No Comparison

During our recent trip to the beach, I found myself more than once getting caught up in comparative thinking. We had a lovely visit to Ocracoke Island, where we stayed in a house we particularly like for its large screened porch that overlooks the marsh across the road. Granted, the first week was chilly, with one full day given over to rain. But we added layers and walked on the beach anyway, and by the start of our second week, the wind had largely calmed, the weather warmed. We spent a couple of days parked under our sunshade, reading and relaxing with toes in the sand. I found several kinds of seashells I’d not found before, and we explored the beach at the northern tip of the island, which was new to us. We took in three gorgeous sunsets over the sound, ordered takeout from some of our favorite restaurants, spent an afternoon visiting our favorite shops and galleries, and napped generously.

Sounds wonderful, yes? It was, taken on its own terms. But it was hard not to compare this trip to previous ones. I missed being able to walk for miles on the beach without it utterly exhausting me. I missed wearing some of my favorite beach clothes that no longer fit over my swollen arm, and having the strength and mobility to kayak in the sound. I missed being able to fully enjoy the island restaurants’ delicious food because of my swallowing issues. Some of the losses are the result of the pandemic–we used to enjoy getting dressed up and going out to dinner, but we felt like that was still too risky. And some of the activities we’ve participated in, like the annual Fireman’s Ball and local ghost tours, were cancelled or discontinued because of covid.

Ocracoke sunset

“Comparisons are odious”–the phrase, according to the Oxford English Dictionary, has been in use since the mid-15th century, and has appeared in works by Cervantes, Christopher Marlowe, and John Donne. “Comparison is the thief of joy,” ascribed to Theodore Roosevelt, is another aphorism that cautions us against making comparisons. Yet research by social psychologists Summerville and Roese found that “more than 10% of daily thoughts involved making a comparison of some kind.”

Though it’s hard not to think back wistfully on good times–and I think necessary and important to grieve those losses–dwelling on previous trips robs the most recent of some of its joy. I grow envious of my past, more innocent self, the self who trusted her body, who took her basic health for granted, who never could have imagined an entire globe held in thrall to a virus. Lately I’ve also found myself more and more envious of people who (appear to) have their health, posting photos of themselves on social media hiking, running, working out. Do they know what a gift it is? Those who are casual about covid make me wonder. Of course, regardless of how active and healthy someone may appear online or elsewhere, I can’t really know what’s going on in their life unless they confide in me directly and intimately.

Pictures don’t tell the whole story–I look plenty healthy!

Which is why comparisons are odious, even dangerous. I’ve written before about what I call “diagnosis envy,” something I have experienced more than once. You hear about someone else’s diagnosis, and think, If I had to have breast cancer, why couldn’t mine have been a stage-1 tumor that only required a lumpectomy? Or, why couldn’t I have been diagnosed with something with a lower incidence of recurrence? There are some objective measures that might make one diagnosis “better” than another. Some cancers, like breast cancer, have more research dollars behind them and near-constant innovations in treatment. I myself have benefited from that. Most patients would, I imagine, prefer to be diagnosed with a cancer that can be cured, rather than only treated and managed. Some types of cancer, statistically, are deadlier than others.

But a “better” diagnosis doesn’t necessarily equate to an easier journey. The type and stage of cancer and the treatment options are only two factors that affect a patient’s experience. Someone without insurance or sufficient financial means to pay for treatment will endure additional stress, perhaps even bankruptcy. Many people have a limited or non-existent support network. Even proximity to treatment centers makes a difference–we only have to drive five minutes each way, whereas many patients commute two hours or more for each appointment. Knowing someone’s diagnosis doesn’t give me a full picture of what they are going through, so diagnosis envy is unhelpful.

Shell patterns, each beautiful in its own way

I was taken aback recently upon reading a social media post made by the parent of a teen survivor of brain cancer. Though the overall intent was good–to raise awareness about how life-saving interventions like radiation can have their own devastating consequences–one statement stopped me cold: “We’re talking about the brain here, folks…it’s not a bone or fat tissue.” The writer goes on to say that other cancers “can be” “devastating,” but the initial comparison is, well, odious. I know someone who lost her teenage son to bone cancer. And while I’m not certain as to whether “fat tissue” was meant to include breasts (breast cancer grows in ducts or lobes, not “fat”), I’ve witnessed too many women struggle with this disease to be comfortable hearing its challenges dismissed. I haven’t had brain cancer, or received treatment for it, so I won’t argue that it isn’t worse than what I’ve gone through–I don’t know. Nor do I know what it is like to endure cancer as a child. I can say this: neither suffering, nor dreams for the future, know an age.

No one wants to play in the suffering olympics, and god knows, no one wants to win. Comparisons are helpful only if they lead to greater compassion and empathy. I’m happier when I’m able to focus on the beauty that is now, and I believe it is always better to assume others need my kindness. After all, as Ram Dass says, we’re all just walking each other home.

