Many of our participants expressed safety fears, particularly when those around them were not following protective guidelines. Because of higher infection risk, caution was needed in all aspects of their lives, particularly in the beginning of the pandemic when guidelines were unclear. This lack of clarity caused fears of dying and many to feel that their wellbeing was not valued by society.
Don’t leave home without them: I have two masks, kindly sewn by my mother, so I always have a clean one handy, should I need to go out. When I leave my house, at a bare minimum I have a clean mask, my inhaler, hand sanitizer, and my phone (which isn't pictured because it was taking the picture). Each trip out requires careful planning to avoid as much risk of exposure as possible as my area has been a hot spot in my state.
How I look walking the dog: I spent a bit of time coming up with something that would cover my nose, mouth, trach, and ventilator attachment, then I made a scarf from some leftover fabric. I also spent a good deal of time finding out what I should cover. The general consensus from support groups was that all should be covered.My pulmonary and general doctors said I only had to cover my trach as no air could come from my lungs or enter my lungs.
Stay home: This photo became my social media profile picture for a while. I wanted to remind all of my friends and family that by staying home they were helping me. In many of my conversations, there was a reluctance by people to follow the stay at home orders until I explained how it could literally save my life. Bringing it down to a personal level seemed to get through to even the most stubborn.
I’m not dying tonight: I may look bemused but it belies the anxiety I am feeling, waiting in the emergency room during the COVID-19 epidemic. Normal doctors won't see me in their offices. At urgent care, I am sent to the emergency room. But they don't want me either. "Are you dying tonight?" one ER doctor asks me. "Then go home." I'm not dying tonight. But something is really wrong. And so many like me -- those with chronic health care issues, invisible diseases, and immunocompromised states -- are slipping through the cracks of the U.S. health care system.
A sign for the door: My daughter lives overseas. She ran across this in her town being distributed to at risk people. She sent it to me for me to put on my door. Some delivery people actually pay attention.
