To Comfort the Afflicted and Afflict the Comfortable

My journey with chronic illness began before I was even old enough to drive. My first symptom, a stiffening of my left leg, first appeared on a tennis court when I was 15. I didn’t know it then, but I’d been taken for a ride that would come to define my entire life. It would be another eight years before doctors would unmask the driver as a genetically inherited form of Parkinson’s Disease.

I’ve grown so much in those eight years between initial onset and concrete diagnosis. I went from a boy who fantasized about the money and things I could acquire as an investment banker to a man searching for a cause and fearing he might never find it.

I first thought my life would lead me to medicine. I was still holding out hope that a doctor could still solve the mystery of my malfunctioning body and restore me to health, and who the hell wouldn’t want to do that for others after going through it personally? As I left for the University of Idaho in 2010 I fully expected I would graduate with a degree in chemistry before heading to medical school.

But as I got further and further into my first semester I realized that working in neurology wasn’t what I wanted. After realizing no doctor would ever make my problems disappear by muttering abracadabra under their breath before writing a prescription, I knew I couldn’t possibly look a patient like myself in the eye and tell them, “I’m sorry, I don’t know what’s wrong with you.”

I needed to switch gears, and because I’d been told I was a good writer and didn’t want to teach, I chose journalism even though I’d probably picked up a newspaper maybe twice of my own volition before. This was my freshmen year after all; expecting me to make a good decision in between bong rips and binge drinking would have likely been asking a bit much.

Strangely enough, the further I got into the journalism program the more I found I loved it. Turns out that my most ill-thought-out decision was one of the best I’ve ever made. The allure of the Fourth Estate fighting to preserve a free society is what appealed to me about journalism; American humorist Finley Peter Dunne once described the duty of a newspaper as being to comfort the afflicted and afflict the comfortable. I’d found my cause.

I should note that until my sophomore year at UI my disease hadn’t limited me too greatly off the tennis court. That slowly began to change as I began having panic attacks and unexplained back pain. I had no reason to suspect that these things were all tied to my leg locking up, but they were. Thankfully my teachers were usually happy to work with me when I fell behind each semester because without this accommodation I likely wouldn’t have been able to make it to graduation successfully.

By the time I began writing for the Argonaut about midway through my junior year things had gotten really bad. Though I’d gotten some control over my panic attacks I was almost always in horrible pain and walking was becoming increasingly difficult. As spring semester started and I moved out of my fraternity with one of my pledge brothers I was smoking a pack a day simply because it gave me something to do when I couldn’t get beyond the stoop.

If you’ve gone through a major loss you know how powerful a force denial can be. Though I walked more and more bent forward almost daily I honestly thought that I would be fine if I just took better care of myself. Denial allowed me to push through my coursework and maintain a 3.0 while writing more than 30 articles for the Argonaut and several for the student magazine, Blot.

At some point during the semester the neurologist I was seeing in Spokane prescribed levodopa which allowed me to get off the couch and walk across campus. Of course, not really being in my right mind I attributed my newfound mobility to the massage therapy I was receiving while simultaneously popping pills like they were breath mints. Becuase I was working so hard to insulate myself psychologically from what I could feel psychically, I scarcely noticed when my legs became severely dyskinetic. Looking back on it now I can hardly believe I was able to ignore my legs writhing off the pedals as I drove home to see my parents. My mom, however, was not blinded by denial; she noticed the dyskinesia immediately, and she was horrified.

But I still wasn’t ready to forsake the fantasy world I was living in. This resulted in a falling out with my doctor when my mom told the truth and I denied and downplayed the facts. Not long afterward I became too busy for massage therapy, and I stopped taking my levodopa. The problems began to return.

No one can hide from the truth forever, and my moment of clarity came just before finals week. All semester I had been looking forward to getting together with my coworkers at the Argonaut to drunkenly celebrate a job well done, and finally that weekend had arrived, Journ.

Our Friday awards cookout was being held a mere three blocks from my house and I almost couldn’t make it there on foot. I was so bent over that I wasn’t really walking but falling forward without falling down. The rose-colored glasses had finally been ripped away, and faced with my reality I fell into a deep depression. As the party began while I sat home alone Saturday night all I could think of was suicide.

