Words Have Power

Words are powerful. What you say, and how you say it, have lingering effects. And I’m not just talking about words spoken to someone else. Also included in this list are the words we speak out loud to ourselves (I’m not the only one who talks to herself, am I?) and the words we think to ourselves. 

We know this. 

But sometimes, something happens that serves as a flashing-light reminder of just how true that is.

Last week, I had two such incidents.

My neighbor and I were chatting and catching up. She’s almost forty years older than me and was talking about some new pain she’s experiencing in her lower back/side area. Thankfully, all x-rays came back fine, no problems identified. She found herself in a situation that I know all too well. Tests are negative, big problems ruled out, but still no answers about what’s causing the pain and no clear direction given on how to alleviate the pain. 

“I tell you, living with chronic pain is no fun,” she said. 

I know.

“I don’t know how you do it,” she said.

I bit my tongue.

She went on a bit, describing the discomfort, and again said, “I really don’t know how you do it.”

I looked at her and said, “I don’t have a choice.”

I do it, I live with chronic pain, because I have to. Because there is no alternative.

And though not her intention at all, and though I’m not fully sure why, her words got under my skin and bothered me. 

The second conversation occurred the next day, during a telehealth appointment with my rheumatologist. Near the end of our conversation, I asked her about a trip my family and I are thinking of taking. 

“We’re thinking about going to Hawaii,” I said. “But I haven’t flown since before my son was born, and he’s 14. I haven’t flown since I have this condition. And I’m worried, because of the blood clot I had after my biopsy.”

(In case you missed it, I had a second biopsy in September 2020. A “routine” procedure that was supposed to provide some answers to my rheumatology team. No answers, and I developed a “very rare” blood clot in my left calf. You can read about it here.)

She answered my questions, told me some things I could do before, during, and after flying. And then she said something that has been on repeat in my head since she said it.

“Oh, go, you need to have some fun.”

And that advice, given with a smile through a screen, was encouragement and validation I hadn’t realized I needed. 

In the Words of Michelle Obama

Michelle Obama: Quotes to Live By was a gift to myself. It’s a small book, containing a collection of over 170 quotations.

And my copy is full of sticky notes. 

Here are some of the quotations that stood out to me:

Every single child has boundless promise, no matter who they are, where they come from, or how much money their parents have. We’ve got to remember that.
– National Arts and Humanities
Youth Program Awards, November 2016

“I never cut class. I loved getting As. I liked being smart. I liked being on time. I thought being smart is cooler than anything in the world.”
– Elizabeth Garrett Anderson School, London, April 2009

“We can’t afford not to educate girls and give women the power and the access that they need.”
– Mulberry School for Girls Skype conversation, June 2015

“Women in particular need to keep an eye on their physical and mental health because … we don’t have a lot of time to take care of ourselves. We need to do a better job of putting ourselves higher on our own to-do list.”
Real Health magazine interview, November 2007

“You can’t make decisions based on fear and the possibility of what might happen.”
60 Minutes interview, February 2007

“You don’t come up with the right answer if everyone at the table looks the same and thinks the same and has the same experience.”
– White House screening of Hidden Figures, December 2016

“In those darkest moments, you will have a choice: do you dwell on everything you’ve lost, or do you focus on what you still have and find a way to move forward with passion, with determination, and with joy?”
– Oregon State University commencement, June 2012

“What matters are the true friends you make, the activities you throw yourself into, the books you read, the skills and knowledge you acquire. Those experiences — the ones that make you stronger, smarter, and braver — are what really matter.”
– People Magazine essay, October 2014

Just Haven’t Met You Yet

Sometimes I read for information. 

Sometimes I read for inspiration.

Sometimes I read for pure enjoyment.

Just Haven’t Met You Yet by Sophie Cousens is a novel I picked up because I wanted something fun and entertaining.

Sophie Cousens wrote that book. Just Haven’t Met You Yet is the delightful escape I was hoping it would be. But it’s also more than that.

This week, I wanted to share some of the passages that really moved me.

