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In Case I Go Missing
The hashtag is #MillionsMissing.
You know me. I don't go missing easily, but I can see how this illness makes it happen whether you want it to or not. There are a few things that I'd like to get off my chest in case I become one of the many. Please don't forget.
Let’s raise a million for the millions.
My plan for this post is to make it raw and unedited. There will be very little wordsmithing. I'll write it five or ten minutes at a time over the course of the next couple weeks. My intention is to face the perfectionist in me and make this an stress-free sharing that will not produce any further decline in my health. I'm thinking of this as me writing a letter to you. It starts like this, Dear Love, Dear Friend… Dear Mom.
I remember when I used to write letters as a young man. From college, I wrote long handwritten letters to my parents. From the tops of trees and mountain peaks, I wrote letters illustrated with colored pencils to my college friends. In Greyhound bus rides. I wrote brotherly letters to my sisters (Remember Greyhound bus rides? -- Believe it or not, they used to have a smoking section in the back of the bus. I can't imagine that today, but it's true. I took several cross country trips on Greyhound buses in the 80's. I remember stepping to the back for a smoke. There was such a strong sense of community back there. It was the kind of joyous comraderie that happens when people gather together to kill themselves slowly. We knew we were killing ourselves, but we were ok with it and we were loving each other’s company. But, I digress.) The point I was trying to make is that when I used to write letters, there was no editing. It was one shot -- from beginning to end -- stream of consciousness. That's what I'm aiming for here -- like I'm hand writing a personal letter to you.
Did you know that I used to be a smoker? I was the one or two, rarely three-a-day, roll-your-own variety of cigarette smoker. My preference was a special blend of Drum tobacco and the golden Three Castles tobacco. Then I'd roll it up in a very fine, glueless Club paper. Those cigarettes were intense. I can still recall the almost sickening high they gave me. I'd roll one after dinner or after a coffee and muffin at the diner. When I lived on the second floor of my parents house, I'd smoke out the window. I was so afraid of my parents finding out that I smoked. There were a lot of things that I hid from my parents back then, but I'm sure they knew anyway. I'm grateful that I'm no longer sneaking around and hiding parts of myself from people. These days, I'm an open book. I've got nothing to hide.
For a few moments this afternoon, I found myself whistling in the kitchen. After a full morning and early afternoon belly down in bed, there I was, standing at the counter top paring an apple. I thought, "What the hell are you doing, Hal!? You better do this fast and sit back down in that wheelchair. This is dangerous behavior!" Imagine that. Whistling and paring an apple is dangerous behavior. It's crazy. It's called myalgic ensephalo-fuckin’-myelitis.
My whole life these days is about preventing another crash. All I've got to do is get through today without a crash and my day will have been a success. Since the New Year, I've had several devastating crashes. Each one has brought me to a deeper level of illness. I live my life with a constant underlying fear of the next crash. Every time I get used to the new normal, ME/CFS throws another one at me. It seems I still haven't learned the rules. To be honest, I'm not even sure that there are rules.
For months now, I've been saying, "C'mon God. Ease up on me." I find a few moments of ease here and there, but for the most part, I'm still waiting.
I just dozed off for a few minutes as I was lying on my second bed and I had a dream. I dreamed that my two sisters and I were careening out of control down a steep and winding mountain road. Johanna was driving while KK was fiddling around with the controls on the steering wheel. While we were veering off toward the edges of the cliff, Johanna was fighting to get KK to stop. Then I woke up.
This dream feels a little bit like my life right now except for the fact that ME/CFS is driving the car. There is no steering wheel and I'm the only passenger. My sisters are watching from distant look out towers using text messages and phone calls to do whatever they can do to get the car under control.
It seems that in 1991, with the sudden onset of ME/CFS, God was giving me a clear message to slow down. I was unable to hear that message. In many ways, I did slow down. I was always looking for a place to lie down and I discovered the 10 minute naps that became a staple in my life. But underlying everything, there was a sense of urgency to get more done and to do all the things that came into my mind that needed to get done. In case you haven’t noticed, I’m a bit of a mad musician. I have lots of big ideas.
As a young man, I once visited a monastery. I remember the feeling of fear that I felt with the silence there and the slowness there. It was a beautiful setting, but it just seemed so scary and depressing to me. I was afraid to sit quietly with myself. I was afraid to go slow and afraid to be small. Today, this is my only choice… but not really.
I have an urge to be more honest in telling the stories of my life. The trouble is that I'm scared. I'm scared that you'll judge me. You see, for much of my life, I lived two lives -- the life that I showed everyone and the hidden life that I kept all to myself. The stories from the hidden life play such an important role in who I am today. I think it's important for me to tell them. And heck... what have I got to lose. I'm 57, mostly bed bound and living the cleanest, most honest life I've ever lived. My writing coach encourages me to write the stories for myself and then later determine whether or not to put them into the world. I think she's right.
It's January 26th today and it's my dad's birthday. He's no longer living but I think about him alot. I talk to him all the time. Sometimes he holds me while I cry.
Well anyway. I hope you're well. I hope this letter wasn’t too much of a downer for you. Just so you know, Hallie and I exchange voice memos every night that begin, “What I love about my life is…” It’s one of the highlights of my day. But I'd love to hear more about YOU. Feel free to drop me a letter anytime. I hope you'll give me all the juicy details. I’m hungry to connect. Or just leave a comment right here.
Thank you so much for being here. Thank you for reading. Thank you for listening. And as always, don't forget. Enjoy living in that body of yours. It’s not gonna be around forever.
Love, Hal
In Case I Go Missing