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SAFE: A Tool to Beat Fear and Get Back to Sleep

A few nights ago, I woke up at 3 a.m., convinced that the sciatic pain in my left leg meant I wouldn’t be able to walk the next day. It was not a real threat. But I couldn’t get back to sleep.

Why not get up and test my hypothesis? Well, it was freezing outside of my covers. And what if I tested it and found out I was right? That would be terrible. MUCH better to stay here, lose sleep, and spin in fear.

Wait! I have tools to deal with fear. I’ve been developing and improving them ever since my diagnosis in 2016. I gave one tool the acronym SAFE so I could remember it even when I’m half asleep. 

I want to share this tool SAFE with you in case you might be a wee bit afraid these days about your health or the safety of the planet or the safety of democracy or all three (like me).

This tool is different than other relaxation or distraction methods. It actually gets me beyond my fear by going through it. 

Our culture teaches us to avoid discomfort or distract ourselves from sadness, pain, and fear. But what if those aren’t “bad” feelings? What if we need them to connect to one another? What if understanding our own sorrow is a way to empathize with others and act with compassion? 

What if we walked toward fear with gentle skill, instead of pushing it away?

We cannot control pain and what happens to us. But we can control our suffering by using SAFE as a tool so that we can calmly go back to sleep and wake up with more energy to tackle our challenges. 

It begins with understanding the difference between pain and suffering. 

Pain is caused by circumstance. It’s the broken bone, broken home, or the broken heart. It’s the climate crisis or the political divisiveness. It’s an angry sciatic nerve. It’s also the human experience of feeling sick or lonely.

Suffering is caused by our fear-filled thoughts. It’s what we pile on top of pain with our stories about the end of the world, the end of life, or our unworthiness. It’s the voice of Fear that says, “This is bad. This will get worse. I am not doing enough to make it better. I am not enough.”

When we believe that our scared thoughts are real, we can get caught in fight, flight, or freeze mode. The danger response comes from the Amygdala, the oldest part of our brain. It cannot tell the difference between a perceived threat and a real one. It sounds the alarm anyway. And the thought that set off the alarm in the first place doesn’t respond to us wishing it away or shouting at it to leave. 

What helps is to name the voice of fear. I simply call my doomsday voice, “Fear” with a capital F. I picture her as a fancy woman in stiletto heels. She carries a red pen to cross out everything I write. Lately, I call the voice “Bo” as in “Bo-ring” because fear is universal. It is the most unoriginal thing about me. 

By naming our fear, we separate it from ourselves. “Got it, Bo. You think I won’t be able to walk tomorrow.” This simple step activates the more highly-evolved parts of our brain and we can shift into a calmer, more effective state of being.

What I’ve learned through my diagnosis and from listening to your stories of pain and resilience, is that we are not fragile. We can handle far more than we think. 

What makes us suffer is the thought that we are not safe. 

How can we let go of that thought? 

We don’t. We remember SAFE, and we practice the tool until the thought dissipates. It’s as if Fear gives up and lets go of us

There are four simple steps to this process I call SAFE. The first time, it takes 5-10 minutes. With practice, it takes less than 1 minute. The wisdom in SAFE comes from Kristen Neff’s work on Self-Compassion, Byron Katie’s “The Work”, the latest brain research, and one of the oldest Tibetan prayers. I am grateful for their guidance.

SAFE is:

Stop: Pause. Notice that you are suffering. And notice that right now, you are safe. Take a deep breath, hold it, count down from 5-4-3-2-1 then release it. Do this as many times as you need. Call your fear by name. Be gentle. Say, “Bo, I am safe. This sounds like fear, not truth.”

Ask: Question the thought. Challenge it. Is it really true? Is it guaranteed that I won’t walk tomorrow? Is it possible that I’m inflating this? What would a wise, rational friend say right now? Can I listen to that voice instead of Fear’s voice? Notice that the goal here is to engage with Fear by asking questions and coming up with alternative thoughts instead of just believing the one you’re stuck on.

