In the Spellerverse, (a term coined by Elizabeth Vosseller, to designate the community of spellers, practitioners, families, allies, and all the structures we intersect with) life before COVID-19 was hopeful. Underneath the hope, we have coped with the work of creating opportunities, and finding self-expression for spellers. Spellers and their co-regulators did this whilst navigating motor-sensory differences in spellers bodies accompanied with anxiety and co-occurring diagnosis like depression and other mood dysregulating conditions. The work of coping, by definition, means living a life that teeters and totters between moments where we find strength and renewal and those that drain us. Moments, where we wish fiercely for the pain we endure, to just go away.
Our normal involves constant coping
We forget so easily how much and how many things we do in the Spellerverse. Our collective experience is composed of traumas that have encompassed stress, grief, loss, and helplessness. We experience a constant presence of vulnerability. We fear that the support we have cobbled together, depends on the ever present possibility of someone moving away, or a program losing space, or being unable to meet the regulation needs of our loved ones. We have had to create and put together non-existent educational, social and recreational programs and do a lot of things that other communities take for granted, all by ourselves. This is not a set of things that are met by ordinary measures, we are accustomed to working ourselves very, very hard. And into this normal, came the global pandemic, and the Spellerverse temporarily relocated to COVIDLandia.
How does the pandemic impact us?
The pandemic brought in its wake frightening death rates, a move back to epidemic responses that worked in the 1920’s, fear of surfaces, fear of strangers, fear of leaving home, of receiving packages, of food shortages. It brought the need to adapt to virtual learning and working, and a profound sense of isolation. How do circumstances that evoke a lack of safety and danger impact us? Ronald Kessler[1], a professor of healthcare at Harvard Medical School, states that a range of social circumstances such as being a victim of crime, the breakup of a relationship, or abuse can produce significant psychosocial stress. He points to a more fundamental and primal response beneath these occurrences, that triggers primal reactions of loss and danger, that make us more vulnerable. He posits that these feelings of loss and danger could lead simultaneously to both anxiety from danger, and depression from loss.
This fundamental and primal response triggering is familiar experientially to the Spellerverse and especially so in the S2C pedagogy. Debbie Spengler in Co-regulation-the-physiology-of-trust posits that our nervous system subconsciously examines the environment for safety and danger. She quotes Stephen Porges[2], and his term ‘neuroception’ that describes the unconscious work our neurology does to constantly scan the environment for safety and danger. As we know, our spellers have a neurology that in non COVID times is already hyper activated to scan for safety and danger, bringing forward responses of flight, fight or freeze. Practitioners and caregivers work together with spellers to co-regulate through this autonomic system response to allow the more evolved cortical brain systems to be reactivated. The evolved brain systems are amenable to regulation, and are accessible for social engagements such as learning and participating in leisure and recreation.
Research on the impact of COVID, on populations that experience higher levels of anxiety, is already underway[3], and it points us to confirming that COVID stress is indeed experienced at higher levels by people who suffer from anxiety related disorders. They report greater fears about danger and contamination, socio-economic consequences and traumatic stress symptoms. The COVID stress scale developed[4]to measure this experience includes, among other factors, the following –
- Fears about the dangerousness of COVID-19
- Fears about sources of contamination (i.e., objects, surfaces)
- Fears about the personal social and economic consequences of COVID-19, COVID-19 related checking of news media or social media, seeking reassurance from friends or medical professionals; and
- Traumatic stress symptoms related to COVID-19 such as unwanted intrusive thoughts or nightmares relating to COVID-19.
The lack of lifestyle opportunities to manage stress
In the wake of social distancing requirements put in place by a response to COVID -19, the shuttering of restaurants, gyms, beaches, places of worship, schools and colleges took away from all of us the capacity to maintain a therapeutic lifestyle. According to [5]Roger Walsh, Irvine College of Medicine, University of California, significant therapeutic lifestyle choices (TLC’s) include the following
- exercise
- nutrition and diet
- time in nature
- relationships
- recreation
- relaxation
- stress management
- religious or spiritual involvement
- service to others
There is a significant body of evidence, according to him, of their effectiveness in both neuro diverse and neurotypical populations on mental wellness and health. He goes on to say that TLCs are sometimes as effective as either psychotherapy or pharmacotherapy and can offer significant therapeutic advantages. The Spellerverse’s access to these lifestyle supports have been severely constrained.
