What the cancer-survivor narrative gets wrong

The language of a cancer survivor's narrative might unintentionally come across as offensive for the families of those whose family or friends didn't survive. One small adjustment to the narrative can change that.

 

I recently participated in the Avon Walk for Breast Cancer in Chicago.  It was a weekend full of tears, laughter and sore muscles from walking 39.3 miles to raise money for breast cancer research, treatment and education.

During the closing ceremonies, we celebrated survivors, and I was right there, cheering with hundreds, thousands of others, for the survivors as they entered.  My heart filled with happiness for them.  And a pang of jealousy.  I wish my mother could have been one of them.

My mom passed away from what doctors presumed was breast cancer on May 6, 2012.

Today is June 10, 2014.  My mother would have been 59 years old today. 

As I stood in the sea of light pink t-shirts, pom-poms and crazy wigs, I cheered as giant checks (literally -- the checks were about as big as a person) of $100,000 dollars and above were presented to various cancer research institutes in the Chicagoland area.  

It brought tears to my eyes because I'm hopeful for the future.  I hope we are able to find a cure some day. 

But there was something in the closing ceremonies that really, really bothered me.  

As we all listened to one survivor's story -- it is a remarkable one and I wanted to give her a huge hug and to let her know that I hope things continue to go well for her -- I felt a bit of frustration bubbling up, frustration with what the language of her narrative implied for all of those who haven't survived.

It's the kind of language I've heard many other survivors use.  

It's something like, "I decided that I was going to survive.  I made up my mind that death wasn't an option.  I got through on sheer willpower."

And please, please don't get me wrong.  I think attitude is such an important part of facing any difficult obstacle, especially when it comes to facing something like cancer.  But, when it comes to cancer, attitude isn't everything.  It's simply not. 

Sometimes, you can 'make up your mind' that you're going to survive.  You can work as hard as you possibly can to fight the deadly growths invading the inside of your body.  You might go through treatments for years, like my Mom did.  And you might say and believe that death isn't an option.  You'll outwork it.  You'll pray for healing.  You'll keep a positive attitude.  You'll dip into the power that is in the human will to survive.  But guess what?  Not everyone, even with an attitude like that, even with a strong faith, is going to survive.

My mom's death was not the result of her not wanting it badly enough.  It was not the result of her not finding or having the will to survive.  She faced her cancer with courage, strength and grace.  She fought it.  She worked hard to prevent it from spreading.  I was often brought to tears by her optimism and her ability to keep on smiling.

And even though I understand that the speaker was not, in any way, intending to suggest that any person who has died from cancer didn't have enough willpower, it still felt like that was the implication, somehow.

My mom wanted to be here to see her three children grow up.  She wanted to watch her youngest son graduate from high school, her daughter graduate from college, her eldest son purchase his first house.  She wanted to grow old with her husband.  

She wanted to celebrate all of the milestones that a 56 year-old would normally have to look forward to.  She wanted to be a grandmother. 

Her death had nothing to do with willpower.   She didn't choose to die.

I completely understand what people mean when they say something like, "When I was diagnosed, I decided right then and there that I was going to survive."  They're trying to articulate just how much work it took to stay positive, to keep fighting.  I'm not angry with those who have used this narrative.  I'm really not.  I understand the intent.  

But a nod to the lack of complete control over a cancer patient's ultimate outcome, despite willpower, despite attitude, despite everything, can easily change how a survivor's narrative impacts others.  It can make that narrative stronger.  It can bring us all closer together.

"I tried my best to keep a positive attitude.  I worked, day in and day out, to fight cancer.  And I've been one of the lucky ones who has survived."  Something like that.  It demonstrates an understanding that cancer is not completely in our control.  It leaves room for the families of those who didn't survive to celebrate your survival without feeling like you think their loved one should have worked harder or that they should have had a stronger will to survive.

My heart swells for each and every cancer survivor out there.  I have seen how tough the road through treatment can be.  To get through something like cancer is something worth shouting about from the rooftops.  I just hope we can begin to shift the language of the survivor narrative to be considerate of how powerfully the language of a survivor's narrative can impact the families of those who were not quite as lucky.