No Cure For Being Human

No Cure For Being Human (And Other Truths I Need to Hear) by Kate Bowler. 

Wow.

And then after the initial “wow,” several adjectives come to mind — beautiful, heartbreaking, touching, profound, funny, moving.

I am blown away by the incredible way in which Ms. Bowler wrote her story — being diagnosed with stage 4 colon cancer in her 30s. She didn’t just write about it, she invited readers in. And along the way, shared some truths I know I needed to hear.

Here are just some of the passages that moved me:

“Before when I was earnest and clever and ignorant, I thought, life is a series of choices. I curated my own life until, one day, I couldn’t. I had accepted the burden of limitless choices only to find that I had few to make.”

“From my hospital room, I see no master plan to bring me to a higher level, guarantee my growth, or use my cancer to teach me. Good or bad, I will not get what I deserve. Nothing will exempt me from the pain of being human.”

“It’s easy to imagine letting go when we forget that choices are luxuries, allowing us to maintain our illusion of control. But until those choices are plucked from our hands — someone dies, someone leaves, something breaks — we are only playing at surrender.”

“The problem with aspirational lists, of course, is that they often skip the point entirely. Instead of helping us grapple with our finitude, they have approximated infinity. With unlimited time and resources, we could do anything, be anyone. We could become more adventurous by jumping out of airplanes, more traveled by visiting every continent, or more cultured by reading the most famous books of all time. With the right list, we would never starve with the hunger of want.
But it is much easier to count items than to know what counts.”

“I did not understand that one future comes at the exclusion of all others.
I had wanted two kids.
I had wanted to travel the world.
I had wanted to be the one to hold my mother’s hand at the end.
Everybody pretends that you only die once. But that’s not true. You can die to a thousand possible futures in the course of a single, stupid life.”

“The terrible gift of a terrible illness is that it has, in fact, taught me to live in the moment. Nothing but this day matters: the warmth of this crib, the sound of his hysterical giggling. And when I look closely at my life, I realize that I’m not just learning to seize the day. In my finite life, the mundane has begun to sparkle. The things I love — the things I should love — become clearer, brighter.
Burdened by the past, preoccupied by the present, or worried about the future, I had failed to appreciate the inestimable gift of a single minute.”

“It takes great courage to live. Period. There are fears and disappointments and failures every day, and, in the end, the hero dies. It must be cinematic to watch us from above.” 

“It became clearer than ever that life is not a series of choices. So often the experiences that define us are the ones we didn’t pick. Cancer. Betrayal. Miscarriage. Job loss. Mental illness. A novel coronavirus.”  

“Time really is a circle; I can see that now. We are trapped between a past we can’t return to and a future that is uncertain. And it takes guts to live here, in the hard space between anticipation and realization.”

And the book’s appendix is brilliant. Ms. Bowler has written a list of “clichés we hear and truths we need,” including:

Things People Say: Make every minute count. 

A More Complicated Truth: Life is unpredictable. You’re a person, not a certified account.

Call Us What We Carry

April is National Poetry Month which means today is the perfect time for a post about Amanda Gorman’s collection Call Us What We Carry

This was a book I read slowly, little by little, to savor the rhythm and eloquence of the words. My copy is full of sticky notes, marking the pages where I felt especially moved. Here are just a few such passages:

From “At First”:

“We became paid professionals of pain,

Specialists in suffering,

Aces of the ache,

Masters of the moan.

March shuddered into a year,

Sloshing with millions of lonely,

An overcrowded solitude.”

From “& So”:

“Since the world is round,

There is no way to walk away

From each other, for even then

We are coming back together.”

From “Fury & Faith”:

But the point of protest isn’t winning;

It’s holding fast to the promise of freedom,

Even when fast victory is not promised.

Meaning, we cannot stand up to police

If we cannot cease policing our imagination,

Convincing our communities that this won’t work,

When the work hasn’t even begun,

That this can wait.

When we’ve already waited out a thousand suns.

By now, we understand

That white supremacy

& the despair it demands

Are as destructive as any disease.” 

From “The Miracle of Morning”:

“While we might feel small, separate & all alone,

Our people have never been more closely tethered.

The question isn’t if we can weather this unknown,

But how we will weather this unknown together.

