In the middle of the night, I toss, turn, and wonder what bad news I’ll hear or read in the morning. I breathe slowly and deeply watching my thoughts: whom have I possibly seen for the last time, what will the world be like after the pandemic, who will be president—then drifting back to sleep. I awaken every morning not completely rested but profoundly grateful to be alive and face the day with energy and determination to get through the crisis.
Working from home, in relative safety, I am privileged, able to keep working, with the opportunity to make a difference taking care of people as best I can through teletherapy while keeping social distancing. But, “How Do You Shelter in Place When You Don’t Have a Home?” writes Eliza Griswold in The New Yorker on 3/26/2020. This article describes the work of a free healthcare clinic in Philadelphia that is part of the Catholic Worker Movement, a social justice organization. Homeless people come to take showers and use the bathroom, in addition to basic healthcare. Around the country, shelters and nonprofits have been gearing up to serve an estimated 550,000 people who have 10 times more risk of contracting the virus. (photo)
At Jefferson Hospital in Philadelphia, as reported by 3CBS Philly, an emergency room nurse, Kristie Bowen, has been forced to make a painful decision to keep her family safe. Eight days ago, she decided for her children to stay with their grandparents for all of their safety. She shows up after work and sees them through the storm door. (photo)
These are the images that capture the moment we are living in, and stories like this place my own fears in perspective as my family and friends are safe and healthy, at least so far as we know. In my life as a psychologist, specializing in autism and various other special healthcare needs, people’s shared human experiences of the pandemic took center stage:
In the wake of mass traumas, such as earthquakes and tsunamis, people rush in and want to help. Now we're being told to keep a distance because it's the best way to help ourselves and others. The waves of COVID-19 are rising daily and have not crested yet. We are living in a state of heightened fear and hyperarousal—we haven't got to the “post” phase of the trauma. Posttraumatic stress has become a common expression, but less common is the posttraumatic growth that comes from it in the form of the lessons we learn from really hard experiences. We humans are a resilient bunch bouncing back from adversity over and over. This pandemic is unprecedented as we rise to meet the unknown challenges that lie ahead.
The fathers’ support group, I co-facilitate with Michael Hannon, Ph.D. met via Zoom and didn’t skip a beat as we talked about what it means to be fathers with new norms during the pandemic crisis. Those who must work outside the home must be especially cautious. HVAC technicians, airline attendants, and hospital employees in our group cannot work remotely. One father related how everything normal had been taken away and that being out of his comfort zone has made clear that we are not in control, but we are in it together through the chaos. He leans on his Muslim faith. Another father shared the sad news of relatives being tested for COVID-19, and how they no longer think the pandemic is a hoax.
Jack Freedman poses for a photo with nurse Dawn Law (right) and other workers from Lincoln Health Care. (Photo provided by Jack Freedman)
Fathers of medically fragile children quickly went into quarantine even without symptoms like the nurse mentioned above. One father started coping right away by reading his daughters bedtime stories via FaceTime. Privately, he cried about not being able to be physically with them at bedtime, but he showed up every night on FaceTime and gave them the happiness of his attention even though they missed him. The home health care workers who serve these children are especially at risk as they must take public transportation in many cases and go in and out of various homes, as in this article featuring Jack Freedman, the son of my friend and colleague Al Freedman, Ph.D.
Online digital instruction has posed new challenges particularly for mothers, and especially when both parents might be working from home. Unfortunately, race and class have not taken a holiday from unequal distribution of online resources, both due to the digital divide as well as the inability of many urban school districts to provide this for children. Children with autism who can speak for themselves and keep themselves occupied with online instruction or other activities, on the other hand, are often reported to be doing better than their neurotypical siblings. They report less pressure to interact socially which is a relief as well as the absence of any bullying. Conversely, autistic children with limited verbal skills are extremely challenging without any structure to their day, and this is a considerable burden for their families with no end in sight to the disruption of their schedule. Dr. Gil Tippy's For on the Floor videos are useful for children all along the autism spectrum for Floortime during the virus shutdown.
My good friend and colleague, Dr. Stephen Shore, told me that being sheltered in place with his wife in Newton, MA feels like being on a spaceship to another planet. We wonder together what life will be like on this planet afterward. Self- advocate Michael John Carley has an extremely useful Primer on COVID-19. He explains what's the same and what's different for spectrum adults and gives extremely good advice on how to consume recommended nonsensational news media calmly and intelligently, which is very helpful for everyone in these times.
Several mothers have spoken to me about the pain of not being able to visit their autistic children who are in residential placements because they need round the clock care. A mother in my practice called upon a former therapist for her son to make a social story to help him understand why his mother was not there for his weekly visit. Likewise, I have not been able to visit my own son due to the pandemic, but his program has sent me a photo where he is clearly happy and having fun with his staff in the park.
Tariq (right) and Staff in the park
Physically and mentally disabled people, including one of my patients, are reacting very strongly to the work from home accommodations that are being granted to nondisabled people due to the COVID-19. Many of these folks have asked and have been denied these reasonable accommodations Some have even lost their jobs as a result. This makes it painful to watch what they have been told were impossibilities or unfair arrangements be quickly and widely implemented.
Many speak about the “silver linings” of being less selfish, more compassionate and patient with partners and children, both neurotypical and neurodiverse. Expressing gratitude, a grandmother told me that “even the little she has is huge.” Many in hospitals and other human services face their fears openly but seem more concerned about their clients than themselves.
“Zorba the Greek” used the phrase “full catastrophe” to describe the wide spectrum of life—all the joys, sorrows, tragedies, and possibilities that open as we live. Especially now, we can be angry, relieved, sad, hopeful, ashamed, scared, and peaceful before we even manage to get dressed and have breakfast in the morning as we experience an event that knows no borders and circles the globe. We can and must rise to the occasion.
In my lived experience during the pandemic and listening actively to others, I find a deepened understanding of our shared humanity. Despite the palpable fear and anxiety of what lies ahead beyond our control and comprehension, I see and feel increased compassion and loving kindness. In crisis, we have an opportunity to become more fully human. This growing connectedness and awareness of our similarities has the potential to tear down barriers, unite us globally, and help us be our best selves and effect lasting social justice for our whole human family. This is my fervent hope regardless of what personal fate awaits me.
In these times without a playbook, poets can be prophets. I was particularly moved by the conclusion of this poem, copyright by Lynn Ungar, on one of my favorite NPR shows, On Being.
Pandemic
Do not reach out your hands.
Reach out your heart.
Reach out your words.
Reach out all the tendrils
of compassion that move, invisibly,
where we cannot touch.
Promise this world your love--
for better or for worse,
in sickness and in health,
so long as we all shall live.
