For the Love of Phil on the Day of the Dead: Everyday Magic, Day 1042

It’s not lost on me that it’s the Day of the Dead, when we remember and honor our departed beloveds (between Oct. 31-Nov. 2 this year). The veil is thinner during this time between worlds, dimensions, states of being, the spirit world and the world we seemingly inhabit. I’m thinking loud and often about a very recent departed dear one, Phil Brater, a phenomenal man who saved my life when I was a traumatized teen.

I was 15 when I met Phil, one of the leaders of the Temple Shaari Emeth youth group in Manalapan, New Jersey. The rabbi of our congregation, when I met with him at the urging of my father (freaked out that when he said he was suicidal, I said I was too) hooked me up with the youth group to give me more stability. It gave me much more: a sense of belonging, plus equal doses of sanity and humor, but most of all, it gave me Phil.

There’s an old Yiddish saying that we can survive anything if it’s part of a story, but to have a story really help us bring together the shards of our brokenness, we need someone to listen to it and help us see it in new lights and bigger perspectives. Phil was my witness, my confidant, my ad hoc therapist, and my spiritual advisor all in one.

In short order, Phil told me to come 30 minutes early each week to youth group so we could talk, and talk we did, usually sitting in a hallway, our backs leaning against the white-painted cinder block walls between kids’ classrooms. I would tell Phil of my parents’ long and damaging divorce, the price and pain of my rupture from most of my family, and what it was like living with a father who kicked or screamed at me most days. I shared what seemed like an endless well of sadness, insecurity, shame, and how I couldn’t see a way out of this.

Mostly he listened. Sometimes he held my hand or strategized with me about how to get through the next year, month, day. Always he told me that no child should have to go through what I was going through, caught in a maze of a mess so thick we could not see what to do to change things without exposing me to potentially more danger. But because of Phil, I had a way out I couldn’t see at time although I was desperate each week to sink to the ground in the dim hallway with him and start talking.

Having someone who truly verified each week that I wasn’t crazy, that things were indeed bad, and that I was strong, smart, and creative enough to survive this — even if believing that was a vast trick of suspended belief — helped me get strong, smart, and creative enough. He also praised whatever scrap of poetry I brought him and told me to keep writing no matter what, telling me that poetry was one of my best ways through all this.

Phil came by his genius for help and healing naturally, it seemed, and through his vocation as a guidance counselor at an all-girls’ school in New York City where most of the girls were navigating poverty, violence, and mental illness in themselves and their families. So he knew how to work with people like me and many others who were struggling, even in our middle-class suburban youth group. But mostly, he was innately gifted and inherently intelligent when it came to being wildly present with people in pain.

When I say “wildly,” I mean it. Phil (as well as his brother-in-law, who co-led the youth group) had a wicked sense of humor, and nothing was too disgusting or out of the pale for our youth group to fall out of our chairs laughing about. Phil also had a no-holds-barred high-pitched laugh and absolutely no self-consciousness about being himself. Through his fierce love of his wife and daughters, he also showed me what it meant to be a mensch and good family man.

Although we stayed in touch since that time through letters or phone calls, and occasionally a visit, I got to see him and actually co-present with him at the old temple in 2014. Fittingly, I was giving a reading from my novel, The Divorce Girl, a semi-autobiographical novel (the plot and some of the incidents were from my life but all the characters, including the main one — who was taller and smarter than me — were fictional). When I thanked Phil for all he did for me, then people started asking him questions as well as me, and soon he was standing next to me.

“How did you help her become a writer?” one person asked. Phil said, “You know, you just find out what someone is interested in and encourage them.” This was completely true, but the bigger story is that he showed me the power of telling our stories aloud and on the page.

Phil is the one who first shone the flashlight of good listening enough for me to see not just my way out but how writing and listening could be a way for others to find their own path. I credit him with helping me become a teacher and facilitator, and much of what I know of the power of such an encounter informed my development of Transformative Language Arts, a field that encourages people to make community and change through what we say and write.

When I hugged Phil goodbye seven years ago, I told him I would try to visit again. Although I very much wanted to, being so far away, then the distance magnified by the pandemic kept me of seeing him alive again. Another old temple pal let me know that he died October 27. I’m sad that he’s gone, and I especially wish his wonderful family all comforts and peace possible.

Phil’s life on this side of the veil is over, but my full circle time with him is so embedded in my heart that he will never be dead to me. And in case he can hear or read this (my idea of the afterlife would surely include a lot of reading), thank you, Phil, for getting me through the hardest three years of my life. Love in action like yours never dies.

Make Mine an MRI With a Side of Enya and a Rainbow for Dessert: Everyday Magic, Day 1060

Question: How many MRIs does it take a claustrophobe to relax?

