You said, "I will keep my focus 'til the end"

You said, "I will keep my focus 'til the end"

When I quietly started this newsletter a couple weeks ago, it was with the intention of writing about music in a way that I couldn’t on any of the sites I freelance for. It was about being unburdened by the process of pitching editors, or having a harsh word count reining me in. It was about regaining a bit of creative freedom, and getting to be a little more personal in what I put out into the world.

I called it Former Clarity because of the Against Me! album Searching For A Former Clarity, as it’s a title that’s always spoken to me. It’s an album that’s reminded me to not lose sight of the passion I have for both music and writing, even as I’ve become disillusioned with those particular industries. But now, as I write this just a couple weeks later, choosing Former Clarity as the name of this newsletter feels all the more appropriate.

This past Monday, I spent the entire day in the emergency room (that’s where that fun picture up top comes from). I’d been feeling a little off the last couple weeks, and after battling through blurry vision, constant feelings of dizziness, and the slow erosion of my cognitive abilities, I decided I should get myself checked out. After 10 hours in the ER, I was sent home, reassured that everything was fine.

The next day, I got a call telling me that things were actually not fine. They found masses—the words “growths” and “tumors” have also been used—on my carotid arteries. For those that don’t know, the carotid arteries bring blood from your lungs to your brain, running up your neck like nifty little blood highways (name of my alt-country band). If you put your fingers on your neck and take your pulse, that’s your carotid artery. And currently, I have masses on both my right and left ones.

Without thinking, I immediately scheduled follow-up appointments. All I knew was that these things had appeared and that I was feeling like shit, so I might as well get moving and get them the fuck out of there. I called family and friends to let them know, because, well, why hide it? I’m a fairly transparent person, and while I hate feeling like people are showing me sympathy for literally any reason, I also don’t like to hide things from people. It felt important to let people know that, hey, this is what’s happening with me.

The calls went fine, with people saying nice things and offering support in all manner of ways. But one wasn’t so easy. Calling my girlfriend Nina and explaining what was going on was one of the most difficult messages I’ve ever had to deliver. I kept it together, getting the information out and explaining that this is something that will be taken care of—a belief I hold in my heart of hearts. But when I hung up the phone, I cried for a full five minutes. Because you never know what it’s going to be that breaks your heart until it happens.

Why am I writing about all this? Well, having told some people about my situation, that begat telling more people, and then more people, and then somehow even more people. Not because I necessarily wanted to air my dirty laundry, but because it felt like a lie to respond to the question of “How are you doing?” with anything other than honesty. If we can’t have a real conversation about what’s going on then what exactly is the point of all this?

The rest of this week has been full of doctor’s appointments, tests, scans, MRIs, and misinformation. Perhaps my favorite call was from one surgeon saying that a doctor I talked to earlier that morning had, and I quote, “Gotten literally everything wrong.” Which was honestly quite comforting, given that the doctor’s advice was: “You can keep living like this for the next year, but just try not to move your neck too much.”

I’ve been advised by every doctor I’ve met to avoid Googling what I have, which I think is pretty good advice. If you’re on WebMD for longer than four minutes you will learn that the cough you’ve had for the past week is actually a sign that you’re actively rotting from the inside out. So, generally speaking, it’s best to let all that stuff slide and listen to the people who are accredited professionals. Anyway, according to Google, whatever I have is pretty rare, but not unheard of. Only about one out of every 100,000 people have it (I always knew I was special) so that’s something. I’m alive, even if I’m only feeling about 70% of normal, but for now, I’ll take it.

While I still intend for this blog to be about music and other things I enjoy writing about, I’ve decided that it’d be easier to post updates here instead of having to send the same text message 74 times a day. Because while I appreciate everyone’s concern, I’m also really fucking tired. Plus, I’d rather own my story instead of pitching it to someone and getting paid $150 and told to cut the part about how I have to collect my piss in a giant jug in my fridge.

With all that in mind, let’s go back to Searching For A Former Clarity, and, more specifically, the album’s title track. I’ve always loved this song, which I always read as a brutal depiction of a Freddie Mercury-like figure struggling through their last days, only to die on stage at the song’s end. It’s a beautiful portrait of someone committed to their work even through the most trying times, their search for meaning and purpose carrying them to their end. It’s harrowing, and if you’ve never heard it, I recommend you listen to it.

This past week, this song has played in my head on a loop, especially the first couple lines that Laura Jane Grace sings, “No, the doctors never told you that you were dying / They just collected their money and sent you on your way.” This entire week, no one has said the name of my condition to me. Not one single person. They’ve said the word “tumor” and then backpedaled to “mass” in an attempt to spare my feelings and keep me from being scared—a futile gesture, but I appreciate the intention—but they’ve also not shown much urgency in terms of getting these things out of me, or even displayed a rudimentary understanding of what the root cause is, or how I can combat the fact my motor functions are actively getting worse. But they’ve been sure to hand me a bill as soon as I walk in the door, and I guess it’s that kind of consistency that really makes you know you’re in good hands.