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To Live, Die or Advocate: A Mother's Choice

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What is a mother to do when she first hears that her healthy, funny, bright, charismatic daughter has been diagnosed with cancer at age 23? Stand by her side, of course. That's a no-brainer. However, what is a mother to do when that same daughter dies at age 26? What was I to do, faced with my daughter Sara's light snuffed out, her breath shut off, her face shrunken to skin and bone, body wasted thin... her once full lips barely able to wrap around her wide, vivacious grin? I couldn't stop it from happening. I couldn't save her. As her mother I was supposed to keep her safe forever, but I didn't... I couldn't. What was I supposed to do with that?

I had a choice: I could choose to die with her, right then, by allowing myself to explode into a zillion little pieces, losing my sense of self forever, or I could stumble through the dark fog until I found a way to "live" without her; to breathe again and stay standing.

Sara felt that she had a choice, too: to die quietly, unknown except to her loved ones; or take the time she had on this planet and advocate for other young adults like her. From the day Sara was born (Valentine's Day, 1974), she was focused, articulate and demanding. Getting cancer didn't change that, so it came as no surprise to anyone who knew her when, on the day that she found out about her diagnosis, Sara turned to me and said: "I wanted to make a difference in my life; how am I going to do that if I die young?" Barely a minute had passed before she suggested she "could answer phones on the Variety Club Telethon and help BC's Sick Kids."

The date of the Telethon that year was February 14th, Valentine's Day, 1998 -- Sara's birthday. Perfect! As it turned out, Sara, an emerging actor/singer, was asked to be one of the on-air hosts of the Telethon. This set in motion a chain of events that led to the production of a documentary film about Sara and her journey. "Sara's Story" was broadcast across Canada on Global TV, Vision TV, the Knowledge Network and Women's Network.

Out of that first film came a second documentary called Chasing Rainbows: Young Adults Living With Cancer. This film addressed the important issues that young adults face when living with cancer: isolation, infertility, sexuality, family relationships, fear, faith, hope and the future. It provided exactly the information Sara had wanted to have when she was first diagnosed. She asked me to produce this film, and to be sure to "distribute it throughout BC, across Canada, the USA, and if you have the time Mom, Europe." Sara desperately wanted to eradicate the word "isolation" from the young adult cancer experience; she never wanted another young adult with cancer to feel as alone as she had. I had to keep living to fulfill her dream.

When she died on July 17, 2000, it was my turn to choose. So, I chose to live by committing my heart and soul to young adult cancer awareness advocacy. I spent the next decade producing and distributing Sara's Story and Chasing Rainbows: Young Adults Living With Cancer. In 2007, with the help of the BC Cancer Foundation and BC Cancer Agency, I was able to press 3,000 copies of Chasing Rainbows and distribute it throughout BC. In subsequent years, I toured the film across Canada, and even fulfilled Sara's dream of making it to Hollywood, when the film was screened at a film festival in Los Angeles.

Through contacts I have made in the young adult cancer community, it has also been shown in Mumbai (India) and the United Kingdom, and I have received requests for screenings in Italy, the Netherlands and Australia. French- and Spanish-language versions are available; translations into Chinese, Arabic, Malay, Hindi, Portuguese and Italian are in progress. I am grateful to so many wonderful people in the cancer community for directing me to one contact after another, so I could meet Sara's goal. I have also been lucky to have many amazing young adult survivors join me in presenting the film wherever it is screened, speaking up and adding their own voices and perspectives to the conversation.

Last year, just as I began to wonder if my work for Sara was coming to a close, young adult cancer survivor Mike Lang approached me for help in promoting a film project. He had seen Chasing Rainbows during his treatment for Hodgkin's Lymphoma in Calgary, and was inspired to make a film of his own, Wrong Way to Hope. We pooled our contacts and resources, and produced a successful cross-Canada screening tour in Spring 2011. We also showcased Wrong Way to Hope and Mike's second film, Ebb and Flow, at the LiveSTRONG Young Adult Alliance Conference in November 2011, and will be presenting together again at the Canadian Association of Psycho-Oncology (CAPO)'s annual conference in April 2012. I have no doubt that Sara has had a hand in all of this.

My advocacy work has given Sara a voice for the past decade and more. It has kept her alive for, and with me. Together, "we" have offered support resources to young adult survivors, their family, friends and the medical staff who care for them. We have held screening /discussion events at cancer agencies, cancer conferences, hospitals and wellness centres around the world. Over the course of the past twelve years, advocacy for young adults with cancer has grown into a movement with serious momentum, and in retrospect I can see that Sara was a pioneer in it, along with many other amazing, creative, driven young adults like Geoff Eaton (Young Adult Cancer Canada); Matthew Zachary (I'm Too Young For This! Cancer Foundation and StupidCancer.com; Jonny Imerman (Imerman's Angels); Peter Wilkinson (www.jimmyteens.tv), and more.

Even after death, a voice can be heard, if someone is willing to keep it alive. That was my job. Wasn't it? Now it is March 2012 and I finally feel that I have met Sara's goal. Of course, there are all kinds of advocacy work still to be done! Young adult cancer patients still need support and resources, and a greater public awareness of the unique challenges that they face. But I have done what my daughter asked me to do. Her work is finished. So, now, again, I ask myself, what is a mother to do? I must choose again: live, die, continue to advocate for young adults with cancer, do something entirely new and different?

I thought I had chosen life 12 years ago, but recently I have begun to realize something: in spite of getting up every morning, breathing, laughing, crying and living with purpose through all that time, a huge part of me did die the day Sara took her last breath, and it is just now that I am beginning to "live" again. I have stepped off the treadmill, exhausted, weary in my soul and heart, tired of 'faking' it for others, for myself. It feels good. I know that Sara knows that by my choices, I have honoured her and our lifetime together, forever and beyond.

I couldn't change Sara's outcome, only my own. I could not let Sara's cancer claim one more life that day. I chose to live. And, that's what this mother had to do.

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