Category: Blog

Tumor Can’t Take My Voice

Last week I learned I have a tumor at the base of my skull that is slowly taking over my brain stem. “First, your tongue will go numb. Then you’ll lose your voice,” said my doctor in the same matter-of-fact tone that he might have said, “First your appetizer will arrive. Then you’ll get your salad.”

At 45 years old, I was, up until this moment, medically “boring.” No health or genetic history of any kind. Previous conditions: none. Previous surgeries: wisdom teeth removal. I ran ultramarathons and often podiumed in my age group. The news was a shock. I stared at the screen with the black and white images of my skull and tried to make sense of this white growth, shaped like storm clouds, pushing into the dark spaces around my tongue and vocal chords.

“How does your voice feel now?” My doctor asked, “Are you able to use it whenever you want?” I said yes, but the question hung there for a moment.

Usually, when the topic of “Finding Your Voice” is mentioned, it’s about permission, but I feel lucky to have been born into a time and place where I feel free to speak up and speak out. But that doesn’t mean I have known how to find my voice and use it to author my life. The idea that I might permanently lose the ability to speak made me acutely aware of how little I genuinely used my voice on a daily basis.

Take the other morning as an example. I woke up feeling raw and scared by this new diagnosis. My husband was making himself breakfast. Instead of saying how I felt, I used my voice to say, “Should you really be having two fried eggs for breakfast again?” Then a neighbor asked how I was feeling, and because I didn’t want to upset her, I said, “I’m fine.” Later at work, colleagues asked me how a project was going. What I really wanted was their support, but because I didn’t want them to feel burdened, I opened my mouth to ask for help and closed it again. Then when I went home in the evening and felt helpless to manage my children’s screen time, I used my voice to scream at them and make them cry.

I was raised to be nice, to avoid conflict, to keep the peace. For people outside the house, I am calm and kind, generous and positive. I use my voice to say what I think others want to hear. Then later, at home, the volcano inside me erupts as resentment or rage and then my children and I suffer the consequences of my reluctance to use my true voice all day long. There is nothing peace-making about avoiding saying things that might be uncomfortable. There are only the consequences: strained relationships and a lost, unused voice, maybe forever.

The voice I want to find in me and in you is the one that sings, the one that moans, the one that trembles and cries and howls and roars—a voice that is primal and real– one that will make me soar and others stop in their tracks and listen. It is not the voice that hedges or hesitates, judges or gets jealous. The voice I want to find is the one that has the passion of that angry voice when pushed to the edge, but without the helplessness. Can you imagine if that voice was tamed, or if we exercised its muscles more often in small ways? It would come out as song.

We are born with a voice that is powerful. Then one day we are teased or ignored or shamed for saying how we feel, and suddenly our voice makes us feel unsafe. Maybe finding our voice requires retracing our steps and locating where we last remember using it. Then we can begin again to express ourselves, however awkwardly.

I have a memory like a snapshot of when I was twelve and the girls in my cabin at summer camp made a list of our names and the expression we could most often be heard saying. Mine was, “Stop it! It’s NOT funny!” When I saw what they had written, I was horrified. Now I knew that they saw me as a whiny, defensive, irascible wimp. Never mind that saying, “It’s not funny” might have been a perfectly legitimate way of standing up for myself. It didn’t matter because I wanted to be seen as fun and easy to be around. I wanted to be loved and included, and so I began artfully saying anything, or nothing at all, to earn that kind of belonging.

Another memory: at fifteen, I liked to write poetry. Then a boy I liked scribbled in the margins of one of my poems, “If there is an original thought in here somewhere, I can’t find it.” I ripped up the poems and threw them away.

Moments like these, layered like weights on a scale, tipped me off balance. I stopped using my voice to express myself and instead used it to say what I thought others wanted to hear. In the process, I lost my voice. Now, finding my voice feels like listening to the sound of a hawk’s wings high above me. Or rather concentrating on something small like the wings of a bee or a butterfly.

While sitting in the doctor’s office, I had a disturbing thought. Finding my voice was no longer just a phrase from empowered women’s literature, but a matter of life or death. What if this tumor moved into the place on my vocal chords because the area seemed available or abandoned? The thought frightened me, then gave me an idea. Now, using my voice might be as effective as flipping on a light switch and letting the tumor know, “Sorry. No Vacancy: This space is occupied and home to a powerful, wild voice that cannot be silenced.

As you can imagine, I am willing to try anything to heal. I left the doctor’s office determined to try an experiment; I would use my voice to say what I felt and knock this hobo tumor right out of my brain-stem railcar.

The next thing that happened was that some friends invited me out to a movie. I didn’t want to go, but I didn’t want to stay home alone that night either. I also thought it would hurt their feelings if I said no. So I went. (Old habits die hard.) Well, the movie that was labeled a comedy was grim; the whole thing was filmed in dark green and brown. It played the same violin lines of music over and over. People died senseless, graphic deaths. No one smiled. I sat there in pain, but to get up and walk out of the theater felt strangely not obvious. It felt like I had to stay, because that is just what one does. But with the courage of my new experiment, I leaned over to my friend and said, “I’m going to leave now.” Then when people on screen started kicking dogs to death and blinding themselves with steak knives, I crawled over my friends and left the theater.

