It came again, this single day in April with its double whammy of cancerversaries: my initial diagnosis in 2013, brain metastases in 2015 (with lung mets that snuck in around September 2014). Eleven years with malignant melanoma in my life. Nine years with the creeping fear of brain tumors returning. My next scans aren’t for a couple of weeks. I could say I’m in that dodgy in-between phase that starts feeling heavier and heavier as scan day approaches, but to be honest, I don’t lose sleep over scans anymore. Scanxiety is in my rear view. At the risk of tempting fate, I just don’t feel I should worry. But it feels like a more informed nonchalance than the one I adopted in 2014, when I showed up ready to hear I was fine and got bad news.
What have I been up to? Working, mostly. But also, for the past few months, I’ve been taking a poetry workshop. My first one in about twenty years. It has been revelatory, difficult, and affirming to be in class with people from across the country, developing rapport and esprit de corps despite the great differences in our ages and lives, under the guidance of a marvelous poet and teacher (whom I just so happened to go to high school with, also).
I mean, I’m 52. I don’t have any illusions that I’ll make many waves in the poetry world. And the poetry world in the whole has been a pretty challenging and unwelcoming place since October 7. But I have really loved getting back into writing new poems, I feel empowered to revise old ones, and maybe I’ll finally break my unhelpful, longstanding moratorium on sending my work out to journals.
I have a new sense of how to get these things done, and it’s more about plugging away than intense bursts of creative energy. I am letting things marinate, sit around and age in my head a bit, before committing to paper. Hard for me to know if I’m learning something that comes naturally to other people, because what comes most naturally to me is seat-of-the-pants thinking and creating, usually under deadline.
And hey, it just so happens I have to write a ghazal by Thursday (in my defense, I have been thinking quite a bit about it). So enough navel gazing.
A Good Seven Years, by Thomas Hawk on Flickr, licensed under Creative Commons.
Here I stand. Today I turned 52. Seven years ago, this was a milestone that I decided was worthy of a plan. The plan that would last seven years and leave me transformed into a productive artist, an accomplished translator, a well-read and agile and lithe middle-aged woman. I’m still a middle-aged woman, anyhow.
It’s a very good thing that I realized somewhere around Year Three that planning has never been my strong suit. I think my poor skills at planning probably helped me when cancer struck three times in three years, because I didn’t need to spend any time mourning what I had been planning to do with those three years instead. Have another kid? We barely had room for two in our apartment in Brooklyn.
I think the moment I realized the Seven Year Plan wasn’t going to go well was when I began dreading writing a monthly check-in paragraph to let myself know how the plan was proceeding — that reminded me too much of work. Early on, I discovered that striking through text of my plans held some power, so part of the plan became modifying the plan. Still, in a world where nothing seems to go according to plan, my quaint effort met the end it would inevitably have found: obscurity. I think there was a notebook somewhere in which I was writing my plan updates. I have no idea which notebook it might be, in a home office landscape strewn with notebooks.
The impetus for the plan, way back when, was my admiration for a friend who had not only managed to pick up the pieces when a marriage ended, but also returned to a book project at a very propitious time for it. Dr. P was another person who inspired me, as she pursued her Columbia MBA on weekends, leading to where she is now: running the melanoma program she built herself at Weill-Cornell. At the time I thought it was what these women had done leading up to turning 52 which conferred their power.
What did I actually do in the past seven years? I had about 20 CT scans and 20 MRIs of my brain. I went through untold numbers of bottles of eye drops of different types. I moved from NYC to Maryland. I watched my kids grow into the enormous almost-men they are today (nearly 17 and 13) and watch them develop musical chops that far exceed any I ever possessed. I gave building a translation career my best try, ultimately deciding I was never going to earn more than a serious hobby might bring in. I doggedly pursued library work, enduring interview after interview, until at long last I found a library that was willing to accept me even though my resume had gaps, and even though I didn’t walk in the door knowing how to do the work. Now, just a year later, I am feeling more confident and competent in the job.