Answer: When Brandon, the wonderful (re: tolerant) MRI tech asked I told him I’ve lost count. Nothing like tunnelling, sleeping, and freaking out at times through two bouts of cancer, plus having some greater risk of other cancers, to make that too many MRIs, Catscans, X-rays, blood tests, and other cancer wellness (as in, “if we find nothing, all is well”) to count.

Today was my annual MRI to make sure there’s no tiny pancreatic cancer cells hovering around the corner. While I’ve never had this cancer, it’s what killed my father and uncle, and it can also be tied to being BRCA1 positive (which I am, meaning I have a breast cancer genetic mutation). This MRI cross-bred with my quarterly scans to ensure I have nothing from the eye cancer I had traveling to other parts of the body.

As someone who used to be terrified of lots of scans, especially MRIs and anything where I’ve sent into a tube (I once visited the underworld during a Petscan), these are a deal for me, or at least they used to be. I’ve needed heavy sedation on a cocktail of you-are-somewhere-far-far-away drugs numerous times. Even then, according to my good friend Judy who once sang me Jewish prayers and Buddhist chants during one, I still kicked my legs wildly the whole time.

But when faced with the reality of many more scans in what I hope is a long and healthy life, I’ve been working on giving up my panic and dread. For the last few years, I’ve talked with my therapist about exposure therapy and how my life is giving me this in bundles when it comes to scans. What also helps is Enya.

I had almost forgotten how much I loved Enya’s music in bygone eras, but a few years ago, I was given the choice of listening to her or the Beatles during an MRI, and I chose Enya. It turns out that Enya provides the perfect antidote to the patterns of sonic booms and yelps sounding through me, which altogether feel like having my body energetically probed by some benevolent extraterrestrials.

Enya’s soaring harmonies and bell-clear voice winding around me during an MRI cradles me in an angelic choir, even as the machine loudly bellows and chimes its surveying of my torso. I listen to Enya as well as the machine’s pre-recorded female voice telling me to hold my breath for various intervals of 11-20 seconds, then breathe normally.

This MRI and my one last October were actually, unbelievably, pleasant. With my head on a pillow, my arms above my head resting on that pillow, and the slate I was on going in and out of the Easy Bake oven of the machine, I felt calm, at times almost happy, and so greatly relieved that I could do this without snapping into too-far-down-the-tracks-to-stop fight or flight mode. I also fantasized about exactly what I would order for breakfast at Wheatfields, where we go after each MRI, and how good that French toast and bacon would taste. And it helped having Ken there, breathing with me.

Back home after many hours in and around the hospital waiting for the good news that yes, all was clear and this was another Well Caryn visit after all, I watched the early evening sky brighten in the west while in the east, the dark clouds acted if they were holding a rainbow somewhere. I ran into the house and got Ken, a champion rainbow-whisperer, then we walked through the field south of our house rainbow-hunting until we found it, brightening over the 10 minutes we searched and even doubling.

It was only half a visible rainbow, but I’ll take that, and all the Enya music that comes my way with gratitude. I’ll even take the MRI, an adventure I would never have signed up for in advance but one that helps me relax in small spaces filled with sound, motion, and the wonders of medical technology that can save our lives.

Let’s Talk About Simone Biles: Everyday Magic, Day 1043

Let’s talk Simone Biles But first, let’s talk about two gymnasts we don’t know the names of: Elena Mukhina and Julissa Gomez

Elena Mukhina, a 20-year-old Soviet gymnast, broke her neck right before the 1980 Olympics when her coach pushed her to practice her balance beam routine although her broken leg hadn’t yet healed. Doing the now-banned Thomas salto move, she landed on her chin, and she was permanently paralyzed. She died from quadriplegia complications at the age of 46.

Julissa Gomez, a 15-year-old American rising star, a few months before the 1988 Olympics, was having a shaky time on the vault lately. Her coaches insisted she work through her difficulty with a particularly hard vault routine although some of her teammates later said it was clear it wasn’t safe for her to practice that day. Her foot slipped on the springboard and she ended up paralyzed from the neck down, only to later suffer severe brain damage, which put her into a coma. Her family surrounded her with care and love until she died in 1991.

Let’s talk about what it means to be unable to speak up, or to speak up but to be bullied into doing what you know isn’t right for you at the time. Dominique Moceanu, another American gymnast, who suffered a potentially devastating injury in 1996, tweeted in response to applaud Biles’ decision that she and her teammates never felt they had any say in their health.

Let’s think about how athletes are often heroized for working through the pain, competing with broken limbs or sprained joints, pushing themselves despite the likeliness of permanent injuries (and I can’t help thinking here about all the football and soccer players with brain injuries for life).

