Upon reading Ryan Prior’s story of Ron, Janet and Whitney’s battle with ME/CFS on CNN yesterday Martha penned this moving post on her Facebook site. Thanks for allowing Health Rising to share how Ron, Janet and Whitney’s story provided an opening for Martha to take a stand to end her own self-doubts and move forward. From Martha’s Facebook site:
Today, May 12, is International Awareness Day for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): the condition that I have suffered from for 18 years.
The article attached to my post, here, features one fellow sufferer, Whitney Dafoe; his father, Ron Davis, a Stanford geneticist who is racing the clock to uncover the roots of the illness; and his mother, Janet Dafoe, who, along-side her husband serves as Whitney’s primary care giver.
Like any chronic condition (Multiple Sclerosis, Lupus, Parkinson’s Disease, etc.), ME/CFS affects each person differently, and to varying degrees. Whitney Dafoe is one of the most affected that has ever been brought into the greater spotlight, which makes his story – their story – difficult for even me (or maybe especially for people like me) to read.
I have never been as gravely ill as Whitney is. I am what is best described in the field as “moderately affected”: not as affected as some, but enough so that I have never been able to work, I have not been able to have a family of my own, and I have lost almost every other opportunity to interact with life in a normal way, due to this condition. And, I have repeatedly sat vigil; holding my breath and waiting, as my system touched down – multiple times over the years – into somewhere too close to the edge of total system collapse and a truly threatening level of dysfunction.
By the grace of God, or the Universe, or whatever guiding force may look down upon us all, or, perhaps, just by luck alone, I have been fortunate enough to find some treatments over the years that have kept me from getting permanently stuck in that frightening place.
However, Chronic Fatigue Syndrome has long been surrounded in stigma, confusion, mis-perception, and even mis-appropriation of government funding – a history that’s been defined in many ways by the belittling words in the condition’s very title.
As a result, I have had to fight our system of health care at every step along the way to receive any care at all. This is highly typical – if not universal – for sufferers of this condition.
I have also lost many friends and important relationships over the years, due to my inability to adequately sustain them, and, to adequately explain my situation, my condition, my life (and why it looks the way it does), and my-self, to them. (I often still find myself struggling to explain these same things to those of you who are left.)
And though I have spent my entire adult waking life and “career” trying to understand the condition, trying to understand and assess the potential applicability of various recommended treatment options available (most of which come from well beyond the orderly walls of Mainstream Medicine, and instead must be collected from the various fields of care that make up all of Alternative Medicine)…my collective intellectual knowledge on these matters often outstrips my ability to actively institute them on my own behalf…
…my system (or psyche) has increasingly grown resistant to my own best efforts to just, stop, and – in the face of all that damaging madness – simply care for myself in the very best way that I know how…
Somewhere along the way, the doubt that was cast onto me so repeatedly from the outside, turned to into doubt that now comes from the inside. As the validity of my symptom lists were repeatedly questioned, as my motivations for educating myself were so obviously suspected (and by so many of my physicians), and the topic of conversation around me was repeatedly (and awkwardly) shifted, I began to doubt my own self: my own perceptions, my own ability to assess and understand a situation, let alone any specifics of this complicated condition. And, perhaps most damaging of all, I began to doubt that I was even remotely worth the kind of loving and immaculate care that I must provide my system in order to keep it afloat and above the imperative line of “functionality”.But every time that I waver in this way, at least, every time that I can remember to do so, my mind drifts back into the scenes of Whitney Dafoe’s bedroom, where he now lives full-time: intimate, exposing scenes that he and his family have chosen to share in their collective efforts to reveal the true devastation that this disease can, and does, cause…(and, to attract attention and funding to assist in the elucidation of the causes and cures of the condition)….
…and every time I think of Whitney, lying there in his bed, alone – day after day, week after week, year after every passing year – I think to myself:
Martha, you are not allowed to doubt the reality of your condition. You cannot question the validity, or importance, of the few things you’ve found to help your own situation (even though meager they may appear). If you allow the doubt that has been cast upon you to turn into and onto yourself, then you are also doubting the very reality of Whitney’s condition…as well as all of the “Whitneys” of this hidden world of illness who will never be featured…and never be seen. And, in so doing, you are throwing away the very gifts that God, or the Universe, or sheer Luck alone, have passed in your direction.
And I will not do that, I cannot do that: not to any of us. We have all been through too much already, without our own selves to fight.
Everyone watches Days of Awareness for various medical conditions, along with so many other truly valuable causes, come and go…and I think we all wonder how we can help, what can we do in the face of such varied and ceaseless suffering? And, not seeing any clear or helpful answer to these things, we often just feel more aware and even less hopeful for change…paralyzed, even, by the overwhelming nature of it all…
…Today, on the day that was designed to bring attention to the – (grossly) under-recognized, (grossly) under-diagnosed, and (grossly) under-funded – condition that I, myself, actually suffer from…I still arrive back at this familiar place of dejection.
