Mason Reid: One Year Later

Mason Pierce Reid
May 21, 1997 – January 16, 2021

It’s been one year without Mason Pierce Reid. As Mason would say this is “stupendously awful” for those of us he left behind, and he’d probably have a song to sing because he loved to finish a sentence with a lyric, something unexpected, like “Don’t stop believin’ hold onto that feelin’…”

Mason laughed a lot. There is a collection of Stephen Colbert’s Late Show on the DVR because we haven’t been able to watch it since January 16, 2021. But we can’t delete the recordings either. Meeting Stephen was Mason’s wish from Make a Wish. His first choice was to throw a shoe at George W. Bush (because that was a thing in Iraq War years.) He chose his favorite political comedian instead. And we all laughed together. 

Mason didn’t have patience for politicians or anyone else who disregarded the value of his fellow human beings. Probably because he knew how fragile we ultimately are, how tender our brains and bodies. He knew what it was like to live with ache, threat and for no deserving reason have one’s life transplanted onto unstable ground.

He was diagnosed with a brain tumor when he was 10. He would want you to know he had chemo, radiation and 14 surgeries between then until he turned 23 in hospice. He once said, “I don’t need tattoos. If I’m not tough, how did I get so many scars?”  There were many that marked the constellation of his short, sacred life. 

He was an artist who drew his way back from a near fatal brain hemorrhage in 2010, filling one blank notebook after another with fine-lined, geometric drawings. His paintings were featured in several shows. Mason attended Fusion Academy in San Rafael, and three proms. He also attended College of Marin. He was a lifelong member of the Sunday School at St Andrew Presbyterian Church in Marin City, and a volunteer at the Southern Marin Food Pantry. He most  loved his time at UCLA. We will never forget pulling up in front of Mason’s apartment to find him waving - six feet, two inches of baby blue and yellow, hat to socks.

Mason loved to walk around our neighborhood. He greeted everyone, genuinely happy to come upon them. He looked at people the way God might, seeing essential goodness and always offering a kind word. Most remarkable were his friendships and how he touched other people. He had a wide open heart. In what would be his last years, he created at Cedar’s Fine Art Studios where he enjoyed his time among other artists, thrilled to sell his work and achieve status as a working artist.

People often write of “losing the battle with cancer,” but Mason didn’t lose. He died of cancer AND he won at life, no matter the odds, despite how hard it was every day. Right before he left us, I asked him to tell me something, anything, he wanted me to know.  He hummed, “Love, love, love, love” as in “all you need is love.”

Today in memory of Mason Reid - find a reason to laugh with someone else, play your favorite song (extra loud) and dance. 

My interview with Mothering Magazine: Living With Uncertainty: One Mother's Story

Back by popular demand (and just when we need it most), Anne Lamott and I will be talking about what we’ve learned in Covid College and how we manage to get through when what’s happening can’t be happening. Tune in LIVE on Anne Lamott's Facebook Page at noon PT on October 29—Sign up here.

In this interview with Mothering Magazine, one of my favorites, I talk about strategies for getting through prolonged extreme uncertainty without losing my faith in humanity and the power of good. There’s an alchemy that transforms painful experiences when we can help others. This is the gold wrought in knowing we’re not alone in our tender places and fears.

LIVING WITH UNCERTAINTY: ONE MOTHER’S STORY
by Sheri Vettel 

Without question, it’s an uncertain time for many of us. For those of us with children, the unknowns extend far beyond ourselves, and there are so many questions. Will my children physically attend school next semester? Am I making the best choices for my children? What if my child gets sick? If only there was a magical way to bypass the discomfort or take a sneak peek into the future and plan accordingly. Or so I thought.

“The point of not dying might be to feel these things, to have this human experience, including the infuriating part about being on a ‘need to know’ basis with the Universe.”

Over the past few weeks I’ve hardly been able to put down The Opposite of Certainty: Fear, Faith, and Life in Between, a beautiful (and–at times–humorous!) memoir written by Janine Urbaniak Reid. Janine recounts the details of caring for her son, who was diagnosed with a brain tumor at age 10, while trying to navigate a place of emotional uncertainty. While I can’t personally relate to the experience she shares in her story, I can absolutely relate to feelings of uncertainty in recent times.  Her vulnerability and courage inspired me, and I had the chance to ask her advice about handling challenging times too.

