I’m listening and learning to Black leaders. One gem I found recently is this:
Angela Davis(told a crowd at UPenn in 2010)
“Activists in America in the late 1960s were saying,
“Power to the People!”
while activists in France were saying,
“Power to the Imagination!”
It’s so important to use our imaginations to create the future we want for our children.
Watch this 3 min video clip from Angela Davis: How Does Change Happen?
I’m going to spend the year with Mary Oliver’s poetry. What can her words teach me about how to live? They remind me to slow down and look. Notice the hawk, but also the cold stones, and winter’s weeds. I believe attention is a form of prayer. So does Mary Oliver:
It doesn’t have to be
the blue iris, it could be
weeds in a vacant lot; just
pay attention, then patch
a few words together and don’t try
to make them elaborate, this isn’t
a contest but the doorway
into thanks…
–Mary Oliver. From “Praying” in Thirst. 2006.
My resolution for 2018 is to Pay Attention. In 2018, I will know the names of all the plants near my home and the birds who leave their tracks on my windowsill. I will learn the names of the neighbors I don’t yet know. Knowing the names of things is the difference between familiarity and intimacy. I will also pay attention to my body, not just to my thoughts, and unlock wisdom.
Love,
Susie
photo credit: Blue Iris, William Warby, Flickr
I post these entries as a form of thank you; your words have nourished me. May mine give you back some of that love. In my life, I choose expression over rumination and worry. These 30 days mark a significant time for which I am grateful: before and after the multiple surgeries to remove a skull-base tumor. These musings are intended to honor the end of that time and the beginning of a second phase: radiation therapy and many new unknowns. SV:* means Small Victory. I recorded one each day.
7.29.16 Holiday Inn, Boston, MA.
Just completed a 12-hour day of pre-operative tests. In the MRI machine, the metal coils vibrated so loudly I felt like my body was ringing inside the bells at Notre Dame Cathedral in Paris. I let it ring this question out of me:
If you come out of these surgeries unscathed, with a full life ahead of you – How are you going to live? Would you do anything differently?
7.30.16
In the past seven nights, I have slept 3-4 hours a night. I wake up because of the pounding headache at the base of my skull and then I spin in thoughts, wondering if I am going to die, or worse, be horribly debilitated. Anyway, I should be exhausted. I should be dragging my body around like a bag of potatoes, but instead I feel energized. It must be from all this support flooding in from everywhere. I feel lifted and light.
I have had a magnificent life – but I put off for too long my desire to write and make my writing public because I was afraid of these two unanswerable questions: How will I make money at writing? And: Would anyone care about what I have to say? The answers don’t matter to me anymore. I feel motivated to write now because I know I will regret it if I don’t and because I am less afraid with each wave of support.
I can’t help but think everyone needs to feel this outpouring of love. Why do we hold back? I have said I love you more in the past few weeks than I have said it all year and I have heard it said back to me so often that it feels like “I love you” is my first and “Susie” is my last name.
7.31.16
You know what you think about when the possibility of dying is this close?
LOVE: You cycle through everyone you have ever loved and still love.
You don’t think about work – but you do think about people from work.
GIVE: All the ways you still want to spread goodness in the world. I’m not kidding. The second biggest thought I have after love is give. I don’t think that’s unique. My guess is it’s human. We derive pleasure from giving.
8.1.16
Surgery day. I am up at 4am, banging on the locked doors of a church on the corner. I want to go in and light a candle. Kurt points out that it’s not a church, but an apartment building. We run to hide in the bushes in case we’ve woken someone up. We buckle over, laughing.
8.2.16
Wake up in the Intensive Care Unit after 34+ hours of surgery. I notice faces of everyone I have ever known appearing and disappearing before my eyes. I can’t talk – my throat feels like I have swallowed a truck. I can’t swallow. Is this normal?
Dr. Al-Mefty comes in and tells me Kurt has been sitting in the waiting room for 36 hours.
I want to ask if it’s over.
“It’s done,” says my doctor, reading my mind.
“Rest now.”
Wake up again and there is my former neighbor in Vermont standing over me. He is a doctor in this hospital.
“I come bearing gifts,” he says.
He hands me a gallon of maple syrup, a bag of potatoes, and a bag of garlic.
I laugh, or try to laugh, but it is way too painful to laugh. Still, I am smiling.
8.3.16 (SV*: first time standing up)
Cole is 13 today. I miss him.
I wrote him a letter before the surgeries. Here’s an excerpt: “…It feels important for me to tell you how perfect you are, as you are. From the moment you were born, you had already won our hearts. There is nothing you can do to make me love you more or love you less. You and I have been walking together since the beginning and we will keep walking together, no matter what distance separates us. Right now, you are waking up on the edge of a northern lake and I am in Boston, and I feel you as if you were sitting next to me. It’s not a connection that lives only in the physical world; it’s much wider and deeper than that, like the lake itself.”
8.4.16 (SV: moved out of ICU)
The nurses in the ICU call me the ‘Thumbs-Up Girl.’
“You ok?” Thumbs up.
“How are the pain meds?” Thumbs up.
“So they’re good then?”
I shake my head, “No.” I give the thumbs up and then push it up into the air. And up. And up. More! I am trying to say.
