I will be 39 in April. I’m a mother of a toddler, I’m a wife, an educator, writer, visual artist. I vote. I’m passionate about civil rights and the welfare of others. Though, honestly, I never feel like I’m doing any good in this world, that many times I feel like a cog in a wheel. I strive to leave this world better than before I came to it. I want to make a difference. I give a fuck.
I’d like to say my life has value. Not that it has more value than anyone else, but that yeah, it has value.
I’ve been to the hospital ER 20+ times at this point in my life. I have Postural Orthostatic Tachycardia Syndrome (POTS). I have frequent kidney stones. I have asthma. I was even a research patient for five years. I’m the first documented case of a specific choline transporter mutation—CTL1/SLC44A1 deficiency. There’s even a paper on my cells (fibroblasts). In January, I was hospitalized for unexplained sepsis. It was the first time I’ve been scared in a long time. This is all to say that I have a very complicated health history and a compromised immune system.
Friday, I went to an eye doctor appointment. I’m glaucoma suspect, meaning the pictures of my optic nerves are abnormal and I’ve had high eye pressure readings in the past, so I’m monitored every year for at least five years to make sure I’m not developing glaucoma.
Signs posted inside said to leave immediately if you had a cough or felt sick. To reschedule your appointment and “LEAVE IMMEDIATELY.” And yet a woman in the lobby, across the room from me, was hacking up a lung and literally wiping snot from her nose with her hands. It was so gross.
A nurse I talked to learned I’m immunocompromised and asked me if I’d like a mask. She was the most reasonable one in there. It was like, better to be safe than sorry. I took the mask.
Later, I encountered another nurse who joked around with the doctor—they both seemed to think it was really cool the nurse was going to Disney the next day. To ride as many rides as possible.
After that I overheard a receptionist complaining away to other receptionists that Covid-19 was like all the hurricane warnings. And in a demeaning voice said, “Ohhh it’s gonna be a Cat SEVEN!” and then, “Yeah, and that never happens.” (Maybe she’s the one who let the woman hacking up a lung get through check in.)
Let me be perfectly clear: when you mock the efforts to prevent the spread of Covid-19, you are diminishing the lives of the immunocompromised. When you complain about “over precaution” —that people are blowing this pandemic out of proportion—you are not taking into account the very lives of the people who depend on others to actually take precautions. When you ignore social distancing measures, you put lives in danger. When you whine about your inconveniences, you fail to recognize that there are millions—yes MILLIONS—of us actually legitimately in danger from this pandemic. “In a 2002 paper ‘researchers estimated that around 10 million people [in the United States alone] were immunocompromised, but they counted only “recipients of organ transplants, individuals with diagnosed and undiagnosed HIV infection or AIDS, and patients with cancer.” ‘ ”
That 10 million number doesn’t even include us Dysautonomia patients, and so many patients with chronic illnesses on steroids that further weaken their response to viruses, and people with MS, ALS, heart disease, Asthma, and Diabetes.
Are people supposed to just not live their lives? I hear so many say: Am I just supposed to stop being social?
Yes, for fuck sake, for at least the next couple of weeks, maybe a month, curb your travel in town, across the nation, and abroad, do social distancing, don’t hang in crowds. Because for millions of us, your inconvenience helps “flatten the curve.” Because you could be a carrier to someone who isn’t as healthy as you.
Flattening the curve means that you’re preventing explosive outbreak. Flattening the curve means a slow, steady outbreak allows there to be enough medical equipment, facilities, and medical personnel to take care of all the critically ill patients.
Help those of us this virus may be fatal for by enduring a little inconvenience. We’re counting on you.
