Simon was a young man struggling to stay afloat in the present, anchored down by traumas of his past. He was raised in a neighborhood plagued by poverty and crime, and as a teenager was shot in his spine, a merciless act by a malicious bully who thought it more humiliating to cripple his foe than to kill him outright. As a result, Simon became paraplegic, losing his leg function, his bladder control, and his sense of self-worth.
As the rest of his teenage body grew, his thighs and calves atrophied into pathetic brown sticks. Wheelchair-bound and barely 20 years old, he became so entrenched in depression that he spent entire days sitting still, allowing himself to develop pressure ulcers on his buttocks, which soon became infected and spread, like poison, to his bones and through his blood. It was a stark sight to behold, to peel the sticky beige bandages off his glowing, caramel skin, and see it suddenly wrinkle into raw, pink tissue, then plunge downward, toward bone, the cavern seeping with frothy, yellow pus.
When I first met Simon, I found his acute physical injury measured equal in devastation to his chronic illness of isolation. When I inquired about his family medical history, he insisted he had no family. When I asked where he lived and how he supported himself, he insisted he was “fine on his own” (and ultimately acknowledged sleeping on street corners, though emphasizing, “I like it that way”). When I pleaded for an emergency contact, in case anything happened to him, he refused to provide a name.
Although Simon had wheeled himself into our emergency room of his own accord, aware that he would die without medical attention to his wounds, he also regularly threatened to leave us. Despite knowing the intravenous antibiotics we provided were saving his life, he felt we were ‘trapping’ him inside a hospital of chronically, complexly ill patients, in whom he could not see himself, perhaps in the same way he felt trapped inside his own body—a young soul, a sharp mind, a cripple’s body. He resented that we refused to let him leave the floor unattended: a legal obligation for me, a prison-like infringement on his independence, for him.
His mood shifted as rapidly as his wheelchair would speed up and down our hospital hallways. Back, and forth, between his room and other patients’ bedsides, zooming to the nurses’ station, his dark, penetrating eyes yearning for reciprocal contact from his caregivers as we busily typed daily progress notes into our computers, then wheeling over to the nearby elevator bank, where he demanded our attention by threatening to leave the floor, or even the hospital, if we didn’t come immediately. He was quick to celebrate the kindness of doctors and nurses who attended to his wounds and to his words, playfully concocting warm handshakes of appreciation, but he was even quicker to condemn the rudeness of anyone who showed him the slightest sign of disrespect, the most serious offense being the touching of his wheelchair without permission.
To him, it was equivalent to physically violating his very body.
Simon’s volatile energy disturbed the workflow of most of his caregivers, but I felt his complaints to be mostly valid. He did not belong in a hospital, after all. His wound-care made it past the acute stage and he could now be cared for in any sterile setting: a nursing home, a clean shelter. Most people–especially young, healthy people–would go home at this point, with the help of family or a visiting nurse, but Simon had no home and no family. On his behalf, our social worker applied for admission to a variety of nursing homes and shelters, and he agreed to stay with us as we waited to hear back.
As we waited, Simon continued his unpredictable waltz of emotions, pulling me close and pushing me away, only to expect me to twirl back toward him. By the end of our first week together, I found myself like an exasperated mother, chasing him out to the front of our hospital building after he eloped from the floor in his wheelchair. He had stopped to tell the hospital police exactly what floor he came from, hoping I would come after him. When I arrived at the front doors, flustered and frustrated, biting my tongue to avoid lashing out at him for what I felt was selfish behavior, he softened his stance, giving me permission to wheel him back to the elevators.
I pushed his wheelchair in silence, my brain reeling with self-conscious concerns–should I have just let him go? Does this make me look weak? Am I trying too hard to change someone who can’t be changed?–until Simon suddenly sat up straight, and shouted out, a new giddiness in his voice.
“It’s a boy, ain’t it!”
A very pregnant woman who was waddling beside us in the hallway looked at Simon, puzzled, but amused. With a raised eyebrow she asked, “How’d you know that, honey?”
Simon just smiled, gazing at the woman and her belly, then whispered up to me, “Boys are longer, girls are wider … but really, it’s my gift,” he said, satisfied with his prescience. Celebrating Simon’s quirky clairvoyance became a tradition for us over the next couple of weeks; if a pregnant woman passed us the hallways, he would look to me with a smile, then shout gleefully to the mother—Boy! Girl! Twins!—and each time, he got it right, to the mother’s surprise, and our shared delight.