8.5.16 (SV: ate 2 bites of jello–first real food)
My hip hurts. I feel a scar. I point to it and play charades with my doctor to ask “Why?”
“Sorry,” says my doctor. “We had to take your Iliac Crest to put in your neck. The tumor had eroded a lot of bone back there.”
My back hurts.
“Sorry,” says my doctor. “We had to take a rib, too.”
My stomach hurts.
“Oh yeah,” says my doctor. “We needed some fat to stick the bones together. Your mother offered to be a donor. But we went with yours instead.”
8.6.16 (SV: walked a lap around the nurse’s station)
I have a roommate named Louise. She is 79 years old, recovering from back surgery. Every two hours, they wake us both up and ask the same questions:
I am a good student; I repeat the answers to myself so I am ready when the nurse comes. Louise, on the other hand, is heavily medicated and doesn’t seem to give a shit. I hear the nurse ask her through the curtain:
Where are you?
“Uh,” Louise answers. “In a lounge on a cruise ship?”
Every two hours, she gets the answers wrong. I can’t take it.
I yell out, “Louise! The answer is Boston!” The words, with my recovering voice, come out as a stage whisper.
Louise just says, “Is that you, Fred?”
8.7.16 (SV: brushed my teeth)
I am discharged from the hospital. Our friends Faith and John bring the kids from Vermont to help take me home. This is the first time they will see me after the surgery. Will they love me like this?
Hazel says, “You don’t look like my Mama.”
My heart breaks a little.
8.8.16 (SV: picked up a pen and wrote)
I’m watching Kurt sleep – his chest rise and fall – his thumbs hooked into his boxers like a little boy – He is lying on top of the covers, ready to wake up and help me at any moment. Today is his birthday; I am (one of) the lucky benefactors of his beautiful life.
For Kurt on his Birthday: a poem:
At midnight, my husband is awake,
his hands moving gently,
measuring out my medications.
At 2 am, he makes three trips up the stairs
to hand me water, then a straw that bends,
then potatoes and chicken
He mashes into Skittle-sized pieces with a spoon.
Now it’s 4 am and he is awake again,
holds my hand as we walk in the dark
because I can’t sleep.
We step under a giant cottonwood tree
and touch its braided bark.
I have been restless my whole life,
running up summits to see
what shiny beauty was on the other side,
but the beauty I see now is everywhere,
especially in the simple hand gestures of this man.
He finds a loose strand of my hair
tucks it neatly behind my head bandage,
holds my head in his hands,
and kisses me.
8.9.16 (SV: had stitches removed)
The pajamas I’m wearing were sent by a friend. This food I am eating was made by a former student. The book I’m reading? Given to me by another friend–a gift. Flowers: another gift. This house I’m standing in? Found because of a friend reaching out. I start to cry, overwhelmed with gratitude.
Watching the Olympics in Rio. I am so emotional lately that I cry when I watch the athletes sing their national anthems on the podium. Then I cry for the 4th place finishers. Then I cry during the car commercials. I think it’s the drugs.
8.10.16 (SV: first bath)
Super frustrated. Go to write and my head hurts and my right arm throbs with pain. It feels like I have an electric eel surging through me. I try to go on Facebook and yet all I see are people having summertime fun while I lie here. I read that my brother and friends are off to dance at a music concert and I can’t even stand up on my own. Read? Can’t concentrate. Walk? Too tired. I feel dumb and useless. It’s almost night again. I hate night time. While others sleep, I sit up in pain, unable to lie down without choking.
8.11.16 (SV: slept for 3 hours in a row!)
Kurt and I walked around the block at 1am, 3am, and 5am. This is our routine. It gets me out of my head and tires me out enough so I can face another 2 hours of trying to sleep sitting up, in a neck brace. Kurt calls me “The Ghost of Wellesley Hills” as I shuffle along the sidewalk in a long, flowing, white bathrobe and neck brace. We imagine the legend growing around the neighborhood.
8.12.16 (SV: first time wearing clothes)
Tonight I wanted to walk the dark bike path along the little creek instead of walking under the street lights. I heard the cicadas and breathed in the smell of ripe lily blossoms. I had to breathe through my fear of accidentally tripping on a homeless person – or stumbling and falling and breaking my new neck.
Breathing through the darkest patches of the path felt good. I felt the fear and the unknown as a physical place with insect sounds and flower smells. It helped me to experience and move through what I was feeling. It’s ok to feel scared. It’s ok to lean into the unknown.
8.13.16 (SV: first time walking without holding someone’s hand)
Grateful for Teza’s visit. She said to me when I was spinning in my head, “Remember: Gratitude is the ultimate protector.” Walking tonight around 2 blocks. I am grateful for these animal sightings:
8.14.16 (SV: first time I gave myself shots (heparin to thin blood & prevent clots)
My mom is here and so is my friend Cate while Kurt drives to Vermont to pick up the kids. My mom is protective as we walk slowly along the bike path. She doesn’t want me to turn too quickly and hurt my neck.
“A bunny!” she shouts, “But don’t look!”
