Finding the key on our purple (made in Lawrence) piano
Last night, I found that my tinnitus buzzes and hums in the key of G. How did I find this? By singing in key with the tinnitus while pressing piano keys.
Making music out of misfortune is sometimes the order of the day, especially when I’m encased in a cocoon of hearing the workings of my own brain. That’s somewhat what tinnitus is, according to this succinct and brilliant video with Marc Fagelson, who says, “Experiencing tinnitus is like eavesdropping on your brain talking to itself although it may not be a conversation you want to hear.”
Then again, those of us (something like one in seven) with tinnitus don’t have much of a choice. How I got here wasn’t exactly by choice either, but rather a Rube Goldberg (no relation, just resonance) contraption of events. Over the last six months I’ve been immersed in the sport of extreme dentistry because the radiation treatment for my ocular melanoma wreaked havoc on my teeth. With upwards of 20 cavities, including many under caps, I’ve had close to 20 visits to the dentist, oral surgeon and endodontist. Almost all included drilling in various pitches, and yes, it turns out dental drilling can cause or worsen tinnitus (no, earplugs won’t help because the drilling is happening inside the head)
I’ve been running my own science experiment in my brain, and after each dental visit, someone turns the volume up on what was once a barely detectable buzz-hum-sing-roaring, sometimes so much that it wakes me up at night. So what’s a gal to do? Take to the internet and research the hell out of this of course, but I’ve also been telling people, which brings me a lot of stories of how people all around me have been living with tinnitus and other hearing quirks and limitations. There’s no cure, but there’s ways to make friends with this condition, which for me mainly takes the form of not storying this up with terms like “cancer’s collateral damage,” but instead telling myself tinnitus isn’t really unpleasant, and it’s more akin to be wrapped in multiple blankets of white noise. Sometimes it’s even soothing.
I’ve also recommitted to my wiggly meditation practice, changing my 5-minutes-of-meditation-when-I-feel-like-it to 18 minutes a day no matter what. While sitting quietly is a sure way to hear the loudest ocean of tinnitus engulfing me, it also gives me time to just be with it without thrashing against the walls of no such thing as pure silence. I also play music a lot, which helps somewhat mask tinnitus, and last night I stumbled upon singing along with it, then taking to the piano where I found it lived in the key of G. I then read today about how making and being in sounds that correlate to the same pitch is a practice called energetic masking.
So here I am, living life in the key of G, the letter that begins my maiden name of Goldberg but also goodness, google, God, guess, goobsmacked, Gaia, granola, gratitude, Gandalf, giving, grief, giraffe, grass, gravy, and grace. It’s not such bad company — and hey, a lot of these G’s are the very stuff of life — even if it’s sometimes a loud party of its own strange music.
A year ago today, pacing an empty parking lot, I cried so hard on the phone with my friend Kelley that it was hard to get the words out: “I have cancer. In my eye. I’m so scared.” Ken was racing back from Topeka to meet me after my two hours of scans at the ophthalmologist’s office. My right’s eye blurry eyesight wasn’t a minor glitch in this body’s solar system, but a large asteroid crashing through whatever semblance I had of calm, whatever thoughts I had of being safe.
Thus began my personal pandemic with its the customary WTF? phone calls, bouts of fear storms, and a lot of clearing of the calendar. The next day was far worse when my new ocular oncologist said it could be a melanoma but it was more likely a brain tumor. “Let’s hope for the melanoma then,” I said. She shook her head, “They’re both bad!” The interim between that moment — a few hours of more scans in between pacing the waiting room with Ken and my brother Ravi — and the oncologist confirming it was a treatable melanoma was terrifying. But when we got home that day, the sky took on a new sheen: a rainbow to the east, and it was enough.
