Due to the COVID-19 pandemic, the world will be a different place by the time I finish writing this blog post.  Everything is changing before our very eyes on a minute to minute basis.  We are in a tornado of news; at this singular moment, March 20th 2020 at 4:00pm CST, the top news stories is that China’s death toll is over 3,000, Italy’s death from COVID-19 has now surpassed China’s, and Illinois has joined New York and California’s stay at home order. Tomorrow, we will be deluged by even more alarming headlines.

The elderly and the medically fragile are especially vulnerable to COVID-19, and that means that anyone with Familial Dysautonomia (FD) is at serious risk.   Many patients with FD have lung scarring due to frequent pneumonias.  Most often, these constant pneumonias are caused by aspiration, meaning that food is misdirected into the lungs instead of the stomach.  A virus which strikes the lungs is dire enough, but assaulting lungs that are already weakened is panic-worthy.

So, how does the FD community, and any medically fragile community stay calm when COVID-19 exponentially amplifies our well-founded preexisting fears?  I think everyone has their own coping mechanisms such as deep breathing, meditation, and exercise.  I find each of these to be helpful, especially as we are necessarily forced into social isolation.  However, the one thing I cling to in any crisis is my calming mantra: This Too Shall Pass.

When our son Andrew was ten years old, he was hospitalized for six months in the ICU.  I sat with him from 7am-7pm every day, never leaving the room.  At 7pm, my husband relieved me; he stayed overnight. I was the Sun; he was the Moon.  It was highly restrictive environment.  I never left those four walls during my shift. But much worse was helplessly watching my son endure wave after wave of “autonomic crisis,” best defined as life-threating retching attacks. The combination of isolation and fear and helplessness was overwhelming.  Wringing my hands, tears falling down my cheek, heart wrenching in pain, I kept silently screaming into the universe, “When will this agony end?”  I heard my inner voice calmly answer: This Too Shall Pass.

We had started our hospital marathon when the winter snows fell, and we were discharged in the heat of the summer. Andrew had survived.  We were all war torn but still standing.  Love had fueled our darkest days, and humor began to reenter our lives.  Many days later, when I shared my calming mantra, This Too Shall Pass, with Andrew, he amusingly added, “You know why, Mom?  Because that’s how time works.”

Like any crisis, COVID-19 will pass, because that’s how time works.  Hold tight to the dependable passage of time.  Fill current moments with calmness and focus on the inevitable better days ahead.

Ann Slaw, JD
President, FD NOW
Parent to young adult with Familial Dysautonomia