Feel: Drop into your body and wiggle your toes. Find a part of your body that feels calm. Thank it. Then find another one. Thank it. Gratitude is a balm that soothes an overactive Amygdala. If your body is still in panic mode, go back to S for Stop and breathe. During the “Feel” step, the important thing is to drop out of your head and to focus on your body and the other 98% of you that is functioning beautifully and wants to sleep right now.

Empathize: Imagine someone you care about being awake at this hour, worried about leg pain, or ruining an important assignment, or their own lovability and worthiness. How would you treat them? Would you yell at them to get over it? Try treating yourself as gently as you would treat a person you care deeply about who is suffering. Then repeat this Tibetan Loving Kindness prayer for you and for as many others as you can imagine. Say: “May you be well. May you be happy. May you be at peace. May you be free from suffering.”

When you wake up, write down the scary thought or send it in a text to a friend. Something about writing it down loosens its grip on you even more. You’re not as likely to carry it around with you all day. I have a lot more to say about how writing can ease suffering. If you’re interested, let me know, and I’ll tell you more.

Look. There are plenty of reasons to feel scared right now. But the world doesn’t need us to spin in our thoughts and suffer. The world needs us to sleep and find some ease so we can tap into our powerful self and face challenges from that place. We are so much stronger than we know. 

Love,

Susie

P.S.) I am walking just fine. The sciatic nerve pain is even improving thanks to another mind-body tool I discovered. I’ll tell you more about it soon.

Photo credit: Piqsels/Storrelse

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Mini Retreat Highlights!

Here’s to the 10 brilliant, brave women who came to reset and refresh in my home this January. We found calm in the midst of chaos, uncovered what we desire, learned to say No, and wrote a letter to Fear so it can’t derail our clear vision in 2020.

My chair broke as I was explaining how to let go of things we cannot control!  #braveoverperfect

If you want to write your own letter to Fear, here’s one way to begin: Dear Fear, Thank you for trying to keep me safe. But in 2020, here is what I need to say to you…

When you’re done, put one line from that letter on a sticky note and keep it where you can see it.

Talk kindly back to Fear as often as possible and you will break through any obstacle in 2020!

Love, Susie

Let ‘Em Burn!

Have you ever noticed that we get to the end of a year and immediately race ahead to the next year, making goals and adding things to our plate? Our culture is hooked on New Year’s resolutions and improving ourselves. So we have to help each other Pause. Reflect. and Celebrate. Let’s focus on Look how far we’ve come, rather than Look how much we haven’t gotten done!  Remember: we can’t keep adding goals without letting go of things that aren’t working for us, first. 

That’s why we’ve started a new tradition among our family and friends. It’s called, Let ‘Em Burn.

On New Year’s Eve, we each write down three specific habits of mind that we want to leave behind us. Things like the fear that I’m not doing enough, the fear that everyone is getting ahead and I’m way behind, and the fear that it’s too late to change directions now. The kids write things like the fear that I’m too awkward, the fear that I don’t know what I want to do when I grow up, and the fear that Mom will make me read these out loud. (I don’t.) Then we burn the paper. The kids get their pyro fix and I get in a lot of trouble with the fire department. 

We do this because we place so many limitations on ourselves. And in my personal experience, we are capable of far more than we think. The other side of fear is freedom and joy.

The thing is, we can’t just burn fears and make them go away. What we can do when we burn them is loosen their grip on us. This works because of these three steps: 

1) Identify and name them all as “Fear” or “Chucky” or any name that works for you. It’s amazing how writing down what Fear actually says is all it takes to realize that it’s not true or even based on fact. We can then choose to listen and believe those words, or not.  

2) Talk back to Fear. Thank it for trying to protect us. It doesn’t work to yell at Fear to Go Away!  Try using a reassuring tone with genuine gratitude; it works to calm Fear down. The voice stops being so loud and frightening. It never goes away, but it’s not so bad.

