Billy Boloby Versus Crohn's: A Musician's Struggle With Chronic Illness
I really hate battles of the bands. I mean, besides the fact that my bands never won, it's just a reminder that we're all doing this shit for selfish reasons, despite what anyone says. Yet for some reason I always ended up competing. I just wish my final performance wasn't another losing battle. Then again, it's an apt metaphor, considering it was my battle with disease that sidelined me in the first place.
On August 29, 2008, my band Pots 'N' Pans competed in a battle at the North Miami Museum of Contemporary Art. We didn't win, nor did we deserve to after my mediocre performance. For anyone not familiar, I was the frontman for several bands throughout the years: the Happy Accidents and Mute-Ants in the '90s, and Billy Boloby, the Bittercups, and Pots 'N' Pans in the '00s. My shtick was being very physical, like Olivia Newton John (well, maybe not, though I did wear leotards for a couple of Mute-Ants shows, unfortunately). But at the MOCA battle, I wasn't at 100 percent physically, or even psychologically.
Two weeks earlier, something happened that I'd been dreading for years: I had my first Crohn's disease flare-up. I was diagnosed in 1999, following months of tests and procedures, after learning that my liver enzymes were sky high. It was discovered that I have a disease called primary sclerosing cholangitis (PSC). I was told that it would eventually cause my liver to fail, and I'd need a transplant. At the time, I couldn't believe any of this. I mean, I felt fine. I never got sick, even when everyone around me was. And as far as Crohn's, I didn't have any symptoms, and it remained that way until that fateful August four years ago.
You've seen the KnowCrohns.com commercial, the one about how we're always looking for the bathroom? That pretty much nails it. After my first flare-up, which lasted more than a week, the thought of traveling from West Palm to Miami, performing, and then traveling back, had my nerves rattled. I was afraid to eat because I didn't know if it would cause me pain or go right through me, or both. My self-confidence took a nose-dive. Onstage, I was nervous, but it wasn't stage fright. All I could think of was how much longer I'd have to be there, wanting to get it over with so I could get home. Safe. Well, I managed to get through the show without any problems, but that was a problem itself — I didn't really enjoy any of it.
Performing was my favorite thing in the world. It was like a religious ritual for me. The stage is the one place where I feel totally alive, like I can do anything at all and am not restricted by social norms. It's the one place where I'm allowed — nay, expected — to be a weirdo. Over the years, my bands have done some wacky stuff onstage, and it was mostly the band that bore my name. We've been kidnapped by a mad scientist and replaced with his robot. Opening for the SuicideGirls burlesque show, we became an end-times cult that solicited audience members' money and offered Kool-Aid before offing ourselves. We changed our name to Vanilla Friendship Bracelet, donned black metal garb, made some noise, and got into a sword fight. We changed our identities so much it confused even us; at one show, we wore masks of each other and switched instruments. We did lots of parodies as well: Billi Vanilli, Billy and the Cruisers, the Out-of-Style Council, and our first stage production, The Billy Boloby Christmas Carol.
Pots 'N' Pans carried on that tradition when we could, though I was more focused on songwriting. So when I started flaring, I wasn't too worried. We had recently begun recording a full-length album and had a rough mix of the tracks. I thought it sounded awesome — possibly the best recording of any of my bands. This was going to put us on the map. It had to. After 15 years of toiling on the fringes of the punk and garage scenes, I was ready to get some recognition for my studio work. I designed a few composite album covers and started putting together some liner notes. I wanted this to be huge, my greatest achievement to date. And then we broke up.
Always the optimist, I looked on the "bright side" — I didn't have to worry about Crohn's screwing up my performance schedule. But then I thought about all the traveling I did over the years and how much I took it for granted. I looked back on the Mute-Ants' two-month-long tours. All of a sudden, all of that seemed impossible. How did I ever travel the country in a van, eating food from diners and convenience stores without a care in the world? Simple answer: I didn't. The guy who did all of that stuff doesn't exist anymore.
And that was just as true for everyone else.
When 2009 rolled around, Billy Boloby was nowhere to be found. After canceling plans week after week, I got fed up with feeling like a flake. I decided it'd be easier to just stop making plans. So I did. My guitar collected dust, and my social life was a memory. And after a while, I didn't care. At first, it was psychologically devastating, to go from being healthy and active to sick and house-ridden seemingly overnight. It really felt like a piece of me had died.
But I wasn't dead, and though it took me awhile, gradually I learned how to cope with having Crohn's. And by late 2011, after having no flare-ups for almost a year, I decided I was in remission. It took me awhile to realize it, but when I did, it hit me like a revelation, and I was ready to celebrate by finally emerging from my hermitage. I wanted to tell everyone, so I got on my computer to type up a Facebook post.
And then the phone rang. It was my gastroenterologist, calling with results from my latest blood test: My liver enzymes were skyrocketing. So much for celebrating. Instead, I spent the next several months undergoing a series of tests and procedures, and I was put on the liver transplant list this past April.
It took awhile, but eventually I stopped freaking out about my situation. I finally ended my streak of seclusion by attending a party in Lake Worth. And soon after that, my former bandmate Steve McKean hosted a "welcome back" party for me — and the Boloby band shook off our stage rust and performed an impromptu set, as did Pots 'N' Pans. The 20 minutes or so I spent playing music that night was without a doubt the best I've felt since this whole thing began. It felt right, like this is what I am supposed to do. I would very much like to do it again, despite this transplant looming over my head like a bile-filled rain cloud.
My liver specialist told me that after my transplant, I'll feel a lot better and will have a lot more energy. Perhaps 2013 will see my return to the stage. In the meantime, I created a website, Boloby.Wordpress.com, where I have posted most of my music, writings, and random oddities such as a Weekly World News article about the Boloby band having met at a camp for deformed children. Onstage or off, I have to stay creative. Crohn's and PSC can kick my ass all they want, but as long as I have my creative health, I'm good.
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