And my story would have ended there if not for one of my friends drunkenly calling me from the party:

“Where are you man?”

“I’m at home.”

“You’re being a bitch man, come out and party with us!”

If there had been any fight left in me at this point I would have just told him to fuck off, but all I could muster was to weakly agree that I was in fact being a bitch, and to say I would be there in half an hour.

I wish I could remember why I decided to take a single levadopa before I left because the decision literally saved my life. I walked several miles that night with absolutely no pain.

That summer I traveled to the District of Columbia for an internship program, and though my mom had been speaking with the director with the expectation that I would be in a wheel chair and need assistance to be successful, the levodopa allowed me to get around unaided. I was actually walking with such vigor that my calves stung with a near-constant burning feeling the entire summer.

That isn’t to say things were perfect. My mood peaked with mania and cratered into depression depending on where I was at in my dosage. Not only that, but my panic attacks came roaring back. My worst attack of the summer is still vividly seared into my mind.

It was raining that evening as we boarded the bus for our tour of the National Mall. As I took my seat I was greeted by the voice of our driver and guide, an old Brooklynite who had a disregard for vocal volume, tone and timbre rivaling that of Gilbert Gottfried. As he drove us around town shouting about landmarks my anxiety began to spin up. It reached the breaking point when he punctuated a sentence with an especially loud and discordant “HELLO!”

As we drove past the headquarters of the International Monetary Fund my internal monologue began shrieking: fuckI’mgoingtodieifIdon’tgetoffthisbusrightnowrRIGHTNOW!

Most of the tour beyond that point became a blur as my mind, consumed by the most terrible fear, tried to unceremoniously claw it’s way out of my body. There was a brief repreive when we got out at the Capitol, allowing me to snap my best photo of the trip: a black and white of the Capitol with the moisture of the rain glistening on the dark concrete of a walkway. As I walked towards the bus my perception of space jolted at a 45 degree angle and cast me back into my terror.

After what seemed like an eternal hour the attack began to subside as I stared at these words etched into the stone of the Roosevelt Memorial:

“We have nothing to fear but fear itself.”

For the rest of the summer I would use these words as an anchor point as I wrestled with what at times felt like a fraying of my sanity.

When the summer was over I returned home for my senior year wearing the two-piece suits I’d been using as armor against my anxieties. Thankfully things remained fairly stable that year allowing me to work and play like never before.

But things began to unravel again as graduation loomed ever nearer. My car was destroyed in a freak accident. I didn’t get a job I felt overqualified for. My vision of a future in Moscow with the woman I loved at the time disappeared. I was cast once again into an ocean of fear.

Then I got a call from the editor of the Twin Falls Times-News. She offered me an internship designing pages which I accepted with the caveat that I needed some time to find a car. And like that I had a plan again, although I was still drowning in fear; I found myself whimpering into my mother’s shoulder during the car ride home from lunch following my graduation.

I spent a few weeks at home before I went down to Twin Falls. My grandma sold me her Toyota Avalon, which I packed to the gills before heading to Moscow to see my girlfriend for what I thought might be the last time. The next day I headed for Twin Falls, finally arriving after driving all day.

When I first drove over the Perrine Bridge as the sun set over Centennial Waterfront Park I imagined that I’d entered some celestial oasis in the desert of southern Idaho. I was excited to begin my adult life in full.

For those who haven’t spent any time in them, newsrooms are one of the magical few workplaces where the ever present clacking of keyboards is occasionally punctuated with a loud “Fuck,” or any number of other choice words. In short, I felt quite at home.

If things had stayed that way I may very well have tamed my anxiety again, but I began to feel new limitations in my body. I was needing more and more pills to get through the day, and when I was off, whether it was due to a poorly timed pill or overindulgence at the local taco truck, my hands, and especially my left hand, simply wouldn’t function. Thankfully I had a good team with me on the copy desk that would help me carry pages if I needed them to.

But even though I was fighting near-constant fear, I hid it well enough that I was I was offered a job as a reporter out at the Burley bureau when it opened. Not long afterwards my girlfriend moved down from Moscow and in with me.

Things were looking good when I filed my first story for the Times-News in September of 2014. I loved the job; I got to take photos from most of my own stories and I was meeting new people and learning new things every day. Against all odds I’d landed in a job that I felt would perfectly prepare me for a long and successful career in journalism.

