Forming

(Note: This is another piece I wrote before my colectomy. It’s long, but that’s because it’s a comprehensive look at the origins and purpose of the Boloby character.)

How I Became An Alter Egomaniac

By Jason Budjinski

Some people cope with chronic illness by relying on others, and I’m no exception. My “other” just happens to be an alter ego I created named Billy Boloby.

The denim-clad rocker types in the front pogoed up and down, drunkenly toasting champagne and splashing it all over the front of the stage. Some got on my white suede shoes, but I didn’t mind. The entire place was electric, and I was too busy feeding off that energy to worry about minor annoyances.

It was Dec. 31, 2003, and my band, Billy Boloby, was headlining the annual New Year’s Eve party at Palm Beach County’s premier alternative nightclub, Respectable Street. As the band’s frontman, I tried to make every performance as engaging as possible — a mix of dancing, pratfalls and general spontaneity.

That’s what Billy Boloby was known for, and Billy Boloby was what I was known for — and known as. People expected to see me fall off the stage and roll around. It was one of Boloby’s more salient characteristics, and something the local press always mentioned when writing about the band.

That was all many years ago.

When the phrase “fall precaution” was most recently written in reference to me, it wasn’t in a newspaper’s A&E section filed under “music.” Rather, it was on a hospital room dry-erase board, under “safety alerts/special needs.” And the name read “Jason Budjinski.” Because at that point, Billy Boloby was gone. Whether he was dead or on life support, I wasn’t sure. I just assumed the worst.

It was March 2013, and I was in the hospital for the second time that month. It’s worlds apart from the stage at Respectable Street, but it’s the only kind of gig I can get without Boloby. He was the attraction. He had a backing band and a local following. I have neither. Rather, my stage is a gurney and my audience is the hospital staff, and instead of careening around stage with a microphone stand, I’m waddling across the room holding an IV pole.

As I stumbled around, constantly getting tangled in IV tubes, all I could think of was how much better life was with Boloby around. He wasn’t just my stage persona; he was my way of coping with chronic illness.

• • •

What began with a routine physical exam snowballed into a never-ending series of tests, procedures and appointments. It started in 1999, when a blood test revealed my liver enzymes were higher than John Belushi on Mount Everest. I was referred to a gastroenterologist to figure out the cause. After three months of tests and procedures, I was diagnosed with primary sclerosing cholangitis, or PSC, an autoimmune disease of the bile ducts that eventually leads to liver failure.

I learned two things right away, courtesy of my (now former) gastroenterologist, who seemed to revel in delivering bad news (and whom I referred to as “Doctor Doom and Gloom”). First, there’s no real treatment, the only “cure” being a transplant, and second, people with PSC often have either ulcerative colitis or Crohn’s disease. I did some research on those diseases and couldn’t imagine that being the case for me. So, of course, it ended up being the case for me. The doctor discovered I had “subclinical Crohn’s disease,” meaning it was there, but I had no symptoms.

• • •

I was confused. It was just weeks away from my 23rd birthday, and I felt as healthy as ever. On paper, it was a different story. I knew it might not be long before things got hairy, so I vowed to not take any of my remaining time for granted. I knew that surviving this would require an inner strength beyond my normal capabilities. And as a musician, I saw the answer existing onstage — in the form of an alter ego.

Though I had used stage names in previous bands, I’d never assumed a different persona entirely. I’d always wanted to but never had the motivation. Well, I got my motivation, and then some, and I couldn’t wait to get started.

When you’re onstage, you can do things you can’t normally do in “normal” life. It’s understood as artistic license. You set the tone for the room and create the situation; the possibilities are endless. This idea was the guiding principle for the band I would soon form. I already had a general concept for my desired stage persona — equal parts Iggy Pop, James Brown and Pee-wee Herman — I just needed a name. Having grown up watching Pee-wee’s Playhouse, I always loved the name of the ventriloquist dummy, Billy Baloney. So with a little phonetical engineering, Billy Boloby was born, sometime in early 2000.

Boloby didn’t come fully formed right out of the gate; he needed time to develop, finally taking his first onstage steps in May 2002. My first challenge was to convince people I’m really this other person — quite a tall order given his characteristics. Boloby is not burdened by indecision, not worried about doing or saying the wrong thing, or looking foolish. Because of that, he always happened to say and do the right thing. So I had to learn to turn off that part of my brain.

The bigger challenge was performing without a guitar. I never learned how to dance, and because I’m naturally uncoordinated (knock knees, big feet, tweaked ankles), I never was comfortable dancing in front of anyone, let alone an audience. Initially, I tried to work out the kinks and learn a conventional dance routine, but I quickly abandoned that idea. Rather than continue fighting my body’s lack of coordination, I used it to my advantage in developing Boloby’s slack style.

