Dear Reader,
This post is a bit off schedule. That’s because some things happened last week that caused me to be a bit off and let go of tasks that, at that moment, didn’t seem to be very important, like focusing on a Substack post, for example.
However, I process life and the human experience on this earth through writing and through making photographs, so I started writing and this came together.
This post includes thoughts on death, grief, and terminal illness, not exactly things we like to think about, but I hope you will hear me out. It is also very long, so bear with me.
The human experience in this world is so rich, vast, beautiful, and complex. And an important part of life is the experience of pain and grief, and the unavoidable reality that all of us are going to die. None of us know when it will happen. None of us know how life will play out and how many years we get to spend in this world.
Most of us cope with this reality by not thinking about it. We wake up each morning expecting to go back to bed at night and so on. As we should. We make plans for the upcoming summer, we write down our goals and think about everything that we would like to accomplish in life, and often, at least in my experience, we imagine the “Somedays”: “Someday I will travel to Australia”, “Someday I will go back to school”, “Someday I will publish a photography book”, and “Someday I will live in the mountains surrounded by quiet nature.”
There are people in their eighties and nineties that are still going strong and enjoying life to its fullest. If I get to be one of those people, the “somedays” I dream of are still a real possibility. Maybe.
But the truth is I don’t know.
When I think about life this way, I see each day, each month and each year I get to be alive as a gift. A gift that I cannot take for granted.
And as much as we often forget about the reality of death, live in denial of it, or are naturally focused on life rather than death, it will hit us eventually. We will be faced with it sooner or later. Everyone will. There is no other way to say it.
In one of my early Substack posts, I wrote about my first significant experience with grief when my brother passed away. I wrote about what I call “the veil of grief.” I tried to explain the experience in which everything that we normally worry about on any given day becomes trivial when grief hits. It’s as if there is a veil between you and the rest of the world, and life as we knew it doesn’t matter anymore. It’s as if the daily decisions and concerns we deal with in our daily life become completely insignificant and not worth caring about. Grief becomes all-consuming. The world keeps moving but you become an observer rather than a participant. There is a disconnect between the reality of grief and the reality of everyone around you continuing with life as usual. Life as usual seems to be an impossibility, at least temporarily.
This is what I remember most of my time of grief. It lasted for a while, but eventually the veil lifted. I know it happens in stages and the process is different for everyone, but I am also certain that it does happen - eventually, slowly, incrementally. You are adjusting to life with a big hole inside of you, you are learning to live with that hole, and the seemingly trivial parts of life slowly become important again. The hole remains, and life continues on with and alongside it. And you will find out that there will be space for both, space for the sadness over the loss and space for the joy and excitement of life, space for the ugly and space for the beauty, space for tears and space for laughter.
It’s a mystery, but a true mystery.
Last week I received a message from a dear friend and the veil made a reappearance.
When she said that her meds stopped working, that her tumors are growing, and the inevitable signs and symptoms of her brain being taken over by cancer cells have become more visible and obvious, from losing balance to experiencing seizures, the looming threat became inevitable - there is no cure and no more treatment.
Four years ago, the doctors gave her six months to live. The meds that they prescribed worked miraculously well and she was given more time than anyone expected. There was so much hope that she could beat the odds.
This time it is different.
Of course, there was always uncertainty. She was living with cancer even if the cancer was successfully kept at bay; the uncertainty became a part of her and her family’s life, an often unbearable part of life. Somehow, I thought, if anyone could beat the odds, it would be her. Somehow I had hope that she could live for many years. And other times, when I thought about her, I wondered when things might change, and whether the medications would stop working.
And now the time has come.
The doctors are giving her a few good months but, of course, no one knows exactly how things will unfold. The fact is that the tumors are growing and there is no more treatment, only comfort care.
