From Now to Then and Back Again
My husband Ed and I had dinner a few Saturday nights ago with four of his old friends from the Weequahic section of Newark: as a Connecticut Yankee, I was the outlier of the bunch. Their reminiscences about the Newark neighborhoods always seemed to go on forever and usually embraced the same stories. And always, their relentless recall prompts me to interrupt with a wisecrack immediately followed by the rolling of my eyes and an exasperated look my way from Ed. Nevertheless, I love them and they love me.
Geographic differences aside, though, the women and I had lots in common and so we usually sat huddled together at one end of the table and discussed education, literature, and children with special needs – much more interesting than the men’s stuff about sports and politics.
The diversity of our topics that night eventually led to a question asked by one of the women: “As a society,” she said, “have we become too open in our conversations around children, particularly when it comes to specific childhood disorders?” I answered that I believed it was better than hiding the problem. Still, my response was tentative.
I reminded them that when our younger daughter Valerie was diagnosed in 1970 with bone cancer, the nature of her illness was kept not only from Valerie and her older sister Stacy but from many family members and friends as well. Our fears were that someone would talk in front of the children about the threatening qualities of cancer, and so we told people that Val had a bone infection. Although I’m sure her connection to cancer was bandied about, those who did so were circumspect. And to my knowledge, the word cancer in relation to Valerie was never used in front of our girls.
I didn’t analyze the silence surrounding Valerie’s illness when we were a young family. Not then. Our silence was simply an uneasy but apparently necessary fact of life.
We lost Val in January 1976. Shortly after that, Stacy and I were sitting in the den talking about school. It was quiet in the house and I thought it was a good time to talk to her about her sister, her hospitalizations, and the many times Ed and I spent away from home: in other words, to add some more information about Val’s bout with cancer if that was what Stacy wanted. “Stacy, hon,” I said, “I’m sorry that we never told you about Valerie’s cancer. It must have been very hard on you, all those years, wondering what it was that made her so sick.” I laid my hand on hers but before I could continue speaking, she pulled away and cried out, “Oh, no, Mommy! No, I would never have wanted to know that when Val was sick.” The horrified look on her face told it all. Should have just kept quiet, Sue. Remember? Tell children only what they want to hear. But how do you know what that is?
With that brief conversation, I had wrongly gauged my child’s emotional needs and increased my long-held confusion about secrecy versus honesty. All in one fell swoop.
In February 1976, when Ed and I established The Valerie Fund1 in Val’s memory – the organization supports hospital-based medical centers for children with cancer and blood disorders – the word cancer had defiantly become the most common word issued from our mouths. All the same, my hesitation in giving a resounding yes to society’s current openness puzzled me. And so I told a story hoping that it would address my friend’s question as well as my doubts. It’s a story that I’ve told many times and one that continues to astonish me.
I’m walking down the narrow hallway of The Valerie Fund Children’s Center for Cancer and Blood Disorders; located at Overlook Hospital in Summit, it is our first Center. My mind is elsewhere. I do that when I can; it’s easier. A young woman startles me by reaching out from an open doorway. She grabs my arm. Smiling, she pulls me into a small Valerie Fund examining room and introduces me to her seven-year-old son who is on the floor playing with a toy truck. He makes chugchugchuging noises in his throat – his version of what a motor sounds like. We shake hands, that little bald-headed boy and I, and then he turns back to his truck. I grin. He’s cute.
His mother and I chat for a few minutes and then she begins to tell me about her son’s Lymphoma and his treatment at The Valerie Fund’s Overlook Center. Every now and then, from his seat on the floor, the little boy looks up at us but appears disinterested in our conversation; he has heard it before. Finally, his mom says, “I’m sorry that you didn’t have a Valerie Fund Center to go to when your daughter was ill. You needed it then as I do now.” I nod my head, not quite knowing what to say. We hug each other. I bend down to give her son a kiss good-by and I leave.
Back in the hallway, that mother’s comment about our need for a Valerie Fund Center when Val was sick provoked a delayed but earnest Yes indeed! from me. The memory that stands out the most, however, was the shock I felt when she spoke in front of her son about his illness. For hours afterwards, I obsessed about him and the concept of openness.
