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’.”

 

10 Absolute Promises

Ryan, age 3. Safety first. Helmets have always been the rule; even when Ryan first sat on his tricycle in our living room!

“Can you promise me that there won’t be any more?”

That was my son’s question as we got ready for bed last Friday night.  (For my out-of-California readers, we had a couple of big earthquakes here last week.)

As I gave Ryan his nightly hugs and kisses, he asked me to promise him that everything was back to normal.  I couldn’t promise that.  

He asked me to promise him that if there were any after-shocks they would be too small to feel.  I couldn’t promise that.  

But I did promise Ryan the most important thing my husband and I have always promised him – to do everything we can to always keep him healthy and safe.

Throughout the night, I peeked in and watched Ryan sleep.  And I thought about how much of his life, and my life, is out of my control.  

I can’t make promises about earthquakes.  

But, I absolutely can make these promises to my son:

 

1.  I promise to always regard you with a mix of awe and wonder.

2.  I promise to always have chocolate in the house. 

3.  I promise that we will never run out of toilet paper.

4.  I promise that our family will always have money to buy books.

5.  I promise I will always cry at certain parts of certain movies (splash-down in Apollo 13 and the” there’s-no-bathroom-for-me-here” scene in Hidden Figures).

6.  I promise I will always yell at the TV when we watch basketball games.

7.  I promise to always attend your school functions including performances, conferences, and Back-to-School nights.

8.  I promise to always print out pictures, maintain our family photo albums, and periodically update the pictures on our refrigerator.

9.  I promise I will always feel colder than you and will annoy you when I ask you, again, if you’re warm enough.

10.  I promise that long after you’ll probably want them, I will still always have an endless supply of hugs and kisses.

 

How Much Is Too Much?

Ryan and I at The Huntington’s Lily Ponds

 

9 years.  

Next week, marks the ninth anniversary of my life with an autoimmune disease.

Although at the time, we didn’t realize we were dealing with a permanent situation.  My left calf was swollen.  We thought a visit to the emergency room would make it somehow become un-swollen, and that would be that.

How wrong we were.

9 years later, a lot has changed.  I’m no longer a classroom teacher.

But the part that hasn’t changed is my desire to be an active, engaged, loving mother.  For me, that means I make chocolate chip cookies for dessert a few times a week.  (Disclaimer – they’re the Pillsbury, pull-apart-and-bake-kind.)  And for me, that means every summer is full of what a friend of mine refers to as “field trips.”

My son and I (sometimes with my husband, sometimes with my dad, and oftentimes just the two of us), venture around the city exploring different venues and museums.

My son graduated from elementary school three weeks ago, and since then we have been to:  the GRAMMY Museum, the Getty Center, the Aquarium of the Pacific, Discovery Cube Los Angeles, miniature golfing, the library, and the beach (twice).  

The one that did me in, that almost brought me to tears (of pain and sadness and frustration) was our visit to The Huntington Library, Art Collections, and Botanical Gardens. 

We hadn’t been there in many years.  So many years, in fact, that Ryan had no memory of having been there before.  My husband, son, and I explored for about two-and-a-half hours.  That’s all my legs could do, and that’s all Ryan could do before his energy decreased and his appetite increased, and he was ready to leave. 

I loved being there.  Marveling at one of my favorite paintings, Pinkie, enjoying the colorful sight of the rose garden, thinking of my pen pal while in the Japanese Garden, smiling as we stood beside the lily ponds.  

But we didn’t see all the Huntington has to offer.  

We couldn’t.

I couldn’t walk any more.  The pain was intense.  My knees felt as if someone had whacked them with hammers.  My legs felt weighted down.  My shoes felt like they had magnets attaching me to the ground, making it hard for me to lift my foot and take a step.  

And yet, I had wanted to go there.

I had wanted our family to have this special day’s experience.

But I felt awful, until I went to sleep that night.

Was I glad I went?  Yes.  

Do I want to go back?  Yes and no.  

How much pain do I put myself in, how much do I push myself to see, to smell, to touch, to hear all that I wish to experience even when I know that it is physically difficult for me to do?

Nine years, and I still don’t have the answer to that question.

 

Stop Asking Kids This Unnecessary Question

Do you remember what you said when people used to ask you, “What do you want to be when you grow up?”

For many years of my childhood, I always answered the same way.

“Astronaut.”

Now, people (friends, neighbors, grocery store clerks) ask my eleven-year-old son.  

Sometimes Ryan’s answer resembles a long list of dream jobs.  He rattles them off, one after the other.  “Doctor.  Firefighter.  Astronaut.  Basketball Player.  Singer.”

Other times, Ryan narrows it down to one career.  “Professional singer” or “NBA Player.”

I’m in the middle of Michelle Obama’s riveting memoir Becoming.  A friend of mine gifted it to me at Christmas, but I have put off reading it.  I savored the idea of the book.  I wanted to prolong the joy and inspiration I felt certain this book would bring.

And I was right.

Because from the get-go, the first page of the preface in fact, Michelle Obama nailed it.  

“Now I think it’s one of the most useless questions an adult can ask a child – What do you want to be when you grow up?  As if growing up is finite.  As if at some point you become something and that’s the end.”

Every chance I get, I remind Ryan that he doesn’t have to choose one career. 

I remind him that former President Obama was also a lawyer and a Grammy-winning author. 

I remind him that former First Lady Michelle Obama held many roles.  In her words:  “I’ve been a lawyer.  I’ve been a vice president at a hospital and the director of a nonprofit that helps young people build meaningful careers.  I’ve been a working-class black student at a fancy mostly white college.”

During high school, I got tired of the question.  When asked what I wanted to be, I simply answered, “Happy.”  And I enjoyed a twelve-year teaching career.

