Please join me in supporting the joint efforts of Open Medicine Foundation and The Bateman Horne Center to create the Medical Education Resource Center (MERC)—a program dedicated to training healthcare professionals worldwide in diagnosing and treating ME/CFS and related conditions.
An Illness Without a Doctor
In the spring of 1991, I was 26 years old. On that Friday, I ran six miles, took a shower and put on my big, brown sweater to wear to the open poetry reading at Brady's Cafe.
The next morning, I woke up with weird symptoms in my body. Suddenly, I couldn't run across the street without getting dizzy and weak and exhausted. Those symptoms never went away.
I told my dad and he took me to the doctor — his internal medicine doctor in Akron. I don’t remember much about that appointment, but I’m sure he took a bunch of blood tests and I’m sure they all came back normal. I've been going to doctors ever since. That's 34 years of doctors. That's 34 years of all kinds of tests just to rule things out. And they always came back normal.
Somewhere along the road, I came across the phrase “chronic fatigue syndrome” and after reading a few of the stories, I knew that's what I had. But I kept going to doctors. I kept hoping one of ‘em might help me. I kept hoping that one of them might say, “Yeah. It sounds like you have Chronic Fatigue Syndrome and here’s what you should do about it.” But, they just kept taking more tests.
I had an appointment with my rheumatologist yesterday. My expectations were very low, but I was glad to have the appointment.
I started going to see this guy about 10 years ago. In 2013, I almost died in a rogue wave in Kauai. And I came home and experienced a terrifying wave of psoriatic arthritis sweeping through my body. That was when I met my rheumatologist for the first time. That's his specialty — autoimmune conditions. Psoriasis and psoriatic arthritis are a couple of my co-morbidities living with ME/CFS. I remember loving the confidence with which he went around to all my joints as if he was looking for something. I trusted this guy. He’s an attractive guy with a turbin on and a real nice smile.
And yesterday, in the course of the visit, I said, “Hey, what about ME/CFS?” You know, I told him my situation. I'm bedbound. I rarely stand up. I use a wheelchair to go from my bed to the bathroom. I’m having difficulty eating, weakness in my lungs and weakness in my gut. He listened and he wrote down everything I said in his little laptop there. So I said, “What about ME/CFS?” And he said, “Would you spell that?” Those were his exact words. “Would you spell that?” And I chuckled on the inside. (lol) You got to be kidding me, right? But I wasn't surprised. I don't blame him, so I spelled it. I said, “myalgic, M, Y, A, L, G, I, C, encephalomyelitis.”
You know, I live in the world of ME/CFS. I write a podcast that mentions ME/CFS every week. My whole life revolves around this illness. I'm part of a support group on Zoom, 100 people on there all living with ME/CFS. And, one of the most relatable hashtag in my life is #millionsmissing. My girlfriend has ME/CFS.
My rheumatologist, though, it's not on his radar. Apparently, he hasn’t been listening to “Living in a Body.” He had to do a little Google search for the illness while we sat there. And that's not an unfamiliar story. That's been the story for all these years — 34 years of doctors. They've never heard of myalgic encephalomyelitis, also known as chronic fatigue syndrome. Or if they have, they don't know what to do about it.
So we're left on our own. We're left to figure it out on our own. One of the most debilitating, complex, multi-system illnesses in existence. And it's almost impossible to find a doctor that knows anything.
I've been having major difficulty eating. In fact, I've been having crashes after eating. It's terrifying. It’s coming down to I have to eat little tiny bits at a time. What happens is, I'll eat a meal. It feels good going down. I'm hungry, but a half hour later, it turns into chaos in my belly. And then I start praying that I don't have a crash. Today, I had one — after lunch. It's devastating. It's devastating to have a crash. Every one brings me into deeper illness and I just keep adjusting. The fact that it's now around eating?! Where do I go? What doctor do I go to help? Do I go to the gastroenterologist and explain what a crash is? He's never heard of a crash — probably never heard of ME/CFS.
Or do I just try to figure this out on my own?
Unfortunately, I'm pretty much resolved that I got to figure it out on my own. Though I did call to make an appointment with a gastroenterologist today. We'll see how that goes. I hope they do virtual visits, ‘cause I can't leave the house. All these specialists I could see at the Cleveland Clinic — the rheumatologist, the neurologist, the gastroenterologist. They don't know anything about ME/CFS.
On the Cleveland Clinic website, if you look up ME/CFS, the specialists you're supposed to go to is your primary. (lol) That deserves a little chuckle, doesn't it? I mean, I love a primary doctor. They're the front lines, but we're talking about a complex, multi system illness in a very severe form. I don't know about your primary, but my primary mainly knows about strep throat and the common cold, but apparently, your primary is supposed to teach you the basics of — I don't know what (lol).
I don’t know. I know this is kind of a downer, but I want to say one thing.
I got an email today from Open Medicine Foundation and The Bateman Horne Center. Those are two institutions that I have a lot of respect for and I'll warn you now that I'm going to invite you to donate to their bake sale at the end of this post. So get your wallet ready. I really want to call your attention to this email, because I think it's something worth supporting. It says “transforming ME/CFS Care, the Medical Education Resource Center. Open Medicine Foundation and The Bateman Horne Center partnered to create the Medical Education Resource Center (MERC), a program dedicated to training healthcare professionals worldwide in diagnosing and treating ME/CFS and related conditions.”