Let’s also talk about the unimaginable pressure not just of representing a country and the Olympics in a pandemic while carrying the weight of being deemed the greatest gymnast of all time, but also what it means to be a survivor. Matthew Norlander wrote for CBS sports that Biles “….has gone on record and said, sadly, that one of her motivating factors to continue competing was her celebrity and influence on USA Gymnastics. Had she opted to retire prior to these Olympics, Biles felt like USA Gymnastics would not be, as an organization, held as accountable as it should be for its disgraces against dozens of former gymnasts who were abused by former USA Gymnastics trainer Larry Nassar. Biles is the only active gymnast in USA Gymnastics who doubles as a survivor from the Nassar era, and she carries this with her every day she practices, competes, exists as a member of Team USA.” Biles was sexually assaulted by Nassar, a doctor who was supposed to be caring for her health and not damaging it, along with 367 other young women. She wrote in social media how it continually broke her heart to have to return to the same Olympics training facility where she was abused.

Let’s talk about growing up hungry and in the foster care system after being removed from a mother who fed the cat over her four children and how those children clung to each other to survive. Then, when Biles was six, she and her sister were adopted by her grandparents, who she came to call Mom and Dad, but her other sibs went to other family in Ohio. Biles started gymnastics that year and made her world debut in 2013 at age 16.

Let’s talk about love in action for your teammates. Biles is renowned for helping other gymnasts find what they need to succeed, including Jordan Chiles, who moved to Texas to train with Biles (and didn’t give up on her Olympics dream because of Biles). As Biles made clear when she stepped down from competing this week, she believed in her team and knew it was time for them to take the spotlight. Sunisa Lee, in winning the gold medal for the all-around competition, did just that.

Let’s talk about Biles’ brave imagination in continually redefining herself, even saying, “After hearing the brave stories of my friends and other survivors, I know that this horrific experience does not define. I am much more than this.”

Most of all, let’s talk about the powerful grace of Simone Biles’ courage to say no, and to not follow the millions of harsh lights and loud yells to risk her own life and mental health. Biles not only brought to the world four extremely difficult moves named for her but a legacy for athletes, women, women of color, and survivors of sexual abuse to write their own life stories in tune with their wisdom, to listen to what’s right for them and to tell us their truths.

Rematerializing After Being Beamed Up: Everyday Magic, Day 1036

Hello Minnie Mouse eye!

In the Star Trek shows and films, someone can yell out, with grave urgency or casual cheer, “Scotty, beam me up” then off they go. But when they land back in the ship after escaping the clutches of attacking lizard-headed creatures or the like, they often have a moment of looking just a little shaken up (except for Spock of course, who is almost always composed).

Every surgery I’ve been through for is akin to being rematerialized in a new place, perhaps in a way that humans might be if they could be transported through particle accelerators without dissolving or exploding in the process. Then again, surgery is like this: you go into a space transporter device made of anesthesia, then you wake up somewhere else changed in big or little ways. I’ve rematerialized over the years in various expeditions without breasts or with a radioactive disk inserted in my eye. Even after the small surgeries, like having scar tissue and a cataract removed last fall, I came to consciousness changed. I think this is true of eye surgeries especially because while eyes are small, what they see if humongous.

A week ago, I did a short stint in the transporter to have my eyelid sewn in a way that would allow me to finally open and keep open my right eye (the muscles were damaged in treatment for an ocular melanoma). It was a short ride in the transporter because, even through I was thankfully very numb during the procedure, the doctor needed me awake enough to open and close my eye repeatedly and keep looking down at my feet, a trick when lying down, but I’ve had a lot of practice with this over the last two years.

Then I was rolled back to the recovery room, sat up, and, with Ken’s help, put on my jacket and scarf. Then we were home, and as all the marvelous magic of the numbing meds wore away, I hurt but mitigated it with some over-the-counter meds. Then it was the next day, and as the week unfolded, I realized having a much more open eye meant I could see a lot more. But it also meant that I was shaken up in new ways, as if some of me was still in one place and the rest was here. During this full landing in one place, I was dizzy, nauseas, disoriented, eye-strained, and wiped out, which turned out not to be a good match for many Zoom coaching sessions while also working in Google Docs (thanks to my coachees who helpfully rescheduled with me for next week).

As I start to come out of this, rematerializing as a two-eyed seeing creature, there’s a lot to grapple with, namely that my right eye — surprise! because I couldn’t see this for so long — seems to be Minnie-Mouse-dilated, likely permanently (but I will find out more about that soon). This explains why this magic and challenged eye sees a much brighter and at times light-blasted world than my left eye. Of course, I’m also legally blind in this eye, which is a strange way of saying I can see with it but in the language of impressionist paintings.

