Editor’s Note: After a long and resilient battle with primary peritoneal cancer, Roberta Aberle, 53, of Auroro, CO passed away on November 1, 2017 with her husband David Oine at her side. Even as she battled her own cancer, Roberta was a tireless advocate for patient care, hoping to improve the lives of others also fighting life-threatening illnesses. She will be greatly missed by all who knew her.
Appearances do matter. Let’s face it. Whether we like to admit it or not.
My appearance has always mattered to me. But cancer takes over your appearance, forcing you face an unknown entity in the mirror. Even with average looks and physique, I was always comfortable in my skin. Until cancer.
I dreaded hair loss as many do, but little did I know there was more to dread.
How I wish someone had told me losing your hair is minor, wait until you lose your eyelashes and eyebrows. Hair aside, the eyes are the gateway to your soul. My eyes without the familiar frame of eyelashes and eyebrows look distant, shallow and colder. I became a face no longer recognizable even to myself.
The injury added to the insult is my body ravaged with scars. Each day brings a new blemish in some unexpected place. Bruises even on the tops of my feet. Aches and pains so deep no topical or pain medication can even touch it. A body that wants to lie in bed all day. I don’t want this to be my body. I don’t know this body.
My scalp feels constantly agitated as hair grows back. Yet, I can’t run my fingers through wavy, soft hair, it’s a mere patchwork of kinky, coarse sprouts of regrowth. I can compensate. I can wear my “hair” aka ‘a wig’. I have scarves, headbands and hats to rival any celebrities accessory closet. But I’ve lost the appearance that used to be uniquely me.
Wigs itch, as do most hats. Scarves are equally obviously just covering the sparseness underneath. All just poor attempts to mask the reality anyway. When in public with any headwear it’s impossible not to be self-conscious. Some days I think, certainly I shouldn’t have to put on this façade. But I do. Day after day.
And why is that? Aren’t we living in a more enlightened period? We’ve moved stigma of cancer beyond whispers and shushing in society to being more vocal and “out” about our disease, haven’t we?
Sadly, not completely. When I was completely bald, I did my own social experiment if you will, I ventured out with the least possible masking of my illness. Just a simple hat. No attempt to conceal my pinkish scalp. No fake bangs or wisps of hair to falsify it. No attempt at false eyelashes or painted on eyebrows. Just me trying to be bold.
Everywhere I went. Eyes averted mine, no one looked me in the eye. The store clerk pleasant enough, kept turned from direct eye contact. Other shoppers browsing, fixated on store racks instead of acknowledging me. I caught a few stares, but when I smiled at them to ease the awkwardness, they just looked away as if caught in some sinful act instead of pure curiosity.
For the first time in the span of an entire day, not a single stranger approached or spoke to me. What an isolating way to go through a day. Was it just me giving off the vibe of unfamiliarity and therefore calling it to me? Who’s to say or know? But it didn’t feel good. Experiment failed.
So, I put my hair back on and join friends who accept me with or without hair. An act that is not about vanity, it’s about identity. Cancer can strip you of the visual aspects that we attribute to vanity. But when cancer not only reflects the disease inside, but projects a spirit uncharacteristic of you to the outside, it becomes about your identity.
In the moments we find to escape our illness; the music can play, the rain can stop for the sun to shine through again, the rainbows can appear. But amid the laughter and smiles, no one has any idea of the burden of sorrow on the mind and soul of those in the cancer experience. They go home at the end of the day, reflect on their worries that while significant are typically not about life or death. We go home at the end of the day and have to study meds to make we’ve stayed on schedule. Feel distress at the new pile of bills and claims owed. Play catch up with the pain or nausea. Then we try to settle into bed and clear our minds of the gravity of the living with a lethal diagnosis.
My hope is that instead of internalizing the slights of strangers, we can find it an interesting study in human behavior. Or the next time we see someone in an obvious state of illness, we can make eye contact, extend a compliment, or project a smile. Don’t let any appearance dissuade you from doing so.
Roberta Aberle is a cancer thriver, despite her 2012 diagnosis with an advanced and aggressive type of cancer. Her cancer; primary peritoneal carcinomatosis, is very rare and lethal, giving her an extremely poor prognosis to live longer than 6 mos. Yet, 5 1/2 years later, she is an active advocate for the cause of cancer as a writer and speaker. Her articles have appeared in Conquer and Coping magazines. Her cancer blog: MyLifeline.org/RobertaAberle and social media site, Live With It on Facebook, in which she shares insights on how life looks from the eyes of cancer, has a following of thousands around the globe. Roberta’s writing appeals to not only those facing cancer or caring for a loved one with cancer; her work contains messages relevant about the need to approach each and every day with appreciation and gratitude whether you live within the fearful confines of cancer or not.