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.
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.
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):
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.
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.
(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’m not going to reinvent the wheel. There have been enough gigabytes of text expressing the outrage we feel here in the United States about the disasters that Tr**p, that Toddler in Chief, wrought, both those disasters that were immediate and those delayed-action ones, like the recent spate of terrible Supreme Court decisions. I feel for Justice Jackson, just sworn in to a hostile work environment — an important and historic event that is now diminished by the downgrading of the institution she joined.
I am always turning to music at difficult times. It’s my coping mechanism. I didn’t expect this Robyn Hitchcock song to be the one I’d latch onto, however:
Serpent at the gates of wisdom Curling ’round a tree With your eyes so dark and empty Looking straight through me How did you get so unwinding? Do you know my sins? When you’re so close to the answer Why don’t you go in?
Serpent at the gates of wisdom Who did you deceive? She was weak, but that’s no reason For what you did to Eve You’re a fool, you broke the stillness She gave birth to desire Rolling down the frozen highway Like a burning tyre
Serpent at the gates of wisdom Where do you belong? Wisdom cannot be transmitted It keeps you hanging on Do you really serve the Devil If it’s all God’s plan? Good and evil need each other Honey I’m your man
Serpent at the gates of wisdom Like a purple scar Leering at me round the dashboard As I reach my car I close the door, I start the engine And I will take control God above, and all his angels Have mercy on your soul
It’s all in there, the hallmarks of a Robyn Hitchcock song: devotion to Bob Dylan, extended metaphor twisted into interesting and even unrecognizable directions, lapsing from Biblical discourse to an intentionally cliche pop singer trope (“Honey I’m your man”).
I’ve latched onto this song in the past week, and on reflection it’s no surprise at all. It meets the six-headed serpent of Supreme Court justices who would have America become a White Christian theocracy on their own turf: at the beginning of the Bible. There is no reason for what they’ve done to Eve, other than pure cruelty disguised as religious doctrine that then dons the carnival mask of judicial originalism — when the fact is that our Founding Fathers would recognize very little of the United States’ current reality.
I’m having a very hard time celebrating anything about this country as we approach July 4, because the feeling that shit needs to actually blow up is somehow not consistent with watching fireworks displays. I’m finding the last verse of this song particularly empowering, because it involves gaining the upper hand over evil, which is something I really need to feel is possible. And perhaps also because the last couplet carries the implicit threat of meeting an untimely end. I’m learning to play the song on the piano, and I’ve been singing the last verse pretty loud.
In a performance of this song in Italy in 2013, Robyn changed God’s pronoun to “her.” Thank you, Robyn, for all of it.
My scans were fine. Before anything else I should always tell you that. (What I might say in a quieter voice is that at this point, I am expecting them to be fine, and that might invoke the Evil Eye, and so forget I said anything. Ptuh, ptuh, ptuh.)
It was Mother’s Day and I was celebrated and it was lovely. There were pancakes. There were greeting cards. There was Mexican food. There was a chamber music concert to attend. In the evening, J and Young J went to serve at a soup kitchen with a group from our synagogue, so Young A and I hung out. We tried playing badminton but the wind blew over our net incessantly. So we took to the woods. It is not easy to get A out of the house. I appealed to the fact that it was Mother’s Day and he needed to do what I asked. The woods were lovely, we don’t visit them enough considering how close they are. There were white flowers everywhere, and then, suddenly, right by the trail, there was an uprooted tree with a huge rock embedded in its base (see Figure A).
I thought it was quartz. I sent the photo to a geologist friend when I got home, and she corrected me: it is feldspar. Being able to name it, I wanted it. Wanted to pry it loose from the dead tree and bring it home to rest in our garden. It had been a while since I felt this emphatic about anything (see previous post re: Lexapro, more on that in a moment), so I considered it a good sign. Something to not ignore.
The next evening, while J. played basketball and Young A had his bar mitzvah lesson, Young J and I took to the woods. We brought a flat screwdriver and a hand trowel. We managed to loosen a lot of dirt, but the rock wasn’t budging. We passed a clearing by the creek where there were about eight deer resting, frolicking, existing without human interruptions. I felt very fortunate to have such easy access to these woods.
