Beck Weathers came about as close to dying and still survive as is possible in the Death Zone of Mt. Everest. Left for dead three times, Weathers managed to claw his way to camp and eventually get down the mountain with the help of a miraculous helicopter rescue.
Weathers lost his hands but regained his relationships. He called it an excellent trade-off.
Twenty years later, Weathers is still telling the world about the insights he gained on the mountain about the hollowness of success and the importance of relationships. Weathers’s hard-gained insights could apply to anyone but they might have special meaning for ME/CFS/FM patients stuck on their own Everests.
RESET
Weathers said his near-death experience gave him a chance to “reset his life” and make up his relationship with his family. Twenty years later, he remains happily married and considers the loss of his hands a small price to pay for his renewed relationship with his family.
Relationships
Beck was lucky: his family was willing and ready to return to him once he turned to them. People with ME/CFS/FM are not always so lucky. How to deal with loss or estrangement when it involves our significant others, family and friends?
Relationships, of course, can and often do get hit hard by ME/CFS/FM. Nobody, neither the patient nor the caregiver nor the significant other, is prepared for the changes that occur when one person has a chronic illness – particularly one as difficult or mysterious as ME/CFS/FM.
Relationships can shatter, leaving significant others and family members estranged and a person with ME/CFS/FM bitter, stressed-out and angry. That’s not a good state to be in for anyone with a disease that affects the stress response system.
Chronic fatigue syndrome (ME/CFS) and fibromyalgia are controversial illnesses that can produce misunderstandings, ruptures in important relationships, anger and just plain mistakes. In one memorable part of Unrest, a husband left his wife because he thought he was enabling her. He believed that leaving her would force her to get moving again and once she did that she would be fine. (That didn’t work out. He later apologized).
Some compassion for what they are going through might help. Cognitively challenged, fatigued, unable to participate in many activities, we’re not the same people that we used to be. The lives our significant others or family members envisioned having with us have mostly disappeared. That’s an incredibly hard adjustment to make, and compassion for those dealing with it can help.
Toni Bernard suggests letting go the expectations and demands we have that people behave a certain way. She points out that they often do not! Cultivating equanimity – the understanding that people come from different backgrounds, have their own life histories, etc. which affect their thoughts and actions – can provide some relief.
Toni found that letting go of the hidden ideal that everyone should understand our illness and be supportive brought her relief. (Check out any other hidden impossible ideals (even for the healthy) that may be causing distress…that you should be on top of everything, that you should never mess up, that you should be the go-to gal or guy, or the always supportive spouse, and then try letting them them go.)
One possibility I discovered in Landmark Education courses is to embrace the idea that our relationship with anyone is always wholly dependent on us. That it is possible – not easy – but possible to have a loving or at least neutral relationship with someone who is angry or estranged from you. A famous Buddhist loving-kindness meditation first sends love and kindness to ourselves, then to a loved one, then to a neutral person and finally to a person we’re angry with. As Toni points out trying to understand where they’re coming from (frustrated?, confused?, overwhelmed?) is a good first step.
Letting Go
Weathers had been obsessed by his work and he’d been successful; he’d made a lot of money. Confronting death on the mountain, though, he realized that the drive to succeed, to look good – although it had taken up the vast amount of his time – was ultimately pretty meaningless.
“As I’ve grown older, I gradually achieved a state of peace and no longer define myself by success and goals or really anything external.” Beck Weathers
By the nature of their disease, many – if not everybody with ME/CFS/FM – have to come to grips with “letting go”: letting go of their ambitions, their desire for their life to turn out the way they want it to turn out, their expectations…
In Death Valley, Julie Rehmeyer let go of her pursuit of personal success and felt a new kind of contentment.
At the end of her rope in Death Valley, Julie Rehmeyer let go. Humbled by the enormity of what she was experiencing, she realized that even as she became sicker and sicker, the hamster wheel of success still dominated her life. Finally, she declared that her striving was over, let her ambitions, plans and desires go – and felt an immense relief.
I couldn’t keep everything together as I had been doing for years, holding on to my responsibilities and dreams in spite of the barriers my illness threw in my path. Whether the experiment worked or didn’t, the life I had lived was over. I was staring into a cavernous darkness, beyond any imagined future I could invent. I wrapped my arms around my dog and closed my eyes. Okay, I thought. Whatever is next, okay.
Julie’s ability to give it all up – her ambitions, her desire to succeed, even the desire for her life to be different – opened a new space up for her. For the first time in years, she felt content.
The contentment felt unfamiliar, even a bit shocking. An anxious internal drive had prodded me forever, but I only noticed it in the desert, once it was gone…I had always imagined that contentment would come as the natural end product of accomplishing my goals, but I never seemed to get there…
With all my assumed obligations removed life seemed unimaginably spacious. Just being alive was a thrill, a blessing, a tiny miracle beyond my expectation or control…
How to live with a life turned upside down? Painting by Ted Johnson.
