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.
After years of work it’s time to attempt what we’ve never been able to do before – get Congress to force the NIH to double its funding for ME/CFS. Support the historic bill to increase research funding, add new ME/CFS research centers, require the development of a strategic plan, etc.. It will take less than 5 minutes.