Then and now

To prevent her children from being hurt, scared, or scarred, Janine shares that, once upon a time, she sought to be the “perfect” mother. She felt a protective instinct so strong, she was certain that if a mountain lion entered her yard, it would run in the other direction. That is, until her son was diagnosed with a brain tumor. Janine immediately assumed guilt. Looking back, she’s realized that she was never empowered to remove all risk and pain from her children’s lives, and that her real strength was caring for her loved ones through the messiness of life. Janine says that “Parenting with a full and open heart is hero’s work, especially when you’re being asked to push beyond your own limits, as a human in an exhausted body. If I’m not distracted trying to control what was never mine to control, I’m apt to notice the good that can appear in the scariest of times.”

If you’re at all feeling uncertain about anything these days, I hope that you’ll find comfort in Janine’s story and words.

Q. Do you believe there are there any silver linings, or moments of hope, that come from the times when we are most challenged? 

A. Mason once told me, “I really believe that we wouldn’t be the family we are if I hadn’t had this cancer. We get to spend a lot of time together. That’s remarkably special.” He paused, “Don’t get me wrong, I’d much rather have not gotten cancer.” His sense of humor has been untouched by the brain tumor. I want to say his capacity to love has also been untouched, but I wonder if it’s possible that the tumor crisis made more room for love in all of us. Crisis tends to strip away what isn’t important. It brings into focus what is, and that’s each other.  We live in a world where the point seems to be achievement, which means securing the education that will get us the financial security that will ultimately make us safe and, therefore, happy. But will it really? Goals are important, life changing, and life preserving. The work we do enables us to make a positive impact and feed our families. But jobs change, career paths divert, and the maps we lovingly sketch for our kids’ lives morph unrecognizably. Ultimately, outside achievements can’t fill an inside void. Tough times reveal the weak places in what we think we know for sure, forcing us to let go of what we’re sure we can’t live without. This is a painful process, but what’s left is real.

Q. During really difficult times, faith can seem like a nearly impossible concept. What is no-matter-what-faith? Is it truly attainable? What kept you going in the really rough moments?

A. No-matter-what faith is a belief in the power of good that isn’t conditioned on things going the way I think they should. I call it God, but it goes by many names. When Mason was first diagnosed, my faith felt inadequate. I was sure that someone with a better God wouldn’t feel like I did. She’d be sure of a lot more, and probably have a better attitude. She’d be able to stop crying. Yet somehow I ended up believing more while knowing less about God. The title The Opposite of Certainty comes from a Paul Tilith quote, “Doubt is not the opposite of faith; it’s one element of faith.” And Anne Lamott’s take on that, “The opposite of faith isn’t doubt, it’s certainty.”

As humans on this precarious planet, we’re being asked to have profound faith, whether we’re religious or not. It’s a relief to learn that it’s okay to doubt, question, and get angry. When I was diagnosed with breast cancer, I had a lot of commentary for God. I mean really? Hadn’t I already punched the figurative frequent buyer card for tragedy in this life? Who would take care of my needy and complicated family if something happened to me? My prayer was, “enough already!” At some point, I gave up trying to figure out WHY, and concede that with my finite human mind, I might not understand the infinite ways of the universe. I realized that sometimes faith feels like being devastated, asking for help and not giving up. Faith became more a muscle than an idea.

Q. How did you manage to take time for yourself without feeling selfish? Any advice for others who might struggle with this?

A. Taking time for myself has always been difficult. I’m wired to put everyone else’s needs first, and wait my turn without inconveniencing anyone. I tell myself that it’s okay when my turn is skipped – one more time – because I am stronger than most, and besides I’ll be happy when I’m sure that the people I love the most are taken care of. Crisis has a way of revealing our bad habits, especially those that are not sustainable. Eventually I realized that it was selfish not to take care of myself, and bring my family my most tired, resentful, depleted self. I started doing small things while Mason was hospitalized, taking a walk in the afternoon, resting when tired (revolutionary!), eating the healthy meals I’d foist on my kids, and getting much needed emotional support.

No one could do this for me, not my husband, certainly not my kids, because it was never their job. The breast cancer diagnosis brought home my mortality, which I greeted with indignation, like you don’t understand I have things to do, people to take care of. I was forced to prioritize my health and healing. I couldn’t push my body without consequence, no one can. We have to take care of ourselves, physically, emotionally and spiritually to do the hard work of mothering, this rewarding and relentless job.  The stakes are so high; we’ll do whatever it takes, sacrifice anything; we gird, try harder, and push aside our needs for another day. There is so much judgment coming from the inside and the outside. And I really believe it’s rooted in that desperate place where we just want everyone to be safe and we really want to know that we’re on the right track, that there is a right track.

