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Going on a Bear Hunt to Confront Life’s Obstacles

There’s a children’s book that sums up my experience with confronting life’s obstacles pretty nicely. Remember Going on a Bear Hunt by Michael Rosen & Helen Oxenbury? A young family sets out on an adventure to find a big bear, only to encounter obstacle after obstacle in their path.

We’re going on a Bear Hunt!

We’re gonna catch a big one!

When life throws one of its many big, scary curveballs at us, we humans tend to want to make it go away. We set off for a cure for the cancer or the broken heart–We’re gonna catch that Big Bear. But our enthusiasm takes us only as far as the first hindrance. In the children’s story, there is one block after another. There’s tall grass, wide rivers, deep mud, swirling snowstorms and gloomy caves. At one point, the family faces a dark forest.

Oh no! A forest!

A big, dark forest.

We can’t go over it.

We can’t go under it.

In April, I learned that another tumor at the base of my spine was growing. The change felt overwhelming and frightening. I did not want to have surgery on my spine, again. It wasn’t that I didn’t want it removed. I did. I couldn’t continue to ignore the intensifying pain that ran like electric eels through my left hip and down my leg. It was that I knew the surgery would be complex, if even possible, and I wanted a shortcut. I wanted to avoid the possibility that I could permanently lose the ability to use my left leg as they chipped stubborn tumor cells off delicate nerve endings. But I also knew I wanted to be back in my body, living fully.

Oh no!

We have to go through it!

If the tumor was removed, and I was alive, was it worth it? Of course. But it was still painful to consider “trading body parts for time,” as writer Laurel Braitman puts it poignantly. The challenge was where the tumor in my lumbar spine was hiding; it hugged tightly to nerve roots that dictate function and strength in my left hip, leg, and toes. A support group I attended on Zoom suggested that my husband deliver my lunch upstairs each day, so I never had to go downstairs again. I walked up and down my stairs that night like an incantation. There was no shortcut. In the picture book, the children make it through the forest this way:

Stumble trip!

Stumble trip!

Stumble trip!

The other challenge was that the area had already been radiated. Getting access to the tumor meant removing bone that tends to crack and crumble after maximum dose radiation. To take out the tumor, I would sacrifice stability. To regain stability, I’d likely need serious reconstruction, limiting mobility significantly. This felt like making it through the forest only to be staring at a wide river. 

Oh no! A river!

A deep, cold river

We can’t go over it.

We can’t go under it.

The tumor was not responsive to chemo. I had already received the maximum allowable radiation in that area. No clinical trials were currently an option. But if I did nothing, the tumor would likely grow and sever my nerves on its own. 

Oh no!

We have to go through it!

Back to doing research and making calls. Now, I know I am ridiculously fortunate. I’m white, privileged, with excellent health insurance that recognizes that rare diseases require outside-home-state care. The disparity in outcomes between white and black, low and high-income cancer patients is stupefying. It all begins with access. I’m tearfully reminded of this during every frustrating call to insurance companies. Imagine if English were my second language? Or if I didn’t have eight hours to dial and re-dial until I get through to people who can help? We can do so much better. Then someone does. Karina, an insurance associate, approves the scans I need to get the surgery.

Splash splosh!

Splash splosh!

Splash splosh!

Like the children in the story who come across the river, and step across it on mostly-hidden stones, I leaped from one submerged stone to the next. This, it turns out is how we face cancer or any big challenge; it’s not the Big Bear Hunt cure. It’s the “Splash Splosh Stone” approach, focused on progress.

There wasn’t anyone in Colorado with experience with Chordoma. Then Dr. Al-Mefty, my former superstar surgeon, told us he “only” specializes on skulls. Splash. Luckily, he recommended Dr. Gokaslan. Splosh. Dr. Gokaslan would see me. Stone. He set a date for June 14.

Oh no! We have to go through it!

I really, really wanted to back out of this surgery. I wanted to find a shortcut with less suffering. You know, one where I would get to keep mobility and strength, have some summer, and stay tumor-free.

The shift happened for me when I recognized that the obstacles in my path are not in the way of me living, they are living. 

They are where I find deep connection, kind humanity, creativity, humor and community. They are where I get to practice being the human I want to become. They are the path. I haven’t failed and my body isn’t failing me, it’s just time to level up and face the next adventure.

Oh-oh! A CAVE!

A narrow, gloomy cave.

We can’t go over it.

We can’t go under it.

Oh, no!
WE’VE GOT TO GO THROUGH IT!

As I waited for the anesthesia to work before surgery, I imagined the similarities between synapses of a nerve, the roots of a tree, and a river delta.

 

 

 

 

 

 

 

From above, they look the same. Deep, structural resilience. Maybe everything will be better than expected.