I thought my life would be briefly interrupted and not changed all that much, but just like my breast cancer road trip 17 years earlier, it took many months and knocked over many plans, notions, and habits. I would have many more scans and tests, a radiation implant in my eye that would require two major surgeries, and a whole lot of time enveloped in hurt and anxiety. That summer, I hardly left the house except to visit a doctor or my therapist, donning two pairs of sunglasses and often a towel over my head because light hurt (obviously, I wasn’t driving). Eventually, I healed, and although my right eye is far past legally blind and I still can’t open it completely, I’m okay. The changes put in motion are still unfolding, and that’s okay too.
While the word “pandemic” refers to a global epidemic, for me and for any of us who go through such mortality-laced journeys, it sure felt like my whole world was in crisis. To ensure healing and safety, I was in home lock-down much of the time. The economy of Caryn World also tripped into the ground and stayed there for a while with lost income and, even with decent health insurance, thousands of dollars of medical bills. But lucky for me — and lucky for all of us right now — I could choose to surrender to what I needed to do based on the best science and medicine available.
Yes, a global pandemic is unprecedented in our lifetimes, but most if not all of us have lived through the world as we know it dissolving under our feet in a flash. Having the rug pulled out due to serious illness, death, heartbreak, and all manner of other very human challenges is part and parcel of being alive. We think we’re living one story, and poof! Suddenly, it’s a good thing to have erasable gel pens for your calendar, some savings, and the ability to make good things out of our friend, the potato.
This comes home to me lately on Tuesday nights when, through Turning Point, I facilitate writing workshops for people living with serious illness. I started doing these workshops 18 years ago, fresh out of cancer #1, although now we’re meeting through Zoom instead of in-person. A little like a warped futuristic vision of the Brady Bunch, 18-21 of us write and listen our way to greater meaning, strength, and mutual understanding. Some are finding new ways to bake chocolate tortes, some are summoning the strength to get out of bed while irrevocably heartbroken by the loss of a spouse, and some are dealing with chronic pain or what bad news might be just around the next blood test or MRI.
We’re well-accustomed to the land of the personal pandemic, and a good many were unfazed by stay-at-home orders, which we’ve had to enact before for a few months or as a way of life after losing some of our immune system’s robustness or our body’s mobility. We know what it is to eat resilience for breakfast, aiming ourselves toward outlooks and activities that tilt open the door to some calm, some comfort, some joy. “Yeah, I don’t go to the store anyway,” a woman with a neurological disease told us. “I’ve hardly left my house for years,” someone else chimed in. Over years of living with illness and/or being a caregiver for a patient, many have learned how to “use it up, wear it out, make it do, or do without,” to quote Boyd K. Packer. No wonder we find great intrigue in the antics of squirrels or birds, growing flowers, baking bread, or other everyday resilience practices, readily available as we cross over the threshold of one room to another.
But it’s not just what people do in a personal pandemic: it’s very much how they frame the narrative, including the low dips, of their experience. Someone I’ll call Lulu has minimal energy because of her aggressive cancer, so she’s determined to make the best use of her time and energy left, using it to talk lovingly with her family and make special surprise boxes for her husband and daughter to find after she’s gone. “Bill” goes to his porch to breathe through the pain, focusing his attention on cardinals fighting it up in aerial dances. Lou (who has given me permission to use her name) wrote a book about her Vietnam nursing experience, where she was exposed to the Agent Orange that planted Parkinson’s in her; now she regularly speaks to veteran groups and community gatherings in between gardening and grandmothering, even if she’s a little off-balance some days.
This day, a year after my last personal pandemic showed up, we’re in the middle of a global pandemic, seven weeks in lockdown, but I take note of how many doors are still open, like one leading outside, where I plant some lilies or the door to my car which I can drive well enough with one eye to meet friends for socially-distant walks. As time passes, I even cross the threshold of not seeing my eye adventure as a loss because I keep learning how in any pandemic — personal or global — we have the ability to grow magic eyes that let us see our small worlds or the world-at-large in new ways.
