“Hiding your core feelings takes an enormous amount of energy, it saps your motivation to pursue worthwhile goals, and it leaves you feeling bored and shut down.”
The Body Keeps the Score ~Bessel Van der Kolk, MD
By way of background for those who likely don’t know my story, I was diagnosed and successfully treated for Ewing’s sarcoma, a soft tissue cancer, when I was 8-years-old in 1978. My treatment involved multi-agent chemotherapy, including doxorubicin, and high dose chest radiation. Sadly, the very treatment that cured me led to heart failure requiring heart transplant when I was 38-years-old.
Facing a life-threatening, late-onset toxicity like heart failure as a young wife [and] the mom of a 4-year-old was terrifying at the core of my being. Heart failure ravaged my body [and] my soul was hard-pressed. When it was all said [and] done, I was a 5′ tall, 66-pound weakling who couldn’t sit, stand, walk, or run. It was a year & 1/2 before I began to gain weight, before I could walk on uneven surfaces, before I could pick up, twirl our son.
My physical recovery demanded a singular focus, a focus that did not allow for emotional recovery. By the time my emotions caught up to me, almost everyone in my life had processed and moved on because life kept moving even though mine was standing still.
It was at this point that I made a critical error; I hid my core feelings becoming a willing participant in the perpetuation of a false narrative, a narrative that painted me as strong and resilient when in fact I was sapped, lacking all motivation, grieving, depressed, and a shell of the person I once knew. You see, I wanted to be strong and resilient; I wanted to brave the storm no worse for the wear; I wanted this to be the story, the reality in those moments.
“One system creates a story for public consumption, and if we tell that story often enough, we are likely to start believing that it contains the whole truth. But the other system registers a different truth: how we experience the situation deep inside. It is this second system that needs to be accessed, befriended, and reconciled.”
~Bessel Van der Kolk, MD
And so, I went with it until I could do so no more.
In October 2010, I found myself completely undone as I laid my head in Dr. Pepper’s lap and wept. I remember distinctly saying to Dr. Pepper that day, “I’m tired of acting like I’m okay because I want to be okay and so that everyone else can be okay, but I am not okay”.
(Forgive the use of okay 4 times in one sentence which must be a world record or a throwback to the 80’s)
She took my hands in hers saying, “Stephanie, you’ve been traumatized: first as a child diagnosed with cancer, then as a young wife, mom with heart failure, your heart died, and you carry the heart of someone who lost their life; it is overwhelming you”.
Everything about the way she delivered that message was loving, compassionate, sincere [and] let me tell you that encounter was providential. As I leaned into her words, I realized that there was healing work at the soul level to be done under the guidance of one well versed in trauma work, trauma recovery and the medical management of depression, low-grade generalized anxiety, panic, and mood lability.
So, she referred me to my most excellent psychiatrist, counselor and sounding board to begin the process of healing, the process of reclaiming not only my sense of wholeness but also my family, my life. Once my depression and anxiety had been alleviated with medication, I was ready, ready to approach, to access the trauma surrounding my heart failure.
I believe definitions and precise descriptions are important likely because I was a nurse practitioner prior to my heart failure not to mention I am a lover of words.
When I speak of trauma, I am speaking to the emotional shock that accompanies a deeply distressing experience characterized by memories that intrude upon your present moments, the reliving of the event, avoidance of reminders whether people, places, or sounds, feelings of detachment/numbness, hypervigilance, mood instability, and overwhelming guilt.
Every heart failure and transplant story is as unique as the individuals affected, donor and recipient families.
Consider with me: frequent hospitalizations, adult supervision 24/7, crawling upstairs to conserve energy, ineligible for transplant, life flights, single parenthood, a heart, broken and beyond repair, final goodbyes, medically induced comas, the death of a beautiful, vibrant 17-year-young lady with a bright, bright future, an angelic voice, [and] a heart for children, a family unknown to us who said yes amidst catastrophic loss, unspeakable grief, a heart-gifted to me, survivor’s grief and guilt, gratitude, and life; all are a part of my, our heart failure, transplant experience.
“Silence about trauma also leads to death–the death of the soul.”
~Bessel Van der Kolk, MD
I am giving voice to the trauma of my heart failure as a matter of healing within my own heart-soul and in the hope of bringing light to someone else’s darkness. Today, I am strong and I am Velveteen rabbit REAL, the kind of ‘real’ that you become; a process that is painful, but worth it; a process that can not be undone; a process made possible by the generosity of grief-stricken strangers.
Giving voice to trauma is intimidating, yet ultimately freeing; remaining silent is bondage.
I highly recommend The Body Keeps the Score by Bessel Van der Kolk, MD as a phenomenal trauma resource.
The Velveteen Rabbit by Marjory Williams [and] William Nicholson
For more information on Post Traumatic Stress Disorder, click here.