This is such hard work, and no one is doing it perfectly. Notice the self-talk. Can you cultivate the loving voice you’d use with a child with yourself? Would you tell a five year-old to muscle through when she’s hungry and tired? Get yourself a glass of water, some apple slices, or make yourself a cup of tea. Ask for help. You are worthy. I can’t say this enough – you are doing hero’s work. And if you need more persuading to take gentle care during these times of profound stress and uncertainty, I’ll remind you that taking good care of you teaches your children to take good care of themselves.

Q. Telling your story is so brave. I’m so glad you shared this journey as it will be a guide for many. Has opening up (or “telling the truth“) helped your healing process? 

A. Telling the truth is always healing in my experience, though sometimes the hardest thing to do because it exposes our vulnerabilities, those so-called imperfections that we’re so sure are ours alone. There’s this isolation that we humans can stumble into, that voice that tells us no one feels like we do; we’re the only ones who are so afraid, so uncertain or unsure of ourselves. I’m often surprised when I speak my fears aloud, my mistakes, pettiness and people nod or kindly laugh in recognition. Writing the book was difficult and healing; it gave me a chance to feel what wasn’t safe to feel while living the experience. The fine-toothed-combing of the experience helped me notice the improbable good in the story – and in my life. I tricked myself into writing everything down (except what would embarrass my children) by thinking that no one would see the manuscript.

When I got stuck, Alan reminded me, “just tell the truth.” I could do that, just me and my computer. Then the book found a publisher, and eventually the galley copies arrived, so much for hiding out. But it comes back to my motivation for writing, the hope that my experience can help others.  I’ve survived prolonged, extreme uncertainty – while not losing my mind or my ability to laugh, my marriage or my faith in God and humanity. There’s an alchemy that transforms painful experiences when we can help others, gold wrought in knowing we’re not alone in our tender places and fears, that good can come out of the circumstances we’d never, ever volunteer for.

My National Book Review Q&A with Anne Lamott

“Having faith means not giving up; it's more of a muscle than an idea.”

“It is a book about life with a capital L. About marriage, motherhood, the unfathomable salvation we find in friendships and nature,” writes Anne Lamott in her foreword to Janine Urbaniak Reid’s The Opposite of Certainty (HarperCollins Christian, W Publishing, Thomas Nelson). Reid’s young son was diagnosed with a brain tumor, living with chemotherapy and MRIs until his tumor hemorrhaged when he was 13, causing a massive brain injury that required him to learn anew how to walk, speak, and eat. Reid recounts his story, and her family’s story as they navigate this new terrain, and Reid grapples with her own tendencies toward perfection. “People like me try to control everything we possibly can to be safe,” Reid writes in her deeply affecting memoir. “Sometimes, we’re able to pretend that the ground underfoot is bedrock and the sky above predictable.”

In short, finely honed chapters, Reid recounts extraordinary challenges and evokes these experiences with warmth, wit and bit of irreverence. Quite simply, she writes: “My hope is to offer a companion in uncertain places, a place to identify in the heart of what’s real and what matters.”

Best friends Lamott and Reid live in the San Francisco Bay area, and Lamott led this conversation for The National. 

AL: What moved you to write The Opposite of Certainty? How did the book -- and how did you -- change in the process?

JUR: I wrote the book that I wanted to find in a crisis, a story that’s faith-filled, but didn’t look away from the fear and doubt that platitudes can’t touch. I wanted to figure out what had happened to me and the people I love the most, as if understanding might give me mastery over an out-of-control life. I was also trying to find me again after having my life distilled into the role of “Mother, then Desperate Mother,” always with a side of wife, friend and sober woman. But who was I anyway, and did I just lose or find me?

There was an element of “telling on” people early in the process. The first draft was very much “Annoying People and the Stupid Things They Said.” This was wrung out after a few thousand drafts, transformed into a grudging compassion for all the flawed humans (like me) who really meant to show up or say the right thing.

Ultimately, I didn’t find control, and I wasn’t able to tame the uncertainty. But it turned out that I could survive what was real and true, without pretending to be better, smarter or more spiritually evolved. What changed – of course – was me. I came out of this story with my own body scarred, stronger but softer, more filled with faith and less ruled by should-s, knowing less about God but believing more.

