Unstable Ground & Holding Hope Gently

from the "rediscovering yourself after cancer" issue of Elephants and Tea

Dec 11, 2023

A few months ago at work, we were talking about community. The prompt was to share one of our communities where we felt a sense of belonging and why. Last week, a group of nonprofit leaders returned to this conversation on Zoom, sharing photos of their communities and what it looks like to build belonging.

All of those communities were in person. There’s something powerful and important about being proximate to others. Physically close enough to touch, lean in, share food. I have many communities like that myself, but a few months ago I didn’t share about one of those. My answer to the prompt was Elephants and Tea, a magazine for adolescent and young adult cancer patients, survivors and caregivers. Up until that time, I hadn’t met anyone from the magazine in person.

Despite that, there was something really special about reading people’s stories in their own words, especially during such a challenging experience as young adult cancer. And there has been something affirming about seeing my own words alongside them. Something that feels intimate, even at a distance.

I was very fortunate to be featured in the September 2023 issue of Elephants & Tea with an article “There’s nothing more American than chemo with a laptop.” This month, I’m on the cover of the December issue which includes an article that’s an excerpt of my memoir-in-progress (which feels scary to type, but I’m hopeful I will have more to share someday soon).

This is a community I’m proud and grateful to be a part of and you can read the full article just below.1

Two days before my final treatment, I write myself a letter in my journal. Everything does not happen for a reason, but I can’t deny that I’ve found one anyway. It’s strange to mourn, in some part, at the end of this season of my life when it marks so much hope, when it’s what I’ve been wishing for for months. But it’s what I feel right now. I write:

I want you to remember after this that your fear and discomfort didn’t kill you. That you made it through each moment and each day for six months without reaching for alcohol. Sometimes without reaching for food or the remote or your phone. Sometimes it was scary and overwhelming, but there you were in it.

Before my cancer, I thought I was alone on an island and these were my only tools. When I crossed the bridge and everything was stripped away including all of my vices, my comforts, my beloved numbing agents, it was just me, my community, and life. Now that the haze has lifted—funny it was possible with so much brain fog from the chemo—I see that not only was it cocky to think I was alone when I’ve always been surrounded by community, but I always had the ability to do life without those things. If I could survive cancer and all of my thoughts of death and mortality while my body fought for its life, I can certainly bring that with me back across the bridge.

A couple of weeks after my last treatment, I get back into the garden. I love the slowness of it. How I can’t see anything happen in a day—well almost, maybe I can catch a flower at the moment of bloom or see it turn to face the sun if I’m very patient. It’s nearly impossible for me with my human sensibilities and pressures of time to perceive the growth, but I know it happens because when I compare one month to another there is a visible change.

It happens slowly both for me and for the earth. Yesterday, I trimmed the dead mums, cleared the leaves from the tulips which grow upwards today, and I will turn the dirt tomorrow. There’s no use in doing it all at once even if I could because the garden asks me to match her pace. I love that about her. There’s no rushing a masterpiece.

With each passing day, she and I go slowly, drawing out weeds with my gloved hands, creating edging to keep the grass from encroaching in, turning the soil, dropping small seeds into finger-placed holes, and sketching a design for what I’d like it to look like in a few months. We’re co-creators, my garden and I taking turns with colors, and shapes and timing. We’re cultivating a new landscape in which I sit back and feel more and more peace, but never done-ness.

The summer after treatments, I set my mind on making a patio for the backyard. We’ll do it ourselves and I’ve watched enough videos to have the unearned confidence of an expert. I’ve already roped off the area and dug out the dirt with a pickaxe and shovel, covered the earth with blankets of weed cover, and over the weekend, my partner, Patrick, and I added concrete sand.

This morning I use a metal rake to spread the sand out over the whole area. I step back for a photo. It’s pristine and I can’t stop myself from flipping through the images on my phone of each stage to see the progress multiple times a day. It’s the most satisfying flip book. Replaying the progress is the first thing I do in the morning and the last thing at night. The satisfaction of it, a high. The last step before the heavy pavers, I puzzle together light, black panels over the sand. They interlock perfectly though they don’t snap into place. The weight of the pavers will hold them down once they arrive. One more picture and I go back inside.

