The goal of this season, like the last, will be not waking the stress fracture beast. And the footnote to that goal is always there too: faster, faster, faster. These goals are obviously at odds with each other. Part of growing older means I’ll continue to stumble across this tension - it can no longer be ignored like when I was in college or high school. Many of my friends, my sister, and of course myself have yet to fully deactivate our stubborn, athlete brains when it comes to listening to our bodies. It’s not that we cannot continue to accomplish great physical feats with our more weathered, experienced bodies, but we have to be willing to listen and compromise.
Adult side of brain: Alert, alert! Pain.
Collegiate athlete side of brain: Nah, we good.
Adult side of brain: ALERT! Increasing pain!
Collegiate athlete side of brain: Can you not.
Adult side of brain: ALERT! SERIOUS, CRIPPLING PAIN.
Collegiate athlete side of brain: Fine. I’ll take an Aleve.
Adult side of brain: Inappropriate solution!
Marathons are still possible for me right now, but it takes a careful, skillful navigation to stretch myself without breaking. I had an important moment weeks ago after my first double digit run: my marathoning life chapter may be a short one. We don’t generally like ends - they mean change, disruption of routine, letting go - but many times they are for the better and they become easier if we can accept and prepare for their arrival. This past autumn, as the natural world entered its temporary slumber and I anxiously anticipated the sadness the winter season brings, I became fascinated with the idea of all of our ends; our uniquely shared fate: death. The one year anniversary of losing my grandmother started my brain churning. The synchronistic congealing of my thoughts happened when I attended a talk given by Dr. Atul Gawande who eloquently discussed his book and how our lack of dialogue on death results in a loss of quality of life for our loved ones dying. It felt like he was speaking just to me about my experience with my mom, but as I looked around at all the filled pews of South Church I saw I was one of many people incapable of holding back tears. Tears of doubt and guilt and sadness because maybe we didn't do our loved ones' last days justice.
Every once in a while the U.S. media allows us to see what death looks like - a small, limp, refugee child’s body being carried out of the surf. But for the most part, this daily reality is hidden from us and we go about our lives unbothered by not having the reminder. I get it. People have enough challenges and burdens in their days that they shouldn’t have to be bombarded by their inescapable future. But I think the lack of dialogue on the topic makes death that much more isolating when we suffer a loss. So how can we prepare to die even when we don’t know how or when it will happen? As the saying goes, one person’s happiness is not diminished by being shared, but our fears luckily are. Let’s talk about it.
I cannot speak fully to what my mom was feeling during the time of her illness and during the time she began to die because she was never forthcoming about her feelings about being sick. I knew she felt hopeless at times, but we still managed moments of lightness and laughter as a family. My mom thought she was making it easier for me and my sister by not telling us any details about her health. Sometimes I would push her for more information, trying to figure out which options remained, but that always made her upset so I stopped. If only she could have known the long road paved with guilt, uncertainty, and frustration that she left us because we never had these talks, then I think our conversations during her last year would have been a little different.
What should we have talked about? Ug, where to start.
We should have talked about her stopping treatments and what would make her happy in her remaining days. I didn’t find out she had stopped her chemo until months after when I noticed her hair growing back. Even then she didn’t expound on what would come next or most importantly, what she wanted to come next. I’m not pushing the idea of a death dialogue for selfish reasons. These conversations with my mom would have been important not so I could feel better about her dying, but so that I could have given her exactly what she wanted at the time. Did she want to spend her last few months in Croatia? Were there people she wanted to see? Was there something in particular she wanted to have for breakfast every day going forward? Even if I had been brave enough to ask these questions, I don’t know if my mom would have been brave enough to answer them honestly because like many moms, she didn’t want to burden her children.
We should have talked about the process of dying. I will abridge my treatise on the medical field’s treatment of the dying for everyone’s sake. I have a huge problem with the way our mom’s case was managed. The first time I met her palliative care team was three weeks before she died and only because we had an emergency stay in the hospital. It’s beyond me why immediately after my mom was diagnosed as stage 4, she didn’t have palliative care resources provided to her and to me and my sister. I remember during that last stay in the hospital, the palliative care coordinator stopped by and dropped off a thin folder of information, spending all of five minutes debriefing my mom. That folder represented everything that is wrong about the process of dying in this country. Every single pamphlet in that folder should have been a conversation that we had with our mom, her doctors, and the palliative care team together. Damn straight these would have been hard conversations. But I would have been a little more prepared for the moment, for example, when as my mom’s mind started to shutdown, she had an evening where she was hysterically crying and yelling that no one loved her, that I didn’t care, and she hated me. It was pretty intense. I sat next to her forcing her hand in mine and kept repeating over and over “I love you” until she calmed down and closed her eyes. A few minutes later, she opened them, oblivious to what had just happened, and asked for some water. The body is shutting itself down during the process of dying, but so is the mind - and these two journeys are very different and present very different challenges. It would have been nice if someone with experience could have helped me formulate a game plan. Dying is an unpredictable process, but if a doctor had taken the time to explain all the possibilities, it wouldn't have been so terrifying.
We should have discussed our mom’s medical-related wishes. Like the last trip to the hospital - should it even have happened? When I look back at it, if I had been prepared, probably not. My mom had been in bed for days sleeping because she had taken too many painkillers and her liver failure due to the cancer had begun (I didn’t know any of this at the time). I was like a deer in the headlights. Finally my boyfriend noting that she had been in bed for nearly four days, convinced me to call an ambulance. It made sense and based on what we knew, it was the right choice. If I had been brave enough to ask someone what her deterioration would be like, I could have been ready for the first downward slide. Instead we ended up at the hospital for a week as doctors worked to get her “healthy” enough to go back home to die. She had always hated the hospital and her last trip could have been avoided.
I could go on and on listing all the moments my mom, sister, and I could have had or could have avoided if we had not been too afraid to talk about death. My thoughts written here barely scratch the surface (call me if you want to talk about how the wrong executor of your estate can make your children’s lives a living hell for five years after your death). It has taken me ten years to let go of the tremendous guilt associated with not doing everything that I could have for my mom. Don’t let yourself or loved ones get away with dying alone or quietly. The more we talk about it, the less terrifying it becomes and the less terrifying it becomes, the greater focus we place on living rather than avoiding dying. There is a remarkable positive feedback loop that can occur when you let yourself think about the end. When you identify what you would like the end of your life to be, to contain, it’s usually what makes you content in your daily life. What is so beautiful is that in allowing yourself to consider your end, from that day forward, you will find yourself making an effort to achieve that thing, that feeling, that taste, daily. I wish I’d asked my mom in her last months, “Mom, you only have a few more weeks of feeling good, what do you want to do today?” And maybe things wouldn’t have been too different from how they were. We may have still ended up sinking into the couch watching Gilmore Girls every Tuesday night. But I’ll never know. If I only had a few weeks left to live, I now know the answer to that question for myself. Everyone should. It’s pretty easy to hedge your bet for a sudden death too (it’s a cliche for a reason): honor those end of life wishes on a daily basis. It’s simpler than it sounds.
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