I can’t pinpoint anything I started doing in the past seven years that has made appreciable change in my life, career, or outlook. But I have begun to feel something like power that stems from deep competence. The way I can get an email at work, map out who and what needs to be done to address it, and suddenly find myself convening a meeting with five other people to start the ball rolling. The way I tend to panic when I’m helping plan a semester of adult education classes for my volunteer job, then sit down to list out the classes we have planned and realize we’re actually in better shape than I thought. I feel like I even cook differently, more confidently, when I get the chance to — being back at work has meant the burden has shifted more heavily onto J., who runs a business and somehow manages to cook dinner many more nights a week than he should.
Maybe I’m finally attaining what I had thought would be the product of seven years of dogged attention to productivity and the external metrics thereof. Maybe what this is all about is the solid feeling I get from doing things I have somehow learned to do by spending time on the planet that we scrape ourselves across every day to make our living, to prevent people from dying or even crying, to gather and to scatter and to dither and to matter. Meeting people and talking to them, making mistakes and more mistakes, ideally learning from some of them.
Signing off, because I’ve fallen asleep writing this about ten times, another benefit of my new 52-ness. Good night and good luck.
(Making Me Understand is an occasional blog feature where I analyze, in brief or at length, what a particular work of art or an artist means to me right now.)
I have been feeling less and less allegiance to this blog, because it has a major flaw: it’s about cancer. And so little of my life is actually about cancer anymore. I guess I should just lean harder into the name of this blog, I’ll Live. Living is what I’ve been doing all this time, after all, though some days it’s harder to really sense that. I don’t have that particular zest for life that someone who is closer to mortal danger has. That seven year plan I crowed about? It is about to end, less than a month to go. I think I abandoned doing anything with it somewhere around year four. I’m going to call it a rousing success, because to do otherwise is antithetical to the plan as I originally conceived of it. I have nearly made it to age 52, and I am apparently still learning not to berate myself for things that don’t work out.
(By the way, I had my scans. They were fine. They are always fine.)
It has been a month and change since our world was turned upside down early in the morning on the very last holiday of the Jewish holiday cycle which starts with Rosh Hashanah and ends with music and dancing and rejoicing as we come to the end of the Torah reading cycle and begin it again. On that joyful holiday this year, Hamas brutally attacked my people, murdering and raping and torturing and beheading them. 240 people were taken as hostages to Gaza, and most remain there, except for the ones who have since been found murdered and a very lucky handful who were rescued or returned. Babies, elderly people, every age in between. I don’t sleep very well at night from worrying about them. They watch over me while I am working.
When you’re gone, how can I even try to go on?
And then we learned what happens when our people suffer one of the most horrific large-scale attacks since the Shoah. It turns out that much of the world has maybe 3.5 days worth of empathy to give before it starts to forget what happened, before it preemptively starts forecasting the certain war crimes that the Jewish nation will visit on its neighbors, before vocabulary words are bandied about severed from their actual meanings, and before the accepted narrative of the events suddenly is as twisted and tortured and beheaded as the victims of Hamas were. I have lived my entire life watching this cycle play out in the media. I have not gotten used to it, and I have not stopped hoping this might be the time things play out differently.
Social media has been mostly a curse this month. I have shed “friends” right and left who disappointed and depressed me with their absolute certainty in victim blaming, with their acrobatic attempts to seem like they are caring people calling for a ceasefire but not for hostages to be returned, to seem like they are not garden variety antisemites. I work on a college campus, and every day has brought new, shameful ways that undergraduates test out new identities by parroting hate speech and even projecting it onto the walls of a library. Luckily I work in a professional school, where hateful rhetoric has not been openly shared. I have suspicions about some of my students, but I keep them to myself. I have started wearing a Magen David every day, however, because I need them to know where I stand. (I don’t necessarily present as Jewish.) Young J’s college application season has also been tinged by the war, as we examine events on various campuses and try to figure out where he would feel safe. He had been considering a gap year program in Israel before starting college. That is no longer on the table.
In the arts world, which I am tangentially connected to, writers and artists I formerly respected are signatories to hateful open letters. Poets who were formerly friendly have become strident and unyielding, unwilling to accept that their words might permanently damage relationships established over decades. I have tried to do what little I can to support Jewish writers who suddenly find themselves adrift or canceled in their writing communities. I hate that this has happened to them, just as much as I regret that they never saw it coming. (I began to see glimmers of it just after 9/11.)
