The Announcement
Ep. 2 - Introducing Open Medicine Foundation
Hi. My name is Hal. I’m a musician from Kent, Ohio living with severe chronic illness. In spite of ME/CFS, I have an unrelenting passion to create. The best way to support my efforts is to like, subscribe, comment and share. “Living in a Body” will come to your inbox every Saturday morning. Enjoy. ❤️
I’m an artist, not a medical research scientist, so when I was looking for a non-profit to support in my recent campaign to inform the world that ME/CFS is a thing, I sent a text to my friend Peggy. (Who is also an artist)
Peggy Munson has been bedridden with severe ME/CFS since 1992 and I would trust her with my life. She edited the first book that I ever bought on the subject — “Stricken. Voices of the hidden epidemic of CFS.” Interestingly, Peggy and I share the Spring of ’92 in Ohio as the time and place of the original onset of our illness. We’ve been exchanging voice memos since my symptoms took a turn for the worse in August. Someday, we’re gonna write a book together called “Peggy and Hal.”
Peggy is much more knowledgable than I in the world of ME/CFS, so when she said “OMF” that was all I needed. I was all in for Open Medicine Foundation. Without even going to the website, I started doing fundraisers on my Facebook posts and you guys helped raise a bunch of money for the cause. I guess that’s just kinda how I roll. I generally don’t have the patience to “go to a website” and start figuring out all those words. I’m the kind of guy that gets a hunch and jumps in with both feet. I’m not proud of it, but these days, if you want to teach me something, give me a 30 second Tik-Tok video to watch.
Speaking of TikTok… in 2022, if you want to get a message out to the next generation of movers and shakers in the world, it seems that you almost have to be on TikTok. Take me for instance. I’m a chronically ill 56 year old musician with two basic messages: “hey everybody, look at me!” and “hey everybody, you can do it too!” Somehow or other, my message has struck a vein among the 16-24 year old crowd. In the last 30 days, while I was lying here in bed, I’ve had over 85 million views on TikTok! Truly, I don’t mention this to brag. I just think the timing of it all is rather absurd. I mean, I’ve been trying to get famous my whole life and now I finally get famous and I’m confined to my house and my bed and I don’t even have the strength to make music. (OK…Let’s all laugh out loud for a minute right now together 🤣) When I think about the numbers, the kind of reach that I currently have on TikTok is mind blowing. Speaking of reach, I think it may be time for me to reach out to Open Medicine Foundation and offer my services as their official Tiktok Representative. Join me in envisioning the work we could all do together to spread awareness of this illness.
“I guess that’s just kinda how I roll. I generally don’t have the patience to “go to a website” and try to figure out all those words. I’m the kind of guy that gets a hunch and jumps in with both feet. ” Hal Walker, 30 year survivor of ME/CFS
Over the last few months, some amazing people in my life conceived of and delivered a benefit concert/GoFundMe campaign in support of myself and Open Medicine Foundation. While they were busy meeting on Zoom, contacting musicians and dividing up tasks, I was busy going through the traumatic transition from being a fully independent adult to being “the guy in the wheelchair” who needs full-time care. I heard distant inklings of the big plans, but I was mostly in the dark. (Literally) There were times when I questioned whether or not I would survive to that eternally far-off date of Jan. 7. But as my granny, Alvida used to say, “Set a date and it will come.” I’ll tell you more about Granny another time.
“Set a date and it will come.” - Alvida Tinman Walker, Birmingham, Al, 1900-1997
Well, the date did come and I did survive. In fact, for a couple weeks before the concert, I was even doing some thriving. (from my bed) I re-discovered the familiar distraction of creating social media posts to promote a concert. It was a vivid reminder of how much I crave the creative process and how painful the loss of ability to create has been over the course of the last year. Thanks to all the helpers, the concert was an incredible success. If, for whatever reason, you haven’t watched “A Love Song for Hal,” go watch it on YouTube soon. For me, it was three hours of bliss — the music, the friends, the generosity, the pure fun, the pride as Hallie sang her original song, “Dear ME/CFS.” The concert was a much appreciated excursion from the intensity of my recent reality.