In noticing this detail about Simon’s sixth sense–a detail he considered core to his character–he finally, I began to observe—as he gave me access—other key details of his identity. He had been telling the truth, in his own way, about not having family; one day he explained to me that his mother, a single parent, had died giving birth to him, that his foster parents sexually abused him, that he had ended up a teenager in the city prison with no one to bail him out, and that he ultimately tried to hang himself from his cell ceiling with an old red sweater, after the loneliness became unbearable. He also had neglected to tell me that he was a father now, too, of a three year old daughter, who although was not in his custody, was a key driver of his desire to keep living, to grow stronger, to have a chance at a different life.
At the mention of his own mother, tears welled in the corners of his eyes, and at the sight of his daughter’s home videos on his phone–her sweet voice singing, her chubby hands waving–he smiled with his whole face.
Along with his other doctors, this information prompted me to make a few important changes to his care. Our psychiatrist began seeing him nearly every day for extended discussions about managing present emotions in the face of past trauma. We began seeking out hospital volunteers to take him down to the lobby for fresh air and socialization with strangers. Our wound care specialists taught him everything they could about how to care for his own ulcers, stuffing his backpack full of extra gauze and tape and antibiotic ointments, in case he did decide to really leave one day.
Days passed and Simon’s 23rd birthday was approaching. We still hadn’t found a place to send him (his prison record was preventing him from being accepted to most every nursing facility in the city). With a devastating darkness, Simon looked ahead to his birthday more as an anniversary of his mother’s death than as a celebration of his own life. He became more moody and labile as the day approached. Every day, he threatened, with more gusto, to leave us if we couldn’t find him a facility to call home. Every day, we pleaded with him to be patient, to stay with us until we found him a residence, rather than risk having his wounds re-infected by living on the street. We even tried sneaking him a birthday cake, and a card with all our personalized greetings, to signal our care and concern. His voice cracked as he read our card aloud, reading every single line of text, as though each supportive comment indeed gave him some small morsel of sustenance.
Yet, as I expected, even our best intentions were not good enough to counter the very real distress that Simon faced everyday: a young and otherwise healthy young man trapped in a healthcare system (and really, in a society) that was not designed to take care of his complex needs. His tipping point was ultimately an unassuming nurse, new to the floor, at the end of her own long day, who did not notice Simon pacing the hallways in one of his pensive, brooding moods, and did not notice as he tested her, reaching past her waist to grab a blanket from the linen cart she was pushing. “Please don’t take those off my cart,” she chastised him, sternly, grabbing his wheelchair handles and pushing his wheelchair out of her way.
Her words were the strike of a match in the face of years of pent-up frustration. Her hands to his wheelchair were the dropping of a flame onto a pile of explosives. Without warning, Simon’s strong, muscular arm lashed out and struck her in the flank. He wheeled immediately to the nurses’ station, and with a transforming rage he verbally eviscerated each and every individual in his sight, screaming out vulgar, personalized insults and vile, frightening threats. When police officers, hearing the commotion, arrived, he was not intimated but rather even more emboldened by additional audience members.
Simon was either beyond himself, or finally, completely, in touch with himself, in touch with all of the hurt and anger and hate that has been poured into him for years and years. Explosively, he let it all come screaming out past his lips. Rejecting everyone, everything, in his sight, after a short lifetime of being continually rejected.
He wheeled away from us, still shouting. He did not want anyone to follow him this time.
Simon’s story is a painful but all too common example of how social isolation from a young age, in the form of abuse and trauma, affects individuals for the rest of their lives. And not only their mental health, but their physical health, as well. Stories like Simon’s also leave caretakers wondering (whether doctors, nurses, therapists, or family and friends, and especially those not formally trained in psychiatric care): what can I possibly do to help when someone’s wounds run so deep?
While exploring a scientific answer to this question, I came upon two core physiologic concepts—“allostasis” and “allostatic load”—that help explain Simon’s inner pathology, and how a caretaker may be able to intervene. The concepts are summarized precisely by Dr. Bruce McEwen in the Journal of Neuropsychopharmacology (1) as follows:
The primary hormonal mediators of the stress response, glucocorticoids and catecholamines, have both protective and damaging effects on the body. In the short run, they are essential for adaptation, maintenance of homeostasis, and survival (allostasis). Yet, over longer time intervals, they exact a cost (allostatic load) that can accelerate disease processes….
In anxiety disorders, depressive illness, hostile and aggressive states, substance abuse, and post-traumatic stress disorder (PTSD), allostatic load takes the form of chemical imbalances as well as perturbations in the diurnal rhythm, and, in some cases, atrophy of brain structures. In addition, growing evidence indicates that depressive illness and hostility are both associated with cardiovascular disease (CVD) and other systemic disorders.
