On Oct 31, I recorded this in one take into the microphone with no edits. I hope you’ll take some time to slow down and listen. (17 minutes). The full transcript is below, but the audio is what I suggest. ❤️ Hal. Big thanks to
for the photos.
Good News
Hey, we're back.
My name is Hal, and this is the “Living in a Body” podcast.
For those of you are that are new, I'm Hal Walker. They call me the ‘slow talker’. Kind of a legend in my own head. (lol…) Sorry. Actually, just a humble guy. Mostly bed-bound, trying to make it through some very challenging circumstances. Living with a brutal version of ME/CFS, myalgic encephalo-fuckin’-myelitis, also known as chronic-fuck you-fatigue syndrome.
Just so you know, this podcast does not usually have bad words in it, but I'm in a mood, so you'll have to apologize for me…. Or so I apologize ahead of time, I mean. Today's episode 95 is called “Good News.” Gooood news. The subtitle is, “…But There was a Hat. Where's the Hat?” It starts with a story. It goes like this.
So there's a mom and a son, a young son hanging out at the beach. The mom is all dressed up with her nice sun hat and her very appropriate swimwear, covers up nicely. They've got their sunscreen on. They've got their little lunch bag and sand buckets, and the little cute boy is dressed up in the sailors outfit. He's absolutely adorable. He's got a sailor's hat, little blue sailors suit on and the day is going swimmingly. Then a big wave comes along and sweeps the boy into the sea, and the mom freaks out, as you would expect any mom to do. “Oh, my god, I can't swim”.
“My son, my three year old son, has been swept into the ocean, and he's drowning, and I can't swim!” And fortunately, fortunately for everybody, there was a lifeguard who popped up out of his chair, swam into the water, saved the boy, brought him back onto the shore, reunited him with his mom, and the mom says “Oh, but he had a hat.” (lol) That's the story. “Oh, but he had a hat. Where's the hat?”
I'm not sure exactly how this story relates to my story, but I heard this story this morning and it made me smile. It's a story about being grateful for your son's life being saved, but then complaining to the life guard because he lost the cute little sailor's hat.
I had an amazing experience yesterday that I'd like to share with you. It begins with a friendship that I made last year with a woman named Annette who is a Quaker. And as you may know, I have high regard for Quakers. And if you know any Quakers, they're a special sort. They're a special sort. And Annette is a special Quaker, among other things. She reached out to me when I was quite unwell last year and asked if she could visit. And she visited, and we sat quietly together in waiting worship, waiting for the still, small voice, and we did this day after day, week after week, as she would sit by my bedside. We sat and waited.
Annette and I became really good friends. We discovered that we have a similar sense of humor. We discovered that we have a similar outlook upon spirituality and God. We just discovered that we like each other, and it was, it's just been a real blessing. And then when all hell started breakin’ loose, Annette became a very important role in my life, which is kind of like a health advocate. She never asked for the job. She never signed up for the job, but she showed up. She showed up and started helping. And Annette, just so you know, I am forever grateful. My whole family is forever grateful. You are a life saver.
I told Annette yesterday, “Annette,” I said, “Annette, I don't know where I'd be without you. I would probably be destitute, living in a cardboard box, barely surviving”. But that's maybe an exaggeration. The point is, Annette has been a real blessing in my life. She has witnessed the… she has witnessed the difficulty of my situation, the fucked-ness of my situation.
You know, there are times when I say to myself, “Hal, you're fucked”. My sponsor doesn't go along with that. He said, “Hal, God's got a plan. Look for the good. Trust God. Keep asking. Stay open. When one door closes, another one opens”. But honestly, if I'm being truly honest, I have this general sense that I'm fucked. (lol)
Keep it light. Easy does it.
Anyway. The point I'm trying to make is; Annette witnessed the fucked-ness of my situation and she started taking action. She reached out to an organization called Crossroads, which is an organization for palliative and hospice care. She made a connection with them and scheduled an interview and yesterday a very kind woman came into my home and started telling me about Crossroads. Right away, she informed me that the palliative end of their organization is not currently running, so it's strictly hospice.
I immediately thought, “Well, I don't need hospice. I'm not dying”. But looking at my situation, from what Annette shared with her and from what I shared with her, she felt that I may be a candidate for this hospice program. She told me about it.
Apparently a nurse would visit once a week. Nurses would be on call 24/7. I could have a nurse's assistant come a couple times a week. There was counseling, grief counseling, and all the medications would be paid for, and I was waiting to find out, “Okay, who's paying for all this?” And she said, “Well, your insurance pays for it all”. And then I chuckled (lol) because she doesn't know my insurance.
I have the worst insurance possible. I go to healthcare.gov and buy the cheapest one there is because, for the most part, I have found health insurance to be useless for ME/CFS. There are very few doctors who have a clue. So why buy a bunch of healthcare insurance when no one knows anything? I'd rather spend my money on the out of the box thinkers who are willing to throw random shit at you.