But this year…this year the clouds parted as quickly as they’d arrived, and the answer, for myself and for today, became clear: I must make a post, share a little slice of my life’s truth, and then stop, and commit myself fully to the task of learning to care for, and about, myself again. I need do so for myself, for my loving partner (and primary care-taker) Brian, for my family and friends (all of whom I hope to be in a better place to support someday, and even some, to care for), and, in honor of Whitney Defoe, and his brave and loving family.
To all of you who have ever loved me, I ask that you take the time to read the article about Whitney and his family, and his father’s efforts to fight for his son’s life (along with all of ours that are attached to theirs, though this shared affliction). And then please share it, particularly with any friends or other contacts in the medical profession(s), and/or re-post it here on Facebook.
And please feel free to pass on my thoughts, here, to anyone you know who may be struggling to re-discover how to care for, and about, themselves, due to a similar experience with the stigma, and insufficiency of social and medical support that affects the sufferers so many chronic medical conditions. Some of you might be surprised how many you might actually know: this experience is surely accentuated in ME/CFS, but unfortunately is not at all unique to it.
And, take good care of yourselves, take good care of one another, and count your every blessing: every Friend of mine on here, is genuinely one of my own.
Martha
I’m so moved by this. I wish Whitney could read it and really see that he is making a difference.
I wish so too, Janet, for his sake, for your sake…the heartbreak that you must feel…there simply are no words for that kind of loss.
My heart goes out to you, and him, and your whole family.
We can all only hope and pray for one another…someday soon, may Whitney know the silver lining to his own story.
Thank you for your work, your husband’s work, and your family’s generosity. You are all loved and appreciated, even from afar.
It’s so true Janet. For all his misery Whitney is making a huge difference in this disease thanks to you, Ron, Linda, everyone who has contributed to the OMF, and because of writers like Ryan Prior – thanks so much Ryan for staying engaged in this field! – and Miriam Tucker.
Janet, thank you to your family and for the enormous sacrifices you make for Whitney and for everyone who has this illness. Rarely have I ever wanted someone to get better as much as I want Whitney to get better, particularly someone who I don’t know who lives on the other side of the world. I guess this is because deep down I know that it is only because of the unfathomable suffering that Whitney has been through that Ron and so many other resourceful, gifted and downright decent researchers have entered this field. I’m glad we have Ron fighting for us but I wish that Whitney never got this illness. Please know that you are our angels and I will always be hoping for the very best for your beautiful, kind and enormously talented son.
Thank you too Martha for your beautiful words. I wish you wellness.
OMG Janet!! With tears in my eyes, I second/third/infiniteth these comments!! The sacrifice the THREE of you make EVERY single day have similarly broken my constructs…. and washed me away with gratitude–and awe. I really can’t believe what you guys do!
I’m so glad someone put this to words–words that feel like they’ve been on the tip of my heart-tongue since first finding out about Whitney and Ron and yourself…. I am so much more grateful not only for my mobility and general wellness (despite having ~daily pain and fatigue and the constant now 15ish years of being gaslit and struggling to explain my reality to friends/fam since college…)…SO grateful for every day I’m ALIVE, but also for my ability to keep on saying NO to “the minimizing that I experience within and without” as Sarah R. put it below.
It really is crucial to this fight that we fight TOGETHER….that we know we’re not ALONE….that each and every one of us–every last moment of weakness or dizziness or fatigue or pain or debating whether we can go for a walk that day without crashing (for those of us who ARE so blessed….) or taking care of someone who REALLY can’t take care of themselves….the parallel universe of exhaustion I can barely fathom…we are all real! And speaking of blessings I feel the need to paste this on my wall as a mantra/reminder:
“If you allow the doubt that has been cast upon you to turn into and onto yourself, then you are also doubting the very reality of Whitney’s condition…as well as all of the “Whitneys” of this hidden world of illness who will never be featured…and never be seen. And, in so doing, you are throwing away the very gifts that God, or the Universe, or sheer Luck alone, have passed in your direction.”
I am not doubting or shrinking or going away. Whatever happens to my health or my energy levels…whatever my parents or my other “framily members” or my coworkers might wanna believe…..I’m very much HERE–ALL of us are HERE! Our pain–in all its forms, to all degrees–is real. So are we. And so is our hope and determination. =) Can you imagine if we all could instantly turn off alllll that collective doubt among the millions of us–how much power would we suddenly have????
PS–I just read Steph Land’s post about Whitney too….I just can’t express how much love gratitude is pouring onto my (thankfully protected) keyboard rn. I will just keep rooting for him to hold her hand again….
I am so sorry for the extreme hardship you, your son and husband have to live in.
