Beneath the Surface
Clinical Social Worker Mary Campbell Jarman’s professional training was put to the test under the worst possible circumstances. Read on as she tells her story of medical PTSD and life after brain injury.
As I’m writing this, it’s been 5 months, 6 days, and 7 hours since I called 911 for my daughter, and yes, we’re still counting.
Up until that moment, my daughter had been relatively healthy and strong. Her entire life was ahead of her. It wasn’t at all on our radar that she would spend the next 41 days in a hospital on a neurocritical care unit, and in a rehabilitation program fighting for her life and recovering from a life-altering stroke, which was the result of multiple blood clots in her brain, and a brain bleed, all of which caused the seizure that prompted the 911 call.
She’s certainly one of the lucky ones. To go from little hope for survival to walking out of the hospital is a miracle of sorts, but if you ask her, she is not a fan of that word. Being labeled a miracle implies you got your happily ever after, and dismisses the powerlessness that places people in miracle receiving positions to begin with. The truth is she still struggles. She still attends multiple therapies every week. She can’t yet work and earn money. She’s watching all her peers go to school while her brain and her body struggle with the simplest of daily tasks. Yes, she lived, but the cognitive dissonance between living and breathing and actually living the life she had pictured herself living doesn’t feel very miracle-ish to her. It doesn’t take much to feel isolated and alone in her experience, which happens to be one of the key ingredients in the soup of medical trauma. But how do you communicate that to someone else? Especially if the people around you are living in the miracle space, unaware of your exertion and pain because on the surface, it’s easier to see miracles than the murky depth of struggle. Add to that difficulty sleeping, grief, transitions, adjustments, new physical symptoms and sensations that may or may not be life threatening, and juggling multiple medical and therapy appointments… Not your typical daily grind. What she would give for the daily grind, living her life, doing her thing. Not interrupted by being a miracle.
Within the medical and mental health community, we have identified the concept of trauma informed care. Simply put, this is a recognized standard of care that allows for sensitivities around the landmine of potential triggers inherent in the sometimes life altering process of diagnosis and treatment. What used to be identified as medical trauma (the activating medical event) is now seen as just the tip of the iceberg. The problem we now face is how our expanding awareness of trauma begins to also expand the potential for identified traumas and triggers within both medical and mental health treatment.
By definition, trauma is anything that presents a threat to loss of life or family. In the clinical world of mental health, thanks to the efforts of Stephen Porges and his working polyvagal theory, we now understand a lot more about what constitutes trauma, and how to potentially mediate trauma responses. In a nutshell, Porges suggests that the vagus nerve, which is responsible for parasympathetic control of heart, lungs, and digestion, can activate either a fight/flight response or in a freeze response, both of which are a sort of reflex to external threats and stressors. The polyvagal theory also identifies a third possible response, that of social mediation, suggesting that through communication with other human beings during a stressor or potential trauma, we can detect features of safety, mediating trauma. How awesome is that? Connect to deflect. Connect to repair. Connect to mediate. Connect to heal.
Until it isn’t, and medical trauma just happens to be that perfectly imperfect storm that isn’t simple. Whether the activating event that leads you through the doors of a doctor’s office is a gradual onset of symptoms or a sudden, life-threatening crisis, you’re there in response to something being physically wrong. Unsafe. Uncertain. Unpredictable. Risks. Side effects. Treatments. Procedures. Tests… Even with the best medical providers, under the best of conditions, the nature of what patients and families encounter in the medical world is potentially the very definition of trauma as defined above: potential threat to loss of life or family.
I’ve gained a new appreciation for medical providers who understand the need to connect, who saw the tears pooling in my eyes as we peered at each other over our masks, and stopped, and said, “Tell me about your daughter,” or “Let me look into that a little more and get back to you.” The job of a medical provider is hero’s work, but what makes the difference between a hero and a superhero in the medical community is presence and connection. Brenè Brown says, “You can have courage or you can have comfort, but you can’t have both.” It takes courage to move out of the headspace of medical expertise and to then bring that expertise down to the level of human experience. Dr. Brown calls this the PRACTICE of courage and compassion: being able to look at other people and offer something that says, “I’m all in.”
Based on the polyvagal response, we know that being all in is what matters. It’s the difference between fight/flight or freeze, and patients who feel safe returning to engage rather than sitting alone in social isolation, ignoring symptoms and avoiding necessary medical care that could make the difference between physical decline and recovery.
Recognizing those signals and cues from patients, both for caregivers and for medical providers, is delicate. There is a fine line between advocacy and fully supporting patient autonomy. In my own observation, we’ve made huge advances in recognizing and mediating fight/flight responses in patients. The movement away from medical and physical restraints is evidence of awareness within the medical community of trauma informed care. However, what isn’t as easy to detect is a freeze response. Medical providers are trained to respond to monitors, alarms, elevated lab results, pain, and disease. The freeze response is often quiet. Silent. Compliant.
In follow-up care, I see that response in my daughter. Even though she expressed just moments earlier what she wants to discuss in her appointment, I see her freeze when we walk in an office, overwhelmed with medical stimuli, bracing herself for what she is worried she might hear or experience. She looks at me, her eyes pleading for me to take over, and on a good day, I read her cues and coach her through what I know are her concerns. Most medical providers understand, but sometimes they press her to respond, and the end result is nothing. Silence. No symptoms, because they aren’t reported. No questions because they aren’t asked. Success. Job Done. And yet deep inside the activated parasympathetic nervous system, trauma has been activated, but not mediated. Opportunities to connect to features of safety in the healthcare environment are missed; frustration and avoidance of the medical system--and treatments needed for recovery--ensues.
Good news. Our daughter is expected to make a full recovery, but like so many of you, we are still trying to figure out what that means. Mostly, we are just trying to accept that this is one of those life altering events where there is a before and after. In this new world, the after looks nothing like the before, and the loss of that dream is significant and real. I think that means we’re newly inducted members of the Head Strong club. Thank you, Abby, Heather, and the rest of you who are helping to give this a voice. We will keep the education coming, because it matters.
Disclaimer: This information is not intended to substitute for medical or mental health care and treatment. Many of these ideas are based on current understanding, awareness, and treatment of PTSD, which can (and likely will) continue to evolve. If you are experiencing symptoms of PTSD, please seek medical and mental health support from professionals in your area.