Synchronicity has a very strange sense of humor. For my second essay in my English Comp class, we were to write a research paper, inspired by a poem. My inspiration turned out to be on the topic of PTSD in parents after childhood cancer/life-threatening illness in your child. Little did I know that while writing and researching the paper, I would have one of my biggest PTSD events, thus far. It has since resulted in a major shift in how I live post-childhood cancer diagnosis and through Gregory’s survival. At least for now. For my own posterity and your personal edification, my essay follows. Also? I received a perfect score. *squee* Please keep in mind that this was for school, not just my blog.
With love, friends. Giant helpings of love.
Not Just for the Military
My reaction to the poem “After Us” by Connie Wanek came as no surprise to me, yet when I shared my impression of the poem, eyebrows were raised at my interpretation. Wanek opens the poem with an epigraph from Swedish poet, Thomas Transtromer: “I don’t know if we’re in the beginning or in the final stage.” I often dwell on this very question. My recent life has taken so many dark twists that never reveal a finite ending or a beginning. Not long ago, the beginnings and endings were clear and well defined. My life was filled with love for my children as they grew and basked in this thing we call living. Wanek’s poem begins with a gentle scene, “Rain is falling through the roof, / And all that prospered under the sun, (1-2)”. There was a time in my life when I felt that my life was prosperous, filled with sunlight and nourished with the falling rain. As in After Us, every aspect of my life was filled with the rhythmic beat of a normal life. “Then a drop of rain fell (19)”. My youngest child was diagnosed with cancer on February 25, 2009. The last four years have been filled with moments of fear too great to adequately convey in black and white words. The moments continue to fall like rain. These rain drops are triggers, drops that nourish the latent fear and anxiety that eagerly waits in anticipation of revival. These tiny remnants of fear and anxiety bloom with a ferocity equal to my first hearing the words, “Your child has cancer.” Take away the rain-filled imagery and I am left with Post Traumatic Stress Disorder (PTSD). As if a cancer diagnosis isn’t enough, PTSD occurs regularly among families who have a loved one diagnosed with a life threatening illness.
PTSD is not just for military personnel. Although, entering ‘PTSD’ into a Google image search and pages of images depicting military personnel amidst suffering will fill your screen, assaulting your heart and mind.. The first indication that this paper was going to be challenging to complete was the limited available information outside the context of military personnel. This did not deter me from finding what was available. My certainty arose from my own personal and frequent experience with PTSD, along with shared emotions within my childhood cancer community. One of the few pediatric cancer specific sources on PTSD offered a glimpse into my reality.
“It has been reported that 68% of mothers and 57% of fathers of children on cancer treatment report cancer-related PTSS within a moderate to severe range , and that 44% of parents of children on treatment report cancerrelated PTSD . A lesser percentage, 6%  to 25% , of parents of children oﬀ treatment report cancer-related PTSD. More mothers (30%) than fathers (12%) demonstrate cancer-related lifetime PTSD .” (Poder, Ljungman, Essen. 430)
These stark numbers came as no great shock to my acutely aware body and mind. Those of us in similar circumstances network with one another to share the burden of our shell-shocked lives. Exchanging story, after story, of PTSD triggers, events and their emotional fall-out. The ‘T’ in PTSD stands for ‘trauma’. Living through your child’s life threatening illness is a trauma that begins at diagnosis, then continues to invade your senses through the months and/or years of treatment. A life threatening illness in your child was only recently added to “the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV) as a qualifying event for post traumatic stress disorder.” (Yalug et al. 27-28). PTSD, as we know it today, has been with us for as long as we have suffered trauma. But it wasn’t until the Vietnam Era that it garnered the attention required for military personnel to obtain therapy and recognition as a mental disorder although then it was referred to as “Post-Vietnam syndrome.” (Satel. 3) There is an eerie similarity between military personnel and parents who have a child diagnosed with cancer: Life threatening. Both of us have looked death in the face, lived to tell about it and survive through its effects.
Even the language we use following a cancer diagnosis, or any life-threatening diagnosis, sounds much like war. Immediately following a cancer diagnosis the ‘fight’ begins. We ‘battle’ with ‘courage’ in an effort to ‘win’ life, versus ‘losing’ through death. Treatment and recovery are often touch-and-go. There are no rule books or sure-fire guarantees in terms of survival or what damage will be left behind if survival occurs. Once the word cancer slips from the doctors lips, all bets are off. The security one had is ripped away in one fell swoop. Everyone buckles down and gets to the work at hand. Destroying cancer before it can destroy the one we love. It is a battle, a war, a scrimmage, a fight. Which even includes all the emotional baggage that comes along for the ride. Once the acute phase of the fight is over and we begin to process what has been happening, the PTSD rears it’s ugly head. The images begin to flash, a need to avoid anything relating to childhood cancer and a hypervigilance that fails to subside. Our bodies continue to believe we are in active war time.