Having to be “successful” is an incredibly powerful pull – one that does not necessarily disappear once one gets sick. As Beck Weathers found out, success is a chimera. He realized he was on track to be “successful”, alone and unhappy.
In her book, “How to Live Well with Chronic Pain and Illness: A Mindful Guide“, Toni Bernhard talks about “Making Peace with a Life Upside Down”.
That chapter starts out with some “not supposed to’s”: you’re not supposed to fall sick on vacation (let alone a vacation to Paris). You’re not supposed to get ill – particularly when young!
Despite the fact that illness does inevitably happen to a certain segment of the population, it’s never supposed to happen to us.
We’re not supposed to be unable to work, or clean the house, or see friends, or go out with the kids. It’s easy to spend years, decades even, ruminating over the many “not supposed to’s” or the “supposed to’s” that have been shattered by these diseases.
That, however, is the path to resentment, anger and isolation, and – studies have found – increased pain and fatigue. Bernhard, like Rehmeyer, felt a sense of relief and contentment when she was able to drop the “supposed to’s” and just accepted – fully accepted – her life as it was.
“I vividly remember the first moment when I accepted my life as it is – chronic illness included. I felt a huge burden lift. For the first time since I became sick, the conviction that I absolutely needed to recover my health in order to ever be happy again was absent.”
She promised that mindfulness can produce something extraordinary:
“We can learn not to be lost in painful regrets about the lives we no longer lead, nor to be overwhelmed with fear and worry about the future. We can move from being caught in relentless stress…to a place of peace with our lives, however that life happens to be at the moment. “
In “Radical Acceptance”, Tara Brach, a Buddhist facing her own chronic illness, suggested that when faced with difficulties, we simply acknowledge them by saying “I consent”.
Conclusion
Weathers’s story was incredibly inspiring. Like many people with ME/CFS/FM, the medical profession gave up on him, and in fact, signed off on his death warrant. Against all odds, though, Weathers was able to survive.
Weathers’s story indicates miracles do happen at times, that serendipity can strike, that helicopters can appear out of the mist at 20,000 feet. Unforeseen discoveries and assistance (the Pineapple Fund’s $5 million donation to the OMF) can happen. We should never discount the possibilities of miracles happening.
Although Weathers got off his mountain, most of us remain on ours. We have our Everests to deal with. Some of Weathers’s realizations while on the mountain could help make our way easier.
There was the critical need to keep putting one foot in front of the other – to stay in the game, so to speak – and not give up even when all is black. Beck shouldn’t have survived, but miracles – unexpected events – showed up. You never know what the future will bring.
There was the need to take responsibility for the mistakes he’d made in his relationships. For people with ME/CFS/FM, that might take the form of creating compassion for and forgiving those around us. Finally, there was realization of how empty striving to be a success turned out to be for Beck. That could be a profound lesson for many of us disturbed by our lack of it.
Learn more about Beck Weathers’s fight for survival atop Mt Everest:
Thank you for writing this article Cort. This has been a real struggle for me during this “never ending” journey. I’ve lost friends over this, family who does not believe, and have one person who is trying his best in our relationship to be my whole support system. It’s quite a burden to bear.
I do find a great deal of support online through your site however. Just knowing other people are dealing with these same issues helps tremendously. And also, the medical information you share is invaluable.
Not that I wish for anyone to go thru this, but to feel you are alone on top of it all, makes it even more unbearable.
Thank you for all the work you do for this disease, and for Health Rising.
Your Fan
Lisa Murphy
Thanks Lisa, I’m glad the site helps. The losses people incur are often incredible – far more than in other diseases I imagine – which is why I think finding ways to cope with them can be helpful
Wonderful article, Cort! Meaningful insights into how acceptance of our situation gratefulness for all the gifts we do have in this moment, and letting go of long held beliefs, can bring about peace with this illness, in fact peace and joy with our lives no matter what we are given.
Thank you
Thanks. It sounds counter-intuitive and that its possible to achieve peace and contentment and appreciation for the things around us when ill but as Julie and Toni have demonstrated – it is possible.
Great article, Cort. How interesting that climbing–and climbing accidents–makes such a profound metaphor for our illness.
In my first, and worst, year of illness back in 2004, laying on the couch, not able to do much else, I caught a documentary about another climbing near-death experience and miraculous survival, Touching the Void, that was deeply moving for me as a metaphor for my own losses to illness. In the film, a pair of British climbers are in Peru on a major peak when one of them is injured in a fall. Attempting to get the injured climber to safety, he is lowered over a precipice with two long lengths of rope. The knot between the ropes jams and the injured man is left dangling–just as awful weather settles in making it impossible for the pair to hear each other and now is creating life-threatening condition for the man at the top. As weather conditions deteriorate, so does the hold conditions for the man on top who knows that if his snow/ice shelf goes, they’ll both fall to their deaths. And so he has no choice but to cut the rope to save himself. The badly injured climb buddy falls–but is not killed–and with a broken leg and other sever injuries manages to crawl to safety.