8.15.16 (SV: off all pain meds)
The beginning of a new week. I’ve never been so happy to write “MONDAY” in my life. Because M = new week, fresh start, made it – and this limitless potential of healing that may take place in the days ahead. It also means my surgeon is no longer at a conference in Korea but back home – and Kurt is no longer in VT, but back beside me in bed – 2 giant absences that I was holding my breath during in case anything happened. But nothing happened. And now the kids are with us for good.
8.16.16 (SV: pulled off last bandaid)
Kurt and I just had a fight. When the car broke down this morning – I asked questions – Should we roll it and jump start it? Should we call a tow truck? Kurt said that every time I ask a question, I am handing over responsibility to him and I’m simultaneously telling him that I don’t have confidence in him. I need to speak up with my ideas in statements rather than questions.
He wants to hear me say, “You’ve got this. I know you’ve dealt with cars before – you’ll figure this out.” But it’s a communication thing; I ask questions to feel like I am brainstorming in the moment and working together. What he made clear is that in these moments what he needs is not brainstorming, but rather to feel like I know him and what he needs and have confidence in him.
So I cried. I cried and pulled away from him – thinking how can you scold me right now for something I did in a stressful moment on the way to the hospital? How can you tell me to just keep saying, “I know you’ve got this” when that means handing over one more aspect of a life that I have less and less control of every day. I need to feel empowered instead of powerless and disengaged. I engage by asking questions.
We looked at it from a few perspectives and recognized that it comes down to TRUST. If I can just trust that he has this stuff worked out and show him my trust, there will be plenty of opportunities for engagement and brainstorming and questions.
What I want to hear now is “All will be well.” And then I realize that’s exactly what Kurt needs too. He needs someone to tell him “All will be well” instead of all of us leaning on him to fix all that feels broken.
8.17.16 (SV: ate all my dinner)
When we talk about the unknown, we usually picture something dark: the edge of a cliff or a long tunnel. But unknown is also what the stars are to me, and whale song, and love and butterfly migration. It’s a hummingbird’s heartbeat or a comet’s tail, or the way a mother knows her child is in danger. It’s the building of a spider web or a bird’s nest, the way life grows from an egg. It’s northern lights and salmon journeying home.
8.18.16 (SV: first book read)
Tasha is here taking great care of me. We talk about how there is a real temptation to worry and to “face facts” – that it is somehow naive and ‘not realistic’ to focus on the positive. Doctors speak in average life spans with this disease, but averages are misleading. Does the average apply to me if I am 20 years younger and healthier than those in the study? Averages don’t tell us when they discovered the disease or how it was treated. Kurt and I made a deliberate decision not to talk about the kind of tumor it was with others and not to attach ourselves to a name or diagnosis. We wanted to focus on my particular experience and I needed my family and friends and relatives to focus on a positive outcome. This wasn’t blind faith – it was a powerful belief in positive thinking to impact our relationship to the unknown and in so doing, affect the outcome.
8.19.16 (SV: first haircut)
I remember walking in the woods in a forest in Nova Scotia with an arborist at a time when I was getting my Masters in Environmental Science. I thought that I understood how to age a tree – not just by the rings of a tree when cut, but by its size and girth. When we walked under one maple, he asked – how old do you think this tree is?
“60 years,” I said confidently.
“No – it’s only 30. I planted it,” he said. “It’s grown this tall and strong and behaves like a much more mature tree because it’s so healthy.”
That stuck with me – the idea that trees are individuals, not merely species with averages. One maple may grow at a very different rate than another, even in the same soil.
I’m determined to stand out as an individual, strong, and full of life – robust – gorgeous – not riddled and broken by disease or limited by averages.
8.20.16 (SV: first steps on a beach)
I passed a woman in a Middlebury sweatshirt – the college I went to – she was running along the path where I was walking. And I thought about Middlebury – about the days when I ran x-country and track and skied and ended up on the wall of fame in the Athletic Field House. And I thought about how now I am a walker. And I felt tremendously small and slow and sad.
I also realized that as I walked, I was seeing shades of green I’d never noticed before in the leaves of the butternut and ash. And I liked seeing those colors. I suddenly didn’t mind walking instead of running. I liked moving at this pace in the world. I’ll take this new existence over no existence at all. There is joy here too.
8.21.16 (SV: first restaurant outing)
Ok. So, I can handle the unknown if there are a limited number of variables. The first time around, there was no choice about the surgeries. They were necessary. Now that we are out of the emergency phase, there is ambiguity and it’s making me uneasy. I need a boost in courage and positivity. The possibility that I might need more surgery plus two months of radiation makes me feel like I just rounded the last turn of an ultramarathon when the officials decide to move the finish 26 miles further, uphill. I have to remember that I am strong and that surgery and radiation are key to our goal: to stop the tumor in its tracks and zap its energy and ability to grow. I want this tumor to lie down and never get back up. But does it have to be so darn uncomfortable?
8.22.16 (SV: first shower)
I am awake, ruminating. What comes to me tonight is TRUST. There will be unforeseen obstacles – plenty of them – to come – with or without this menacing diagnosis. There is no other way to face them than one at a time with calm responsiveness the way Kurt has shown me how to do forever, particularly in the past few weeks. No use worrying in advance. We will get through with calm responsiveness. My friend Alden taught me to recite the Wendell Berry poem, “The Peace of Wild Things” until I fall back asleep:
When despair grows in me
and I wake in the night at the least sound
in fear of what my life and my children’s lives may be,
I go and lie down where the wood drake
rests in his beauty on the water, and the great heron feeds.
