Navigating the Stairs and Stares of Life With PH
Have you ever seen the view from the top of the Lincoln Memorial in Washington, D.C.? Maybe you saw the monument during a family or school trip, or perhaps a visit to the National Mall is still on your bucket list? Living in D.C., I sometimes forget how close the Lincoln Memorial and other monuments are to my neighborhood, and I wonder why I don’t see them unless I’m playing tourist with friends or family.
I found myself gazing from atop the Lincoln Memorial a few weeks ago for a project related to my PH advocacy efforts. Scaling the stairs of the memorial felt surreal for two reasons. First, we’re still collectively living through the COVID-19 pandemic. I had spent so much of the last year and a half staying indoors and away from crowds that I experienced a bit of cognitive dissonance with my choice to visit such a high-traffic area during the summer months.
Second, I couldn’t remember if I had visited the Lincoln Memorial since my pulmonary hypertension diagnosis in 2016. I lived in an adjacent neighborhood a few years before my diagnosis, and I would run through the National Mall for exercise. Every now and then, I would find the pull of the monument’s stairs impossible to resist and I’d push myself to the top. I mean, everybody wants their Rocky Balboa moment, right?
Standing at the base of the monument with my oxygen concentrator and cannula on this year, I began thinking about the various stairs and stares I have encountered living with pulmonary hypertension, a chronic, rare disease affecting the heart and lungs. I regularly experience shortness of breath, among other symptoms. Flare-ups often happen after I’ve walked up a flight of stairs — with and without supplemental oxygen requiring me to stop and catch my breath.
One cruel irony is that I live at the top of a walk-up row house. Prior to the pandemic, when I worked in an office, I would go up and down three flights of stairs almost every day. Working remotely has provided some respite from those stairs, and my partner and I are on the hunt for a new apartment — with an elevator!
One of my least favorite sets of stairs are broken escalators in public transit stations. More than a number of these “solid staircases” used to frustrate me, challenging my resolve during the busy morning commute to work. There were times when my pride and stubborn attitude (I know!) would prevent me from using the elevator, resulting in a shortness-of-breath flare-up. But it wasn’t long before my sense of independence beat out my more obstinate side. I began using my oxygen concentrator more consistently and saw the elevator as a mode of accessibility that also helps me breathe better.
Opting out of taking the stairs doesn’t mean I miss the stares from wandering eyes or nosy commuters and onlookers. Growing up with scoliosis, I endured my fair share of comments about the curve in my spine and my short stature. While being on the receiving end of stares is nothing new for me, I became hyper-aware when people would stare while I waited for an elevator during my commute.
People would stare on days I wore my oxygen concentrator with a cannula sticking out of my nose. People would also stare on days when I wasn’t wearing my cannula. I couldn’t help but wonder if other commuters questioned why a young man, who presumably looked healthy on the outside, was making use of an accessible option? I wonder why society has such a narrow and myopic understanding of disability and chronic illness.
Many chronic and rare diseases like PH are invisible, in the sense that there are no physical indicators of illness or disability to an able-bodied public. Other members of the PH community have written about their experiences with public transportation and shared the challenges of putting one’s health first, even if doing so feels uncomfortable or comes with an unwelcome stare.
I am grateful that the Lincoln Memorial has an elevator with accessible options, and for the advocates who fought for the national law requiring accommodations for disabled visitors. With my oxygen concentrator on, I chose to climb the stairs, taking my time, to reach the apex of the Lincoln Memorial. Stares were the last thing on my mind.
Instead, I looked across the National Mall at the Capitol and reflected on the items on my advocacy bucket list. There is much more we can and should do to make the world a more accessible and accepting place for disabled people and the chronic illness community, whether visible or not.
Follow Mike on Twitter: @mnaple.
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