Erin's Heart
By Julie Russell-Steuart
Erin’s Heart
By Julie Russsell-Steuart
My friend Erin’s post-Covid heart hurts. “Anything that gets my heart rate up will cause an insane amount of pain and I'll pay for it for days.” Erin says she’s lost the ability to enjoy the few exercises she was capable of. “I had been able to use a trike and go swim in the pool, two things that I could actually do to keep my body moving.” Most worrisome, the new pain is on top of her heart pericarditis, a condition caused by the Covid infection.
For now, bringing activity levels down means letting go of daily routines like cooking and cleaning. She quells the stress of disability activism with time spent outdoors with her family.
Erin Dahl, founder of Science for Safe Schools, along with three other moms and me, held a sit-in at the Iowa Capitol on August 11, 2021, challenging Governor Reynolds' mask mandate ban: The Story of the Safe at School Sit-In. Erin wrote an ethics complaint against the Senators who signed that bill keeping school districts from protecting communities with science-based COVID mitigations. She encouraged families with disabled students to join the ACLU case against Reynolds. It cited the Americans with Disabilities Act, which protects the right to education and the safety of those with disabilities.
Erin thought she was doing all this to protect her husband, Jay, who has a severe heart condition. “I also am disabled and have a serious neurological condition that cut my teaching career short,” Erin said. “So, I figured if I got COVID, I would probably have some negative neurological symptoms like spasms or gross motor control issues, or the brain fog…”
When Erin and her family caught COVID in early 2023, her husband went to the ER with severe arrhythmias and heart pain. Erin was surprised by her own stroke-level blood pressure, pain and nausea: “I couldn't lay on my left side at all. I vomited for five weeks straight and could not eat anything. I could only drink a little bit of a protein shake to keep the new heart medicines down.”
She didn’t want to, but she went to the ER under the advice of her cardiologist to get an MRI. She asked for masking from twelve different medical providers, one at a time, which she described as “a nightmare.”
Like her, those who are at risk for severe disease face medical settings that offer little protection against COVID. “We have probably 90% of medical professionals unmasked at this point and actively spreading any respiratory viruses they have come in contact with. Then you have people in the building who are usually there because they're sick. So that is a bad combination. And then you have a facility that cannot be avoided by people who are immunocompromised or at high risk, elderly, or babies who can't mask nor can they be vaccinated. So, you have people who cannot afford to take those chances, being forced to take those chances, because there is no choice.”
But Erin wants people to know they have the right to safety. She lobbies her doctors' offices with mitigation “asks” to protect her family, and she shares her template letters with others for ADA rights/ethics standards. (PDF here.) Contrary to misperceptions, any person with a disability can use the ADA. Anyone at all can call on their doctors’ ethical vow of Do No Harm.
“They all have a responsibility and an ethics standard that says they're to put your interests first,” Erin said. “Just because their office said that they don't have to wear a mask doesn't mean that they suddenly don't have ethics standards. That doesn't mean that we suddenly don't have patients' rights. And that doesn't mean that the Americans with Disabilities Act is negated. It is federal law.”
Hospital-acquired COVID infections in those at risk are significant. “It's not like an abstract concept. It is happening every single day—at their doctor appointments, when they're having surgery, when they're in the hospital recovering from surgery,” Erin said. “There was a 6-8% mortality rate from the June 2022 Omicron variant, noted by the CDC. That rate is horrific and that's been known for over a year now.”
Erin helps anyone she can, “When I have time, I will scroll Twitter and if somebody says I have to go to the dentist tomorrow and I'm terrified, then I go hey, have you thought about using the ADA to assist you in making that a safe appointment?”
Julie Russell-Steuart is an artist/printmaker/activist, and Chair of the Disability Caucus of the Iowa Democratic Party. Her publishing imprint is Caveworks Press.
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Thanks for bearing witness and speaking truth we all need to hear. Sending well wishes!
Thank you for writing about the risk of the disease short- and long-term effects. Thank you for mentioning the right to be safe and the lawsuit brought by the ACLU of Iowa. The importance of sticking to truth and principles. The stress of the situation must not have helped at all, I Hope Erin finds some relieve.