This is where Boloby acted as my “bad health buffer.” As he performed, I took a back seat and let him move with the music, allowing good energy to wash over my body while channeling out all the bad stuff. Yes, I know it sounds silly (and naïve, ridiculous and other such pejoratives), but my thought was this: Because of the autoimmune nature of PSC — in which the immune system attacks the bile ducts as if they were foreign invaders — I figured there had to be a way for my brain to set it straight. I mean, it was just a simple miscommunication, right?

That was my theory, at least, and I was counting on Boloby to be the intermediary between my brain and my bile ducts. Certain songs were written to facilitate this. Boloby’s performance involved a lot of flailing arms and legs, and a continuum of random loose yet jerky movements in accordance with the music. And, notably, occasional bouts of falling down and convulsing. So while everyone thought his antics were intended only for their entertainment, the truth is he was trying to exorcise my illness.

Offstage, the antics continued. Boloby and the other three members of his eponymous band — Gary Harris, Herman Von Uberstein and Marvin Holiday, all alter egos themselves — enjoyed blurring the line between performance and real life. For our first major stunt, we found the perfect outlet for our shenanigans — the infamous supermarket tabloid known as the Weekly World News. The Sept. 3, 2002, edition featured a two-page spread titled “‘Don’t Call Us Freaks!’ Say Deformed Rockers.” The story explained how we met at a summer camp for physically deformed youths, using our love of music to overcome adversity and pursue our dreams. I knew our mission succeeded when I received an email from a WWN reader who thought it was real.

Ultimately, though, our most memorable experiences were live. We tried to have a special theme or skit for each show, and though we couldn’t act, had limited resources and never rehearsed enough, we somehow managed to pull it off most of the time.

Whether it was foreshadowing or mere coincidence, Billy Boloby’s first and only CD, The Revival, was based on a skit we did that involved resuscitating a clinically dead Boloby, who was brought in on a stretcher after supposedly being hit by a car. Now Boloby needs to be resuscitated for real, and it’s up to me to bring him back. I owe him at least that much, considering all he’s done — and continues to do — for me.

• • •

Normally I eat dinner around 5:30 p.m. every day. It’s part of the routine I created to make my Crohn’s more predictable. But when 5:30 p.m. rolled around on April 5, 2013, I was on the couch, eyes glued to the television, waiting for the local CBS affiliate’s 5:30 news lead.

Just then, the title appeared on the screen: “Local Musician’s Battle.” And there’s me, sitting in my living room and playing guitar while the reporter narrates, explaining my situation and that “friends and family are coming together” to organize a benefit event to help ease my financial burden. A YouTube video of my band performing is shown, and a song from The Revival plays in the background.

Although I was introduced as Jason Budjinski (as per the rules of journalism), the story was about Billy Boloby — as were subsequent stories that appeared in the local daily and weekly papers to promote the benefit show. Boloby always had a knack for garnering press coverage, and apparently it’s still the case even though he can’t perform. The event succeeded beyond anyone’s expectations, especially mine. It was one of those moments where you take stock of everything in your life and realize how important friends are. And, in my case, how awesome they are. Still, I had to ask myself: Would it have been as successful without Boloby? Actually, I really didn’t have to ask; I already knew the answer.

• • •

Dissociative Identity Disorder (DID), previously referred to as multiple personality disorder (MPD), is a dissociative disorder involving a disturbance of identity in which two or more separate and distinct personality states (or identities) control the individual’s behavior at different times.

I found the above description on the National Alliance on Mental Illness website. It was one of the first pages I came across while researching alter egos and their use as a coping mechanism. I was trying to find either personal accounts from people who created their own “Bolobys” to deal with an ongoing problem, or articles by therapists, grief counselors, etc., explaining the usefulness of this technique. I found neither, just lots of stuff about mental illness.

I guess “normal” people don’t do this. Stage names are OK. Pen names, too. But to create a three-dimensional personality and assume that identity in everyday life? That’s grounds for being institutionalized, apparently.

The only other alternative, which I find hard to believe, is that I’m the first person to really do this. Based on what I’ve read, people with DID create other personalities to absorb their pain. That’s the opposite of my situation. I’m facing all the bad stuff as Jason Budjinski. Boloby was created as an attempt to prevent any of this in the first place, and for many years, it seemed like he might succeed.

• • •

Given the nature of Boloby’s stage behavior, he often caused me a bit of pain, usually after leaping off a stage. But he would always leave me feeling as if I’d been cleansed, like I had purged all the “bad juju” and was ready to start anew. Rationally, I knew this was a bit silly (and naïve, ridiculous, etc.), but like Fox Mulder, I really wanted to believe. And for a while, it appeared to be working, as I continued symptom-free for years. In 1999, Dr. Doom and Gloom said it would be about five years before my liver failed, but in 2004 I felt on top of the world.

