Living in a Body
Living in a Body
Telling My Story

Telling My Story

Episode 48 -- A Public Response to a Personal Email

Hi. I’m Hal. We’re celebrating ONE YEAR of “Living in a Body!” To listen to the podcast version of this publication, I hope you’ll click on the PLAY button above. Thanks for being here! Feel free to share. H


Telling My Story

The combination of the public writing life and life with chronic illness is not an easy one. I didn't choose it. I don't think anybody would. Certainly, I made choices along the way that brought me here, but it seems that these circumstances have chosen me. I guess you could say that I'm one of the lucky ones. Rendered more and more helpless over the course of the last couple years, I've been gifted with challenges and limitations that not everyone gets to face. 56 years old and living through a radical life change, this is the bonus life that I never before imagined. Who knows what kinds of good things could be waiting on the other side of it all.

The reality of my situation would be tragic if it weren't so utterly poetic. It occurs to me that I have a choice to let this reality destroy me or to let it be the greatest journey of my lifetime. Since it's not an option to go back to my glory years of 2019 and 2020 and since I really don't wanna die, today I'll choose the great journey. Happy New Year everybody. With all the blessings of 2023, I'm here to tell my story. Welcome.

In response to last week's conversation with Peggy Munson, I received a series of emails from a subscriber of this publication. Each of the subject lines were typed in all capital letters. The first read, "YOU ARE SUPPORTING ILLNESS." The body of the emails went on to say, "You and your podcast friend are self-limiting and promoting helplessness… You are confirming the hopelessness of your condition as unchangeable...You need to look to successful models and not confirmation of self limitation.... Listen to the hopeless tone of your last podcast and compare it to the MANY others online that have had promising experiences."

I have to admit that it's taken me a few days to process this series of emails. I'm still sorting it all out in my head. The ALL CAPS approach to the communication has been plaguing my serenity. I'm probably too sensitive, but I feel like the writer was shouting at me for having done something terribly wrong. But rather than letting it go, I've chosen to respond publicly. The emails bring up some interesting concepts that I'd like to explore. Especially as I celebrate a year of having produced this publication, I want to be clear about my vision for the writing. I want to be clear about what "Living in a Body" means to me.

My knee-jerk defensive reaction was to respond in all caps, "YOU HAVE NO IDEA WHAT YOU'RE TALKING ABOUT." I'm a writer and I'm here to tell my story. I'm not here to "promote" anything except honest telling of that story. Last week, I had the opportunity to share the story of my friend, Peggy Munson, a person for whom I care deeply. Peggy and I have each been living with a mystery illness for over 30 years. It's barely diagnosable. Except for the telling of our individual story, there's no proof that the illness even exists. It's a complex of weird symptoms that are equally as debilitating as they are difficult to put into words. Everyone's story is different and there are millions of people suffering. It's poorly named, "Chronic Fatigue Syndrome" or if you can pronounce it, “Myalgic Encephalomyelitis.” Nobody knows the cause and nobody knows the cure. Living with a severe version for over 30 years, Peggy Munson has survived the unimaginable and I have tremendous respect for her. It was an honor for me to share her voice here. My version of the illness has been less severe, but I've gotta hand it to myself. I'm facing this challenge with resilience, open mindedness and courage. The defensive part of me wants to announce, "YOU live in my body for one day, one week or one month and THEN tell me that my attitude needs to change."

If you've read the last 47 episodes, you'll see that hopelessness, grief and self-pity are certainly a part of my story, as is joy, gratitude, humor and possibility. My goal has been to remain truthful to the vulnerable complexity of my experience. One of the best things to come out of this devastating illness has been the discovery of my love of writing. When I'm engaged in the writing process, I find relief from what is frequently an agonizing experience of living in a body. When I'm writing these episodes, I experience purpose, meaning and great satisfaction. My hope is that you find little glimpses of your story in mine, or at least, that you find enjoyment in the sound of my sexy baritone voice on the podcast.