That sounds like a worthwhile cause to me.
See, I didn't feel capable of educating my rheumatologist about ME/CFS. The truth is I was scared and insecure. I’ve always been that way with doctors. I’m just an old hippie folk singer from the 90s. But I trust these guys to do the right kind of education. That's really what we need. We need to educate the medical professionals.
“Realizing our vision requires networking and dissemination among institutions and professional associates. As this process takes place, many are still without informed medical care in their local community.” That's me. Hal Walker. Your friend. Here in Kent, Ohio. So there's a whole series of resources to teach health care providers about ME/CFS. And you can donate to MERC, Medical Education Resource Center.
I think I'll probably donate after I talk to my sponsor, because I don't spend any money before just talking to my sponsor. It works really well. I'm not pushing the purchase button in the middle of the night like I used to. You know, I always pause, pause before spending. Pause before donating. Get someone else's opinion — someone I trust, like my sponsor.
Well, there's one other little bright spot of my day that I'd like to share with you to brighten this post up a little bit.
You know, Elanor Nadorff is making a film about me. Well, Emma opened up YouTube and came across this video that Elanor had just posted and Emma shared it with me. It's so beautiful. It's such a delight. Elanor is such a delight. In this video, Elanor tells her story of going in search of a piece of video footage of me filmed back in 2004 and her artistic process and passion to go in search of the material. It's a great story she tells. I encourage you to watch. It's 10 minutes on YouTube, and I'll leave it here.
I don't know everyone. I'm scared. This is the part where I get honest. I'm scared. I'm terrified. I don't know what to do. I keep getting worse and I don't know how to stop it. I don't know what to do about this eating problem. It's very serious… and I feel like I'm on my own to figure it out and I'm scared and frustrated. And, uh, one of the reasons I want to make this Substack is just to say, “Please, somebody do something about this. This is insane. Somebody do something. Someone tell me what to do.” Actually, don't tell me what to do. It's overwhelming when people start telling me all their ideas. So I'm not looking for that, but I just want somebody who knows something to help me. And I'm afraid to say, I don't think anybody knows anything, even the specialists.
But I'm left with just the spiritual solution of acceptance, gratitude, prayer, being of service wherever I can be. The 24 hours a day book today says, “So arise from earth’s bonds, from depression, distrust, fear, and all that hinders your new life. Arise to beauty, joy, peace, and work inspired by love. Rise from death to life. You do not even need to fear death.”
Yep. That’s what I’m talking about. (lol) Don’t even need to fear death. That’s what I want… letting go of the self. You know, “free me from the bondage of self so that I can do thy will.” I don't know what God's will is for me laying here in this bed, but it's quite a journey. I sure would prefer a different journey, God. I’d prefer a different adventure. This one's too hard.
I want the adventure where I get in the plane and fly over to see Emma in Warwickshire, England, and then we go up to… Glastonbury — hang out with the hippies in Glastonbury, and I get to practice my English accent with real English people, and then go along the coast, the English coast. I've never even been to England before. But instead, I get to be here writhing in my bed, trying to figure out how much Ativan to take, trying to figure out how to eat without crashing, pretty much all on my own.
You know, I've got a lot of support. I'm grateful for my friends and my family and my online communities, and my 12-step community and the guy who saves my life every day, my full time caregiver, Mango.
Okay, that's it for now. I wish I had more uplifting stuff to say, but the point of this whole Substack was just to say, “this is insane, such a serious illness to have no doctors.” There are specialists out there, but they're hard to get and They don't really know anything either. They don't have much to offer either. I went to one. The nicest thing about that was I told her my story for about 10 minutes, and she said, “Yep, you have ME/CFS.” First Doctor ever to tell me in 35 years that I have ME/CFS. I appreciated that. I've known it the whole time.
I've been to a lot of different — trying a lot of different alternative medicine approaches. It's been 35 years, I've tried everything. The interesting thing about the alternative medicine doctors is they always have real confidence. “Oh yeah, we can take care of this one. Just do this, take these little pills and take these little concoctions. I've seen this before. I think I can help you.” I kind of prefer the ones that say, “Listen, you're fucked, but let's try everything.”
I'm just feeling frustrated and scared and wanted to connect with you. I miss making these podcasts so much. I miss it when I'm not doing it, but I've been too sick. I don't know when the next one's gonna be, but I sure appreciate your support. I appreciate you listening.
Wish me luck once this adrenaline runs out. You know, the crazy thing about a crash is that immediately after a crash, I feel better. That's how I know I crashed. If a few minutes after it, I feel better. ‘Cause it means there's adrenaline rushing through my body, which means tomorrow is going to be a wired, insane day. The following day after that could potentially be the hardest day of my life. I keep having those over and over again.
This is the reality of ME/CFS. It's a real illness and there are no doctors.
I love you guys. Come on. Somebody figure this out. (lol) Somebody do something. Please. Pleeease. Donate to MERC, maybe that'll help.
All right, bye, bye.
I'm supposed to end on a positive note saying, hey, remember you got a body. Go live in it.
I love you. Bye.
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