Category: Healing

Known & Lesser-Known Stages of Covid in Our House: Everyday Magic, Day 1078

Known & Lesser-Known Stages of Covid in Our House: Everyday Magic, Day 1078

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The horizontal view from here

We managed to avoid getting Covid for almost three years, to the point that when that screaming hot pink line appeared on the test strip one late night, my first thought was that the test must be flawed. But the body overrules denial in most cases, and the strange but well-documented symptoms began their Dada-esque parade through my waking and greatly-increasing sleeping time with aplomb. Just lucid enough (we hope) to write this today, I wanted to share some of what we experienced in Covid-land with the caveat that we are highly lucky to have not fallen into the abyss of the intense suffering and terror of severe Covid.

Stage 1: Why is it so hot in here?

Stage 2: This is a weird-ass headache, and why it is in clinging to the backs of my eyeballs?

Stage 3: Why is it so cold in here?

Stage 4: Paxlovid negotiations with doctors on phones (mine caught me the prescription in five seconds, Ken’s didn’t).

Stage 5: Many hours of dreaming of new breakfast entries, particularly one involving French toast stuffed with artichokes, then wrapped in fried potatoes and topped with salsa.

Stage 6: Tissue-box emptying marathon aka why is half my face on fire?

Stage 7: Activate re-watching as many Call the Midwife episodes as necessary to forget my life and believe I’m bunking with nuns in east London is 1957. Come for Vanessa Redgrave’s voice-overs. Stay for the crumpets.

Stage 8: No one in the history of humankind could have ever felt this.

Stage 9: This is the essential human condition, surely the essential mammal and reptile condition too.

Stage 10: Fall back asleep and spend hours driving over suspension bridges with my dead father, who is uncharacteristically quiet and bemused.

Stage 11: Toddler tantrum stage or is it the collective unconscious throwing a hissy fit?

Stage 12: Obstacle course of trying to order groceries online when I can’t remember what a banana is.

Stage 13: Chicken soup rounds one, two, and three, descending into just grabbing random ingredients from fridge or pantry and tossing them into the Instapot.

Stage 14: Pissed off at the world and will never feel differently.

Stage 15: Is it still meditation if I’m alternating between a ragefest and sleep?

Stage 16: Snickerdoodles, even if I have to make them myself.

Stage 17: Is this moment truly better and actually pain-free or am I tripping on the combination of Paxlovid, Tylenol, and chicken soup made with god-knows-what?

Stage 18: Thanks to so many (although counting is beyond me) episodes of Call the Midwife, I can now deliver a breech baby. So if you’re in labor and the baby is coming out ass-first, call me. Oh, wait, I can’t leave the house because: Covid.

Stage 19: The state of all living beings, including house plants, especially house plants, is profound sadness with a touch of whimsy.

Stage 20: Why did folksinger Phil Ochs really kill himself in 1976, and why couldn’t I stop him even if I was just 16 at the time?

Stage 21: Is the metallic taste in my mouth from this Paxlovid turning me into a robot? And if so, what if I can’t obey the commands of my master?

Stage 22: Having taken a short break from Call the Midwife to finish Reservation Dogs, I must now lie on the couch and plot out Reservation Dogs‘ next season, which I’m sure involves a stowaway Big Foot who has self-esteem issues, a redwood forest on a hot day, more casual visits from the exasperated dead, and a whole lot of fried catfish in Oklahoma.

Stage 23: Bollywood movies or even small touches in movies (usually involving the wedding scene) may be the ultimate reality.

Stage 24: I can breathe freely again but I just realized we’re living our lives all wrong, and there’s no cure for it.

Stage 25: Ken googling the immanence of God while I’m googling when Ted Lasso’s next season will drop in between calling friends with Covid to ask if they’re also sad, confused, and doubting what life is all around (they are).

Stage 26: Walking to the mailbox (a 2-block walk over the hill) by myself without falling down.

Stage 27: Does crossing over into daylight savings time take away an hour of Covid, extend it later into the day, or neither?

Stage 28: I’m so in love with the world I could turn into downy woodpecker tapping on our deck railing. Does this mean I might test negative soon?

Stage 29: What if cats are actually in charge? Oh, wait, they are.

Boobs and Bravery on the Move: Everyday Magic, Day 1061

Boobs and Bravery on the Move: Everyday Magic, Day 1061

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It’s been a week of boobs and bravery on the move (and I don’t mean the supreme court, which I have other names for rather than slang for an often beloved part of our bodies), all as a consequence of me having had breast cancer and harboring the BRCA 1 genetic mutation. Part and parcel of unfortunately passing this genetic anomaly led us to Minneapolis this last week to support our daughter through her second breast cancer prevention surgery.

Natalie made the courageous decision to have a double mastectomy rather than face what’s likely more than a 90% chance of developing breast cancer. It’s been harrowing to watch her pain and fear while going through several cancer scares already (including one just before Thanksgiving when she had to wait a week after a biopsy to find out she was okay). What a brave 30-year-old she is for taking such a leap, entailed big surgery, subsequent pain and limited movement, six weeks of deep recovery, and now, four months later, a second surgery with much of the same although easier. Thanks to good genetic counseling and her own wise heart, not to mention what she witnessed me going through with multiple surgeries and aggressive chemo, she was able to make her own best informed decision.

She comes from a line of women spanning three generations who have also had to make such decisions. Five of us have had mastectomies, three of us because we had breast cancer (some more than once), and two to prevent getting such a diagnosis. It’s a strange legacy to be living, but here we are and here we’ve been, sometimes passing around our silicon boobs around at family visits to assess the weight and droop so that we can find what works best for us. We’ve also shared stories of the pump-you-up process of inflators followed by swapping those out for implants.

We fear for the next generation, not knowing who will end up with the cancer card in their genetic testing. For those of us who do possess that card, there’s screenings and blood work, careful monitoring of related cancer risks, and passing around whatever article we come across about new breakthroughs in surveillance and prevention.

Our bodies and psyches are geniuses are adaptation, something I know down to the bone. Not having breasts is truly no big deal to me anymore, 19 years after my double mastectomy. As wrote about in my memoir, The Sky Begins At My Feet, each morning I put on my glasses, when my prostheses, which spent the night cozily sleeping in my mastectomy bra. It’s not heroic or extraordinary, just the old normal.

Yet there are some unintended opportunities born of all this. Right before we left for the long drive up north, I got a new pair of prostheses in the mail and consequently mailed off my old pair to a young trans friend, who otherwise wouldn’t have any medical insurance to buy a good pair of expensive prostheses.

There’s also the strength and beauty I see in my daughter’s face, sitting up in her bed the day after surgery and the morning after being awake all night and sick as a dog from the meds (yes, this is a photo of her just then). There’s the deeper understanding of life and health, even for the fortunate with good medical insurance and loving support systems, as she walks outside with us, ten minutes up the block and around the corner as instructed by her surgeon. Each steps takes perseverance and a willingness to feel pain on her way to healing fully.

Each step and each choice sing of hard-won autonomy, a word that became even more precious and vivid to us the day after her surgery when the Supreme Court decision crashed so many of us into anguish. But when I look into Natalie’s face and the faces of so many of her generation, I see a fierce hope rising.

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

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

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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

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

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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 About Simone Biles: Everyday Magic, Day 1043

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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.