The day before she had brain surgery, my mom couldn’t find the word for pen. In the ICU afterward, when asked if she was a boy or a girl, she blurted out “Boy!” then swore. The speech therapist took notes and left the room. My mother grumbled, “Bitch,” clear as day. This was not her nature, though it seemed an appropriate response.
“Shoot me if I can’t talk,” she said a few days later. “Really.”
She had a glioblastoma, a cancer with a median survival rate of twelve to eighteen months. She had surgery six months after she was diagnosed, and continued to live, somewhat miraculously, for three and a half more years. After the operation, her ability to speak reemerged, though it ebbed and flowed. We sometimes thought her language was gone forever, and then it would stunningly reappear. My mother had aphasia, common with brain injury and strokes; she had difficulty speaking, listening, reading, and writing, but her intelligence was not affected.
Two years into her illness, as my mother sat and listened, my stepfather and I had a conversation about hiring a caregiver. I had moved in with them because she needed twenty-four-hour care, and we were exhausted. My mom kept trying to interject, but couldn’t get the words out. I prompted her, and she put a finger to her lips and closed her eyes, effectively telling me to shut up.
“Just say it,” she said when she opened them. “Longest. Death. Ever.”
We were stunned, shaking our heads, and then she started to laugh, and the three of us cackled together until tears came.
• • •
I had a rare mother, a woman who honored exactly who I was, whether that was a moody teenager or a depressed young adult or a grieving daughter who wasn’t as sure about reincarnation as she was. She also listened to me, even when I was a kid. For most of my adult life, I was adept at listening to her. Then her words began to evaporate.
In dealing with a loved one’s aphasia, family members are advised to “give the individual time to speak. Resist the urge to finish sentences or offer words.” I did many things well for my mother while she was dying, but these were not among them. Words were our currency, and I depended on hers to make sense of my life. When she got stuck, I guessed endlessly at what she was trying to convey. Often, I was aggressive in my deciphering.
“Fuck it. Forget it,” she said in those moments, waving her one good hand in my direction.
I couldn’t stand it when she gave up. It reminded me that her supply of words was finite. Plus, no one was better at this translating than I was—not my stepfather, her closest friends, or my sister—and I was smugly proud of my abilities. I had always wanted her to tell me yes, I was her favorite child, but she was not that kind of mother. When I did pinpoint her thoughts, it was unspoken proof of this fact.
• • •
My son, Jamie, born shortly after the one-year anniversary of my mom’s death, recently turned two. As he learns to talk, I’m nearly as anxious for him to find words as I was for my mom to stop losing them. I worry that other kids his age are more able to clearly relay their needs and wants, since many are already speaking in full sentences. He does babble consistently, and I translate and fill in the blanks as I did for her. For the longest time, the only recognizable words beyond “mama” and “dada” and “no” were “choo-choo” and “wheel.” Now, more are coming, along with questions: “What dis? What dat?” and short sentences like, “Watch Elmo.” I have a tendency to overenunciate when I answer him, and to chat when he’s quietly playing.
When I was pregnant, I came across several studies on the impact of a mother’s voice on a child. One study showed that the sound creates a neural fingerprint in a child’s brain, triggering specific areas related to emotional regulation, the reward circuit, and the processing of visual face information to light up on MRIs. Essentially, the more of these neural connections to these parts of the brain, the better equipped a child is at social communication. Another study reported that hearing your mother’s voice, even long-distance, is as soothing as a hug.
I’ve carried around a familiar feeling the last few days—part hormones, part stress, part toddler-induced exhaustion, part grief. It’s familiar because of the way it rests at the back of my throat, not quite tears, not quite anger, something I can’t fully identify. All it used to take was hearing my mother’s voice over the phone for me to burst into tears and pinpoint the problem.
“Ever since you were little,” she would say, “you’d hold it in until you just couldn’t anymore. I always knew when you needed to let go and cry.”
I know my desire for Jamie to master language is inexorably linked to my mother; since her death, I have held onto the idea that eventually I will have the kind of connection we shared with someone else, and I am working to build that kind of authentic trust and openness with my son. I have a bond not unlike this with my husband, whom I met a few weeks after my mom’s diagnosis, and whose father died of the same brain cancer she did—a series of events that forged an enduring intimacy between us. He is devoted, patient, and wonderfully willing to process my feelings. The problem is, he’s not my mom. I hope my son and I will know each other the way she and I did, so that when he does really start talking, it will be a continuation of the conversations I had with her my whole life.