AL: What was revealed in re-living this life-defining experience through writing?

JUR: Memoir needs a rearview mirror to contextualize the story, a safe distance to feel, see and hopefully understand. I wrote about a period of time when my son Mason was young, and the medical crisis that changed everything. The writing gave me the opportunity to feel what I’d been forced to lock away – terror, grief, anger. That wasn’t fun. But there was also good unearthed in the fine-tooth-combing of the experience, threads of grace that I’d been too busy to notice. It was challenging because the medical crisis wasn’t really over while I was writing, it had just morphed into a new stage. Mason was still recovering. We all were.

I write about not being able to tie neat bows around difficult experiences, but I think that’s exactly what I wanted to do. It was a quest for a genuine optimism. And there’s a place where optimism bleeds into denial (which I call a close personal friend).

I wasn’t honoring Mason by pretending the challenges he lives with aren’t as difficult as they are. Then again, I couldn’t allow myself to drown in the unmanageability of it. It was like learning to swim. I couldn’t propel myself above the cold water of this experience no matter how hard I tried; but when I struggled, I sank.

There’s a profound spiritual truth in learning to float. Stop resisting, breathe, relax and notice what is. That’s what the writing did for me. And like any good swimmer (and these are definitely ocean waters) I reflexively braced for the next wave.

Of course, I wanted to propel us to the ending of my choosing and land in a safe place. It turned out there was a miracle, but it wasn’t recognizable through my old prescription lenses. The writing put this into focus.

AL: How did your relationship with faith change?

JUR: Somehow, I picked up the idea that a spiritually evolved person wouldn’t feel like I do. She’d have answers, a better disposition, and probably weight 10 pounds less. It comes back to the inspiration for the title The Opposite of Certainty. Paul Tilith said, “Doubt is not the opposite of faith, it is one element of faith.” And your take on that, “The opposite of faith isn’t doubt but certainty.”  I grew up thinking prayer was something you did on your knees. If you were good - preferably perfect - God might listen.

But turns out spiritual grace is a balm for the vulnerable, weak places, the so-called imperfections. I just need to ask for help. And having faith means not giving up. It’s more of a muscle than an idea. It’s strengthened whenever I take another step not knowing where my foot is going to land, when I do the-next-right-thing while afraid, and speak a kind word rather than lashing out in fear. It lives in the doing rather than the figuring out. Writing and living the story, I began to recognize the improbable good that shows up, and notice the strength I’m able to tap, especially when I’m exhausted and it all feels like too much.       

AL: How have you managed to live such an uncertain life for so long? What did you learn that might help the rest of us walk through the uncertain and unknown?

JUR: First I need to say what’s true to someone who won’t expect me to be better than I am. There’s a tendency in this world to meet tragedy with cheerful memes and social media posts shaming us into positive thinking. It’s as if we could skip the terrifying, exhausting, painful parts and jump to wisdom and insight. But I need to say what is. I can’t touch real gratitude until I get real.

I need to admit I’m afraid, petty, judgmental and ungrateful. My focus clears and I’m more likely to spot the improbable good in this place I’d prefer not be.

It helps to come back to where my feet are, blue socks on a grey rug. Right here, right now am I okay? Not next week, not next year, right now in this moment. Am I okay? If yes, that’s a lot and let’s rest here. If not, let’s sit together until this moment passes. Then we’ll breathe through the next together too. It’s like labor. A new reality is being born and we’re not sure how long it will take or what it will be like. Healthy snacks are good. Lots of water and rest. And pretty soon, hour by hour, we’ll come through another day, and eventually things will shift on the inside or on the outside. We is another essential. We’re not alone, even when separated by buildings and walls. We’re here, the other humans, and we’ve done hard before.

JUR: Janine asks Anne:  As my closest friend during the living (and the writing) of the story, you are a prominent character in the book. What’s it like to live the story then read about it from the perspective of a character rather than the author?

AL: It is the most intimate experience, both remembering the journey I was on with you, and hearing you tell us the story, in a gently literary way. It was like hearing you sing a song, that I had contributed to in it’s early stages, that you had brought to fruition.

Living on unstable ground and writing about it: my interview with Caroline Leavitt

The following is an interview with bestselling author Caroline Leavitt, as posted on her blog.

It's not just Annie Lamott telling you to read this gorgeous heartbreaking and healing memoir, Janine Urbaniak Reid's THE OPPOSITE OF CERTAINTY, it's me, too! About raising a boy who becomes mysteriously ill, about hope, and faith, and so much more.