My friends in Israel who felt fully committed to a peaceful resolution of the conflict were shaken to the core by October 7, one of them telling me that she literally couldn’t believe what she was hearing on the radio that morning. She was so sure it could never happen.
Speaking of the radio, for the first week or more after the attack, I couldn’t bring myself to listen to music. Music is a constant in my life, so I knew there was something wrong. A friend suggested listening to Israel’s army radio station, Galgalatz. This is a music station, and following October 7, it became a sort of memorial in radio, as listeners sent in their tributes to murdered family members and friends. The tributes were excruciating to listen to, but I couldn’t stop, because you never knew just what song you might hear. There was electronic music played in memory of young people killed at the music festival. There were classic Israeli songs. And then you’d hear Led Zeppelin or Guns n’ Roses or Metallica. A full spectrum of music, free-form memorial radio. I won’t soon forget it. Of course, the broadcast is periodically interrupted by rocket alerts, where towns and neighborhoods are announced, meaning people need to run for cover. It happens all day, every day. And then there are constant PSAs with instructions for what to do when there’s a rocket alert and you’re driving.
Gradually, as weeks went by, I started to feel more ready to listen to other music. Some of it was imposed on us: Young J is drumming for his school’s production of Mamma Mia! so we had to go check it out. I will admit not feeling thrilled beforehand about attending the performance. I like to think of myself as a discerning music listener, and ABBA is not a band in any sort of rotation in my life.
The show won us over, of course. The storyline was vapid, but the singers had so much talent and heart, and the band was superb (Young J works hard at the kit). Quite unexpectedly, I found myself in the grip of one song in particular, “SOS.”
No one is more surprised than I am that I haven’t been able to stop listening to this song for a week now. My music streaming app keeps strongly suggesting I listen to The Carpenters play “Please Mr. Postman” afterwards, but I keep insisting on this one track. I’m not ready to move on.
I just found this music video of it, which is hilariously amateur compared to what we’re used to seeing now. The women in the band aren’t perfect: one has a sneer she can’t quite conceal, one has a snaggle tooth. The lyrics are vapid beyond belief.
But their voices call out to me from the dead center of the 1970s. I was three years old when this song was released, and I’m quite sure I never heard it at home, because my parents played no pop music at all. I have come to realize that in the past month, I may have heard the song played on Galgalatz. In fact I’m sure of it.
ABBA never intended this to be a song for wartime. There’s something very International sounding about it, bringing to mind the Eurovision contest, which it turns out ABBA entered and won in 1974. Eurovision is also a contest that Israel, despite worldwide hatred, has managed to win four times. So listening to this track also transports me back in time to a world where Israel was not reviled the way it is in so many quarters today (vociferously and egregiously).
I’ve heard the song enough times to love it and mock it simultaneously. The rhymes are certainly facile. But the synthesizer and the harmonies operate on a level I am unable to explain. It makes me want to do karaoke, but not in a festive way. It makes me sing in the shower again, something I had stopped doing ages ago. When I’m walking into the building where I work, I need to remove my headphones and check myself before belting it out in the hallway.
Because it is a song about a broken heart, and my heart is definitely broken. It is a song crying out for help, and I need help. I am trying to understand how to go on. At work, some colleagues kindly ask whether I’d like to talk about it. I decline, because I’m not ready to break down on a regular basis at the office. It’s already hard enough to wade through the sadness to get my work done. I do, however, a few times a day, put my headphones back on and listen to this song. And I think of the hostages, freezing and starved and terrified in tunnels for over a month, and I think of ABBA, and my brain tries to put together some sort of complex extraction plan via pop music. Then the song ends and I realize that isn’t going to work. And I play it again.
(Making Me Understand is an occasional blog feature where I analyze, in brief or at length, what a particular work of art or an artist means to me right now.)
It doesn’t feel a day later than 5783, though.
Hello. It’s been a while. Maybe it sounds like I’m clearing my throat, but actually, it’s a cough. Also I keep sneezing. It turns out there actually are still ways to feel unwell that don’t respond to nasal swab tests. It’s a cold, or else allergies. It is Late Summer Crud, and Young A has it too.