To be honest, I rolled my eyes at the inclusion of several Youtube links in the shouted series of emails. In one of them, Realan Agle is the person being interviewed. Apparently, she's experienced 100% recovery from ten years of being bedridden with ME/CFS. I have many questions but wow! I'm happy for her. Imagine that. A hundred percent recovery from whatever she was struggling with. I'd be happy with 20%. For 100%, I'd give away my house, everything I own and all the money in the bank. But would I click on a link that was sent by a shouting emailer? Yes. I did.

Realan is a beautiful woman who is positive and passionate about telling her story. Led by hard work, perseverance and an absolute refusal to give up, apparently Realan healed herself with diet, pacing and a change of attitude, nothing short of a miracle. I watched a bit of the YouTube video and I even clicked the link to her online course of recovery, but I've got to admit that I'm skeptical. Believe me, after 30 years of living with this illness, I've watched the promising videos. I've tried the miracle cures. I've paid the alternative practitioners. I've purchased the online healing courses. I've practiced the change of mindset. I sure would love a miracle, but my story is different than Realan's and "Living in a Body" is the platform that I use to write about it.

As you may know, my story includes a traumatic progression of the illness over the course of the last two years. During that time, I've experienced multiple sudden onsets of intensified symptoms that haven't gone away. Two years ago, I was just a super nice guy with mild symptoms enjoying the happiest years of my life. Then the shit hit the fan. Today, on top of the illness itself, I'm dealing with the grief that comes with drastic life changes. Currently, I'm in the process of adjusting to the new normal that moved into my body about a month ago. I realize that fear and negativity don't help the healing process in any way, but my brain has good reason to be afraid. It's been a rough couple years.

The third and final email explains the sender's position quite well. "No illness is final. Every condition can be healed. It took Raelan many years of suffering and disability to heal completely. She's teaching others and has support groups that are not resigned to the belief that ME/CFS is really the final word. Why would anyone even attempt to heal if they believed it to be impossible? Raelan and many others are succeeding and you can too. Her website below lays out resources and videos on YouTube."

Raelan Agle's Website

After some time has passed, my imagined response to the emailer has softened and I've removed the capital letters. "I hear you. Thanks for sharing." It's true. The sender of the emails has some good points. I agree that the medical profession has very little to offer me. I'm making an effort to believe that healing is possible. In the case of ME/CFS, it's probably my attitude that has the greatest effect on the potential for healing and my experience of the illness. I like the idea that there really is no problem here. The only problem is my thinking. My job is to smile and take an interest in the journey.

Sir, you were right. But because I'm already working on the things she has to offer, I probably won't be signing up for Raelan's support group. Besides my writing, one of my main practices is the work of retraining my brain. It's a slow process and it's the hardest work I've ever done. On some days, I'm not convinced that I'm making any progress. I admit that under the circumstances, it's much easier to fall into despair and hopelessness. I hope to keep documenting the process here on "Living in a Body."

Since we're offering suggestions, my friend, I will offer one of my own. Next time, ease up on the blaming tone and lay off the ALL CAPS subject lines. Believe me, there's a much more effective way to get your point across. Anyway, I appreciate that you care enough to offer your ideas.

Living in a Body is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.

As for all the rest of you... Thank you for your suggestions, but no, I'm not interested in CBD oil and I'm probably not gonna try the carnivore diet. I hate to disappoint you, but I probably won't be going 100% plant based either and to tell you the truth, the Medical Medium diet is just way too overwhelming for me to even wrap my brain around. I'm in basic survival mode over here. I'm grateful to say that I have a wonderful healthy food plan and a strong support system in place that's helping me through these wild times.

As for the writing, I'm here to speak my truth. It's the only thing that I have and I'm still in the process of discovering it. Every once in a while, I'll share someone else's story too. And when I do, I'll encourage them to tell their truth. That's my vision for "Living in a Body." Thank you so much for reading. Thank you for listening. I'm signing off for this week and I hope to back again next week. Have a wonderful Saturday. I miss you. I love you. See you next time. ❤️Hal

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Living in a Body
Living in a Body
Hal Walker, Ohio musician and writer living with severe ME/CFS, weaves music, stories and community from his bed.
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