Lots of Words

In December 2012, New Times Broward-Palm Beach published an article I wrote about my situation vis-à-vis being a performer. Originally, the story was going to be a 4,000-word feature, but stuff happened and I ended up rewriting it entirely. Here’s the original version, in all its verbosity.

I was lying unconscious on a gurney, surrounded by an emergency room doctor and his team. On the other side of the room was a group of medical students observing the procedure, which was as grim as it gets: My heart had stopped, and the doctor was tasked with bringing me back. However, this wasn’t an ordinary hospital, and the doctor lacked conventional hospital equipment. In lieu of a defibrillator, he had a pair of jumper cables hooked up to a guitar amp.

“Clear!” the doctor shouted as he pressed he cables to my chest. It took four attempts, all evenly paced in four-four time. In fact, one of the doctor’s team members was playing the drums, and the other two were playing guitar and bass. The gurney? Well, it was a lifeguard rescue board.

All right, so it wasn’t a real doctor, but my friend, Brian, a.k.a. “Dr. Braincell.” His team members were my band mates in my former band, Billy Boloby, and this was how we launched into our set during a 2002 show at Dada in Delray Beach. Oh, and the “medical students” observing us were the audience members, who were probably wondering what the hell they were witnessing. And what they were witnessing was a typical Billy Boloby show — part rock ’n’ roll concert and part live comedy troupe.

The theme for this show was based on our CD, The Revival, the cover for which pictured me lying on the “gurney” while the other band members were dressed as doctors and appear to be either saving my life or torturing me. I never could quite tell.

We topped the Sun-Sentinel’s list of bands to watch in 2004, came in second in the New Times Broward-Palm Beach‘s top releases of 2003, headlined local music festivals, and were chosen to open for touring bands like the Black Lips and the Lyres. And most important, we managed to attract a fan base that wasn’t limited to a particular genre.

But unlike most of our gimmicks, which either were spoofs on current events or randomly plucked from the weirdest corners of our imagination, The Revival was actually inspired by real life. Though I knew I had lingering health issues that potentially could become serious, to me it still hadn’t become real. All that medical gobbledygook in the lab reports was just words on a page. Unfortunately, this gobbledygook didn’t like being ignored, and it was going to let me know. Almost overnight, I went from being at the top of my game to living in seclusion, afraid to venture outside and embarrassed of what I had become.

 • • •

Thursday, June 24, 1999, was quarter beer night at Respectable Street in West Palm Beach. Sadly enough, it was the highlight of the week for me. That year started off shitty and only got worse. In January, the band I had fronted for the past few years, the Mute-Ants, had broken up, and I couldn’t figure out what to do with myself. I had taken for granted how much my social life and overall identity had revolved around being in a band. Losing that was like being dumped by a girlfriend and laid off from a job at the same time. I was desperate and a bit lost. And there I sat, in the back patio of Respectable Street, drinking draft beer and plotting my next move.

“So are you starting a new band?” I heard one of my friends ask from the other side of the bench. I was too preoccupied to notice who it was.

“I’m not sure,” I replied. “Right now, I’m working on starting a webzine.”

Not surprisingly, that never happened. It had been so long since I was truly inspired and in a creative frame of mind. Most of my big ideas had come and gone years before, never realized, having fallen victim to compromise and cowardice.

The Mute-Ants was not the band it was meant to be. It was born out of the ashes of the Happy Accidents, a group I started my senior year of high school. My goal with the Happy Accidents was to screw with punk convention and let my inner weirdo run the show. But I was a little too weird for my own good, and a lot of it went over people’s heads (starting with my stage name: Lord Jason Jestful Accidental, Pope Budjinski Paul, the Mental). What I really wanted to do was ditch the guitar and be a full-time spaz. I had in my mind the image of a dynamic, stream-of-consciousness spouting character who was equal parts Iggy Pop and Pee-wee Herman. But I had no idea how to pull it off. Over time, we lost sight of our goal with the Happy Accidents and realized we were stuck playing music we didn’t like anymore.

The Mute-Ants was an attempt to fix that, and at first, it was great. But our drinking became too much of an influence. I had a lot of ideas for doing different things on stage, but I always chose to do the easy thing – put on the beer goggles and let the booze take over. Even my name was conventionally punk: Jason Mutation. My inner weirdo had drowned in a bottle of Olde English. Sitting there at Respectable Street, I kept thinking of how to resurrect that spirit, unaware that I was adding to its suppression with each sip of beer.