It wasn’t until a day and a half later that I got back to the woods. Work intervened, and the quest for more work, and also driving children around. Yesterday, mid-morning, I texted my neighbor C to see if she’d come to the woods with me to see about that rock. J also happened to be available. So the three of us headed to the woods, C bringing her pickaxe. I had fallen down a rabbit hole on YouTube, watching videos by people who describe themselves using a word I hadn’t known, rockhounds. I learned many things that I didn’t particularly need to know, including what the best tools are and that you should always wear a reflective orange vest when rockhounding, because that way no one will ever question what you’re up to.
J took up the pickaxe and in a moment, he’d loosened the rock. Then there was the matter of getting it out of the woods. He hoisted it up on his shoulder and, with a few breaks, managed to get it to the trailhead. We all walked back home, and I brought the car to pick up our treasure. Now it’s sitting in the driveway awaiting a good spot for it in the flower bed. I’ll try to clean it with a combination of water, white vinegar, and dish soap, because that’s another thing YouTube taught me about rocks.
I’ve been feeling very low energy and having a hard time getting through the viscous liquid of days. Lexapro has evened out my emotions, but the cost appears to be motivation and creativity. I’m not enjoying this way of being. I feel estranged from myself. So I told my new doctor that I’d like to stop taking it. I’m currently tapering off it over the space of a week.
Today I went to see Dr. L for my followup appointment after my scans. All was well (but I already knew that). I was prepared with my big ask, which was to decrease the frequency of my scans to six months. It turned out to be not much of an ask at all! I won’t be scanned until November. Now the period between my lease renewals extends, from four to six months. I don’t think I’ll mind at all.
Also, Dr. L is working on setting up a new study of the ctDNA blood test I’ve been getting, and I qualify for the study. I’m excited to be a participant and give something back. I’ve been so fortunate, and hope this study will help future patients and survivors.
This Saturday I’ll be walking 5K around my neighborhood as a virtual participant in the Melanoma Research Foundation’s Miles for Melanoma fundraiser. I don’t like making a habit of hitting people up for money, but I know this is a good cause. If you are in a position to donate any amount, I’ll be so grateful. But even just your leaving a comment here will be a welcome sign that you’re here reading along after all this time… We’ve been through a whole lot together. (Almost as much as that chunk of feldspar and that fallen tree.)
I’ll admit that the image I was hoping to find was one of chocolate spread on bread. That’s probably more my speed these days. But who could resist this building being overtaken by flowers in spring? And its evocation of Venice and all that implies in the imagination (which is very different than the Venice of reality, I know).
It’s been a while. Many things have happened, including a ghastly and unending war in Ukraine, while in the larger scheme few things have happened. Most recently, we celebrated Passover. And just as the holiday began, I marked (or did I celebrate?) a double cancerversary: April 16 is the day my original sentence of malignant melanoma was handed down in 2013. It is also the day my brain tumors were discovered in 2015. I continue to be here, tumor-free (let’s hope — scans coming up next week). And with slight modifications to my person. There’s a slight scar on my chin now, the product of a bad fall I took at the beginning of a solo trip to Italy in February, a trip which now seems like a dream — and not only because my phone died, taking with it all of my un-backed up photos dating back to last June. My eyeglasses broke in that fall and when I got home, they were miraculously mended, something the optician in Italy didn’t think possible.
My glasses are now the source of some discomfort because they are no longer the right prescription for me. At the beginning of April, I had cataract surgery. I formed a precocious cataract at age 50 because of the ongoing inflammation caused by my targeted therapies (which I’ve now been off of for two years). Dealing with the inflammation required long stretches of prednisone eye drops, and those caused me to develop a cataract.
I was apprehensive about the surgery — I mean, it’s one of the most commonly performed types of surgery and folks much older than me sail through it all the time (including my own mother, last fall). But I am far too familiar with this scene from Un Chien Andalou (strong content warning) and desperately wished, as we drove over an hour to the surgery center, that I had never seen the film. My experience was absolutely fine, the anesthesia did its job and the nurses were wonderful. I even remember what the surgery looked like (but luckily not what it felt like): the process of the clouded lens being removed was like a psychedelic 3D light show. And then the new lens was placed and immediately I could see clearly again, without feeling like someone had rubbed Vaseline over my eye.