3) Move forward anyway. There’s no such thing as being completely ready. Feel the Fear then choose to be brave and take one tiny step forward. Then another. Then another. We can cover a lot of treacherous ground that way. And we are better for it. Or at least a lot more interesting. 

So. Pause. Reflect. Celebrate. Then strike a match and Let “Em Burn!

There is strength in talking back to Fear. 

There is power in letting go.

And there is joy in choosing to be brave over perfect. 

Happy 2020 brave ones!

Love,

Susie

***

I’m baaack coaching and speaking again! I’d love to help you thrive and burn off the limitations holding you back in life. I’ve also crafted a 45-min keynote on how people and organizations can thrive in turbulent times. Do you know an organization or conference that needs this message? Get in touch with me.

She might be the most powerful woman in the world

Our daughter Hazel is 14 today. It is also Día de Guadalupe. I am republishing this blog about Guadalupe, and the strength of women around the world in her honor!

Hazel’s birthday falls on the same day Mexicans celebrate the Virgin Mary, whom they lovingly call La Virgen de Guadalupe. It’s an important day in Mexico; Pilgrimages, parades, and dazzling fireworks are common and abundant. Hazel has adopted it as her own holiday. Every year, we join the large, hispanic congregation in the Catholic church to dance and sing at sunrise to celebrate this powerful woman.

I wake Hazel up at four thirty. She crawls out of bed and puts on her jacket and snow boots. We walk hand in hand, in the middle of the street, through the darkness, to the church a few blocks away. When she was younger, I wrapped her in a sleeping bag and carried her. One year, I pulled her in a sled through the heavy snow.

The legend goes that Guadalupe appeared to Juan Diego in rural Mexico in 1531, at sunrise. When the bishop didn’t believe the story that this powerful woman would appear to a poor native, Diego unfolded his cloak. Rose petals scattered on the floor, revealing a clear image of la Virgen, a young woman in a mantle made of stars, surrounded by light. Ever since then, Mexicans trust that they are under the Virgin Mary’s special protection.

Hazel and I walk in silence, watching the snow sparkle under the streetlights. Everything else is dark. I lead the way past the middle school and to the top of the hill. Then as soon as we crest the hill, we hear the drumbeat, a steady boom boom boom cutting through the icy darkness. Hazel takes the lead and runs toward the dancers and music.
At the church, it feels like Hazel and I have gone through the back of a wardrobe and into a different world; one full of bright colors, lights, and the music of drums and accordions. Parking attendants do their best to find places for the steady river of Chevy pick-up trucks. Grown men parade in through the doors and kneel to pray, wearing white jackets with sequined images of Guadalupe on the back. As soon as we sit down, children and teenagers in beaded costumes dance down the center aisle, shaking the leg rattles attached to their ankles. Hazel and I try to count the number of people awake before dawn, filling the church. Five hundred people? Four hundred, at least.

Long ago, when I am pregnant with Hazel, I go into a used furniture store looking for a bed and come home with a painting. It is a very large portrait of Guadalupe wearing a blue cape covered in stars and surrounded by golden light. I buy it. I don’t know why. I am drawn to her calm beauty and the fact that she is a young woman.

At home, I hang the painting over the hallway in our apartment. As I do laundry or try to reason with Cole, our toddler, I talk to Guadalupe, “Can you give me a hand through bedtime? Or I may start drinking heavily and that would be bad for the baby.” At the time, Kurt is living two hours away, on a job that involves tracking wildlife, while I am the assistant director at a residential school in Vermont. I am alone at home, responsible for our two year old boy and the twelve teenage boys who live directly above me, in one of the five dormitories on campus.

As my due date comes and goes without any sign of having this baby, I talk to Guadalupe nightly. It is as if she is on the other end of a phone line. I beg, “What is the baby waiting for? Can you make her come out, NOW?” When a week goes by and still no sign of labor, I say, “I’m scared. What if this baby isn’t healthy? I don’t know if I can handle that.” She just listens quietly. In my world of toddlers and teenagers, it feels good to talk to an adult, even if she is a painting. At a time when I am feeling alone and unsure, Guadalupe’s mature, female energy is welcome. To me, she represents deep love and faith in the unknown.