Layered on top of this, our lives have come unbound with the lack of routines, a separation of learning/workplaces within the family unit and the support embedded in a therapeutic lifestyle. We are reliant on acts of discipline unsupported by natural rhythms provided by daily living acts of going to work, going to the gym, going shopping etc. The lack of structure creates its own cluster of increased stress and anxiety. Dr. Rachel Goldman, psychologist and clinical assistant professor at the NYU School of Medicine states that this results in overwhelming feelings, lack of concentration, and focus[6]. Goldman goes on to say, the lack of structure leads to people having less to occupy themselves with, which in turn leads to an unhealthy preoccupation with stressors.
Role Strain in caregivers, spellers and practitioners
Role strain is a stressor that is different from the more familiar concept of role conflict. Role conflict occurs when we occupy two different roles – student and parent or therapist and parent and are unable to meet the conflicting demands of both. Role strain occurs when we are unable to fulfill the expectations and commitments within a role. Robert Walsh points us to research that shows that when therapists are unable to provide therapy in an ecosystem that includes therapeutic lifestyle choices, they suffer painful cognitive dissonance and role strain as what they offer is limited to brief treatments. This is familiar territory for S2C practitioners who know that the one hour session that they provide spellers does not meet social, recreational, educational and family needs. Caregivers under normal circumstances carry feelings of inadequacy and guilt from not being able to meet their loved ones needs in an environment ill equipped to meet spellers needs. Spellers’ literature and self-reporting is rife with how hard they are on themselves when they are unable to meet an opportunity or participate in life when their regulation needs get in the way.
Role strain exists in the Spellerverse, under normal circumstances. If you were to scroll back up this narrative you see that the normal, the pandemic, the loss of therapeutic lifestyles, and role strain compound to put all actors of the spellerverse in dysregulating disarray. Where does one go from here?
Radical acceptance and recognizing what you can control
To the roots, I think! Radical acceptance has its roots in eastern philosophy and in the American Theologian’s Reinhold Niebuh serenity prayer “Father, give us courage to change what must be altered, serenity to accept what cannot be helped, and the insight to know the one from the other”.
All of us in the Spellerverse will serve to co-regulate each other in this moment of COVID-19 if we allow ourselves to first unpack all that has changed around us, and the extraordinary demands that these times have placed on us. Towards that, let’s all go through a simple exercise.
The author, Lakshmi Rao Sankar, lives in Brooklyn, has a dog named Obi, and is a passionate gardener. She loves reading. She loves second – hand book stores – the sensory experience of handling a physical book, smelling them, discovering the name of their previous owner on the flyleaf.
[1]Environmental Health Perspective, Aug 2007, Environmental Connections: A Deeper Look into Mental Illness, Charles Schmidt
[2] The polyvagal theory: New insights into adaptive reactions of the autonomic nervous system, Stephen Porges Cleveland Clinic Journal of Medicine February 2009,
[3] Journal of Anxiety Disorder, 72, 2020 Do pre-existing anxiety-related and mood disorders differentially impact COVID-19 stress responses and coping?
Gordon J.G. Asmundson, Michelle M. Paluszek, Caeleigh A. Landry, Geoffrey S. Rachor, Dean McKay, Steven Taylor
[4] Journal of Anxiety Disorder, 74, 2020. Development and initial validation of the COVID Stress Scales
Steven Taylor, Caeleigh A. Landry, Michelle M. Paluszek, Thomas A. Fergus, Dean McKay,
[5] Lifestyle and Mental Health, Roger Walsh University of California, Irvine College of Medicine, American Psychologist, October 2011
[6] The Importance of Maintaining Structure and Routine During Stressful Times, Kendra Cherry,April 2020, www.verywellmind.com