(I'm sorry about all the language today. lol. Normally, I'm a very clean cut guy, kind of an angel. I must be in a mood. Anyway.)
So I said, “Who pays for all this?” And she said, “Yeah, your insurance covers everything.” I said, “Well, my insurance won't cover it.” She said, “let me look into it.” She had me sign a couple papers just to make sure I was interested. I said, “Yeah, I'm interested. I'd like to find out more about what this is all about.” She went out to her car for about a half hour while Annette ran to the CVS store, and she came back in a little while with a big smile on her face and said, “Hal, you've been accepted. You're enrolled! You're enrolled in Crossroads hospice.” (lol)
I thought, and I said, “You mean my insurance is going to pay for this?” And she said, This is what she said, listen, listen closely to this. She said:
“Well, no, your insurance is not going to pay for it. But for some people whose insurance doesn't pay for it, we like to pay for it”.
So, for whatever reason, this woman took a liking for me, felt like I was a real candidate for hospice and decided that the Crossroads organization would cover it. I was rather blown away. Like, when does that kind of thing happen? The day before, I cried for two hours about the fact that I am not being served. I feel like I do not have the health care that I need.
So suddenly, the lifeguard saves the little boy, brings him to his mother, and then the mother says, “But he had a hat”. And I'm not sure how that fits, but I'm over the moon about this, having a nurse come to my house, building a relationship with a nurse. Building a relationship with a doctor. Whatever medication I need. But the reality is, it's hospice. They're not digging in to find a solution for ME/CFS. They'll do whatever they can to make me comfortable. I'm hoping I might be able to educate them. But they're not ME/CFS specialists. They are probably very kind, very generous, Northeast Ohio nurses and doctors. Let's hope that they've even heard the word myalgic encephalo-fucking-myelitis, also known as chronic-fuck you-fatigue syndrome.
There is no easy answer. There's no known cause, no known treatment. There’s a certain fucked quality. There is a certain fucked quality to this illness. However, as my friend Emma says, “This is why we're here, this path, this path that I get, this path, even though it looks fucked on the outside. this is the path where I get to find out who I am, my true self’. This is the path where I get to go in and find out the true reality of life, not the scary dreams that my mind makes up, the true reality, the wildflower reality, the reality of the trees and the mountains where life and death exist in harmony.”
Along the way, I get this beautiful little miracle, Crossroads that comes along, Stumbles into my house and says, “yeah, we'll cover it. No cost to you.” So I'll keep you informed about what happens. I wish I were saying that, never mind(lol). I wish I were saying that “it just so happens that Crossroads are ME/CFS specialists who are going to be in my house studying me and learning everything they can to know about this illness”. But that's just the missing hat. Otherwise, I've had a life saving experience. I have more people in my corner helping out, and I've still got Annette.
We're gonna start doing more quiet time together, because we've gotten so wrapped up in all the business of healthcare, advocating for my health care. So Annette, I'm waiting for you. I'm sitting here.
Anyone else too. Let's fill my house. Come on, people, fill my house with anyone who wants to do quiet time. I'm sick of it. I'm sick of all your racing. I'm sick of all your to-do lists. I'm tired of all your thinking that all your stuff is so important. (lol) We need to do some quiet time together, man. This is the serious work. This is the work. I believe it. Quiet time is the work that needs to get done.
I'm teaching my daughter 10 minutes of mindfulness every day, not every day, but every few days. It's the highlight of my day. I get to feed her this little propaganda for 10 minutes about how important stillness is, about how important quiet is, about how important sitting in community in quiet is, and how unimportant all your to-do lists are.
I didn't mean to get all preachy and bent out of shape about that, because I know your to-do lists are important, just as important as my to-do lists. But what I'm inviting you to do is come fill my house up. Anytime you want. Have a seat. You can sit downstairs, on the front porch, on the back porch, or right here in my bedroom. It's a peaceful, quiet place. You're welcome. You're invited. No talking allowed. Only whispering.
…and I may have just said a little too much in the heat of the moment.
The fact is, you are not invited. (lol) To just stop by my house anytime you want and walk right into my bedroom. Unless you are highly spiritually evolved, and know how to how to walk into a space without causing any commotion. In that case, you're totally invited.
This is a ‘no commotion zone’. I'm hoping those nurses I get from Crossroads are spiritually evolved. I may have to teach them.
Thanks everyone for listening to my goof, my goofiness today. I appreciate it. It's a nice break from all the scary ME/CFS business that I'm taking care of. I love you. I care about you. I miss you. I'm cheering for you. I'm cheering for you. I'm praying for you. Looking forward to getting to know you better. You know… you are me. I am you, you are me. Let's do it together.
Bye, bye.
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