The author is at the falls with her children. The photo is courtesy of Elizabeth King.
The doctors won't tell me how long I have to live. They can't They aren't sure. They don't talk about response to treatment or clinical trials.
I have a brain tumor that has expanded to my cerebellum and is spreading down my spine, which makes some days hope puerile and useless. I am unaware or unconcerned that it is draining my capacity to remember names and places, follow recipes, descend an unrailed staircase, walk in a straight line, and that it will kill me.
Forty-four feels young for a terminal diagnosis in a healthy body and for the cancer of Ted Kennedy and John McCain, old men in the sunset of life. I have not been considered young in a medical capacity since I became pregnant with my first child. I'm young and old and I'm losing my life quickly.
I have trained myself to forget the present in order to not register it in the future. My dad left under the guise of temporary separation in fifth grade to begin his academic career in California.
We woke up to the fact that we wouldn't live under the same roof again. He was off and I was stuck in the same house we had helped scrub. My dad had assured me that this was temporary. I lived there until the summer before I went to college.
I learned to live outside my body and not be moved. I lived with my dad during the summer. I went to the woods and ran along busy roads. I pretended not to notice the men who were trying to get my attention and ordered my head straight.
I was able to cultivate a shield against pain, discomfort, exposure and muting even the sound of my own name. My sister exclaimed, "I called to you after fifth period, but you didn't look up" I didn't recall it. I couldn't figure out what the world thought I offered and to whom.
Habit, not desire, drove this separation. There was a late-night study group in college. As they raised new questions and consulted additional texts, they were surprised by the interruption but still focused. I wanted to stay with them and listen to what they had to say. Instead, I lurched back outside, towards the noise, the sticky floors and plastic cups of Fraternity basement, the sense that I was a walking shadow, putting one foot in front of the other without desire or destination.
I didn't make any significant changes to remedy my feelings of incompleteness. Even though I wanted to stay in New York, I moved to Florida to run an office transition. At night I lay awake wondering how I had gotten so off track after being isolated and adrift. I was pulled over for driving erratically after drinking too much. It forced me to confront and rebuild, rather than undoing me.
I became friends with many women's groups. The truth about who I am and what I need was told to me. I changed jobs and career paths. I didn't believe that there was a problem inside me that could not be fixed.
I moved to Brooklyn. The man I married was the one I fell in love with when I was 25. Honesty is one of the things I learned to give honest answers to. Do you have any thoughts? I don't know how to help. I have two children who fill my life with joy and love and I never want to have another one. A family was built by us.
I didn't have the ability to write in December. I showed my husband my spelling mistakes. I don't know what's going on. We found a mass in my brain the next day. It took me more than two months to learn of the diagnosis of glioblastoma, and I'm not the only one. The body that once ran marathons and traveled the world was no longer trusted to carry my daughter up the stairs to school.
We were told that I may have months left to live. It's devastating in a lot of ways. I would like to hike Mount Kilimanjaro, speak fluent French, and be a novelist. I thought I would prepare my children for life and help them navigate it. I can't. It's not with any certainty.
I accept the terms because they mean I can be here with my family a little bit longer. I am able to be with them. I get to live in the present.
The gift of this life's journey and the ability to be fully present within it is what I have finally internalize. It's being Life can be hard and cruel, but it is still amazing. We get to see it. We are able to live it. We're in the middle of it. It's not easy to see this clearly, but what a thing to know.
I plan for and prepare my children for the inevitable loss of me, even though I still wish for a cure. I will live with an eye toward what is next for them, for all of us, and make sure I embody the lessons I hope they will carry within them.
I want them to know that I want them to cultivate the courage and ability to be fully present in their life, the joy and the pain. Allow the hurt and disappointment of my decline and death to strengthen you and open you up, rather than shutting you down. Connection over isolation is the topic of discussion. You can find those lit rooms of earnest conversation in the dark. You can explore your evolving truths about who you are and what you want. You don't remember who you touched or who your loved one was if you don't let decades go by. When someone calls you, look up.
A mother and former teacher living with a brain cancer.
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The article was first published on HuffPost.
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