And so it begins, the slow process of replacing the parts that go bad. I remember how proud my father was of his two implanted devices (one, a stimulator that interrupted pain signals; the other, a pacemaker) that made him a bionic man. Of course, those devices made it more difficult for him to get the MRIs he needed towards the end of his life, so those devices turned out to be mixed blessings. Now that I’ve had one part replaced, I’m no longer dreading this process, but I do hope I can avoid any metal implants.
In a slightly more metaphorical sense, I’ve done some work towards replacing bad feelings. I started taking Lexapro at the end of March. I started slow, cutting the pill in half. I was only meant to do it for a week, but I extended that period, because I was also on a short course of oral prednisone around the time of my cataract surgery (another tip of the hat towards my outlier status, this was recommended to prevent any kind of inflammatory flareup, and it seems to have worked). The prednisone dosage wasn’t particularly high and I wasn’t as jumpy as I’d been on steroids in the past, but I wanted to perceive the effects of the antidepressant independently from the magical overachievement pill that is prednisone.
So I’ve been on Lexapro for a couple weeks now. And its main effect is that I’ve generally become an easily spreadable product, more like smooth peanut butter than chunky. I’m not getting stuck as often. I’m not getting angry as often. I’m not beating myself up as badly. My doctor, of course, suggested that I try therapy as well. I am still not so sure about that piece — I feel sure I was really just in need of a chemical boost. It also turned out I was quite Vitamin D deficient, so I’m working on that, as well as lowering my cholesterol via oatmeal. It appears that I will get to stay on this planet for a while, so it’s time to refocus my energy on proper maintenance. (I am still not quite back to getting regular exercise.)
At the end of March, melanoma took away someone I’d met on social media. Miles was a much beloved creative person, and a close friend to hundreds. He was able to make his exit on his terms, in his own home, with loved ones by his side. I’m sorry that the available treatments weren’t enough to save him from the beast. I am glad I got to know him a little bit.
I’ll try to remember to post next week’s scan results on the About page, as I’ve been doing for years. I’ve been a poor blog poster but I’m not going to beat myself up about it. Life constantly intervenes, and I am grateful for that.
We’re about to finish the calendar. I tend to reject the imperative to take stock of myself at this time of year, since I prefer to do that in the autumn when the Jewish new year rolls around, with its generous ten days to reflect (between the start of the year and the confirmation that you get to see it through).
We aren’t up to very much over this holiday break. We were supposed to be traveling in Israel, a family trip that the pandemic has canceled twice now. Instead, we’re home and the sudden appearance of the omicron variant has us recalibrating again. At this point it seems clear we’ll all get covid. It would be nice to wait until the omega variant, which we can only hope is even weaker than omicron. I’ve decided to book a solo trip to Italy for February, to attend a wedding. I am hopeful it will be able to go on as planned.
I heard from a friend, D., whom I hadn’t seen in well over thirty years (except on social media). She was going to be in our area visiting with her family, so we made tentative plans to meet up. This weekend, the plans became less tentative. They were going to be hiking at a park very close to us, so it seemed like the perfect opportunity to a) meet up with D. (and her husband, whom I hadn’t met in person and who has been through some considerable medical ordeals of late) and b) interrupt the kids’ sedentary lifestyle and suggest to them that they don’t need to be Indoor Kids forever. It helped that the weather here reached over 60 degrees over the weekend.
D., her husband and son, and extended family were planning to hike on a trail I’d heard about but wasn’t quite sure I was up for. I figured I’d start the hike and see how it went and bail out early if necessary. I received a pair of fancy collapsible hiking poles for my birthday, and was keen to try them out. The poles and my hiking pants (and a pack with a few snacks and one bottle of water for the four of us) were the extent of our preparation for the hike. I do not own hiking shoes, so I wore running shoes (which have been proving a poor substitute for hikers for some time now).