I went for a walk and watched the sunset over the mountains. I had a strange sense of exhilaration, so different than the dread I felt in the dark theater. I had walked out. I would never have done that before—it would have felt weak or just rude. But the idea that I could, and that I did, felt like freedom. And you know what? Another woman sitting behind me walked out right after I did. I wonder how many of us were sitting in that theater, waiting for it to get better, and not doing anything.

It shouldn’t have to take a diagnosis of a massive tumor to recognize that there is nothing benign about not expressing ourselves. The question I am living with now isn’t, “When will I lose my voice?” But rather, “When did I let it go?” When did I ignore it so much that it walked away, opening the door for something ominous to move in?

Maybe someday soon I will use my voice to end violence and inequality or save lives in a big way. But beginning small feels like a form of deep listening and discovery. Now I check in with myself moment to moment. How do I feel right now? What do I really want to say or create with this, my only voice?

Then I close my eyes and imagine that every time I open my mouth to express myself fully, the force of my truth rips the tumor storm clouds off my vocal chords, and blows them out of my mouth. I keep my eyes closed and start to sing, feeling these tiny tumor clouds rolling like tumbleweed down a dusty, dirt road, far, far away.

*****

How To Be a Kid Again

Recently, some of my friends with older children were lamenting that the days of trick-or-treating are over for them. But why? Does it have to end when you turn a certain age? My friend Deb doesn’t think so. Last year, she put on a wolf mask and a fake fur coat and went out on Halloween. “When you’re 5’2,” she told me, “You can trick-or-treat forever.”

I love Halloween. But my appreciation for it really has nothing to do with candy. I like the childlike invitation to dress up. I love the idea that you can throw on a wig or a beret and a mustache and Voila! You are instantly anyone or any thing you want to be. There’s the imagination phase, where you spend time wondering what you want to become, and then there’s the creation phase, the scramble to pull the pieces together and get up the courage to go out in public as, say, a BLT sandwich. I once dressed up as a BLT. Another time, I painted cardboard until I was a bagel, and then I cut foam into a misshapen circle to be a “Queen” Bolete mushroom. Those were in the category of things I liked to eat. Other years I went as Katy Perry or Grover, the blue muppet from Sesame Street. They were in the category of someones I wanted to be. Dressing up is about as creative as it gets; you make something out of nothing. Even if your costume comes in a plastic bag from Amazon.com, it’s still magical if you own the character you’ve decided to become. Take my friend’s three-year-old son Jaxson, who wasn’t just Tigger, but T-I-Double G-Errrrr.

This year, Halloween had a certain poignancy. I was not at home and I missed my kids, but I also missed all the children in the neighborhood, dressed up and believing they were animals or superheroes or superstars. Then there was the heartbreak of seeing the children at the hospital. Every morning when I show up for my radiation treatments, there are always kids in the waiting room. They are doing chemotherapy and radiation at the same time so most have lost all of their hair and are doing several energy-sucking, nausea-inducing sessions a day. I have come to know a few of them: two-year old Clayton, five-year old Aïsha, and three-year old Felicia, or Feliz (not their real names). These children go joyfully into the treatment room and come skipping back out. They don’t weigh down their experience with worry and premature grief. The other day, Aïsha found a toy xylophone, banged on its bright tin keys and belted out for all of us in the waiting room, “Everybody, yeah, eve-rrry-body is IMPORTANT!”

But it was Feliz who told me that the light around our radiation machine can change colors. I just assumed, in my grown-up way, that it was always blue. But noooo…this thing has a remote control and there are multiple shades of neon. It even has a “Disco Mode” where the blue light switches to pink to yellow to green. When I found that out, I had an idea.

On Halloween morning, Feliz came running over to me in her bright superhero costume, pulled out her pacifier, and said with a big smile, “I’m Supergirl!”

“Yes you are!” I responded and we flexed muscles for a while.

Then she asked, “What are you?”

“I’m a Disco Queen,” I said matter-of-factly, in my blonde afro wig and disco-ball earrings.

“Oh,” she said, and popped her pacifier back in her mouth before flying away. I turned to her mother and said, “Feliz is teaching me how to bring joy to my radiation treatments.” “All of us, ” she responded, “She teaches all of us so much.”

Inspired, I felt lighter going into my treatment. Maybe I could even have some fun. I seized the remote control and put the lights on “Disco Mode” then I asked the nurses to change the Pandora Radio station to ABBA and I danced. Not for very long, and not very well, but still, I was dancing in the radiation room! The nurses laughed and said, “You’re being such a kid!”

“Thank you!” I said.

And thank you Feliz, Aïsha, and Clayton for teaching me how to embrace the joy that is in every situation, no matter where I am and what I am doing.

Happy Halloween everyone!

*****

by Susie Rinehart

The Days of Awe

The Days of Awe are the ten days between Rosh Hashanah and Yom Kippur. Though I am not Jewish, they are an invitation to pause, make amends, and commit to transformation. Meanwhile, Canadian Thanksgiving celebrates the harvest, but it’s also an annual reminder to stop, turn back on the past year, note the mistakes and the losses, and acknowledge how things could have turned out much worse, but didn’t. It always made sense to me, to gather friends and family in October, to mark how far we’ve come and to give thanks for all that we have.