My water breaks during a dorm meeting. I stand up to say goodnight to the boys and water pours out of me onto the floor. The boys panic. Teenage boys panicking doesn’t look like much. There is a rare moment of silence, then everyone runs away. One boy, Jake, is sweet enough to walk me down the stairs to my apartment. But he keeps muttering, “I don’t know how to deliver a baby. I don’t know how to deliver a baby.” I call Kurt. He drives two hours home through a snowstorm and we make it to the hospital just in time.
Hazel is born early in the morning on December twelfth. She comes out screaming. Minutes after she is born, I discover that it is Guadalupe Day. I watch the sunrise pink through the window and sing to this tiny baby to soothe her. I picture the rays of light reaching out from Guadalupe and surrounding Hazel with protection.

Then my dear friend Teza calls from Collingwood, Ontario. We were pregnant at the same time, but my due date was two weeks before today and hers was a week after.
Teza says, “It’s a girl!”
“I know!” I say back, confused, thinking that she is calling to congratulate me.
But she is announcing the birth of her own daughter. What are the odds of best friends having their daughters on the same day, and not just any day, but the one devoted to Guadalupe?

I want to know more about the Virgin Mary, so I read up on her while I nurse. It surprises me to learn that Muslim men and women are as devoted to her as Catholics. She is the only woman mentioned by name in the Koran. In fact, her name appears more in the Koran than in the New Testament. It’s not unusual to see young Muslim women in hijab visiting the Virgin Mary at Christian shrines, for example. Muslim and Christian, men and women alike, speak of the Virgin’s resilience and her example of love. Hazel, and Teza’s daughter, Rozlyn, are in good hands. The Virgin Mary might be the most powerful woman in the world, a true force for unity and peace.

When I received the tumor diagnosis, I prayed awkwardly to Guadalupe for help. But this is not the story of how I prayed to Guadalupe before labor, and again before my surgeries and promised that I would go to church every week if I came out alive. No, this is the story of how I am living each day as though I may die tomorrow and therefore I am no longer afraid to say I believe in Guadalupe. Before, when I talked to the painting, I was too chicken to tell anyone that I prayed to Guadalupe. I assumed my friends would smile politely, but never speak to me again.

I am not afraid anymore. Why hide it? What I’ve learned throughout these challenging months is that it is silly to hold back love. I still don’t know where I belong spiritually; I have shopped for the right church/temple/sangha/mosque for years. But I do know that I can easily, without effort or artifice, kneel before the divine presence of the Virgin Mary. She is a woman who stands for love. She is for all people, no matter their background or religion. Her compassionate gaze doesn’t suggest that one way is the only way, but instead finds room for all of our beautiful brokenness.

This morning, Hazel and I stay in the church to watch the dancing, and the offering of candlelight and flowers. We also stay for the singing. We watch the mothers next to us bring their bundles of roses to the front. They lay them at the statue of Guadalupe’s feet and show their babies the candlelight. They return to the pew. We stand together, women and girls. One woman gives me a big smile because now even I am singing! Hazel laughs, but I keep singing. It feels easier, lighter than before. I let go of fear, and make room for joy.

Love,

Susie

***

I’m baaack coaching and speaking again! I’d love to help you thrive and let go of the fear standing in your way of being powerful. I’ve also crafted a 45-min keynote on how people and organizations can let go of perfectionism and thrive in turbulent times. Do you know an organization or conference that needs this message? Get in touch with me.

How Do You Stand Back Up When You’re Down?

This week we received the heartbreaking news that our son’s best friend, Joaquin, a 16-year-old boy, is not cured of cancer. It has come back. It’s been less than a year since he finished treatments. 

The ground fell away.