I am so grateful for the way each of you persevere and show such great love and faith in life despite of it.
Your family is our greatest beacon of light shinning so bright it pierces through the many blindfolds people chose to put on in order to deny this disease.
Always with you Janet and Ron , so proud of Whitney too as I am of my beautiful daughter . But now there is hope with a true strength of purpose . We are UK . God bless America , we love you. Thank you Whitney xx
Thank you for your inspirational commentary that should bring tears to the eyes of the uninformed and hope to those who suffer from CFS.
Thank you, Martha, for bringing all these thoughts of yours together and putting them out to share with others in a way I haven’t been able to, and I have to assume many others haven’t been able to either.
Thank you Martha. Well done.
Thank you for sharing your story, Martha! It will help other people to fight our medical system to get any help.
Wow, Martha, what a powerful piece you’ve written. I too was deeply moved by the CNN commentary that Cort linked to about Whitney,Janet and Ron. And then, I just didn’t know what to do with it. I don’t really do facebook or other social media. But your comments have helped me take this in for myself and know that no matter my internal demons, I must be for myself. In my heart, I can’t afford to give in to the minimizing that I experience within and without. Thank you for helping me. And thank you to the Defoe/Davis family for your work on our behalf, as well as for being so generous with your incredibly moving story.
Thank you. Thank you all.
???
Whitney story was heartfelt & I know people who are bed bound but not to this degree. My heart also goes to his parents.
This would be good stories to be told to the masses on the news. The public have has no idea & no clue to the degree of how ME/CFS is all about. All people know about it is pain on the commercial advertising Lyrica. Yes, we all handling all the symptoms the best we can but button line is we are missing out on the true sense of life call living! I have had this for 40 yrs. (1979). I find myself home most of the time but I am blessed to be able to walk 15 to 25 min. with my chihuahua 99% of the time. Sometimes, with dizzyness & Vertigo. People should know all the other side effects beside pain we go threw.
Martha your post was an articulating masterpiece on ME/CFS. I too was and have been inspired and moved by Whitney’s, Ron’s, and Janet’s journey. Thank you for sharing your thoughts with us. As a fellow sufferer, I know how much effort that must have taken to write such an elegant piece of literary work!!!
So elegant. I’m in awe of this piece.
This is a little off-track but while working on getting this out I came across this wonderful – and rather heartbreaking – reminiscence of Whitney from someone who knew him briefly and it turns out fell in love with him – as he apparently did with her.
Only later did she learn what happened to him. I got a better picture of Whitney pre-illness from this than from anything else I’ve read.
It’s called the “The Love of a Thousand Muskoxen: Grieving a Love Lost to Time and Sickness”
https://longreads.com/2016/10/24/the-love-of-a-thousand-muskoxen-grieving-a-love-lost-to-time-and-sickness/
Very moving read.
What a beautiful story.
Wow, Martha -wow, wow, wow – that was an inspirational read -thank you so much for that – and everything you put into it. You speak for all of us, I think – it’s so difficult to find words to describe the … awe…we all feel for Ron, Janet, and Whitney – their shining example of incredible strength and perseverance under such adversity.
If there is one message we can take from their story, and yours – it’s to never give up – you are valued; you are important; you deserve to be taken seriously. ME is in the position that illnesses such as MS, Lupus etc were, a couple of decades ago – those affected also regarded as hysterical symptomatics, malingerers, and hypochondriacs – and here we are decades later and those folks are now taken seriously. Thanks to people such as Ron, with his strength and perseverance in researching for a diagnostic tool, we will get there.
Gentle hugs to all. xxx
Whitney, Martha, Janet and Cort,
thank you!
yes, thank you.
I’m in the UK and read this late last night. After a day spent in the vortex of fear around PIP (Personal Independence Payment, the government’s disability benefit) it couldn’t have been more appropriate. I wept. Really wept. It’s not often you hear something that speaks healing, deep into your soul. This did. All of it. Thank you. Thank you.
Profound, poignant, a clarion call to those of us who just…can’t/won’t…quit.
Renewed Spirit, much gratitude…
I really resonated with everything said in this article. Thanks for writing it. I think many people who suffer with this condition feel exactly the same, We end up doubting ourselves despite all evidence to the contrary and just get sicker and sicker. Whitney and his family are beacons of light and bravery.
Of course we do. Think of the wave of events that ensues when your own doctors discounts your condition. They are after all such authority figures. Family and friends have to choose between believing you and him/her! Tough decision. Why we as a community have to remain strong and support each other in these really dark years for the medical profession.