 

When I woke up post-surgery, I immediately tried to move all my toes. They wiggled easily, equally, and did a little dance. The doctors and I became teary. My nerves somehow weathered the six-hour surgical beating and bounced right back. (My friend Jill points out, “A surgical beating has nothing on kids and what they do to our nerves–so of course they’re tough!”) Ha! Again, what does it take to trust that we have deep, structural resilience? wiggling toes

The children’s story ends in bold lettering: WE’RE NOT GOING ON A BEAR HUNT AGAIN!

We know the truth. We’re getting older, and life keeps throwing us scary curveballs. We’ll have to get out from under the covers, go back through the cave, the snowstorm, the forest, the mud, the river and the tall grass. But we do it because this crazy, beautiful life is worth it. And we do it together to steer for the best possible outcome and the most life along the way.  

The adventure draws us back in. It’s no wonder that when the book is over and all is calm, the tiny child you are reading to looks at you with big eyes, pats your hand, and says, “Again!”

Love,

Susie

walking post surgery



4 Steps to Coping with Uncertainty

This blog is about coping with uncertainty. Recently, someone asked, “How do you do it? You’re so good at facing the unknown.” And I laughed because I don’t feel good at it. I much prefer to hold the steering wheel and the GPS. But I am getting better at handling uncertainty. Here’s how:

#1. I get angry. When I stare into the dark of what may happen with this surgery or what may happen to my children in the future, it’s so overwhelming that I lash out at the person standing closest to me. I slam doors. I yell at those who leave towels on the floor and I argue with Kurt over who broke the lawn mower. I pack a bag to run away from home, because no one is being attentive enough to my needs. I get all the way to the car, with the key in the ignition, before realizing, “Oh, wait. I’ve done this before. When I am in fear of the boogeyman, death, or uncertainty, I look for the nearest exit out of my pain.” Now I know that I have to get mad because that emotion is more available to me than sadness. And I need to feel to process.

When I am getting angry over the littlest thing, it means I am processing uncertainty. In fact it means I am making great progress. As Francis Weller says, “No one wants to hang out in pain. But it is inevitable. So how do we use it as material?”

#2 I make something. When I am creative, I can’t be worried. There’s brain science to back me up on this. “Crafting is a natural antidepressant. It regulates big emotions and elicits flow.” All I know is that when I draw or paint or build something, fear fades. Curiosity takes over. Creative thoughts replace anxious ones. What do I want to make? How big? What materials? This time, I drew a giant bird’s nest on a piece of white cloth; the start of a painting for the front wall of the house. This is not art with a capital A. This is copying an illustration I found online. Then it’s scribbles and sketches, Tempera paint and utility brushes. Why? I wanted to make something that said, “Spring is here! Rebirth and recovery happens.” Then my five year old neighbor asked, “Will baby birds come out of the eggs?” So, early one morning, I painted cracks in the eggs. And in a week, who knows, maybe a few bright beaks will appear.

#3 I seek to serve. It’s tough to look outside of ourselves when we are in the middle of a pity party, but I swear it’s the doorway to freedom. Instead of focusing on what is being taken away from me, I focus on what I can give. I give thanks for irises and peonies, for rhubarb and morels, for parents in good health. I give my neighbor a ride to yoga, my friend a vase of lilacs, my dog an unleashed run. I give money to the organizations who are positive forces for change. I write down three specific moments that I am grateful for each night. I seek to serve. This season, the way I am serving is self-serving. Since everyone deserves the tools to write a great college essay, I’m finally creating an affordable video course for all. Stay tuned!

#4 I surround myself in Nature. I drop everything and follow a river upstream or lie down under the stars. I feel a part of something larger, a community of beauty and abundance, and it makes me feel larger, too. When I feel the immensity of the planet, I feel that we are capable of immense things. It reminds me that all this beauty happens without me doing a thing. Maybe the universe is benign. Maybe all will be well. I don’t have to force positivity, and be convinced that everything will definitely work out perfectly. I only have to believe that it is possible for all to be well.

There’s a #5, too…about surrender and trust…but that’s for another blog. 😉

So. When I don’t know what is going to happen and I feel out of control, I get angry, I make something, I seek to serve, and I surround myself in Nature. In that order. It’s not pretty. There’s a lot of resistance. But the only way out is through. It’s not about being bad or good at facing uncertainty, it’s about knowing what works for you to get through, rather than exit, the pain. Remember that together, we can get through anything.

Love,

Susie

Carry grief in one hand and gratitude in the other and be stretched large by them –Francis Weller

I’m a Pain in the Neck; Now I’m also a Pain in the A**

We must let go of the life we have planned to accept the one that is waiting for us. –Joseph Campbell

I need another, smaller surgery. I’ve had intense sciatic pain for a few months (part of the reason why I haven’t been writing). I’m so grateful to be under close watch because the doctors found the culprit: a small blip on my lower spine (L5/S1) which they think dripped down from the original tumor. I’ve had the maximum amount of radiation in that area, so surgery is our next best step.  

It’s gardening season, people! It’s time to weed out what no longer serves us. This little punk tumor is no longer serving me. What no longer serves you?