Rage stirred inside me. I was angry that this disease isn’t gone from his young body. Had he not endured enough? I was also angry that the disease isn’t gone from my body. This recurrence brought up feelings about my own diagnosis and recurrence. I felt dropped into a hole. 

Mostly, I was feeling this boy’s pain of having to stand back up and face the steep climb of treatment and its exhausting, vomit-filled isolation. Once you’ve done it, you never want to do it again. 

There’s a smaller, but similar feeling, in ultramarathons.

In ultra running, the races are designed to test your mental strength as much as your physical endurance. It’s not uncommon to run up a 12,000 foot mountain pass, crest the summit, run down the other side, then you have to turn around and run back up the mountain. 

The moment when you understand that you must run back up the mountain is soul crushing. You are no longer innocent. You remember the lung-bruising climb and you just don’t want to do it again. You will do anything to avoid going back up that mountain. It’s not unusual that many drop out of the race at this point. 

One time, while racing in an ultramarathon, I insisted on lying down on a bed of rocks instead of climbing back up the mountain. I convinced myself it was a great place to spend the night. But it was only eleven o’clock in the morning. 

Just as I was about to curl up with the rocks on the wet ground, two race volunteers dressed as sunflowers jumped out from behind a tree. They handed me a chocolate chip cookie and a sports drink. They sang to me. I don’t remember what they were singing, but their songs and snacks got me to my feet. When I stood up, they cheered for me like I was a champion, not just someone who had avoided self-induced hypothermia. I walked up the trail. Gradually the walk turned into a run.

There were switchbacks that made the ascent a whole lot easier than I remembered. I finished the race. I might still be back there on that bed of rocks if it hadn’t been for those race volunteers, people who believed in me. Their kindness and cookies helped me to put one foot in front of the other. 

The feeling reminds me of something a former student at the Mountain School, Abby, wrote to me after my diagnosis.

“I have taken up Olympic weightlifting. There’s a point when you’re at the bottom of a lift, when the weight seems heaviest. It’s called “the hole.” When you’re in the hole, it seems impossible to stand up. My thought when I am in the hole is, “If I can stand up, I will be stronger for it.

To stand up out of the hole, it takes faith that you are capable of far more than you think. But at first you need others to do the work of believing in you. It takes friends.

Here’s to friends who show up with cookies and kindness, and other friends who bring soup and bread, spinach and eggs. Friends who send letters and warm shawls. Friends who show up with empty hands, best for hugging. Friends who offer a shoulder to lean on or even a baseball bat and a trash can to beat up. 

When I ask Joaquin and his family, How do you want to live now? They say something like,

We defend happiness. We race go-karts and play in the snow. We go out to dinner with loved ones. We fill each moment with fun, love, and light.

This is how they stand back up. I know of no better way to live.

You can’t do it alone. But you’ve got to stand back up. You will be stronger for it.  

Love,

Susie

image credit: Eirik Refsdal, Flickr

***
I’m baaack coaching and speaking again! I’d love to help you thrive and stand back up after setbacks in your life. I’ve also crafted a 45-min keynote on how people and organizations can thrive in turbulent times. Do you know an organization or conference that needs this message? Get in touch with me.

    

The Beauty of Sometimes

Have you ever thought about the beauty of the word sometimes

Sometimes is a great word. It’s so much more honest than always or never

I know this because black-or-white thinking is one of my not-so-super superpowers. “So & So is an asshole.” “I’m a total success.” “I’m a complete failure.”

It seems like extreme thinking is a teenager’s superpower too. Just last night, I overheard the following examples from our teenagers at home, “I totally failed that test.” “I’m always awkward around other people.” “I never know what to say.” “I’m an idiot.”

It made me wonder, Is our tendency to exaggerate making us feel sad and stuck? If we were more honest with our words, could we be happier?  

In Lori Gottlieb’s book, Maybe You Should Talk to Someone, there is a single paragraph about the word sometimes that I’ve been savoring like the last ripe berries of the season. 

