The Trauma Of The Supermom – Taking Care Of My Chronically Ill Daughter

By Anna Penenberg

The moment I opened the letter and saw the word positive, I felt my insides drop to the floor. As if my life hadn’t already been completely disrupted! Little did I suspect how much more intense it was going to get, how much more we were going to lose. In that microsecond my whole body braced, knowing that in spite of the diagnosis, which seemingly gave us a path to recovery, we were not out of the dark yet. My youngest daughter, Dana, and I entered a myopic existence that had a name. Lyme disease.

Before the diagnosis, Dana’s condition had no name and no exact treatment. In the face of her devastating and mysterious symptoms, I had been managing my strength and presence by indulging in hopeful fantasies of her magical recovery. After the diagnosis, began the years of more extreme and intractable symptoms, and treatment trials, none of which actually ever provided a cure. Survival dictated my life and trauma became the norm. Pain and fear stealthily invaded and took over body, lodging in my central nervous system.

I witnessed myself through this life-threatening ordeal. I danced with it, trying to keep myself sane and positive, a source of comfort. I didn’t know it at the time, but I became my own experiment as I watched how I rode the waves of discomfort and instability. When Dana was hurting, I learned to focus beyond her pain, rise up, and lift our spirits. I felt all the raw, dirty, dark emotions, the broken fragments of this disruption I could not control, then I had to neutralize my reactions to move forward in hope. This experience became my teacher and the tools I’d developed as a therapist and shaman provided a semblance of stability. Dana and I needed to feel safe as much as we could. 

Seeking answers, trying treatments and failing to get results, understanding what was happening to our lives, was as devastating and traumatic as the illness. Losing friends and our relationship to outside interests, being disconnected from the pulse of “normal life” made its mark on our psyches even as Dana slowly recovered enough to leave home and attend college, some 8 years after the onset of her complex and unrelenting symptoms.

Not long after Dana left, my oldest daughter, Cayla, and I went out for dinner. Our waiter, Bill, arrived at our table to ask what we wanted to drink. I ordered water and Cayla, lemonade. He said he’d be back to take our dinner order. I continued to stare at the spot where he’d been standing until he returned with our drinks. Everything disappeared but Bill. I was fascinated that this young man was asking me what I wanted and then went and got it for me. I understood that was what waiters did, but I’d been so alone and isolated for so many years, that having someone serve me food and drink was almost inconceivable.

I became starkly aware that something had happened to me during the years I’d spent gripped by the immediacy of Dana’s ongoing health crises, imprisoned in my home, breathing every moment to save her life. It was an existence made up of repetitive tasks and monumental acts of will and courage. This moment in the restaurant could have been restorative, but I was in shock. It was a turning point. I realized that life without crisis was unfamiliar to me. I knew I had to recover somehow.

I wrote this article to highlight the trajectory of long-term trauma in the lives of people challenged with caring for those with chronic illness. The emotional load the caregiver carries may go undetected. Feelings of guilt, helplessness, anger, resentment, shame, abandonment, not being good enough, and on and on, are often subordinated in service to being present for the patient. It is only after the caregiver’s services are no longer needed that the trauma surfaces and interferes with the return to “normal life.”

I would like to leave you with these five tips from my experience, to remember during the trauma of illness:

1. Stay emotionally aware and allow yourself to feel.

2. Take 5 minutes to breathe several times a day, long and deep breaths in, pause, then exhale.

3. Do one simple thing of beauty for yourself. Pick a flower, draw a picture, walk or sit in nature.

4. Play your favorite music.

5. Eat something delicious and focus on what is good.

“Dancing In The Narrows” is the story of a single mother’s love and persistence in the face of fear. Anna Penenberg was a dancer, single mother, and therapist dedicated to healing trauma. But when her 16-year-old daughter, Dana, begins showing symptoms of a mysterious illness, Anna becomes engulfed in a trauma more astonishing than she had ever imagined. In search of wellness, mother and daughter must navigate the labyrinthine world of the American medical system and beyond. 

“Dancing in the Narrows” is a touching memoir recounting Anna’s perseverance as she struggles to maintain her relationship with her direly ill daughter. As her condition worsens, mother and daughter embark on a tumultuous journey to find a cure. Full of adventure, laughter, terror, and sheer grit, “Dancing In The Narrows” is a poignant chronicle of Dana and Anna’s multiyear odyssey toward healing.