Yesterday, Young J got home from school. It’s senior year for him, and although he has been at my former high school all of his years of high school, the last one is hitting me harder. He’s taking the same class I took senior year, AP English Literature, and I’m stunned to discover that there are some readings that are still in rotation 35 years later. Like this one:
(Eliot was born in St. Louis. So this accent is some kind of affectation, or else it was the standard way Poets read their Poems back then.)
As soon as Young J said he was reading that, I jumped straight onto YouTube in the hopes of finding this very recording, which my teacher, Mrs. Wilkerson, played for us so long ago. (On a record player, if memory serves.) Imagine hearing something and then, thirty-five years later, suddenly having it playing from a device that sits in your hand. At first I received it as I did back then, ready to ridicule Eliot’s accent. But I soon realized I couldn’t, because I was too busy reciting the lines I still remember to this day. The way it hit my ears and my consciousness back then was entirely different than the way it pierced my soul yesterday, all this time later. Because I had not then, and now have been, “a patient etherized upon a table.” I have spent restless nights, I have experienced the yellow fog. (I have not murdered.) And how much time, exactly, have I spent preparing a face to meet the faces that I have met? Long story short: I GET IT NOW. I was a mess by the time it was over. (My kids are used to the way art undoes me.)
The way the calendar worked out, we spent the weekend celebrating the New Year. That meant insane amounts of cooking, copious eating, then endless dishwashing. Hours spent at services. As we sat listening to prayers, a new prayer rose up from the bimah, one that our rabbi co-wrote with a former synagogue president who has been ill with lung cancer. It was beautiful and sad. I was impressed at the gratitude with which he addressed God, something I haven’t quite managed to express, ever since the year I spent Yom Kippur not at services, but at home, reflecting on the luck that had landed me in the province of the unwell for the second time. (That was the day this blog was born.)
Today, this same congregant announced he has entered hospice care, which is devastating and sad. At the same time, the number of people I need to keep tabs on and mention in my prayers for healing (I do still pray — for others) is getting so numerous I may need to make a written list. At least once a day I run through my mental roster of who to check in on, who is pre-op, who is post-op, what I might possibly say to them, who might be in the right place to take a joke. (I’m good at jokes.)
I have measured out my life in coffee spoons… / … So how should I presume?
What can I safely say to anyone? I’ve struggled mightily with this of late. My cancer survival comes bundled with a healthy helping of survivor guilt. Friends are quick to point out that there is no way I should feel guilty. But it’s hard to feel lucky when randomness reigns. There is no objective reason that I get to live and others afflicted with cancer do not enjoy the same privilege. Yes, my quality of life is slightly diminished by the eye problems that my medication caused, but I wouldn’t say it’s even remotely comparable. I’m not in fear for my life. It has been eight years since that was my state of being.
I have had conversations with the newly diagnosed and their loved ones which make me sick to think about now. I feel I was spreading false hope by the mere fact of testifying my reality, when my reality is that I’m an outlier, not any sort of yardstick. I feel I must measure my words now, attach disclaimers, be attorney-like in my language.
“That is not it at all, / That is not what I meant, at all.”
This line from “Prufrock” isn’t a bad thing to return to, at this time of year, when we need to undo any vows or oaths we have made (literally the opposite of New Year’s resolutions that we make on January 1). We are disentangling ourselves from messes we’ve made in the past year.
Where I may have spread false hope, I apologize. Where my survival reminds you that someone you loved didn’t survive, I don’t know that I apologize — because that in turn undoes my gratitude for surviving. It’s complicated.
What isn’t complicated: That you know that I also hurt for their absence or impending absence from your life. And that cancer is unfair. Come, we can be angry about it together.
Scans coming up on Friday. Scanxiety has arrived right on schedule. This morning on my way to work I reimmersed in the glorious gloom of “Spleen,” by Baudelaire (and its many translations). The weather hasn’t been very helpful this past week. But the forecast points towards sun, the hope is for another set of clear scans, and then Saturday is my 5K. Please contribute if you are able! Many thanks.
