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Learning How to Fear

A winter storm came through Colorado last week. Four feet of snow fell in 48 hours in the little town of Nederland, just thirty miles from where I live. Many rushed away from the mountains, trying to get to low ground before they closed roads and lost power. We rushed toward the storm. Kurt and I thought that if we went to the mountains, we could be some of the first people at Eldora Ski Resort, carving fresh tracks in historic levels of powder. 

What happened instead was that we got snowed in. We slept at our friends’ home, but when we woke up to 36” of snow, we were unable to get to the ski resort. We couldn’t even get out of the driveway. The snow overwhelmed the plow trucks, landing one of them in the ditch. They closed the ski resort and most roads remained impassable. So instead of an epic day of skiing, we spent two days helping our friends shovel their driveway, decks, and roof. 

When the snow kept falling, fast and deep, we slowed down and absorbed the silence. I caught myself staring out the window for a long time, in awe of the natural design of a pine tree, how its branches bend without breaking. Then I thought about the bears hibernating in this same silence, how their heartbeats slow from about 50 beats per minute to 12 beats per minute all winter. I curled up under a blanket and imagined slowing down to bear speed. 

Last month, because I wrote a blog about Willie Nelson, a friend told me about a podcast called “One by Willie” in which famous people talk about a single Willie song that impacted them. In one episode, Brené Brown, sociologist and storyteller, spoke about Willie’s version of “Amazing Grace.” The way he sang it made her realize that she had misheard the song her whole life. She thought the lyrics were, “It was grace that taught me how to feel.” But when Willie sang, she heard the true lyrics which are, “It was grace that taught me how to fear.” How could that be? 

After that podcast, I listened to “Amazing Grace” on repeat. I, too, misunderstood the song for years. And now it deeply resonated. I don’t need to be afraid of fear or its cousin, anxiety. 

I’ve been through enough sh** that I know how to fear. 

I can drive toward the storm because I’ve been through storms before, and I know they are not permanent. It’s tough to remember that when I wake in the night in a cold sweat, anxious about my scan results, my family’s health, money woes, or bloodshed and violence in the world. But now Willie and the famous hymn remind me that “Grace taught me how to fear, and grace my fears relieved.”

But what exactly is grace? Kindness, forgiveness, trust, undeserved, unconditional love? All of it, I’m guessing. It is also moving with elegance and fluidity, something fear prevents us from doing. So we have to learn how to fear better. 

The goal is not to banish fear, but to learn how to be afraid, and move through it. 

And we do that by accepting the fear, not denying it, and paying attention to what we can trust. Can we trust that eventually our load will be lifted, the sun will come out again, and life will continue?

Emily and Amelia Nagoski, two brilliant sisters, wrote Burnout  pre-pandemic about unlocking the stress cycle. The brain research they describe is that when we push stress down or away, we never process it properly and we end up storing it in our bodies until we burnout. I believe that something similar happens with fear. 

We have a new goal: to learn how to complete the fear cycle. 

When fear rises, don’t try to make it go away. Instead, ride the emotion, move your body, cry, scream, breathe, and feel all the feels. Then get up and do something creative. Creativity is a powerful antidote to spinning out because of fear. And for reasons I don’t quite understand, it is the final step in completing the fear cycle. 

My go-to creative act is writing, for Kurt it is playing guitar, for Hazel it is singing, dancing, or watercoloring, for Cole it is repairing an old car engine. What is it for you? How can you learn how to fear better

Whatever your routine is to complete the fear cycle, do it. Don’t let it get stuck in your body. Write down those go-to things that help you to complete the fear cycle on a sticky note and put it on the bathroom mirror. Then remember that fear is something we learn how to manage, not something we run and hide from. We can learn how to fear better with practice.  

For the skiers out there who are curious, the sun came out and they opened the ski mountain. But by then, Kurt had caught a ride home. I stayed because the peace of the storm was good for my nervous system. And because our friends were kind enough to let me stay. So when they opened the resort, I was one of the first people on the hill. Only the temperatures had warmed; It was not the light, fluffy powder I expected, but more like heavy cement. 

I looked down from the chairlift to see five people on one of the steepest slopes. No one was moving. They were at a complete standstill, unable to make it through the deep snow. When it was my turn, I hugged the shady edge, pointed my skis downhill, leaned way back, and let them run. “I know how to fear!” I screamed as I sped past the stuck skiers. I laughed at my own ridiculousness and eventually fell into four feet of forgiving snow. Then I hopped on the chair to go back up and do it again.

It reminded me of what I learned by staring at those pine trees. They bend but don’t break, and when the sun comes out, they let go of everything they are carrying. That’s a pretty good way to make it through a storm. 

Love,

Susie

Everyone Has a Story

They are all better writers, with better stories to tell. 

As a college admissions and essay coach, I hear how loud the inner critic can be when it comes to writing about ourselves. My students believe the negative inner voice that tells them that their stories and storytelling skills aren’t good enough. There’s also a misconception that the college essay needs to be about overcoming adversity. It doesn’t.

