You are Not a Label that Reads “Survivor”

by Mary Beth CollinsJuly 12, 2019View more posts from Mary Beth Collins

A letter to a teen or young adult in cancer treatment or post treatment from a Mom.

Hello [insert your name here],

I will try to avoid such labels as survivor, warrior, fighter, etc that are commonly used by parents/advocates/friends/the media. You are you, a person, first and foremost.

As I recently read in an article by Hannah D, who had Burkitt lymphoma when she was 8 years old:   We aren’t “cancer people.” Cancer isn’t who you are; today’s labels are a misnomer. Instead of being uplifting they can rob you of your identity, when the cancer already robs you of so much. Cancer is simply biology, and something that hopefully is responding strongly to whatever treatment has been put in place.

In today’s world – a world that loves labels, soundbites and memes – so many people like to provide catchy sayings, catch-all phrases, and inspirational mantra to make themselves feel better. They pass it around much like a joint at a party, everyone feeling just a little bit better without much thought to impact. A simple like, post or share on social media makes people feel like they are supportive. Sometimes it works, and if today is one of those days for you then I hope you stumble upon something that makes you smile, brightens your day, or makes you feel stronger or inspired.

But so often, especially on days that you don’t feel much like a “survivor” or a “warrior,” these messages can feel like a ball of iron chained to a leg, something to be dragged around.  It can often diminish the fragile strength you cling to in order to get through the day, feeling much less than what is expected.  I wish it wasn’t that way for you.

As a parent, I have watched what happen to many treated for cancer or struggling with significant side effects post-treatment.  I have heard my son’s comments over the years, and watched him struggle with such labels, expectations, and the portrayal by the community and the media. And in the end, I think he expresses what so many feel with a simple: “Mom, I wish it all would stop. I just want to be Josh.”  Well, in his case, maybe also the bad-ass musician.

When going for treatment, annual evaluations, or medical specialist appointments for long term side effects, it’s hard to ignore the overwhelming references to patients as superheroes if you are treated at a clinic/facility where they also treat younger children. There are Cape Days, warrior inspirations on the walls, and bins full of masks and capes for patients and survivors at the offices/clinics.  But most patients and survivors don’t feel very much like superheroes.

The treatments are merciless; the months and months of treatment leave bodies and minds exhausted, and years of long-term side effects without meaningful reduction of symptoms result in feeling far less than super-anything. A parent emotionally in need to dress the situation up in fantasy garb cannot successful camouflage the long-term reality for so many teens and young adults. And as a parent, I worry about the pressure this puts on so many. I have seen the undue expectation weighing down my son, guilting him into feeling like a failure as a 17-year old on home/hospital care instead of attending high school because cluster migraines and chemo-induced ADHD made everyday life a nightmare.

The burden isn’t fair for those who simply need to get through the day as best as they can.  Getting through the day is enough. In fact, on the really difficult days, I find it pretty darn super to keep doing just that:  rising every morning, doing the best you can, and hoping it will be one of the good days.

The media likes to portray happy endings and the extremes of life, the more amazing or fairy-tale-like the better. Regularly, articles are published celebrating cancer survivors becoming oncology nurses, oncologists, and researchers … and giving back to the community that helped them all of these years. Recently, I couldn’t help but respond when I saw someone tweet a quote in the cancer survivorship community from Gloria Steinhem: “The final stage of healing is using what happens to you to help other people.” If this is your passion, your calling, or your dream, then reach for the stars and do so proudly.

So many who will benefit from your giving nature will be blessed by your understanding and empathy as well as care. BUT … it is not required. The world does not need you, demand you, nor expect you to give back just because you didn’t die due to the cancer.

The world needs nothing from you.

The world simply hopes that you survive your ordeal and can live a life you enjoy.  What you deserve is to live the life you want to live … that is the entire point of surviving cancer. It is the living that is important.

Media doesn’t find it profitable to write about those who survive cancer who become accountants, regional managers, or administrative assistants. Reporters don’t find it interesting to write articles detailing that some people who survive can only work part time because of pain, cognitive decline, or executive dysfunction. Or that some need to collect social security disability, only being able to volunteer in some productive way because the commitment to a paid position is just too much for a delicate body struggling with a number of physical or neurological issues. The stories about survivors giving back and working in the oncology community are beautiful feel-good stories for the general community; they bring smiles to “everyone.”

You probably don’t find too many articles featuring others in treatment or post-treatment traveling, finishing their college degree, or making music in the garage.  These too are remarkable stories about people surviving cancer and living a life to whatever degree they can. For me personally, I would find those articles amazing and worthy of front page, “above the fold” placement. It is a story worthy of pride.

Healing isn’t about giving back; it is about overcoming what lies in front of you, realizing the life you are able to live, and doing so to the best of your ability.

What is often expressed by family and friends, and often said with great intention to soothe and support is “You have been saved for something special.” This simple phrase plagues the spirit. On the surface it is easy to discredit and dismiss.  I’ve watched many give a simple nod in response, then try to change the topic of conversation. What a sensitive, respectful response to a statement made by someone unaware, yet probably very caring.  There is no barter or indenture for survivorship. It is an unfair statement to make, and more often it is a self-soothing commentary made by people at a loss of what is more appropriate.

Most are simply not equipped with the vocabulary to discuss something so emotional, so intense, so intimate. So instead they reach for the accessible feelgood, hoping the sentiment they are struggling to find has somehow been achieved in one loving phrase.

Unfortunately, once planted in the psyche of a survivor, this festers into guilt and failure for those who don’t believe they have achieved that “something special.”

It reaches far beyond the most basic survivor’s guilt, already at play for most who have watched the passing of many in treatment and are left with the aftertaste of “Why have they died, and not me? Why have I survived instead of them?”

Many times, at two or three am, I have been up with a very emotional, heavily-burdened young man, grappling with his “less than” self-concept, having absolutely no idea how to achieve whatever it is he was “saved to do.” It is heart breaking to watch the struggle, the unfair self-flagellation, and exasperation of a down-spiral in mind, body, and spirit.

But much like with barren land after a wildfire, I hope the whisper “Just living is enough” can sprout seedlings of calm, acceptence and peace at such destitue times. Because the cancer diagnosis isn’t a deserving sentence; there is no evaluative process determining who receives a diagnosis and who doesn’t.  Don’t believe the idea that only “deserving” people survive, and demonstrating worthiness is the charge of post-treatment.

The only person evaluating the quality of your life stares at you in the mirror. And hopefully smiles back at you.

Rather than turning to conventional mantra, I prefer to turn to what has withstood the test of time. Lao Tzu: “Because one believes in oneself, one doesn’t try to convince others. Because one is content with oneself, one doesn’t need others’ approval. Because one accepts oneself, the whole world accepts him or her.”

There are many who don’t need cancer survivors, warriors, superheroes, survivor medical experts or that spiritual reason for surviving. We look at those who endure treatment and survivorship with pride, care and love. Just for who you are and are grateful for where you are today.

Wishing you all the best,

A caring Mom

Mary Beth Collins, author of the blog Survivorship Matters posted on www.cac2.org, is a parent advocate with a son who was diagnosed with neuroblastoma in 1999, and juggles a number of chronic side effects from treatment. For 20 year years she has advocated for childhood cancer issues, focused more recently on issues related to survivorship.

:-)