And it was all thanks to Boloby. He created opportunities that never before existed, even helping me get a full-time job as an A&E writer and editor at the local alt-weekly, New Times Broward-Palm Beach. One week my band would have me headlining a music festival, and the next week my job would have me writing about one. However, it wasn’t easy toeing the line between musician and music journalist, and when I got promoted to music editor, I decided to put Boloby on the back burner.

It was bad enough having to interview and write about local bands I didn’t like, but dealing with the bands I did like and had become friends with ended up being more painful. Because inevitably, usually toward the end of the interview, the interviewer-interviewee roles would reverse.

“So what is Boloby up to these days? Are you still playing shows?”
“When will there be another Boloby show?”
“Man, I miss you guys. We should book a show sometime.”

Every time this happened, I could feel Boloby’s disapproval. It was like he was looking on from somewhere and giving me the evil eye. If he really was my version of Superman, as I always joked, I was starting to feel trapped as Clark Kent. So after eight months as music editor, I quit and immediately returned to music, fronting a band called Pots ’N’ Pans for the next year and a half. I was back to my old self … er, alter-ego.

When Pots ’N’ Pans broke up in August 2008, I saw it as an opportunity to do something new, something different. So I bought an acoustic-electric guitar and planned to start a one-man band. Rather than play a set of pre-written songs, I would have maybe two or three songs with the rest of the set being an improvised “musical conversation” with the audience.

But Billy Boloby 2.0 never happened. Instead, Crohn’s disease did. While my PSC hadn’t yet been triggered, my Crohn’s exploded with full force. And no matter how much I had tried to mentally prepare myself, the reality of it caught me off-guard.

It happened virtually overnight. I went from freely roaming South Florida, playing shows and hanging out all hours of the night, to huddled up in my room, afraid to venture too far from my bathroom. Suddenly, there were limits to what I could do, where I could go and when. It was difficult enough during the day, but nighttime was even worse. Week after week, I made plans only to cancel them at the last minute.

Regardless of the repercussions this had on my daily life, a greater truth became apparent: Billy Boloby was gone. My memory of him faded a little more with each passing day. People often joke about how watching a terrible movie is like losing two hours of their life that they’ll never get back. Well, I lost about two and a half years of my life to Crohn’s. Eventually all I did each day was work and watch Netflix, and try to avoid thinking about how far I had fallen. If I had anything going for me, it was being allowed to work from home to accommodate my condition.

• • •

Then a funny thing happened on my way to … OK, so I never left my house. The point is, out of the blue I had an epiphany of sorts. It was October 2011, and I broke from my pattern of self-deflection to assess how my year had been going. I realized that since the end of 2010, I had suffered only one or two brief flares, and it had been many months since the last one. Could it be … could I be … in remission? Why, yes, it appeared so! This was the most excited I’d been in years. Immediately, I thought of Boloby and the possibility of bringing him back.

And then the phone rang. It was one of my many doctors, informing me that my liver enzymes were higher than ever. So much for my celebration; it was over before it began, literally. It was back to being a lab rat. Perhaps the PSC had grown bored of riding shotgun while Crohn’s was at the wheel, because on April 3, 2012, I was placed on the liver transplant list at Jackson Memorial Hospital in Miami. Advantage, PSC.

Ah, but my Crohn’s doesn’t like being one-upped, and it struck again almost a year later, when a hospital doctor found pre-cancerous growths in my colon. It was like the two diseases were battling to see which could do me in first.

I’ve had a lot of setbacks over the years, but my stoicism never budged. Until now. While I’m used to life throwing me curveballs, this past year has been all beanballs, aimed straight at my head. I was really starting to crack, and after learning that my entire colon would be removed, a nervous breakdown seemed imminent.

Then the doctor said something I thought I’d never hear: Removing the diseased colon meant removing the disease itself. That means I’ll have no more PSC and no more Crohn’s. And what he said next changed everything: “You’ll be a new man — it’ll be a total revival.”

It was like someone told him to use that word (or perhaps he was a fan … OK, probably not). Either way, this was the first time since 2008 that I really saw the possibility of Boloby coming back. I mean, sure, I’ve talked about it several times over the past few years, but that was just me trying to sound optimistic for my friends. I never actually believed it.

Now I do. I just need to clear this final hurdle, the true size of which I won’t grasp until it’s right in front of me. While Boloby can’t do much to help me through the surgery, just knowing he’ll be there when it’s over is motivation enough. And after I give my final performance at Club Operating Room, maybe I can get back onto a real stage, where falling down and convulsing isn’t a precaution, but part of the show.
I just hope no one calls an ambulance.

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This entry was posted in Crohn's Disease, General Disease, Music, Primary Sclerosing Cholangitis. Bookmark the permalink.

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