When we first moved to Boulder, CO, I stood in our elementary school playground at pick-up time on a windy day and invited our new friends over for Thanksgiving. Oh! They asked, “How is Canadian Thanksgiving different?” I told them the usual stuff: that it falls on the second Monday of October instead of the fourth Thursday in November. And that Canadians don’t have pilgrims, but instead take the day to be grateful that our cellars are full of squash and apples and potatoes. I also implied that it’s a little more relaxed in Canada. Some people have the meal on Sunday, others on Monday, and families can serve whatever they want. We usually have ham instead of turkey in our family, for example. The point isn’t what we eat or when, but that we pause to give thanks. There’s no rush to go shopping on “Black Friday” or “Cyber Monday”–it’s just a meal together, full of gratitude and grace.

“Oh,” they said. “We’d love to come!”

I blame it on the wind that day; it made me feel mischievous and bold, so I kept talking, spinning a tale that veered away from the truth. I said, “There’s a catch. The other difference is that Canadians have a superstitious streak. We eat in costumes to disguise ourselves from the bad spirits who might bring harm or give us an exceptionally cold winter. Back in the 1800s, people wore veils and hats and scarves, but now people dress up for fun: you know, eighties outfits and gorilla suits.”

“Alright, sure,” they responded without blinking, and I thought they knew I was joking. It didn’t occur to me to tell them that I had made the last part up.

The following Sunday, our guests arrived wearing afros and gold disco boots, banana suits and Harry Potter capes, carrying mashed potatoes and brussel sprouts. They seemed surprised that I wasn’t dressed up. But I was more surprised than they were; They had believed me! I couldn’t back down now. So I ran to the closet and found the dress-up bin and then my family piled into the bathroom and threw costumes on, while I explained what the heck was going on.

We ate that way, fake mustaches falling into the soup, mashed potatoes getting on the low-hanging disco sleeves, and we didn’t tell them the truth until after dinner and before the butter tarts were served. Our guests leaned back in astonishment, but they chose to keep their costumes on through dessert and all the way home. It’s now a tradition with those families–we dress up and have a meal together every October. Our intention in keeping this joke alive was never to mock the holiday, but to lighten it up a little. I thought, “Why can’t we be grateful and silly at the same time?” I also just like to wear costumes. They make me laugh.

The connection between Thanksgiving and the Days of Awe is this: For a moment each autumn, we stop and reflect. We remember that what makes us human is that we are capable of making great mistakes, and yet we are also capable of great transformation. Some say that Rosh Hashanah celebrates the creation of the world. But if you believe that creation is ongoing, then you celebrate that you have a hand in how it plays out by repairing broken relationships and giving thanks for the ones that are whole and holy. You also take part in creation by making choices every day. On Yom Kippur, observant Jews blow the ancient ram’s horn to wake everyone up and ask, Are you the person you want to be?

During the Days of Awe, I am hungry to be outside in nature as much as possible. It’s there that I do my best reflecting. And though I love gathering family and friends close to dress up and feast and laugh, I also know that I have to be alone, because transformation starts with the self. I walk under trees and ask myself, What are you grateful for? How are you talking to your loved ones? What do you need to do differently, if anything? The goal is to create one great story with our lives, worth sharing and celebrating every year.

Years ago, a friend let me participate in the ritual on Rosh Hashanah of dropping bread crumbs into a stream to release your sins from the previous year. I wrote a poem after that experience and gave it to her. Then I promptly forgot about the poem, though I still try to do the ritual every year. Recently, she mailed it to me. I’ll include an excerpt of it here as a kind of blessing–to thank her and you for this great story we are weaving together.

*****

The Days of Awe

These are the days of awe.

Lie back in summer’s last green grasses.

Listen.

Each cricket’s song is slower now,

the wind smells of ripe apples,

the soil devours rain

and coughs up stones.

Blackbirds rise up from the fields

Like mist off a pond.

Trees gain color and restraint overnight,

act like old ladies who

snap their purses shut

in anticipation of a need.

Remember

The sun isn’t travelling

East to West.

We are

spinning — West to East,

setting to rising,

beginnings growing out of endings,

not the other way around.

Lie back in the wet grass.

Wait for the sky to grow dark.

Breathe in the moon

like a question

you’re not quite ready to ask.

Be like the river

Who moves toward the unknown,

who doesn’t turn around

and ask the mountain for directions.

Listen to the grace of insects,

then drop, swell, and release

like bread in cool, swirling waters.

–SCR (9/26/99)

by Susie Rinehart

Balance Shmalance

I was off-balance all week. I celebrated the elegant evenness of the equinox by throwing up all over a neighbor’s garden. The nausea was caused by the radiation, but the feeling of being off-balance was caused by my expectations that it was going to be different. I imagined that I would spend these eight weeks in Boston receiving treatments, yes, but also going for long walks and scribbling deep thoughts in my journal. I thought maybe I could even write a book in these two months. I wish I were kidding. My thinking was that since I wasn’t working and the children were back in Boulder, I could be mega-productive.

