Tuesday, July 7, 2015

Dear 'Maggots'..

I read an interview once with Shawn "Clown" Crahan of Slipknot in passing. It popped up on my Facebook feed and I was intrigued by the promise of an explanation as to why he dubbed Slipknot fans "Maggots". In the very powerful and moving interview he gave, he said something that stuck with me.

"We’re not just a band, we’re a fucking culture–I know this. We have so many fans that I can’t even tell you because I would be incorrect. And we are one in the same, we are equal, we are together forever."

It's been a long time since my metalhead days—though I am definitely still a freak and anyone getting in the car with me knows they'd better bring some earplugs if they're not down with some heavy bass and metal voices—but the metal culture in general has always been a place where I felt at home, where I could connect. From something as simple as a nod to someone else wearing a band shirt to the absolute lifeline it provided me as a severely messed up teenager, there's an invisible string that connected me with every other lost soul on this planet who sought solace in the music. And so Clown's words certainly resonated with me—and more so now than ever.

About a year ago I had to start using a wheelchair on bad days or for anything requiring what my body feels is "excessive" walking, like going from my car into my classroom. My legs give out on me randomly, and I get dizzy/lightheaded, weak, and sometimes I fall. I have a feeding tube, but the feeds frequently make me sick and cause severe intestinal cramps--and even when they dont, my goal rate for my pump is a pipe dream, so I'm still not getting all the nutrition I need. I have a faulty autonomic system, which means my body has trouble regulating involuntary things like blood pressure, heart rate, and body temperature. I am nearly always nauseous and I am always in some level of pain. Some days I get by and some days I can't function.

My doctors believe that most of my medical problems (which include gastroparesis, dysautonomia, hyperthyroidism, eosinophilic gastroenteritis, and increasingly slow intestinal motility) are actually symptoms of a genetic mutation in the mitochondria of my DNA. Mitochondrial Disease is a misleading name, because there are thousands, if not more, of types of 'Mito', that can affect any part of the body that has mitochondria (everything except red blood cells) to any degree. Most forms of Mito can't even be tested for, and the genetic tests for the handful of types they can test for are frequently inconclusive or inaccurate and prohibitively expensive (the most basic blood test that my neurogeneticist ordered was nearly $20,000 and insurance usually won't pay for genetic testing, especially if you have Medicare/Medicaid.)

The mitochondria are like batteries for your body's cells. When there's a malfunction in the mitochondria, it's like having a dying battery in your flashlight. The light might come and go, or get progressively dimmer until the battery is completely drained. This is what happens to a human body with mitochondrial disease. And at this point, without the ability to do further testing, the belief is that this is what is happening to my body.

Because the past few months have been so crazy for me, I've been very bad at keeping up with all my loved ones on Facebook, especially since Facebook prefers to show me articles, pages, and picture shares over showing me the actual posts from said loved ones. The combination of this meant that I didn't remember (cognitive function is for squares) the conversation we had awhile back, that Stacy was planning to fundraise on my behalf (she asked if it would be okay)--so I didn't realize/remember it was going on, until she messaged me the other day about it. And when I saw how many people were involved, I was completely blown away to the point of being speechless--and anyone who knows me will tell you, it's very rare for me to not have something to say. ;)

when i said i wanted a new stomach
this isn't exactly what i had in mind.
Since then, I have gone back and read her posts on Facebook and Instagram, saw the article on Slipknotiowa.com, and cried several times. Aside of being so incredibly grateful to have a friend as amazing, smart, funny, supportive, and beautiful inside & out as Stacy (as I have been as long as we've known each other), I am blown away by her kindness, and by the amazing outpouring of support from the Slipknot community.

And this is why I am thinking back to that interview with Clown. Because I am looking at the <a href= GoFundMe page, and I am overwhelmed by the number of people who have been willing to help someone they don't even know—and even more than that, the encouragement and support in the comments. It's no secret that chronic and terminal illnesses carry depression with them--it's kind of inevitable. And when you find yourself filled up with sadness, a single kind word can mean an awful lot.

Outsiders look at the people lining a mosh pit or walking around with spiked jewelry and crazy hair, and they see something scary and ugly. But what I see is a community of people who have been freaks, outsiders, weirdos, and losers their entire life, who know what it's like to get kicked down and then stepped on. People who have refused to stay down, and have built their hearts up to resist whatever pain the outside world has to offer. I see a community of people who find solace and love and inner peace in the music, comfort in the culture, and the sense of belonging that a family gives you—and we are all a family. We are all connected by that invisible string, and when one person falls down, the rest of us feel the tug, and then we have a choice to either pull that person back up on their feet or cut the string and let them fall.

I am grateful beyond measure that you all have reached your hands out to try to help me stand up again. Thank you for not cutting the string and letting me fall. Thank you for letting me be part of the family.

\m/ Devious \m/

"And they are beautiful, and, without them, I am nothing."
– Shawn "Clown" Crahan, Slipknot

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