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Denise & Judy Back When We Could Go to Pastry Shops
It only took a few seconds of looking at the NYTimes map of the pandemic Saturday night for me to start hyper-ventilating and crying. At that moment, I didn’t yet realize I needed perspective, big-picture, deep-time, and wide-angle views to not just calm myself at the moment, but forge a more informed path forward. After taking a Lorazepam, drinking some water, vowing to self-isolate from regular bouts of Coronavirus news, and breathing slowly, I called my friends Judy and Denise. Both poets with miles of life experience winding through great wisdom, they gave me the gift of such perspective.
“I think of us as part of the herd, and now we have to do what keeps the herd healthy,” Judy said. Although we’re socially distancing, we’re actually coming together to support our collective health and life, giving each other a wide berth to ensure our safety as we roam the sometimes narrow trails of our homes and yards. I think of a Washington Post article I saw last week about staying home and apart not primarily to protect ourselves (although of course that’s essential) but to protect others who might be far more vulnerable that we are to Corvid-19.
“Think of what our parents and grandparents went through with World War II and the 1918 flu pandemic, which started in Kansas” Denise reminded me. We talked about the very long arm of what we know of human history — all the wars, pandemics, and natural disasters that patchwork a large story of perseverance. “Humans are wired and evolved for resilience,” Denise added.
Since then, I’ve been pondering the histories of my ancestors — the pogroms and the Holocaust that killed many but not all, the wars that turned daily existence into insecurities of scarcity, danger, and loss — as well as the generational stories of others I know. What was it like for one of my German friends who was born in early 1945, just in time to be piled in a wagon with many household items, because her family’s home was now destroyed? How was it for my grandparents to live through WWII, even though they were safe in Brooklyn, not knowing if Hitler would take over the world or if their relatives back in Poland, Russia, and Romania would survive (they largely wouldn’t)? During the 1918 pandemic — one the most deadly pandemic in human history — was it so much like living in a war zone that many were enveloped in fight/flight mode for months?
Denise and Judy reminded me that most generations have to deal with something overwhelmingly threatening; this is ours. Yes, it has its distinctions just like any disaster, but there’s a lot in common with past threats. We don’t know when it will end, who it will sicken or kill, what our economy will look like, how the herd will change, and then there are dozens of ifs that can wake up a person at 5 a.m. We don’t have control over ending this quickly, although we can do our part to hasten that ending. We don’t know a thousand and one things about the time ahead or the time we’re in right now.
I don’t mean to minimize suffering, death, mourning, and terror around the world. At the same time, despite this age of collective anxiety and fear (surely bred into our bones from past generational traumas, and reinforced by viral wolves at real doors), we go on like so many other species still vital. Just like the herd of shy deer edging the woods where I live, the squirrel families racing across the roof, the crows landing in the field to find something tasty or shiny.
We have history on our side and the herd to tend, so tend it we will, extending care and affection (without touching), attention and intention toward those we love and those we don’t even know, guided by what’s imprinted in our DNA about the herd and history. I leave you with this call to courage and love from Valerie Kaur of The Revolutionary Love Project: “This pandemic will test who we are, as a people. Will we succumb to fear and self interest? Or will be double down on love? Will we let social distancing isolate us? Or will we find new ways to reach out, deepen our connections, step up community care, and tend to the most vulnerable in our communities? I believe this is is a time to love without limit.”
It’s 5:47 a.m. when I wake, trying to figure out how to fit my laptop into an antique desk that’s falling apart. My worry about the dream desk starts galloping into many manner of other worry, from the sublime (climate change) to the ridiculous (having to wake early for a gig next February, and what if I didn’t sleep well the night beforehand?). I steer my mind as best I can away from the tar pits of habitual anxieties (“don’t think about the kids, don’t think about the kids, don’t think….”) and thoughts catalyzed by the shock of cancer and trauma of treatment. But still.