But there’s mainly joy here in Mudville, especially as the nausea relents (thank you, candied ginger and time), of seeing a vaster scope, and when I look in the mirror, seeing both eyes open and learning their new recalibration dance of tracking together. One thing that continually dazzles me is how the eyes can innovate and reset themselves to find new ways to team up, very much like the heart as we go through another $%&#@# learning adventure.

As we find our way to the other side of the transport, all has the potential to wake us up to nuances and vistas of this world. I’m reminded of what Antoine de Saint-Exupéry writes in The Little Prince: “And now here is my secret, a very simple secret: It is only with the heart that one can see rightly; what is essential is invisible to the eye.” True that, but also, what becomes more visible to the eye can show the heart how to see.

A Visit to Scan Land: Everyday Magic, Day 1033

Why, yes, I’m drinking some iodine solution pre-scan. It just tastes like heavy water.

“I’m here for my monogram,” a silver-haired woman told the receptionist. “Yes, your mammogram,” the receptionist answered without missing a beat. Obviously, she had heard such variations before, and this is the way of Scan Land, where many — if not all of us — go every so often to make sure there’s nothing anxious or life-threatening growing, or growing too much, on our insides.

Yesterday, I returned to Scan Land for my quarterly CT scan or MRI to ensure that no micrometastases from my ocular melanoma were taking up residence in my liver or lungs. “How many of these have we done so far?” Ken asked me yesterday as we sat in the waiting room, me sipping the iodine water necessary for my CAT scan. I counted on my fingers: at least nine quarterly scans, and that doesn’t count the dozens of eye ultrasounds (amazing how you can get used to a tiny device moving back and forth on your eyeball) and another kind of scan that entails staring deep into a machine to watch the fires of Mordor.

I’ve made many excursions to Scan Land since 2002 when I was first diagnosed with breast cancer. Because I’m a carrier of the BRCA 1 genetic mutation (which increases risk for breast, ovarian, and other cancers) and because my dad and uncle died of pancreatic cancer, I was going annually for a CAT scan or MRI for years. With the scans related to the more recent cancer, if I could earn frequent flyer miles for all the hours I’ve spent in Scan Land, I could circle the globe.

To be honest, the scans aren’t painful, and because I’ve struggled with tight-spaces anxiety, they sure aren’t boring. But thanks to work with my therapist, meditation, medication, and if it’s a closed MRI, serious drugs, I’ve been able to get through them. That said, I’ve also experienced some of my worst panic attacks lying on a platform going in and out of a machine. I’ll never forget the 45-minute-long PET scan in a traveling scan-mobile parked outside the hospital which I hyperventilated and cried through before slowing my breath enough to see myself wandering a desert for a long night, searching for some sense of peace while reminding myself that this big, bad machine wasn’t going to hurt me.

I’ve worked through a lot of my scan issues, and yesterday, I did my first scan without any medication, and although I started to feel that rushing fight-or-flight sensation in my stomach, I remembered to breathe and listen to the song (Christina Perri’s “A Thousand Years” — even if it’s from a vampire movie) I always play on my ear buds. So now I’m mostly left with the end point for all who visit Scan Land: the results.

No matter what the results are, they are always extraordinary: good (thank heavens!), bad (Oh my God!) or ambiguous (Oh no!). We inhabits of the waiting rooms — before the scan and before the doctor’s visit to tell us the results — aren’t a cheery bunch for the most part, most of us somewhere between scared, hopeful, numb, resigned, sad, distracted, and freaked out. Waiting for the results is often the worst part of wrangling with cancer and other life-smashing illnesses.

Some doctors use the I’ll-call-you-if-it’s-fine-but-you-have-to-come-in-if-it’s-not approach, which makes for a terrifying drive to the doctor’s office, knowing bad news, possibly life-shortening, is about to assault us. Luckily, my oncologist has a better way: I have my scan in the morning, then go to her office at 1 p.m. no matter the results, which gives the worst of my imaginative capacities little time to get too riled up. Still, I usually have a twinge.

Then again, scans have saved my life more than once. A mammogram caught my breast cancer early enough that I could survive it. A constellation of eye and other scans led me to treatment in June of 2019 that so far (and continuing for many years to come, I hope, I hope, I hope) saved me. Yesterday was another clear scan, and once again I’m overwhelmingly grateful for my short trek in and out of this big donut-hole-shaped machine.

I remember years ago at my oncologist’s office seeing two women — one middle-aged and one older, a mother and daughter — walk in the door clutching each other and sobbing. They were sure they were there for bad news, and it was hard for them to answer the receptionist’s questions as she checked them in. Eventually, they were called back to meet with the doctor as was I. When I was checking out, they were too, and this time they were crying for a different reason. They had gotten good news, and they were so overcome with relief and joy that they couldn’t stop weeping. I had gotten good results too that day, a good day in Scan Land for us all.