LOVE IN THE TIME OF BRAIN CANCER
Leila Segal
It’s a miracle that Rod and I have been able to stay together with our love intact given the mammoth pressures from the outside. How have we done it?
Soon after his diagnosis, I looked for a couples therapist for us. She had to have experience of terminal illness and brain injury. Through the hospital chaplain, I found Meigs Ross.
We saw Meigs today. I am always scared about the things I say, and by the end of our session relieved of confusion and shame.
As we went to sleep, Rod said: ‘I feel I’m on an adventure in love. And if this illness hadn't happened to me, we wouldn't have found this love.’
Snoozing while receiving immunotherapy.
Sometimes, on days like this, I am hit by the enormity of what we are doing. What we face. It’s so far from normal life. This far shore.
I’m lying down on the hospital bed next to Rod. ‘You rest’ said the nurse. She brought me a heated blanket and two volunteers came with chocolate chip cookies and soda.
How do we find a bridge back to each other when each is isolated in their dismay at what has been lost, the unrecognisable self?
The afternoon. While Rod is sleeping. At the beginning of this I held fast to a notion of myself as ‘good’. It has been hard to throw it on the fire.
Rod made me a birthday card. He wrote: In your sorrow may you find joy.
It is true that there were times at the beginning when I couldn't see how I would survive the loss. I couldn't even see that loss, so broken up was I. Not articulate it at all.
They told us that he would live for 15 months. But it might be sooner than that. Death would come. Ask yourself, how will you live like this? The brokenness of self.
If he is not the same and I am not the same, who are we now when we reach for each other?
Life with brain cancer is very tough. Despite Rod’s survival, the reality is a daily war on several fronts to balance treatment-related effects, medication, and destruction of cancer cells.
So I made him scrambled eggs with cheese and avocado. The doctor said to give him soft food. I fed it to him while he lay down on the sofa in a shaft of low sun.
He said: ‘I adore you.’ I remembered that he said those words to me the first day that we spent together in Oxford walking by the canal. I couldn’t believe he really had said them, then. We hardly knew each other. But it turned out to be true.
At the hospital, his notebook fell open at this page. ‘I wrote it to you,’ he said.
It’s true that love changes through the course of a traumatic experience. And the radical bodily and mental changes of one partner cause repercussive reactions in the other. But the core of love, which is the desire for it to flourish, grows like wildflowers in warm sun.
In the ER again. A fever of 103.
Rod keeps kissing my hand and saying ‘we have our love, no one can take that from us.’
There is sun on the street as I walk home from the hospital along Third Avenue.
I love him more and more. I am at peace. I dreamed of that, of peace.
Leila Segal is the author of Breathe, a short story collection, and of the forthcoming memoir You Came Back, the story of life with her partner Rod, who has lived with glioblastoma since July 2019. Leila leads Voice of Freedom, a participatory photography project with survivors of human trafficking.
Photographs and text copyright Leila Segal, not to be reproduced without permission.