Gottlieb writes, “[The word] sometimes evens us out, keeps us in the middle rather than dangling on one end of the spectrum or the other, hanging on for dear life…It helps us escape the tyranny of black-or-white thinking.”

Our brains are wired to remember the negatives more aggressively than the positives. We may feel like we are always blowing it, but the truth is we are crushing it more often than we think. So now I’m teaching the teens in our home to try it (complete with eye rolls).

“I’m awkward, sometimes.” 

“I don’t know what to say, sometimes.”

“I act like an idiot, sometimes.

I’ve been practicing as well. It works like an alarm to wake me up from catastrophic thinking. 

“I succeed sometimes.”

“I fail sometimes.”

“So & so is an asshole, sometimes.”

The little word “sometimes” that I may have judged before to be too average and dull now keeps me from falling off the cliff of extremes. There’s relief knowing it’s not always or never

It’s a simple way to build compassion in the world for ourselves and for others. “Sometimes” is also a tool to stop beating ourselves up so we can show up real. Because we want to show up whole and human, always.

Love,

Susie

***

I’m baaack coaching and speaking again! I’d love to help you thrive amidst all the unexpected changes in your life. I’ve also crafted a 45-min keynote on how people and organizations can thrive in turbulent times. Do you know an organization or conference that needs this message? Get in touch with me.

Expectations Turned Upside Down

What is the experience of having our expectations turned upside down? 

I was supposed to have major surgery on my spine. The doctor was supposed to remove a tumor balanced between two vertebrae in my neck. And I was supposed to wake up tumor free. 

But just thirty minutes into a pre-operative procedure, they discovered something no one had predicted. A tiny blood vessel (like a tributary of a river) near the tumor is one of the only blood supplies to my spine. The telltale sign of this is a hairpin turn in the bloodflow. This led to a hairpin turn in my plans. The risk of severing this blood vessel during surgery was too great to go forward with the operation. In the future, other blood vessels may take over and feed my spine, making the surgery viable again. And since the tumor is not dangerous right now, we can just watch and wait. 

So how does this change feel?

It feels bad. The tumor is still there. Plus, so much psychological, spiritual, and physical energy went into preparing for this surgery. I was fully committed to one experience, and I got another. 

It feels good. I narrowly escaped a fusion from my skull to my shoulders, and the inability to look up or down. I also get to keep the strength in my right arm. And I can trust that I have an excellent, attentive surgeon who is bold enough to back off.

But the reality is not exactly bad or good. Doing the surgery was where I was a week ago.

Watching and waiting is where I am now. We are always just where we are. 

A friend sent me a quote, “Meandering creates the path.” I want to paint it in gold on my children’s bedroom wall. 

And when my kids experience heart-breaking twists in their lives, I hope I’ll say, “Woah. That hurts. I’m with you through this change, and every change.” 

But what were my first thoughts when they told me that the surgery was postponed indefinitely? 

  • What?! This is terrible. Let me talk to someone who will tell me what I want to hear. 
  • Oh, wait. I get to live. 
  • I get to keep all this mobility and all this strength. 
  • Oh, but this sucks. It’s not what I planned.
  • I am hungry and I want baked shell pasta. 

Then I practically ripped out the IV tube and dashed out of the hospital. I didn’t feel like the woman I was even a day ago, nervous and cautious about what I ate and what I did in case it made the tumor grow. 

I felt like a rebellious teenager who wants the music louder, and her boots taller and angrier. I moved like someone who will not be contained. In preparation for the surgery, I had to face death. Now I want to face life in all its pain and all its beauty. I don’t care whether it hurts or soothes, I just wanted to feel all of it. 

We have no idea how life is going to play out. And yet we worry as if worrying helps. And we make our lives smaller, more cautious, in an effort to avoid uncertainty. But that only gets us stuck in the land of disappointment and regret when an unexpected change arises. If we want to say yes to life, we have to take this journey with all the hairpin turns and forks in the road. We have to feel it all.