I have to say that this news has put me into a daze. Life is busy as usual, and I have things to do, things to write, things to work on, a course to teach, and chores to accomplish. It’s not that I haven’t been doing any of it, but the tasks have seemed less important. I have been functioning, but I have been functioning much slower behind a thin veil of grief.
She is still alive, but the grief has already started. It’s truly a strange experience.
After receiving this devastating news, I needed more silence. I needed to take a break from the internet, social media feeds, Substack posts, the notes section, the news, the images. Everything that normally comes at me on any given day needed to be pushed away. I needed time to process, time to be, time to figure out how to respond, I needed quiet moments to digest and work through this part of life that no one ever wants to deal with.
I still need to figure out what to do and what to say, and how to be there for my friend.
It’s not easy, is it? I thought I was capable, but it turns out I have absolutely no clue how to talk to someone who is dying, someone that is about my age, someone I have admired for so long, someone that positively impacted my life in so many ways, someone I care deeply about.
There is no playbook on how to comfort someone who is facing death in the near future.
But then I remembered some of the books I have read and podcasts episodes I have listened to on grief, how to be there for someone in grief, or for someone who is facing death.
I remember what all the messages had in common. It was one clear message: Show up!
Show up as your normal self. You might not know what to say, show up anyways. You might not know what to do, show up anyways. You might be scared, show up anyways. You might be busy, show up anyways. You might feel overwhelmed, show up anyways.
It’s not easy, but it is that simple.
Meanwhile, life continues as usual. May is my favorite month of the year. The blossoms are blooming everywhere, and I cannot get enough of all the Spring green around me, the blue sky and the warmth of the sun. May is also one of the busiest months of the year filled with work and celebrations - my birthday is coming up, my son’s birthday as well, there is our anniversary, and then there are recitals, track meets and, oh, my son is graduating from high school and we have a party to plan. I am so excited for him and I am so ready to celebrate.
Do you see what I mean? Life is complex. There is excitement and then there is deep pain. There is beauty and then there is sadness. And feeling it all and navigating through it is part of life. Clearly, we are not machines, but I think we sometimes forget. We get up in the morning and hurry through the day, sticking with our to-do list, our schedules and our goals, and when we can’t do it all, we feel like failures. And when grief enters into our lives, we try to get over it and function as usual, but it doesn’t work that way.
Here is what I know. I am going to embrace the beauty this month. I am going to celebrate every single occasion. I am going to be excited and filled with joy. And then I am also going to be sad. I am going to feel pain and I am going to hold it all. I am not going to be perfect. I might not stick with a plan or schedule. I might crawl into bed at times and cry. But I am going to try to show up in whatever way I can. I am going to love my family and I am going to love my friend. I am going to feel it all because I am human.
Life is so precious. Live it. Celebrate it. And show up for all of it.
Items Of Note
Unfortunately, I cannot find a Saturday morning in May where I can host our “Creative Hour” on Zoom. I will soon announce a date for June. Thank you for understanding!
Yes to all of this, Manuela. I found myself nodding at paragraphs that resonated. I feel you and showing up is exactly what is essential to your friend at this precious moment in time. Sending you hugs. I was in your shoes a few months ago. Thank you for sharing.
Oh Manuela, it's so, so hard to prepare to lose anyone in our lives. We are about to lose my mother-in-law so once again, no surprise, you and I are passing through similar halls in the house of life. When you said, "You are adjusting to life with a big hole inside of you, you are learning to live with that hole, and the seemingly trivial parts of life slowly become important again," I immediately remembered the moment I understood that concept. I think I called it living without a limb but it's true, regardless. The broadcaster, Anderson Cooper has a podcast about grief in which he discusses this at length. We learn to live with it but we are so impacted by it that so many of the trivialities of life lose their importance. The gift of grieving is that we remove the layers and filters covering our vision to what is most important. I truly hope that your birthday and son's birthday and all the lovely celebrations can happen with presence and gratitude, but it sounds like you're already there! Lots of loving thoughts as you pass through this.