One holiday season a few years ago, I was sprinting through the Atlanta airport desperately trying to make a flight home to San Diego. I ran right up to the gate and was one of the last passengers to board the plane. Winded, yes, but I didn’t feel anything that out of the ordinary.
I think airports are fascinating microcosms of our world. People from all walks of life coming and going for all kinds of reasons. The young business professional in a freshly pressed suit traveling to an annual conference in a second-tier destination city. The new parents attempting to get a stroller through security on their way to the grandparents’ house for baby’s first visit. And more recently, me, heading back home after spending a weekend in Dallas, celebrating a friend’s wedding.
There is something about traveling that really smacks the whole rare disease thing right in the face. This is particularly true for me with air travel, whether I’m heading out on a business trip or to a wedding. First is negotiating the arrival time. I like to be there early enough so that I feel settled before making the transition from land to air. I typically like to have 20 to 30 minutes prior to departure to let the anxiety dissipate before the boarding process begins.
The level of my pre-flight anxiety depends on whether or not I am checking a bag and how smoothly the security check goes. It goes without saying that I will have my oxygen concentrator with me (I really need to give him/her a name). The concentrator, cannula, and charging cord make up one carry-on bag. I usually have a laptop satchel, along with a roller case or garment bag and will need to check one. This means begrudgingly forking over $25 for the bag fee while doing my best to not consider it a chronic illness tax. Spending the money also means carrying less while walking to the gate and fending off the dizziness and shortness of breath that’s sure to be forthcoming.
Moving through the security line can feel like a breeze or the brisk interrogation of a bomb squad, depending on whether or not the TSA agents are familiar with oxygen concentrators. Sometimes, I get the full treatment like I’m trying to bring a questionable device on a plane, and other times, the concentrator makes it through with barely a batting eye. Now that I have successfully made it to the other side, the marathon can finally begin.
Airports are massive structural landscapes. Depending on how far away the gate is from security, the trek can feel like a brutal walk through a scorching desert, despite the air conditioning blaring full blast. Once, during a work trip post-diagnosis, I struggled to make a connecting flight in Charlotte, North Carolina, because the gate was on the opposite side of the airport. All of that exertion just to be denied a seat on the plane. The upside is that I now had extra time on my hands to observe the hustle and bustle around me and the chance to catch my breath.
Funnily enough, the flight itself is usually the most uneventful part of the entire flying experience. I typically don’t need to make use of the oxygen concentrator while in the air. Every 20 minutes or so I check my pulse oximeter to make sure my levels are fine and turn the page on the next chapter in the book I’m reading.
Still, PH makes my travel choices much more deliberate than in my pre-diagnosis days — including avoiding certain airports where the elevation might be a bit high for somebody with PH, even with that trusty oxygen concentrator.
Inevitably, this means that I can’t travel everywhere I want to go, and often that translates to missing a relative’s wedding or not visiting some family. This occurred in the fall of 2016 for my cousin’s wedding in Colorado. The altitude there is just too high and it would’ve been foolish to risk anything. This also means that my relatives were missing out on some of my signature dance moves.
I can’t stress enough how important it has been to have loving and supportive people in my life who encourage me every step of the way in my PHight with PH. Little did I know that I — or a version of my likeness — would make it to my cousin’s wedding. From the glow of a group text message with my siblings, I see they arrived in Denver safely with a cardboard cutout of man in a suit who drew a spitting image to me. I’m happy to report that he danced the night away, and thanks to my amazing and silly siblings, I was there in spirit.
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