So, on this meaningful morn, we mourn & we mend.

Like light, we can’t be broken, even when we bend.”

And, in case you missed it, you can click here to read my post about Ms. Gorman’s collectible gift edition of The Hill We Climb

Rhythmic Ryan

March 30th, 2022. 

My son turns 14 today, and my mom turns 77 today. 

They are “birthday buddies.” My son arrived about a week earlier than expected — the most incredible gift for our family!

Naturally, today I’m thinking even more about my son. About the young man he’s becoming. Sometimes I look at him and think Who is this almost-as-tall-as-me, hands-bigger-than-mine, deep-voiced teenager? 

Back in fifth grade, my son was given an assignment — Think of an adjective that describes your personality, but it has to start with the same letter as your first name.

He chose “rhythmic.”

Rhythmic Ryan absolutely fits.

We’ve been enjoying the rhythm of books and music since I was pregnant. My husband and I read Goodnight Moon to my growing baby bump. For several years, that was the last book read at bedtime. (We went through several copies over the years.)

During those nights of teething and just-not-going-back-to-sleep-no-matter-what that every parent knows, I danced with Ryan to songs such as “Angel Baby” by Rosie and The Originals and “Can’t Take My Eyes Off You” by Frankie Valli.

Now, as a fourteen-year-old, it makes me so happy to see music and books continuing to play a huge part of my son’s life. 

Readers, which adjective would you choose to describe your personality? Remember, it has to start with the same letter as your first name. 

It’s a difficult question for me. I automatically think of “Weird.” It’s a word doctors have used (more than once) when speaking to me about my autoimmune disease. (You can click here to read “The Hard Realities I’ve Faced After My Doctor Told Me, ‘You’re Just Weird’.”) 

I’m on the search for a new word. 

But for today, I’m happy to celebrate Rhythmic Ryan and Ageless Anne (my mom).

The Matzah Ball

Sometimes you find a book, or a book finds you, and you just want to tell everyone about it. You want to grab the pom-poms you never owned and create a cheer for this book. Then you want to place the book into the hands of readers everywhere. 

That’s how I feel about The Matzah Ball by Jean Meltzer.

The Matzah Ball is a holiday romance with a twist. It’s a Hanukkah romance, and our main character, Rachel, lives with a chronic illness. Right away I was intrigued, and the book did not disappoint. (Additionally, the author is a Jewish woman living with a chronic illness — myalgic encephalomyelitis.)

I loved getting a glimpse into some of the Jewish traditions I’m less familiar with. I loved seeing Rachel and all the messiness that comes with a chronic illness depicted on the page. And, I loved that this book gave Rachel, and by extension – me as the reader, the happy ending I was hoping for. 

I read a library copy which I tagged with many sticky notes, which means I now need to buy my own copy at my next bookstore visit. 

This week, I’m excited to share just a few of the passages that stood out to me:

“Turning beneath the covers, she blinked and took a careful accounting of how she was feeling. Would it be a good day or a bad day? She could never be certain.
Some mornings she woke up feeling well, only to find herself completely depleted two hours later. Sometimes it was the opposite. She would crash for days at a time, with no ability to do even the most menial tasks. Her disease was constant but fluid. It peaked and ebbed with only one discernible pattern. Everything she did, everything, from writing two pages to carrying the groceries one block to her apartment, came with a kickback.
It was her normal.”

“There was no way to know how long these crashes would last. It could be hours, days, weeks…or even years. The only way to avoid the flare-ups was through a very unscientific method of pacing oneself and rest.
The problem was, of course, that Rachel was awful at pacing herself or resting.
On good days, she pushed even harder. On bad days, she still pushed…usually making herself way worse in the process.”

“She wasn’t ‘out’ about her disease. She wasn’t out about …anything. Sitting in a wheelchair meant accepting you were disabled and dealing with awkward stares from healthy people.
Most of all, and because she had a disease with a name like chronic fatigue syndrome, there was always a fear tucked away inside of her that someone would look at her and say she was doing this for attention. That she really wasn’t that sick. And so, though a wheelchair would certainly make her more mobile and give her a higher quality of life, she often chose to stay home.”

