A few years ago, an old friend of mine was cleaning out a drawer in her apartment down in Florida, found a phone number scribbled on a slip of notebook paper, and called it to find out to whom it belonged. (This is pre-Facebook era.)
It was my phone number. We hadn’t spoken in years. So we talked for a little while, though neither of us had been expecting — or was ready for — the kind of conversation that Trida and I would immediately fall into. We’d known each other very well — under difficult circumstances — but then drifted apart due to distance and time.
You see, we were roommates at Childrens Hospital Boston for a few months in 2001-2002. She was a young mother in her early 20s, with a toddler named Louis who’d been in 10 hospitals for most of his young life, and still didn’t have a definitive diagnosis (eventually yet another bone marrow biopsy sent off to a national (federal) lab would label it as a rare blood cancer, possibly a type of leukemia.
As so often happens when assigned to share a room in an urban medical setting, our two families were from startlingly diverse backgrounds. Then again, cancer is democratic that way, and connects people who might never meet in any other situation.
At first glance, Trida and I seemed unlike each other, aside from our obvious roles as mothers. Later on, living together through critical experiences, we developed close ties as we became veterans of the cancer world. We developed our own shorthand and traditions.
Meanwhile, we got to watch how others tried to make sense of “us.” Doctors’ consultations were great studies in contrasts. Every day in the oncology unit, the medical team meets, confers about cases, then makes rounds at every bedside to meet with patients and parents.
Picture the differences superficially visible in our room. I was a college-educated middle-class white woman from a traditional nuclear family, holding a leather binder with notes and charts, eager to discuss diagnosis, treatment and next steps. Trida? She looked 16, though she was 20. Single mom. Latina. Exuding New York City toughness. (The phrase “Livin’ La Vida Loca” surfaced in her presence).
Young doctors, new to the scene, often assumed she was a high school dropout teen mom. And that’s how they approached her.
Oops. When that happened, I just stood back and waited for the fireworks. It was like watching a “hidden camera” scene unfold around cultural misperceptions. Meeting Trida was its own form of education for them; it was a lesson they desperately needed, and one which the attending physicians had long since learned.
Surrounded by Harvard-educated doctors about her own age, Trida would shake her finger and raise her voice while she stood toe-to-toe with “know-it-all” interns and residents who hadn’t yet learned better than to argue with her, or condescend, or act on their assumptions. She could use medical terminology and recite checklists of acute symptoms in TWO languages, and knew more about the realities of rare blood disorders than youngsters just starting their rotations.
Wise wet-behind-the-ear physicians, who usually went on to earn fellowships specializing in work with pediatric patients, quickly learned to listen and engage Trida in a meaningful conversation. More arrogant newly-minted doctors, who were sure that they knew more, stuck to their arguments. She would wave a palm and dismiss them, and that deadly signal was often the termination of any communication; those same individuals often disappeared after their 2-week shift, never to be seen in Childrens’ hospital again (probably entering the world of adult medicine, sadly). They couldn’t develop effective relationships with the parents of their patients; they sometimes didn’t respect differences, and didn’t treat parents as partners in the process. They didn’t survive the gauntlet.
The lesson? Trida was the only expert on her little son. Just like any parent who becomes knowledgeable about the complexities and peculiarities our own children.
After all, despite their expertise, Louis’ condition stymied the best minds and labs in the country. Nobody knew — conclusively — what illness he had. Or what to do for him, other than to give him frequent transfusions and trial doses of chemo.
Trida held her own in such surroundings, faced off against the staff (their relationship with her was often adversarial) and made a stand for her little boy and herself. I have admired and loved her ever since.
We lived together for months. Decorated our shared room for holidays. Had big holiday meals together on-site at the hospital. When her immediate family — mom, dad, siblings and entourage — came up to visit, they filled a few cars and used every extra chair in the whole oncology unit. Between times, we made fresh guacamole with ripe avocados and salt. Snuck beer. Talked about everything at 2am, like sisters who had just found each other. Adopted each others’ kids.
Trida taught my daughter Sarah how to do a proud “runway walk” with rolling hips. She loved late-night karaoke concerts alone with Jessie and Louis downstairs by the jukebox on the second floor of the hospital. She rarely slept as she called friends at home on her cell phone and flipped through a stack of bills from several hospitals, which she would never be able to pay. Or tried to imagine her little boy outside a hospital room.
When arguing with the hospital administration about policies or decisions, she was fearless. She willingly staged dramatic scenes. More than once, we found a security guard stationed outside our door, because the authorities were arguing with her about whether she could take her little boy off the premises, or remove him from treatment, or other scenarios. Once she made a plan for bundling up Louis in a blanket and handing him off to me, so we could sneak him past the guards if necessary. She even called 9-1-1 from our hospital room, just to make a point, because she thought she was facing an emergency, and couldn’t get the staff to react with the same urgency. Good times.
Louis was my daughter Jessie’s playmate and friend. And inevitably, he was the first of many of her “hospital and clinic friends” to die.
He lived just long enough to go home after two years in 11 hospitals. To be in the bosom of his loving family and grow up for a while longer without chemo, learning to walk, dress himself, and start talking. Including curse words that he loved to shout while on the subway car, when he rode the NYC train with his mama. He wasn’t even technically old enough, before he died, to express a verbal wish to the “Make a Wish” foundation, although they found a way to grant him a final “Wish” experience with his mother anyway.
So Trida called me. And we talked about motherhood. She said that night, in a soft and somewhat dreamy voice, “I’m not a mother any more.”
Unimaginable. Did she really believe that?
I argued with her. “You’ll always be a mom. Nothing can change that. No matter where Louis is now, your love and relationship with him will always be part of you. It doesn’t go away just because you can’t hold him and physically touch him any more.”
But what did I know back then? Now I realize that the reality is much more complex. And that there are a thousand-thousand ways to respond to any loss, and all of them are true, because our ways of coping (or not-coping) are as different as each person who must do so. After all, what human being isn’t shaped, in part, by such experiences?
Sarah is alive. And my daily activities and focus are often shaped around her. I am still a mom. I think I’d feel that way no matter what, because I am so intensely connected to both of my daughters (even when they don’t want the attention, or have moved beyond my reach).
I remember Trida climbing up into the crib in which her son slept. Tall, metallic railings on all sides, but the size of a regular hospital bed. Big for a little guy, but stuffed with soft animals and plastic toys, cars and books. She’d curl up inside, pushing aside Sesame Street characters and plush balls to cuddle Louis, and sleep there with him.
To me, she will always be … a mother.