When? Wed. June 14th, at Rhode Island Hospital in Providence, RI. I’ve been told that this is a wonderful, nurturing date. And that it is Flag Day?! 

Who? We’ve chosen Dr. Gokaslan, one of the leading experts in spinal tumors because Dr. Al-Mefty “only” specializes on the skull. Dr. Gokaslan is the same doctor who didn’t operate on me in 2019 because of a hairpin turn of events

Recovery? Acute recovery period is about 3 weeks in RI. Then continued recovery at home for several months.

Here’s the approx. timeline:

June 14-21: 7 days in Rhode Island Hospital in Providence. Kurt will stay at an AirBnb nearby. Kids will stay home in Boulder, taking care of Leo, the dog.

June 21-28: I’m transferred to Newport Hospital Rehab Facility in Newport, Rhode Island for 7 days in the hospital to retrain my brain to use new nerves to walk well. Kurt returns to Boulder.

June 28: Ready to go home (fingers crossed) to continue to recover! (We know this is a good date because it is our friend Gideon’s birthday!) I may need to stick around back east until July 5 to be near my doctor.

To remember:

  1. This is spinal surgery, not skull or brain.
  2. I am 99% healthy–these tumors have nothing on me.
  3. My spine will be fused at the bottom now, too. Since the tumor is in the vertebrae at L5/S1, they’ll need to take out bone and stabilize me with a fusion and screws into my pelvis. I used to be just a pain in the neck, but now I’m also a pain in the a**! 
  4. Because of where the spot is, there’s a risk to the nerve that goes down my left leg. My surgeon says it is possible, but not likely, that it will be damaged for good. (If I leave the tumor in, it IS likely that I will lose function in that leg.) I’ve been grieving the potential loss of feeling or function in my left leg. But I watched a 3-legged dog hike a mountain the other day and she inspired me to focus forward on how to adapt.

How to help: 

  • On June 14, light a candle and picture the tumor sliding off the bone and nerves easily
  • Imagine me healthy, strong, and home by June 30, in time for Kurt’s band’s gig at the Louisville, CO street fair. @theintolerablesband 
  • As for Kurt & the kids, I think they are all set, but we’ll keep you posted 

Dr. Al-Mefty (my skull surgeon) once said, “Susie, you are a fighter. This is not the end, nor is it the beginning of the end. It is just another challenge, and you are good at those.” 

My smart-a** self says, “Really, Universe? THIS is what I’m “good” at? But what makes me “good” at challenges is that I don’t feel alone. I’m so grateful; it’s not lost on me how privileged I am to have the care that I receive. And, I am grateful for YOU for being there with me every step of the way. We all have our own mountains to face, (and we all have a sore neck, knee or a**)  but I firmly believe that together, we can do anything.

Love,

Susie

Run Toward the Danger

In ten days, I’m running the COLDER Bolder. Yes! I’m running again! Repeat the Sounding Joy! It’s been six years since I last ran. It feels amazing to run my favorite trails again, with dogs and friends, letting the dog off the leash, and letting my soul off leash, too.

My goal is to complete the 5K “race” on December 10th to raise funds for Chordoma Cancer research, for a BIG, new, important research project. (see below)

The road back to running has been tough and surprising. I learned a lesson that might help you with whatever pain or fears you are carrying right now. It is a lesson that writer Sarah Polley applied to overcome a debilitating concussion and past traumas in order to write her incredible collection of essays, Run Towards the Danger.

I laced up my running shoes as soon as X-rays showed that my neck, with all of its hardware, was stable and solid. I was thrilled to feel the wind in my hair again. I felt elated and vital. 

But the minute I felt nerve pain in my neck and spine, I stopped. I lay in bed, awake at night, my mind lit up like a car dashboard with several “check engine” lights on. I was terrified that the pain I was feeling was not caused by muscle inflammation, but tumor growth. I was convinced that I was experiencing symptoms of tumor activity, not regular exercise ache on muscles that had not been in use in six years.

In the morning, I called my friend Lisa who is a phenomenal Physical Therapist. She examined me and emphasized all the important points about talking to my doctor and getting MRI scans. But she also knew I had clean scans two months before. She looked at me and said, “Your brain hasn’t learned that the threat you experienced six years ago is no longer a significant threat. Your tolerance for pain has dropped considerably. You need to increase your pain tolerance to re-train your brain, so that it doesn’t alarm every time you have minor pain.”

I need to increase my pain tolerance? That floored me. I proudly imagined myself as someone with a high pain tolerance. I didn’t realize that time, age, and a little pandemic can mess with our greatest superpowers. 

My nervous system post-surgeries and post-pandemic is hypervigilant and overprotective. It’s like a helicopter parent who doesn’t know when to back off. It alarms when I do anything scary. Like run. Or socialize in big groups. Or write this blog. It wants to protect me from harm, but it’s narrowing my life.