It’s Stressful

There’s been a lot going on these last few weeks. And I’m not even talking about the big scary stuff such as the heartbreaking devastation in Ukraine. 

I’m talking about things in my own little corner of the world. 

I had some medical tests done recently. Here’s the thing about that — it’s stressful. It’s stressful knowing you need the tests in the first place, it’s stressful waiting for the tests (because for me, it took several weeks to get the appointment), and then it’s stressful waiting for the results.

I was very glass-is-half-empty about it.

I was sure these tests would not come back with good news.

I tried to explain my reasoning to my therapist. 

For years now, I’ve had many symptoms that aren’t quite “right.” Not red-flag wrong, but enough to cause a doctor to pause and order more tests, just to be sure, just to rule out something else.

For years now, those tests have all come back fine, or at least, okay-enough. But as I told my therapist, I feel like there are only so many “get out of jail free” cards a person gets. I felt I must have used up my limit by now.

There’s the other part of me that feels as if I’m waiting to be further punished. As if some higher force is looking down at me thinking, “Ha. You’re talking about pain in your leg. You’re saying it’s harder to sit, to stand, to walk, to drive. You think this is bad now. I’ll show you bad.”

But then a friend of mine gave me another way to look at it. 

She told me that the higher power up there figures I have enough going on. This higher power knows I’m dealing with crap (aka pain and the complications that come with chronic pain) every day. So they’re not going to give me something else to deal with. My plate is already full.  

My friend used a few curse words in our conversation that I will leave out of this blog, but she made me laugh, and helped me see things in an entirely different way. 

It’s true. I am dealing with “crap” every single day. Some degree of pain. There are medications to take. Medications to try. Appointments, consultations, labs, scans. Heat, ice. Rest, exercise. It doesn’t stop.

And in case you were wondering, my tests came back with good news. 

Where the Light Enters

I admit. I didn’t walk into the bookstore looking for First Lady Dr. Jill Biden’s book. I was vaguely aware of it, but it wasn’t at the top of my ever-growing want-to-read list.

Yet, turns out I couldn’t resist the buy 2 get 1 display. And Where the Light Enters: Building a Family, Discovering Myself  was one of the books I purchased that day as part of that sale. And even after buying the book, it didn’t sit on my shelf for months before I picked it up. I felt there was something about this memoir. And I was right. 

This week, I’d like to share some of the passages that touched me:

“Every scene on those walls, every role I’ve played, has taught me so much about what family means. I’ve learned — and am still learning — about the bonds that make up a family. Few of us would reduce those bonds, that gravitational force, to something as simplistic as blood. Families are born, created, discovered, and forged. They unfold in elegantly ordered generational branches. They are woven together with messy heartstrings of desire and despair, friendship and friction, grace and gratitude.”

“I realized early on that teaching was more than a job for me. It goes much deeper than that; being a teacher is not what I do but who I am.”

“There’s always a part of you that wants to step into your children’s lives and make the right decisions for them — pick them up when they stray and put them on the safest, easiest path, just as we did when they were small. But the tragedy of being a good parent is that the better you are at your job, the less you will be allowed to swoop in and protect the people you love most in the world. You have no choice but to trust that they’ll do their best and hope that fate will be kind.”

“Over the years, I’ve heard so many people talk about teachers in a way that doesn’t reflect the reality of teaching that I know at all. They think it’s a job for people without ambitions, that teaching doesn’t take a lot of skill, and that teachers have short hours and summers off. I’ve taught in a lot of different environments, but one thing is always the same: teaching is rewarding, but it’s a tremendous challenge, too.”

“There’s something profoundly optimistic about teaching. We are taking the best of what humans have to give — lifetimes of knowledge, wisdom, craft, and art — and handing it over to the next generation, with the hope that they will continue to build, continue to make our world better. It’s a conversation with our past and future selves at once, a way of saying, Look what we’ve done! Now what will you do with it?

“So why do we do it? We do it for that spark in a student’s eye when an idea falls into place. We do it for the moment when a student realizes she’s capable of more than she’d thought. For the chance to hold a student’s hand as she begins to explore this wild, incredible world through books and equations and historical accounts. We do it because we love it.”

Forever a Role Model

It’s Women’s History Month, which has got me thinking about women I grew up admiring. 