This evening, away from the house, a thunderstorm passes. It sends panels flying, whipping around the yard. When I get home, I see our neighbors and Patrick take the scattered metal patio furniture and put them on top of the panels that are still there to hold them down. They take the others that have flown off and try to reassemble them in the rain. All of my progress is scrambled, when everything looked so perfect.

Even though the cancer is gone, I get dizzy and weak often. Visiting Baltimore last week I had to sit down after we walked most of the way to dinner. Work made me flustered and everything moved so fast it made my heart palpitations heavy and solid in my chest. After feeling better and better, returning to some healthier version of myself on a steady incline, it all changed in a moment.

“I just want to be better already,” I tell Patrick.

Some days I see beauty in the fact that I’ve peaked over the edge, that my passport is stamped in the world of the sick, as

Suleika Jaouad

calls it. Other days, I wish I’d never been there. I wish I could be totally unaware of that place, delude myself into believing it doesn’t exist. Flip the images left to right to see nothing but progress. Knowing what I know now, I doubt there’s any linear path to “better.” All I can count on is more thunderstorms.

Cancer doesn’t end with the chemo bell or with the first clear scan or even the second or third. My body has muscle memory for the smell of alcohol pads wiping my port, the taste of popsicles, the rising fear seeing a test result notification on my health center app. There are some days I almost forget, but not many. There are some days I don’t think about the fact that I will have a final day here, but not many.

I cringe to say it’s a blessing, because that suggests it was all a gift, that it happened for a reason. I don’t believe that. I believe I made meaning out of chaos because that’s what I needed. What I’ve built for myself from that place and the deep knowledge that time is finite does make me see the world differently. On the good days, the colors are a little brighter, the edges of leaves more defined, the moments of my cat, Zèb, sitting on my lap or Patrick holding my hand linger. On the bad days, I convince myself I have other types of cancer reading something online and it consumes me for weeks. I have to remind myself I can’t just be screened for everything for no reason.

There will be no certainty here.

There never was.

At first I thought that meant there couldn’t be hope either. That hope was a temporary fallacy, something untrue we convince ourselves to make us feel better. That’s what I thought when I started writing my story to process it, to carry it back into the new world. I thought the meaning I had found in this experience was that we are always on unstable ground. I was all-in on the philosophy that hope and fear are brothers on opposite ends of a spectrum, neither based in reality, delusions that only hurt us with their expectations. I thought there was something beautiful and true about letting go of them and everything else. I still think there is.

What I didn’t expect in writing my story was to re-engage with the nature of hope—this time not as an adversary, but as a student. What does it have left to teach me? I’m only beginning to find out. What I do know is that it's lovely too. It can be brief as a sugar high or warm and filling like soup. Hope doesn’t last, that’s not its nature. But it’s a partner that comes into and out of our lives often unannounced.

I don’t know that I need it, necessarily. But I want it. Am I grasping for it? As I get further and further from my cancer, I know nothing is promised. If I had to be a student of anything over that year it was that—nothing is promised or guaranteed, there are real limitations to what we control. I know that and I know hope too. Just as I invite uncertainty inside when she stops by each day, I want hope too. I want to invite her over and make us a cake to share. I hope she might surprise me at my office and the doctor’s room and the grocery store. I know we can’t spend every day together and I know I have more to learn about both—letting go and holding hope gently. I will for however many days I have. Sometimes that thought fills me with dread, but less and less, today it fills me with something like hope.

What I’m loving right now:

Swept Away, a musical set to The Avett Brothers’ music playing in D.C. right now (fair warning, it’s about a ship wreck so it’s dark, but absolutely incredibly done)
American Symphony, which is about art and creativity, love, mortality, and life and is one of the best documentaries I’ve seen in ages centered around
Suleika Jaouad
and Jon Batiste’s love story and creative processes
A Murder at the End of the World on Hulu, this one really plays to one of the first books I loved in high school, And Then There Were None by Agatha Christie
In honor of Emily Dickinson’s birthday yesterday, her poem “There’s a certain slant of light—” which is the first line of the tattoo on my arm in her handwriting, and Adrian Blake Enscoe does a beautiful musical rendition here