On January 8th, the concert was over and I was left with the results of a successful GoFundMe campaign and the post-show reality that no matter how much money was raised, I’m still living with severe chronic illness. I still can’t go for a walk around the block, I still can’t ride my scooter over to the UU church of Kent to indulge in what I lovingly refer to as the best acoustics in Ohio and I still can’t hop down to the Kent Natural Foods store to take in that nice KNF co-op smell with all those nice KNF co-op people. On the other hand, the success of the GoFundMe campaign is a godsend for me. To be honest, I’m not sure what I’d be doing right now without it. I often wonder how the people living with ME/CFS without the kind of support that I have are surviving. I was left with a two-fold decision — first of all, for what amount do I write the check that was promised to OMF and second of all, do I announce that amount to the public?
Fortunately, I’m on a never-ending text chain with my three amazingly wise sisters. The SIBS message exchange with Julia, Johanna and Caroline has guided me well through challenging life choices lately that have ranged from “should I take the half-dose of Ativan now or later?” to “You guys, I’m dyin’ over here… I think it might be time for a full-time caretaker.” and “OMG! What’s going on with Randall and Beth in the latest episode of ‘This is Us!?’”
After some debate, multiple conversations and and a careful look at the (very user friendly) OMF website, I’ve made a decision…
Balancing my own needs with my desire to honor the world-wide population of people living with ME/CFS, I’ve decided to donate 15% of the ongoing funds raised in the GoFundMe to Open Medicine Foundation.
My friend Tammy Eldridge, who knows a lot more than me, writes:
“I like OMF for several reasons, but the main one is that they are driven by excellent researchers who have a very good reputation in the medical field, and what they say gets listened to outside of the ME medical community. Ron Davis heads it up, and you may know that he was one of the directors of the Human Genome Project. Because of his experience, there are a lot of prestigious researchers on OMF's board. And as far as I know, the research they do is excellent, and follow paths that I feel are encouraging. Some of my favorite researchers, such as Chris Armstrong, have joined OMF to work there. There are articles and a book about Ron's ME efforts, which are for his severely disabled son, Whitney DaFoe. If you're interested, I can send you some of that info. The book about him is called, ‘The Puzzle Solver.’” - Tammy Eldridge, lifelong survivor of ME/CFS.
Also, as you see, I decided to announce publicly the amount. For one, I do this because the money came out of YOUR pockets. I hope you can rest assured knowing that your donation is not only helping me tremendously but also going to a desperately needed worldwide cause. Secondly, I do this to call attention to the reality that while $15,000.00 is a big number in my world (and possibly yours), it’s a mere drop in the bucket for an organization like OMF to do the work they need to do. I realize that every little bit counts, but this organization deserves $15,000,000.00 to do the work comparable to the number of people suffering with this illness. Here’s a graph that aptly illustrates the disparity of funding for ME/CFS. Click here to read the full report with sources.
Thirdly, I do this because I’m building a community on my new favorite platform, Substack. I figured this would be a good story to get this weekly series off to a vibrant start. I truly appreciate that you showed up here and took the time to read this far. I hope that what I offer will range from the deeply personal to the universally relatable and everything in between. Hopefully with the Podcast possibilities of this platform, I’ll even be laying some music tracks for you to enjoy. Please engage with me here. Like, share, comment, create your own Substack and as my new friend Lizzie says so heart wrenchingly,
“I’m glad to be here for the countless people around the world that have been suffering in silence… Please continue conversations about us and ME.” Elizabeth G. Mooney, seven year survivor of ME/CFS, age 16.
Be it the will of the unfolding, I’ll see you here next Saturday. I’m not sure what I’m gonna write about yet, but let’s hope for the best. Again, I appreciate you, Hal
Postscript: I just had a great phone conversation with Linda, the CEO at OMF and Rebecca, the social media manager there. We brainstormed all kinds of great ideas about how I can be the TikTok “ambassador” of OMF. For instance, if each of my TikTok followers donated one dollar, Open Medicine Foundation would have $1,535,279.00. Here we go…
I love this! Looking forward to more.
Love this article!