And then it disappeared from my mind’s eye. Satisfaction that the organization was working as we had envisioned it pushed all other issues away. Her son was being treated with the best that pediatric oncology had to offer right here in New Jersey with a minimum of family disruption. That was more than enough for me.
Time passed. Ed and I kept busy growing The Valerie Fund. We talked to groups about our daughter Valerie, her illness, the emergency trips into New York, the time spent away from our older daughter, and family disruptions. Both of us had become candid but the openness factor as an issue never came up.
More time passed. Our daughter Stacy matured into a beautiful, loving young woman, and at twenty-five, two years into her marriage, she was diagnosed with breast cancer. We talked about her illness with her then, of course. No more secrets. But again, we did not discuss the silence that Ed and I insisted upon when Val was ill. I thought about the impact of that silence – the lies it generated, the worry that someone might say something in front of Val or Stacy – but had not had a clear alternate plan to help our family through that period. Too late now. That was then. Social behavior had naturally changed with the years, hadn’t it?
We lost Stacy to breast cancer when she was thirty-seven. And we talked about her, her doctors, her hospitalizations, the fact of her disease’s early onset, and whatever other topics arose about our daughter‘s life and her illness. But about our silence all those years ago? Only on rare occasions, and always, for me, with that small sense of discomfort.
Most recently, I attended a Mom2Mom2, 3training session at UMDNJ’s University Behavioral HealthCare.4 A young mother sat next to me. Her son Nicholas was diagnosed at five with Acute Lymphoblastic Leukemia and was treated at The Valerie Fund Children’s Center at Morristown Medical Center. Amy, Nicholas’s vibrant and exciting mom, talked about him. She said,
One year into his illness, when he was six, Nicholas asked me how to spell stinks. On a piece of drawing paper and crayon, he spelled out the word c a n c e r – he knew how to spell that! – and crayoned next to it the word as I spelled it for him: s t i n k s. Nicholas then drew a flower beside the two words. Imagine! Those words, cancer stinks, next to a flower. How ironic is that?
Amy’s face lit from within as she talked about Nicholas.
Now see for yourself what else is happening with Nicholas. Look at his website – he is eight years old and CEO and President of Cancer-Stinks.4 His younger brother Ryan is Vice President and Mom Amy is the worker bee. Read what they have done to show other children and their families how to deal with illness. Understand what it says to all of us about resilience, and hope, and openness.
Isn’t that another astonishing story?
Today, a diagnosis of cancer, for children and adults alike, remains serious and is frightening but, in general, along with many other disorders, it is no longer sequestered in the closet. Although our daughter Stacy may not have been ready for openness as an eleven-year-old in 1976, it was Ed and I who initially closed that door. She just followed in our footsteps. Nonetheless, with time, we all did grow.
And without any hesitation, I have an answer for my friend.
Yes. I believe openness is good if sensitively handled and in an age-appropriate way. It enables reflection, it provides the opportunity for questions, and it allows for expression.
No more secrets. No more silence. No more fears that there might be a slip of the tongue or that the children might hear something that would frighten them without a chance for well-defined discussion. Openness is what I had been looking for as an alternative to our silence but I had been unable to see its outcome until Amy and Nicholas held open the door.
Openness may not have been for our family in 1970 and it may not be for everyone today. Yet I can’t help thinking: for those who practice it, openness must feel more comfortable than silence.
3. www.ubhc.umdnj.edu University Behavioral HealthCare at the University of Medicine and Dentistry of New Jersey
4. www.unexpectedlives.com. Read my 3/1/2011 post, Special-Needs Moms;
Suzann B. Goldstein lives with her husband Ed and a tree named Buster, (Read about a dog named Buster; 12/1/2010 post, A Half-baked Story About a Crazy Dog and a Nutty Squirrel; Source: www.unexpectedlives.com). Sue is co-founder of The Valerie Fund, has her Master of Arts degree in medical sociology from Rutgers University in New Jersey, is a freelance writer and a poet, and has just recently completed her memoir, Unexpected Lives.
Editor: Edwin C. Goldstein