                             “The fear of pain is likely worse than the pain itself.”–Dr. Adriaan Louw, PT, PhD

The good news is that we can raise our tolerance for discomfort. We need to re-train the brain to alarm only when necessary, giving us more space to move, breathe, write, run, and live!

Of course I know that I have to be careful. I am living with a chronic, terminal condition. But the side effect of being too careful is that I don’t live fully. Instead of backing off my running, I’ve kept going, while also getting scans every three months to make sure there is not a damaging physical threat. The key to success in growing my tolerance for pain is gradual exposure. I run 5k now, not 50k. And I started with 0.5k. 

I also have a mindfulness routine each morning that is more like a coffee chat with my brain. I remind it of my clean scans. And I listen to all its fears, paranoias, and worst case scenarios. I feel each one in my body. Then I gently ask my brain to picture a calm, happy moment. It’s like an 11-minute pep rally for peace to begin my day. 

As snow falls softly outside, I wonder, Are all of our nervous systems hypervigilant now? What do we need to do to be defiant and retrain our brains to stop alarming all the time? 

How can we gradually increase our exposure to what scares us or has hurt us in the past, so that we don’t narrow our lives, but rather imagine that we have “grow(n) thin to a starting point” as Mary Oliver says?

And begin again to be brave. 

Love,

Susie

P.S) I am running in the COLDER Boulder 5K on December 10th to raise funds for The Chordoma Foundation and a vitally important new research project that could open the door to brand new treatment options for me and others like me! My goal is to raise $2022 in 10 days. Can you pitch in $20 today? Canadians can make a tax-advantaged gift to this project here; U.S. individuals can do so here.

The work will be led by renowned researchers in my hometown of Toronto, Dr. Gelareh Zadeh, a neurosurgeon-scientist who has deep expertise in chordoma and Dr. Thomas Kislinger, a leading expert in cancer proteomics. Their goal is to discover proteins on the surface of chordoma cells that could serve as targets for emerging treatments — like systemic therapies that selectively target tumor cells, and various types of immunotherapy. Once they identify these markers, they can test if drugs developed for breast cancer, for example, could help chordoma patients, too. This would be a HUGE win!!

Thank you for considering pitching in to make this possible. If you have questions about this project or your contribution to it, reach out to Kenny ([email protected]) at the Chordoma Foundation.

 

The Gift of Mom; a Life of Curiosity over Concern

My mom is visiting on her annual migration from Mexico to Toronto, by way of Colorado. She lives six months of the year outside Guadalajara, six months in Toronto. Many might think it’s dangerous to live alone, in Mexico, as a single woman in her eighties, but she brushes off their concerns. “People underestimate the people of Mexico. And me.”

To Mom, life is meant to be lived as an adventure, full of discovery and learning. 

While I was growing up in Toronto, Mom held an Honors degree in Physical Education. She coached her Track and Field teams to record-breaking victories at the Ontario Provincial finals. (Her way of coaching me was to toss my running shoes outside, then me, and shut the door.)

When Mom was 49, she changed course. She went back to school to get her Masters in Art History. To others, it was an unexpected divergence, but it made sense to her. She loved sports and she also loved Art. Where was the contradiction? Again, life was meant to be lived as an adventure, and one immersed fully in learning and discovery.

When people questioned her decision to switch from what she knew to something new and different, Mom marveled at how people could ignore the gravitational pull of their curiosity. She’d say, “Doesn’t everybody look at a painting and wonder, Who came up with that idea? and What does it say about who we are as humans?” She often took us to the Art Gallery of Ontario in Toronto and had us notice the small details in giant paintings. How many tulips do you count in the bottom right? What else can you learn about it while looking? For Mom, studying Art was the next logical step in a life devoted to discovery.

Each spring, when she arrives at our home in Colorado, we make a new painting to hang on the front wall of our home. It’s kind of a funny thing to do to display Art outside the house, but it makes me happy. I am not a painter, but I love color and paint. Plus it feels good to do something for the sheer delight of it. We include Mom, her grandchildren, and many of the neighborhood kids in the making of the painting. The tradition started when I wanted to paint the whole house a different color and my husband did not. Until we could agree on what to do, he suggested I paint a giant canvas and hang it next to our front door.

Eventually, I let go of the idea of painting our brick house, but we continue to make fresh paintings for the wall out front every season. They are less like paintings and more like posters, with bold blocks of color and almost no shading. Shading takes skill and time, something we don’t have. 

It’s raining outside so Mom, my daughter Hazel, and I work on the living room floor. The Brave over Perfect moment here is allowing the painting to be bad. We think of it as play, not product. We have to work fast before the dog walks across the fresh paint. As we paint, we talk. Hazel asks Mom, “What was it like being in your 20s during the 1960s?” Mom responds quickly, “If you remember the 60s, you weren’t there.” She can always make me laugh. 