It’s like that well-known essay “Welcome to Holland” by Emily Perl Kingsley, the parent of a child with Down syndrome. She describes the shift in her life this way: It’s as if you planned a fabulous vacation to Italy. You bought the guide books and learned some phrases in Italian. You dreamt of hand-made pasta and riding a gondola in Venice. But when you land, the flight attendant says, “Welcome to Holland.”

“Holland?!” you say, shocked and disappointed by the change. But, as Kingsley writes, “It’s not a horrible place. It’s just a different place…”

So Kurt and I practiced saying, “It’s just a different place” as we put away the clothes we’d no longer need, cancelled our lodging, and all of our plans. Then we did what felt right. With my brother Derek, we took our 79-year-old mother out to a rock concert. 

The future is hidden from us. We only get to see little bits of it revealed, like a flashlight that only shines so far. We make the best decisions that we can, one fork in the road at a time. And we respond to each hairpin as well as we can. We grieve what was supposed to happen. Then we stretch our imaginations and our dancing muscles. And we eat whatever we want.

Love,

Susie

***

I’m baaack coaching and speaking again! I’d love to help you thrive amidst all the unexpected changes in your life. I’ve also crafted a 45-min keynote on how people and organizations can thrive in turbulent times. Do you know an organization or conference that needs this message? Get in touch with me.

***

image credit: Olle August

Postponed Indefinitely

This is Kurt, Susie’s husband. The surgery is postponed indefinitely. This comes as a huge surprise to all of us.

Today Susie underwent a surgical procedure to do high-resolution mapping of the blood vessels in her neck. We had a similar procedure done in CO but the facilities here are much more powerful, so the surgeon wanted to repeat it here to help plan the operation. Today’s results indicated that surgery is not advisable at this time.

The two main facts supporting this are:
1) the tumor is not imminently dangerous now. Obviously we want it out, but it’s not urgent.
2) the blood vessels are actually still supplying critical blood flow around the tumor site. This was surprising to everyone and is exactly what today’s study was looking for. Over time, the body can reroute blood flow through other vessels and this is what everyone assumed had already happened. Today’s study showed that this isn’t fully the case. Therefore, there is more risk to the surgery.

Dr. Gokaslan decided to postpone the surgery because these two factors make taking the tumor now more risky than it’s worth. When we planned the surgery, we didn’t have the full picture of the risks. Now that we do, it’s a different situation, hence the different path forward.

Instead of an operation now, we will go back to close monitoring of the tumor (every 3 months). Susie may need to do this surgery in the future, but now we want to wait longer and see how things develop. We expect that over time the blood flow can reroute and reduce the risks in any future surgery Susie may need. We meet with Dr. Gokaslan tomorrow and will learn more details.

Susie was so hungry after today’s procedure (and foggy from the anesthesia) that she insisted we go straight to an Italian restaurant from the hospital. Never mind that she was in her pajamas. She joyfully ate enough for three people, and is now cozy in bed. She pivots easily, so is not too disappointed, just a little stunned.

We both feel grateful that our surgeon is bold enough to cancel a surgery when the risks are too high. And we are super thankful for your powerful, positive visualizations.

Susie’s mom, Lyn, and her brother Derek, are coming to town tomorrow anyway. We’ve decided to turn this into a celebration. We’ll likely spend a couple of days here before heading home. After we meet with Dr. Gokaslan tomorrow, we’ll share with you what we learn about what happens next.

Maybe we light the candles anyway, and visualize the tumor staying the size it is or shrinking, and therefore giving Susie a long and happy reprieve.

We cannot thank you enough. Your support has been incredible.

Love,
Dr. Kurt

Suffering is the Middle School of Life: Painful but Necessary

Doesn’t it seem like everyone has more challenges lately? Our thirteen-year-old daughter thinks so. She says she has no one to sit with at lunch. She wishes she knew exactly what to say to get the other kids to like her. And I feel her pain. I remember those days. Can’t we fast-forward middle school for her? Can’t we shortcut her suffering and get right to the learning?