Lately, this human has been easily tipped into tiny or not-so-tiny panic attacks, usually in the middle of the night (their breeding time) and sometimes, out of the blue, mid-morning for no apparent reason. Realizing who the little man is behind the curtain is — the after effects of the cancer diagnosis most likely, come out to roost in prime time now that I’m through so much of the recovery — doesn’t help all that much except to remind me that this is a common kind of thing. I work enough with people living with serious illness to recognize how, months after being spit out on the beach from the whale of chemo, surgeries or radiation, the terror catches up with us.
At the same time, as a person prone to anxiety (I come by it honestly given my family and ancestral history), I’m not unfamiliar with my friend, the panic attack. I say “my friend” purposely here because I’ve learned it’s best not to run and hide, call the panic names or otherwise diss it, but get present enough to breathe, name what’s happening, and remind myself of some logic (hey, there’s nothing I can do to reform Mitch McConnell, so let it go). It’s helpful to tell myself that it’s just anxiety talking, and all will be sunnier in the morning. Yes, I have meds to take proactively or as needed, plus this great Gaba (an amino acid that helps calm the brain) supplement to spray into my mouth, and a lot of breathing and relaxation practices. I also know that in the middle of that panic gripping the center of my belly, it’s likely I’ll forget everything I just named here, so I lie in the dark, and aim my thoughts toward remembering how to breathe and what to think.
Remember the river too
I’m also far from alone. Friends and family often reply, “me, too!” when I tell them of a recent running of the bulls in my body and mind. Maybe it has something to do with a particularly energetic full moon lately, the reality that we are in the sixth age of extinction (200 species vanishing a day, Greta Thunberg recently said, and yes, she’s right), and so many people and other species experiencing so much avoidable suffering born of oppression, greed, arrogance, and ignorance.
Perhaps it’s also a natural response at times to the reality of being human. When I was talking with Neela Sandal, my integrative physician, last week, he told me an old story from India that included the question, “What is the most amazing thing in the world?” and the answer, “That everyone is dying and no one believes it.” Mortality is a kick in the ass, and it makes sense that given how much we live in a death-denying (and at times defying) culture, that sometimes the space between a sense of control and the reality of life’s fragility and mystery fills with adrenalin.
So for all of us who occasionally experience any size panic attack in any nook and cranny of our lives, it’s good to know that we’re in good and honest company. Sometimes there’s a quick fix, and often there’s not, but there’s always time, turning us from the temporary into the next moment, then the next. Like now when I write this to you on the porch, breathing easy and appreciating the wind, the first leaves falling, and the occasionally monarchs migrating through on their way to somewhere else. I tell myself now and also in the middle of panic to embrace some measure of gratitude: remember all those I love and who love me, remember the sky, remember the river, remember the wind and how it’s always moving and changing.
When I had breast cancer 17 years ago, I learned some things about resilience, the ability to bounce back. There’s nothing like being thrown off a bucking bronco to discover that yes, you can hit the ground, hard, and yes, you can hobble back to your feet and strength. There’s also nothing like community and all the love that made me upright again, then fed me homemade soup at regular intervals.
In 2002, I discovered I had breast cancer, lymph node involvement, and also the BRCA 1 genetic mutation — which increases the risk of breast cancer, ovarian cancer, and other cancers (even melanomas, like what I now have). There were three big surgeries, akin to holding onto a mechanical bull in the middle of a tornado, surrendering to the anesthesia, and waking up to nausea and clear skies. There were also months of chemo, mounting one unbroken pony after another with the certainty that I would be thrown off and I would throw up, and my white cells and mojo would plummet. I’d be overtaken by a numbing white sleeve of sleep at any moment interspersed with steroid-induced closet re-organization at 3 a.m. Ken, my family, friends, and big community love got me through, filled our refrigerator with blintzes and chocolate pudding for the six months of chemo, drove kids to and from piano lessons and hospital visits, brought me a TV and VCR (we had neither beforehand) so I could zone out on Steve Martin movies, and talked me through fear storms.