Did I mention that I’d also taken a rapid covid test, since I had some cold symptoms the night before? The test was negative, and I didn’t actually feel sick, but my doubts lingered. It felt like I was doing not just one wrong thing, but a series of wrong things.
I didn’t want to let D’s husband down though. I knew he’d read some of my blog posts during his own ordeal (which also included steroids and gamma knife surgery) and that he very much wanted to meet me. I’ve been following his own story, and felt the same. I just wasn’t sure about the hike.
We met up, hugged (masked), and set out for the trail. I took out my hiking poles and set to figuring out how best to use them. It wasn’t intuitive. I probably should have watched a YouTube video. (How did we ever accomplish any new thing, before we could see it done perfectly on YouTube?) I decided to treat the poles as extra limbs and use them for support when I was climbing between rocks. I started to feel less awkward and like maybe I was getting the hang of it.
And then we got to a section of the trail where the poles would be useless. I folded them up. It was just about an hour of pure climbing, not many dirt paths. Some of the trail was near the edge of a cliff overlooking the Potomac River. I panicked a few times. I was still wearing my mask, but eventually gave it up. Did I forget to mention that my cataract has gotten worse, and I can’t see very well from that eye because of the blurring and the glare?
I remember a similar situation a number of years ago. It was November 2015, shortly after my second gamma knife surgery (which was the final Dramatic Event of my active phase of cancer treatment). We were visiting my family for Thanksgiving and took a day trip to Shenandoah National Park. We set out on a hike that didn’t seem challenging, but eventually involved scrambling on rocks to access the view, which really wasn’t to be missed. I remember feeling the same degree of panic then. I wasn’t prepared, I felt stuck at various points, and I have no idea how I got through it. There are photos that show me trying to smile, but I remember my cold sweat.
Today I was multiply challenged, not only by my mask and bad footwear and poor eyesight. D’s husband had declared that hiking this trail was a bucket list item for him. This sent me into a reflection about my own trajectory from illness. I knew exactly where he was along his trajectory: the place where you can’t quite believe what you lived through. It makes everything urgent and exciting! You are alive and there are things that can’t be put off any longer!
There is absolutely no problem with this approach. It got me through a grueling 25 mile bike ride a year after my brain tumor diagnosis, after all. I get it. I’ve absolutely been there. My problem today was facing someone who feels this way about life — emphatic about living it actively, not putting things off any longer — and realizing how far away I’ve gotten from that feeling myself. It’s not that I am no longer grateful — it’s that I got tired. Old. Out of shape.
I managed to lurch over the rocks and then climb a rock face that almost undid me, especially a point mid-climb where I needed to power through and suddenly felt only weak and incapable. J. helped me. Once we were up, I bailed out of the trail at the earliest opportunity, joined by Young A, who never, ever misses a chance to do less exercise. We sat on a bench for a while. I was dismayed to see that we’d only walked 1.5 miles total. It was almost all up and down.
Walking back to the parking lot after the hike, I was catching up with D. about what’s been happening in her life. She mentioned that when she was dealing with terrible pain from a herniated disc a number of years ago, she reminded herself that her troubles were not so big compared to mine. That made me feel awful, because at this remove from my own suffering (such as it was, which as I recall it now was definitely not on the order of herniated disc pain), I certainly wasn’t prepared to hear that anyone would qualify, or minimize, or discount, their own suffering because of a perception that mine was greater. Earlier, I had asked her husband to guess how many nights I’d spent in the hospital during my cancer. (He’d had to spend a lot of time in the hospital.) He guessed 75. I felt terrible telling him the truth: only two. Once when my lung collapsed, another right after they found my brain tumors. I had outpatient cancer. I got off easy. What the hell was I complaining about back then?! I guess I should go back and reread my posts here, because I don’t feel full of empathy for the person I was back then. In fact, I barely remember her.
It took a little while before I stopped being teary and feeling defeated after I bailed on the hike. I sat on a bench with Young A and looked at the water on the canal, calm and untroubled glass. A few raindrops fell. People walked by with adorable dogs. We chatted. We wondered how long the others would be. Young A went looking for them, stayed away a while, then returned. It got colder. I tried to feel happy we’d come out for a hike, but my body was bruised and broken, and my ego was definitely shattered.
