Born Into Healthcare

Published: Feb 18, 2021

A couple of years ago, I experienced severe headaches and nausea while on a cruise. Stuck in the middle of the ocean, I had an anxiety attack, believing that my shunt was failing and I was going to slowly lose control of my speech and cognition until I slipped into a coma (which can happen with untreated hydrocephalus). Logically, I knew this wasn’t true. I haven’t had a single shunt problem in nearly thirty years. The last time, I went to my neurologist, he explained that going the rest of your life without a shunt revision is the goal and there’s even a good chance that I may not actually need my shunt anymore.

A few days after the cruise, I met with my primary care provider to get checked out. After discussing my symptoms, I talked about the “irrational” fear and anxiety I had surrounding my shunt and how ridiculous I felt for being so afraid of something that has proven to be a non‐issue. I asked if there was a mental health professional available that I could talk to about my anxiety. My doctor listened to my concerns, gave me the name of someone I could reach out to, and then said something to me I’ll never forget: “Urban, everyone at some point in their lives feels uncertain about their health—a sudden pain, a change in appetite, dizziness, etc., and that makes them anxious. You, on the other hand, were born into healthcare. Uncertainty has been a constant part of your life since day one. Anxiety about your health is completely understandable. Especially with something as complicated as your shunt.”

Born into healthcare.

Up until that point, I’d never really considered myself to be involved in healthcare. The symptoms of my disabilities are stable, I’m not on any prescription medication, and I rarely visit the doctor. Not needing healthcare is practically my brand. Hell, this entire site is meant to be a series of middle fingers to all the caretaker‐centric, hospice care level, tragedy/inspiration porn the passes for disability advice these days. The last thing I wanted to do was consider myself someone who requires healthcare.

But that’s just not the case. I do require healthcare and the only reason I thought otherwise is because I thought about healthcare the same way a fish thinks about water: when something is always around you, you hardly notice it. And when you do notice it, that can be terrifying. And that's okay. Those feelings are valid and experiencing them doesn’t make my independence and success as someone with a disability any less meaningful.