Of course, there is no guarantee that I will be my son’s confidant the way she was mine. I felt I could—and did—tell my mother nearly everything, from each bout of immobilizing depression to an endless stream of wrong boys, the worst of which was a man in his forties who had a live-in girlfriend, two young children, and an ex-wife, and who had the word CLARITY tattooed on his back shortly after I broke up with him. While she was always calm and gave me sage advice, I know now that I almost worried her to death. She never burdened me with her problems or acted as a friend instead of a parent, but together we analyzed and obsessed over things; we broke situations down and built them back up again until there was a shared level of understanding. It was, for both of us, immensely comforting. My friends often sought her out for advice and support too, unable to form the same kind of relationships with their own mothers, steeped as they were in unrealistic expectations, controlling ways, or endless criticism. I desperately want to be this kind of mother to Jamie, but I acknowledge that I will have to work tirelessly to provide the same unconditional love my mother did. It’s still the early days, but I can see that the love I offer is not so generous. In fact, since my mother died, my love is often paired with insatiable need.
My son recently fell in love with Where the Wild Things Are, one of my favorite books. He’s starting to memorize it, and when I read it to him, I overact the dialogue, including where Max tames the Wild Things and says, “Be still!” He anticipates this, and I can see him looking at me out of the corner of his eye, waiting. When I turn to him and say what he knows I’m going to, he giggles uncontrollably, then holds out one chubby arm, spreads his fingers wide and says some approximation of the line. We are developing a shorthand, not dissimilar to the way my mother and I communicated as her speech disappeared. Pre-verbal, post-verbal—it looks much the same.
While I vividly remembered the way trees grew in Max’s bedroom until the walls dissolved, leaving him in the middle of a forest, and the idea that you could leave your family for a romp in a magical world, then return back ambiguously through space and time, “over a year and in and out of weeks and through a day and into the night,” what I’d forgotten was how real that possibility felt. My son already trusts, like I did, that he will always have a home to return to, where his still hot supper will be waiting for him, in that eternal place where someone loves him best of all.
• • •
To deal with my mother’s aphasia, hospice provided us an archaic flip-book of dated cartoonish images, circa 1965. When she couldn’t find her words, she’d take in those poorly sketched people, places, and things—the slice of pie, the frothy beer mug, the post office—and tap each like it might eventually reveal the secrets of the universe. Although it was often a useless exercise, I was patient. Sometimes, when she got frustrated, I’d point to a few of the most ridiculous drawings to distract her.
“Wait,” I’d say, “You want your parrot? No, you want your cigarettes. You want me to get your parrot some cigarettes?” Then she’d laugh and let go of whatever she was trying to communicate.
About nine months into her illness, she took to saying, “I can’t talk,” when her friends came to visit. Hospice offered up a device called a Talara, a clunky digital recorder with customizable labels. I spent hours meticulously recording her most used phrases in my voice: “How are you?” “How is your family?” “I want more tea”—because she always wanted more tea—and “How much money is in my checking account?” I tried to capture her in those sound bites, and they served as a small reprieve from the knowledge that I would have to watch her lose everything before she died.
She had been excited about the Talara, and initially she proudly pushed the right buttons at mostly the right times. After a few weeks, though, it sat on her lap unused. She entirely lost interest shortly thereafter, and she and I went back to our old methods. It was like this until she died: at each progression of the tumor, which chipped away at her speech and memory, I modified our language. Beyond my own needs, I wanted her to know that I still saw her, and that the core of who she was would never be erased. Sometimes, we resorted to the flip-book and its parrots and cigarettes, until that too, was abandoned.
• • •
When we are together as a family, Jamie gravitates toward my husband, since I am with him most of the day. Daddy’s time is more precious, and his presence more exciting.
Lately, though, if we are separated in a store, I will hear, “Mama, Mama!” from several aisles away.
My husband will say, “She’s over there, buddy.”
When I peer out around a corner of an aisle, I will spot his blond head bouncing toward me. “I see you, I see you,” he will say.
