Nat & Hal

Living in a Body

Nat & Hal

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-18:12

Nat & Hal

Episode 77 - Three Letters a Piece

Hal Walker

and

Natalie Mead

Feb 17, 2024

Transcript

No transcript...

Hi. I’m Hal. Welcome to Living in a Body. This is a very special episode today. Natalie Mead from
Oops, My Brain
and I have exchanged a few letters (via email) and we’re publishing them today. Press PLAY above to listen to the podcast version of this episode. And click below to check out Natalie’s Substack. Enjoy.

Oops, My Brain

Nat and Hal

Hi Natalie.

My name's Hal Walker. I read your recent note seeking collaborators on the topics of chronic illness and humor. Well, it just so happens that I’m living with severe ME/CFS and I used to be funny, so I’d love to connect. How ‘bout we write letters back and forth to get to know each other better? I’ll start.

It’s true. In my previous life, I was really funny. I could make the whole room break out laughing. In fact, my senior year in high school, I was voted "Best Personality." The weird thing about that is that in social settings, I was always afraid of people. I felt like I didn't know enough about "current events" to carry on a conversation. I was so scared of my own silence.

I still sometimes struggle with not knowing what to say, but I've discovered that I don't need to know anything about "current events" to connect with somebody. I just need to be myself. These days, I practice being vulnerable and honest. These days, I practice telling the truth. I hope that in our collaboration, we both feel free to tell the truth. I hope we can just relax and be ourselves through our writing. I'd really like that.

I love laughing. In my previous life, I laughed a lot. I had a really heartfelt baritone laugh that would sometimes make me fall over. But I don't laugh much these days. It actually hurts my lungs too much to laugh. Due to this nasty illness, the"previous life" that I’ve been referring to seems like a distant memory. You're meeting me in the middle of the most challenging time of my life. In fact, today was one of the most challenging days of my life. I'm very sick and I'm very scared. On a regular basis, I question how I’m gonna survive this illness. It's a brutal one and it just keeps getting more brutal. From what I hear, of all the illnesses, ME/CFS is one of the rougher ones. So I cry a lot. In fact, I'm crying right now as I write this.

Well, I'm sorry there wasn't much humor in this first letter, Natalie. Maybe the funny will come out later. I'm really glad to meet you and I look forward to getting to know you better.

Sincerely, Hal

Hi Hal,

First off, I'm sorry to hear you're having a tough day. I don't know you, but I do know that chronic illness is mostly terrifying and only a little bit funny, and I think your condition is objectively more terrifying than mine. So let me start by saying: Keep holding on! There will be days that are better than this one, days where you will smile or marvel or gently chuckle.

I actually don't think of myself as a funny person. I was the awkward nerd who was obsessed with marching band, not any sort of class clown. But when I was first hospitalized with chronic migraine disorder, at the age of 27, I found myself plunged headfirst into the chaos of both a sudden-onset disability and the American medical establishment. I saw only two ways to cope: cry about it, or find the humor in it. Five years later, I still do plenty of both.

I look forward to getting to know you more, especially because you've dispelled the need for me to feign knowledge of current events. I have enough stress in my life, so I make a point of not reading the news. I think I know who Donald Trump is, and I heard that he was considering running for president a few years ago? I wonder how that turned out??

When you feel well enough to write more, I'm curious to know more about ME/CFS and your life as a disabled person. Though we're both disabled, there's a broader spectrum of disability than most people realize. What is ME/CFS, in your own words, and how does it affect your life? What metaphors, if any, do you use when describing it to others? If you were to personify it, what would that person look like, do, and say?

Hang in there, and talk soon :)

<3 Natalie

Natalie!

I so appreciate your letter. I laughed out loud twice. You are funny. You're funny in a smart kind of way. I'm funny in a more crude kind of way... like, "did he really just say that?!" I'll try to restrain myself, but I gotta warn you that I use bad words when it comes to talking about my illness. Many times, the readers of my Substack have heard me refer to myalgic-ensephalo-fuckin'-myelitis, also known as chronic-fuck you-fatigue syndrome.

Now that we've gotten that out of the way, I'll let you know that I was the son of a Presbyterian minister who rarely cursed and never told a lie. I, on the other hand, began lying, cheating and stealing at a very young age. As the only boy with three sisters, I was the prince of the family, perfect in every way. I spent much of my life trying to please everyone while veiling a secret life that I showed no one. Where I lacked in moral aptitude, I made up for in raw talent.

I got hit by the sudden onset of ME/CFS in 1991. On Friday, I was a long distance runner and an avid cyclist. Then on Saturday, I couldn't run across the street without needing to lie down. For the first 30 years, it was mild. In the last 3 years, I've learned that ME/CFS is the meanest, nastiest teacher in the school and I'm in the hardest class. She never tells us the rules and she penalizes us whenever we break them. My lying, cheating and stealing days are behind me, but ME/CFS has me over her knee and she's punishing me with no mercy.

I'm already enjoying the conversation, Natalie. You seem cool. Tell me more.

Hullo Hal,

You took my metaphor right out of my mouth! My chronic migraine disorder also feels like a persnickety school teacher. I've learned some of the class rules, but I’ve also learned that following the rules doesn't guarantee anything.

My experience with chronic migraine disorder is somewhat unique, or at least more rare, because mine was sudden-onset, much like your ME/CFS. Most people with chronic migraines start out with occasional migraine episodes that grow more frequent over time, but that wasn't my experience. My very first migraine lasted for 10 months, landed me in the hospital for 3 weeks, and disabled me from my job (I worked for Facebook at the time). Fast forward a few years and, voila! I'm chatting with you about chronic illness. But that's not such a bad outcome, now is it?