But as has happened so many times in my life, when things felt like they couldn’t get any better they suddenly fell apart. My girlfriend fell inexplicably ill, eventually returning to live at home in Seattle, and suddenly I living out in Burley completely alone. I confided in my coworkers at the bureau, and even a few sources, as my symptoms began spiraling more and more out of control.

Even as Parkinson’s began looking more and more likely I was still expecting that I’d be working at the Times-News for a year or more before moving to the next step in my career. Even though I frequently laid in bed depressed and worn out after a day of work I felt I had a purpose.

Then on February 25, 2015 during the first meeting of the local police force’s Citizens Academy, which I planned on covering as an ongoing blog, I fell ill suddenly. After vomiting in the bathroom and having to excuse myself early I began the 10 minute drive back to my apartment; I had to stop several times on the side of the road to vomit.

I hadn’t been sick since it started levodopa so I wasn’t prepared for what was about to happen. My symptoms flared dramatically, and because I’d vomited up my pills before they could actually be digested, I found myself in my apartment rapidly losing my ability to move as I became increasingly dehydrated and weak from illness. Thankfully, I got a hold of my fellow reporter before my cell phone died and she took me to the Emergency Room.

I was in pretty bad shape when I walked into the hospital, but I was cracking jokes and trying to remain upbeat. That changed when I realized none of the nurses seemed to believe me when I told them I was likely soon to be diagnosed with Parkinson’s and that the majority of my problems were from not having medication in my system. Over the next few hours my fellow reporter, a tough-as-nails bulldog of a journalist who was everything I aspired to be, had a front row seat to my precipitous decline as the nurses refused to give me my medication for hours. One nurse who responded to my incessant pressing of the call button told me there was nothing stopping me from walking around to ease my discomfort –never mind that I was curled into a ball from the pain.

By the time they discharged me I was in so much pain I begged them not to take my blood pressure. Later that night when I began to throw up again I resolved to quietly die in my apartment rather than return to the hospital. I called the suicide hotline to talk to someone, and eventually I called my parents and told them to come take me home. The next few days were a blur as as my parents packed up my apartment and I called to quit my job.

It’s been almost 7 months now since I came home, and I’ve seen a marked decline in my physical ability. I went from being able to work, with some difficulty, with a local photographer taking real estate photos to feeling unable to work at all due to the unpredictable nature of my on’s and off’s. I felt listless, without purpose and alone. Going to the local support group didn’t help at all because I was the youngest by at least 50 years, and I was also the one struggling the most with medication. Suicide began to enter my thoughts more and more.

But just as my life has a habit of falling apart when things seem to be going so well, it also has a way of throwing me a lifeline when things appear to be at their bleakest. This time that lifeline was a woman named Jasmine who I began speaking with on Facebook while she recuperated in the hospital from brain surgery to treat her Parkinson’s. Even though Jasmine is my junior by almost 2 1/2 years she quickly became something of a spirit guide leading me through how I related to my disease. I got to see the dramatic results surgery gave her, and she put together a group of young patients on Facebook that showed me I wasn’t so alone after all. Suddenly my life’s ride with Parkinson’s disease was like being on a bus full of people just like myself. I also began to see that though the bus will inevitably take us to the same destination, we do have some control over where we stop along the way.

Since I’ve come home I’ve been searching for a new purpose and I feel like I’m finally finding it. Helping people with Juvenile Onset Parkinson’s disease, people like myself, isn’t something I ever would’ve expected I’d be doing, and it definitely wasn’t a path I would have chosen, but now that I’m here I feel blessed to have the opportunity. I feel that I’m truly working to comfort the afflicted, and if need be to afflict the comforted, in order to better my community of fellow patients cursed with the scourge of Parkinson’s.

I know I will never work as a journalist again, but I want to use the skills I learned to shine light on the most important story I’ll ever be given: my own. So as I move closer and closer to Deep Brain Stimulation, a surgery that could change my life dramatically for the better, I want to offer you a ticket to share this ride with me. Unlike my fellow Parkinson’s patients and I, you’re free to get on and off whenever you’d like, but while you ride with us we have a lot to talk about.

After all what’s a road trip without good conversation?