Ten years ago today I received a phone call from my dermatologist. He wasn’t calling to shoot the breeze. That phone call was my entry point to Cancerland. I remember getting up from my desk after the call, going to the front window that overlooked the street, seeing the Brooklyn trees starting to bloom, and thinking I might not see them bloom again. (Then I dialed J.)
And this was eight years ago. Getting good news about my lungs when my brain was full of tumors (but I didn’t find that out until the next day).
Like the specific pain of childbirth, the mind doesn’t want to let you remember every detail of medical ordeals. The fossil record of my stubbornness, however, is well documented here on the blog — like my insistence on keeping a lunch date and taking public transportation to the ER when I obviously had something very wrong with my brain. To read my account here, you’d think I mostly laughed my way through Stage 4.
I mean, I’d like to believe I did. But the flip side of the laughs is that I’ve spent a long time since the very intense two-plus years of active illness trying to wrap my head around it all. I should have died, but didn’t, and in the process I became some sort of poster child for immunotherapy and targeted therapy and gamma knife surgery. And every day that I wake up healthy, I add to the data. I express gratitude on a regular basis, and confess my deep survivor guilt with the same frequency.
It feels ungracious to disclose that my eyes, due to side effects from cancer medication I stopped taking over three years ago, are seriously messed up. The latest wrinkle being I can hardly make out text on a computer screen due to increased floaters and my new glasses prescription suddenly not doing much at all for me. Tomorrow I see my eye specialist again, the one who had to do a laser procedure on my secondary cataract a couple weeks ago — yes, turns out your repaired eye can grow a new cataract, but once that one is lasered, you’re supposed to be good to go. While we were out of town last week, though, a dramatic blood spot appeared in that eye. Turns out it was likely just trauma from the laser procedure and not anything urgent. Tomorrow, I’m going to insist to my doctor that the quality of my vision is impeding my ability to work. And we’ll just have to see where my eye specialist takes my concern, because he’s moving out of state at the end of this month…
I started the day with this song and its life-affirming walk down Portobello Road, sung by Caetano Veloso, back when he was exiled from his own country.
Later on, I joined a group of women for a hike. We’d been doing them during the pandemic and then sort of forgot about it. Today’s hike was a nice way to reconvene. We hiked on the other side of the Potomac River at Great Falls.
The calm before the rapids
After the calm section of river, things get rocky and ridiculous. While we stood at an overlook, I noticed the slow progress of a kayaker over rocks, holding their kayak aloft, preparing to get back into the water. We had to stick around to watch the marvel of someone navigating a terrifying stretch of rapids. It was impressive.
Better them than me
Something about watching someone defy death puts your own death-defying into perspective. (E.g. I seem to have beat cancer, so I don’t need to learn to kayak like that?) But along the trail there were a couple of sections that got rocky, and I found myself shaky and petrified at navigating them. So now I have my next thing to look into: is it my eye issues, my bad feet making me unstable, or some other kind of damage to my vestibular system caused by the gamma knife or the fact of having had cancer in my brain? What I’m not immediately worrying about, ironically, is cancer itself. My scans have decreased in frequency to every six months (I’m due for the next ones in early May), and I guess I just like sleeping through the night too much to let my brain start focusing on how this might possibly be something more serious. This type of thought experiment is not allowed.
Later in the afternoon, I attended a piano recital with my mom and Young A. Young A, who was three when this all started, and who just had a bar mitzvah not long ago. I could have missed that. I could have missed a world of things. Instead I got to sit in a concert hall with him and Mom (who turns 86 later this week) and enjoy a program of Schubert and Liszt. At dinnertime, I thought of drinking a toast with J. to my health. But we forgot. It’ll keep. There are many more cancerversaries to come, I have a feeling. I can pace myself.
Speaking of pacing myself, I’m running a 5K in early May to raise funds for the Melanoma Research Foundation. I haven’t done any running in quite some time, and although my knee was threatening to derail my training, I found a way to strengthen it and it isn’t hurting much anymore. If you’re able and haven’t done so already, would you consider kicking some funds over to MRF? Thank you!
I’ll be back in May (Melanoma Awareness Month) with a blog post I’m writing for work and with my scan results and maybe more random musings.
Today is my parents’ 61st wedding anniversary. But many crucial variables have been altered since that date. The anniversary falls in midwinter instead of midsummer (they married in the southern hemisphere), and one party to the partnership is now underground.