I'm wondering, does ME/CFS involve chronic pain? I don't know much about its symptoms, or even if everyone gets the same symptoms.

Also, wow...I wasn't even alive for most of 1991! :) That's a long time to deal with such a strict school teacher. On my worst days, I fear having multiple migraines a week for the rest of my life, and spending basically my entire adulthood in pain. I can't imagine making it 30+ years with chronic illness. How did you come to accept your lot in life? Do you feel like you've made peace with your condition, or are there still days when you rage against it?

<3 Natalie

Good morning Natalie,

For the first 30 years, my illness was the ineffective substitute teacher who occasionally tried to exert her dominance over the class. For the most part though, I could get away with anything. I constantly pushed the boundaries of the illness and the consequences were never all that dire. Certainly, I spent mornings in bed and even days in bed, but usually, with another good 10 minutes flat on the floor, I could recover enough to go on doing what I wanted to do. I lived a very full life with mild to moderate symptoms.

Lying on my back with my arms and legs flush to the floor became a familiar posture for me. I remember many times lying in this position in the green rooms of concert venues. But when it was time for the show, I'd stand up in front of that microphone and the magic would happen. With seemingly no effort at all, I became radiant with big musical energy. No one could ever have guessed that minutes before, I was plastered to the ground . Thanks to a healthy dose of talent, a big passion to perform and an adequate storage of adrenaline, I was the most energized guy you'd ever meet living with ME/CFS. These days, it's a whole different story though. I'm almost fully bed bound. My main symptom is a ceaseless and crushing void of energy throughout my whole body.

To be honest, I'm hesitant to start talking too much about the reality of ME/CFS. There's so much darkness and hopelessness in the subject. Phrases like "the bottomless pit of suffering," "suicide is the number one killer" and "the lowest quality of life of all the major illnesses -- including end stage cancer" haunt me and terrify me. In the last three years and especially in the last three months, I've gotten first hand experience with these concepts and I'm scared for my life.

Today, my gut feels like a twisted cluster of chaos. My arms and legs are achingly weak and my feet are cold. The ringing in my ears is constant and loud. My breathing is weak and irregular. My heartbeat races with almost no exertion. I'm having more and more difficulty speaking, eating, walking and typing. In the last three months, I've experienced "crashes" on a more than weekly basis and each one has brought me to a deeper state of illness. I live much of my life in fear of the next crash.

But I'm not in pain and I've never had a migraine, much less a migraine that lasted for 10 months. I honor you, Natalie, for your story and your survival. It has occurred to me recently that I can be of service in the world just by staying alive. It's not the kind of grand vision that I've had for myself in the past, but this illness is changing me in so many ways. For one, it's teaching me to see myself as one among many, another child of God muddling through this human experience.

Thanks to this illness, I'm connecting with you now. I'm grateful for that and I look forward to hearing more of your story. Hey, let’s keep writing these letters. I’ve really enjoyed it. But as we’re coming to the end of this first exchange , I'm curious… Where do you find hope?

Hal

Hiya Hal,

Thanks for sharing some with me about ME/CFS. I know very little about it, so I am thankful to know a little bit more now, but I understand why it's a difficult topic for you.

Though I can often fool people into thinking I'm a normal/healthy person, as my migraines continue, I find it increasingly exhausting to do so. At this point, I've had multiple seasons of pain so severe that I want to kill myself. That sort of darkness leaves scars of shame and fear, and those scars often prevent me from connecting with people who I love and who love me, which leads to more shame and fear. It's such a vicious cycle. But I agree, I think people like us have a lot to give to the world simply by surviving and sharing our stories. That doesn't make it all worth it, but it does give us some small amount of purpose in our suffering.

It's funny you ask me about hope, because hope is something I rarely have in my day-to-day life. I'm a pragmatic person, and my disease has taught me to be rather pessimistic. But when I think about my main sources of hope, two things come to mind.

One is the hope of remission. Though Migraine is an incurable disease, I know of people who are chronic who have managed to improve their condition substantially. For someone like me, the chances of this happening are pretty slim, so this isn't a very strong or certain hope. What is perhaps more possible is learning to make peace with my pain, not letting it control my life so much. But I'd be lying if I told you I don't often dream of remission.

The second hope is a much stronger one, and I share it with you plainly because you asked me to write honestly: I pin all my hopes on the belief that there is a heaven. Having spent a good chunk of my life being sick, I need to know there’s a place other than this heating, warring planet full of grief and disease. I want to be made new and whole.

I'm really enjoying writing to you, Hal. I actually just passed up watching the Super Bowl with my husband and dogs to draft this letter, though that's not saying much as I am neither a huge football fan nor a huge Taylor Swift fan (I DO like Taylor Swift, just not as much as I like writing).

<3 Natalie

Hey,

I'm enjoying this as well. We should go for another round of letters after we put these into the world. I have a feeling there’s a lot more to say. By the way, I hear you’re from San Francisco! I’ve got a few friends out there that I’m dying to see. Maybe someday, we’ll get to meet in person. I hope so.

Sincerely, Hal

Thank you for reading, everybody. And don’t forget. Enjoy living in that body of yours. It won't be around forever. May as well take advantage of it while it’s here. Have a great week and see you next time. ❤️ Hal