Facing Down Coronavirus


Hello Lockdown Bubble

This has been a banner year for anxiety with the many underlying conditions Superficial Siderosis patients face daily. The lack of early information; how the Coronavirus would affect the S.S. community. These were all added stressors. We made a personal choice early on to take extreme precautions since Gary is such a germ magnet. In March, I attended a virtual rare disease webinar on how at-risk patients should handle a Coronavirus situation in their household if someone were to test positive. We voluntarily went into a self-imposed lockdown bubble.

When Your Bubble Breaks

Our bubble of isolation burst with our granddaughter’s arrival; Averie moved in with her two-year-old toddler at the end of May. She would begin a new job in a popular high-traffic restaurant when a neighboring State lockdown regulation started to ease. Five days a week, she was exposed to a parade of dining patrons, some of who were very adamant they wouldn’t be forced to wear a mask. 

Averie deserves credit for her efforts; she wore a mask and gloves every day. She entered the house through a backdoor directly into our laundry room. Every night she pulled off her work clothes and put them straight into the wash. She washed and sanitized her hands religiously. Averie followed the guidelines because she wanted to keep us safe.

Not Everyone Is A Team Player

We managed to make it into October healthy. Gary has not been inside a store since the end of February. I try very hard to limit my in-person shopping to two small local stores during low traffic times. Smalltown shopping has its advantages. We have embraced curbside grocery pickup and virtual doctor visits. We are always team players.

It started with an upset stomach Averie thought was from Thai food. Next came the runny nose. She has always suffered from severe allergies, and several co-workers had been tested after passing around a common cold. I was experiencing random bouts of chills with a severe headache that would not go away. 

Averie called from work. She was spritzing perfume before her shift. “I can’t smell my perfume,” I told her to go into the dishwasher area and have someone get her an open bottle of bleach. They stuck it under her nose -nothing. I told her to leave and go directly to the nearest testing clinic. I was now worried about my headache, so I called to be tested at the same facility.

The Family That Tests Together

My husband had been through COVID-19 testing as a precaution back in July after Averie moved into our house. Her toddler had spiked a really high fever, and we had to take her in for testing. You can imagine how sick this poor baby was; she didn’t make a sound when the nurse swabbed her. This was my first nasal swab experience. My one thought? Don’t let a two-year-old react better than a 60-year-old.

The wait for results seemed endless. We immediately went into the care protocol I had received instruction on following during the rare disease webinar. When the results came in, I was surprised to be negative. As we expected, our granddaughter was positive. A fellow employee who didn’t interact with the public had been notified to quarantine. But because they felt fine, this person had chosen to continue working without telling their supervisor. 

It wasn’t long after Averie’s positive test, they too, were fighting a full-blown Coronavirus episode. This person’s failure to take exposure seriously put my family at risk. I found it interesting, with all the temperature screening now going on, Averie never spiked a fever. It seems COVID-19 has one thing in common with Superficial Siderosis- people will not have the same set of symptoms.

The Other Side

Averie was severely ill for four days before her symptoms began to lighten up. She quarantined in her room, eating off of paper plates I dropped at her door during the worst. When she started to feel better, she wore a hospital mask under her cloth mask every time she left her room. Gary and I both stayed masked up inside the house whenever she ventured out. A triple layer of face masks stood between active Coronavirus droplets and us, inside our house for hours at a time. 

Please excuse me if I don’t feel bad about having to put a mask on for your 15 minutes run to the store. I have a profound respect for the frontline workers and first responders who must stay masked for entire shifts. Knowing you are in direct contact with a COVID-19 positive space brings a crazy new level of stress.

But Do Masks Really Help?

I have a hard time believing this debate is ongoing, but I understand research is fluid. With rapidly developing situations, what may have been true a week ago may evolve as new evidence is found. Papers published in March could realistically be obsolete. We choose to rely on our personal experience and anecdotal evidence passed from others’ first-hand experience.

Your heart will break listening to the sound of a two-year-old pounding on her mothers’ door, begging to come inside. Averie was pronounced virus-free after ten days and one trip into the E.R. for a blood clot scare, but those were tough days. The thought of those now alone in an ICU is untenable.

Wash your hands often, and please, wear a mask.

About Rori Daniel

Living With Superficial Siderosis began as a way to keep family and acquaintances updated after my husband Gary was diagnosed with Superficial siderosis in 2014. We invite you to join us as we share the details of our life, finding care, and the search for answers of how to navigate this extremely rare disorder.

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