One of my earliest “famous” role models was Sally Ride. Famous, as in I could find a listing for her in our World Book Encyclopedia. (And I say “famous,” because in terms of role models, I looked up to my mom.)

From the time I was in fourth grade until the time I was a senior in high school, I wanted to be an astronaut. No one told me I couldn’t. After all, I was smart. I was good in math and science. And, Sally Ride had done it first. Other women had followed. There was no reason I couldn’t. 

I admired Sally Ride so much, and tried to learn as much as I could about her. I remember saving up my money to purchase To Space and Back, a book Ms. Ride wrote with Susan Okie. 

My goals and career dreams changed. But my admiration for Sally Ride never did. Inside the copy of To Space and Back, I have a ticket stub from 2005. A ticket stub that allowed me entry to hear Sally Ride speak at the Los Angeles Times Festival of Books, when it was held on the UCLA campus. 

It’s been a long time since I’ve read this book. I used to bring it into my classroom, and share it with my students. My son and I have read it together. But for quite a while now, it has sat on a bookshelf (along with other space-themed books).

And that’s the power of role models – and books. They stay with you, and keep a special place in your heart. 

By the way, in case you missed it, you can click here to read my blog post from November 2020 about my autographed picture of Sally Ride. 

Readers, I’d love to know. Who is a woman you admire? A woman you consider a role model? Let me know in the comments section.

A Timeless Anthology

I’m not a podcast person. But I am most definitely a book person.

Zibby Owens is a podcast-about-books person. More than that, she is an author, publisher, and CEO. And a mom of four.

I recently finished reading Moms Don’t Have Time to Have Kids: A Timeless Anthology edited by Zibby Owens. The anthology is a collection of essays written by more than forty authors who have all been featured on the podcast Moms Don’t Have Time to Read Books. The book is divided up into categories, things that moms (and dads) don’t have time to do: Sleep, Get Sick, See Friends, Write, and Lose Weight.

Here’s the incredible part about this book — I found myself relating to so many of the authors. The specifics may differ (where we live, how many kids we have, the ages of our kids) but the emotions are universal. 

Not only did I enjoy reading this anthology, but I have also added to my ever-growing list of “want-to-read” books. Many times, after reading an essay I found myself looking up the writer and then adding their books to my Goodreads “want-to-read” list.

Allow me to share just a few of the book’s gems:

From “Room for One” by Allison Pataki:

“I could read the surprise on my husband’s face. He’d asked me what I wanted for my upcoming birthday and I’d answered quickly and simply: a night away. A night away from him, away from home, away from our daughters, our dog, our laundry — all of it. One glorious night in a hotel room by myself.”

From “While I Was Sleeping” by Camille Pagán: 

“But mostly, I’d been the one to grow. As mothers, we do so very much because we can. Because we think we should. Because who else will do it? The rest of our families will.”

FromThe Little Pink Unicorn” by Heather Land:

“These days, I have a new perspective on self-sacrifice. I will always give my love, my time, and my attention to the ones I care about most. But from now on, that has to include me. I’ll probably never quit tending to the needs of my children (when they have their own), but I will continue to remember that I should love and tend to my own heart as well.” 

13 Ways Writing Is Easier Than My Autoimmune Disease

It all started from a 5-minute writing exercise. I used a prompt from Barbara Abercrombie’s A Year of Writing Dangerously: 365 Days of Inspiration and Encouragement (great book!), and when my timer went off five minutes later, I knew I had written the beginning of something. That first draft went through some significant changes.

13 Ways Writing Is Easier Than My Autoimmune Disease is the final result. 

I’m happy to say it was recently published at The Mighty. You can click here to read the essay in its entirety.

Dismissals and Rejections – of Symptoms and Submissions

“It’s not a realization that came to me easily or early on in my life as a chronic illness patient. It took me several years to finally recognize it and to see what had been in front of me all along.

Not until I marked my submission tracker with that most depressing word, “Declined,” did I make the connection. I realized that having a piece of writing declined and leaving a doctor’s appointment without any answers share many of the same emotions.” 

Those paragraphs are taken from my personal essay, “Dismissals and Rejections — of Symptoms and Submissions,” recently published at Spoonie Authors Network. You can click here to read the essay in its entirety.