Since writing that piece last week, I’ve been asking myself why anyone has felt compelled to read this thing. Initially, I was going to use this space to write about music in a more casual manner, much like my good friend Dan Ozzi is doing over at REPLY ALT. But, obviously, my focus has shifted a bit. And now I don’t know what you all came here for. But I’ve got stories to tell, and I guess for now that’s good enough.
Unlike last week, where I went to the hospital every single day and spent countless hours on the phone scheduling appointments and untangling knots, this week I was just sitting around and waiting for a single visit with a neurosurgeon. It’s strange, because that initial burst of activity made me feel like I was somehow deeper into this process than I actually was. All of that was stressful in its own right, but having to sit around for a week and wonder what news was waiting for me proved to be equally taxing.
What’s even harder is learning that the way I live is basically incompatible with the symptoms I’m fighting every day. I’ve had to slow my pace dramatically, and also cut out activities that are regular parts of my life. I can’t ride my bike, I can’t play drums, and I can’t do much physical activity beyond walking or standing still. Cutting out those things means that I’m having more good days than bad ones, but I can’t say I’m enjoying what my life is looking like all that much.
It doesn’t help that every interaction I’ve had with a doctor so far has gone something like this:
DOCTOR: Wow. You’ve got tumors on your arteries. That’s not good.
ME: Yeah, not great. What can we do? When can we get them out?
DOCTOR: Easy now, killer. I said they were there, I never said I was going to do anything about it.
After waiting for nearly three hours to meet with a neurosurgeon yesterday, when he finally came into the room, he sat down, flipped through my file, and explained that he didn’t want to do anything about my tumors. Last week, his office told me that we’d be discussing treatments, be they surgery or radiation, and I spent the entire time leading up to the appointment thinking I’d walk away with a timeline. Instead, he told me my symptoms didn’t make any sense to him, that he’d be sending me for more tests, and capped the whole thing off by recommending me to yet another doctor. One who, conveniently, is already booked up for the rest of the year.
When I tried to tell him that I wasn’t satisfied with any of this, that my symptoms are making my daily life increasingly difficult and are actively derailing both my personal life and my ability to work, he responded with a shrug. That was it. Had he—or anyone else for that matter—explained why surgery was off the table, be it because it’s too risky or invasive, I’d have heard him out. But no one has done that yet. I’ve yet to get a single answer from anyone in charge of keeping me alive. Instead, I’ve gotten the sense they’d rather kick the ball far enough down the road that, if they’re lucky, they’ll never have to deal with it again. It’s truly thrilling to be told they found a problem and then have elected to let it linger, so I guess that just means more phone calls and appointments, in the hopes that someone will take me seriously.
(Fun little post-script, as my parents were driving me home from the hospital, we got into a car accident. Then some impatient idiot next to use got riled up and tried to fight me in the middle of the street. Truly a day for the ages.)
Despite the fact the neurologist I met with last week gave me a lot of bad information, they also said I could still go to shows if I felt up to it. Even if they were wrong about most everything they told me, that little nugget made me feel like it was still possible to have a bit of normalcy in my life. So with Iron Lung playing their first Chicago show in five years, it felt like a good time to see if I could actually handle being at a show.
Thankfully, I could. It was hot and sweaty, and things ran slower than I hoped, but getting to see Iron Lung play again made me feel normal for the first time in a week. Not only did the band sound great, it was inspiring to see Jensen playing drums again.
Last year, he had surgery on both his wrists, effectively making it so one of the most powerful drummers I’ve ever seen play was completely sidelined. Iron Lung played a few shows earlier this year, but it was with someone else behind the kit—B. from Jud Jud, no less—and Jensen only sang. So when he started talking about how being able to play again made him feel more like himself, my ears perked up. The sound was muffled, and plenty of people talked over it, but I was able to tune in just enough to get the message. He urged the crowd, or at least those paying attention, to find a thing they love and never let go of it, no matter what. And for once, I felt like I was finally getting some sound advice.