The first morning after radiation, I felt ok. The second day, I couldn’t even get out of bed to get myself a glass of water. My days became very one-dimensional: horizontal. Then Fear showed up, saying all kinds of mean-spirited things like: This is just the beginning; How are you going to make it through 37 more treatments? Or You said you were going to write! Get up! I wasn’t practicing good self-compassion because I had these unreasonable expectations. I thought I could balance my time better, but I forgot that what makes balancing a trick is precisely that it is extraordinary, like the street performer who steadies himself on one foot on a twenty-foot ladder.

And like the equinox. Twice a year, the earth doesn’t tilt toward the sun nor away from it, but seems to orbit evenly so that night and day come into balance. It’s a beautiful thing worth celebrating, but can you imagine expecting it to stay like that for the remaining 363 days of the year? The way we emphasize the need for balance in our lives makes me feel like I should figure out how to be more physically, mentally, and spiritually poised every. single. day. I get stressed because I work too much and play too little or play too much and work too little or eat too much and exercise too little or exercise too much and write too little.

What if we spent less time jamming a yoga class in after work and more time contemplating that we are living on a spinning rock that is flying through the air in an expanding universe? Maybe then we’d cut ourselves some slack.

What does this have to do with week 1 of radiation? Just this: I’ve never been very good at balancing my desires with my reality. Last week, I expected to be able to do more, to balance my radiation treatments with time in nature and time writing, and I couldn’t. Not even close. And that’s OK. What I want to change is not my reality, but my expectations. The expectation I had that I would do more strangled the life out of a good week and made it feel like a bad week. This equinox, I vow to lower my expectations and trust that a feeling of balance will occur as a rare and wonderful thing. And then when it happens, I’ll be pleasantly surprised, maybe I’ll even give the day a special name, and invite you over for a celebratory dance party.

*****

by Susie Rinehart

What a Bad Day Looks Like

Tuesday at Mass General hospital in Boston was supposed to be a long day, but an easy one. All I had to do was have pictures taken of how things looked inside my skull and neck with a CT scan and an MRI, nothing I hadn’t done at least several times before. In fact, the night before when I struggled to get a good night’s sleep I thought, “It’s Ok, I can nap inside the machines.”

Instead, I ended up half-naked on my hands and knees in the streets of Boston, violently throwing up every last grain of my steel-cut oats breakfast while my body blocked the entrance to the hospital parking garage. How did I get there?

That day, Dr. Liebsch, our radiation specialist at Mass General, wanted the most detailed images possible of my head and neck in order to create a radiation plan for me. Proton-Beam radiation is a powerful and effective means of zapping a tumor without damaging surrounding tissue. To get an accurate photo-map of where the tumor is and where the healthy tissue lives, they needed to inject color contrast into my spinal fluid and let it move to the top of my neck before sending me into the CT scan and MRI machines. Dr Liebsch explained that I would need to lie on a table tilted slightly toward my head and that I might experience a headache for up to three days afterwards.

Dr. Liebsch has silver hair but looks younger than his 60 some years. He is not very tall and has a soft, round face. He explains complex issues in a thick German accent with a voice just above a whisper as he calmly waves away concerns with long fingers and manicured nails. But looks are deceptive; Dr. Liebsch is tough, strict, and fiercely dedicated to getting the details right. He once took 45 minutes to explain how he wanted my short medical history organized on paper. Another day, he spent 2 hours crafting a fiberglass mask of my face and neck to hold my head in exactly the same position every time I had images taken or received radiation. We liked his fastidiousness; it was a good quality trait in someone who is in charge of radiating your skull.

On Tuesday, we arrived in time for me to change into a hospital gown and go straight to the room where they were going to inject the contrast fluid. Maybe it was Dr. Liebsch’s accent, but in all of his instructions, I missed the part about the new guy (a resident doctor) doing the spinal tap on me. I also missed the part about how they needed to strap my ankles into leather buckles so I wouldn’t slip off the table when they turned me upside down to let the contrast do its magic. The “magic” gave me a raging headache, made worse because I was lying on my stomach and had to really concentrate to breathe fully. Finally they straightened me out, rolled me onto a stretcher, and pushed me into an elevator and down several hallways to another room where I promptly threw up several times from the headache pain. Throwing up is never fun, but throwing up with a recent neck fusion is a whole new kind of painful. This was no one’s fault; I was having a rare, unexpected, bad reaction to the contrast that was not dangerous, just annoying.

“You ok?” Dr. Liebsch asked.

I gave the thumbs up.

“Good,” he said, “Now you must lie on the floor and roll around to mix the contrast up.” I waited to see if he was joking and he only gave me his hand to help me off the table. I handed the nurse my motion sickness bag and slowly lay down on the tile floor. Then I rolled back and forth with all the grace of someone in a neck brace who has just thrown up several times and now discovers that she is on fire. When they said I could stop, I crawled back onto the table and lay flat on my back. Then they pressed the fiberglass mask tightly over my face and neck before sliding me into the machine. Somehow, I did not throw up.

When the scan was over, I met Kurt in the waiting room where he pointed out that my hospital gown only had one working tie at the neck and the rest was wide open to the world. Meanwhile, the fire alarm was going off in the building, but no one seemed to pay any attention. We left anyway as we had some time to kill before the next series of pictures. Outside, the fresh air felt cool on my face and I instantly felt better. Until suddenly, I didn’t. The next thing Kurt and I knew, I was buckled over in my useless gown, throwing up knives, or so it felt. There wasn’t anything wrong, it was just a bad reaction, but the freshness of my scars from the surgery and the immovability of my neck from the fusion made everything hurt more. I kept thinking, this is as tough as labor. Then the puke started coming out my nose and I couldn’t breathe. No, I thought, this is way worse than labor. It helped to cry. Kurt rubbed my back and tried to steer traffic around us while I puked and cried, puked and cried.