“Ted looks thoughtful for a moment, then he says, ‘Someone told me that growing up feeling loved allows you to go on to love other people. Maybe love is simply a huge chain letter, passed down through the generations. The details of the stories begin not to matter’.”

“ ‘She was a part of me,’ he says softly, the pain palpable in his voice. ‘When you are with someone for a long time, you grow into each other, like adjoining trees with tangled roots. It’s hard to extricate yourself and find the part that’s left — who you were before’.”

“ ‘This is not something that gets better,’ Gerry says with a calm smile. ‘So, if I can’t look back, and I can’t look forward, I’m forced to live here, right now. Today I can sit around a campfire and talk to my friends. Today I can watch the sunset, even if the outline is getting hazy. Today I have made a new friend and I’m enjoying her company and her vibrant conversation.’ He makes a single, slow nod in my direction. ‘The Roman poet Horace said Don’t hope or fear, but seize today, you must! And in tomorrow put complete mistrust.’ All any of us have is today’.”

“People like to fill in the gaps, to paint their own picture, but no one really knows the truth of someone else’s story.”

“I have no illusions about happily ever afters — I know life will bring its challenges and nothing is forever — but I hope we might be happy today, and for as many todays as we are lucky enough to have.”

My Son’s Optimism For the Future Continues to Amaze Me

“Ryan didn’t know it, but his response soothed my heart and made me feel good. Here was a flashing neon sign that our son was okay — more than okay. Here was the confirmation I needed that despite all the changes and the scary situations, Ryan felt safe and secure. After a year-and-a-half of distance learning, masked walks to our favorite neighborhood cafe for smoothies to go, and celebrating holidays with grandparents over FaceTime, Ryan was okay. More than that: he was optimistic, positive, and confident.”

I’m proud to share the news that the paragraph above is taken from a recently published essay, “My Son’s Optimism For the Future Continues to Amaze Me.” 

You know how, as parents, you often wonder if you’re doing enough? If you’re handling a difficult situation well-enough? 

This was my son’s way of saying, “Yep. You’re doing enough.”

You can click here to be re-directed to Moms Don’t Have time to Write to read the essay in its entirety.

Waves, Walking, and Pain

The boardwalk along Moonstone Beach – Cambria, California

Spring break.

My husband, my son, and me.

A road trip to one of our favorite spots on the California coast.

4 days, 3 nights.  

And pain. Lots and lots of pain.

I started the week with high hopes and lots of gratitude. Last year’s spring break was spent at home. This year, fully vaccinated and boosted, it was possible for us to spend time in one of my favorite places — Cambria, California.

Being in Cambria is good for my soul. Away from my daily responsibilities, away from the noise of the big city (no helicopters, no sirens, no car alarms), I feel calm. Serene.  

The whole time we were there, I kept waiting for the good vibes to kick in. I was waiting for the pain to decrease and fade into the background all together. 

It never happened.

By the time we got home, I was in agony. My legs were beyond hurting. My legs felt weak, as if any moment I might topple over or my knees might suddenly decide to buckle.

Almost 500 miles roundtrip with me as the driver.

Walks and hikes, up to 5 miles each day.

Back at home, back to the responsibilities of bills, laundry, and watering my plants, I felt so disappointed. 

Why can’t my body just work the way I want it to? 

That question came to mind on our first night home, as I stood under our shower, thankful I no longer had to make due with the barely-there water pressure of our hotel. 

A few days later, the answer came to me.

My body did do everything I wanted it to do.

I planned and packed.

I drove and sang. (It doesn’t get any better than driving along a stretch of the 101 while my husband, my fourteen-year-old son, and I all sang along to Hey Jude.

I walked and watched. (We saw elephant seals up close and dolphins from a distance.)

My body did do everything I wanted it to do. 

I have to keep repeating that to myself. 

It might not have been easy or pain-free, and it might never again be. That’s the big difference when you live with a chronic illness and chronic pain. 

But, you make the decision to do it anyway. 

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.