There is no shortcut. Suffering is the middle school of life. We cannot go straight from elementary school innocence to high school swagger without the pain of those years in between. We have to go through middle school. We can better it, sure. But we cannot skip it all together. 

My friend, Deb Rubin, who leads fabulous mother-daughter workshops, insists that middle school is supposed to be difficult. “It’s about learning to deal with discomfort. When your child comes home complaining about not having anyone to sit with at lunch, the only thing you can do is be curious. You cannot fix it. You can show up confident that things will change. You can relax because you understand that discomfort is a necessary part of the growth process. Then you can ask questions that help her to identify and feel her feelings. How is that for you? Tell me what you are feeling. Oh ouch, how did you respond? 

We have to stop wishing discomfort away. We have to give up the false idea that others have it easier than us. Not to mention, we need to let go of the false hope that if we just knew the right way to behave, we’d have it easy too. Far better to put our challenges on the table, under a bright light, to look and feel them.

This week, our family went on a short retreat and did a small fire ceremony. We wrote down what Fear was saying to us on small slips of paper. Then we burned them. It felt great. Since then, I keep talking back to Fear, the voice in my head. I say, Thank you for your concern, but I am built for this. Life is about facing tough challenges, not running from them. We are all hard wired for resilience. We just don’t trust that truth. 

I feel all of you in my corner. I’m in your corner, too. And I can relax knowing that our daughter’s challenges are building her up, making her stronger, and helping her to discover who she is. She is built for this. We all are.

Surgery challenge accepted. I’ll return home in a month different, but better.

Love,

Susie

Upcoming Surgery: 3 Ways to Help

Remember what Dr. Liebsch said to me? “What you have is a chronic illness, like diabetes. It will never go away, but it can be controlled and managed.”

Well, it’s time to control the spot of tumor that has been on my neck since the beginning. So, here we go again…

I need another, smaller surgery. Tentative date: November 6th, in RI.

This is not an emergency. It’s just time. We’ve chosen Dr. Gokaslan, one of the leading experts in spinal tumors, to resect as much of it as possible. He works out of Rhode Island Hospital.

Kurt and I hope to go to Providence on Nov. 3rd. Surgery on Nov. 6. Recovery is one week in the hospital, then two-three weeks in the Providence/Boston area. We found places to stay! Thank you. Not sure yet if I’ll do radiation right after or wait until spring.

Kurt will be with me from about Nov. 3-14th. After that I’ll likely go stay with friends in Boston. The kids will stay home. My oldest brother Jake is coming to stay with them while we’re gone. They’re lucky to have him!

To remember:

  1. This is spinal surgery, not skull or brain. The operation is only ½ day.
  2. My spine will be fused from my skull to my shoulders afterwards. This is certain. I am sad about the loss of rotation, and grateful that Cole is able to chauffeur me around now 😉
  3. Because of where the spot is, there’s some risk to a nerve that goes down my right arm. My surgeon says it is possible, but not likely, that it will be damaged. I’ve been taking this part hard and grieving the potential loss of strength in my writing hand. But after weeks of feeling blue, I’m trying a new approach. I’m learning to dictate, and I’ve come up with a series of challenges to strengthen my non-dominant hand. Want to join me?

How to help: 

  1. On Nov. 6, picture the tumor sliding off
    the bone and nerve easily, smoothly
  2. Imagine me healthy, strong, and home by Dec. 7, in time for Kurt to play lead guitar in his rock band’s first gig (details to come), for Cole to get ready to go to the Mountain School, and for Hazel to perform in the Nutcracker, dancing in the snow scene ‘en pointe’
  3. Do the non-dominant-hand challenges with me! This week: Brush your teeth with your other hand.

As Dr. Al-Mefty (my skull surgeon) 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.” 

What makes me “good at challenges” is that I don’t feel like I’m alone. Thank you for being there with me every step of the way. We all have our own mountains to face, but I firmly believe that together, we can do anything!

Love,

Susie

#braveoverperfect #joyoverfear