When we got home from the hike, and I finally took a restorative shower, this song popped into my head.
Restless eyes close, maybe it'll go away Please rest tomorrow, bring a satisfying day The restless urge of love that's worth the burning for Surely it's that one comfort love to give you more
Any thought could be the beginning of the brand new tangled web you're spinning Anyone could be a brand new love Any tie that holds can be broken, tear your bitter world to the open Anyone could be a brand new love
You won't be the first, your twisted change is normal gossip dirt Whispered to the nodding head Thrilled you fell apart, instead of them But they will Cause any hope for love can be killed If you need a different face, it's definite time to destroy this place
Any thought could be the beginning of the brand new tangled web you're spinning Anyone could be a brand new love Follow what you feel, you alone decide what's real Anyone could be a brand new love
The song embodies the duality of Sebadoh’s work, which attracted me to the band initially: sensitive lyrics accompanied by music by turns soothing and angry and angular. The lyrics to this song have previously suggested to me a cop-out, a guy making excuses, someone trying hard to cover their tracks.
But not today. Perhaps it’s the influence of the memoir I’ve been reading (Ladyparts by Deborah Copaken), which narrates a life in surgeries and heartbreak and lost jobs — and the long, torturous process of coming into one’s own, alongside the near-impossibility of being a woman who can find meaningful and fairly compensated work in the U.S., and most of all, affordable healthcare. Perhaps it’s that I spent the entire hike indulging in the act of self-loathing, an act I’ve become exceedingly good at.
I need a brand new love. And that new love needs to be none other than myself. I have wasted years, years I am lucky to have had, torturing myself in secret and in public for the many things I am not, the things I have not done, the things I cannot or will never do. I am overdue for a breakup with that feeling, and now I have an anthem for it.
A letter I wrote last night to a most exceptional nurse practitioner and friend, Kathleen Madden of NYU. She is part of the amazing team that helped make it possible for me to reach the age I have today.
I hope 2021 has gone well for you. Although my year began with a Crohn’s diagnosis and is ending with the certainty that I’ll need to undergo cataract surgery in the new year, I really can’t complain. I can’t complain because I get to still be here. Tomorrow, December 13, I turn fifty years old. (Sometimes it is good to have a late birthday, and watch your peers get old before you do!)
It wasn’t a given that I’d get to see fifty when I was diagnosed with melanoma at age 41. And it was through unbelievable good luck, which included being referred to NYU to the care of incredible people like you, that I am still here.
While I seem to have reached the more permanent phase of survivorship these days, I will never stop being nostalgic for the days when I got to come in and see you and discuss life, the universe, and everything (and most especially Generation X). Those visits, full of truth and hugs and plenty of laughter, were the brightest spots of a terrifying and unsettling time of my life. Thank you for meeting me there and reassuring me things would be okay. They have been.
From the bottom of my heart, thank you. Happy holidays and all good wishes for you and yours for 2022.
(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 certainly seems to be the week for it, so I’m going to blame Mark Zuckerberg for the way I’m feeling right now. No, the Facebook outage did not depress me (in fact, it prompted a friend and I to commit to “Zuckerberg-free Mondays,” which start next week). Nor did news of the evil behind the scenes at Facebook particularly surprise me.
Instead, I am laid low because a musician whose work I have loved for most of my life died suddenly this week. That news alone would have been enough to put me in the dumps. But because of Zuckerberg’s infernal machine, I not only heard about his death — I had been able to connect with him as a Facebook friend a few years ago. I only managed to see his band perform live once. But suddenly, Pat Fish was among my friends on Facebook, right there alongside my mother and my preschool classmates and my online pals.
This was exciting, because now I could tag him whenever I posted a song of his that I appreciated. So I did, not expecting much response, but often being pleasantly surprised to get one:
I’d loved the different iterations of Pat’s band, which was called the Jazz Butcher or the Jazz Butcher Conspiracy, depending on the release, since hearing a song of theirs on the radio in high school. The track, “Hungarian Love Song,” made you want to dance, but not the way people danced in clubs. It made you want to learn a form of dance you’d never even seen before. The lyrics cheekily described a love affair leading to cannibalism. My teen self, ever alert to quirkiness, responded immediately, and I set out in search of the album the song appeared on. It was never easy to find Jazz Butcher releases, and that’s the only one I have on vinyl.