“Yes, baby,” I will say. “Here I am.”
He is not a difficult kid, and his dependency on me isn’t intense, which is a relief. As a motherless, older mother, I assume Jamie will lose me earlier than if I’d had him in my 20s or 30s, like most of my peers. I will be in my sixties by the time he goes to college, and he won’t be thirty by the time I’m as old as my mother lived to be. Part of me believes it might a better thing if he doesn’t love me as much as I did her, as if less love now might equal less pain in the future. He is rarely inconsolable these days, with teething and sleep regressions behind us. But the other morning he was clinging to me like a baby monkey. He wouldn’t let me put him down but was simultaneously fighting me.
He kicked and he howled, and I said, “Use your words. Tell me what you need,” knowing full well how few he actually has.
I held him tightly, rocking him the way I used to when he was a newborn, and his breathing slowed, and he stopped struggling. He tucked his head into my neck and closed his eyes. I thought of all the things I had to do, and how little time I had to do them, but I kept swaying, dancing my boy until he fell asleep in my arms.
• • •
Despite all her struggles to communicate, there was one word my mother never lost, not even at the very end, when just the scrunching up of her nose let us know that’s what she meant. Fuck. My mother was smart and poised, a geriatric and hospice social worker who had practiced meditation and yoga for forty years when she died, but she loved this word. It stemmed from a number of things: growing up in a repressive household, coming of age during the women’s liberation movement, and being a single mother. It was such an important word to her that when the doctor warned us that she might not regain all of her speech after surgery, we made her a laminated point chart that included “yes,” “no,” “more tea,” and “fuck.”
Love of this word was another thing we shared, and it is such a part of my vernacular that I thought it would be slightly more adorable when my son inevitably said it. When I woke up the other morning to the sound of him chanting “fuck” in his crib, as he might “doggy” or “milk” or “mama,” it was funny, but it was also clarifying. It was evidence of my impact on him, a straight line of transference completely exposed. It made me think about how fetal cells can cross the placenta and enter a mother’s bloodstream, allowing them to travel to other parts of her body, including her skin, heart, and brain. My mother died with some of my cells still inside of her; I carry with me my son’s DNA.
The other day, I heard him giggling to himself in that twilight between naptime and late afternoon. I stood at his door and listened for any bits of conversation mixed in with the laughter, but it was just that—tinkly sounds with soft pauses, during which I imagined my mom was telling the next joke. I am only beginning to understand the ways in which the three of us are connected.
• • •
The night I learned my mom was terminal, and that she would die at least twenty years too soon, I thought: I do not exist without my mother. I realized then that she was the true love of my life.
Afterward, the act of holding onto her words was one way of assuring myself that not only was she still here, but that I was.
Four years into her illness, she told me, “I’m done.”
I understood. The tumor was simply taking too long. She’d been permanently paralyzed on her right side since the surgery, and it had been roughly two years since she could fully hold up her end of a conversation. In the previous six months, eating and drinking had started to come with the fear of choking to death, because her swallowing reflex was impaired. She could no longer read, which had been one of the great joys of her life. We were now dealing with issues entirely separate from the cancer: constipation, swollen limbs, atrophied muscles, and adult diapers, staving off bedsores and bone fractures.
“Hard to watch,” she said. I asked her if she meant the guilt she felt because we were taking care of her or the comprehension of everything she’d lost. “All of it,” she said.
To that, I found myself saying, “I do not want to see you in this bed in three months.” She knew what I meant.
“I’m done,” she said again.
In the weeks that followed, her friends and I went over the options with her, although she was already aware; she had guided countless people through the dying process in her decades of hospice work. We knew she wanted a conscious death and a modicum of control, so we helped her pick a date to stop eating and drinking. In the meantime, she would sometimes forget what she had decided to do, and I would gently remind her. She kept forgetting, and I kept reminding her, right up until the Wednesday morning she had chosen. I went into her room first thing, and she signaled that she wanted tea.
“Tea, Ma, or freedom?” I said, moving my hands up and down like an unbalanced scale. Nearly all of her words were gone, and she was ready. I couldn’t hang on to them, or her, any longer.
She thought about it. She shook her head slightly side to side. “Freedom,” she said clearly. “Freedom.”