Home » Susie Rinehart

Tag: Susie Rinehart

Dueling Teachers: Willie Nelson & the Dalai Lama

What do Willie Nelson and the Dalai Lama have to do with 2024? February has been one of the toughest months on record, personally. The year of the Dragon came in breathing fire and smoke all over the people I love. I won’t go into detail, but just know that it has something to do with the state of our world, my aging parents (and how much I dislike that inescapable truth), and my daughter being initiated into adulthood abruptly through the tragic loss of a  friend. I just spent a week with Mom and it has me thinking about other octogenarians who help me get through tough times, namely the Dalai Lama and Willie Nelson.

At 88 and 90 years old respectively, they are living legends. The Dalai Lama embodies happiness, despite being exiled from his country for over 70 years. He lost his family, his homeland, and most of his culture, yet he insists that he will live to be 100 because he has so much work to do helping others find joy. Meanwhile, Willie is celebrating the release of his 74th solo studio album. He’s still performing live; he’ll play 18 shows this spring and turn 91 while on the road. He’s survived a collapsed lung, emphysema, and losing almost everyone he’s ever played music with on stage. But this morning I woke up worried. What if we lose him and the Dalai Lama in the same year? How will I go on? 

With Willie, It Was Love at First Listen

Willie’s voice singing “Whiskey River” on my current Sunday morning playlist takes me straight to childhood road trips, first in the family station wagon, then later in the van, with our eight-track cassette player wearing the tape thin on Always on My Mind and Waylon and Willie. Dad would miss highway exits to our destination because we were all too busy singing, “On the Road Again,” or “Mammas Don’t Let Your Babies Grow Up to be Cowboys.” Willie is the reason I wore a bandanna over my hair and ripped blue jeans for too many years. He sings of love and loss, dirt roads and dirt-filled bars. He is the charming rebel who has always remained true to himself. 

Willie brings hippies and rednecks together, as if they all arrived in the back of the same pick-up truck. I remember when Kurt and I saw him live at Merlefest Bluegrass Festival in North Carolina in 2000. We were in a sea of strangers and yet we all put our arms around one another and sang, “Seven Spanish Angels.” I danced my way so close to the stage that I could see how yellow his teeth were, but when Willie looked right at me and blew me a kiss, I knew I was his forever. I knew he loved “Trigger,” his Martin guitar that he’s had for a million years, his tour bus, “The Honeysuckle Rose,” his kids, his four wives, and his horses, and at that moment, I knew he loved me, too.

Now, when I’m struggling with life’s challenges, I turn to poetry. Next, I listen to Willie’s country songs and remember what he teaches me: to hold life lightly, follow my intuition, write down my stories, and face adversity with big-hearted boldness.

Meeting the Dalai Lama

Meanwhile, the Dalai Lama is the ultimate spiritual teacher. I have never heard him preach religion, only kindness. He has offered me lessons on how to endure suffering ever since I first encountered him as a dumb college kid. 

During a conference at my school on “Spirit and Nature” in 1990, I was invited to be a tour guide for one of the keynote speakers. I’m embarrassed to say that when I accepted the role, I had no idea what Tibet was, and went looking for someone named “Dolly” to show around the campus. When I found his entourage, the cloud of monks in saffron-and-wine robes parted and a short, older man in glasses stepped forward. He gave me a wide smile that made his cheeks round like apples. I didn’t know who this man was, but when he touched his forehead to mine in greeting, I saw and felt intense white light wrapped all around him, and me.

I discovered that His Holiness laughs continuously, as though he shares an inside joke with life. He is also endlessly curious and has a thing for wristwatches. He asked to see my cheap digital Timex and giggled as he used the stopwatch feature while we ate lunch. I always assumed that spiritual leaders were reserved and serious. But here was the Dalai Lama playing with my watch like a toddler, laughing heartily, and eating like a ravenous retiree at a free all-you-can-eat buffet. I wanted to know more about this “Dolly” person who walked in a forcefield of light. I ended up traveling to Tibet in my twenties to understand where he came from and how I, too, could cultivate happiness. I have looked to him for inspiration ever since. 

The Dalai Lama teaches me to be curious, laugh easily and often, to be a force for unity, and to look at suffering from every possible angle until I find a hidden treasure in it. Most of all, he reminds me that the antidote to pain is serving others. He says, “Happiness is not something ready-made. It comes from your own actions… I am going to benefit others as much as I can. Love and compassion are necessities, not luxuries.”

This is, of course, not just about Willie and the Dalai Lama. It is also about my mom and dad and how they are still teaching me to find something to laugh about, learn about, and look forward to every single day. “Keep going,” each of my octogenarian guides seem to be telling me. You’re not alone. Every home holds someone who has struggled, or who is struggling now.  There is wisdom to be born in us through suffering that couldn’t happen in any other way. Just keep going.

Love,

Susie

photo credit: “Dalai lama” Webted, cc. 2.0.

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!

 

2023 A Year of Contrasts

Saturday morning, I wore black to speak at an 18-year-old’s funeral. In the evening, I put on a pink jumpsuit to attend a birthday party. This day of opposites captures what 2023 has felt like: a year of contrasts.

In the words of my former boss and mentor, Rick Ridgeway, “There is no life without death. Spend a lot of time in Nature and you carry that truth deep in your bones.”

At the service, I read Finn’s own words from his college essay about trusting in the unknown. Seeing his friends with their arms around one another at the memorial, sobbing and laughing, broke my heart and mended it at the same time. They spoke so eloquently around three main themes: the positive ways that Finn influenced them in life, their curiosity about what happens after death, and the many ways that they will carry their friend with them, always. “I owe my greatness to Finn,” said Jack. Then Finn’s mom, Erica, spoke about his “Flow.” Finn loved his thick, luscious hair. When chemo took it all away, he rocked his bald head. He didn’t cover it up. Erica said, “That’s when I realized that Finn’s flow wasn’t his hair. It was him.” 

In the car on the way home, the radio announced that scientists discovered a second cosmic ray, as powerful as the OMG particle. Its energy is so great, and its source so mysterious, its existence is breaking physics. This made me think of Finn, of course, but also of my “certainty” that 2024 is going to be terrible. If there are still mysteries out there that challenge everything we understand to be true about physics, then maybe I don’t know everything 😉

Later that night, twenty of us sat around one family table while our friend Rodrigo, the birthday boy, served a delicious Italian feast that he had prepared for us. The guests, mostly Argentinians, broke into song every few minutes. I needed this celebration of life, and so I sang along in broken Spanish and Italian. It was a reminder, the way birdsong is a reminder, that we must keep singing even when the world feels tilted toward loss. 

Goodbye to a friend in the morning, Hello to another in the evening. 

Today, the Winter Solstice marks the shortest day of the year. Every day from now on, there is more light. I like thinking about that; it reminds me to lean toward the light. 

There are really only three four ways I know to do this: 1. Spend time in Nature 2. Make someone else’s day better 3. Write or make art 4. Develop a “Delight” radar. 

To live a life of meaning and impact, we have to be able to do two contrasting things at once: Fully face the darkness and have unflinching trust in the unknown. Or, as On Being host Krista Tippett says, “Train your gaze to see what’s terrible, but also to see what’s wonderful and beautiful.” I’ll keep trying if you will. 

Love, 

Susie

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

***