Flashing images. Avoidance. Hypervigilance. These are the “three symptom clusters” (“Post-traumatic Stress Disorder”) that are the diagnostic hallmarks for PTSD. Flashing images are like having a reel-to-reel permanently installed in your mind’s eye. Except the power supply is on the fritz. The tell-tale clacking of the reels can’t be heard all the time. Nor is there a warning when a sudden surge will turn on the projector’s lamp. An image, a sound, a scent. That is the trigger that trips the switch and your entire body is reliving a traumatic moment from the past. This instant movie is also accompanied by a physical reaction. Any combination of a pounding heart, trouble catching your breath or immediate stress sweating. It feels like panic. The avoidance piece of PTSD is what I refer to as ‘checking out’. As a means of self-defense, the body and mind simply do not react at all. Which translates into completely avoiding anything relating to what caused the trauma in the first place. Hypervigilance is where I feel PTSD most acutely. In clinical terms this diagnostic criteria is described as: “hyperarousal, reflected by symptoms such as insomnia, irritability, impaired concentration, hypervigilance and increased startle responses.” (“Post-traumatic Stress Disorder”) Unlike a soldier who has left the battlefield to find himself amidst PTSD, my battlefield is within the body of my child. My battlefield and I live together. My battlefield is the result of love, longing, grace and life.
As I was researching and preparing to write this paper, my battlefield became an active war zone. At least to my mind and body. I experienced one of my hardest PTSD events to date. Taken as a solitary event, it is a minor and manageable health issue. This past week, I learned that Gregory has two extra teeth. They are along for the ride with his top-two front, permanent teeth. While this sounds strange, it is hardly life-threatening, but not to my hypervigilant mind and body. The conversation with his dentist felt exactly as the conversation with Gregory’s oncologist did on February 25, 2009. That reel-to-reel started clacking away, and I was left in the throes of panic, fear and anxiety. Anyone who had not experienced a life-threatening illness with their child would not have had this completely unrealistic response to a minor and manageable health issue. But my experience with Gregory’s cancer diagnosis and treatment provided a fertile ground for a single drop of rain to bloom into moments filled with PTSD triggering events. After acute episodes I often find myself questioning my body’s responses and my relationship with PTSD. I wonder if there is more to my personal experiences that make me more susceptible to experiencing PTSD.
Among the limited amount of research data available, other factors have been shown to influence a parent’s susceptibility to PTSD after their child has been diagnosed with a life threatening disease. “In previous studies, individuals with fewer financial resources were likely to have higher levels of PTSD-like symptoms, as were those with a history of highly stressful life events” (Yalug et al. 36.), which raises the question of whether or not parent’s who experience PTSD are already ripe for the syndrome based on life experiences prior to their child’s diagnosis. While we are not a poverty-stricken family, we do struggle financially to support our family of five. Additionally, my relationship with my husband has been a significant contributory stress, beginning before our son was diagnosed. The only way to clear this question would be to widen the research. However those who do suffer from PTSD, like myself, are too occupied with barely hanging on, simply trying to survive through each day, crossing our fingers that the next event won’t send us into a panic-filled tailspin. Our hypervigilance is focused on our battlefields, the bodies of our precious children, not on the vast expanse of our own minds and emotions. The very minds and emotions that need to be examined in order to sort through the many questions still unanswered concerning PTSD and the parent’s who live with the triad of flashing images, avoidance and hypervigilance.
Hypervigilance is so thoroughly a part of my moment-to-moment living, that nearly everything I encounter has a connection to cancer, trauma or an impending loss of security. Even a slightly overcast sky will indicate to me that a major storm is imminent. The diffuse clouds are hiding heavy, grey rain clouds, fat with the raindrops that will fall, raindrops that will decimate the fragile sense of survival that I cling to. With each potential threat, I question my ability to get through the moment: “…..And after us, / the rain will cease or it will go on falling, / even upon itself” (Wanek. 21-23). Are these extra teeth a normal developmental blip, or are they the raindrop that will turn into a rainstorm and never stop falling? For now, my mind and body cannot discern the difference. It still thinks it is on the battlefield, waging a war.
I may not have sworn an oath to my country or held an assault rifle in my hands, but a war I did rage. A war against death and destruction. A war in which my enemy resides within the body of my child. I am not a member of the United States Military. I am a Momcologist and I suffer from PTSD. Trauma which began the moment I heard the words: ‘Your child has cancer.’ My child is surviving and thriving these days. I am beginning to find my way back to life’s simple pleasures and to recognize the magic in the moments, the images conjured in “After us”, “and of a bowl of eggs, / and lying across the piano / the silver stick of a flute; everything / invented and imagined, / everything whispered and sung,” (Wanek 8-12) My heart, body, mind and soul are aching to revel in the mundane beauty of a bowl of eggs sitting on my kitchen counter.
. “Post-traumatic Stress Disorder.” Encyclopedia of Cognitive Science Hoboken: Wiley,(2005). Credo Reference. 2 Feb. 2010. Web. 24 Apr. 2013
Pöder, Ulrika, Gustaf Ljungman, and Louise von Essen. “Posttraumatic Stress Disorder Among Parents Of Children On Cancer Treatment: A Longitudinal Study.” Psycho-Oncology 17.5 (2008): 430-437. Academic Search Complete. Web. 16 May 2013.
Satel, Sally. “PTSD’s diagnostic trap.” Policy Review 165 (2011): 41+. Opposing Viewpoints in Context. Web. 24 Apr. 2013.
Wanek, Connie. “After Us”. Poetry 180: A Turning Back to Poetry. Ed. Billy Collins.
New York: Random House, 2003. 85. Print
Yalung, Irem, et al. “Posttraumatic Stress Disorder And Risk Factors In Parents Of Children With A Cancer Diagnosis.” Pediatric Hematology & Oncology 25.1 (2008): 27-38. Academic Search Complete. Web. 16 Apr. 2013.