Cancer Narratives: The Danger of Denial
Using scientific research as a springboard for discussion, CKN is distilling this research into practical narratives (click here to learn more about narratives) that will improve the quality of life for patients and offer deeper understanding and connection for physicians. Please join this Doctor-Patient conversation about the Dangers of Denial
by Melinda Marchiano
Walking to my second class of the day, I see a friend across campus and quickly veer to take an alternate route. It’s that time of the day—the time when I’d be dishonest about how well I’m doing, the time where I simply don’t feel well enough to talk to people. I haven’t decided which feels worse, avoiding people I genuinely care about, or saying hello and only drawing more attention to the frustrating fact that I don’t have enough in me to give them what I truly desire to. These moments always seem to be a lose-lose situation. Sometimes, I figure it best to choose the route of total honesty:
“I’m actually not feeling the best, but it’s ok.” To this they often inquire if I’m sick or getting sick, to which my reply is inevitably vague and confusing. “Um, well not really… but kinda.”
Do they know I had cancer? Do I tell them? I have to get to class soon and that might take a while. Plus, it might scare them. Is it even late effects making me sick? Should I see a doctor? I don’t know. I don’t know what’s what anymore—what I just have to “deal with” and what can be helped by a doctor. I most often walk away feeling as though a chaotic flurry of physical distraction hindered true representation of me or my care for them.
I assume that this frequent “non-illness sickness” is common among survivors. It seems that the overbearing physical trauma of one’s past cancer experience must be behind each bout of nausea or extreme fatigue. It’s hard to think otherwise, really, hard to know if those “normal” people walking around you are experiencing and “just dealing with” some of the same things. Maybe you’re a wimp. Maybe you actually are healthy. Maybe this is just life. I lost my gauge of “normal” long ago, months before diagnosis. The onset was slow and deceiving, degrading my memory of what it feels like to experience life through an energized body and mind. I can now only imagine what it’s like to not feel certain ways—to not have the incessant distraction of physical discomfort; to not awake fatigued each day, to not have the anxious voice in my mind saying, “but what if you don’t feel well?”.
Melinda Marchiano Photo Credit: Carlos Guana
Cancer has been my life’s greatest avenue of instruction. It has taught me the power, yet fragility, of the human body and spirit. It has demonstrated that even in tremendous suffering there is abundant beauty, joy, and laughter to be had. It has shown me how to look into the face of great difficulty and step in with a peaceful heart. However, it has also handed me a double-edged sword—it has taught me how to lie. In all of its unique, all-encompassing pain, cancer has taught me the deep intricacies of how to deceive both others and myself. I suppose it originates from denial—coping, a wonderful skill that allows one to maintain sanity amid what the mind would otherwise deem as impossible, terrifying, or simply, “the end”. But after the battle has been won, I believe it takes years of mental “reprogramming” to realize that you no longer have to deny. Instead, you now have the seemingly undeserved luxury of acknowledgment and even, seeking help.
Despite this, it is often easier to go on in a state of denial, to continue the now effortless and almost robotic act of telling yourself and others that everything’s ok, that you feel ok, and that you’re “doing great”. I believe this can lead to a lack of health proactivity among survivors. It is now seven years after I began my battle with cancer, and I am just now considering my lack of acknowledgement and consistent denial of health issues that, whether caused by late effects or not, could potentially be helped. While I do believe a small, healthy dose of denial now and then helps optimists like me to maintain a bit of their sunshine, I am now beginning to see the dangers of carrying the automatic coping skills of cancer forward in my life. However, I believe it is through this recognition of denial, the search for honesty to oneself, and consequent reaching out that we survivors can get help, know exactly what we have to just “deal with”, and reach our optimal quality of life post-cancer.
On December 18th, 2007, at age thirteen, Melinda Marchiano was diagnosed with Hodgkin lymphoma. Two days after Christmas, she began her first of four rounds of chemotherapy, followed by three weeks of daily radiation. When treatment ended, Melinda struggled with post-treatment effects; horrible digestive problems morphed into a life-threatening eating disorder that destroyed her physically, spiritually, and emotionally. During this time of recovery, she began writing her story in spiral notebooks.
In October, 2010, Melinda’s book, Grace: A Child’s Intimate Journey Through Cancer and Recovery, was published. Her powerful book, which received the Benjamin Franklin Award- Bill Fisher Award for Best First Book, and IPPY Award- gives a one-of-a-kind perspective on childhood cancer. It is the real-life stories of childhood cancer survivors that give a face to statistics and spur action among individuals, communities, and our nation’s leaders.
