Announcing My Motto for Life

July 2019 – A memorable morning; a perfect example of “stubborn gladness”

I think I’ve discovered my mantra, or as close as I’ll get to having a mantra.  

Maybe mantra isn’t the right word.  

My motto. 

My slogan.

My maxim. 

Stubborn gladness.”

I discovered this delightful phrase while re-reading Elizabeth Gilbert’s Big Magic: Creative Living Beyond Fear. 

This was my second read of Ms. Gilbert’s book.  The first time was three years ago.  That time, I read the book, used my highlighter to mark “stubborn gladness,” and that was the end of it.

This time, “stubborn gladness” grabbed me.  It stopped me from reading.  I attached a purple Post-It to the page.  And, surprisingly, it’s been my biggest takeaway from this read.

Ms. Gilbert explains that it is her destiny to be a writer.  “I’ve decided to meet that destiny with as much good cheer and as little drama as I can – because how I choose to handle myself as a writer is entirely my own choice.” 

She goes on:  “My ultimate choice, then, is to always approach my work from a place of stubborn gladness.” 

This time, when I read that passage I immediately saw its relevance to my life with an invisible disability.

I certainly don’t approach doctors’ appointments, lab work, and MRIs with “stubborn gladness.”  

And there’s nothing “glad” about daily pain.

But I most definitely, absolutely, positively approach my day-to-day life with “stubborn gladness.”

That’s the reason why I do the things I do.

The reason why I bought myself a new bike.

The reason why I go for neighborhood walks with my son and coffee walks with my husband.

The reason why I went horseback riding this summer.  (Before he started preschool, we took Ryan to Disneyland for a “big adventure.”  It’s the one and only time he’s been.  The summer before he started kindergarten, we took Ryan on his first hotel trip, spending a few days in Cambria, California.  This summer, before starting middle school, Ryan chose horseback riding as his big adventure.)

I do these things, big things and little things and everything-in-between-things with “stubborn gladness.”

Because I can’t change my health.  I can’t make my autoimmune disease go away.  I have to learn to live with it, to handle it, to live with my life as fully as I can – with “stubborn gladness.”

Sending Some Encouragement Your Way

September 12th is National Day of Encouragement. 

In honor of that day, I send this week’s blog out to you as a virtual hug.

Because, in the the 9 years I’ve been living with my autoimmune disease, I’ve learned that everyone is going through something.

We could all use some encouragement.  

A large part of the way I taught involved encouraging my students.  With a hug, with a high five, with a smile, with a positive word or two. 

But I can’t reach all my readers and look at you directly and tell you that I’m proud of your effort.  Tell you that I think you’re doing a great job.  Tell you to keep at it. 

Instead, I’ll share these words of encouragement that help me, and I hope they’ll help you:

“Faith is taking the first step even 

when you don’t see the whole staircase.”  Dr. Martin Luther King, Jr.

 

“Believe you can and 

you’re halfway there.”    – Theodore Roosevelt

 

“Nothing can dim the light which shines 

from within.”    – Maya Angelou

 

“Believe anything is possible and then 

work like hell to make it happen.”   Julianna Marguiles

 

“What lies behind us and what lies before us are tiny matters 

compared to what lies within us.”   Ralph Waldo Emerson

 

“Promise me you’ll always remember:

You’re braver than you believe,

And stronger than you seem, 

And smarter than you think.”   

Christopher Robin, from A. A. Milne’s Winnie the Pooh

 

And now it’s your turn readers. 

Share the encouragement. Pass along some words of support, of hope, of inspiration to someone else. 

Plus, you can help encourage me by sharing my blog. Tell a friend who may be interested in reading my weekly posts about books, boys, and bodies. Invite them to sign-up. Share it on social media.

I appreciate it! 

No Picky Readers in This House

Ryan (age 3) and I, reading at our public library

Within the first week of school, my son’s sixth grade English teacher noticed his strong reading skills, and he asked Ryan what types of books he likes to read.

“It was hard for me to answer at first,” Ryan told me that afternoon after I picked him up from school and he filled me in on his day. 

I smiled.

Of course it was hard to answer.

My son may be a bit of a picky eater (he refuses to try macaroni and cheese, yet he loves a daily serving or two of cucumbers and carrots). 

But he certainly isn’t a picky reader.

Currently, we are reading Martin Luther King: The Peaceful Warrior – a biography about Dr. Martin Luther King, Jr. Most of our reading happens at bedtime as part of our nightly routine. It’s a serious book filled with facts that are not easy to read and discuss. But they are important and necessary not just because they are a part of our nation’s history, but our family’s history as well. (We are a mixed race family, and Ryan was understandably astounded to learn that not-too-long-ago my husband and I would not have legally been permitted to marry.)

Before this nonfiction book, Ryan had read the latest installment of a popular graphic novel series – Dog Man #7: For Whom the Ball Rolls. That book isn’t serious. It’s silly and off-the-wall and entertaining (for him). I enjoy the clever titles referencing literature classics (Lord of the Fleas, A Tale of Two Kitties, Brawl of the Wild).

Later that afternoon, I got the rest of the story.