Minutes later, Mom wants to show Hazel a picture of Leonardo DaVinci’s “The Last Supper.” She accidentally types into Google, “DaVinci Last SUMMER.” Google understands what she means and offers up images of the famous painting, but it’s too late. The idea is too absurd. Mom takes hold of it and comes up with different scenarios for DaVinci’s last summer. “Can you imagine DaVinci on the beach, frail in a speedo, ordering his last fruity drink with an umbrella in it?” We get the giggles and can’t stop. We have to put our paintbrushes down. 

I’m writing on the cusp of Mother’s day, thinking about the many gifts my mother has given me. Laughter, yes. A love of athletics, literature and Art, yes. But the gift I am most grateful for at the middle place in my life is Mom’s ability to follow her curiosity without concern.

It’s easy for me to be hard on myself when I take the time to paint instead of work or write, for example. I see it as a flaw, like I don’t have the metal it takes to pick one thing and go all the way with it. 

My mother doesn’t ruminate or dwell; she prefers to lean toward what is delicious and delightful.

Today, I am choosing to look at life through Mom’s radiant lens. I am crawling around a canvas on the living room floor with my daughter and my mother, wondering what shade of pink to use for clouds at sunset. I want to capture this moment and frame it. I am keenly aware of how precious it is and fleeting. So while I am already on my knees, covered in paint, I bow down in gratitude for the gift of my Mom. 

Happy Mother’s Day!!

Love,

Susie

 

Don’t Let Go, Let Loose

I’m playing with the idea of let loose instead of let go. Here’s what I mean. To let go completely is too much pressure. But to let loose is bite-sized, doable, a step forward in the right direction. I want to let go of control. I’ve been gripping too tightly to things not working out the way I want them to lately and it’s making me suffer. The Brave over Perfect move this week is to let loose instead of let go. 

A few examples. When my child doesn’t do her homework, I play a high-speed game called “Then what?” in my head. It goes like this: “If she doesn’t do her homework. Then what? Then she doesn’t pass the class. Then what? Then she won’t get into a good Arts college. Then what? Then she won’t make it as an adult, alone. Then what? She’ll end up on the streets with really high credit card debt and it’s my fault because I didn’t teach her responsibility.” Except I’ve been playing this game so long that my mind goes straight from “missing homework” to “kid on the streets” with a heavy dose of “it will be my fault.”

I think, Let go. She’ll be fine. Who cares about homework? But the next minute, I walk into her room, see her on her phone, and lose my mind. Instead of letting go, I pull her school books out of her backpack for her. What am I doing? Why can’t I let go? Well, in part, because she is still my responsibility. So maybe I can’t let go because it feels irresponsible. 

But can I let loose? Can I loosen the tunnel vision I’ve had of her ending up on the streets to a wider view? A view that includes at least one alternative? Like maybe she misses a few credit card payments as an adult like I did, has consequences, learns to take responsibility, and is fine. Like maybe she does end up on the streets, but now I see her busking, and doing pretty well. When I wiggle my tight grip loose like a tooth, I feel expansive, lighter. It reminds me of when I discovered the beauty of the word Sometimes

Another example. A friend of mine’s son didn’t get into the college he wanted. Worse, his two best friends did get in. My friend is watching her son’s pain and feels terrible for him. She is trying to let go, but she can’t. She wants to fix this for him. She keeps calling the admissions office to see if he can appeal. It’s a natural response to fight for the people we love. Until, at some point, there is nothing we can do to help them. 

If we trust the universe when we get in somewhere, then we also have to trust the universe when we don’t.

She is having a tough time sleeping. She tells me, “I know I need to let go, but I can’t.” So we try this idea of “let loose.” Can she widen or loosen her gaze? Can she imagine a future for her son that is less tight than landing at the perfect school? I also suggest that maybe she is trying too hard to let go. After all, our biological nature is to protect our children. But is her long term view of her son’s path too tight? What part of the story can she loosen by widening her gaze?

She calls me back to say that she is sleeping better. “Want to know the crazy thing? She asks. “It is like wiggling a tooth loose. I didn’t have to yank it out; it just fell out on its own! My version of letting loose was saying, ‘I’ll call the admissions office on Friday, but not today.’ I didn’t let go completely, but just a little. Then by the time Friday came around, I FORGOT to call. And I didn’t feel bad. I felt better. Now we’re planning a fun trip to visit the schools that he got into.”

In my experience, it works out well in the end, we just can’t see how from our limited vantage point. But it’s too much pressure to try to let go of our vision of how things should go completely. It feels doable to let loose – to look out at the world with our peripheral vision. It helps me to remember how much my own path has zig-zagged. And how happy I am that I didn’t follow the narrow, tight vision that my parents may have had, or I may have had for myself in the beginning.  

This week, don’t try so hard to let go. Instead, can you loosen just one part of your grip or your view? Can you take one tiny step forward by seeing the world with your full, peripheral vision: expansive, open, loose? Notice how the twigs on each branch are loosening their tight buds and opening up. Tender dark shoots uncurling now. Soon, loose, green leaves waving in the sun. 

