AN INTERVIEW WITH ELIZABETH PINBOROUGH
I’ve been excited to share this interview since I first called Elizabeth a month and a half ago. I didn’t know her from Adam, yet we bonded, near instantly, over our shared love of Kate Bowler, experiences with OCD, and the initial disbelief we both encountered after we became ill. I found myself in awe of how ridiculously intelligent and articulate she was. But I was struck, most of all, by how she was the most human human--compassionate, perceptive, and open--that I had met in a long time. I found myself wanting to punctuate her every pause with an enthusiastic “amen” like I was in the pews of a Baptist church-- and I think you’ll quickly realize why.
Tell me a little about yourself, Elizabeth.
I’m a writer and illustrator who lives in Salt Lake City. I love learning languages, studying the brain, and making art of all kinds. The Brain's Lectionary: Psalms and Observations, a poetry and art book about my experience with brain injury, will soon be published by BCC Press. I love connecting with people, learning their stories, and fostering their unique gifts. You can find me swinging beneath one of the trees in my backyard soaking up the fall beauty or listening to a podcast.
How has your experience of the pandemic been shaped by being a brain injury survivor?
So many families have lost loved ones, and so many people are suffering because of the pandemic. It's incredibly tragic and hard to watch from behind my computer screen. I’ve been extremely socially distanced in my house with my family for seven months, and being in quarantine in the pandemic is very similar to the first few years of my brain injury recovery. That has been retraumatizing, and I am having a hard time handling those emotions and PTSD. After my injury, everything in my life fell apart, except for the roof over my head. I was disabled and very ill, stranded at home barely able to walk around my house or feed myself properly. I couldn’t work, drive, or socialize, and all my energy was focused on survival. The chronic physical peril and precarity I experienced then has made me feel extremely endangered now, and I fear having to go through another intensive rehabilitation process that I’m not even fully out of yet.
When I learned that COVID is a vascular disease that causes brain damage, I was in despair. I have done so much to raise awareness of brain injuries and their effects that I've been devastated to see people on social media posting maskless group photos, knowing that somewhere down the line one of their contacts or contacts’ contacts could possibly end up chronically ill or dead. Having a neurological injury like I had is a living nightmare, and it’s too distressing to think about those injuries continuing to happen.
Three years into my recovery I experienced a serious respiratory virus that lasted for four months. I was as sick as I have ever been and as sick as I could be without going to the hospital. I know what a virus can do to cut the body down, and I will not risk that happening to a single person through my lack of caution or through my desire to keep living life in a way that I find fun. I’m in this for the long haul, but it has been harder with more people out and about. I am one of the vulnerable people I wish they cared more to protect or check up on. I have so many privileges in the pandemic, and I am still learning to work with my situation and invisible disabilities that create limitations on my healing progress.
You’ve written a book during quarantine. Can you tell me more about The Brain’s Lectionary?
The Brain’s Lectionary is a collection of poems and linocut illustrations I have made while recovering. I experimented with punctuation to show how language pulled apart for me in the wake of my injury. To illustrate my poems and the experience of excavating a buried self, I drew from artifacts in the Metropolitan Museum of Art. I did linocuts of a knot amulet and Buddhist mudras, for example, and I also recreate early neuroanatomical drawings images done by Santiago Ramón y Cajal and a recent, super high-resolution Tesla MRI of the brain. My relationship with God is at the core of this whole experience, and I explored this through psalms written for the occasion of trauma after a brain injury.
Making the book has been good therapy for rewiring my cognitive and linguistic function and has been challenging given my injuries to my neck, hands, and eyes. I want to convey what a brain injury looks like from the inside out and hopefully offer support to others experiencing aphasia and loss of cognitive function. Being unable to write poems in the early years of my recovery was a huge loss. I am glad to be writing creatively again, and I also have a lot of post-traumatic grief from having my identity as a poet taken away for a time (a time when I needed it most).
Could you elaborate on how your injury affected you as an artist?
Art making is one of my primary ways of understanding the world and my emotional experience in it. After my injury, every activity demanded so much brain energy that I could basically only survive, not create. My brain stem, parietal lobe, neck, eyes, and hands were damaged, so fine motor control and detailed eye work was extremely difficult. I couldn’t pursue drawing or writing poetry as a way to cope with my experiences, which was horrible. I grieved the loss of myself as a poet and artist and wondered if I’d ever write like I could before. Now that I have returned to poetry and drawing, I love it. I want to make and make and make.