“I told Mr. V. I like to read books about space,” Ryan told me. (Reaching For the Moon). 

“Yes you do,” I said. 

And basketball (Dream Big: Michael Jordan and the Pursuit of Excellence). 

And famous people (Who Was Rachel Carson?).

And dogs (Because of Winn-Dixie).

And girls with magical powers (Matilda). 

And kids in middle school (Diary of a Wimpy Kid). I silently added all these to the list.

So I will happily take this trade-off. 

I’ll deal with a somewhat limited rotation of dinner menus in exchange for my son’s plentiful book appetite. 

Who Else Looks Up Words While Reading?

 

While reading Anna Quindlen’s Nanaville: Adventures in Grandparenting, I couldn’t stop thinking about a book in my son’s collection – The Word Collector by Peter H. Reynolds. 

Perhaps you’re wondering why I chose to read a memoir about being a grandparent.  After all, my son is only 11 years old.

The main reason – I was studying the book’s structure.  As I work on my own memoir, I struggle with knowing how to end it.  When is my book done? 

While a completely different subject matter, Ms. Quindlen and I have something in common – she will not stop being a grandmother.  I will not stop being a woman living with an invisible disability.  I wanted to see how she handled it in her own memoir.  (Spoiler alert – with the announcement of grandchild number two on the way.) 

However, while reading the book, looking at her organization, and enjoying amusing grandparent anecdotes, I also felt like a “word collector.”  I read a lot and yet, I found myself jotting down words that were unfamiliar to me. 

Let me share a few with you:

Homunculus – a very small human; the human fetus

Carapace – the hard upper shell or bony covering on the back of turtles, armadillos, and crustaceans

Chassis – the base frame of a car

Purview – the range, as of operation, activity, or concern; scope; extent

Usurious – related to the practice of usury (the lending of money at an extremely high rate of interest)

Anodyne – a painkilling medication; anything that soothes

But now those words are a part of my collection too.

Readers, I’m curious. Any new words you’ve added to your own collection lately as a result of your reading?  Share in the comments section below.

It’s Bigger Than Basketball

Air Ryan

 

My son just completed a summer basketball league through our local Parks and Recreation. 

Though Ryan is eleven years old, and now a middle schooler (gasp!), up until his request to play basketball this summer, he had never wanted to enroll in any sort of  enrichment class or activity (either after-school or on weekends).

And that was always fine with me.   

You can click here to be redirected to RoleReboot to read my personal essay, “Why My Son Doesn’t Need ‘Enrichment’ Classes,” that was published back in 2018 to find out more.

But that was then.

Ryan decided he wanted to play basketball, and play he did with one hundred percent heart and soul – at every practice and every game. 

About half-way into the summer session, there was a major scheduling snafu.  Only ten children showed up at game time.  The other team Ryan and his teammates were scheduled to play, kids from a neighboring park, didn’t show.  And the coaches didn’t show.

But we had 10 kids who came to play.  2 referees ready to work.  And 1 park employee prepared to keep track of points, fouls, and timeouts. 

The 10 kids were split into 2 groups of 5, and my husband and another parent were asked to serve as coaches.

My husband coached the way we parent.  Not stressing the outcome, but praising the effort.  Paul walked over to “his team,” introduced himself, asked each kid his name and gave each one a fist-bump.  (And yes, Ryan was on his Daddy’s team.)

At each timeout, Paul shared fist-bumps and high-fives with his group of kids.  He clapped while they played, encouraged them to pass the ball and communicate with one another.  And for most of the game, he let these boys just run the court and play.

When the game was over, (Ryan and his teammates won), my husband had them all line up to shake hands with their competition.  And while the other coach had begun to walk away from the court, my husband walked over to him, shook his hand, and congratulated him on a good game.

That’s a big part of the lesson I wanted Ryan to take away from this basketball experience.  

Yes, it’s been great to see his layups improve.  

Yes, I’m impressed with his defensive playing. 

Yes, his long-range shots are dramatically better than they were when he started.  (And he made a big shot in the last game of the season!)

But ultimately, I’m proud of his good sportsmanship and his wholehearted effort.

And the biggest takeaway is one Ryan provided himself.  The ability to know yourself, to trust yourself.  

It was Ryan’s choice to play basketball.  On his own time-table.  When he was ready.

 

What Everyone Should Know About Teachers

   Before – This is what my classroom looked like at the end of summer vacation 2010, a week before the start of a new school year.

 

Quick.  Name five things you think teachers do during a typical school day.

What did you come up with? Depending on your past experiences, your list might look something like this:

“Correct papers,” “yell,” “staple,” “organize,” “erase.”

But in my twelve years’ experience, I’d add these verbs to the list: 

Dare.

Give.

Listen.

Model.

Nurture.

You can read my personal essay/list “The A to Z List of Verbs Teachers and Students Practice Daily” by clicking here and being re-directed to iTeach literary magazine.

 

After – The finished result: an organized, colorful, inviting (I hope) classroom. All it needs now are students!

5 Inspirational Books

Did you know Friday, August 9th is National Book Lovers Day?

