Love in the Time of Brain Tumors
"What's wrong is that I've died...the old me is dead."
Posted Feb 09, 2010
An artist, Rosemary Covey, had set up a lunch date to introduce me to Sandra Wyatt, a brain tumor patient whose story impressed her deeply. "There's just something about her," she told me. "I think you'll see it." The fact is I did not. At least not right away.
Instead, when I walked into the Torpedo Factory Art Center that day, I saw the artist coming towards me accompanied by an attractive, self-assured woman--impeccably dressed and carrying a briefcase--and I felt disappointed. I assumed the meeting with the interesting brain tumor survivor had been canceled. According to Rosemary's briefing,in 2002 Sandra had endured an operation to remove 12 out of 15 meningioma (non-cancerous) brain tumors. She was in her early fifties and walking around with three remaining brain tumors that at any time could grow larger and literally strangle her brain.
Given these background facts, I never assumed she'd look as polished and put together as this professional woman walking with Rosemary. But then, "This is Sandra," Rosemary introduced and Sandra's firm handshake met mine. I hoped my surprise didn't register outwardly.
Over coffee, Sandra easily warmed to telling her story about how deceiving looks can be. In 2002 after her brain tumor operation, doctors,thrilled by Sandra's model beautiful appearance, testimony to "their" success, assured Sandra she was as "good as new." Later she would learn that "they say this to all the brain tumor patients." What they meant, Sandra came to realize, her voice growing strong with anger as she told us, is "you'll be good as before, new as before, unchanged."
Sandra tried to believe the doctors. But two years after her operation, this formerly tough woman who had raised five kids singly for ten years while working as a paralegal, found herself still weeping or sleeping at the drop of a hat, unable to work because of paralyzing seizures, unable to balance her checkbook or cook for her family--jobs her youngest daughter, Brittaney from ages 13.5-16, took over. To this day, Sandra calls her purse her "brain" because it carries her calculator, tape recorder, and notepad, all the tools she needs to compensate for loss of short term memory. Still, for two years after her operation, Sandra kept believing she SHOULD be able to get back to normal--hadn't the doctors told her so?; she saw the differences between herself before and after the operation as personal weaknesses.
Sandra's family did as well. One day, her middle daughter, Heather, who had barely spoken to her for two years--since the operation--called Sandra to reveal why. Sandra recalls her saying, "I can't deal with you the way you are now. You're not the same. You're clingy and too emotional. You used to take care of us. Now all you want is to depend on us." Sandra called her older daughter to confirm that this was true. If delivered in a gentler tone, she got the same response.
"Good as new, right," mused Sandra over coffee with me and Rosemary. An edge crept into her voice. "Now I know you come through brain surgery literally new, not back to the you you were before. It's the same for everyone I've talked to. Why can't they tell us this?"
On the morning of her daughter's confrontational phone call, however, Sandra blamed herself. She was supposed to meet her fiance at church, but she couldn't drag herself off the couch. When Greg called to find out what was wrong, she told him,
"What's wrong is that I've died. I went into brain surgery one person. And now I'm another. The old me is dead."
Greg was quiet for a minute, as if thinking, "how to put it?" Then he admitted that unlike Sandra's daughters, he didn't really care if Sandra wasn't the same. How could he? He'd never known Sandra before her brain surgery. They'd met on match.com in the months following surgery when Sandra was unable to do much else but surf the net. And, since then, if truth be told, the glimpses Greg had seen of the "old" Sandra--the bossy, in-charge, high-powered paralegal, he hadn't liked so much. Rather, Greg was in love with the tenderhearted Sandra, a woman who cries easily, a passionate person with a cause to raise brain cancer awareness, a woman of steely faith.
"Besides, you never would have noticed me before," Greg likes to joke. Sandra has to agree. Greg, an engineer is "unassuming," she says, despite striking blue eyes. "Probably not my former type."
Greg's words were a turning point for Sandra who learned a lesson many of us would do well to learn. Instead of wasting any more time berating herself or apologizing for not being good as her old self, Sandra began the rewarding work of accepting her literally new self. In 2004, she married the kind man who loved her for who she was now. Her self-acceptance taught her children to accept that the best part of her, her love for them and for others, had not only survived surgery, it had deepened in its aftermath.
A central if odd fact of Sandra and Greg's marriage continues to be that they don't love each other despite Sandra's frontal lobe brain damage. They love each other because of it.
"Sandra and Greg"
In the Summer of 2007, Sandra and Greg spent their honeymoon touring brain tumor conferences across the country. Sandra realized there was no support group in her area--Eastern Shore, Maryland--for survivors of brain surgery and that other survivors like herself, along with their families, might find themselves lacking the honest information necessary to deal with the emotional and cognitive symptoms of brain trauma. In November 2007, Sandra contacted a lawyer friend who helped her start the nonprofit, Hope with Support. In her work for Hope for Support, Sandra's on-the-surface emotions translate as passion and make her a compelling speaker, a new-found skill. "I never had anything to speak about before," observes Sandra.
None of these changes or accomplishments came easily. And her self-acceptance, an ongoing process, will never be definitive.
After coffee, Sandra and I followed Rosemary back to her studio where the artist began photographing the brain tumor patient for a series of prints she planned to do for an upcoming exhibit on the theme of "confronting reality" for the Smith Farm Healing Arts Center in Washington, DC.
"You're so beautiful, I almost feel bad. You know the prints won't be beautiful in the normal sense," said Rosemary whose wood engraving portraits distort appearances and flaws to expose vulnerabilities. At this, Sandra allowed her sadness and resolution to show in her eyes. "It's okay," she said as she parted her hair to reveal the wide scar where it won't grow back, then fingered the divets left by the frame used to cradle her head during brain surgery.
As I watched her, the word "shorn" came to my mind. Gently, Sandra cupped her hand over an indent on the side of her face, also a result of the operation. And then she waited for the camera and the artist's gaze behind it to find and expose her.
After the sitting, Sandra told me and Rosemary that she knew the prints wouldn't be flattering but that she hoped by being honest she could help others do the same. Sandra hadn't experienced "reinvention" of the seductive, superficial sort touted in advertisements or women's magazines (including those I read.) In fact she had always been beautiful and youthful-looking, that much hadn't changed. She had been literally reincarnated, rent and reconstituted from the inside out. The price of her new life seemed to be acknowledging, even embracing the sadness and fear as she let go of her old.
Sandra's story--while unique--speaks to anyone who has ever dreamed that with the right combination of genes, exercise, diet, cremes, or surgery, we might turn back to the clock, be "as good as new" or rather "as good as young." The truth is that not one of goes back. And in beating ourselves up for not being who we were, we might miss the love and joy we can experience by being who we are.
"Hope with Support"
These days, Sandra who works full time and is an activist for Hope with Support misses as little as she can. She plans to attend the National Brain Tumor Society Conference in Washington DC, March 19-20 2010. "Being with other survivors gives me Hope, and also allows me to be an inspiration to new survivors."