After that night, however, drinking would no longer be an issue – it would be a thing of the past. The next morning I got a phone call from my primary care doctor telling me my liver was in trouble. What started as a routine blood test became a three-month ordeal before a diagnosis was made. During that three months, I didn’t know if I had hepatitis or liver cancer or some other weird disease I’d never heard of. Finally, a gastroenterologist got to the “bottom of things” after performing a colonoscopy. Not surprisingly, it was Option C, a rare disease called primary sclerosing cholangitis (PSC), an autoimmune disease that causes inflammation and scarring of the bile ducts, which usually results in eventual liver failure. Of course, it didn’t end there. Where’s the fun in having only one disease? As part of a two-for-one deal, the PSC came with Crohn’s disease to ensure the full effect. Not that it was much consolation, but at least I knew none of this was my fault.

And then the coincidences started occurring. Not even a week later, People magazine ran an article on Robert Redford’s son, Jamie, who had received a liver transplant, all because of – you guessed it – PSC. Then about four weeks after that, football great Walter Payton died. The culprit? PSC. And because these things always come in three, several months later, Olympic snowboarder Chris Klug received a liver transplant, revealing that he had been suffering from PSC.

PSC. Those three simple letters. Before my diagnosis, I had never heard of PSC. And then, all of a sudden, it seemed like it was everywhere. Who’s next, the Pope?

As much of a shock as this was, health problems were nothing new to me. The first pre-existing condition I developed was seasonal allergies, and I started taking shots when I was 11. This eventually led to sinusitis, which required surgery in 2000 and again in 2001. In the mid-’90s, I started having anxiety attacks to the point where I couldn’t breathe; I’m mostly over it now, though it’s probably because I’m not performing anymore. Also, the mild case of insomnia I’ve had since I was a kid got worse over the years, to the point where numerous doctors completely gave up on me, though not before one hypothesized that it might be due to low iron. Sure enough, a blood test in 2008 revealed I had an iron deficiency and was anemic, which required a plasma infusion. This prevented the situation from getting worse, but it didn’t help my insomnia. I was averaging about an hour of sleep each night, sometimes less. That’s bad enough when it happens once or twice, but having to deal with this every day, week after week, month after month, I could have landed a job as an extra on The Walking Dead.

Though most of my ailments just sort of popped up, some were the result of my interminable clumsiness. To wit: In grade school, I broke the same finger three years in a row; I threw my arm out as a little league pitcher and have had recurring elbow pain ever since; I had Osgood-Schlatter disease during adolescence, resulting in one of my legs being immobilized for three weeks on three different occasions; I completely destroyed my collar bone in a traffic accident; and I lost count of the times I’ve either fractured or injured a rib, which still happens if I so much as lean over too quickly while sitting in a chair with a hard armrest.

But this PSC thing was a new beast entirely. It was by far the most serious problem, but it was the least obvious. I didn’t get it. I mean, I felt fine. How could any of this be true? Either someone was playing a prank on me, or these test results were bullshit. The only thing I knew for sure was that my life had just gotten a lot more complicated. I also knew I wasn’t going to sit back and let this thing ruin my life. So, just like with anything else, I devised a scheme. I would go ahead with whatever treatments my doctors recommended, but I wasn’t going to leave it at just that.

Because the nature of my condition is a haywire immune system – attacking my liver like it’s a foreign invader – I figured there probably was a larger imbalance at the root of it. And because I believed it was somehow tied to my subconscious mind, I was determined to reverse it myself, and I was going to do so through the power of music. Yeah, I was delusional, and I was well aware of that fact. But like Fox Mulder in The X-Files, I wanted to believe. I was going to play music either way – why not pretend I’m healing myself at the same time?

• • •

Back at Dada, I’m once again on the floor. It had been more than 10 minutes since my “revival,” and I was having another bout of spasms. My arms and legs were flailing in every direction, and I flopped around like someone at a faith healing. And that’s what it was, to an extent. I was channeling some deep mojo and trying to exorcise the illness from my body, as it were, and doing so through the one song I created for such a purpose – “Not Gonna See (That Doctor Again).” I wrote “Doctor” to have a danceable beat and plenty of crescendos so that I could use both my arms and legs to channel the energy, and try to shake loose all those bad signals in my brain that confuse essential organs for enemy invaders.