How do you pace yourself?
This is a daily balancing act I have not mastered. Energy management is one of the most important and trickiest principles in brain injury recovery. I can only do as much as my body will allow. If I push too much, I crash. Because my brain is more healed, I can be pushing without realizing it until I crash later. In the first several years, my window for doing activities was miniscule--I'd be totally out of any energy by 10 a.m. I have built much more of a window over the past five years through daily effort.
In what ways has your injury changed your experience of time?
Thank you for asking this question. My most recent brain injury affected my experience of time in ways that were remarkable and profoundly disorienting. Before the injury, I could tell you what time of day it was, often to the minute, without looking at a clock. After my injury, my guesses would be hours off. I can only conclude that my suprachiasmatic nucleus was injured, which acts as the body’s master clock, processing light from the eyes and releasing melatonin, because for the first four or so months I could only sleep for 3 or 4 hours a night. Getting such little sleep while having a deeply injured brain contributed to the most intense physical, emotional, psychiatric, and spiritual pain I have experienced in my life. I’d spent the decade of my twenties dealing with intense mental health challenges, and this pain was many orders of magnitude worse. I felt like I was being burned alive from the inside out. It reached an even deeper core.
I also didn’t know where I was in the timeline of my life. My life’s clock stopped on the day of my injury, erasing memories and cutting off organic neurological access to a whole catalogue of my experiences, hard-earned knowledge, and skills. For several years, I felt stuck in the timeless post-injury land of 2015. It’s only been in the past year that I’ve felt like I’m returning to something more like my previous wiring and relationship to the arc of my life's timeline. Access to my memories keep coming back, but I still feel disoriented because of the way my self became disorganized. The whole experience really highlights for me how time is created by the brain.
Did this loss of identity cause you to go through a grieving process?
My injury had a profound effect on my sense of self. My conscious reality was not the same for several years. I did not feel like myself internally. I had died, and yet I looked fine. No one saw what I had lost or came to mourn with me. My personality was the same; my intellect was intact. Yet, I could not functionally perform my self like I had.
My entire life I identified with the life of the mind and with words, and I lost access to both. Losing a core part of who I was, I felt acute psychological pain and grief. I could not use my cognitive abilities to think my way through problems in the deep way I was used to. I lost memories and the ability to quickly remember certain things. I felt a literal wall in my head blocking information, and whenever I would need to get through the wall, I would have to build new connections to go around or over it. Not being able to do simple tasks like walking around my house, getting out of bed, making food, getting dressed without being exhausted was devastating. Losing my self-efficacy was humiliating.
I still feel grief. I process that grief when I have to expand my abilities to climb over that wall, to gain more energy, to remember more, to add more complex tasks to my routine. I feel grief when my abilities fall off, and I am stuck in bed wishing I could be doing anything but resting.
But, in many ways, you feel like your injury ultimately deepened your understanding of yourself?
By leaps and bounds, yes. My recovery has been a constant self-education project. I have done thousands of hours of research to find information that explained the damage my brain experienced, the resulting symptoms, and how to heal. My studies included the fields of child development, developmental trauma, brain development, neurodivergence, and generational trauma. The knowledge I have gained has been really irreplaceable in how I have come to understand myself.
Looking at the whole picture of my life through a neurodevelopmental lens has shifted how I see my unique brain and my specific neurological challenges throughout my life and after my most recent TBI. I’ve done a lot of generational healing work, too, reckoning with the legacy my ancestors passed to me and how it has affected me on a neurobiological level. I have gained a better vocabulary for my emotional experience and an ability to identify what my emotions are telling me and how they feel in my body. I know what panic feels like (and recognize it as an autonomic signal) and how to stop the runaway train of my nervous system (this is still a challenge, and I don't always do it very well). I am in the process of separating my core self from my injured neuropathways, which is super tricky since I experience myself through my brain. I hope that I will continue to find out who I am.
What do you think about the artificial barrier between mental and neurological health in medicine?
