Texas is where I lived when I developed my first autoimmune disease — rheumatoid arthritis — about a decade ago. I have gone on to add several more autoimmune and chronic diseases to my resume over the following years: spondyloarthritis, Raynaud’s, small fiber neuropathy, fibromyalgia, and more.
Texas is where I have survived and lived my patient experience. Texas is my home.
San Antonio, where I live, is becoming a fantastic tech city. It is a military city and a medical city with advanced research and techniques for care. It has taken me years to build a network of doctors who listen to me, treat me as an equal and value what I say when I discuss my health.
I love the people of San Antonio. They are so kind and incredibly open with the LGBTQ+ community. If someone bumps into me at the grocery store, they apologize. If I am walking with a cane toward a door, folks treat me kindly and rush to open the door to help me. This is where I went back to school to become a software developer and got my first tech job.
Texas has my heart. But lately, I have seriously considered moving out of this state due to the COVID-19 pandemic and the lack of protection for those of us who live here, especially chronic illness patients like me, who are at higher risk for COVID-19 complications.
My Heart Sank in Fear and Dread
When I heard our Governor Greg Abbott say earlier this week that he was lifting the statewide mask mandate and allowing businesses to open “100 percent,” my heart just sank in fear and dread.
Texas currently has the second-highest number of COVID-19 infections in the U.S. (2.6 million) and the third- highest number of deaths (almost 45,000). Fewer than 7 percent of all residents have been vaccinated. I also recently read that Houston was the first major U.S. city to report confirmed cases of all the major coronavirus variants that public health experts are concerned about because they may be more contagious and/or deadly than the original strain.
While Texas has been one of the few states that has opened up vaccination for people like me who are under 65 and immunocompromised — #HighRiskCovid19 folks — vaccine administration has been severely disrupted because of the storm and power crisis last month.
Texas is by no means ready to remove the mask mandate and move life to 100 percent “back to normal.”
My World Keeps Shrinking
So, I just don’t feel safe. My options of places I can safely go will be even more limited now. Some major grocery chains have already said they won’t require customers to wear masks in their stores after the mask mandate disappears next week. I have been living like a hermit since March of 2020. My partner has done all major shopping for us and I have been able to work from home.
Since people were starting to get vaccinated, I at least felt a little safer going to stores that weren’t busy because we all have masks on.
Not any longer.
This move to reopen Texas would likely create a vortex of increased cases, unsafe places to visit, and more deaths. It will prolong my hermit life and push me back indoors. It says loud and clear, once again, that my disabled life has no value.
Pre-pandemic I was considered a germaphobe because of the regular precautions I took to keep myself from getting sick due to my lowered immune system. I take a biologic medication, steroids, and take several other drugs that affect my immune system. I never ate out of containers that other folks had already touched with their hands. I never ate after other people at buffets or parties. I always washed my hands before eating, after touching doors, after touching other people. I wore face masks on airplanes, in crowded spaces, and when I had prolonged exposure to other people — year-round. I always made sure if someone was sick, we did not share the same physical space; touching was not allowed.
So when COVID-19 hit, even though taking social distancing and isolation measures was not new to me, it was not any less disruptive or devastating. I was forced to become a recluse with my only real interactions with others being online through video chats, calls, texting, and messaging.
Now, our governor thinks that folks are responsible enough to just follow the rules without any laws. If local jurisdictions still require masks, they are not allowed to punish people or businesses for not adhering to a mask mandate or social distancing guidelines.
On top of all this, I have a history of allergic reactions to biologics, as well as many other intense allergy issues. My doctor and I agree that I shouldn’t get the COVID-19 vaccine yet because of potential anaphylactic risks. I will remain at a greater risk than even most immunocompromised patients. I am even more dependent on people around me to get help keep me safe. And this means not just getting vaccinated, but also keeping COVID-19 cases low by wearing masks and social distancing to prevent its spread.
Think Like a Disabled Person
I learned really quickly in 2020 how little my immunocompromised life was valued by others. Being kind and being safe to help protect me was too much. People downplayed the virus and its effects. They valued their freedom and told patients like me to just stay inside, not make such a big deal about it, that money was more important than our lives.
No one really cared about our lives as long as they could hang out in bars, eat in restaurants, go to concerts, go to the beach, or sing in their choirs. A group of us patients created the #HighRiskCovid19 hashtag about this time last year to give a name and a face to everyone who needs protection because of our health issues. That hashtag was a plea to treat our safety as equal to their dinner parties and playdates. The hashtag was us remind the rest of the world that we do have value.
We are a year in now to the pandemic and its various phases of lockdowns and restrictions. My anxiety and mental health have suffered this year. I regularly see a therapist so I won’t implode. My anxiety is bad. My depression is bad. I am afraid and don’t know when I will see my friends or family. When I actually tried to take a vacation, the Texas blackout threw us into an apocalyptic situation where we had no electricity for four days and no water for more than a week.
As a human and as a patient I am tired. I want a break from it all. I am exhausted on a soul level, deep inside my bones.
But more than all this, I want a break from the constant reminder that my disabled life just doesn’t matter. I want a break from the overwhelming message that keeping me alive is just too damn much in the face of another person’s “freedom.” I want a break from being told that I can’t leave my house because it isn’t safe because of other people’s choices. I want to walk outdoors and have folks socially distance themselves from me because they see and respect that I am wearing a mask, even if they are not. I don’t want to be bumped into or brushed against or ignored so badly that I cannot go to a park because I don’t feel that my wearing a mask is safe enough for me.
Whether others understand or not, I have value. Whether abled folks realize the risk to me or not, I still count. Whether or not people are willing to face how damn selfish they are being or not, I have just as much right to live my life and go safely outside my home as they do. What other people need isn’t more important than what patients like me need.
Governor Abbott’s decision just isn’t right. Rolling back the mask mandate and the capacity restrictions is a huge mistake. We are heading for another spike in COVID-19 cases and deaths.
And I can’t do a damn thing about it except scream into the wind.
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