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

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

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

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

 

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

***