“I do not hope for a cure or a radical positive change in my condition; instead I believe in the possibility of pleasurable moments.” Carol Lefelt
I am overwhelmed by the large number of responses to my last piece about reaching the age of 70 and feeling that it might be time to stop my quest for the Holy Grail, i.e., the successful treatment. Thanks to all who took the time to consider my circumstances and describe their own.
- Is it Time To Give Up Trying? Thoughts at Age Seventy
- What Stops You From Trying To Get Better? An ME/CFS and Fibromyalgia Community Report
Learning that there are patients out there in similar situations with similar reactions is truly helpful; I’m not sure why, but somehow life feels less out of control and less hostile. I really hadn’t encountered many stories of people my age before, and I discovered patterns that have helped me make more sense of my own experiences.
We all clearly mourn significant losses. Many, like “Whippet Lover” (aka Christine) describe “that cycle of desolation, hope, failure, disappointment and resignation” that accompanies the ME/CFS search for an improvement in health.
We “older” ME/CFS patients seem to be at different states of health, some more well than others. More fortunate ones like Darden Burns “found the therapies that brought about a gradual and real recovery.” The CPAP machine has improved the quality of Carole’s life. Jen experienced improvement with B12 and oxygen supplementation, Cathy Gee discovered Jacob Teitlebaum’s protocol and David says that treating a double snip at MAO A has resulted in “a bit of a quantum leap in my well-being”. (Yes, I’ve read Amy Yesko’s Guide to Neutrigenomic Testing but still can’t decipher the meaning of “a shortage of methyl groups in the body”.)
Nancy Henson is grateful for her doctors (Lapp and Bridges) as well as for acupuncture. The Methylation Protocol has also helped Steffi; Robert listed all the neurotransmitter and cellular supplements he takes, along with dosages; and Christine McLaughlin, who also shares her ME/CFS experiences on Health Rising, has been helped by Dr. Chia (See Could This Really Be Happening? One Year with Dr. Chia” http://www.cortjohnson.org/blog/2014/02/18/this-really-happening-one-year-dr-chia-chronic-fatigue-syndrome-patient-reports/).
I have an ambiguous reaction to these testimonies. On the one hand, I think, Look! There really are reasons to hope. And as so many responders have emphasized (to quote Darden Burns again), “hope. . .keeps us human beings going even in the most difficult situations.” Hope brings inspiration and encouragement. The many writers who have explored the role that hope plays in the ability of patients to endure serious illness seem to agree that loss of hope can be devastating to the possibility of rehabilitation/recovery.
On the other hand, (as I’ve explained in previous posts) I no longer seem to have the psychic energy for this kind hope, after years of relying on so many unsuccessful (reasonable and unreasonable) treatments and remembering, like Brenda Brown Elliot, “the excitement of thinking we’d made a breakthrough, only to have those hopes dashed in various ways.”
I groan along with Sara R: just thinking about another possible protocol “makes me feel, Ugh!” Nathalie Langevin agrees:
“What hurts me the most is hope. I flew so high on its wings and fell so hard that I sometimes think that all those pains I have come from those imaginary bones I broke.”
What is hope? My English teacher soul reaches for the dictionary. Mirriam Webster defines the verb hope as “to cherish a desire with anticipation. . .to desire with expectation of obtainment. . .to expect with confidence. “ The noun is “the feeling of wanting something to happen and thinking that it could happen: a feeling that something good will happen or be true.”
In “Sources of Hope in Chronic Illness,” Catherine Garrett explains that “when our desire is cut off from the expectation of its fulfillment, we suffer. Chronic illness is a type of constant and continuing suffering.” When medical science does not find a remedy, hope, therefore, must come from something else.
That “something else” she defines as “healing”, which is a transformative process that includes the physical, emotional, spiritual and psychological self. She rejects the reduction of hope as an aspect of will, positive thinking, “as if hope allows one to ‘will’ a change in the course of the disease in the body. Blaming the victim for not being positive enough.” And encouraging the “victim” to blame her/him self, and spiral down even further into despair.