I come into the peace of wild things
who do not tax their lives with forethought
of grief. I come into the presence of still water.
And I feel above me the day-blind stars
waiting for their light. For a time
I rest in the grace of the world, and am free.
8.23.16 (SV: first time taking off neck brace for 1 hour)
Hazel’s Song (sung from the back of the car while I am in the front–we are all headed out to see a movie.)
| Mama’s scars are Gro-o-o-o-dy
But I don’t want To say anything mean So I’ll just turn My head, close my Eyes, and hope I don’t See them… |
We all burst into laughter. Oh, Hazel, thank you for expressing how you feel. It’s honest, and it helps!
8.23.16 (SV: first movie)
Kurt and I took the kids to see the movie, “Pete’s Dragon.” It wasn’t great, but it wasn’t terrible either. For two hours, I allowed myself to feel like I was running through the woods like the little boy hero of the movie. When the lights came up and I realized that I couldn’t run, that I could barely walk, I crumbled in tears. It wasn’t a dream, I really was “compromised” and was going to be limited for a long, long time. Kurt saw me crying and he understood; he started to cry too. When a couple walked by and gave us a look of concern, I heard Kurt say, “Emotional movie, wasn’t it?”
8.24.16 (SV: first time sleeping lying down)
What’s toughest for me is trying to figure out how to be me – only different – how to play with our children when they want to wrestle and be tickled and go places and do things that I can’t do.
They say anger is the 2nd stage of grief. But I have been thinking “Anger is not my issue.” Until tonight. Tonight I started to cry. I felt so angry that I had to go through this pain and that my family had to help me put on my socks and feed me – so I exhaled all that pain – found myself groaning or gritting my teeth and then opening my mouth and sticking out my tongue and growling, growing out all my anger and frustration – that felt like blocked sadness – sadness that Hazel didn’t want to come near me – I heard the words she said echoing inside, “You don’t look like my Mama” I felt anger that she was repulsed by me and that even if she wanted, I couldn’t hold her tight in any way that didn’t hurt.
It all came out – instead of feeling “it’s fine, it’s fine” – I just sat and cried and growled and groaned.
Then I stood up and walked outside into the storm and felt as light as the flashes on the horizon and almost as fierce.
8.25.16 (SV: first flight)
We flew home today! Flight was not that painful. In fact, Kurt and I laughed a lot, cracking jokes about my new stiff neck. Humor helps. When the flight attendant kept complimenting Kurt on his choice of reading material, “Modern Calculus,” I rolled my eyes. Kurt said, “Oh yeah, well I could make out with her right now and stiff-neck you wouldn’t even notice.” Ha!
8.26.16 (SV: first day alone-Kurt back at work)
Hazel lost a tooth today. How great is that? Just when she seems so grown-up, she hands me a tiny chiclet of a tooth and smiles a goofy grin. Meanwhile, Kurt went out with friends for Happy Hour. When he came home, I asked him to help the tooth fairy out by putting a gold $1 coin under Hazel’s pillow. He goes to their room, comes back, and says, “I can’t find the tooth and there’s already a gold coin under her pillow.” I stare at him. “How much did you drink?!” I tease. “Go back and look again.” Kurt walks back to the kids’ room. He is gone a long time. “No tooth,” he reports. Then he says, “Are you messing with me? Because now I am really starting to believe in the tooth fairy.” In the morning, Hazel comes skipping out of the room, “The tooth fairy brought me TWO golden coins!” and Cole slyly hands me her tooth.
“Wait. Did you…?” I ask, suddenly understanding that he is the one who is grown up. He comes over to my side of the bed and whispers, “I knew you couldn’t bend over, and the vending machine at school gives out gold coins, so I just helped a little.” I gave him a big hug. “You know what the best part is? Your father now believes in the tooth fairy!”
8.27.16 (SV: could move neck enough to look down at keyboard & type!)
My schedule! Goal: to heal and get back to pre-op weight
6-7: smoothie #1 + walk 1-2 miles
7-8: make daily supply of smoothies, get kids off to school
8-9: smoothie #2 + nap #1
9-10: meds (blood thinner for clots) + writing
10-11: smoothie #3 + writing
11-12: emails, calls, appointments
12-1: lunch & walk #2: host visitors
1-2: more calls/doctor appointments
2-2:45: smoothie #4 + meds + nap #2
2:45: pick-up Hazel
3-4: snack + read with Hazel
4-5: smoothie #5/ kids to activities/ research healing
5-6: dinner prep/visitors
6-7: dinner
7-8: nap #3 or walk # 3
8-9: smoothie #6 + rally towards bed/ read to kids
9: meds + meditation + bedtime
8.28.16 (Welcome Home party)
I have been inspired to keep a list: Can I write down 1,000 things that make me feel grateful like Ann Voskamp, the author, suggests? There is power in paying attention and there is power in writing down what we notice. I begin:
8.29.16 (One month of keeping this journal)
Before the surgery I had to fight the thought pattern that even though everyone kept saying “You’ve got this” – I didn’t feel like I had anything – I felt, pretty strongly and clearly, that this might be it. I also felt like no one was really listening to how much neurological damage there would likely be. So it was tough to accept others’ positivity and believe in it. What helped then and what is helping now is to remember that our fear and the thoughts that go along with fear are just responses to the unknown but they are not predictions of what could happen. So, there are plenty of people who have survived something like this and lived a long, long time after- and there is no reason why I can’t be one of them.