Still, it is a day to observe, and for my mother, to remember. The stories told about that day, and the photos, have become so much a part of family lore I can almost believe I was there. The reception, made infinitely more crowded because my journalist grandfather, feeling that he hadn’t been allowed to invite enough of his circle, printed up more invitations without bothering to tell anyone. The food ran out, and my great uncle was making sandwiches in the garage. The guitar used as a prop in photos. All the young men eager to be photographed with my beautiful aunt V. The photographer, who departed before midnight because he had a party to get to, leaving my father his camera.
Yesterday Mom and I took advantage of the good weather and visited the cemetery. As we arrived we saw a pair of geese walking around not far from Pa’s grave. We replaced the stones that had toppled off the top. We drove up the hill to visit my grandparents, and I also left a stone for the mother of a friend who was killed in a car crash when we were in eighth grade, because I recently discovered she is a neighbor of my grandparents.
And then, as is my custom whenever I visit Pa at the cemetery, we went to IKEA, which isn’t far away. Pa was a Swedophile in cinema, automobiles, and home furnishings, and the IKEA catalog always had pride of place in his home. He fully bought into their corporate ethos, and was their target demographic. He renovated three kitchens with their products, the last two perhaps the final great feats of engineering he accomplished before his gifts began to fail him.
I needed exactly one thing from IKEA yesterday, a frame for a print I want to hang in my new office. And Mom needed a cutting board. But you know how these things go. We started filling a cart. We checked out. And then we hit the food section, because Mom was coming for Shabbat dinner and we didn’t have anything for dessert. We bought an apple cake, also in homage to my dad, who appreciated the one on offer at the IKEA café.
How to mark this anniversary, then? I found a poem by Yehuda Amichai which may do the trick. Happy anniversary, Mom and Pa. ❤️
Anniversary of Love
Yehuda Amichai, translated by Assia Gutmann
Anniversary of love. A hymn from the forties. Letters like banners waving in the wind or folded in a cupboard. Bound up in our bundles.
“I live among orange groves, Ramatayim or Givat Haim, I live near the water tower. I draw from it great strength and great love, you will understand in years to come.”
The stalk releases its smell when you break it, leaves release their smell when you rub them thinly between your fingers. So will our love be, you will understand in years to come.
You will cross great distances, but you were never in the distance between my eyes and you never will be. You will understand. You will be in places with no orange groves, you will forget this love as you forgot the child’s voice you once had. You will understand in years to come.
I knew it was coming. Because of many extenuating circumstances, the day slipped by almost unnoticed. But I have arrived. I’m solidly in my fifties now. As I told a friend this morning, “I love the number 51. It’s so stealthy. Seems like it’s prime, but it isn’t. Kind of like me these days.” Har, har.
Ushering in this particular year means that the coming calendar year brings a significant milestone for me: in April, it will be ten years since my initial melanoma diagnosis. When I was diagnosed, in 2013, things were maybe looking better for patients, but it was still a very grim reality to face. As I progressed into lung metastases (2014) and the brain thing (2015), things got better and better in terms of the medicine. And they got better and better for me. I’m insanely lucky to still be alive, but it’s not an accident. It seems that the medicine is doing (or did do) precisely what was intended. I’m just waiting around for my type of response to treatment to catch up to everyone else.
I’m working in a medical school library now. It’s very exciting to think that the Next Big Thing in treatment could come from the mind of one of the students I’ll be working with. I haven’t yet settled on what I might want to say at work about my dealings with cancer. Anyone with the curiosity to do so can easily find their way to my blog, of course. But if I bring this up in my work context I need it to be for a reason, I need it to have some kind of educational value or be some way that medical practitioners in training can learn about working with their future patients. I’ll have to think about all that.
Off to work. Day 1 of the rest of my life.I have a cube.Keychain my brother made for me in shop. I mostly have used it for work keys. Now I have work keys.My first interlibrary loan request. I can honestly say I contributed to this paper, because I am one of the patients they’re writing about. (Dr. K, Dr. P, and Nurse Practitioner K are coauthors.)
