I only have a few months left to be with my wife and children, maybe two, maybe more, the doctors don’t know. Instead, they talk about “treatment response,” clinical trials, science with a glimmer of hope.
Some days, hope seems childish and unproductive, which is disproportionate to the reality of this brain tumor, which developed in my left parietal lobe, has spread to my cerebellum and is currently spreading to my spine. This thing affects my ability to remember names and places, follow recipes, walk down stairs without banisters, walk in a straight line. This tumor is going to kill me.
Forty-four seems a very young age for a terminal diagnosis in a healthy and active body.
It has been a long time since I was considered a child in the medical field. But here I am, young and old, getting closer to death by the minute and losing my memory faster.
For years I have trained myself to forget the present as it presents itself. It began in the fifth grade, the year my father left under the guise of a temporary separation, taking the necessary steps to launch his college career in California.
Little by little, my brothers and my sister and I realized that we would never live under the same roof again. We stayed in Ithaca, the place where my father uprooted us in pursuit of his doctorate. Having achieved his goal, he left and I found myself stuck in the same two-level house that we had cleaned from top to bottom three years before to get rid of the unbearable smell of pets. “Don’t worry, it’s only temporary,” my father promised me when I was 7 years old. For him, yes, but I lived there until the summer before I left for college.
I learned to live outside my body, or maybe inside it, I wanted to be inaccessible, passive.
The summer before high school, I lived with my father. Leaving my own devices, I explored the woods and started running along the busy roads. I wanted at all costs to keep a cool head, my eyes were dry, I pretended not to jump on the horns of the cars of the men who tried to attract my attention.
I cultivated detachment as a skill, a shield against pain, discomfort, exposure, even muting my own name being shouted down a hallway. “I called you at least ten times, but you didn’t even turn around,” exclaimed my brother. I don’t remember anything then. I was too withdrawn, closed off, unable to understand exactly what the world thought I had to offer and to whom.
Another decade of me feeling divided and incomplete without making significant changes to address it. In my early thirties, I moved to Florida to arrange an office move, even though I wanted to stay in New York and switch careers. Isolated and lost, I played the role of a competent manager during the day, while at night I lay wondering how I had lost my way. I drank too much and got arrested for drunk driving. I thought it would destroy me, but something clicked and allowed me to rebuild myself.
I joined women’s groups and made great friendships. I learned to tell the truth about who I am and what I need. I changed jobs, then careers.
I stopped believing that something was broken inside of me beyond repair.
I moved to Brooklyn. I married the man I loved for years while celebrating my 25th birthday at an Irish pub in Manhattan. I learned to give honest answers to important questions, like “How are you?” ” ” What are you thinking? ” ” How can I help? I gave birth to two incredible children who fill my life with joy and love. We started a family.
And then, last December, I lost the ability to write. I showed my husband my misspellings and nonsense scribbles on our greeting cards. “I don’t know what’s happening to me,” I sobbed. The next day in the emergency room, we found out I had a brain mass. It took another two months to learn the diagnosis of glioblastoma; more to understand how strong and relentless these tumors are, and mine was no exception. Suddenly, this body that had once run marathons and traveled the world to carry my daughter to school in the morning or climb the stairs to bed could no longer be trusted.
Today we were told I may have a few months to live. There are still so many things I want to do: climb Mount Kilimanjaro, speak Spanish fluently; there were so many things I thought I’d be: a novelist, a grandmother. There are so many moments in life that I thought I would live: first communions, summer camps, trips abroad. But I can’t. There is no certainty.
However, I accept my situation because it means I can be with my children, my amazing family, a little more. I will be with them in this world. I can live in this world.
And that’s what I finally internalized, the incredible gift of this life journey and the ability to be fully present in it, to live, to love, to hurt, to cry, to discover.
Because even though life is hard, cruel and painful, it’s still unbelievable. And we experience it. Yes, it often takes something very difficult, something life-changing, to see it clearly.
I will continue to wish for the near impossible, a cure, a breakthrough, a decade, but plan and prepare my children for the increasingly inevitable, my doom. I will live with an eye on what’s next, for my children, for all of us, and I will make sure to incorporate the lessons I hope they take away.
Here’s what I want to tell my children: cultivate the courage and the ability to be fully present in your life, the joy and the pain. Let the pain and disappointment, even the anger, my decline and death and all the sorrows and struggles of life strengthen and open you, instead of closing you. Gravity towards connection rather than isolation.
Explore your evolutionary truths about who you are, what you want, and what you need. Don’t let decades pass before you realize you’re not fully there and can’t remember who you touched or loved. Look up when someone calls your name.