Sick and Tired – Neglected Illness, Parental Illness, The End of the Day

Last week I had a (for me) truly strange experience. While sitting quietly and alone in my psychotherapy office, out of nowhere, I had a wild dizzy spell. I say “wild” because the room was whirling at such a speed as to be but a blur of splattered color. I had never experienced anything like that before. I quickly tried pressing my feet hard into the floor, a grounding practice I had learned in my first somatic trainings decades ago. I could feel my feet, but the spinning did not slow. I heard a bellowing voice in my head saying, “this is real.” It kept repeating those words. 

I held onto my chair, and eventually, the gyration quieted and ultimately stopped. Stunned and somewhat rattled, I called my husband to tell him. He asked me if I wanted him to come and pick me up. I said I thought I was OK and would let him know if I changed my mind, and then I proceeded to work my day. By the end of the workday, when it was time to drive home, I felt OK, and although I called him to let him know I was getting ready to drive, I felt pretty much back to my usual self. I was careful, and the drive home was unremarkable.

Reflecting with some bafflement, what perhaps struck me the most about this little event, were the words “this is real.” They got me to thinking about my childhood experiences of feeling unwell in any way. Whatever untoward bodily state I might be experiencing was either my “fault”, or it was “nothing.” If I caught a cold or the flu, it was from doing something or being with someone I shouldn’t have, staying out too late, or not wearing enough clothes. If I felt queasy, it would be from eating something I shouldn’t have, eating too much, it being unwashed, etc. If we did not feel well in the morning, our dad would say, “Get all ready for school and see how you feel after breakfast.” By that time, unless I was actively vomiting, which was rare to virtually never, I did not even know how I felt anymore. 

One of the few times I do remember vomiting was in first grade. I didn’t feel well, but I did as I was told and went to school, PS 152, my large New York City public school. At recess, I threw up on the blacktop, and someone drew a chalk circle around it and wrote “Ruth Did This” in large juvenile caps. I was mortified, and the trauma I remembered was that.

When I was almost lethally anorexic, and it was finally impossible to ignore because I collapsed in a public place, it was not viewed as an “illness” but rather “bad behavior”. The response was, or felt to me to be just punitive, with an accusation of stressing my parents out.

Interoception is the brain’s ability to sense and feel the body. It is a survival function that dictates action. If something is “wrong”, there might be some sort of correction or antidote required for equilibrium or healing to be restored. With a lack of mirroring and care, it is inadequately, outright inaccurately, or simply not learned. Perhaps I got so completely disconnected from my body’s sensations that  anorexia might later be more “tolerable.” Perhaps I myself could not quite feel the difference between a “normal state” and a state of starvation. I honestly don’t remember. I do remember that alcohol felt good when I discovered it at around age 14, but mostly because it made everything else “go away.”

I used to boast that in 35 years of private practice, I only missed two days of work due to illness. It was kind of a joke until, in 2015, I was stricken with a nearly septic systemic infection which landed me in the hospital for a week, followed by a week at home lying around watching bread baking YouTube videos. The first time I humiliatingly took a “DNF” (Did Not Finish) from a 200-miles-in-a-day (“Double Century”) bike ride, at mile 163, I was bitterly ashamed. I was utterly freezing. Too cold to keep riding. Sheepishly, I called my husband to tell him and was annoyed that he was relieved and “proud of me” for, perhaps the first time, not forcing it and harming myself in the process. I was ever after sickened by the memory of that ride: a 163-mile embarrassing failure.

There are so many ways that the child’s body experience, whether it be illness, weight, injury, substance use, sexual abuse, or innumerable other iterations, are another insidious form of neglect, and the consequence to the child and later adult’s sensory life, and self-care can be dramatically altered in ways that are long and trying to correct and/or heal. It is not unusual for the body to express the unknown trauma/neglect story in somaticizations that do not fit in any diagnostic box. All too often, survivors of any age are neglected or mistreated by a medical system, ignorant to these symptom constellations or syndromes, and patients are again blamed or told it is “all in their heads.” I have wondered why the way the Pandemic forced the entire world to be focused on the body, health and medical care was somehow a comfort to me. Perhaps this is why.

Reflecting with some bafflement, what perhaps struck me the most about this little event, were the words “this is real.” They got me to thinking about my childhood experiences of feeling unwell in any way. Whatever untoward bodily state I might be experiencing was either my “fault”, or it was “nothing.”