There is a whole lot else going on but for now I’m going to wrap this up. My birthday dinner was co-opted for another purpose, so we’re having it tomorrow. I can say one thing: having a job is the best antidepressant I can think of. My self-esteem is no longer scraping bottom because I am not employed. I am not moping around the house. My commute is reasonable, I’m reading again while I’m on the train, and I’m getting more steps in every day. 51 is a quiet joy — at least for now.
(Making Me Understand is an occasional blog feature where I analyze, in brief or at length, what a particular work of art or an artist means to me right now. This edition is a roundup of a number of sources.)
More than a few things have happened since I last posted. First things first: For those who rely on my blog for scan results, my latest results are in. Nothing is amiss. All is well.
But there’s something else, too. After a long, long period of trying to find full-time employment, I have. I’m not sure yet whether I’ll be connecting my life here with my professional life, but I suppose the very curious can always Google and find me here. I’m in the honeymoon period at the moment, still waiting for HR to produce a start date. But it’s exciting knowing that I will finally have a chance to return to librarianship, a profession I had really started to miss (however, I’ll be engaging with it in an entirely new way), and contribute to the bottom line at home far more than my occasional freelance work has made possible. Which is pretty important, now that Young J, a high school junior, looks towards college!
The last time I returned to full-time employment was in February 2015. I had a good two and a half months in that job before nine metastatic tumors suddenly appeared in my brain and I quit the job because I didn’t yet know what the outcome of my treatment would be. Seven years later, I think I know what the outcome is — I’ve survived without active disease longer than a lot of other people in my same situation, for no particular reason that has yet been identified. But the concept of returning to work is bound up with what happened the last time I tried it. Mild PTSD rears its head. (Maybe it isn’t so mild?) I’ve been looking for ways to remain calm in spite of this new development. To disconnect myself from the thought that past events will certainly repeat themselves (even though that’s what seems to keep happening in the world at large).
I received two picture books in the mail recently that I’d been very much looking forward to, because the authors are friends I made long ago and far away, at the Bread Loaf Writers Conference. Nothing Special, by Desiree Cooper and illustrated by Bec Sloane, is situated in Coastal Virginia and is the tale of a grandson coming from the North to visit his grandparents and discovering a magical world of everyday pleasures. Mama’s Days, by Andi Diehn and illustrated by Ángeles Ruiz, tells a tale of maternal mental health from the perspective of a child.
Loving family connections depicted in different and unusual ways.
That these books come from two friends whose writing I have admired for a long time fills me with pride. The fact that they deal with topics at the forefront of my mind makes me even prouder. Desiree’s book brings us to a place where Black people are safe and enveloped in love and living their best lives. A place where racism, anxiety, menace, even commerce, hold no sway. We don’t get to see this world nearly enough in general, and certainly not in children’s books. Andi’s book (which it seems I received a bit early, as the pub date is December 1) puts us in the magical world created by a mother and child, in which a story involving dragons and castles ebbs and flows like the moods of the mother. The child is young enough not to truly understand what is afflicting her mother, but is wise enough to use storytelling as a tool to help navigate emotional turbulence.
What do these books have in common? The wonderful way they evoke, create, or restore a sense of emotional stillness and calm (calm it just so happens I was in great need of this week, when the report on my brain MRI from yesterday took much, much longer than usual to be posted on the portal — for administrative reasons, rather than any health concern). When I received Desiree’s book, I started digging through my influences to find other things that provide similar sensations. One possible visual analog came to mind: 3D illustrations (which were my immediate reaction to the cloth illustrations Bec Sloane created for Des’s book). My earliest favorite books included photographed 3D scenes — a peek at the copyright page of one book credits “Rose Art Studios” with the illustrations for this edition of Goldilocks that I loved so much as a toddler (and other books I have long lost track of):
The lenticular picture on the cover fascinated meI spent a long time in contemplation of this freeze frame
My fascination with these still scenes, constructed and photographed as though they were actually being lived in, continued through school, where I chose to make dioramas as often as I could for book reports. Part of me has never gotten past this point of fascination.