This means that chronic social stress, experienced day after day, whether the stress of abusive relationships, or the stress of fearing harm to our bodies, exacts a toll on our bodies, revving up our body’s emergency response over and over again, in a way that obliterates our chemical balance, changes our brain structure, and causes disease in different body systems.
But how does a single bad social experience (a mother’s death, a caretaker’s abuse, a friend’s betrayal?) accumulate into an entire allostatic load? Can a single insult set one’s fate for life? Or do experiences need to amass or multiply over time? According to Dr. McEwen, one of the most powerful risk factors for ending up with a heavy allostatic load later in life is “early childhood experiences of abuse and neglect that … lead individuals into social isolation, hostility, depression, and conditions like extreme obesity and cardiovascular disease.” When I think about Simon–and the case of most children who experience violence and emotional trauma, without an iota of social stability or support available—I can understand the enormous allostatic load he carried with him every single day. I can imagine the damaging toll that trauma was taking on his body over time, keeping him from healing and moving forward.
Dr. McEwen’s article was published at a time when the concepts of allostasis and allostatic load were still somewhat new to medical literature, however they have quickly developed into an entire field of study termed “social genomics” that studies the numerous ways that social stress literally changes our genetic makeup in a way that predisposes us to illness and afflictions. As a medical doctor, it is important to me that doctors and patients alike are aware of this growing field of study, because if there’s a single thing we can do in the face of a patient with great trauma, it is to make a connection with one another; something as simple as a good relationship does have definitive healing powers. Healing comes when we listen to the patient’s background and experiences, asses what kind of allostatic load they carry from the past, and understand what type of social support is present (or lacking) at the moment. And healing comes when we apply what we learn about a patient to the medical treatment we provide. Physicians regularly calculate “risk scores” for conditions like heart attacks and strokes to guide medical treatment, and while these risk factors include sex, age, and past medical history, they do not include the notion of a patient’s allostatic load, despite the science being clear that a high allostatic load leads to higher risk of certain diseases and increased mortality. Maybe it’s time we begin including it?
Understandably, it is difficult to incorporate the notion of allostatic load into clinical practice, as there are not yet official tools or validated surveys by which we can precisely measure an allostatic load. But until such tools are refined, how can we think wisely about the physiologic effects of relationship-building? In a beautifully written paper from the Journal of Internal Medicine, by physician-researcher Dr. Herbert Adler, called “The Sociophysiology of Caring in the Doctor-Patient Relationship,” Dr. Adler describes how the act of empathetic caring is not only a moral obligation doctors have towards their patients, but also a medical intervention in and of itself(5):
[T]he doctor can use the concordant relationship to de-escalate the sociophysiologic feedback loop by responding to the patient’s distress with the combination of compassion and equanimity recommended by Osler: “No quality takes rank with imperturbability … calmness amid storm … without at the same time, hardening the human heart by which we live.” The doctor’s compassion can engage the patient’s feelings along with the accompanying physiology, so that the doctor’s equanimity may shift the patient’s physiology toward homeostasis.
Interestingly, Dr. Adler’s paper describes empathy by the physician not as an act of “feeling what the patient is feeling”, but rather, giving the patient permission to feel whatever it is they are feeling, and acknowledging the feeling. Rather than matching distress with distress, meeting chaos with calm. It may not be able to transform a patient’s life suddenly in a better direction, but it could be useful in helping patients from further spiraling in a negative direction. And for young people like Simon, a man who aside from his ulcers was otherwise in prime physical health, helping a patient to find even moments of calm and balance could help to de-escalate the emergency response system, and help protect their body from damages that could lead to disease and death in the future.
These days, I think of Simon often, most often when I see the round bellies of expecting mothers passing by in the hallway. I wonder how he would have called it, and wonder how life might have called him differently, had he received more social support from the very start.
- McEwen BS. Allostasis and Allostatic Load: Implications for Neuropsychopharmacology. Neuropsychopharmacology. 2000;22: 108–124.
- Ruberman W, et al.Psychosocial influences on mortality after myocardial infarction. New England Journal of Medicine. 1984;311(9):552-9.
- Fortmann AL, Gallo LC, Philis-Tsimikas A. Glycemic Control Among Latinos with Type 2 Diabetes: The Role of Social-Environmental Support Resources. Health Psychology. 2011;30(3):251-258.
- Documėt PI, Bear TM, Flatt JD, Trauth J, Macia L, Ricci EM. The association of social support and socioeconomic status with breast and cervical cancer screening. Health education & behavior : the official publication of the Society for Public Health Education. 2015;42(1):55-64.
- Adler HM. The Sociophysiology of Caring in the Doctor-patient Relationship. Journal of General Internal Medicine. 2002;17(11):883-890.