Amor Fati

Living in a Body

Amor Fati

1×

0:00

-12:06

Amor Fati

Episode 30 -- Hal and ME and a Positive Spin

Hal Walker

Sep 03, 2022

Hi. I’m Hal. Welcome to “Living in a Body.” Thank you for being here. I recommend clicking the Listen Now button above. (12 min listen) Have you considered supporting my work by upgrading to a paid subscription?

Hal and ME

I was recently invited to be an ambassador of the Open Medicine Foundation. It will soon be my honor to take on this role. My job as an ambassador will be to support OMF's research efforts and to help build awareness of Myalgic Ensephalomyelitis / Chronic Fatigue Syndrome. How I choose to do that is up to me, so I came up with a big idea.

I'm starting a show called "Hal and ME." It's "a two minute show that puts a positive spin on a devastating illness." Every episode will spotlight one special person living with ME/CFS. Together, in 120 seconds, we'll bring to light the good that lives beneath the devastation. Open Medicine Foundation likes the idea and is excited to support me in this endeavor. So far, I've enjoyed making a logo and creating a Google form for submissions. I haven't made an actual episode of the show yet, but that'll be coming soon. I look forward to sharing it with you.

For the pilot season of six episodes, I’m looking for six people who are living with ME/CFS that would like to be a guest on the show. The deadline for video submissions is Oct 1, 2022. Find more details by clicking below.

Hal and ME - More Info

*Ligularia* *dentata — aka Leopard Plant*

Amor Fati

Since 1991, I've been living with a mystery illness. It's barely diagnosable. All the tests come back normal. The name they've agreed upon is difficult to pronounce and many doctors have never even heard of it. There's no known cause and no known cure. The number one cause of death for people living with it is suicide. Of all the major illnesses, it's rated as the one with the lowest quality of life. It effects all the systems in the body. There's very little funding for it. It's debilitating, it's ruthless and it's invisible. It's not an illness that I’d wish upon anyone, but it just might be one of the best things that's ever happened to me. It’s myalgic ensephalomyelitis, also known as chronic fatigue syndrome.

Lately, I feel like I’ve been turning a corner. Little by slow, my attitude is shifting from grief and despair toward acceptance and gratitude. Don't get me wrong. The painful emotions still swell up in waves, but I think I’m turning a corner. Of course, the current severity of my symptoms is in large part a determiner of my mindset. As I write these paragraphs, I'm grateful to report that I’ve experienced a series of "better" days. The ringing in my ears has quieted a bit and the intensity of my illness has eased up. Please feel free to ask again about my attitude on one of the rough days — one of the days when I'm writhing in discomfort and despising the limitations of this illness.

I read a story recently that has helped with this shift in mentality. You may know that Thomas Edison was one of the greatest inventors that ever lived. One evening, as he was having dinner with his family, a messenger rushed in to let him know that the factory was burning down. Edison's life work was going up in flames. Legend has it that when he got to the fire, he didn't grieve and he didn't panic. Edison called for his wife to bring the children and all their friends. Never again would they see such a spectacular display of flames and he didn't want them to miss it. The inventor brought to mind a Kipling poem that reads, "If you can meet with triumph and disaster. And treat those two impostors just the same…" Edison trusted that now the rebuilding would begin. He had faith that the necessary transformation would occur. He believed that amidst disaster, goodness continues to unfold. To be clear, I would choose losing my life's work in a fire over the onset of severe ME/CFS, but the point of Edison's story is well taken.

Upon first consideration, 2021 was a year of disaster for me. The most challenging year of my life, it was a harrowing nightmare of illness. At times, I was living in the dark, barely able to speak and unable to do most of the things that bring me joy. Living 15 minutes at a time, I experienced unpredictable onsets of intensified symptoms. Hopelessness loomed heavy. My family and friends gathered around me and I watched my life's work as a musician go up in flames.

As the dust has settled in 2022, I'm drawn to the stoic truth of ancient Greece that is amor fati, "the love of fate." The phrase encourages me and challenges me. It asks, "Are you willing to love what is? Can you greet triumph and disaster the same? And will you consider that your greatest obstacle could bring the greatest opportunity?" Well, if I don’t get to choose just to have an easier life, in each of these three regards, I reluctantly wish my answer to be, "yes."

Epictetus of ancient times said it well,

“Don’t seek for everything to happen as you wish it would, but rather wish that everything happens as it actually will— then your life will flow well.”

Referring to being a person capable of uncompromising acceptance of reality, Nietzche writes,

“…all in all and on the whole: some day I wish to be only a Yes-sayer."

In the spirit of amor fati, I say, “Bring it on, ME/CFS.” (yikes)

I have to admit. Every time I visit the Facebook page for people living with severe ME/CFS, I get terrified. The depths of the suffering that I read is heartwrenching and I fear that that level of suffering could very well be in my future. Compared to many of those stories though, I've been fortunate.

For 30 years, I lived with a mild version of this illness. Today, I have a full-time caregiver. I live in a big house with a float tank in the bathroom. I spend my days writing and most importantly of all, my symptoms have eased up a little bit lately. Coming from this place of privilege and good fortune, I’m cautious not to make light of the cruel suffering that is ME/CFS in it's most severe form. I honor people like Peggy Munson who has been living with severe ME/CFS for 30 years and who hasn’t gotten the luxury that I've been afforded. Here's Peggy now:

“…but anyway, she used to call me Dark Star, that was her nickname for me, Dark Star. Because I would always take the dark side. So I do have to say that it’s hard for me to take the other perspective on this. But also, because my M.E. is so negative, especially around caregiving. It's been so persistently negative. So it's one area in which I definitely do not share any level of privilege in terms of having stable, appropriate or healthy caregiving or caregivers. That’s been my most persistent problem for over 20 years… and not having family support and stuff like that. So, for me, most of the negative side of this illness really comes out of that. Not being able to see that from a perspective of… “What would life be like if there were just loving, supportive people in my more immediate environment all the time.” That’s just never really been true. So yeah, that's a tough one. But the humor thing is definitely less hard, even though I can't really think of anything right now. I like that angle though. I'd say that I am really positive as a person, which is kind of ironic. I mean I'm very Sagittarius. My tendency is always to look for the solution to everything. As much as I’m like a dark star, I actually find positive things, usually in everyday life.” - Peggy Munson, (website)

Thank you for sharing, Peggy. I admire you so much and I’m so grateful for our connection.

In 2022, I have an urge to celebrate the darkness that is ME/CFS. At first I was gonna write “I have an urge to shine a light on the darkness that is ME/CFS.” But then I remember that many people living with this illness are light sensitive and have to live in the dark. So instead I say, “I have an urge to celebrate the darkness that is ME/CFS.” Amor fati inspires that urge. Will I fight against reality or will I love this one life that I’m given? Most likely, I'll do both and then everything in between. But with the inspiration of Thomas Edison by my side and the spirit of amor fati in my thoughts, I take my humble place as a witness of what is. I say yes to life as it unfolds in all its wild, brutal and unexpected ways. I wonder what connections will arise when together we seek the beauty that lies beneath the suffering.

Thank you for being here. Thank you so much for reading all the way to the end. Don’t forget to spread the word. I’m looking for six people with ME/CFS who would like to be guests on my new show, “Hal and ME.” Have a great Saturday. Love, Hal