When Anne Lamott tells me I have to read something, I always do. And I fell in love with Janine Urbaniak Reid's fierce and moving memoir, which had me holding my breath. She's been published in the Washington Post, Chicago Tribune, San Francisco Chronicle, and widely syndicated. Hoping to bring humanity into the healthcare discussion by sharing her experience as a mother of son with a brain tumor, she penned a piece for the Post which went viral. She has been interviewed on national news networks, and continues her work as a spokeswoman for healthcare justice.

I'm thrilled to host her here. And honored to know you, Janine!

I always ask writers what was haunting them into writing their book? What did you expect to learn or to be changed by, and what happened instead? 
I was driven to understand what had happened to me and the people I love the most. What did it all mean? I wanted to fit all the pieces together and figure it out, as if understanding might give me mastery over an out-of-control life. I was also trying to find me again after having my life distilled into the role of Mother, then Desperate Mother, always with a side of wife, friend and sober woman. But who was I anyway, and did I just lose or find me? 

Sifting through each draft was its own kind of awakening. My first editor wrote “what did you feel?” in the margins over and over. So I went through the manuscript estimating what a woman might feel in these situations. My reflex was to fill in the blank as if I’d missed something living the experience. Then I realized that not feeling was the point. The numbness was as real as rage. There are times you are forced to tuck away feelings because you have to. This spoke to the strange advantage of growing up in alcoholism and my aptitude at burying terror like nuclear waste. Now that was interesting. The threads started coming together. 

Ultimately I wasn’t able to tame the uncertainty. But it turned out that I could survive what was real and true, without pretending to be better, smarter or more spiritually evolved. What changed – of course – was me. I came out of this story with my own body scarred, stronger but softer, more filled with faith and less ruled by should-s, knowing less about God but believing more. 

This astonishing story, of how your little boy became mysteriously ill, and how you both traveled this journey and changed from it had me gripped on every page. Was writing it difficult, as in reliving it—Or was there a kind of grace in putting down what happened, all the while knowing that things worked out?
I often wondered why I thought writing this book was a good idea. It was emotional. But the story had to come through me and out of me. I had the chance to feel the things – like the terror and grief – that weren’t safe to feel at the time. That wasn’t fun, but necessary. There were also threads of grace that I’d been too busy or exhausted to really see; the synchronicity of people who showed up just when we needed them; the wherewithal of my closest friends and my divorced and re-partnered parents; the random but unforgettable people who arrived for just one critical moment. 

I was still living the story while I was writing. Many days the reality outside my little writing cave, was difficult. So I was experiencing a version of the story in real time, wondering what it meant to the ending that I really wanted for our family, the one I’d been propelling us towards chapter by chapter. 

I painted a lot while writing too, mixing the colors and moving the paint helped get out the parts of the story that didn’t neatly fit into words. I wrote better when I was painting. That’s one of my paintings on the cover.

So much of this extraordinary book is also about your faith and how it changed. What stopped me was that your son might have had this brain tumor all his life and then it shows itself, which is a lot like things that happen in life.
Like a lot of things in life: we anticipate and prepare, sure we know what’s true, what we’re protecting ourselves from, then there’s a tremor, a hint of something just outside our line of sight. No one really knows what’s next. It’s a vulnerability that -- until just a few months ago -- many of us could successfully tuck away and often ignore. As a young mother, I struggled to control more than was actually possible. My hope was that if I navigated exactly right and checked the correct boxes my kids would be okay – then I could be okay. I thought I had a profound faith. But I still thought faith was something I had, like a AAA card. It was a hedge against the limitations of my self-will. 

There was this illusion that I could shape the circumstances of my life if I had enough faith or the right kind. Maybe the tumor would go away. I gripped so tightly because I was holding out for a miracle I could recognize. What I got was grace that paints in the abstract. The paint by numbers landscape of my life turned into a Jackson Pollock masterpiece. Miracles hidden in the messiness of the experience. Turns out prayer isn’t about controlling my circumstances. It’s about accessing strength and love, bolder and more magnificent than my limited creativity would’ve allowed.

I had to stop putting limits on God, and concede that, on this side of the sky, I am not going to understand why painful, awful things happen. But I can start to notice how I’m cared for in impossible situations. 