I don’t feel they can or should be separated at all! One of the most underestimated factors in mental health is brain trauma. Many forces—including emotional trauma and toxic stress, viruses, and environmental factors—alter how the brain and nervous system function. Having experienced several traumatic brain injuries throughout my life, I have seen how what happens to my brain affects the way my body and mind operate.
Cerebral blood flow, altered neurochemistry, tissue damage, myelination, and genetics all affect how the brain operates. But the picture of mental and physical well-being for each individual is so complex and involves more than the brain. Today people are conversant in the "second brain" of the gut and know that diet can affect brain function. Brain injuries actually injure the brain-gut connection, leading to gut permeability, damaged immunity, and an increase in the likelihood of dying by blood poisoning or a digestive problem after a TBI.
The heart also has an intrinsic nervous system consisting of 40,000 neurons that "actually sends more signals to the brain than the brain sends to the heart."* The state of the rhythms produced by the heart, whether calm and coherent or stressed and incoherent, directly affects cognitive performance. And beyond neuronal function, researchers are even investigating how blood vessels play a role in psychiatric symptoms. To heal the mind, it's important to look at both the body and the brain and consider many kinds of interventions, from nutrition to neurofeedback to exercise.
I also think health-care professionals need to become more skilled at understanding neurodivergence—the many ways brains are wired differently—and factoring it into their mental health evaluations. The world is not made of one-size-fits-all brains. People’s brains are unique and function optimally under a variety of circumstances. I’m highly sensitive, so emotions, physical sensations, and thoughts impact me viscerally much differently than they might someone else without high sensitivity, which causes me to react strongly to stress and stimulation. Learning how to work with my unique body and nervous system has helped me manage my mental health better.
What are the worst and best things people have said and done in regards to your injury?
One person, who also happened to be a doctor, actually laughed in a casual conversation when I mentioned I had a brain injury. Who knows what that was about? Maybe it’s the kind of involuntary reaction where you laugh at something painful or awkward because you don’t know how to respond. We’re enculturated to find brain damage and head injuries funny, so maybe it was a result of that. Another person I told said, “Well, now you’re just as smart as the rest of us.” What a thoughtless, cruel, and competitive way to respond to an injury of any kind. No one would say the same sort of thing if an athlete broke a leg. “Well, now you’re just as fast as the rest of us.” Experiencing disbelief or frustration from medical professionals was hard, and having a lawyer refuse to take my worker’s comp case because I didn’t look injured enough was a painful confrontation with ableism and the kinds of barriers to care and support that people with invisible, dynamic disabilities face.
The kindest thing people have done is simply acknowledge that my injury and disabilities are real and that they affect me. Acknowledging the effort I put into doing anything is truly kind, and I appreciate when people offer their understanding. I appreciate when neighbors drop off a gift or a card to let me know they’re thinking of me.
Has your brain injury made you more open to tackling big things, like your upcoming book? It seems to me that you’ve accomplished this despite your limitations, but also because of them.
For years, I was so afraid of failing and had extremely high performance anxiety that prevented me from fully investing in bigger creative projects, like writing my own books. In the process of rewiring my brain, I realized I could learn anything and that I could learn a whole lot more than I thought I could. Even though my learning hasn’t given me a credential or a set of letters after my name, recovering from a brain injury has given me substantial experience and a knowledge base I can draw from. I have gained more confidence that things will work out because I know I can work every day to make that happen. Tackling some of my bigger dreams, like getting a PhD or living independently, still seem very far away, but I hope that as I continue to practice healing my brain, I will be able to do more one day.
I think Elizabeth models the attitude that you have to cultivate when you’re ill: we didn’t choose it and it’s not fair, but beyond the grief there are possibilities. It’s not blind optimism or the brittle magical thinking that demands it all and demands it now (the kind of reckless wishfulness that so many have fallen prey to during the pandemic). Elizabeth holds her dreams with a loose grip and the patience to persist, to keep marching towards the horizon--even when it doesn’t appear to be getting any closer. An enduring hope can come from redefining what “living” means: nurturing the idea that, regardless of its size and scope, you can lead a worthwhile life.
You can find more of Elizabeth’s writing on her website, Instagram, and Lovely Brains newsletter (I highly recommend subscribing. She discussed our interview in issue 3!)
*Elizabeth is not an affiliate of the HeartMath Institute or Vielight Inc