In 2001 a few months after my two brain surgeries (1999 and 2000) to remove a skull base tumor was successful, I engaged in a mentoring program to support other patients. Brain tumors are such a serious topic. And when you are in that environment, there is little humor. The endless string of appointments and waiting for results, surgeries, radiation, and in some cases, chemo are a drag. I wanted to bring an element of humor into my mentoring.
Amy Spindler was the third person I mentored and we met on a brain tumor forum in 2003. She was a style editor for The New York Times. I knew she was a writer, we had that in common, but I didn’t know how well known she was. She, like myself, struggled with the potential mortality of a brain tumor.
Amy and I never met personally. We talked on the phone a few times. We wrote emails. I sent her letters, cards, and care packages.
We corresponded through email mostly for about nine months to a year. She was so hopeful. I was hopeful for her. My surgeries were over (until it returned 15 years later) and I wanted the same outcome for her.
We talked about death. Life.
And the spaces in between. We made jokes about brain tumors. I remember telling her I was parking in handicapped now due to my half-paralyzed tongue. That’s not politically correct, but this was a private conversation between two people who faced unknown outcomes and needed an outlet for laughter.
She had so much grit and determination and I see that looking back at all that was written about her. I saw her vulnerable side. The part of her that didn’t want to die. In the last few weeks of her life, she really struggled with what was going to be her ending. And she was in pain. My other patient-friends had had positive treatment outcomes and I was in shock over what was happening to her and had a hard time accepting she was probably going to die.
Others might tell you some story of how stoic their loved one was in their last weeks by entering into death without ever complaining or saying anything about their own mortality. That’s BS.
Do you think people who fight for their lives and get a prognosis of “months to live” are not in agony over facing their mortality? Because they stuffed their pain for the benefit of their loved ones doesn’t mean they were somehow “stronger.” It means they suffered and struggled alone. And it means that someone lost the opportunity to connect with their loved one who was dying in a meaningful and special way.
When people support that “stoic” narrative, they do a disservice to what strength really is. And I believe it’s allowing yourself to let that guard down with someone, to cry and whine over what is a really sucky ending. Amy did that although I wouldn’t call it whining. That’s the side I saw and she knew I didn’t have any expectations she would be anything else.
Until today, I didn’t even know what Amy looked like or how well known she was. I simply knew her as a fellow brain tumor sufferer. Search engines like Google weren’t as fast and efficient as they are now.
One of the presents I sent people whom I mentored was a package of these stupid flamingo pens. Because you can’t set these things on your desk without laughing or smiling. I use them to trigger myself out of a negative mood. When I had sent them to previous patients, they told me it was joy in the mail. That feeling of giving someone a laugh elevated my own emotional healing. I wanted to give Amy that smile.
I sent a package of these flamingo pens to Amy
About a week and a half later, the package was returned and my stomach tied itself up like a washcloth being wrung out.
My heart froze in fear. There was no one I could call and I knew something was wrong. An internet search later that day revealed she had died.
I had survived a brain tumor and she had died. How was that fair? She was only 40 years old, a year younger than me in 2004. Not only did I struggle with grief, I struggled with survivor guilt.
A few days later, I received an announcement about her funeral. Someone had gone through her things and thought I was important enough in her life to include me. This person had made the effort to find my address, send me that card and I will always appreciate that because I was surprised anyone of her friends and relatives knew I existed.
At the time, my husband and I had two young children, no childcare, and not a lot of funds. I was a stay at home mom who freelanced on the side. Arranging an out-of-town trip on short notice was a stretch although probably not impossible. I wanted to go badly and regret not having found a way to go. Money was tight back then.
I was ordering some of these pens to send out today
And I remembered Amy and decided to look her up again. I had not done that since Charles’ death.
I was struck by how many times, our fear of pain prevents us from helping others or ourselves. We want to avoid feeling bad so we turn the other way.
While I did feel a loss, what I got from Amy was worth the effort. She trusted me enough to share what was truly in her soul. I put my fears aside, I listened, supported, and was not afraid to be with her in her pain.
My experience with her allowed me to let Chris Baker into our lives. And while he died of a drug overdose in 2019, I’ll never regret having supported him in his recovery. I went into that friendship with eyes wide open but my mind focused on the present.
We never know the outcome of our efforts to support other human beings. It can end well, or it can end in death. But I can tell you when I have done it, it’s been an honor and a privilege.
I learned not to let the fear of death rule my life and prevent me from helping or supporting someone. I have learned through all my experiences to sit with someone in their pain without trying to fix it because that’s what they need. And I learned that no matter how many times I’ve looked at those tacky pink flamingo pens, they still make me laugh and remind me of Amy Spindler.