Love,

Susie

***

Dear Cole; a letter to my son on graduation

Dear Cole,

I’m writing you from our front porch, on the eve of your high school graduation. 

Life is not easy. You know that. You have lived that. It’s not about building a life that is easy–without pain or confusion–it’s about living life fully, completely, and compassionately. I know you can do that because you already have.

You have backbone in you now that will never leave you. You just have to talk to your courage, ask it for a clue as to what the next best step might be.

Talk to me, too, wherever I may be. As Anne Sexton, the poet, said to her daughter, “Talk to your heart. I am in it.”

I’ve lived a good life, a life full of adventure, and love. You can, too. Go for it! Risk discomfort for meaningful experience.

Do you remember how scary it was to disassemble your car and how fulfilling it was to put it back together, figuring it out as you went along? It’s not a bad analogy for how to make it through tough times. 

Or do you remember the story about the time I was learning to surf and was embarrassed by how terrible I was? And how I didn’t want to tell anyone I was surfing until I got really good? And how, at a party with interesting, cool people, I went to shake a fascinating woman’s hand and just as I did, sea water streamed out my nose? I apologized and tried to explain that I had just been surfing, but not very well, and that I was sorry, and excuse me while I went to get a tissue. Do you know what the fascinating woman replied? 

“When I see the surfers as I drive home from work at sunset, I think, what a beautiful painting! But you–you are not looking at the painting, you are in the painting. Don’t ever apologize for being in the painting!”

Aim for a life where you are in the painting–out in the world, trying things, throwing your whole, messy self into it, instead of waiting for mastery to begin. 

There is a Taoist story of an old farmer and his son. Maybe you know it. 

One day the farmer’s horse ran away.

“What bad luck!” His neighbors said.

“We’ll see,” replied the farmer.

The next day, the horse returned with three wild horses.

“How wonderful!” said the neighbors.

“We’ll see,” said the farmer.

Then the farmer’s son tried to ride one of the untamed horses, was thrown, and broke his leg. 

“How terrible!” said the neighbors as they brought food and flowers.

“We’ll see,” said the farmer. 

The next week, military officials came to the village to draft young men to the army. They saw that the son’s leg was broken, and passed him by. When his neighbors came around once again to say “What good luck!”

“We’ll see,” the farmer said.

Only time can tell the whole story. We never know whether something is good or bad luck when we are in a situation.

Trust that every time you’ve been challenged, you’ve learned something. When you broke your foot, you learned to beat Papa at chess. When I was diagnosed, you learned how to be a good friend to Joako. When Covid cancelled in-person classes, you learned to replace the clutch in your car. It doesn’t help to divide life into good and bad events, because we can’t see the future. 

Experience life as it is and don’t fight the moments. Being an adult doesn’t just happen because you turn 18 or graduate. Adulthood is a process of becoming. You have to earn it by facing difficult times with openness and curiosity, not just fear.

At dinner table arguments with your sister, I see how often you are right. I also see how important it is for you to be right. Remember, don’t take yourself, or the world, too seriously. Go lightly. Practice being kind rather than right. It feels good to “win” an argument, but it feels better to boost others up and see them discover what is right for them. 

Recently you spoke about your need to let go of trying to know everything. You said that you feel more comfortable in uncertainty now. The way you put it was, “it’s okay to wonder.” I love that. It reminds me of something the brilliant Toni Morrison said, “Meet the unfamiliar with unflinching friendliness.”

You are perfect now, you were perfect when you were born. It is okay to wonder. You don’t need to know everything, or to be right all the time, to earn love.

Papa and I love you unconditionally, Cole. Go into the world knowing that, and watch the way the world responds with love.

xox mama
more published letters:

 

The Most Radical Response to Despair

What is the most radical response to despair?

Last night, I didn’t sleep much. I was cycling through feelings of sadness and anger at the stupidity of another mass shooting, this time in my hometown of Boulder, CO. Ten people died, including a police officer. As I write this, I still don’t know the victims’ names. What if we lost a teacher or a friend who was just trying to buy her groceries? (Take Action Here)

Luckily, we are not at home. On spring vacation, we’re staying at a YMCA in the mountains, here to x-country ski and rest. We are safe, but rest is hard to come by. Hazel, in tears, keeps asking, “Why would someone do that?” and “How can we play when others are hurting?”

I stumbled through an answer when we went for a walk, “We may never know why. And it’s okay to feel deep sadness for the victims’ families and to play in the sunshine, at the same time. Play just might bring balance back to this world.”

We discovered a small chapel on the property. We walked in and knelt awkwardly before an empty altar, beneath a simple, stained-glass window. I remembered that in a few days, it would be the anniversary of my friend Lisa’s death. 