It is the story of the man dragging himself to safety that struck such a chord in me. Along the way he must drop pieces of gear, his pack, all of the things that a climber needs to keep himself safe. Each letting go of his was a metaphor for each thing that I’d had to drop–exercise, social life, work, talking on the phone, many friendships themselves, dreams, abilities, ideas of who I was in the world, to others, to myself. I wept for all of his losses and my own. I strangely felt less alone, even though I knew that no one outside of my illness community could understand the parallels. The climber was “obviously” hurt, and my illness was invisible. And yet so much the same.
Fourteen years later, we have your great blog and forums, Cort, and the internet and communities to connect, but back then it was a solitary path to find our way to help.
I’ve thought of revising the movie many times over the years, but still haven’t. I do recommend it though, for all of the reasons Beck Weathers’ story applies to us too.
http://www.imdb.com/title/tt0379557/
Great food for thought, that I very much needed! I think this is why I am strangely drawn to mountaineering stories. I got ME at 24, when I was starting to realize my wildest career dreams, against many (non-health) odds. But then I began a cycle of sick/less sick and for decades, made an occupation of going above and beyond, one step after another, whether for a career, or, now, the simplest of activities. While I did a major letting go after going on disability for the last time, it is a continual process. As the small things get harder and harder, the suffering worse and worse, I see that I have another big letting go to do. I know that things can always be worse, so gratitude (and hope) will get me by, until I can accept the next lowest rung and hopefully find meaning in what’s left. I must use the fortitude that all those years taught me, in finding wholly emotional, not physical, strength to get me by.
I agree it is a continual process, a continual letting go…Good luck Sarah, climbing your mountain!
Cort,
Thanks for sharing Beck’s story. I’m certain many will find it motivating. I read Beck’s book shortly after it came out, before I got sick, and thought it was the best story of perseverance I had ever read until my own experience with me/cfs. I live near Yosemite in CA and after high school sports, competitive running, USArmy infantry, Germany 73-75, skiing, golf and anything else you’ve heard of before, in 2005 after a severe bout of flu, I was left nearly unable to walk, as well as having every other symptom on the list. Over the next two years I completed 21 months of slow, low dose oral chelation with DMSA following Andy Cutler’s protocol and saw my doctor’s data mercury levels drop from150 to 32. Even though I was never able to RTW due to strength, stamina and cognitive issues I was able to complete 25 years as an RN, mostly in the ER. and continue to work on my marriage of 39 years to my Loving, caring, beautiful wife. Your blog is the greatest thing out there for medical updates and reminders that we’re not “alone” as we slowly walk down this journey of life. Thanks Cort, not sure how you do it.
My gosh what a story. Another athlete felled! It reminds me of myself! 🙂 Thankfully I am in better shape than most. Actually I don’t know how the many people who are worse shape do it. I’m lucky! Thanks for your nice words, though.
Cort,
Every time Health Rising appears in my email I know I will be connecting with information I can actually process. Cort, you have a true gift for clarity and your writing is a lifeline. I can turn to my husband and children and tell them about the 5 million dollar donation from the Pine Foundation and about Ron Davis’s work. I asked them all to watch Unrest. I thank you and all the patient advocates with all my heart. I have had this disease on and off for 38 years, and was diagnosed correctly from the beginning. The remitting and non-remitting type of ME/CFS I had entitled me to years of functioning followed by severe disability. I’m totally bed-ridden now and I count less on those surreal days when I wake up “me”. Inexplicably FINE. Quick have my roots done. Do the dishes. Call friends. Only to be back to my sick-life the next day. But truly, I am so grateful that I was well enough to have some high-performance years. And kids and a marriage And scrapbooks. My heart breaks for all the people who fell ill before they could manifest their dreams. My hopes for a cure are for them. Nobody understands this disease who doesn’t have it. This is the curse of ME/CFS FM; the lack of understanding and shame that goes with it hurts the most. As you and Rodney Dangerfield said, “it gets no respect.”
It’s always nice to take a step back from the mountain climbing and look around. It’s a beautiful view.
Also reminds me of the time we hiked up one of the highest mountains in Lake Placid. Blizzard conditions fell upon us, and I was lucky if I could see one arm’s length in front of me. My Lyme-infected knee came back and I hobbled my way around. I concentrated on keeping within view of the guy in front of me, and making sure I didn’t slide off the icy side of the mountain. The guys had been up and down these mountains many times so I just followed them and we made it to the top. After that trip, I never went winter mountain climbing again. Really hard on a Lyme knee.