Hi. I’m Hal. It’s Saturday and this is “Living in a Body.” Please click the play button to hear me narrate the story with original piano music. (9 minutes)
No Flex
Man, I wish I’d taken some more photos of my biceps before all this craziness started happening. I’ve always been a skinny guy, but I had some nice biceps. In fact, I had a special liking for my biceps. Every once in a while, I’d stand up in front of the mirror and I’d put my arm up to flex. I gotta admit it, I liked what I saw. I liked the shape of the muscles connecting my arms to my shoulders. I liked the curve on top and the way I could make it bigger by bringing my forearm down a little bit. In the dressing room at T.J. Maxx, I'd try on a short sleeved shirt that was just a little bit snug on me. With the sleeve tight up against my skin, I felt strong and sexy. I’d have the thought, “Damn, you look good!” Of course, I realize the mirrors and the lighting in those places are always deceptive and it never looks quite as good when you get home. But damn, I looked good.
I'd like to take this opportunity to introduce you to my friend JP Allen. In 1996, he was one of the best men at my wedding and in 2013, he literally saved my life. JP and I met briefly on the Frisbee field at Northwestern and it was there that we discovered our mutual love for all things harmonica. After graduation, JP called me up and asked if I wanted to travel with him to Elk River, Idaho to live up on a mountain in his uncle's A-frame -- no running water, no electricity, no cell phone, no credit card. Of course I said yes and a lifelong friendship began. In a couple weeks, I'm gonna tell you the story of how JP saved my life on the day before my birthday nine years ago. JP, I love you, man. Oh shit, I'm gonna cry now. (See ep. 5, I Love Crying)
JP launched the Idaho trip from his family's home in Great Neck, Long Island. He picked me up in Ohio and we continued westward. Legend has it that JP and I played train rhythms on our harmonicas the whole way to Idaho. We were a couple o’ long-haired, young, hot harmonica players driving across the country in a capped Mazda pickup truck in 1989. If only we knew how good we had it back then. JP was doing Dan Millman’s Peaceful Warrior exercises. I was on a spiritual quest. You can see in the photo below that I'm reading "The Joy of No Sex."
We arrived in Northern Idaho in the late Spring and there was still snow on the ground. We filled a non-working refrigerator with packed snow to keep our food cold for the month. It was six weeks of rustic living. We had to park the truck at the bottom of the mountain and we carried all our supplies up the hill on our backs and on our mountain bikes. I'm the kind of guy that preferred to carry everything in one trip, so that’s what I did. I'll let JP tell you the story:
“When Hal and I were in Elk River, Idaho, I'll never forget the time we were climbing up the mountain and he was carrying about three times the weight I was. His strength almost seemed godly to me. I consider myself a pretty strong skinny guy and Hal was a skinny guy who was about three times stronger. He hauled all of his luggage up in one go and then we went on to live in this cabin up in the mountains for a solid month. He carried all his accessories and necessities up in one go. It blew me away. “ - JP Allen, Austin, Texas
After 6 months of lying in bed and at times not having the strength to lift my own glass of water, I've lost a lot of muscle. I have no flex. My biceps are fading fast. In fact, there are times when it sickens me a little bit to flex, so I generally prefer not to try. I’ve got no biceps, no calf muscles and no thigh muscles to speak of. It's all turning soft. Recently, I've even lost a couple arm wrestling matches to people that, in the past, there's no way I would have let beat me. For a competitive guy like me, it’s very humbling.
Your tendency might be to ask, “Well Hal, have you tried exercise?” And then you might hear the collective groan of the worldwide community of ME/CFS sufferers. “No… obviously you have no idea.” You see, exercise is not really an option for me. The slightest exertion — walking up the stairs, lifting my arms, recording this podcast or standing up to pee — can be sickening or can cause the worsening of symptoms. It’s poorly named, “post-exertional malaise.” Malaise? C’mon now. Actually, I looked up the word “malaise” and it’s more appropriate than I had realized.
Malaise: noun ma·laise | /məˈlāz/ 1. :a general feeling of discomfort, illness, or uneasiness whose exact cause is difficult to identify.
There are no two ways about it. Myalgic encephalo-fuckin'-myelitis, also known as chronic (fuck you) fatigue syndrome is a mean son-of-a-bitch (see Flippant Hal) and it's taking my gorgeous biceps away like some cruel, savage invisible beast. My arms and legs lie there defenseless like soft jello weight.
I’ll end on a positive note though. I’m grateful that these days I have the strength to sit up and type. In fact, I've been taking an online typing course that I'm really enjoying. Today, I'm able to type full paragraphs without even looking at the keyboard. After all these years of hunting and pecking, it’s really quite fun. Actually, it’s a little bit like playing the piano.
I have friends living with this illness that aren't strong enough to sit up in bed. My friend James Strazza, who was recently featured in USA Today, can’t get out of bed to use the bathroom. He’s a great musician, but for the last two years, he’s been living in the dark with silencing headphones over his ears and an eye mask over his eyes. Dammit. Say a prayer for James today. Or better yet, make a donation to his GoFundMe.
So this is the takeaway. Go love your biceps today. Whatever biceps you got. I’ll do the same. Go look in the mirror and if you’re able, hold up you arm and flex and whether you believe it or not, say “Damn, you look good.” These bodies of ours won’t be around forever. We may as well love ‘em while we got ‘em. I love you. I appreciate you. You made it all the way to the bottom of this post and you’re still with me. I’m grateful. Now go have a great Saturday and I’ll see back here on Tuesday for “What’s Your Story.”
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No Flex