Hazel and I cobbled together a prayer for all the families of the victims, for Lisa, for the living who are sad and scared. It all felt too much. My friend Katherine texted me this poem,  

“I am in need of music that would flow

Over my fretful, feeling finger-tips

Over my bitter-tainted, trembling lips,

With melody, deep, clear, and liquid slow…-Elizabeth Bishop, “Sonnet” (1928)

Then, outside, Hazel spotted a fox running toward us. The fox was so light on the fresh snow, it looked as if it were floating. When the fox saw our little dog, it stopped. It sat down. It looked like it was trying to decide if we were bad or good. 

“Yes, we’re capable of the most awful atrocities…

we (also) have a fantastic capacity for goodness.”–Archbishop Desmond Tutu

Before the fox could decide, a car drove by. It turned and floated away, its thick red tail waving like a flag. 

We went looking for solace and found it in wildness. 

I also found it in the back of the car: Easter candy and plastic eggs that I bought last week.

While my family slept last night, I hid plastic eggs filled with candy everywhere in our motel room. On lamp-tops, under folded towels, in the mini fridge, between the covers of a book, in boots and socks, and tucked gently into pockets. 

Cole woke up when he rolled over and broke a plastic egg in his bed. 

Half-asleep, he asked, “What’s going on?”

“Easter came two weeks early. At least the egg hunt part,” I said.

“Why?” 

“Because we need to be on the hunt for goodness today.” 

The kids, now giant teenagers, crawled all over the room, and all over us, looking for eggs. They let out satisfied sighs when they found them. The best music was hearing them laugh.  

Sometimes, I get too caught up in the statistics and the dark truths of living and dying. But today I am a little jacked up on too little sleep and too much candy. I feel more determined than ever to celebrate what we have and to be on the hunt for goodness.

Our kids need our help to see the good in the world. Too many of them are struggling to see it. 

That doesn’t mean we have to turn our backs on the atrocities. It means we double down on action. We discipline ourselves to uncover the beauty and the compassion around us. We make it visible. We say it aloud: “See the way young people were helping older people get to safety in the grocery store? People who did not know each other at all?”  

“Listen. Did you hear that our neighbors are sitting with victims, holding space for them to grieve? And Colorado moms are taking action to end gun violence forever?”

“Look! Over here, see the fox and the snow falling on the steady pines?”

We have to work to find the beauty. To make beauty, too. It might be the most radical response to despair.

How am I right now? Awake, safe, sad, angry, and grateful. The kids are wired on sugar. In a minute we’ll head out into the woods on a hunt for goodness. We’ll look for moose sign, fox tracks, and acrobatic starlings, while holding you all in our hearts. 

Once restored, we’ll go back to Boulder and take the baton from our exhausted neighbors. We’ll show up, pitch in, and do our best to make sure lives were not lost for nothing. #BoulderStrong

Love,

Susie

Take Action:

#BoulderStrong

act.everytown.org

#Morethanthoughtsandprayers

 

Make Waiting Easier; 3 of My Favorite Techniques

Waiting is not my forté. Though I’ve gotten much better at it. I’ll show you how. I am waiting for scan test results (every 3 months I have routine scans to watch for tumor activity), Cole is waiting to hear back from colleges, Hazel is waiting for a package she ordered, Leo is waiting to go for a walk, and Kurt is waiting for all of us to be a little less anxious and cranky while we wait. 

Even if you are not waiting for something in particular, we are all waiting for COVID-19 to be a thing of the past. Aren’t we? Katharine Sweeny, PhD, researches how to make waiting easier and has come up with two surprising techniques. I’ve added a third that works for me and many of my clients. 

Sweeny’s research found that common strategies like distraction and bracing for the worst actually exacerbate the pain of waiting. What helps? 

  1. Focus on the present with 15 minutes of meditation a week

Regret keeps us stuck in the past and worry throws us into an unstable future, so continually recover your balance in the present. Think of three things that you are grateful for today and say them out loud. Feel all the feelings now rather than push them away. And even you restless folks might want to give meditation another chance when you hear about Kate Sweeny’s study. She focused on 150 California Law students who took the bar exam and were waiting for their exam results. During the four-month waiting period, the students were asked to participate in a 15-minute audio-guided meditation session at least once a week. “Meditation isn’t for everyone, but our study shows that you don’t have to be a master meditator…to benefit from mindfulness,” Sweeny said. “Even 15 minutes once a week, which was the average amount of meditation practiced by our participants, was enough to ease the stress of waiting.”