To celebrate – the day; the power of books; and those of us who find comfort, knowledge, and entertainment between their pages; I’d like to share with you books I have found helpful, inspirational, and just plain good.  Books I have turned to (some of them more than once) as I navigate this journey of living with an invisible disability.

The Gratitude Diaries by Janice Kaplan.  You can click here to read my blog post citing some of the passages that most touched me.

Chronic Resilience by Danea Horn.  This is one of the few books I ordered from Amazon without ever having seen a physical copy of the book.  I’m so glad I did.  I’ve read it a few times now.

Year of Yes by Shonda Rhimes.  You can click here to read the blog post I wrote while in the middle of reading this book. I will tell you that this was one of those books that started conversations among people I didn’t know, people who saw me carrying this book and reading this book and felt a connection to it as well.

Everybody’s Got Something by Robin Roberts.  This book came recommended by a friend of mine (you can read my blog post about it here). 

And that led me to:

From the Heart: Eight Rules to Live By by Robin Roberts.  You can click here to read my blog post, gushing with praise for this book. 

 

 

Readers, I’d love to learn about the books you turn to for help, for guidance, for strength, or just a plain-ole-good read!  Feel free to share in the comments section.

10 Tips and Tricks for Parents With Invisible Disabilities

Don’t forget to take care of yourself and show yourself some love!

 

I’m the proud mother of an 11-year-old son. I’m quick to boast, and tell you about Ryan’s curiosity (he asked me what the nurse does with his blood after a blood test.  In all my years, I had never thought to wonder). I’m quick to brag about his kind heart (without prompting, the way Ryan holds Grandpa’s hand while walking through a museum, and slows his steps down to match Grandpa’s). I’ll smile and tell you how Ryan loves to dance and sing and is equally entertained by the Beatles, Stevie Wonder, Justin Timberlake, and Prince.

But I’m not as quick to talk about myself. I don’t immediately tell people about my invisible disability, the rare autoimmune disease coursing through my body (and on bad days, I think it’s cursing my body). It’s called Undifferentiated Connective Tissue Disease and has overlapping symptoms of lupus, myositis, and rheumatoid arthritis.

Those words begin an essay recently published at Mother’s Day Magazine.  I have been living with my autoimmune disease for nine years.  There are moments when I think I’ve figured things out, I’ve got a handle on things.  And then there are the moments when I feel so confused, so sad, so frightened, so much pain that I just want to sink to the floor and cry. 

But I can’t.  

Because I have an 11-year-old son who needs to be fed; who needs to be taken to school, the library, and the dentist; who needs me.

So, I have developed a few “tricks and tips” that help me get through the day.  Click here to read “10 Tips and Tricks for Moms Living with Invisible Disabilities.”  (Here’s one I’ll share right now – Eggo Waffles count as dinner.)

 

The Tale of My Healthy Breakup

One of my favorite places to walk – Cambria, California.

This week, I have a story to tell you about a failed relationship.

We “were set-up, kinda, sorta like a blind date. Actually, more like when your friend dates somebody and then realizes you should be dating them instead.”

It wasn’t an easy relationship.

“I didn’t want to give up on us.  I wanted to stick it out, because that’s what you do in a long-term relationship.  You don’t walk away the first time things are hard or unpleasant or uncomfortable.  You try to work on it and work it out.  You try again.”

But ultimately I had a “healthy breakup” – from my Fitbit.

For the whole story, click here to be re-directed to The Mighty and read my recently published personal essay “Why I Broke Up With My Fitbit.

 

Stop Calling Me ‘Weird’

Now that’s a weird sight.

What does “weird” mean to you?

I think it’s weird when I walk into Trader Joe’s and find there are no flowers for sale.

I think it’s weird when I’m scanning through the radio stations in the car and hear the same song playing on two different stations at the same time.

You may think it’s weird that I even listen to the radio.

Back in September of 2018, I wrote a blog post after my rheumatologist called me weird.

This week, it’s a blog post about a different doctor but the same adjective.

I met with a doctor specializing in chronic pain management.  I didn’t go into the appointment with very high hopes.  After all the doctors I’ve already met with and all the tests I’ve already had, what could this doctor have to tell me?

Well, she told me that my pain doesn’t follow predictable patterns.

I knew that.

She told me she’s not quite certain what’s going on in my body.

No one really is.

She hypothesized and starting thinking out loud about different tests.  I vetoed the nerve conduction test and electromyography.  I’ve done it twice, and all I can say is it felt like a form of torture.

I stood on my toes.  

I stood back on my heels.

I walked down the hallway.  

I crossed my legs.

The doctor reviewed the results of previous MRIs.

And her conclusion?

I have “weird pain.”

I didn’t agree to a new drug.  I didn’t agree to a test that would involve inserting a needle into my spine.

And I didn’t let the tears flow in that exam room.  

I thanked the doctor for her time, and on the drive home, I cried.

I don’t know why doctors think it’s okay to tell a patient they are weird or their pain is weird.  

I’d like to suggest different adjectives:  Abnormal. Uncommon.  Atypical.  Irregular.

At least those adjectives sound more professional, more clinical in nature.

You can click here to read my personal essay “The Hard Realities I’ve Faced After My Doctor Told Me, ‘You’re Just Weird’.”