On Transparency

Cackling, my classmates point at my face. “You look like a ghost!” one sneers. Confused, with no access to a mirror, I ignore their taunting and turn back to my work. When I feel the nausea creeping through me, I know something is wrong. Instinctively, I reach down to feel the tubing through the fabric of my shirt. Wet. Uh-oh.

Later, I would learn that I turned ghost-white when my intravenous Flolan wasn’t getting through my Broviac catheter to my heart. That afternoon, way back in second grade, a connection in my tubing had broken, and medication was leaking out of it.

The drug has a six-minute half-life, so I start to feel the effects of withdrawals quickly. My mom rushes to the school to replace the tubing, our house conveniently – and intentionally – located only a couple blocks away. We sit in an empty classroom until I start to feel better.

The event set off a lifelong tradition of transparency about my condition. My mom and I gave presentations about pulmonary hypertension to my class every year after. We explained how the disease affected me, and what they could do to help in the event of an emergency – namely, inform someone who could get ahold of my parents. In middle school, I began presenting to all six of my classes myself. The process was intimidating, but always warranted a positive response.

I’ve been trying unsuccessfully to think of a time when educating my peers paid off – when one of my classmates really helped me out. Perhaps they never did – I knew better than anyone what I needed and how to get it. But these presentations took a lot of stress off me. They transformed my illness from an invisible secret to a topic of discussion. My candor eliminated any imagined need to hide my pump. I took the questions all at once, and told my classmates to ask my mom if they had more.

November is PH Awareness month. Raising awareness is a form of survival for me. In college, I needed my roommates to know about PH. Of course, it was pretty conspicuous when I pulled out a tray of supplies and began using needles and syringes to prepare the medication for my pump. Between midnight trips to emergency rooms and frequent deliveries of oxygen tanks, my disease inevitably factored into my living situation. Now that I am immunosuppressed to protect my transplanted organs, it’s critical that my friends understand my susceptibility to infection so they won’t come over to my house when they’re sick, or take bites of my food.

When an inebriated young man with a charming European accent blocks my path at a party to ask me about my mask, I politely explain the reason. Honestly, I’m taken aback that he cares about my flimsy filter mask at a party where a space helmet and inflatable T-Rex costume are universally accepted. The young man insists, to his companions’ dismay, that he can’t understand what I’m saying. He starts repeating, “I can’t hear you. I just asked you your name.” Friends come to my rescue and echo my explanation. They encircle us, trying to protect me and keep me moving toward the rest of our group. Gratitude for my friends eclipses my annoyance with the man’s drunken behavior.

Involving my friends in my disease strengthens our bond. They’ve shown up for early morning fundraisers, and visited me in the hospital. Reactions to my medical emergencies have come along way from mocking my ghost-like appearance.