It got better after that. A nurse grabbed a wheelchair and put me in it and wheeled me back to Dr. Liebsch’s office. He immediately gave me an IV with an anti-nausea medication and had me lie down to make the headache stop. He was determined to complete the series of pictures and somehow he knew I could do it. But the MRI machine we were scheduled to use was off-site, so he whisked me into a cab, rolled down the window, and I stuck my head out like a dog as we zoomed along the Charles river and I tried to relax and watch the sailboats and rowing hulls, runners, and trees.

I threw up again into a biohazard bin when we arrived, but somehow felt good enough after that to let them strap that mask back over my nose and mouth and slide me into the MRI machine, this time for 45 minutes. Before going in, the tech handed me a button to push in case of an emergency. But my doctor who was focused on getting all of the images we both knew we needed said to me, “But don’t push it.”

Inside the MRI machine, I watched movies in my head, memories of family vacations on a northern lake or a Mexican beach and when those ran out, I went through a slide show of every relative and friend, pausing on each one’s smile for a three seconds. It worked to distract me from the deafening digital knocking and bell sounds that the machine makes; it also took my mind off the urge to use the button that I was not supposed to use. I knew that if I panicked and pushed it, we would need to start over. However bad I felt now I knew I would feel worse doing this again for another 45 minutes.

Finally, it was all over. We made it back to our hotel without another incident. When I walked into the lobby, an older African American bell hop gave me a big smile. I was still in my ridiculous hospital gown and wearing my neck brace so I wasn’t really in the mood to be seen, but he seemed genuinely happy to see me.

“My name is Thomas. In Jamaica, where I come from, we like to make people happy. May I sing you a song?”

“Sure,” I said.

And right there, in the old Holiday Inn lobby, Thomas started singing to me.

“Rise up this mornin’

Smiled with the risin’ sun,

Three little birds

Pitched by my doorstep,

“Singin’ sweet songs

Of melodies pure and true

Saying’, (this is my message to you),

Singing’ don’t worry ’bout a thing

‘Cause every little thing gonna be alright”

Then we all sang together,

“’Cause every little thing gonna be alright”

I smiled for the first time that afternoon because I believed it. Thomas noticed the smile.

“See, I make you happy!” he laughed.

“Thank you,” I said. And I meant it.

*****

Afterword:

We flew back to Colorado the next day and made it all the way home before the headache slammed me again and I was back in bed and hugging the toilet for the next three days, until the contrast dye was completely out of my system. It was a freak reaction that is over now and I feel weak but getting stronger. What amazes me is how I had a reprieve during the flight; what a gift. It could have been much worse.

by Susie Rinehart

Your Faces

Do you know what I thought about when I woke up in the Intensive Care Unit after 34+ hours of brain surgery?

Nothing really, but it’s what I saw that astounded me. For two days and two nights in the ICU, I saw nothing but the faces of people I loved on every wall, on every surface, in each fold of fabric. I saw my mother’s face in the stream of light coming through the door, the smile of a former student in the white sheet tucked over my arms, the flowing hair of a friend in the curtains, kisses blown to me from nieces and nephews from the ceiling tiles.

Of course I’ve heard of the way your life flashes before your eyes at the end, but this was not what I had imagined–there were no places, no events, no memories, no flashes of anything. The faces were like floating candles on a raft, carrying me safely to shore over a deep lake. And of course, there is the explanation that I was heavily medicated; I could label these images hallucinations and call it a day. But these faces were so clear and so specific to everyone I had ever met that I can’t dismiss them as such, so easily.

The day after my surgery, some of the finest neurosurgeons at Harvard and Mass General, Brigham Women’s Hospital and Dana Farber Cancer Center gathered together to review my case. They saw the images of the tumor in my skull before and after. They wanted to know how it was possible to remove so much foreign mass when it was tangled around the brainstem and almost every major nerve and artery. The surgeons asked about the neurological consequences of the operation. Their assumption was that there must have been some damage.

Can the patient breathe on her own? Yes.

Can she see? Hear? Think? Yes.

Can she walk? Yes.

This morning, my friend sits at the foot of my bed as I recover, reading to me from Facebook and my website the many comments I had not seen from the days around my surgery. “I was your student in 2006. I want you to know that I am holding you in light,” “I knew you at summer camp in 1985. I am praying for you,” “Your friends out west are imagining the tumor leaving you easily.” Tears filled my eyes as I understood exactly why I had seen an uninterrupted stream of faces when I awoke from surgery.

When the music of my inhales and exhales threatened to fade away to nothing and I felt the last page of the book of my life between my thumb and forefinger, I saw your faces. I saw the constellation of all of you who had carried me toward safety with your thoughts and prayers, lit candles, and ceremonies. You had a hand in this outcome. Do you feel the immensity of that?

