Why did you title the book, "Be the Noodle"? Here's the story:
Chapter One: Swimming too far out
My mother and I are sitting on a stretcher in the basement hallway of Mass General Hospital. Our winter coats are piled in a heap next to us. It’s 12:30 in the morning, dark and frigid outside, but in the bowels of this giant Boston hospital it is bright, hot and chaotic.
The fluorescent overhead lights are loud, making a buzzing sound like those annoying bug zappers you hear in the summer. The woman on the gurney across the hall is telling the emergency room physician that she has no friends or family in the United States. Just her boyfriend, who earlier in the day broke her neck and nose. Next to us an elderly woman with gnarly hands and green eyes moans alone.
A camera crew from ABC-TV is dodging the incoming patients, looking for people to interview for a documentary on urban hospitals.
“How about us,” asks my mother Bette, as in Bette Davis. “We’ve got a good story now.” They ignore us, two middle-class, nicely dressed women laughing and talking amid so much human drama.
Ninety minutes ago the doctors told Bette that the headaches and vision problems she’s been having are cancer. In fact, her head is loaded with malignant tumors. Not one, not two, but many. Next stop: the neuro-oncology ward for more questions, more tests, more experts. The only certain thing is that Bette’s long-term prognosis is not good.
As we sit waiting for a hospital room to open up Bette turns to me and says, “We can do this. It won’t be easy but we can. I know we can.”
Bette has decided that she doesn’t want to spend the rest of her life in hospitals or being sick any more than is likely to eventually happen.
“I’ll be open to what the specialists have to say tomorrow,” she says. “But what I really want is to go home and live at my little house and walk the beach as much as I can. I don’t want to live the rest of my life sick from treatments to prolong my life for who knows how long. I know you all will help me do this.”
In this case “do,” meant that Bette would do everything in her power to help us help her. But no hospitals. No live-in medical help. No extraordinary measures. Just living at home as comfortably as possible, cared for by family instead of medical clinicians. (This was not the time to tell her I couldn’t even help my son when he got sick to his stomach; how the heck was I going to be able to do this cancer thing?)
I believed Bette that early morning in the hospital basement as I have always believed my mother when she was convinced something was possible. It was a pattern of our lives.
Bette’s belief that “we can do this” was like her unwavering belief that if you know how to swim you’ll be fine even when you swim too far out and the current starts pulling.
My father would sit on the beach worrying as Bette swam out into the ocean. What if she got a cramp? Got caught in a strong current? Who could save her then?
“Why can’t she stay closer in or use one of those swimming noodles like other people who go far out,” he’d ask us as we watched Bette swim further and further out to the horizon.
My father was referring to those Styrofoam swimming noodles that you see littered all over the beach in hard-to-miss fluorescent green, yellow and purple colors. Those Styrofoam swimming noodles don’t look sturdy or safe, but they give you a weird kind of support even though you still have use your arms and legs.
Bette paid her husband no attention, believing in her soul that there was nothing to worry about when you’re swimming. Worse case you turn over and float on your back, letting the buoyancy and goodness of the salt water guide you back to shore. You don’t need silly little children’s noodles to help you swim, especially in the ocean.
But Bette, so independent and headstrong throughout her life, already knew that this final stage would not be an easy swim. Cancer currents are filled with rip tides, sandbars, the occasional shark, and way too many jellyfish lurking in the seaweed. She would have to hold on to a noodle. And that noodle would be her family and friends, helping her stay buoyant despite unpredictable currents, pulling her to safety when she could no longer paddle.
My father really believed that Bette would die from swimming too far out by herself. Not from cancer. He would have been surprised to learn that Bette finally agreed to hold on to a noodle.
caregiver lesson #1: be the noodle