 One of the things I love best in the world is that people who are loving sharing their loving friends with the people they love, which is what Annie Lamott did for me by introducing us.  I believe this is something we should all pay forward, don’t you?
You were one of the first outside of my closest family and friends to read the finished book. I cried when I received your email. You got it. You shared your story with me. That’s meaning, truth and connection. It’s what I long for in this world where I can still feel isolated despite social media and Zoom gatherings. It’s that, “I see you.” Every day it’s up to me to offer that to someone else, especially people -  like us – who are moved to share their vulnerabilities. It’s something I can do when circumstances inside and outside of my house are overwhelming. I might not have the power to change the big picture, but I can practice being present for others, and do what I can to help someone else. 

I was moved by the story of your marriage, how it became weathered by impending tragedy, and in a way tenderized by it, too, giving it more substance. There is one place where Annie says, “Don’t worry, I’m not going to say something hostile like God doesn’t give you more than you can handle.” We are always given things we cannot handle, but do you think handling them is the point? 
Well yes and no. There’s no family without showing up, following through, and pushing past self-imposed limits. But I believe that asking for help is really the point. It’s an antidote to the loneliness that lives inside like a dormant virus. The most alone I’ve felt as an adult is being married yet alienated from my partner. Alan is one of my biggest teachers because he holds a mirror for me on the days I’d rather not see my reflection. It’s my job to heal what causes me to cringe. This is true in all of my relationships. And there are plenty of times that ending a relationship is the right thing to do. But marriage means you can’t leave so easily. It’s forced me to address what keeps me from being fully present, those places in myself that are afraid, judgmental and withholding. And we wouldn’t still be married if Alan wasn’t continuing to do his work too. We’ve considered giving up, but so far there’s a grace that shows up for us and through us, a grudging compassion and we move into the next day as a couple, and there’s something beautiful in this.  

What advice would you give someone grappling with the unknown, which is really every freaking minute in life? Do you find that despite all of this, your faith is even stronger
Whatever you’re feeling right now is okay. I believe gratitude is a gateway to a better attitude. Yet I still need to speak my scared, petty, if-you-only-knew thoughts aloud to someone who won’t hold them against me. Saying what’s true clears a channel, and enables gratitude to take hold. So we start on a foundation of what’s real, and the loving nod of a friend who gets it. I will never tell you not to be afraid, but I might point out that you’ve done hard before. 

I am often afraid and unsure, but this might be what courage feels like. I always thought that if I had the right kind of faith I’d meet uncertainty with the kind of enthusiasm some people bring to extreme roller coasters. That’s not me. And it comes back to the inspiration for the title The Opposite of Certainty. Paul Tilith said, “Doubt is not the opposite of faith, it is one element of faith. And Anne Lamott’s take on that, “The opposite of faith isn’t doubt but certainty.” 

Faith looks like not giving up today. And my faith is stronger after everything I’ve been through, more a muscle than an idea.

What’s obsessing you now and why?
At this very moment I am thinking I should be getting more done, thinking more clearly, not as affected as a I am by the global pandemic, as if finished essays and clean bathrooms would shore me up in some way. Mason is in the midst of drug treatment for recent tumor growth. We’re all dealing with the pandemic on top of everything else. I channel my powerlessness into fortification, my 21 century version of hunter gatherer. We now have three kitchen drawers devoted to supplements. There is plenty of Vitamin D, C and zinc. It’s something I can do.

What question didn’t I ask that I should have?
What’s it like to realize your lifelong dream of publishing a book during a global pandemic?

Alan asked if I’m excited, and I remembered that anxious and excited live very close on the emotional number line. I tried to take a wise author photo to show you what a smart and thoughtful book I’d written, but I couldn’t do it. It was like telling a five-year-old not to smile at Disneyland. It’s a can-you-believe-it photo. I try not to worry about the timing (but really I worry about most things) because maybe my story will resonate and help, especially now. It’s life – all these feelings, all these experiences the full range of shades and colors all at once.

How I learned to live a life I don’t hate, in circumstances I do

I wish this didn’t feel so familiar. Life feels dangerous and unpredictable, what’s known and what’s safe morphs into something unrecognizable from day to day. I exited the life I’d planned twelve years ago. I thought it was just a detour. My young son was diagnosed with a brain tumor, a low grade, stubborn roots under the sidewalk kind of tumor that was impossible to remove and difficult to tame. “It is what it is,” Mason would say, and despite chemotherapy we cultivated an uneasy peace moving from one MRI scan to next. That is until Mason’s tumor hemorrhaged when he was 13, causing a massive brain injury and changing everything. He wouldn’t wake up for weeks, and he’d have to learn to walk, talk and eat all over again. Mason is 22 now, undergoing another round of chemotherapy. We don’t know what’s next. 