There is hope, though. One patient turned the regional director of the nation’s largest medical group around – and he is now pushing for change in how Kaiser Permanente treats people with ME/CFS. That could effect many and if Kaiser changes hopefully others will as well.
http://www.virology.ws/2019/03/11/trial-by-error-kaiser-permanente-changes-course/?fbclid=IwAR0W1Xa4uzeVauRb34ap9gRbMtyUNL3m2mS54kFoeGdhgeUVsi8iW1Mr6D4
Thank you, all, for your kind comments and feedback. ?
I will refrain from answering each comment individually, out of reverence for Whitney and his family…
…and, so that I can actually “do as I say” in my piece (and stay concentrated on my self-care routines).
But, I will say, I felt far more at natural ease posting my thoughts here, for all of you, my friends (even though we will likely never meet), than I did pushing the final “post” button on Facebook…because I knew you would all inherently understand. (Though, the feedback there has also been supportive.)
Thank you for your thoughts and encouragements, and I extend mine back to all of you.
Rest, heal, smooth the jagged edges of your weary spirits, your store-houses of self-belief, and we will continue, always, to draw energy from one another…share our energy with one another…and collectively our reserves will fill.
Martha
Ron Davis was chosen to help us all. I hope after this exposure on CNN more funding will come and speed up research. After decades of fighting, solution will come soon.
Thank you for this eloquent account of what so many of us feel but lack clarity or energy to say. It is a real gift when someone else finds the words you can’t. You spoke for me today.
Whitneys story makes me cry. It shows how far reaching this disease can be. Yes there are levels of it where people have different degrees of symptoms. I know how deep it can go and reading his story reminds me of that. It actually takes me into a CPTSD moment. The fear of dipping that far sends horror up my spine. And why wouldn’t it for all of us? It takes our lives. We are the walking dead.
Martha, this was beautiful and articulated the felt/lived inner experience so well. I love this: “And, perhaps most damaging of all, I began to doubt that I was even remotely worth the kind of loving and immaculate care that I must provide my system in order to keep it afloat and above the imperative line of “functionality”.”
Loving and immaculate care. That’s how we need to view the efforts we make for our delicate or besieged bodies.
Thanks for writing this piece and sharing your experience. I hope others reading it will feel as inspired by it as I am to continue our efforts to educate others as we educate ourselves about this puzzling and challenging disease. We cannot ever doubt the reality of our experience or that of others. Doing that would diminish the courage it takes for those like Whitney Dafoe to live each day with every ounce of strength and resolve he has. t would diminish the beautiful care of his parents–his mother as full-time care-giver and his father as a tireless researcher dedicated to finding a cure. Your article validates why this fight matters, why education & research matter, why everyone with this disease has, to the best of their ability, a responsibility to create awareness. When something is hidden from view, it will remain of little or no consequence to any but those who struggle with its unremitting physical & emotional demands. I hope other will pass this along. I’ll share it on my Twitter feed: @kuharskijm1 and on FB. Thanks, Martha, for your many helpful & positive insights!
What a powerful expression of Tonglen (loving-kindness) from Whitney: offering to take on our suffering as well as his own should we find it too much to bear. Thank you for the reminder of the nature of real love. ?
I am ready to give up. I am not strong enough nor do I have family support but I honor those who will carry on after me. Im sorry my intelligence, education and upbringing to fight against injustice was not enough to face this torture of severe M.E. But I acknowledge that the world is not fair, and I will be among those I call ” an acceptable loss”.
Carry on.. .
Dear Susan,
We all wish – always – that there was more that we could do for one another. And I wish, in this moment, that there was some form of support that I could offer you. I only have my love and appreciation for you, and for your bravery.
You are absolutely right: the world is not fair.
No matter each of our personal levels of intelligence, education, and circumstances of upbringing, those things are not enough, alone, to win this fight. It takes all of us, working together, contributing in whatever way we can. On some days, that contribution must be as simple as raw, unfiltered, honesty. No one involved here will ever be an acceptable loss.
My thoughts are with you.
Dear Susan,
I have been thinking about you a lot in the last weeks: wondering how you are, and hoping and praying for you. My doing so has reminded me that we are all doing so for each other, all the time, even though few of us know each other personally. We all have an invisible network of support and love, and of people who are rooting for us.
If you ever feel like talking to someone, please feel free to ask Cort for my email. (He has it.)
Because I am a moderator on this piece, I have access to your email, but because this is the first piece I ever posted on Health Rising, I’m not sure if using it to contact you is an appropriate use of your information. (I have a email in to Cort to ask him.)
If it is appropriate, I will try to contact you that way as well.
Warmly,
Martha
Susan, are you still with us? I’m very worried about you as I read this on on Tuesday, 20 August. Where ever you are, I am thinking of you. ??
Dear Susan,
Your post has stopped me in my tracks.
I am so sorry that you feel so low.
Wherever you are now, I am sending you my very warmest wishes,
Tracey Anne
So inspiring Whitney. thank you so very much for your courage which gives us all strength to keep moving forward. Keep the faith.