To the audience, it probably looked like … actually, I have no idea what my antics looked like to the random people having dinner at Dada. The one thing I was sure of was that I had come a long way since my Happy Accidents days. Back then I occasionally “experimented” with putting down my guitar and being an actual frontman. But that only worked with a few specific songs, and eventually they were dropped from our set. So when I finally decided to make Billy Boloby a four-piece, I knew there was no turning back and no half-assing it. This time, I had a greater purpose. I made myself believe it was a matter of life or death. So every time I performed, I paid equal attention to the crowd in front of me and my inner “audience” – the immune system I was desperately trying to impress. And though this band lasted only a few years, I had the same attitude in future bands.

For all the energy I put into trying to cure myself through music, it wasn’t the only form of alternative treatment I sought. Though I’ve never been into anything remotely “New Age,” I’m always open to trying anything that doesn’t cost much or come with risks. One of my bandmates gave me a book on Zen meditation that really opened my mind to a new way of understanding my body. But what really piqued my interest was when I learned that another bandmate was dating an energy healer, and she offered me her services for free. Like with the healing power of music, deep down I knew I was probably deluding myself. But it didn’t matter. Sometimes being rational is just no fun. Plus, it wasn’t like I had anything to lose. Heal away!

The energy healing sessions were great. I had no idea whether they were actually helping, but each time I walked away feeling refreshed and relaxed. Overall, I had four or five sessions, and by the end, I was actually looking forward to my next gastroenterologist appointment. Between my musical “exorcising,” Zen breathing practice, and the energy healing, I figured I would see some improvement in my next blood test. I mean, how could I not be healthier after all this?

I pondered this as I sat in the gastroenterologist’s office, waiting nervously for the results. As the door opened and the doctor walked in, my anxiety grew even more. Normally, this is where bedside manners come into play. But not with this guy. He entered the room reading a chart and shaking his head. “This does not look good. I don’t see a very long life here,” he said, sending a shot of terror down my spine; that was the scariest thing I’ve ever heard a doctor say.

Then he looked up at me. “Oh, this is another patient,” he said.

Bastard. He knew I would think it was my chart, but then I guess it was his plan to scare me.

“What about my results?” I asked.

“Oh, your liver enzymes have gone up,” he said. “I’d say, based on how things have been going, you will need a liver transplant in about five years – sometime by 2008.”

No f-ing way, I thought. I had no symptoms at all, I felt fine, and I was keeping care of myself. Five years? That’s bullshit. Who is this guy, anyway? He seems to get his kicks by scaring his patients. The doctor I saw at the University of Miami – a liver specialist – never made such dire predictions. In fact, he made me feel like I was doing OK and just needed to keep monitoring things. He never said I was fine, but he never used the t word.

But my gastroenterologist? After that visit, I would refer to him as “Dr. Doom and Gloom” (DDG for short). Not only was he about as comforting as a herniated disc, but his associates managed to do to my body what he did to my self-esteem. First, there was his nurse, who actually failed in her attempt to take a blood sample. She stuck me five times without hitting a vein, freaking out all the while and making such a commotion that ol’ Doomy had to take the needle from her and draw the blood himself.

Still, that was nothing compared to DDG’s surgeon buddy he referred me to after finding an enlarged lymph node in my neck. Let’s call him Dr. Bungle. At my consultation, I showed Dr. Bungle where the lymph node was, and he clearly felt it and acknowledged that it should be removed. The only problem was, when he cut open my neck, Dr. Bungle somehow couldn’t find the lymph node. Fortunately, he didn’t find any malignancies – which was the main concern here – but he stitched me back up with the swollen lymph node still in place. The next time I saw DDG, he asked about it, and I told him what happened. He snickered a little. I’m sure he thought it was pretty amusing.