One month ago, I asked…If you come out of these surgeries unscathed, with a full life ahead of you – How are you going to live? Would you do anything differently?
I already am. I slow down and pay attention. I worry less and choose to thrive instead. I will spread bravery, joy, compassion, and profound confidence with energy and light.
xoxox
Susie
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I have been having a tough time trusting in the unknown. A vacation broke me of that fear. This is the story of how our recent trip to Mexico had no plan. Normally, Kurt and I work full time and the only difference between summer and not summer is the kids are not awake before we go to work.
This year was different. It felt important to do something together as a family to mark nine months since our lives were turned upside down by this brain-stem tumor. And since I felt that the secret of healing was letting go of control, we intentionally created a vacation that left plenty of room for the unknown.
We flew to Cabo San Lucas, Mexico on points with Southwest. When we stepped off the plane, we had no idea where we would sleep that night. We knew we wanted to camp in the two 2-person tents we brought with us, but where? Was it safe? What would we eat? Would I be able to sleep flat on the ground?
We had a map. We had a few scribbled tips from friends on a notepad. We rented a mini-van from a super-enthusiastic young woman at the airport. We had sleeping bags and I had an inflatable pillow that I clung to like a security blanket. We had a phone with a Mexico data plan. The kids had no screens. They entertained themselves on the long drives by blowing into empty glass Coke bottles.
Twenty years ago, before cell phones and Google, Kurt and his friend Scott kayaked the entire length of Baja, on the Sea of Cortez side. It was a two-month journey steeped in trust and the slow pace of a hand-powered boat. They moved through a curious new landscape with Cardón cactus as tall as NBA stars, jagged mountains sliding into the water, Frigate birds with a wingspan of seven feet, and flying fish slapping them in the face. When they were too tired to paddle any further, they pulled their kayaks ashore and ate whatever the locals had to offer. That was the last time Kurt had been here.
Things had changed a little since 1997; the roads around the southern tip of Baja were crowded with cars and construction. There were condominiums and conference centers where there were only cactus and quail before. This time, Kurt also had a wife (that’s me ?) and two kids, aged 11 and 13, none of whom knew anything about where we were.
We opened the map, and aimed for areas off the beaten path: sheltered bays on the east coast, out of the wind and away from other spring break tourists. The first night, we didn’t have enough daylight to make it to the coast, so we looked for a place to sleep inland. We had heard there was a waterfall nearby. But we didn’t know where.
When we had been driving on a dirt road with no road signs for an hour, I imagined us stranded in the desert, so I pestered Kurt with questions.
“Do the cactus hold water in their trunks?”
“Not really,” said my biologist husband. “You have to pummel their pulp for a long time and chew on it, spines and all, to get any water.”
I looked out the window at endless dry desert and thought about how crazy it was to deliberately bring my family into the unknowns of this risky landscape.
Just as I was about to ask Kurt to turn around, we made it to the end of the road. A tall, local man in a cowboy hat and handlebar mustache stood there like a mirage, and greeted us warmly in Spanish.
“I am Prisciliano Elehazar de la Pena Ruiz. Would your family like to rest? I have cabins you can rent near the waterfall.” I almost kissed him.
Pretty much the whole trip went like that. We pointed to a place on the map and always seemed to find remarkable, empty beaches, and generous locals at the end of the road. One day our son said, “I know we’re getting close to something good when the minivan door squeaks like crazy.” What he meant was, when we left the paved road for the dirt, the bumps in the road shook the whole van. I thanked my little inflatable pillow and always found a way to sit in the car comfortably, without rattling my neck or head. We didn’t know what we would find at the end of the dirt road, but after several teeth-chattering kilometers, we’d arrive somewhere spectacular: white sand, green water, gorgeous seashells, mangrove trees and ibis birds, plus islands to snorkel around, all to ourselves.
One night we slept on a beach in a town with a sign that said “Población: 41.” But we only counted seven people. Later we found about thirty donkeys wandering around our tents.
Another time, we heard of some hot springs up the next canyon, but the beach “road” to arrive there vanished at high tide. Kurt taught the kids how to spearfish and they hunted for our dinner, while I chatted up the locals to find out where I could buy fish. Let’s just say I liked to have a solid back-up plan. Every night, we ate Barred Snapper and Triggerfish tacos, either caught or bought, and cooked on our Whisperlight stove, powered by gasoline fuel.