My family has lived outside the safe zone for a long time, but just like NASA brings back useful discoveries from space (foil blankets and portable computers), I’ve found some pressure-tested strategies to stay sane and sometimes calm in unpredictable atmospheres. Living with uncertainty and finding the reality between denial and catastrophizing requires practice and support, but it’s possible to do it and even experience joy now and then. 

You don’t have to wait for circumstances to get better before you do. 

This was mostly wrung out of me after 11 surgeries. It felt disloyal to have needs much less wants. I would sleep, exercise, breathe when or if... I was fine, word stretched thin and threadbare. But it wasn’t until I admitted how afraid and overwhelmed I was -- how I didn’t think I could do _____ that I felt a shift. Telling the truth admitting exactly where I was and starting from there was essential. 

Step off the spinning wheel of obsession

My brain is wired to anticipate all the awful things that might happen. I have never once defaulted into thinking “It is so great that life is unfolding in this weird unpredictable way. How fun!” On the upside this means I am well insured with a stockpile of canned soup and toilet paper. But there’s a stress point when planning and preparation devolve into worry and obsession. This is a phone a friend moment. I need someone who is not currently terrified to filter my perceptions. What is happening today?  What’s real vs. fear? What action, if any, can I take right now?

It’s okay to be afraid.

When we discovered Mason’s tumor had grown again, I felt afraid because…it was scary. Reassurance is helpful. But it has never ever helped to be told “don’t be afraid” by another human. Usually this advice comes from someone who is uncomfortable with my emotional state. This is not a person who is able to help in that moment, so I move on to someone who can say, “No wonder you’re afraid. Can I get you a glass of water?” My dad once said, “If you can’t have fear and faith, what’s courage?” My faith isn’t a manifestation so much of what I feel, but rather what I do. 

Be where your feet are

I’ve got photographic memories of linoleum floors in six hospitals. Someone told me to be where my feet are. I paused and focused on my shoes. It’s a strategy that gets you out of your whirling mind and into this moment. Then do what’s next, not the entire to do list. Send the email. Complete that form. Often I catch myself mentally rewriting the past, what I should’ve done that could’ve prevented this, whatever this is. The result is nothing changes but I’m distracted and not present where I’m needed right now. Similarly, I try to master the future by considering looming possibilities, as if the preemptive anxiety provides extra credit when the real thing come about. This is where I cultivate a gentle voice in my mind, “pink Nikes on hard wood.” Slow deep inhale. And that simple prayer, “Help.” 

Security can’t be stockpiled.

I am among the first at Costco at the hint of a crisis. I buy what safety I can. I do the same thing with information, convinced that more will insulate me against unknown and scary outcomes (at least I won’t be hungry/ at least I won’t be taken by surprise). When my son was first diagnosed we found trusted advisers, brain tumor experts. Then I did the deep dive on Google, over and over again. Friends intervened. Just for today, don’t spend hours reading about the worst things that might happen. We need a trusted source, an alternate to information inflammation. This is our challenge in the world right now. As crises develop by the minute, I’m reminded that my safety can’t really be stocked in a go box. When security is so tenuous in the outside world, I have learned to go deeper inside.

Be there for someone else

Connection makes it possible to get through days that are too hard and too long. I’ve found that the surest way to feel acceptance and love is to let it flow through me without stopping to judge whether someone is worthy or not. It’s easy to give to people I’ve chosen as my friends, and the family members who I love the most. Yet every interaction is an opportunity to put kindness into the world instead of more annoyance and anger. We can practice in small ways. I regularly let others in front of me in traffic (though my reflex when cut off is still to mutter and curse). I try to pay attention when someone helps me – a sales clerk, doctor, nurse – to look this person in the eye and see them. I try to be a good friend. Once in a while a friend apologizes for bringing up her struggles. “It’s nothing, really, not like what you’re dealing with.” Talk please. It’s a reprieve, a break from my problems. And it’s not nothing, we each have our challenges.

Give yourself a break. 

