunately, I haven’t yet found a way to cure my most persistent, long-term symptom – OI/faintness often with accompanying pain in neck and shoulders; I think it might be structural CCI or endothelial type damage causing it, but have no access to clued-up medical experts to explore these possibilities.
Congratulations again on your award, Whitney, wishing you well and all here the same inner courage and determination to make something good grow from the depths of our suffering. I honour the light within you all. May it shine on forever, no matter our outer circumstances.
Dear Whitney, thank you for these and for your stunning words. Congratulations on your award and the determination to put this out into the world. May you receive back a thousand times the courage, strength, hope and love you have given this community.
I HAVE SUFFERED. HORENDOUS NIGHTMARE THAT UPON ARISING EACH DAY HAS NOT VACATED MY VERY BEING. AS I TRIED IN THE BEGINNING TO MAKE MEDICAL SENCE OF IT ALL IT ELUDES ME TO THIS DAY. HAVING GIVEN UP ALL AVENUES AFFORDED ME. I REMAIN STEAD FAST THAT IN CONSTANT ANTICIPATION. OF A CURE. MEDICAL ANESTHESIA. 1971-1995. I EVEN SURRENDERED MY BODY TO STUDIES TO HELP OTHERS 6YEARS OVER TIME FROM 1989 -1995. AT THE PRESTIGIOUS. NATIONAL INST. OF HEALTH. 6 SEPARATE OCCASIONS. AND ONE CONDUCTED AT WALTER REED HOSPITAL. IT REMAINS MY SHADOW. BUT I REFUSE. TO GIVE IT PERMISSION TO DEFINE ME AS A PERSON. DIAGNOSED 1988 -2022. PLEASE ALL RIDICULE HAS BEEN THE MOST HURTFUL. OVER TIME WE ARE FORGOTTEN TO SLAVES OF BEDRIDDEN CAPTIVES. NEVER LAZY OR CRAZY. I AM HAPPY THAT IT IS FINALLY GETTING THE ATTENTION IT SHOULD HAVE COMMANDED IN THE FIRST PLACE. THE QUIET MOUSE THAT ONCE ROARED.