Then we’d wash our fish bones back into the ocean and look at the stars. Before this trip, the kids knew two constellations: the Big Dipper and Orion. We brought with us a classic book from 1952, The Stars, by H.A. & Margret Rey, the authors of the Curious George series. The Reys use simple, stick-figure illustrations to connect the stars into the classic Greek characters. Their brilliant mix of art and science gave our kids the tools and curiosity they needed to find over thirty constellations and the permission to make up their own. They were so engaged in their surroundings. Cole had me set an alarm for midnight so he could try to see Scorpio and the Southern Cross, Hazel had fun inventing a giant three-tentacled octopus constellation.
Meanwhile, I slept like a baby. At night, I’d lie there grateful that I could lie flat, headache-free, and take in this beautiful world of stars and sea and family. I didn’t know where we would be the next night, but it mattered less and less. Trusting in the unknown was becoming easier for me. Nine months have passed since I first found out about my brain-stem tumor. I guess I had to slowly birth the discovery that there is a plan, there always has been, it’s just not mine.
Join the discussion: Share (in the comments, below) your stories of times when you let go of control and found something better in the unknown.
When I was younger, I wanted a mother who was sweet and nurturing, who baked cookies, and who welcomed my friends with cheerful holiday decorations. What I got was a mother who raised us well, but without softness, and who baked so rarely that she kept a heavy chair in front of our oven door. On Halloween, she turned off the lights and left a bowl of toothbrushes on the front step. At Christmas, she hung a tangled strand of lights on a house plant and called it a day.
My favorite picture book was “Are You My Mother?” It’s about a bird who falls out of the nest and goes looking for its mother, asking the cow, the hen, even a bulldozer if they are her mother. Growing up, the book was an inside joke between my mom and me, because I always felt so different from her, and she knew it. I was a little hippie girl and she was more like a Spice Girl. I lay on the floor and listened to Bob Dylan while she moonwalked to Michael Jackson. She was messy and I organized everything. She seemed to be care free. I worried constantly. She had clear boundaries, I ran ragged trying to keep everyone happy. When I read that the legendary folk singer, Joni Mitchell, had given up a daughter about my age for adoption, I fantasized that she was my real mother. I imagined the warm embrace when we finally met, and the cover story in the newspaper. There would be a picture; Joni with her guitar, Susie with her ukulele, and we’d be sitting under a tree, smiling. The headline, “Mother and Child Reunion.” Basically, I just wanted my mother to be different than she was. Doesn’t everybody?
Now that I am a wife and a mother myself, I appreciate that my mother was never conventional and always 100% herself. One of my mom’s best friend’s described her as, “often wrong, never in doubt.” And my mom laughed. That is the thing about my mother: she can laugh at herself easily, joyfully. Just last week we were trying to carry a suitcase down a flight of stairs and when we realized that we only had 1 good arm and 3 good legs between us, she started to laugh, and then I laughed, until the two of us were laughing so hard that I peed—just a little—right there on Boston’s South Station steps.
The first time she came to see me post-surgery in Boston, I wanted her to help me prepare meals, do laundry, clean up. When she arrived, she set down her hot pink bag and declared, “I don’t cook. I don’t do dishes. Never have. Never will.” Instead, she made me swallow monster gummy multivitamins, get my hair styled, and do exercises that she had seen the Olympic rugby teams do on TV. I was frustrated; I kept wanting her to be better at this nurse stuff, and know exactly what to say and do. I wanted her to be different.
It was the same as when I was a teenager in the house. While I raged at her shouting, “Why can’t you be more like other moms?” I missed what she was demonstrating to me every single day: how to be authentic and real. Be yourself! Her actions screamed. And I missed and missed and missed the memo. When my parents divorced, I was just a baby. I never knew what it was like to have two parents under one roof. Somehow, I blamed my mother for the divorce. If she had only been a little more like the other moms, I reasoned, he would still be around. I vowed to be different when I grew up. And by different, I meant the same as others. I reasoned that if I acted a little less myself and more like other women, my prince wouldn’t leave. But the consequence was that I gave up my uniqueness in order to fit in and not rock the boat. Even when I realized that I was holding my mom to impossible standards, I didn’t realize it enough to stop holding myself to those same impossible standards. I worked to maintain my status as the good daughter, the good wife, the good spouse, the good mother. I managed others’ needs and feelings to the detriment of my own to the point where when my husband asked me what I needed one day, I had nothing to say. I had no idea.
When my mom came to visit me last week during my radiation treatments, we had wonderful days together. This time, instead of just wishing she were different, I spoke up and asked her directly for what I needed. She listened and responded. When I wanted privacy, she took my phone and guarded my door. When I wanted to go for a walk, she strapped on her squeaky running shoes and led the way. When I was hungry for breakfast, but too tired to get out of bed, she made me porridge. And this time, she only destroyed my host’s stovetop once. All week, I was relaxed and able to appreciate my mother for who she is, bold and brave. I was also able to appreciate myself for who I am, curious and courageous. We are more similar than I thought. This helped me to finally accept that Joni Mitchell is taken; the tabloids say she is reunited with her daughter in a California suburb. That’s OK. I hate suburbs. Plus, I think I am the lucky one. My mom may never be a great nurse or maid, but she can lift me out of my negative cycle of thoughts with her undying sense of adventure. And she can always make me laugh.
Love,
Susie
*****
Negative thought cycles have you trapped? Join Group Coaching next month. Each theme is aimed at helping you live your most joyful, intelligent, productive, and stress-free life. We’re kicking off in August and September with Joyful Productivity. Learn more or enroll now here.
