By Being Your Own Advocate, Amazing Things Can Happen

When I first got sick, I didn’t know what it was. As I’d come to find out, neither did my doctors. 

Like so many things in life, my symptoms didn’t show themselves all at once. Instead, it was a gradual accumulation of ailments. I started feeling a bit more winded when I biked to work, but I didn’t think much of it — after all, I wasn’t getting any younger. Then my vision started feeling off, but the eye doctor I visited said everything looked just fine, so I let it slide. Then, suddenly, the dam broke and everything hit me like a crashing wave. I was tired, felt off-balance in a way that resembled constant vertigo, and the feeling that maybe this all was temporary suddenly evaporated. 

On that first bad day, I went to the emergency room, where I sat for 12 hours for a variety of tests, scans, and questions. Every test result was the same, as I was told nothing looked off and that I was free to go. 

After a night of fitful sleep, the next day didn’t do much to set me straight. I tried to press on with work like everything was fine, but it wasn’t easy. Then, early that afternoon, I got a call from the hospital telling me that, actually, a different doctor looked at my scans and they found something: two tumors, one on each side of my neck growing off of my carotid arteries. 

They didn’t think it was cancer, as my bloodwork had been fine, but they wanted to run a few more tests. In that moment, I’d have agreed to anything, so I signed up for MRIs, more bloodwork, meetings with specialists, more tests, more everything. 

I essentially looked at the hospital’s menu and said, “I’ll take one of each, please!” 

But what all that yielded was more questions than answers, and a “plan” to wait another year and see what happens. The doctors I met with kept punting me from one person to the next, each one effectively throwing their hands up and saying, “Not my job!” at each new appointment. For me, that just wasn’t good enough. So I did the only thing that made sense to me: I started writing. 

I’d spent most of my professional career as a writer — I know, you’re a few paragraphs into this and are currently questioning who would hire such a long-winded hack, but I promise I am quite charming in real life — and, a few weeks prior, I’d signed up for a newsletter service to take some of my work there. But my first post had nothing to do with what I normally wrote about, as the story became my experience with the health care system. 

After writing my first post in a flurry of anxious, frustrated energy, I briefly considered that maybe I was being too open or, perhaps, just too self-indulgent. People got sick all the time, and they took it in stride and never let on that something was amiss. I considered this for a moment and decided that, no, I’d always been a fairly transparent person, so why not lean into it and see what happens. 

I tossed a photo of me on top of the article, one from that first day in the emergency room, and clicked publish. I posted the link to social media and, immediately, the thing that I’d been so nervous about, so scared to face, became real. 

The response was immediate. Friends started texting me, people on social media responded with well wishes, and quickly my list of subscribers ballooned. Maybe there was something to this. Because, suddenly, I felt a whole lot less alone. 

I continued to chronicle every step of my journey, from frustrating results with the hospital I first visited, to long, rambling ruminations on death (having grown up in a funeral home certainly made this an easier topic for me to broach) and even peppered in some writing that I was known for, just to tap back into my normal life for a few stray moments. 

As I grew frustrated with the care I was receiving — or, more accurately, not receiving — out of nowhere I received a message from a former coworker altering me to the fact that another coworker of ours had a similar issue, and they encouraged me to reach out to them. I sent a text to this formerly ailing coworker and promptly received a phone call in return, where this acquaintance suddenly became a confidant; a lifeline. They’d gone through all of this just a few years prior, and our experiences were shockingly similar. They offered some advice, which was to reach out to Cleveland Clinic, and a specific doctor there. 

Though Cleveland was a solid six-hour drive, I did so immediately. A few weeks later, I was having the most anxiety-filled drive of my life, wondering if I was going all this way just to have the door shut in my face again. But I had to try. 

Waking up at 4 a.m. and driving in the dead of night to get to my early morning appointment, I had a lot of time to think. My mind went to what my life was like before all of this, and I felt a deep, radiating grief wash over me. It wasn’t the first time that had happened, nor would it be the last, but in that moment, the feeling was immense. I didn’t know it at the time, but I was mourning my old life; the one I built, the one I loved, the one I’d entirely taken for granted. By the time we got to Cleveland, I’d accepted that maybe this would be what my life was like from there on out. Because if no doctor took me seriously or wanted to help me, I’d have to make peace with my new life, whether I wanted to or not. 

My experience at Cleveland Clinic proved to be the polar opposite of the ones I’d had back home in Chicago. While they still acknowledged that my symptoms didn’t make perfect sense given my diagnosis of carotid body tumors, the fact I had bilateral tumors already put me in a pretty rare class of patients. They recommended surgery, but they also made it emphatically clear that it may not do anything to put me back on track. 

There was no guaranteed outcome but, once again, I just had to try. 

The week of Thanksgiving, I went in for surgery and, when I woke up, I had no idea if the symptoms were still there. I was groggy, sore, and had, essentially, a catheter in my neck that made sleeping less than pleasant, but I was alive. And I still had a bit of sass in me. When my family was brought to my room after surgery, I threw two middle fingers up toward the sky in defiance. The nurse told me I was being rude, but my family just laughed. I knew they would. 

Though recovery took longer than anticipated — thanks, in part, to a bruised nerve that sent searing pain from my chin to my ear at random intervals — after a few days I realized that I actually felt better. At least enough to know all of this was somehow worth it. 

I still have one tumor in my neck, but it’s a relatively small one, and its growth has largely been stunted, if not fully slowed. In many ways, despite everything I laid out here, I was lucky. By choosing to put aside the shame, the fear, and the guilt I initially felt about my diagnosis, I was able to find a community — and, more importantly, an answer to my questions.

All too often, we’re told to suffer in silence, either out of an internal sense of embarrassment, or through a society that has put a premium on projecting the very best versions of ourselves to the rest of the world at all times. I opted for neither, posting unflattering photos of myself, writing my most ugly, innermost thoughts, and even finding ways to insert some jokes in there. It was a serious matter, but I treated it like anything else I’d ever discussed in my writing career. 

Occasionally, I’ll have a day where I just feel off. I’m not sure what causes them, but they take me right back to the moment when all of this pain, fear, and despair was new. I try to sit in those moments and fully absorb them, to feel the appreciation that I’m on the other side of all this — at least for now. On any given day, something might send me right back to that place and, next time, I may not be able to get back out of it. 

Those moments are reminders that I didn’t fully appreciate my life before my illness — few people ever really do — but now, I appreciate every single second of the new one.