I don’t pretend to understand the world. In fact, I am partial to its mysteries. I prefer to look about in wonder, to bow down in humility, and to kneel down in gratitude.

by Susie Rinehart

In A Dark Time the Eye Begins to See

So begins a poem by Theodore Roethke (pr. Ret-ke) that I used to teach. In a simple classroom on a farm in Vermont, we sat around a large maple table, reading the lines out loud together. We did this on the anniversary of 9-11. We pulled out the poem again when one of my students was paralyzed in a bike accident, and again when a faculty member’s brother died. It was a tradition born in the belief that poetry heals; it universalizes the human condition and gives specific language to feelings of sorrow that we share.

I’m thinking about this poem again because it is a dark time in America and across the ocean right now. Horrible shootings. Senseless, un-repairable bombings and violence. Politicians screaming offensive remarks, clouding the air with hatred. A people divided and afraid.

I know the purity of pure despair
My shadow pinned against a sweating wall—

I went for a run early this morning and a police car rolled up next to me in the dawn-dim light and I felt afraid. What was he going to do to me? I slowed down and let the car pass. A few minutes later, a young man was walking towards me. I felt afraid. Did he have a gun? I crossed the street and picked up my pace. Then I heard a deafening boom from somewhere off to my right. It was likely just a truck backfiring at a construction site, but I jumped. Both feet came off the sidewalk. I’m clearly on edge.

Plus, in my situation now, knowing that I have an extensive tumor threatening my brain stem and my ability to breathe, I can go to a dark place really fast. And I do. What if I don’t make it through the night? How will my daughter, who sleeps with me when she has nightmares, handle waking up next to her un-breathing mother? See, I told you I can go to a dark place, fast.

That place among the rocks, is it a cave,
Or winding path? The edge is what I have.

The thing is, I need to go to those dark places as part of the process. It doesn’t help to push those thoughts away – they just keep on coming back, knocking louder. So I am practicing sitting here in the dark, paying attention. It’s like walking in a forest at night without a flashlight and slowly letting my eyes adjust to the dark.

I also need to remember lessons learned from natural history. A deer, when it senses the presence of a mountain lion, jumps and runs away. Adrenaline pumping through her veins, she can move fast and far in just fifteen minutes. But then she stops running and stands still. She listens, and slowly relaxes. She lets her nervous system process the adrenaline and let it go. She stands there, licking the dew off the grass blades far from her fight/flight center where she was living just moments before. She recovers fully so that if the lion approaches again, she will be able to escape.

But in these dark times, we are living in our fear centers all the time. Our bodies can’t tell that there is no lion and that this is not, in fact, a case of life and death. We feel threatened, unsafe, out of control. And so our oldest protective fight/flight nervous system kicks in. The result is that we are trying to make decisions, parent, and live from the core of a nervous system that is only designed to help us for fifteen minutes, to immediately escape danger.

So what do we do? Step back and gain perspective. It’s been dark before. It will be dark again. We can still move forward in the dark. Ask the mothers of the middle ages. Ask the widows of the civil war. Ask the children of internment camps. Ask the young people of the late 1960s when we were caught in an endless stream of assassinations and war in Vietnam. Is this, now, really, the darkest time?

We have a tendency to imagine that the Golden Age is behind us, those days when people climbed hilltops to sit under trees and write poetry. Times were simpler, which must mean better than now. But is that really true?

Dark, dark my light.
A fallen man, I climb out of my fear.

This morning, I sit up in bed and close my eyes, letting waves of fear and emotion about my upcoming surgeries pass through me. I breathe and relax. What do I notice in the dark? I see that I have lived in fear for too long. I also see that I have counted on others to lead: politicians, lawmakers, and people I have deemed less-busy than me.

If it was clear before, it is vivid now. We need to step up. When my surgeries are behind me, I need to rearrange my days and devote at least 10% of my time to directly advocating for non-violence, for wild places, for gender equality, for gun-control laws. We’re sitting in the dark in our living rooms with the doors locked, when we should be sitting on our representatives’ doorsteps, saying we’re here to help you push peace forward.

And one is One, free in the tearing wind.

With my students, we used to linger on this confusing last line of Roethke’s poem, trying to make sense of it. This morning, I see the lowercase, singular “one” as me sitting in the dark, facing my personal fears. And I see the capitalized “One” as all of us. The way forward for me to heal is through the universal. We are all in pain and instead of just spinning in my own fears, I may as well show up and help others out. Maybe in the process of being in the dark together, we heal, and set each other free.
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by Susie Rinehart

Confessions of a Knife Saleswoman

Have you ever found yourself trying to become perfect at the wrong thing? I want to tell you a story about one of the many times I fell into that trap. At twenty-one years old, I walked out into the bright sun in a black robe and received my college diploma. I dreamt of being a writer, or starting a school someday. First, I really wanted to travel. So I went home, lived with my Mom, and got the best job I could find that would help me make a lot of money, fast: I became a knife saleswoman.

The way the knife business worked was that we were supposed to ask our parents for a list of names of potential buyers. My mother said, “I’m not going to let you con my friends into buying something.” My father said, “You have to do it the hard way. Get on that phone; make forty calls a day.” But without a list of names, who was I supposed to call? My lucky break came when I went to get a haircut. The stylist was young, gay, and happened to know a lot of other gay men who were doctors and architects, ones who were constantly remodeling their kitchens. He said, “I’ll give you a few names, Sister; don’t you worry. You’ll be selling more knives than late-night TV.”