As I delved deeper into the Jazz Butcher’s oeuvre, I found a band with multiple personalities, my favorite kind. They could rock hard but also were liable to charm the pants off you. There was a good deal of saxophone, but it wasn’t deployed in a cringey 1980s way. In college, finding out that someone I was interested in owned a Jazz Butcher cassette raised my interest in them immeasurably (whether deserved or not). There seemed to be a Jazz Butcher song for every mood I had. Like one, simple on its surface, sung from the perspective of penguins (“We are penguins./Only penguins./We are flightless./We are standing in the snow/Without food./`Coz we’re penguins/It’s what we do./On the ice floe of unknowing./And it’s freezing…”) that disarms you with its poignancy. Danceable numbers like “She’s On Drugs,” narrating a woman in the midst of collapse with ranginess and humor — but remaining ever the gentleman. There are lots of angels in the songs. And there is Shirley MacLaine. This music has accompanied me through adolescence, college, and my first experiences with independent living, heartbreak, ambition, relationships… all of it.
J. recently got us a turntable, after many years of living without one, and I cued my one Jazz Butcher album up just the other day. As I just wrote to a friend who is also mourning Pat, “I miss all of it. I miss the world how it was, where you would put a record on and just sit there listening to it. It wasn’t a backdrop. It is astonishingly hard to find the time for that now.”
The same weekend that I listened to this album for the first time in ages, Pat was to planning to play a live set on Facebook from his living room, which he dubbed Fishy Mansions. I’d put it on my calendar, and planned to tune in to hear him for the first time since he’d done a similar gig during early pandemic times. I knew the band had recently recorded an album and was hoping he might preview a track from it. Instead, Pat came on to say he hadn’t slept the night before, that he’d had sleep apnea, and he was sorry, but he wouldn’t be able to play for us. He was sipping a pint, as always, and cuddling his black cat, Raoul, as always. He seemed to be in some respiratory distress, though. I was unnerved, because a couple of years ago, he’d been treated for cancer. I identified with him on that level, as well — we’d both emerged from cancer.
Since I added Pat as a friend on Facebook, I got to know him a little bit. The first thing to know was that he was a huge fan of cats. In reading posthumous tributes, I’ve lost count of the number of people who have mentioned that he wrote them to wish their cat a happy birthday, or commented on a cat photo they’d posted.
I didn’t post any cat photos. All the same, I unexpectedly found myself on the receiving end of unsolicited reactions and comments on my posts from Pat. Supportive ones when I posted about being a cancer survivor. But other things too:
All of a sudden, Pat was not just the source of music that had formed the soundtrack of my adult life. He felt more like a friend, one who knew how to contribute in just the right ways on social media. And Tuesday morning, I opened up Facebook to learn he was gone — suddenly, peacefully, but gone. I won’t have any more opportunities to convey my appreciation for what his music meant. I won’t get to watch him play another live gig from his living room, cat jumping in and out of frame.
A close friend of his posted to a forum today:
He was very happy over the last few months of his life, probably more so than I’d seen him in a long time, and it was mainly down to you lot. He was absolutely knocked out by your response to the “Live At Fishy Mansions” sessions. He was pretty much broke before he started doing them but everyone’s generosity with the tip jar meant that his financial problems were solved – the money from it kept him in food (not that he ate much!), beer, smokables, and beefy biscuits for Raoul.
So there is that: We, his fans, had helped him to not die destitute or in despair. It should feel like enough, to know that an artist who gave you so much felt acknowledged and tangibly appreciated at the end. But — all because of Zuckerberg — he was not just an artist to me. He was MY FRIEND. And he is gone when he should be here to receive the torrents of adulation that a dead artist gets.
Another celebrity I follow on Facebook (but who is not a friend), legendary illustrator Sandra Boynton, posted this photo yesterday, which she took in her office as the sun set:
Sandra, I promise, I will absolutely try. But it will take a while to get over this one. Rest well, Pat.