Adult writers believe a similar myth; only significant, earth-shattering stories deserve to be told. It’s another way that Fear, disguised as logical, smart Perfectionism, gets in the way. Luckily, many of us have been dealt a pretty good hand in life. So we may not have a giant challenge to describe. Thank goodness, I say. 

I believe that everyone has a story to tell. 

Yet most of us don’t believe our stories are worth telling. 

Once I had a student we’ll call Toby. He told me for two days straight that there was nothing interesting or special about him. So I asked him about how he spent his summers. Well, I used to harvest dates on my grandfather’s farm. My ears perked up. But that was before I had my identity crisis and broke up with the Church. I smiled. Nothing interesting to say at all. 

It turns out this boy was named after one of the founding members of the Mormon Church, but because of his sexuality, he felt abandoned by the very church that gave him a sense of belonging as a young boy. His college essay is about his relationship to his grandfather, to the farm, and to himself. “While we may disagree on religion, what my grandfather and I have in common is a dedication to kindness, hard work, and a love for nature. The date farm is a working ecosystem. Every plant, animal, and person contributes to the system. I believe, like the date farm, every person on the planet has a purpose and a place.”

His case is dramatic – an extreme version of believing he had nothing to say, only to uncover a powerful story. But it happens to me in my work every single day.

Recently, a student insisted that she had no good ideas for a topic. I asked her how her work at the pizza shop was going. She said, “I had my pay deducted for putting too much cheese on a customer’s pizza.” My ears perked up. Her essay ended up being about having an abundance vs scarcity mindset. “The idea that there is a lack of cheese, a lack of love, or a lack of colleges is absurd. I choose to have an abundance mindset, believing that there is enough to go around.”

We tell stories because we are human. But we are also made more human because we tell stories. Amanda Gorman

Stories and storytelling are essential parts of being human. No other species has this ability. We need to tell stories to reunite with who we are. Personally, I write to connect to myself and to others; it is an exercise in empathy.

One of the best ways to begin is with a ten-minute free write.

We need a little pressure, (that’s the timed part), we need to know it’s going to end soon (that’s the short part), and we don’t need to worry about spelling or grammar or finding the perfect sentence to begin (that’s the free part).  

I say to my students, No one is going to read this. Keep your writing loose and easy. When you get stuck, don’t stop. Write the words “I don’t know” or “idk” or “I can’t remember” until something pops into your mind.

Set your timer for 10 min. Start with the prompt, I remember

What are we remembering?

For today, tell me about a time when you were doing a task or working a job where you were in over your head. Or tell me about learning to drive or serving tables or being in charge of other people’s children.

Get inside the moment(s) as you remember. What do you see, feel, hear, smell, taste?

Don’t think. Write. Memory runs through our heart and along our veins. The best way to access it is to bypass the logical parts of our brain and just start scribbling. Try the 10-minute free write.

Take risks and choose brave over perfect as you go. You are a beautiful, storytelling human. 

Love,

Susie

From Impossible to Possible

Five minutes after choosing Possibility as my word for January 2024, I had the most negative temper tantrum because everything felt impossible. The feeling began when I woke up and it was -9F (-22C), the dog refused to go out, Kurt was sick, my nerve pain had returned in my leg, and there was no milk in the house. I wrote 2025 in my journal, as if some part of me knew it was best to just skip 2024. 

Then I remembered that I had signed up for a pottery class way back in 2023 when life was easy, and it started today. A small group of female friends and I were going to create a muse out of clay in three days under the brilliant guidance of Caroline Douglas. But today, the idea felt frivolous, indulgent, even crazy to spend three mornings doing Arts and Crafts while I was convinced we were going broke, I needed to get back to work after the holidays, and someone had to get groceries. But I went to the pottery class anyway, hoping for a little grace. 

In the studio, I thought I would feel grounded, doing something with my hands. Instead I felt anxious, incompetent, and full of comparative, sulky energy. Even when Caroline set us up with beautiful molds for our muse’s face and showed us how to assemble the body, I still felt stuck. 

My classmates were quietly creating masterpieces: a goddess with long flowing hair, a golden-crowned muse with protective evil eyes, a stunning woman with two faces and two moods, and Venus riding upright in a beautiful boat. While they gushed, “This is the most fun I’ve had in so long,” I worked my clay slab with the skill of a kindergartener and a lot less enthusiasm. 

I had imagined that I would make a Gaia goddess, a sculpture I could put in the garden and bring offerings to in gratitude for Nature. Yet the clay was hardening, drying-up, and cracking because I remained stuck and indecisive, overwhelmed by the grandeur of my vision in relation to my diminutive skill.

Then I added a single leaf to my goddess’s waistline, and I felt better. I used Indian wooden blocks for the leaf pattern, and pressed lace and river stones into her skirt. I attached more leaves to make a belt. I liked what I was creating. But then one leaf fell off, then another. 

I thought, I should start over. I didn’t say it out loud, but right on cue, I overheard Caroline say to someone else in the class, “Don’t ever start over, clay is forgiving. You can always repair what you’ve done. Repair. Repair.” 