Within a month, I was winning sales trophies and forgot that I was only selling knives to go traveling. I was way too busy competing with Victor Wong to become the top knife salesperson in the country. I even imagined that maybe I could do this for the long haul: be a writer, sure, but on the side, while selling knives. Then one day, on my way to visit my grandmother in her retirement home, the thought occurred to me that I could probably make a couple of sales while I was there. I imagined that my family would be horrified by what I had become, but when I confessed to my Dad that I thought of selling knives to helpless old ladies, he said, “That’s my girl!” Pleasing my father fueled my confusion as to what my path was supposed to be. Should I pursue a career in business?

One sticky, hot August afternoon, I had one more sales call to go. I knocked on the heavy door of a three-storied, red-bricked home. I felt like I had stood there before, long ago, in a Halloween costume. A woman dressed in a tailored gray blazer and skirt let me in. She had brown curly hair and glasses and was quite short. She only came up to my shoulder, but she seemed to tower over me with her suspicious stare and firm handshake. I asked for a tomato and a loaf of bread. I diced and sliced and decoratively coiled a penny into a pig’s tail with scissors. Then I looked down at my notes for the final question, “So, Mrs. Bartlett, do you want the Classic Carving set with scissors or the Holiday Carving set with a tomato trimmer?” Then I stopped. I knew that name. I suddenly knew exactly where I was. This was Noah Bartlett’s kitchen and I was pitching his mom a carving set.

Years ago, Noah and I were in a group of six students who were chosen to work independently with our own teacher, accelerating through elementary school. We thought we were invincible: a “Mission Impossible” team of nerds. We did everything together in those days: science fair projects, essay and public speaking contests, poetry readings and mock-trials. But as I grew older and hit puberty, I became less brave. Being apart of the Mission Impossible nerd team meant that I was different than all of the other kids. What I wanted most of all was to fit in with everyone. So I distanced myself from the nerds until I lost touch with them completely. I also lost touch with a part of me that I loved.

Now, thirteen years later, Noah’s mom looks at me hard and does not mince words, “Noah is in China. He is writing his second book with his Princeton professor. And you…you are selling knives!” She paused and looked at me with a mix of pity and judgment, “Don’t you have any ambition?”

The words stung. But it was a fair question. I had forgotten about the little girl that was winning Science Fair competitions and who loved to write poems and read them aloud at school assemblies. What was I doing? Working long hours to become the top knife-selling person in the country? If I was as smart as those teachers thought, why had I driven over a hundred miles yesterday to sell a bagel spreader? But Mrs. Ziegler’s assumption was wrong; I had plenty of ambition. I also had a supercharged work ethic. What I was missing was self-awareness and the bravery to go after the things that I truly loved. I didn’t answer her question. Instead, I rolled up my red-felt demo cloth, asked her to give Noah my best, and left.

The next day, I called my supervisor, a man who only seemed to wear beige, and quit. My father, the businessman, almost cried when I handed him my sales trophies and told him I was through. My mother asked if she could use my demo knives in her kitchen while I was gone. I hopped on a plane with my backpack. I wasn’t sure what I was going to do after my travels.

Was I still haunted by Mrs. Ziegler’s question? Yes. But looking back, I see that I beat myself up way too much for not accomplishing more, and I spent too much time comparing myself to Noah and everyone else. What Mrs. Ziegler had described was Noah’s path. Who knew where that would take him? As Emerson said, “The voyage of the best ship sails a zigzag of a hundred tacks.”

My path has not been straight, but it has worked out really well. I am living a brave, magnificent life full of adventure while serving others. I pay more attention to where I put my ambition, and I no longer fantasize about selling bagel spreaders to old women in senior homes, thank goodness. But when I go home to visit my parents, there are still a few people who call me “The Knife Lady” and stop me at backyard BBQs to ask me to coil a penny with a pair of scissors. I usually do it. Why not? One good party trick is a terrible thing to waste.

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by Susie Rinehart

Terrorists or Neurosurgeons?

“You know what I think when I see a muslim man in the airport?” my husband Kurt asked me as we waited in the security line at the Phoenix airport. “What?” I looked around nervously, wondering where this might be going.

“Neurosurgeon,” Kurt said, and smiled.

Kurt and I have spent the last two weeks in airports and in doctors offices across the country. When I first received my diagnosis of a skull-base tumor, I called the only neurosurgeon I knew, Dr. Moustapha Abou-Samra, in California. He is an immigrant, the father of two of my former students, and a man I hadn’t spoken with in over 20 years. He was on vacation and yet he returned my call immediately. He took the time to walk us through the difficult journey ahead.

Three days ago we were in Boston because the leading world expert on skull-base tumors, Dr. Ossama Al-Mefty, an immigrant from Syria, had seen my MRI scans. He personally spent two hours with us during his dinner time, just to help us understand my diagnosis. Today we were in Phoenix, sitting for five hours in a packed waiting room at the Barrow Neurological Institute. The surgeon, Dr. Spetzler, an immigrant from Germany, had made an extra effort to see me; I would be one of 108 patients his team of surgeons would meet that day.