Instead, Garrett offers an alternative to despair, an alternative to believing our selves as diminished, to measuring “self-worth in terms of independence and hard work, virtues difficult to achieve in chronic illness.” That alternative involves our increased awareness of the suffering of others through our own suffering, so that we find ways to reduce their suffering and take responsibility for each other. “We abandon the egotistical self for the far greater freedom and connectedness of the altruistic self.” Knowing that this transformation is possible through real examples from people’s lives “are the sources of hope.”
I don’t know about you, but I’m not one of those people thankful for the insights and understandings and greater maturity and empathy and compassion and personal growth and humility brought on by my sickness. I think I was pretty mature and insightful and compassionate, etc. when I was well. I’m not grateful for ME/CFS. It hasn’t been a blessing. And I absolutely do not have the strength and vitality to physically help others, beyond maybe writing a check for a charitable contribution.
I don’t disbelieve that others have experienced this kind of transformation. In fact, in the 80’s, when I fell down the stairs and broke both my ankles and lay immobile and in pain in a hospital bed on the first floor of our house without a bathroom (try using a commode with visitors in the next room), I think I gained an awareness of the importance of community and caring (and a sense of my own resilience) that I hadn’t had before. BUT I RECOVERED. And I never felt my basic life energy sapped, which, I think, makes ME/CFS uniquely awful.
I just know that for me, chronic illness has not opened my eyes and my heart any more than they already were.
Yet I do believe in the possibility of reaching a kind of “accommodation” with ME/CFS when you are, like me and many of the responders to my last post, of a certain age and “approaching the giving up after many knockbacks” (to quote Hope). But I don’t think “hope”, in the common use of the word, is available to me.
I thank my friend Valerie Free for helping me work through my thoughts about “hope”. I agree with her view that “hope” requires mental strength and depends so much on your circumstances. These circumstances include your individual physical condition, your family, your friends, the society and culture you live in, and the state of medicine. Many of us face a daily battle in the midst of unrelenting physical illness, debilitating weakness, psychic malaise, and an indifferent or even hostile environment.
Other illnesses are validated by recognition, respect and research. We all know the ME/CFS story told by Hillary Johnson in Osler’s Web of the U.S. medical establishment’s long history of denial and unwillingness to provide necessary funding. And so many of us have been subjected, like Nan Talbot, to foolish doctors with their disbelief and condescension (“Your bra strap is too tight. You’re crazy. You’re a hypochondriac. You’ve obviously been abused. And some just sneered or laughed or yelled.”)
Bromides about the need for hope lead to the same ‘blaming the victim’ phenomenon described by Catherine Garrett above. When you are despondent and hear “Stay Positive!”, what are you supposed to do? Oh, okay. I’ll turn on my hope-switch.
I wonder, however, if there’s another possibility for us. Many of the responders to my blog talk about something they describe in different ways:
Pat has found a different kind of liberation:
“There is something very liberating, however, in not being focused on the outcome of a treatment but being focused instead on living the life I have in ways that bring me the most satisfaction. There is still great joy in loving and spending time with family and friends and being able to capture the moments with my grandchildren who are so filled with promise for the future. “
“I think there comes a time in everyone’s life when you’ve got to stop looking for answers and try to make the best of what you’ve got – especially when you’re of a more ‘mature’ age (I turned 60 a couple of weeks ago) adhering to a specific diet which suits me, plenty of fresh herbs and lots of fresh water, slow walking on a regular basis 2-3 times a week and spending time with a hobby I love that has been the best treatment of all.”
Esther Siebert doesn’t expect a cure in time for her.
“This has brought me much peace – living the life I have rather than the one I grieved for so many years.”
“would like to share the optimism which others have, but I do not. Instead of hoping, I work on accepting.”