In moments of overwhelm, my default is to try harder, skip lunch, avoid exercise and hide from people who might encourage me not to do this. It’s not helpful. I had to root out an old idea: if I take care of myself (laugh, enjoy, relax) I am not being loyal to whoever is in crisis, or appropriately panicked for whatever danger is looming. Maybe God really will smite me for my inattention to detail and brazen joyfulness. Also there’s the illusion that pre-emptive suffering is like a practice SAT test, that all the better students have prepared themselves for every scenario. We get more accomplished when we look away from the problem even for a half hour. Walks help, fresh air, endorphins, lunch, a cup of tea. There have been times when I wasn’t able to leave Mason’s bedside, this is where I learned to inhale, slow and deep. Exhale slowly. The root of the Hebrew word for spirit is breath or air. In every moment, we have access to this spirit that animates us and the universe, the force that brings daffodils through the mud every spring.

Faith is not knowing but knowing

Jolted by a crisis I never imagined and couldn’t plan for, I somehow accessed the necessary strength and knowing to deal with it. I did it once, then I did it again. This is where faith comes in, spiritual and otherwise. My friend Joan always said, “You’ll know what to do when the time comes.” (If you don’t know, then the time hasn’t come yet.) I plan for what I can, but much of what lies ahead is unknowable, climate-wise, virus-wise, health insurance-wise. Still I’ve dealt with unknowable before, so have you. I mostly don’t feel brave and prepared. But maybe this is what courage feels like. 

The Improbable Good

I thought I knew about God. I was raised in a religion that taught me If I was a good girl, good things would happen. But what does that mean when something really bad won’t stop happening? I couldn’t fix my son, no one could. I prayed, often very angry. I meditated while scared thoughts zoomed around my still body like mosquitos. I found books by people who weren’t afraid to ask questions for which there are no easy answers. I told the truth about my doubts and fears. As philosopher Paul Tillich said, “Doubt isn’t the opposite of faith. It’s one element of faith.” Platitudes don’t hold up in inclement weather. I had to ask myself, “what can I believe in?” Circumstances didn’t change, but I did. I began to notice the improbable good, even on the worst days. The neurosurgeon answered his own phone right when we needed him. The nurse’s aide coaxed a laugh from mostly silent Mason. Sun through the window. Therapy dogs. “Look for the helpers,” Mr. Rogers advised in times of trouble. This is where I see good and grace. I call it God, the source of love and strength big enough – so far -- for any circumstance. I’m not sure the name matters so much as the free flow of kindness. Some days we get to be the helper. Others we learn to surrender to our human limitations and receive. Grace shows up for us, through us and sometimes despite us. 

If I were to speak to the young mother who was me on the afternoon of Mason’s diagnosis when the chasm opened in the earth separating the future from the life I’d planned, I’d tell her, “You’ll be okay. It’s just that your definition of okay might need to change.”

Telling the truth

This is a strange sensation suddenly coming out of my writing cave, where it's just me, a worn wooden desk, strong Earl Grey tea, and two nice lap cats alternating shifts. It's time to introduce myself to the nice people who I hope will someday read my book. I'm an introvert with an incongruous desire to have my voice heard out loud and in public. I am a writer. I've always been a writer. This started at a very young age when I learned to not talk back. I remember staring at my dad, lips pressed together and vowing, "I will remember everything and I will tell." Well that's what I did, sort of. Lucky for the universe that kind of telling was wrung out of the first drafts of this - my first -  book. It was a process. I tried to write the book that I wanted to find in a crisis, hopeful and faith-filled that didn’t look away from doubt, terror, and the uncertainty that spiritual platitudes can never touch.  By draft 502, compassion started seeping into the manuscript for all those people who - like me - really meant to say the right thing, really intended to show up, and might've tried. 

We are all so human. And really that's the point. We are vulnerable in these bodies, on this odd planet that is prone to storms, earthquakes and gorgeous sunsets.  It's all true and some days it's too much for me to hold, at least alone. That's another point. I might've noticed, after my world was knocked off its axis and began orbiting my son's unpredictable brain tumor, a lot of other people -- most everyone -- live with something. We might feel alone in our particular circumstance. But the perfect family, the perfect children, the perfect life are all just catalog fodder -- a reason to buy another Pottery Barn rug to replace the one that the old dog destroyed, or more plastic bins because we all know that we will be happier, better adjusted and maybe even sexually fulfilled if we just organize better. Believe me I've tried. Regrettably the only thing that seems to work is telling the truth to a trusted friend. Some days like today, the truth is I'm overwhelmed, a little scared too.