In the years since, I’ve understood that the cancer rodeo grabs hold of many of us as patients and just about all of us as people who love people with cancer. Having facilitated writing workshops for people with cancer and other serious illnesses at Turning Point in Kansas City for the last 17 years, I’ve also seen miraculous displays of grace: people who find the strength to open their hearts to life and make new meaning. From all of this, I’ve learned a few rodeo tricks and tips from the pros:
Generally, the hardest part is the excruciating limbo between “you have what sure seems like cancer” to a precise diagnosis and treatment plan.
New and mind-blowingly innovative medical treatments are coming to fruition all the time.
Energy healing and other forms of healing (whatever works for you) — acupuncture, massage, yoga, nutrition, walking with friends, laughing our asses off together — at best can spark startling revelations, and at worse, can dissolve incapacitating fear.
Denial is not a dirty word: it’s a necessary coping mechanism along with dimming the harsh lights of what’s likely ahead for us. We can’t live fully while carrying a backpack full of big rocks all the time.
Statistics are somewhat meaningless in the intimate space of being alive as a singular person connected to other people in the here and now. I’ve seen people with stage 4 cancers kvetching and sharing jokes 15 years out, and I’ve seen the opposite, too.
Cancer doesn’t change who we are; nor does treatment. I feared I wouldn’t still be myself on heavy doses of chemo, and yet I was totally still me, maybe even more so. Big dances with mortality reveal to us more of who we innately are, and that is a priceless gift of perspective.
There’s incredible good company at the cancer rodeo: people with the best senses of humor and get-up-and-go gumption because of close encounters with the life force. These are the best people you’ll ever meet or even be.
No one is immune to mortality.
Which leads me to now: some fuzzy vision in my right eye and a lot of blinking since March led me to an excellent ophthalmologist, Dr. Brown, who, after two hours of shining lights into my eyes while having me look right or left and taking various images, had to tell me there was definitely cancer there. My stomach plummeted, and I felt the floor fall away. The rest of the day included talking with my wonderful integrative physician, Dr. Sandal, and my fantastic oncologist, Dr. Soule, in between a lot of phone calls, numbness, loss of appetite (a rare thing for me), occasional freak-outs at what wild animals I would have to ride and fear over if I would get to the other side intact. I also petted my cat a lot.
Yesterday, Ken, my soul brother Ravi, and I went on an inner space mission to Dr. Desai, a superb ocular oncologist at St. Luke’s Hospital. Did you know they can do an ultrasound of your eyeball? I know that along with how contrast dye of the eye produces clear images and that if you subtract the shortest man in the world from the tallest, you get Shaq O’Neal (“Who Wants to Be a Millionaire?” was booming in the waiting room). The extreme possibilities were extremely dire, and while I won’t know for completely sure if the rest of my body is clear until after the PET scan and brain MRI, when Dr. Desai said it was a treatable melanoma, I burst out crying in relief.
What’s next is a tiny gold button full of radioactive pellets planted behind my eye before being removed five days later. Then, aside from potential and probable long-term side-effects and vigilant monitoring for the spread of micro-melanomas, I’m done with this rodeo, and maybe with the cancer rodeo circuit for good…..or not, which is a big reason all this can be so scary.
The view from here
Now it’s time to ready myself for the rodeo and other metaphoric renderings of what’s ahead, knowing I will find a way through thanks to dedicated medical professionals, gifted healers, and especially my best-beloveds, particularly Ken, who gets to go with me yet again through a mess of tests and challenges. While I don’t own a pair of red cowgirl boots, I can barely ride a horse, and I can’t yodel to save my life, I can be brave enough to let all these people and procedures save my life. Then, probably sometime this summer, l’ll be on the other side with a more resilient spirit, more grateful heart, and maybe a cowboy hat too.
Thank you for reading this and being with me at the start of all this.
