By Erica Forest, LCSW
Rodrigo Garcia penned a letter to his deceased father, Gabriel Garcia Marquez, in the New York Times on May 6th, 2020, explaining that we were in a pandemic; he wondered what his father would have thought of it. The titles of Garcia Marquez’s most famous books, Love in the Time of Cholera, and One Hundred Years of Solitude, were referenced often at that time. Two months into lockdown in the US, Garcia tried to reflect on what was happening, but found himself coming up short. He wrote:
“A few weeks ago, during our first few days sequestered at home, my head was straining to explain to myself what it could all mean, or at least what could come out of it. I failed. The fog was too heavy… It seems for now that I’ll have to wait for the masters, present and future, to metabolize the shared experience. I look forward to that day. A song, a poem, a movie or a novel will finally point me in the general direction of where my thoughts and feelings about this whole thing are buried. When I get there, I’m sure I’ll still have to do some of the digging myself.”
I remember reading this and feeling comforted that someday, someone might tell us what happened and how to feel about it all.
Listening, recently, to The Light We Carry, by Michelle Obama, I found myself inspired by her attempt to synthesize what she experienced in 2020, and began to do my own digging.
Scrolling through my phone, I found screenshots I took of NY Times headlines that resonated with me in those early days: “It was Just Too Much’: How Remote Learning is Breaking Parents” (8/27/20), “How Millions of Women Became the Most Essential Workers in America” (4/19/20), “Why Did Hundreds of Thousands of Women Drop Out of the Workforce” (10/13/20), “The Pandemic Created a Child-Care Crisis. Mothers Bore the Burden” (5/17/21), And, “The Pandemic’s Toll on Children with Special Needs and Their Parents” (7/27/20).
Like the women cited in the articles, the complete collapse of the child care and educational system as we knew it shook my own house of cards to the ground. My children, and our family’s mental health, needed me full-time. Quickly it became apparent that the squeeze was too much, and most of my working life would need to stop.
I did not, however, relinquish it all. I needed it. The cancer and bereavement support groups that I facilitated over Zoom were essential to my sense of self, and provided perspective to my own suffering, and a balm against my feelings of helplessness.
I held a space for people to come together in their pain, joy, grief, fears, and hopes. In turn, they provided me with an experience of deep human connection around the profound existential questions of life, and healing togetherness at a time when the world seemed to be falling apart.
Over time, group members discovered their continued capacity for connection, the continuity and adaptability of the self, and of the regenerative nature of hope. For me, these groups were the grounding, immutable stepping stones of perspective, presence, and connection through what otherwise seemed like a time of fragmenting self.
Katherine May writes beautifully of the times when we feel we have dropped out of life, and entered a separate space she calls “Wintering”. She writes, “Wintering is a season in the cold. It is a fallow period in life when you’re cut off from the world, feeling rejected, side-lined, blocked from progress, or cast into the role of an outsider…Perhaps you’re in a period of transition and have temporarily fallen between two worlds.” (May, Wintering, pg. 10).
I read Wintering in the Spring of 2020. May’s words were helpful to me during the eerie shut downs of the pandemic, and to my clients. They also spoke to the feeling I had as a parent whose children’s needs, and the profound misunderstanding we received about them, made me feel doubly removed from the world.
Katherine May gave me another gift during the pandemic, writing also that she was diagnosed with autism as an adult, her neurodivergence missed, or unidentified, her entire life. Through her words, the “unthought known” in my experience as a parent became beautifully clear.
May’s story led me to quickly discover many other people’s experiences of missed autism. As well as stories of parents of neurodivergent children (particularly girls, or AFAB) whose desperate attempts to advocate with medical, mental health, and educational professionals for their children’s needs to be seen were responded to with gaslighting, shaming, and misdirection, with suggestions of “poor parenting”, needing “stronger boundaries”, or “attachment problems”.
As I dove into these stories I understood that there is a giant chasm between the profoundly limited, gendered, “outside-looking-in” DSM diagnostic criteria of autism, and the diverse, full, lived experience of neurodivergent individuals and families.
After many painful disappointments with educators, mental health professionals and doctors who would not, or could not, accurately recognize our family experience, a realization during the pandemic took hold: I already knew what was real, and had the guides I needed to walk my family to a solid, self-knowing ground. We had the voices of the many diverse autistic adults who were openly sharing their life experiences and paths to self affirmation in books, articles, and on social media.
Like Katherine May, these people provided a mirroring, and saved us from the rage of feeling unknowable and unhelpable. Holding them in my mind, my family is doing the difficult work of healing ourselves from the trauma of our own misunderstanding.
As I come full circle to Rodrigo Garcia’s words, I realize that I have emerged from these pandemic times no longer waiting for the masters to tell me what has happened. I am doing something much better:
I am trusting myself to know my own experience. And that is enough.
Erica Forest, LCSW/LICSW facilitates Zoom support groups for parents of autistic children and for late-diagnosed autistic adults. She has family therapy training from The Ackerman Institute for the Family, and is a 2019 graduate of the Foundations of Psychodynamic Psychotherapy Program at WCSPP.