In the waiting room in Phoenix, there were large screen TVs on every wall, broadcasting the Republican National Convention and its theme, “Make America Safe Again.” The waiting room was quiet and tense. There was an older couple next to me. The man wore a US VET ball cap. He told me he was there for a check-up after a near-fatal aneurism. Dr. Spetzler had saved his life. It was hard to hear him when he spoke because the convention goers on the TVs were so ravenously enthusiastic about their candidate that the room seemed to erupt into Bieber-Fever shrieking every few minutes.

“We need a total and complete shutdown of muslims entering the United States,” Donald Trump has declared, and as I watched the convention, the speakers who seemed to get the loudest shrieks of approval were the ones who talked about the need to strengthen our borders. Our country’s problems are clearly the fault of those nasty, no-good immigrants.

Are these the same immigrants that are known for their expertise in solving complex neurosurgical problems? The ones who spend every waking minute dedicated to saving the lives of Americans?

We chose our surgeon, Dr. Ossama Al-Mefty, because of his unparalleled skill and experience, not to mention his complete devotion to caring for his patients, regardless of their background or religion. But hey, shut those borders down! We don’t need any more smart, dedicated people in this country.

*****

by Susie Rinehart

Brave Over Perfect

I come from a long line of strong women. My mother’s mother taught me how to hold a shovel, my father’s mother taught me how to hold a cigarette. People called me tough, independent, and smart. It was a great childhood, and for that I am truly grateful, but I was ultimately clueless when it came to making big decisions about relationships, love, work, and spirit. No one taught me how to be curious about my emotions (Why bother?) or how to take care of myself (Don’t be so selfish!). There were certain kinds of brave that I was good at: I could run up mountains and dive head first into giant waves. But there were other kinds of brave I needed to develop: how to stay true to myself in a crowd, how to face conflict, and how to keep trying when it doesn’t turn out perfectly.
The opposite of joy is not sadness, but perfectionism. When I am straining to do all parts of my life well with the hope that I will rise above confusion and criticism, that’s what I call perfectionism. The world doesn’t need us to be perfect, it just needs us to find the courage to contribute to the common good.
These strong women raised me to believe that I could be anything I wanted to be. But the way I internalized that message was that I must be great. And there were many times that I didn’t feel capable of being great and so I gave up. All I ever saw were the outer, perfect performances of women in my life: my mother, in a graduation gown, receiving her second advanced degree, and her friends’ immaculate homes and flawless appearances. I never heard about their inner conflict, so that when I encountered doubt or my own imperfections as the leader of a school, as the director of a company, and as a mother, I thought that the confusion I experienced was uniquely mine. I assumed everyone else knew exactly what she or he was doing.
You may feel that way sometimes, like you are not good enough, or brave enough, or that there is something wrong with you because you can’t keep up with the world’s expectations. There is nothing wrong with you. Just ask people of all ages for their stories. Then listen to the constellations of suffering and beauty that make up who we are.
In teaching adolescents for over twenty years, I have had the privilege of listening to their biggest questions and concerns. Here’s how one girl I shall call Annie sums up her experience moving through the maze of defining herself. “We are like glass lanterns. There is a bottom: we are lesser than—and there is this top: we better be perfect—and then there is this hollow middle with an elusive wick, waiting for us to strike the match.” Maybe you too were conditioned to be good at striving for the top, reaching for external goals and illusory perfection, but does it leave you feeling anxious and hollow?
As a teacher, I heard this question a lot: “Is this right?” “Is this answer on the test right?” “Am I doing this essay right?” I understood my students’ desire; I had spent plenty of late nights in school erasing what I had written and starting over in order to get it right. But now the challenge is: How do we cultivate enough courage to truly banish the idea that we have to get it right before we begin?
The urgency to take on this challenge hit me one day, far away from home. I was traveling with students in Nepal on a cultural exchange. At 12,000 feet above sea level, we made our way along a narrow path that wound through cultivated gardens and modest homes. We came around a corner and there was a young mother with three of her children walking towards us, carrying large bundles of firewood on their backs. When we met in the path, Jackie, the student in front of our small group, put her palms together and bowed low to the woman to greet her. “Is this right?” She called out to me, at the back of the line, while the young mother bowed back at her. Jackie never saw the woman’s wide, affirming smile, because she was looking back at me, seeking approval. She also never saw the children rushing to embrace her.
It’s not Jackie’s fault. She was used to a system that rewarded her for playing by the rules. It made sense that she was trying to make a good impression, but the moment made me wonder, “What are we missing in our effort to get it right all the time?” Real connection. Abundant joy. Balance. Creativity. Plus the chance to play more, to tinker and try things, to roll up our sleeves and be apart of the teams that are innovating to solve big problems with no single, right answer.
The world cannot wait while we sit alone at our desks, erasing and starting over, trying to get it perfect. The world needs us to iterate and to expand the limits of what is possible if we want to make change. The only thing getting in the way is that we get stuck trying to find the single, right way. We don’t know who we are and what we want sometimes, and how to move forward. The more clear and grounded we can get about ourselves, the more impact we can make. But we have to be willing to do the work of discovering who we are.
Here’s where I want to take your hand in mine and say, “Let’s go find a different way together.” Let’s practice being brave over perfect on a daily basis until we strike the match and follow the light, full of joy.
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