On Disordered Living

I didn’t set out to write a punch-in-the-heart post, but this may or may not contain one, so if you’re not feeling up to that kind of emotional voltage, please set this read aside for another time.


I promised myself that I would try to go out and see friends once a week. It doesn’t come as naturally as it used to. I used to live in a smallish city, and at night, you could go sit on top of a bridge and howl and five other nocturnal weirdos from your friend group would come racing down the street to see what you were up to. Now I can’t even climb the bridge. But I have been through a lot of changes lately, and in light of the others, I tried to make one more. On karaoke night, we go out. We have two (2) drinks. We have fun.

Tonight I went out. I had two (2) drinks. I sang three (3) songs. I talked to some of my oldest friends and brushed off men I didn’t know who tried to talk to me, in some cases, being, I admit, a bit eccentric (“What do they call you?” “Oh, all kinds of things!”) and causing one of my oldest friends to positively lose it. I sang “Punk Rock Girl” and made strangers shout “Anarchy!” which brought me joy. I did talk to one man I didn’t know, but he was in no way hitting on me, he just wanted to talk about Black Flag and the Dead Kennedys, so I was there for it. I sang “Beer” and people sang along. I tried to dance, but its hard to skank with a cane and I can’t pogo without falling down, so it was a lot of hair whipping. My hair, though short, is fluffy and good for this. I drank a lot of water, closed out the bar sober, and drove home.

At first, there was a definite charge coming off of my extrovert battery. I sang loudly and badly and shouted “Sorry not sorry, ya poor fuckin’ FBI agent!” at my phone. I put on an older AFI album, a favorite, a trusty old friend with a crooked smile and all-black tattoos. I was working on a line in my head (“Oh, babe, I don’t know, every time I put on mascara the night ends in tears”) which doesn’t belong in any of my books and may become a painting.

This is where it went sideways.

The lyric is “Oh please believe/ I’m doing just fine.”

My voice cracked.

The song is not sad.

And I thought, Uh-oh. A Feeling is trying to get out.

Let’s back up a little bit.


A lifetime ago, I took a misfit turn. Every teenager feels poorly understood, but some of us go all the way out. Too many black tee shirts. Wild hair colors. Letting casual conversations turn to pain or mortality. I didn’t have any coherent reason for this at the time. I didn’t know that things were harder for me than other people. I didn’t know other people didn’t hurt all the time, didn’t feel sick when they ate, didn’t have trouble sleeping. I knew they had healthier skin and teeth. I knew I didn’t look right. But I didn’t know any other way to physically feel, so I thought I was the only one struggling under normal circumstances. The results were, if anyone had understood the conditions, predictable. Kurt Cobain said it most succinctly; I hate myself and I want to die.

I made it to college, where I caught every cold and flu that came within ten yards of me. I worked. It hurt. I tried to take my weirdness and make dark art out of it. The pain persisted. So did I. Until I was about 27.

That year, the barely-stable body I had been working with went downhill fast. I lost weight I couldn’t afford to lose. The pain got worse. My hair started falling out. I couldn’t lift things. I had no idea why this was happening, but the mixed blessing of it was, I could finally look at my physical condition and definitively declare: not normal.

Getting properly diagnosed took years. One doctor used the phrase “an interesting constellation of symptoms.” Another told me it was all just stress. I had to move to New York City and see some of the purportedly best doctors in the world, and even then, I had to push: Something is wrong, something is wrong, something is wrong. Bouncing from specialist to specialist took all my time and energy. I was 103 lbs and nearly dead by the time I was taken seriously. A geneticist diagnosed me with EDS, the incurable explanation for so much of my suffering. I threw a party.

More than a year ago, I moved to Vermont to start my life over and applied for Social Security Disability Income (SSDI). Rejected. Appealed. Rejected. Went before a judge, the first person in the entire process to physically see me. Granted.

The entire year that went on, I had been working weekends in a bookstore, which I loved dearly, but it was costing me to do, and to be perfectly honest, I wasn’t very good at it. I knew a lot about books, but I failed in the little things. Remembering names though the fog of pain and meds. Dropping quarters when trying to make change. The boss-ladies were accommodating, but my body was not. I recently experienced a collision of unusual flares and asked for a sabbatical. If my health doesn’t improve in the next month, I most likely won’t be able to return to work.

And recently, I’ve been dealing with more heart trouble than usual. I take medication for arrhythmia and palpitations. I take extra water and salt for my extreme low blood pressure. But feeling your heart hitch brings mortality to the forefront. And when it happens driving home from a great night out with your friends, it makes you think things like I would be sorry to leave these people, but I would not be sorry to go.


I would be sorry to leave these people, but I would not be sorry to go. I’ve been in variable pain my entire life. I know now that it isn’t normal. As far as I’m concerned, if my heart stops sputtering tomorrow, I had a good run. That’s all we can ask for.

But I intend to keep going until one of my vital processes gives up the ghost, and this leads me to the problem of disordered living.

In disordered eating, a person’s relationship with food becomes anxious and sometimes adversarial. For many, the result is bingeing, purging, and/or avoidance. And it has recently occurred to me that I have this same relationship with…everything. When I feel momentarily up for it, I will overdo everything I used to do. My house will sprout sheet music and easels and concert tickets, acquired in a rush of THE LEGS ARE WORKING, LET’S GO. Then my fingers will fail to press strings, my body will fail to roll out of bed in the morning because I’ve pushed myself too hard, and all these things go to dust. Binge and purge. Disordered living. From grinning like a fool, playing Killer Queen on the ukulele, to waiting to die.

This is how it is.

The only ending to this wobbly arc is the one we all get.

And the good news is that, in those brief but glorious reprieves, I have the chance to live my life.

One thought on “On Disordered Living

  1. None of us are guaranteed anything beyond this minute. I think that getting as much joy as you can out of each day is a good thing. I don’t mean be reckless, but have fun when you’re able to. I live with chronic pain and others stuff too. It started in my late 20s, I’ll be 52 tomorrow and in July I’ll be rockin out at the Fall Out Boy/Weezer/Green Day concert!

    My (unsolicited) advice to everyone is live now! Don’t waste today planning for ‘someday’.


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