These nine musicians who were open enough to talk to Paste about their experiences with chronic illness prove that the musical life isn’t always as glamorous as it seems. Listen to their stories about the realities of playing music while struggling with chronic illnesses ranging from kidney failure to multiple sclerosis.
Selective Eating Disorder
Considering that you have never heard of that particular disease, let me go ahead and quickly bring you up to speed on what it is. It is #REAL. There are 1,400 of us in America that we know of, and the biggest brains at Duke University are currently turning the screws on why we behave the way we do. For reasons still unclear, we afflicted with Selective Eating Disorder are, as you may have guessed, extremely selective about the foods that we are willing to eat. Me, for example, I have eaten the same 15-20 foods for my entire life. When a food from outside that pool is put before me, a foreign food, and I am made to understand that I must put it inside me, I will have a panic attack, and you will not be a happy camper if you are trying to ennoble me to conquer this particular weakness (I’m sorry, Momma, but I’ve been starving again). I will escape, by any means necessary, and go back to eating my staples, if indeed, I must eat.
How long have you had Selective Eating Disorder?
I am underqualifed to tell you whether or not, for me, Selective Eating Disorder is the chicken or the egg. Is there any disease of the brain that is anything more than a symptom of the disease that is Chronic Breath-Drawing (formerly Patrick Stickles Disease)? Was it anything more than a “good enough” way for the youngest version of myself to respond to the Manic Depression I’ve been in denial of for perhaps just as long? Was even that said manic depression anything more than a side effect of me swallowing a bucket full of lead paint as a baby? Am I only terrified of food because I think that my parents hid drugs in it like they did when I couldn’t sit down in kindergarten? When did it start? Why?
Better question—why do I feel entitled to an answer? One is not forthcoming, so I might as well just say that it has plagued me for every waking hour of my life that I can recall. I have never had a relationship with food that the common person could recognize. Did the food come first, or the fight? I don’t know, man. I was just a little kid. I never asked for any of this.
How does it affect your professional life?
The biggest part of my professional life is traveling, and seeing to its attendant logistics. The touring musician, especially one who seeks to keep a reasonable overhead (we are rare), must have the capacity to live by their wits, using only that which they can carry, and those resources which are made available on any given day. I am also beholden to four other people who each have their own agendas in addition to our shared one, and who do not have eating disorders like mine. When we stop at a gas station, I can not request a trip to another gas station if this particular one does not stock one of the four things that gas stations sell which I can use to nourish my body without freaking out. Similarly, when there isn’t a restaurant or food store within walking distance of the venue we are to play, then I am simply not going to eat on a day such as this. That’s fine by me, because I have never eaten a meal that was not a disgusting chore.
But the fact is, you can’t be the greatest, most uplifted singer of the best punk band when you’re running around America and not sleeping and don’t eat for a week at a time. Regardless, this is the situation. I was born to be a rock ‘n’ roller, not to battle the logistics of traveling America carrying a stupid eating disorder, so I just ignore that part of my life. As a result, I have always been malnourished, and now I am more so than ever. Three years of not eating or sleeping with any sort of regularity has taken all of the meat off my bones. Pretty soon I’ll roll over and die from this and then you won’t hear me singing anymore, but whatever—it was either that or look myself in the face, and you know I wasn’t about to do that.
You should also consider how many of our rituals in life happen around the dinner table, how much respect is earned by the breaking of bread. Do you think a record company executive finds it charming when I can only drink water at the restaurant they brought me to, or maybe some bread? Maybe I should have demanded we go to a restaurant of my choosing, but they wouldn’t go for that either, would they? I want to be flexible, but now you see me acting weird and maybe you wonder what other weird choices I feel compelled to make. Maybe you don’t trust me with your money.
I’ll say this for my eating disorder, though. It did ennoble me to write the song, “My Eating Disorder,” which will serve as the centerpiece of our forthcoming third LP. Look for that next year from your friends at XL Recordings.
How does it impact your personal life?
My disease puts up a wall between me and anyone else alive, it sometimes seems. I can remember feeling very vulnerable one day, and someone that I loved very much, at the time, pointing out to me that, while she may not have been perfect, most girls would have walked out a long time previous and gone after someone who could, say, have a date at a nice restaurant without gagging and having a panic attack at the table, like one Valentine’s Day I can’t forget. That was a manipulative and abusive thing to say, but I couldn’t deny that it was 100-percent true, so how could I really even get mad? She did deserve a better date than that. She did.
Maybe that will never be me. Maybe my true love and I will never chase after the same strand of spaghetti to facilitate a first kiss. Maybe me and my record company bosses won’t celebrate our first gold record (yeah right—it’s a metaphor, fool) over lobsters (def. not #MEATISMURDER).
Another thing is that, every time I meet someone, whoever they are, if I wish to grow closer to them, then I know that I am working towards the moment when I have to explain my eating disorder to them. I know that the moment is approaching when they, like my new friend James did just yesterday, “You have quite the interesting diet, Mr. Stickles.” He didn’t mean anything by that, but I would have loved to watch the life run out of his face as my hands close around his throat in that moment, because god damn it, I know I have an interesting diet. I have never forgotten that point for an instant. You are observing it for the first time and you feel entitled to make some smart-ass comment.
This is it, right? The biggest effect in my personal life is that it hurts. It hurts every day. Every day, I see food and I know that I need it to live and I hate myself for my otherness, and I hate the world that ripped me out of my perfect spirit plane or whatever bullshit and I am disgusted with my body and how pokey and angle-y it is and I never even wanted to fucking be born anyway, and it isn’t even for any kind of real reason and I’m just fucking alive and it is what it is.
Outside of your professional and personal dealings with Selective Eating Disorder, what else would you like others to know about it?
Everyone tells me I’m special, but even I’d like to be normal sometimes.
I guess now is also a good time to point out the inter-connectedness of these various eating disorders. For example, Selective Eating Disorder is my disease, but the practicality of living with it has resulted in me having certain bulimic tendencies. How does that work? Well, you remember how I said my eating disorder makes eating, even eating my “favorite” foods, a waking nightmare? Well, that leads me to put off doing it for as long as I can. The fact is, though, my body knows it needs food, so when I do finally open up the gullet, usually well after midnight, my body says, “At last!” and next thing I know, I am at the tail-end of a full-blown binge, and physics being what they are, you can only binge for so long until you purge. I don’t set out intending to purge, but you stuff yourself at an inopportune time, and you either spill your guts in the morning or you let loose a bowel movement so loose and enormous that you know your body failed to get even the slightest nutrition from the whole stupid, disgusting process. Do that for a couple decades, then tell me how you feel.
Lastly, and most importantly though, as much as this eating disorder tortures me, I’d rather let it torture me for the rest of my life than eat meat which is fucking murder.