After my appointment with DDG, I realized it was back to square one. Still, I didn’t care that my music had seemingly failed me. Always looking for a positive way to spin it, I decided that at least I was no longer under any pressure to heal myself. I had a new attitude: I may not have much time left, so I better stop the navel-gazing and start living it up. To make sure the point was drilled into my head, I wrote a song about it, titled “(Just a Little Bit of) Time.” It was a bittersweet song for me, and has nearly brought me to tears a few times as I thought of the meaning, but it really helped me keep perspective. Plus, its plaintive tone was easily countered by songs like “The PTA Took My Baby Away” and “Now My Love (Is Just a Corpse).” And, of course, “Doctor,” which was about the Doom-meister himself.

• • •

Over the years, I often wondered which would strike first, Crohn’s or PSC. Well, in 2008 I got my answer. It was June, and I was practicing with Pots ’N’ Pans, my most recent band before everything started going south. About five minutes into practice, I had to make a quick trip to the bathroom. Ten minutes later, I was back again. And then a third time. And then I went home, wondering what the hell was wrong. A week and a half and many bathroom visits later, I realized what was happening. It was Crohn’s disease finally making a formal introduction.

Fortunately, Pots ’N’ Pans was on its last legs, and I was desperate to take a break from music. So when the band finally broke up, I was free to focus on dealing with my health problems. However, I can’t say I handled it that well. A December 2008 holiday party at the Fox & Hound in Fort Lauderdale ended up being my unofficial farewell bash. After that, I basically went into hiding. It wasn’t anything planned, but after flaking out on my friends week after week – because Crohn’s disease has a way of ruining plans – I got tired of trying. Plus, no longer being in a band, I had no obligations to be anywhere, and I lost my sense of purpose.

It was like 1999 again, only I had no desire to do anything creative. I just wanted to feel better, and I wanted to do so privately. On a few occasions, people would post on my Facebook page, asking me how I was doing. I tried to engage them in a conversation, but for whatever reason, they couldn’t make the effort to reciprocate. I realize it wasn’t a big deal, but it irritated me at the time. So in late 2010, I decided my presence on Facebook was pointless and deactivated my account.

Soon my Crohn’s would go from being an inconvenience to being a serious illness. The pain alternated between a sharp, stabbing feeling to being bloated to the point where it feels like I’m going to explode. I often felt like I was carrying a weight in my stomach, even when I hadn’t eaten anything all day. It was just the inflammation. At work, I was spending more and more time in the bathroom. But I was always having to make a mad dash and often ran into my co-workers on the way. Thankfully, I was able to alter my schedule so I could do most of my work at home. I can’t imagine how I would have survived in a tight work schedule. If there’s one thing I can’t complain about, it’s my job. I count my blessings every day I’m still employed there.

After my Crohn’s disease kicked in, I began noticing other problems, most notably (and irritatingly) a psoriasis-like skin condition that first appeared in 2011. I already had a mild case of eczema and vitiligo, so another skin problem was the last thing I wanted. The good thing is that it’s very treatable; I wish my Crohn’s was as easily dealt with. I tried various dietary “cures” over the years, and most of the time they just made things worse. So I ignored all the stuff I read on the Internet and started listening to my own body. It wasn’t easy, but slowly I was learning how to deal with my new reality.

 • • •

Damn it! I was running low on one of my medications and didn’t have any refills. It was October 2011, and it had been almost a year since I’d seen my new gastroenterologist. (I stopped seeing DDG in 2004.) I called to ask for a refill, but the doctor wanted me to come in to have some blood drawn. At first I was annoyed, but then I had a realization: This is a good thing. Only a year before this, I was in and out of various doctors’ offices on a near monthly basis. But here I was thinking of it as something mundane to avoid, like jury duty.

Could this mean … am I … yes, I think so – I’m in remission! I felt like celebrating, but how? Where? I hadn’t been anywhere in so long, I didn’t even know what was going on or who was still around. It was time to reactivate my Facebook account. But I didn’t want to just pop back in like nothing happened; people would have questions. So, I began preparing a “welcome back” message. While I was typing it up, the phone rang. It was the doctor with my results.

“Your liver enzyme levels are the highest they’ve ever been,” he said, before telling me exactly how high.

I nearly dropped the phone. I sat back down at my computer and looked at what I had written. I deleted it. I hadn’t been this scared since 1999, when I first learned that my liver was in trouble. After getting over my initial freak-out, I resorted back to my usual stoic attitude of wait and see.