Dee explains that
“I am not giving up, I am just giving in. . .hopelessness is all too often a strong emotion that overwhelms me when I allow it to.”
In an especially inspiring and articulate post, Linda Reed emphasizes gratitude and humor:
“Each day I focus on being grateful. And for the days when this brutal Wyoming weather has me on my knees, I count my small blessings. Some days it’s hard to find them. Always my husband and my omnipotent poodle. . .I don’t live in a war torn country, somehow I got disability the first time I tried. . .my bed-head, scare-hair has finally been subdued. I laugh at myself, I have to. . .somehow day by day, I’ve tied a knot and held on. And I intend to keep doing so. The days I think I can’t endure the pain, the IBS has me bathroom bound, my brain won’t function, and I’m unfit for human consumption, somehow something keeps me going.”
“After spending thousands of dollars and feeling intense disappointment after each new treatment, doctor, healer, diet, supplement, etc. . .” Barbara has “also decided to just ‘Be’. . .I cry when I need to, missing my old life and accepting this life.”
Nan Talbot talks of
“acceptance with a hopeful eye to the future. . .take care of yourself the best you can and watch the birds, listen to music, watch TV if that’s your thing – just do whatever it takes to enjoy life in your new diminished capacity.”
OM also has found that “My life is limited, but in many ways I have come to accept the limitations and enjoy my life within them.”
And Barb says, “Now I do what I can and then have a Shiraz.” (!)
Clearly, these writers rely on acceptance rather than hope. Though a negative reaction to this reliance might be an accusation of admitting defeat and “giving up”, Buddhists see things differently: They offer the solace and peace found in surrendering, in not fighting against a “what is” which cannot be changed. For Christian Godbout, this is resorting to “a spiritual way of living with this illness and nothing else. And that is not giving up, it is resorting to an alternative quest.”
But I still demur. Where is my “acceptance” button? My attempts to meditate haven’t achieved much beyond some quiet moments, which I value but which haven’t affected my larger mental attitudes.
I think that for me, acceptance is possible because I still experience pleasure, which is not a matter of my will: Pleasure from my 15 month-old grandson Ira who is just beginning to walk — no matter how lousy I feel, I still giggle spontaneously at his antics; from my sons’ hilarious banter; from my daughter-in-law Holly’s warmth and caring; from preparing a meal when I can; from watching a good movie with my beloved husband and a bag of salty popcorn; from moments of illumination during a book club meeting. (I actually can’t wait for tonight’s final episode of True Detective despite my plot-brain-fog.)
This pleasure or delight may not be as intense and uncomplicated as during my earlier healthy life, but it exists and is the source of my “hope” now. I do not hope for a cure or a radical positive change in my condition; instead I believe in the possibility of pleasurable moments. And I believe that this is a learned response. My body knows what pleasure feels like from my past life, and continues to feel it in spite of this debilitating chronic illness. I don’t really have to work at it.
” I am most open to feeling these (pleasurable) moments when I can stop wanting things to be different” Carol Lefelt
This was not always true. During the earliest years of ME/CFS, I experienced pretty severe “anhedonia,” a depression in which a person is unable to feel pleasure at all. Time and the antidepressant Lexapro helped.
Even today, when a bad crash wreaks havoc, I can descend into some pretty deep misery, but experience has reinforced the conviction that relief will come with rest and that’s where I can hope – not for release from disease but from restoration of pleasurable moments within the life I have now. I am most open to feeling these moments when I can stop wanting things to be different, which helps me to overcome what Tory calls the “addiction” to the search for a cure.
I love Nancy Duray’s metaphor:
“So what do I do? I live like I’ve got a handicap (I do) and walk through the mine fields like a well trained military dog, sniffing out the IEDs, careful to ‘live’ the life I have and not step on a dirty bomb.”
Implicit in her metaphor is the truth that this is an endless process of learning and re-learning, not a complete and final transformation.
- Check out more of Carol’s blogs here.