2. Cultivate a sense of wonder. Have a mini awe-inspiring moment

Sweeny and her team did a second study. This time over 700 students took a fake intelligence exam. While they waited for results, the researchers showed one group a powerful video of a sunrise set to instrumental music, a second group a happy-but-not-awe-inducing video of cute animal couples, and a third group a neutral video of how padlocks are made. “Our research shows that watching even a short video that makes you feel awe can make waiting easier, boosting positive emotions that can counteract stress in those moments,” Sweeny said. This study validated my wacky idea that cultivating wonder is a precursor to joy. But how do we define “awe”? Scientists agree that it involves a feeling of vastness. Some simple ways to induce awe include: watch a Planet Earth video, commit to going somewhere to catch the sunset or sunrise, look up at the stars on a dark night, listen to an audio clip of Carl Sagan’s A Pale Blue Dot while watching footage of the Earth as seen from space, consider how the trees have been dormant for months and yet come back to life each spring. How do you cultivate a state of wonder, especially now? Where do you find mini awe-inspiring moments?

3. Flip What If? To Why Not? 

My friend Kari inspired me to try this simple, effective technique. When we are waiting, it’s easy to worry and spiral down the negative “What if?” chain, “What if the medical test results are bad? What if I get rejected from every college? What if my package is lost? Often “What if?” questions feel like predictions and they catapult us out of the present into a scary future. They are not predictions, they are only the mind trying to respond to uncertainty. 

Try flipping the question from What if? to Why not? 

  • Why not picture everything working out for the best? 
  • Why not give yourself permission to rest or play while you wait? 
  • Why not trust that you are resilient and resourceful, no matter what the results?  

Waiting can be brutal. But it doesn’t have to take over our lives. These techniques might be worth trying. Why not? 😉

Love,

Susie

image credit: ignant.com

We Have COVID

We have COVID. Or had COVID (we just ended our quarantine). Kurt tested positive first. We locked him in the basement; the kids left food and water outside his door, wearing two masks and gloves. I disinfected the entire house and sat outside in three pairs of long underwear, thinking. The virus we feared for ten months was suddenly in our home. As one friend put it, it was like being at the moment of impact in a slow-moving car crash. Now what?

The Settlers of Catan. That’s what. Upstairs, the kids and I played that board game for days. Below us, we could hear Kurt typing on his computer (he is a loud typer!), and practicing his electric guitar. Then suddenly we didn’t hear a thing. I texted him. “Are you ok?” 

“Need more Tylenol.” He wrote back. He couldn’t get out of bed. His fever spiked. For two nights, I went bat sh*t with worry. 

Turns out, Kurt had a painful sinus infection on top of COVID. With a round of antibiotics, he recovered quickly. He was among the privileged few. But there was a mental and emotional toll to being isolated in a dark room for ten days. 

He told us later, “I prefer to be alone. But this was different. I could hear you guys but I couldn’t see you. It wasn’t being sick that was hard, it was being invisible. And having the world be invisible too. Mentally, I fell into a dark hole.”

Illness, in my experience, is always a separation. There is the pain of the sickness, and then there is the pain of disconnection from your body and from others. Everyone understands this now, during the pandemic.

The next time the kids and I went to get tested, we were positive. Now all of us had COVID. I was surprised that my first reaction was to hide and not to tell anyone. COVID shame is real. But I also didn’t want others to worry alongside me. How would my immune system, weakened from radiation and chemotherapy, handle this? 

If illness is a separation, then the process of healing is about reuniting with what makes you whole. I needed to connect with Nature and with Kurt again. I needed to reconnect with my body as a healthy system instead of the diseased betrayer of my trust that first got cancer and now COVID.

I finally ignored the urges to hide and reached out for help. Soup and juice and puzzles showed up at our doorstep, reconnecting us to the kind world beyond our disinfected doorway. (Thank you!! @phyllisrogers @rachelleclements @debbiemcgrath @teresachapman)

Here’s what else I did that you might want to try: I chose to reunite with the 99% of my body that was healthy rather than the 1% that was sick. I loved up my immune system. No, really. I lay on the floor and thanked every tiny, mighty, fighting T-cell. I told my body that I loved it. I told my lungs what a good job they were doing. I even pictured the beautiful order of the planets and stars. I thought about how everything fit together and how I was a part of that order. 

I also had my doctor on speed dial and took extreme amounts of Vitamin D, C and Zinc. 

Cancer has prepared our family to handle scary uncertainties. Some things we’ve learned: 

  • Stay firmly in the moment and feel all the feels
  • Do not indulge the anxious “what ifs”
  • Be extra kind and gentle with one another  
  • Love up what works, what is good, and what is funny

Ultimately, we had mild cases with very few symptoms. We slept and slept (have you seen @napministry? Naps as soul care!) COVID finally gave up and went away. We don’t take our privilege for granted. 

How we got COVID is unclear. The obvious reason is that we traveled when we should not have. But the timing and several negative tests long afterwards make it less obvious. The truth is, we don’t know. Like so much else about this disease, we may never fully understand. (And I still don’t understand how to play Catan.) 

Today I went for a x-country ski in the park. I skied and thanked my lungs and the cold blue air after weeks of clouds. I mentally thanked all the cute people skiing around in circles for their company. I feel worn out from endless stress and sanitizing, but I also feel elated. I can trust my body. It hasn’t betrayed me all these years; it’s been saving my life.

Love,

Susie