Despite this “October surprise,” I still planned on rejoining the world of the living. But first, I had to get my head straight. Psychologically, I’ve been in some pretty dark places over the years, but this was a whole new level of distress. I kept thinking of the various ways, physically and financially, that I would be completely screwed. It was hard to gain perspective. The only way forward, I thought, was to focus on the present. And the best place to start was Facebook. It felt awkward at first, but soon I felt an overwhelming desire to communicate, to the point where I realized Facebook wasn’t enough. Years of inactivity gave way to a burst of creative energy, and I launched a website, boloby.wordpress.com, where I could post a collection of my writings, videos, and MP3s, as well as my newest projects, “The Boloby Manifesto” and “I, Boloby.”

Once the website was up, it was back to posting health updates on Facebook. From January through March 2012, I underwent a series of procedures to find what caused the sudden spike in my liver enzymes. After a few MRIs told me nothing useful, I underwent an ERCP, which allowed the doctor to look through a scope that went down my throat. This provided the money shots and told all I needed to know: My bile ducts were completely screwed, my liver was getting pounded, and the only solution at this point was a transplant.

As much as I didn’t want to believe it – or even hear it – I actually felt relieved that after all this time, there will be some finality, a possible light at the end of the tunnel. The next step was to get on the transplant list. This involved a series of tests and procedures that went on seemingly forever. It was all so immediate and haphazard, I didn’t really know how long it would take. Then I found something in my mailbox with a Miami postmark. “Congratulations! You have been placed on the liver transplant list on 4/3/12 at Jackson Memorial Hospital.”

Finally, I thought; that’s a load off my mind. But then my mind began to wander. I recalled being in the eighth grade and receiving my acceptance letter to the Palm Beach County School of the Arts. Or the time I heard the voicemail message from Mutant Pop Records owner Tim Chandler, who had received the Mute-Ants’ demo tape and said he wanted to put out our next record. I thought of those milestones of good news and then looked down at this letter and couldn’t help seeing the bigger picture – that my victories in life have been reduced to this. Diminished expectations and all that.

Then I slapped myself because Boloby doesn’t wallow in self-pity. There’s no time for navel gazing anyway. Now it’s time for planning and preparation, getting my ass ready, both physically and mentally. I’m not sure when Transplant Day will be, though when I saw my liver specialist in April, he estimated four months from then. Right now, I live alone. Thankfully, I have a very supportive mother who will be moving in soon to help out. My dad’s equally supportive, but I’ll let him keep his day job. Though they live out in Okeechobee (a good 90-minute drive from me), they’re both ready to come by any time I need them. I can’t imagine how much all of this would suck were it not for them.

But even with my mom helping out, T-Day is going to be chaotic. Once I get the phone call that a liver’s available, I’ll have only four hours to drop whatever I’m doing and get to the hospital. The drive alone is easily an hour and a half under normal circumstances, and who knows what time of day it will be. And here’s where my mom’s awesomeness comes into play: She did some research and found an ambulance service that can take me. Taking an ambulance wouldn’t have even crossed my mind. Though neither of us are exactly rolling in the disposable income, it’s worth the cost to keep from worrying about one more headache I don’t need. I should be focusing on transplantation, not transportation.

According to my liver doctor, given my overall condition, I’ve got about a 95 percent chance for a successful transplant. Though it will be a huge step forward, by no means will it be an end to my health problems. For one thing, I’ll be on a whole new regimen of medications to keep the new liver from being rejected, or to keep infections from occurring. Plus, I’ll still have Crohn’s disease – something that can end up requiring surgery in the future. And though I don’t like to think about it, I’ve learned that some PSC patients who’ve had transplants end up needing a second transplant because the disease returned. Yeah. Did I mention that this disease really sucks? Again, this is where peace of mind is so crucial. At this stage, there’s no point in thinking about people who have had a second transplant. I’d rather think of people like Chris Klug, who went on to compete in the Winter Olympics two years after his transplant and still competes to this day. That dude is like my divine savior.

Despite everything I’ve been through over the years, life after the surgery will be my biggest challenge. This is the real deal – the real-life “revival.” If all goes well and Jason Budjinski is revived, maybe Billy Boloby will be as well. Because after all is said and done, I’m hoping to have much more than “just a little bit of time” – and it’s time I don’t intend to waste.

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

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