Who knows if this will become a regular series to begin each monthly chemo cycle. I posted a cycle two, night one post last month. It’s time for another 28 day cycle, and here is where my head is at for this upcoming round. I’ll say at the outset that this post reflects the frustration and vulnerability of this moment.

I am comfortable owning this and writing through it, but I caution those who are more recently diagnosed that my words here may not be appropriate at this stage. Brain cancer is a rare disease, and each of our experiences are unique, so while I always write in a way that I hope connects with my readers, nearly eight years out from diagnosis is a very different experience from those in their first year. For everyone else, I hope my words connect with experiences in your life, but in the end, this is a post I needed to write for me.

I called social security this week to ask about death benefits for my spouse and our kids, you know, upon my passing.

Everyone should probably make this inquiry at some point, but I’d think an appropriate time for that conversation is approaching your 60s and planning for retirement.

I’m sure wealth managers and financial planners are shaking their heads and reminding us that one key to a successful retirement, life insurance, and estate planning is a conversation best started in our 20s or 30s. Maybe that’s right, and any wealth managers and financial planners who are readers, you are welcome to leave your favorite articles or company blog links in the comments, but this blog (thank god) isn’t a blog about financial planning.

This is a blog about brain cancer.

And this week I called social security to inquire about death benefits for my spouse and our kids. This is the sort of thing that I really try to put off doing because discussing the completion of my life with respect to my wishes is one thing and to consider the impact to my family is something else.

Many of my friends, similar in age and life circumstance, minus the cancer, struggle to talk about death or the difficulty of long term survivorship. These are big and intimidating topics that many people in their late-30s, early-40s avoid, and I understand why. As for me, this topic has been thrust on me. I don’t want to discuss existential issues for fun, I discuss existential issues because they are as present for me in my life as feeding the dog and watering the flowers. While I could choose not to dive into these topics, that would be both short sighted given my, our, condition, it is also inevitable. It’s hard to get scans every four weeks and not be regularly reminded of the tumor growing inside my head.

There is an upside to these discussions, when people are comfortable having them. I’ve had a tremendous impact in medical and humanities conference settings sharing about finding meaning when facing mortality, and these insights grow from both study and lived experience. I yearn for these conversations, and I think engaging in them, including for people without difficult diagnoses, is one key to mindful and present living.

Many people are not comfortable with these conversations, and few people have had reason to cultivate their comfort with them, creating a culture of taboo topics. The value proposition for breaking out of the uncomfortable and forbidden topics is something like: By learning to wrestle with the completion of our lives, we become better at living them. Getting to that place of existential maturity requires careful and patient reflection over a sustained period. Like any undertaking, the first step is simply to start, and I guess if you’re reading this post, I am inviting you to start.

Many will RSVP with regrets to that invitation, and I understand why. I really do. Admitting our finite existence may remind us of goals we may not accomplish or raise the times we’ve needed to make difficult decisions or say goodbye to a loved one. We may simply not have the vocabulary for these conversations. My recommendation, if you are a novice to the end of life space, is to check out a book like When Breath Becomes Air, Dying Well, or That Good Night, and invite a close friend or loved one to read with you. If books are not your thing, watch a documentary like End Game or Extremis. Around LA or have the means to get there? Consider attending End Well.

Work with your partner and plan for a way to share thoughts in a non-threatening way, either by email or conversation, and you may find the vocabulary you’re looking for to engage these ideas. You may find a well of meaning that you hadn’t thought to tap into.

Often when lauding the benefits of discussing the completion of our lives, I lift up the meaning that this can bring to your life, individually, and I share what a gift this is to your loved ones who will not doubt what your end of life wishes may be; instead, you’ve normalized the conversation and welcomed others in, so that when the time comes, no one need be troubled with uncertainty about your wishes. You are giving the gift to others to understand their roles as partners in an intimate and universal human experience.

But today I raise a new benefit: Your loved ones may seek partnership now, even before an imminent end and throughout the in-between time, the liminal space, the world of possibilities, when we have an opportunity to join our friends with serious illness to bear witness to their distress and empower an exploration of their desires. If the person who is seriously ill gives the gift of sharing their uncertainty around an end of life experience or they want to share their priorities, goals, and values, you may give a gift of your own in return with your compassion and presence to hear about their feelings, or simply find comfort in the quiet space together.

I take chemo to extend my life, and so, the distress of my diagnosis will be with me in greater ways each day for the next week, but the daily collision with life’s end is a chance to plant the seeds of support in the fertile soil of humanity. Planting season begins with reserving our personal judgments and discomfort and opening our ears to all aspects of life, including its eventual end.

This blog post was published by Glioblastology on April 28, 2024. It is republished with permission.