Melinda regularly brings her message of hope to others as an inspirational speaker. During the summer of 2011, Melinda traveled over 7,000 miles, through 28 states, and visited 15 children’s hospitals. She named her trip Children’s Hospitals Hope Tour. The following summer of 2012, Make-A-Wish made Melinda’s wish of visiting children’s hospitals and bringing awareness for childhood cancer come true. This month-long journey, called Melinda’s Make-A-Wish Hope Tour, sought to bring hope and joy to pediatric cancer patients throughout the Western United States. Melinda visited patients, gave presentations at hospitals, and spoke with the media to raise awareness for childhood cancer.
Melinda gives generously of her time– out of her passion to help others fighting cancer. She hosted the influential childhood cancer documentary, The Truth 365, and speaks to help benefit numerous foundations, children’s hospitals, schools, churches, and community groups. Her focus has expanded to include advocating on Capitol Hill for more funding for childhood cancer research. For her tireless work in childhood cancer advocacy, Melinda received the “Hope Award” in 2013 from Arms Wide Open Childhood Cancer Foundation.
Currently a junior at Pepperdine University, Melinda is a Creative Writing major and is deeply involved with the university’s dance company as student director, choreographer, and performer in Dance in Flight: The Film. She is excited about her future plans to continue dancing, writing, and working to end childhood cancer. Melinda’s life mission has just begun…
A Note from Dr. Timothy Walker…
Wow! You have articulated so well in your piece this complex labrynth of feelings and inner struggles, I know to be all too familiar to so many people on the cancer journey. “What do I say to my friends and family when I’m torn up inside with worry that these current symptoms could be a relapse or signs of worsening late effects?” “How much do I say in a casual greeting to a friend while passing them on a busy day?” “Where do I draw the line or find the balance between the kind of healthy denial and stoic tolerance of physical discomfort that helps me to get on with life and the wisdom of seeking help to alleviate the problems that might have easy or even not so easy solutions?”
Awareness of these inner struggles is itself a kind of powerful medicine. Seeing the struggles in oneself, writing about it in a blog, sharing it with others gives voice to something that could otherwise be lost in the shadows of our busy minds. It is so true that denial can easily become a pattern that habitually repeats itself gradually blotting out more and more of our potential for self-empowerment and optimal wellbeing. Awareness, the opposite of denial, is like sunlight dispelling the shadows and will gradually uncover a powerful inner resource. When we humbly acknowledge our creeping denial we uncover innate intuitive wisdom, wisdom into ourselves, our wellbeing and our relationships.
I love your ruthless honesty on this path of self-inquiry and I love your sense of commitment to moving forward “through this recognition of denial”. Whether we acknowledge it or not the challenges of life with cancer, or as in your case life post-cancer, are the grinding stones honing the sharpness of our wisdom blade. In our weekend retreats for people living with cancer and their family members we are often reminded of the famous serenity prayer: “Grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.” Heightened self-awareness in the face of challenges hones our deep intuition that knows the difference. I believe we can all come back to our true heart of wisdom that knows. And we can also be kind to ourselves because sometimes a little denial is an appropriate tack on our forward journey, (like a sailboat heading into the wind) and sometimes a quick “I’m fine” to a passing colleague is a concise condensation of much that is actually true.
Wisdom has to do with being in tune with each situation, each moment as a totally unique arising, and therefore not relying on rules, should-s, musts, have-to-s or any of our old programming. When we can put to rest some of the extra suffering we cause ourselves by trying so hard to align ourselves with some kind of image of who we think we should be, we find that we have in fact always had this clarity of mind and heart. We already have this clarity that can see the difference between opportunities open to empowerment and the proactive ability to make a difference and those situations that are asking for our patient forbearance and acceptance. One man who has had several different cancers over a period of 30 years puts it simply this way. “My body tells me when I need to seek medical treatment and when it is something that I just need to play with until it changes into something else.”
Timothy Walker Ph.D. is a mindfulness teacher and psychotherapist living in Halifax Nova Scotia with over 30 years experience integrating mindfulness into counselling, education and healthcare. He is co-author of the The Healing Circle: integrating science, wisdom and compassion in reclaiming wholeness on the cancer journey and co-founded with Dr Rob Rutledge the Healing and Cancer Foundation. He designed and has taught with Dr. Rutledge the Skills for Healing Weekend Retreats for people living with cancer and their family members 42 times since 1999 in 20 cities across North America touching the lives of more than 1600 people. He has taught at Dalhousie University, Acadia University, and Mount St. Vincent University as well as hundreds of workshops, seminars and retreats Internationally. In his private practice, The Healing Circle, Timothy sees individuals, couples and families and welcomes distant consultations.
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