New Treatment on the Horizon

Steve and I are wrapping up our time on Ocracoke Island. It’s been a good visit, a nice change of pace and place. Sun, sand, sea, and shells are always healing. It’s been a challenging visit in some ways, too, but that’s another post for another day. Today, some other news is foremost on my mind.

We’ve known for several weeks now, based on changes happening in my body, that Sasquatch is no longer working as well as it needs to. They call it “breaking through” when the cancer stops responding to a drug, and unfortunately, the rogue cells have broken through. That’s the bad news.

The good news is that we got the results back from a test to explore the likely effectiveness of an immunotherapy drug, and it looks really promising. A score of 10 or higher is considered good, and I scored over 50. So I’ll be starting a new treatment protocol with a combination of immunotherapy and chemotherapy next week. The original plan was to begin Monday at 8 am, but we’re still waiting on insurance authorization. Don’t ask me how I feel about insurance companies’ ability to interfere with treatment plans right now. The plan is to start as soon as we possibly can.

It’s a bit disconcerting to have Trodelvy stop working. But I keep thinking about, of all things, a caving trip I went on with my church youth group in the eighth grade. I was a little anxious that I’d experience claustrophobia, as I wasn’t fond of small spaces. But what I found was this: I was completely fine crawling, wriggling, and squeezing through the narrowest of passages, as long as I could see a way forward. The only time I panicked was when I came around a corner and the passageway appeared to dead-end in front of me. It was an optical illusion–the passage simply made a hard left, which I realized when I heard voices ahead and saw a brief flash of light from a headlamp. I made the turn, and I was back on track.

I realize there may come a time when we will have exhausted the alternatives, and I dread that possibility. But for now there is a way forward, so I’ll keep on pushing through the tight places. In the meantime, Steve and I are going to watch another sunset over the sound and look forward to cuddling our kitties again tomorrow evening. Onward!

Shell, Yeah!

Steve and I are on Ocracoke Island this week, one of the most beautiful beaches in the Outer Banks. It’s been a bit chilly, with stiff shore winds, so we’ve mostly been visiting the beach in short stints, clothed in long pants and jackets, walking rather than parking our chairs and hanging out for the day. I hope we’ll get some warmer temps soon, so we can lounge and linger.

The weather hasn’t really slowed my efforts at shell collecting. Despite the reservoirs of shells I have at home, gathered on previous beach trips, I am always on the hunt for the next treasure. When we were last here in September, it seemed like there were fewer whole shells to be found than in previous years, and some once common finds, like olives, were absent. I’d hoped that was a factor of fall ocean currents, but I’ve yet to see even a fragment of an olive on this trip. And once again, broken shells are abundant, intact finds fewer and farther between.

Two pretty moon snails

It’s tempting to see it as some kind of metaphor–my body, too, has felt a bit more broken with each visit. But I hope my ego isn’t so encompassing that I can only see the world as a reflection of my own state of being! The whole world has been muddling along this year, not just me. If there’s a metaphorical resonance in the limited numbers of good shell finds, perhaps it’s in the ways all of our experiential spheres have shrunk in the course of the pandemic.

It is interesting to think about how my approach to shelling has shifted over the years. When I was young, I was less discerning; I was also more impressed by ostentatious beauty. As I’ve grown older, I’ve gained a broader knowledge base. I know what I’m looking for; I appreciate novelty, but I also take pleasure in seeing and naming the familiar. I have greater appreciation for small beauties and subtle, intricate patterns, even as my eyes aren’t as sharp as they once were.

Baby’s ears and buttercup lucines are etched with delicate markings

My mother recently made me a beautiful journal that declares “My birthstone is a seashell.” Sometimes it certainly feels that way. I don’t think I’ll ever tire of wandering the shoreline in search of treasure. There’s always beauty to be found, if we only look for it.

Beach Duds

I’ve been having a reckoning with my wardrobe.

It’s not the first time. I’ve done the gain-5-10-15-pounds-and-lose-it-again thing several times, usually on the timeline of gaining in winter, losing over summer. I tend to gain around my belly and hips, so the springtime closet changeover often means pants and shorts are too tight, tops mostly okay.

This year’s reckoning has been a bit different.

It was precipitated by packing for a beach trip, typically a joyful enterprise. I adore the beach. The month I spent living on Sanibel Island, Florida, some ten years ago counts as one of the highlights of my life, and Steve promised in the wedding vows he wrote to deliver me to sun and sand at least once a year. Those who know me well know I love the beach as much or more than I love, well, my clothes. So it shouldn’t be a surprise that over the years I’ve amassed a small beach wardrobe. It includes bathing suits, of course, but other pieces too: a green vintage wrap skirt appliqued with a glass of lemonade I bought in a thrift store on Sanibel. A turquoise ombre silk tunic top with delicate embroidery that makes me think of ocean waters. A teal cotton polka-dot button down from Target I like to tie over a bikini top in the same color. Some of my beachy items have sentimental value, like the mint pleated dress Steve bought me an hour before he proposed–probably largely to get me out of the store and walking on the beach so he -could- propose. And then there’s the pink halter dress I bought on my first solo trip to Ocracoke that’s traveled with me on every beach trip since.