But stop motion animation has also long fascinated me, and I was delighted when my kids were younger and wanted to watch LEGO stop motion videos again and again on YouTube. In the right hands, the very toys the kids manipulated on the living room rug could come alive, tell stories, and make us laugh. During early COVID days, we tried our hands at making our own stop motion films. (My own entry in the genre is simultaneously pretentious and silly, but I think also has some heart.)
The other day I awoke to fog:
The stillness felt sacred. It also felt like a frame from an old movie from Russia, called Hedgehog in the Fog:
The fog makes everything mysterious. The hedgehog’s quest is minuscule in scale but the fog turns it into a heroic quest. The lack of CGI action sequences so common in today’s films makes the mood contemplative and soothing. Something made by human hands feels different. It makes us want to linger longer.
Another stop motion film I’ve thought about since seeing it this summer is Marcel the Shell with Shoes On. Marcel began as a character in YouTube short films that were produced a dozen years ago by a creative duo who has since split, but reunited to make a feature film with the same character. From the moment I met Marcel, he found his way into my heart. There’s something about his cracking voice (courtesy of Jenny Slate, voice actor extraordinaire) and his way of expressing himself. He reveals his fragility, humor, and the great effort it takes for him to be in the world. This helps him transcend mere twee-ness — in my estimation, anyway. (“Guess what I use as a pen?” he asks the cameraman. “A pen, but it takes the whole family.”) In the feature that was released this year, we learn that Marcel has lost a lot of his family members, and the film mockuments his quest to reunite with them.
One night this week, I found myself tuning in to a film I hadn’t watched in a long time: Ruby in Paradise, directed by Victor Nuñez. Ashley Judd’s Ruby escapes a troubled life in Tennessee after the death of her mother, and winds up in a Gulf Coast town in Florida, where she begins a new life.
Ashley Judd as Ruby
I first saw this movie when I had moved out on my own — not escaping, in my case, but aspiring. I took my first professional job in a Midwestern college town I’d hardly known anything about before moving there. My job was great, but the reality of living in a college town when I wasn’t in college soon set in. It was next to impossible to meet people and make friends, let alone date anyone. If you weren’t in class with students, they didn’t have much to do with you. So I spent a lot of time on my own, and my rent included cable TV, a luxury I’d never had before in my life. I must have caught this movie on the Sundance Channel. Although my life circumstances and Ruby’s barely intersected, I loved seeing another young woman navigate building a life for herself, a life far different from mine but no less deeply felt. Ruby sits at her kitchen table writing in a journal to sort things out. I also filled many journal pages in those years (but I refer to my journals from that period dismissively as my “angst logs”). As I get older and more encumbered with demands on my time and my mind, I find I miss the stillness of those days. (Also: To think that I thought I had actual troubles! I just want to laugh now at what I thought troubles were.) Looking back at Ruby this week was a way to look back at myself, and to inhabit the film’s stillness once again.
Here I still am, seven years removed from my last cancer crisis. My survival curve continues to defy many odds. I continue to minimize the way I suffered my cancer: only two nonconsecutive overnight hospital stays! Barely visible scars! No cognitive impairment from the gamma rays! But things changed for me. I slowed down. I got a bit sadder, but not clinically sad. The figurative weight has become actual weight. My eyes have borne the brunt of the side effects of the medications I can no longer take to keep me safe from another cancer onslaught. It’s possible I’m actually cured, but no one in a position to do so has ever offered me that word. So it’s business as usual, one foot in front of the other, my life lease renewed in six month increments. The path is muddy and overgrown. But when I am still, when I stop to look around? It can be beautiful.
Maybe you’ve read about me in the Washington Post? Everything I said is true. I don’t wish anyone the uncertainty I have been dealing with since I heard that my insurance company and my main source of medical care may break up. I thought they’d be together forever — but then, I feel like I’ve been hearing about lots of divorces lately.
Welcome to my cancer blog. It has been my lifeline at critical times. Posting has fallen off quite a bit since my life has been in less immediate danger. But some of the steroid-addled posts of 2014 and 2015 may amuse. (It makes me cringe a little to read them now, but I recall they were also pretty funny.)
I don’t have much more to add. If you’re possibly looking for a translator, hit me up. If you’re a Carefirst subscriber and Hopkins patient, good luck to you — hoping you have good options.
I'll Live 