Parental Illness

Some children grow up with a sick or disabled primary parent, even starting from their very birth. Obviously, by no “fault” of their own, the parent’s attention and capability are compromised. Short of more help than most mothers or parents can muster, the child will pay. Pain, by its very nature is consuming, and illness self-focused. A sick or disabled parent will categorically be inwardly focused, and the infant, baby, small or growing child confused about how to get care or even who the caregiver is. For many a child of neglect, the caregiving role begins very early: taking care of the self, the parent, and even younger siblings. Self-reliance may seem like a “genetic” or inborn trait, and caretaking of others an inherent, default, perennial role. It may be the one source of attention they get. I remember how acknowledging my mother was when at the age of three, “Ruthie was organizing the’ little ones’ in play.” It seemed to be a help to the mothers and created some sort of value or modicum of visibility or existence for me. 

Parental compromised physical or mental health, or disability or both, beyond consuming attention and energy, creates a confusion of roles. Who is the caregiver? Who really even needs care? If the parental disability is “subtle” or “invisible,” or something the child perceives but cannot quite name or identify, such as depression or chronic fatigue, even more so. The child might become accustomed to ensuring the parent’s wellbeing, to safeguard the parent’s survival in the hope of “getting” any attention or care at all, or simply out of love, compassion, sympathy or fear of loss. If there is anger or longing, it may be shrouded in shame or guilt or simply be imperceptible. And, of course, it disconnects the child from their own bodily experience, like me.

 

Pain, by its very nature is consuming, and illness self-focused. A sick or disabled parent will categorically be inwardly focused, and the infant, baby, small or growing child confused about how to get care or even who the caregiver is.

The End of the Day

I know numerous adults with long histories of neglect and great loss because of it who find themselves in the position of caring for aging parents. At a certain point of the trajectory toward death, a parent might seem to exist in some sort of neurological limbo. I remember when our dad was in that state, I had to wonder if anything was firing in his brain anymore: if he focused inward, or if, like the neuroimaging scans I have seen of the brain in a freeze state, nothing was online. Toward the end, the only thing that made him appear minimally alive was when he proudly walked his laps up and down the hall, displaying with his fingers how many. He seemed not to know me anymore; I don’t recall him speaking my name ever in his final year. Often, he barely seemed to look up or register when I came in or even when I touched him, although he did seem to like the kisses on the forehead and would smilingly say “thank you, thank you.” He lost his mother way too young and suffered great deprivation throughout his childhood, adolescent, and teen years. 

I did not live with him in those final years. He had a second wife with whom he lived, and a truly angelic hired caregiver, whom I believe he loved more than anyone. She blessedly performed all the unsavory hygiene tasks that he was no longer able to do for himself with exquisite gentleness and love. We were all lucky to have her. 

Children of neglect who find themselves in the position of live-in primary caregiver to the elderly parent who by now is as absent as the unlit brain scans may find themselves trapped in a tussle between duty, resentment and guilt, perhaps even love, and sympathy and compassion, all having it out inside of them. Meanwhile, quantities of resources, financial, time and social opportunity are expended, compounding the lifetime of loss due to neglect. Sorting the morass of feeling may be a Sisyphean and ever-changing task. The absentness of the vacuous aged brain may be a living reminder of the absent, vapid childhood parent. They are back in the “belly of the monster” with all the incumbent grief. Oy vey. All the objectives of healing from neglect collide as they find their way to a sustainable ending to the parent’s life that will allow the survivor to live with themselves most comfortably after the parent’s passing.

There is no simple “fix” for all of this. We all find our own way. The best I can offer are the timeless words of the Dalai Lama, who is known for saying, “Be kind whenever possible. It is always possible!” I add, “to yourself, that is!”

 

Children of neglect who find themselves in the position of live-in primary caregiver to the elderly parent who by now is as absent as the unlit brain scans may find themselves trapped in a tussle between duty, resentment and guilt, perhaps even love, and sympathy and compassion, all having it out inside of them.

Today’s Song:

My book “Working with the Developmental Trauma of Childhood Neglect: Using Psychotherapy and Attachment Theory Techniques in Clinical Practice” was published on August 31st. It provides psychotherapists with a multidimensional view of childhood neglect and a practical roadmap for facilitating survivors’ healing.

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