Recently, I woke up full of rage and I had no idea what to do with it. I angry-cleaned the coffee grounds out of the sink. (Angry-cleaning. Verb. To make loud, banging noises and grumble bad words under your breath while scrubbing or vacuuming or generally tidying up.) I yelled at our son to get out of the bathroom so I could get in. Then I sulked around my husband because he didn’t understand a point I was trying to make. I felt lonely in the room with his rational mind and his sharp, straight sentences. I wanted him to immediately understand my non-linear thoughts and the emotional colors that fly out of me. I scolded our daughter for using my iPad. All of this before 9 am.
I poured myself a super strong cup of tea and, like a good girl, took my morning vitamins, and went down to the guest room to write. My throat burned. Since the surgeries, my throat often hurts because the tumor damaged the nerves around my vocal chords and along my tongue. But this feeling was different; I was afraid of what words might come out if I opened my mouth again. I had no idea what to do with these powerful emotions. So I hid downstairs and wrote in my journal. My hand shook, but I could not stop scribbling angry words on the page. This is what I wrote:
Sometimes there is a rage inside me that is not merely mine, but ours. Rage for the damage done to my throat and how hard I have to work to be heard. Rage for generations of voiceless and silenced people. Rage for living in fear of what my future holds. Rage for those who live in fear just for attending school. Rage for the privilege that I was born into. Rage for the poverty that too many are born into. Rage for the feeling of helplessness. Rage that I am not angrier, not doing more.
The fire behind my throat felt hotter and I couldn’t ignore it anymore. I needed water. I stood up to get a glass, but my legs buckled under me. Then, next to the laundry, I threw up into our trash can. The vomit was green from all those multivitamins and tea. I had no other symptoms, no fever, no stomachache. After throwing up, I felt better. In fact, I never felt sick after that one, strange moment. There was nothing wrong with me, except that I took some strong pills on an empty stomach. But was it a coincidence that I threw up after feeling all that rage?
I don’t think so. I have spent my whole life being a good girl, doing what I needed to do to belong and to be successful. It’s no wonder that I have no idea what to do with the anger that consumes me sometimes. I stared into the trash can and thought with the clearest mind I’d had all day; if I don’t figure out what to do with all this rage, I will throw up all over the people closest to me.
In this case, it happened to be our ten year old daughter. I turned on her even after I had the epiphany that I was figuratively retching on the people I loved the most. When dinner was over, she skipped over to me, clutching her newly-created birthday list, dancing with excitement. I was immediately frustrated because she was holding my iPad. Apparently, she had been online, creating a long list of things she wanted for her birthday. I looked at the list. I knew that she had never heard of these toys before, but because they were big and shiny on the screen, she wanted them all. My reaction? I lectured her on consumerism and marketing. My words might have been green vomit, they were so gross. The impact of my throwing up all over her with my misplaced rage was that she crumbled. She lay on the couch crying that she was a bad person. She twisted and sobbed in an anxious, depressed state. I was now raging at myself for being a bad mom.
Finally, I walked into my room and sat down in the corner, on a pile of pillows. I lit a single white candle. I thought again: If I don’t figure out a way to process and express the rage I feel, I am going to burn others up and burn myself out instead of igniting a lasting flame. I pushed play on a guided meditation. I closed my eyes and listened to the recorded voice:
Center yourself. Let go of your day. Now, what is the vision of the future that you can imagine? What is the story that you want to live?
Instead of whipping around the house, spreading anxiety and anger with my lectures and tirades, I needed to ground myself. It helped to imagine a bright future that has us working together to create change. I don’t know what I’ll do with my powerful emotions, but I will figure it out. Whatever the answer is for me, it’s got to include quiet moments like this. They may feel passive, but taking care of myself and processing what I feel might be the most radical thing I can do.
When I opened my eyes, our daughter was sitting right next to me, inhaling and exhaling calmly.
Love,
Susie
“You know what I think when I see a muslim man in the airport?” my husband Kurt asked me as we waited in the security line at the Phoenix airport. “What?” I looked around nervously, wondering where this might be going.
“Neurosurgeon,” Kurt said, and smiled.
Kurt and I have spent the last two weeks in airports and in doctors offices across the country. When I first received my diagnosis of a skull-base tumor, I called the only neurosurgeon I knew, Dr. Moustapha Abou-Samra, in California. He is an immigrant, the father of two of my former students, and a man I hadn’t spoken with in over 20 years. He was on vacation and yet he returned my call immediately. He took the time to walk us through the difficult journey ahead.
Three days ago we were in Boston because the leading world expert on skull-base tumors, Dr. Ossama Al-Mefty, an immigrant from Syria, had seen my MRI scans. He personally spent two hours with us during his dinner time, just to help us understand my diagnosis. Today we were in Phoenix, sitting for five hours in a packed waiting room at the Barrow Neurological Institute. The surgeon, Dr. Spetzler, an immigrant from Germany, had made an extra effort to see me; I would be one of 108 patients his team of surgeons would meet that day.
