Letters From Cancerland: Labyrinth

There is a small private liberal arts college here in the community, not unusual at all in Ohio as this state used to have the highest concentration of four-year private colleges in the United States. Like many small private liberal arts colleges built in the nineteenth century, it has a scenic campus, a portion of which also serves as an arboretum. A few years ago, a family donated money to install a labyrinth on one of the expanses of lawn in an area that is open but secluded, set below the main paths, and surrounded by large, mature trees.
This labyrinth is not a maze of winding ways that dead-end in to hedges or walls. It is built flat on the ground and made of contrasting stone, with the path in a buff color and the border in a dark gray. It was intended and is indeed used as a walk of contemplation, with meandering spirals that take you into the center and back out again.
Several weeks ago, I began walking the labyrinth on a regular basis. I walk it in the morning, often right after breakfast. I have found that the 15 minutes it takes helps me settle into my day.
The purpose of a labyrinth like this is to center oneself, regardless of the world raging all around and, indeed, often within oneself. As I type these words, I have been working remotely for over two and a half months. It has been equally long since I have been in a store or shared coffee with a friend. Conferences, including one at which I was to speak with a close colleague, have been canceled. As the spouse of an executive director of a symphony, I have witnessed firsthand how to shut down a season and what decisions are ahead in opening a new one. From the worldwide pandemic to the protests in Minneapolis and across the United States to accepting that I will not be traveling to the Pacific Northwest to be with my children and grandchildren, the world is indeed raging all around and within me.
So I walk the labyrinth.
Is it coincidence that during this time of upheaval my lab results for my multiple myeloma, after months of straight lines, decided to jump around? Surely it was, but the resulting jolt of a possible relapse was just one more stick to throw on the fire.
(The subsequent labs, taken four weeks later, bobbled back down enough that my myeloma specialist said to continue the same treatment I have been on since July 2017: infusions, now every four weeks, of Darzalex [daratumumab]. To him, the risk of changing treatment in the midst of the COVID-19 crisis was something to take on only if I was clearly relapsing.)
It is not coincidence that I began walking the labyrinth between the first and second sets of labs and after the teleconference with my specialist. And even though the immediate crisis of relapse receded, I have come to depend on the solitary walk.
When I first began walking the labyrinth, I had to look down the entire time. If I looked too far ahead, I would get caught up in wondering where the path went and often step off the path or miss a turn. That was the contemplative lesson for me as a beginner: a labyrinth is about now, it is about the immediate moment, it is about being present. Only when I got to the center and could stop and look up at the towering trees, or when I finished it at the place I had begun and could again stop to catch the morning sun through the pines, did I sense the larger world.
In recent days I have become aware that my feet have started to learn the labyrinth. Not so much that I can walk it without thinking, thus defeating the point of a labyrinth, but enough that I can see ahead or, perhaps more accurately, feel ahead. I am still walking it purposely, and now there is an added layer of understanding of where I am going. I can now occasionally look at that morning sun just starting to filter through the pines before looking back down.
It occurred to me this morning while walking that this new stage of knowing the labyrinth is an excellent model for where I am in the progression of my myeloma.
My overall quality of life has been steadily dropping, not because I am relapsing, but because my body has taken a lot over the now 15 and a half years since I was diagnosed. I have been in constant treatment, with only a few very short breaks, for the last seven and a half years. That is a lot of toll on the body. The label for my myeloma is “persistent,” and because it is persistent, it is always pushing against me and against the treatment. It is indeed a ponderous chain I drag around daily.
But I have started to learn this newest level of feeling lousy, much like learning the labyrinth. I know what it holds, I know how it feels. I know that if I wake at 2:30 a.m. because the myeloma sickness is rolling through me, I can remind myself it’s just that, take some acetaminophen (paracetamol, Tylenol) if it’s really strong, and usually go back to sleep. I have learned to tell myself it is acceptable – actually, more than acceptable! – to not complete a task “right now” if I am not up to it, whether that task is a big one like planting a garden, or as small as folding towels out of a dryer.
More importantly, I have come to realize that learning these things, to step away from a task, to wrap myself back into sleep despite feeling ill, is not giving into the disease, but instead finding ways to move forward with my life even as my life continues to wind down.
So I walk the labyrinth, within and without, in all kinds of weather, in contemplation and in gratitude.
April Nelson is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of her previously published columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
I love your columns, April. They’re poetry.
Without being flippant, you stare this pest in the eye, and dare it to take your joy.
Very encouraging friend!
April, I thank you for your column. You share your story that sings. Hope you are able to see your family and this messy virus comes under control.
Dear April, thanks so much for your column. I can imagine the labyrinth and, because of your lovely writing, some of what life is like for you. I wish I could walk in your labyrinth in the morning as the sun begins to bring warmth and light to the day. Mostly I wish for some good days for you despite the awful things raging around us right now.
Dear April, thanks for your column. This summer seems to be coming up as a quieter one than usual, in terms of travelling, especially to see family. I hope that you can connect with them somehow. Near where my mother lives, on Vancouver Island, there is a garden that is open to the public and funded by donation. Volunteers, including Mom, run the garden. It sounds quite a bit like the arboretum and labyrinth that you describe. It is meant to bring peace and tranquility to the visitors, and there is a flat labyrinth there too! I always walk it when I am there. At first I used to sort of skip through it quickly, probably missing the point of it, but now I walk it more slowly. The last time I was there was in September 2019. I hope that you have a nice summer, despite all that is raging around you.
I love the sound of that labyrinth! Sometimes we discover new things that we would have never bothered with if it weren't for something that forces us into containment. Glad to hear your numbers didn't jump so high that your doctor thought it necessary to switch treatments. Take care!
I have enjoyed reading your column, as always. The labyrinth sounds wonderful. I love that you walk it slowly and are able to be reflective as you go. I have always walked quickly, power walked if you will. I am pretty much known for my quick, brisk pace. However, like you, I have learned to slow down and live in the moment. Sun rises are the best part of my day. We live by beautiful Lake Superior, and we try to walk the LakeWalk in the mornings when the east wind isn’t brutal. It’s an amazing start to our day to see the sun reflected over the water. Starting your day walking the labyrinth is so positive. I can imagine the tall trees and the beautiful pathways from your descriptive words. Thank you for a lovely column. I hope your numbers return to a straight line once again. Perhaps this time of reflection each day will calm your soul as well as your body. We can only hope. Hang in there!
April, thank you so much for your column. It was so beautifully written and meaningfully laced with imagery that I felt like I was there. There is a similar outdoor labyrinth in the museum district in my city, and I find that it is such a peaceful thing to walk it and be alone with my thoughts.
Similar to your experience, I see the toll that ongoing treatment is taking on my husband as well. Sometimes I wonder what's worse for him, the physical symptoms of his myeloma, or the psychological ones?
I am so sorry to hear about your bouncing numbers! I hope that they will normalize soon and you can avoid going on a new treatment. I hope that your reflective moments on the labyrinth will ease your difficult days.
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