Repair: from late Latin repatriare: ‘return to one’s country.’  To put together what is torn. It turns out that to fix what is broken I needed to return to myself (or drive to Canada ;). The problem was not my lack of skill, it was that I was trying too hard to be like the others. I looked at the face of my muse and she seemed to whisper back, “You can’t get this wrong.”

On Day 2, I added elements that were deeply personal, like a backbone, as a kind of prayer and homage to my spine. We each have 33 vertebrae, creating the strongest bone in our body. My spinal column has just 26 vertebrae, with 6 fused and one removed, yet it is perfect. It is flexible and resilient. The source of my inner and outer strength. As I shaped her spine, I felt calm.

On Day 3, there were two problems. After days of freezing temperatures, the studio heat wasn’t working. It was so cold that Caroline suggested we cancel the class. Now, things had shifted enough inside me that nothing could keep me from the workshop. So we refused to cancel. Instead, everyone showed up and we worked in our parkas and hats, dancing to keep our toes warm. The second problem was that my muse’s leaves kept falling off. 

Caroline walked over to where I was holding the torn and broken leaves and said, “Wet the slab, add more clay, crosshatch, and connect again.”

Connect again. Repair. 

With Caroline’s experience and encouragement from the amazing women in the studio, I felt my way into my word for 2024, Possibility. Maybe I am healthy. Maybe Kurt will feel better soon. Maybe Hazel is picking up milk from the store right now. My sculpture is beautiful, maybe I am too. Maybe it will all work out. Just because I don’t know how, doesn’t mean that it isn’t possible. 

Love,

Susie

  • My Neurosurgeon called with good news! My scans look good – the nerve pain is likely caused by post-surgical scar tissue and inflammation on my spine. It may stick around for a long time, but I can manage it with meds and strength training. Yay!!
  • It’s now 48 degrees F (9 Celsius) and sunny outside!

 

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

***

What We’ve Done to Women’s History Month

Did you know that International Women’s Day was started in 1910 by a Ukrainian-born woman named Theresa Malkiel? She was a labor activist who collaborated with Clara Zetkin in Europe and Helen Todd in the U.S. and thousands of other female laborers around the world. They marched to demand voting rights and better pay for women.

More recently, what we’ve done to International Women’s Day and Women’s History Month is change it from a collective movement for equal rights to a spotlight on individual female achievements. That shift does two things: 

1) It makes many women feel like they are supposed to achieve great, heroic things on their own

2) It diminishes the need for men and women to work collectively for workplaces that are truly equal and inclusive. 

The interesting thing about Theresa Malkiel, Clara Zetkin, and Helen Todd, is that they all admitted that it wasn’t until women were workers in the formal economy that they saw themselves as worthy of rights. 

As women, they didn’t see their worth or value. 

In the spirit of collective action, I asked my friends in four different countries,

What does it mean to be a woman in the workforce? 

One friend reminded me: 

“Women, especially women of color, have ALWAYS worked. It’s often unpaid, often unrecognized labor, while their counterparts’ efforts are considered formal work and included in the formal economy.”

 Yes!

This is why the collective is so powerful. She gave voice to an essential aspect that I had missed. Women have always worked, and yet that work is perennially undervalued. 

“Together we are invincible” –Isabel Allende

I asked more wise friends to chime in. 

Being a woman in the workforce means…

  • Pumping in a tiny closet on a 20 min lunch break during a 12 hr shift because no one thought of these things
  • Little hands reaching for me, asking me not to leave to work
  • Ignoring certain colleagues and comments 
  • Feeling guilty about leaving my kids, then feeling guilty for leaving work to go to kids
  • It means exhaustion and pride
  • Feeling like I have no idea what I’m doing
  • It means fighting for space to be an equal and valued member of the team
  • Trying to lead in a way that brings my whole self to the table
  • Being patient and sticking to my guns
  • It’s a dance between biting my tongue and and speaking up, and often feeling like I’m passing the buck to someone else to speak up 

They also gave voice to what they love about working in the formal economy:

  • Reading the room
  • Knowing the numbers
  • Finding things to learn in every project and in every person
  • Feeling alive and empowered
  • Connecting with people all day
  • Contributing
  • Having a voice
  • Making a difference because I make my own $
  • Being a role model for my kids and my nieces and nephews

Their responses resonated with me and gave me a feeling of connection that I’ve been craving for, well, two years now!

What we’re going for in life is not just outer achievement, but inner strength and a state of peace and wellbeing. Helen Todd spoke about the goal of equal rights for women as “Bread and Roses” –not just ALL the work, but ALL the pleasure, too!

International Women’s Day and Women’s History Month is about our collective courage, not individual heroism. 

This month, every month, it’s not just about showing up and honoring a few individual heroes, it’s about HOW we show up each day for ourselves and for each other. 

It’s about how powerful we are when we see ourselves as having value. It’s about linking arms together to get sh** done at home, in the formal workplace, and everywhere in between until we finally close the gap in gender equity.

Love,

Susie

***

image credits:

top: Internationalwomensday.com image of 2022 theme #breakthebias

middle: Chicago labor organizing poster. Image courtesy Library of Congress, https://www.loc.gov/resource/ds.13465/

bottom: poster from women’s march in 2017 from womenshistorymonth.gov