In the waiting room in Phoenix, there were large screen TVs on every wall, broadcasting the Republican National Convention and its theme, “Make America Safe Again.” The waiting room was quiet and tense. There was an older couple next to me. The man wore a US VET ball cap. He told me he was there for a check-up after a near-fatal aneurism. Dr. Spetzler had saved his life. It was hard to hear him when he spoke because the convention goers on the TVs were so ravenously enthusiastic about their candidate that the room seemed to erupt into Bieber-Fever shrieking every few minutes.
“We need a total and complete shutdown of muslims entering the United States,” Donald Trump has declared, and as I watched the convention, the speakers who seemed to get the loudest shrieks of approval were the ones who talked about the need to strengthen our borders. Our country’s problems are clearly the fault of those nasty, no-good immigrants.
Are these the same immigrants that are known for their expertise in solving complex neurosurgical problems? The ones who spend every waking minute dedicated to saving the lives of Americans?
We chose our surgeon, Dr. Ossama Al-Mefty, because of his unparalleled skill and experience, not to mention his complete devotion to caring for his patients, regardless of their background or religion. But hey, shut those borders down! We don’t need any more smart, dedicated people in this country.
*****
I come from a long line of strong women. My mother’s mother taught me how to hold a shovel, my father’s mother taught me how to hold a cigarette. People called me tough, independent, and smart. It was a great childhood, and for that I am truly grateful, but I was ultimately clueless when it came to making big decisions about relationships, love, work, and spirit. No one taught me how to be curious about my emotions (Why bother?) or how to take care of myself (Don’t be so selfish!). There were certain kinds of brave that I was good at: I could run up mountains and dive head first into giant waves. But there were other kinds of brave I needed to develop: how to stay true to myself in a crowd, how to face conflict, and how to keep trying when it doesn’t turn out perfectly.
The opposite of joy is not sadness, but perfectionism. When I am straining to do all parts of my life well with the hope that I will rise above confusion and criticism, that’s what I call perfectionism. The world doesn’t need us to be perfect, it just needs us to find the courage to contribute to the common good.
These strong women raised me to believe that I could be anything I wanted to be. But the way I internalized that message was that I must be great. And there were many times that I didn’t feel capable of being great and so I gave up. All I ever saw were the outer, perfect performances of women in my life: my mother, in a graduation gown, receiving her second advanced degree, and her friends’ immaculate homes and flawless appearances. I never heard about their inner conflict, so that when I encountered doubt or my own imperfections as the leader of a school, as the director of a company, and as a mother, I thought that the confusion I experienced was uniquely mine. I assumed everyone else knew exactly what she or he was doing.
You may feel that way sometimes, like you are not good enough, or brave enough, or that there is something wrong with you because you can’t keep up with the world’s expectations. There is nothing wrong with you. Just ask people of all ages for their stories. Then listen to the constellations of suffering and beauty that make up who we are.
In teaching adolescents for over twenty years, I have had the privilege of listening to their biggest questions and concerns. Here’s how one girl I shall call Annie sums up her experience moving through the maze of defining herself. “We are like glass lanterns. There is a bottom: we are lesser than—and there is this top: we better be perfect—and then there is this hollow middle with an elusive wick, waiting for us to strike the match.” Maybe you too were conditioned to be good at striving for the top, reaching for external goals and illusory perfection, but does it leave you feeling anxious and hollow?
As a teacher, I heard this question a lot: “Is this right?” “Is this answer on the test right?” “Am I doing this essay right?” I understood my students’ desire; I had spent plenty of late nights in school erasing what I had written and starting over in order to get it right. But now the challenge is: How do we cultivate enough courage to truly banish the idea that we have to get it right before we begin?
The urgency to take on this challenge hit me one day, far away from home. I was traveling with students in Nepal on a cultural exchange. At 12,000 feet above sea level, we made our way along a narrow path that wound through cultivated gardens and modest homes. We came around a corner and there was a young mother with three of her children walking towards us, carrying large bundles of firewood on their backs. When we met in the path, Jackie, the student in front of our small group, put her palms together and bowed low to the woman to greet her. “Is this right?” She called out to me, at the back of the line, while the young mother bowed back at her. Jackie never saw the woman’s wide, affirming smile, because she was looking back at me, seeking approval. She also never saw the children rushing to embrace her.
It’s not Jackie’s fault. She was used to a system that rewarded her for playing by the rules. It made sense that she was trying to make a good impression, but the moment made me wonder, “What are we missing in our effort to get it right all the time?” Real connection. Abundant joy. Balance. Creativity. Plus the chance to play more, to tinker and try things, to roll up our sleeves and be apart of the teams that are innovating to solve big problems with no single, right answer.
The world cannot wait while we sit alone at our desks, erasing and starting over, trying to get it perfect. The world needs us to iterate and to expand the limits of what is possible if we want to make change. The only thing getting in the way is that we get stuck trying to find the single, right way. We don’t know who we are and what we want sometimes, and how to move forward. The more clear and grounded we can get about ourselves, the more impact we can make. But we have to be willing to do the work of discovering who we are.
Here’s where I want to take your hand in mine and say, “Let’s go find a different way together.” Let’s practice being brave over perfect on a daily basis until we strike the match and follow the light, full of joy.
***