Discovering that a number of these pieces don’t work with my new body has been hard.

It’s not simply a matter of weight. With all my swallowing issues, I’ve actually lost weight overall, and my pants, for once, are if anything too big. The challenges are my swollen left arm, discoloration and disfigurement of my neck, chest, and shoulder, and the ulcerated patch of skin above my left breast. My sausage arm simply doesn’t fit into the sleeves of some of my faves, so that’s a complete dealbreaker. And anything with much of a v-neck either calls attention to the redness and lumpiness of my skin, or reveals my port on the right and/or the scabby ick on the left. I know I could still wear those pieces, but I feel exposed in them, and I don’t like seeing other people’s pity or discomfort when they look at me. More than that, I dislike seeing those markers of illness myself when I look in the mirror, and it’s hard to feel pretty and confident when they’re on display.

So it’s been depressing, realizing I have to part with some of my beach favorites. It’s also sobering to realize how much my body has changed since September 2020, our last trip to the shore.

And that’s where the real reckoning is, of course. It’s never really about the wardrobe, is it? It’s about our relationships to our bodies, our feelings about them, our acceptance of or resistance to their changes. For me, that process is ongoing. I keep hoping my arm will shrink down at least a little, that my skin will heal. Things might improve some, but I know my body will never be the same as it was before cancer, before surgery, before chemo and radiation. That’s hard to accept.

I know it doesn’t help, regularly looking in my closet and feeling sad about the things I can’t wear. So maybe I’ll take this as an opportunity to weed out anything that doesn’t make me feel fabulous. I’m learning the shapes and styles that do flatter my new body, and I have one new dress that–even with a v-neck–makes me feel smashing.

And, I suppose, I now have an excuse to go shopping. Steve will be thrilled. 🙂

Joy Journal 1: The Beach

It’s taken me a while to get to this project, which I’m calling my Joy Journal. The idea was inspired by an article, “Crafting Memory Cards,” in the July/August 2016 issue of Cloth-Paper-Scissors. Written by Susie Henderson, the article describes a set of “altered cards” she made to “curate [her] collection of losses.” Henderson used a set of playing cards that she altered with paint, fabric, charms, and other items to commemorate those she grieves. She then made a pocket journal to hold the cards.

Sample of Henderson's altered cards
One of Henderson’s altered cards

I decided to adapt Henderson’s project in a different direction. Though I am certainly facing my fair share of losses (and may at some point decide to commemorate those as well), I feel like it’s easy right now to get lost in the losses, and that it might be helpful to me to remind myself, instead, of all the things that bring me joy. I’ve been slow starting on this project, but I was spurred on to make progress this past week by a combination of events: my disappointment in the election, scheduling a definitive surgery date, and a consultation with my reconstructive surgeon, which just made the whole mastectomy thing that much more real. I needed a little joy.

Original title page of Francis' book
Original title page of Francis’ book

I’d already decided to use an altered book as my container, since I had the perfect one practically volunteer for the job. Back in the summer I’d ordered physician Gavin Francis’s Adventures in Human Being, subtitled “A Grand Tour from the Cranium to the Calcaneum.” Francis weaves science, philosophy, and literature with stories from his own experiences with patients to create a kind of “cartography” of the human body. The first copy sent to me was missing pages 19-52. I was sent an intact replacement copy, so I had the extra, incomplete book just sitting around. The title called out to be tweaked and re-purposed.

I looked up a couple YouTube tutorials on prepping a book for alteration, removed pages as directed to make space for adding my own journaling, and it was ready whenever I was. I gathered up paint, glue, washi tape, playing cards, and various other materials to see where they led me.

Gathering tools and supplies

It will not surprise anyone who knows or follows me that the first entry in my Joy Journal is The Beach.

Since I used an altered book as the container, my approach is a little different than Henderson’s. I focused as much on the book pages themselves as on the altered card.

I enjoyed letting the entry emerge organically and metamorphose over the course of a few days. I don’t claim to be a professional artist, but I think the entry captures much of what I love about the sea: sun and shells, blue waves and happy memories. I included photos from a couple of my beach trips, along with shells, an origami sun, and some of my favorite beach elements and colors. In case you can’t tell, that’s supposed to be a ghost crab in the lower right corner of the card! I love watching them skitter down the beach, and Steve and I once spent a lovely afternoon sitting in our beach chairs on Ocracoke Island, feeding the ghost crabs around us bits of pears and cheese. I have also known them to enjoy barbecue potato chips.

I worked a bit on the title page of the journal, too, as well as altering the book spine to reflect the new journal title. I still have some blank “front matter” pages to create, but I wanted to focus on getting my Beach entry done first. I’ll return to those elements later.

This project did bring me a smile. Wishing you a little extra joy this week, too!