Whatever path Ryan chooses, whatever bends or forks in the road that he must navigate, I hope he adds “happy” to the list of all he’ll become.

 

Just For Fun:

And because I love Michelle Obama, think she’s a fantastic role model and a fun lady, let me share three of our favorite YouTube videos featuring Michelle Obama and Jimmy Fallon in case you haven’t seen them.  And even if you have seen them, they’re always fun to watch again.  

In this video, Jimmy Fallon and Michelle Obama demonstrate the “evolution of mom dancing.”

This is part 2 of the “evolution of mom dancing.”

And this one, from December 2018, features Michelle Obama and Jimmy Fallon surprising visitors in 30 Rock elevators.

 

Our Family’s Version of Summer Brain Drain

Have you heard of “summer brain drain?”  

It’s a catch-all phrase representing the lack of learning that happens during summer vacation.  The time when children aren’t actively engaged, aren’t learning, aren’t practicing what they’ve already learned, and aren’t reading.

I’m proud to say it’s not an issue in our house.  

And don’t think that means I’m bragging. 

And please don’t think that means I have my eleven-year-old son sitting down, completing worksheets and practice books. 

Because I don’t.

It’s just that in our house, there is always some sort of learning or practicing going on.  My son is, thankfully, an enthusiastic reader.

I like to think it’s because my husband and I read Goodnight Moon to him each night as soon as I found out I was pregnant.  I like to think it’s because my son is growing up knowing books are valuable and special and important.  Ryan receives a book on each birthday, at the start of each school year, and scattered throughout the year for different occasions and holidays.

The hard part for us is tracking his summer reading time.  Ryan is participating in the Barnes and Noble Summer Reading Program which requires him to document eight books he’s read.  No problem.

The summer reading program through the public library is a different matter.  That one requires Ryan to track the number of hours he reads.  And that’s the tricky part for us.  I can easily count the minutes we read at bedtime each night.  (This week, it’s a family-favorite:  Because of Winn-Dixie.) 

But it’s because reading is such an integrated part of our family that it’s all the other moments that are harder to keep track of.  

I came downstairs the other day to find Ryan quietly sitting on the couch, reading CD liner notes.  A few days ago, we browsed in our local book store, picking up random books, reading the back covers and the first few pages of books that caught our interest.  Sunday mornings, Ryan scans the sports page looking for news about his favorite basketball team.  

It all counts as reading.  It’s just hard to count.

In an effort not to drain my brain this summer, we’ll just make an estimate.

 

 

 

Announcing: The 20 Wishes Idea

Twenty Wishes book (photo by Paul Kennar)

Do you ever feel stuck?  Like each day sort of just creeps into the next.

Do you ever feel lost?  Like you’re not quite sure what you’re doing or why you’re doing it. 

Do you ever feel like you’re in search of a spark?  Like there’s something out there, waiting for you, and if you could find it your whole life would experience a domino-effect of positive consequences.

I do.  Sometimes.  Sometimes it’s because I’m 43 years old, and my body feels much older and weaker than my chronological age.  Sometimes it’s because I miss my teaching career.  

Which is why I enjoyed the last fiction book I read, Debbie Macomber’s Twenty Wishes.  

The title is based on the premise of the novel.  A group of women each decide to create a list – “an inventory of wishes.”  Not practical to-do items, but “twenty dreams written down.”  Each woman had a different list of “wishes and hopes for the future.”  One character wanted to learn to belly dance.  Another character bought herself a convertible.  Still another desired a pair of red cowboy boots.

While reading about these women and their wishes, I thought about what would be on my list of wishes.

– Visit my pen pal, Aya, in Japan.

– Travel to Paris with my husband and son.

– Drive a convertible – with the top down.

– Go for a gondola ride in Venice, Italy.

– Explore the Kennedy Space Center in Florida.

– Sightsee in New York including stops at the Statue of Liberty and Empire State Building.

 

Writing my own list is more difficult than I thought it would be.  As one character so aptly stated, “Sometimes I think we’re afraid to admit we want certain things.  Especially things that contradict the image we have of ourselves.”  

I’m still working on my list.  Most of my items have to do with travel, and it’s not so easy for me to just pack up and go.  So I need to work on creating a list that also includes items that are more easily achieved here in Los Angeles (and not as expensive as traveling to Japan). 

Meanwhile, those are mine.  Readers, I’d love to read your wishes.  Feel free to share in the comments section.  

 

 

Here’s Why Invisibility Isn’t Always a Super Power 

My son and I playing handball. Disabilities don’t all look the same.

Close your eyes for a moment and picture a disabled person.  Keep that image in mind.  

What does she look like?  

How does she behave?  

What can she do?  

What can’t she do?  

What does she need help with?

 

Now, tell me if these descriptions match the picture in your imagination:

A woman and her son ride their bikes in their neighborhood.

A woman spends 30 minutes in her garden, weeding, pruning her bougainvillea vine, re-arranging large pots, and then sweeping up the mess she made on the sidewalk.

A woman goes for a leisurely walk in her neighborhood, bending over to smell a light pink rose, stopping to admire a butterfly that is perched on a leaf.

A woman sees her ninety-year-old neighbor arrive home in an Uber.  Her neighbor struggles to hang the grocery bags from her walker.  The woman goes across the street, and carries the bags for her neighbor, helps her neighbor into her house, and brings each bag into her neighbor’s kitchen.

 

What if I told you the woman above was me.  And what if I told you that according to the state of California, I am also a disabled woman.  Do my actions match the mental image you had?

Probably not.  Most people have a very limited idea of what a disabled person looks like.  I know I used to.

Which brings me to my newest essay.  Last week, The Mighty published my personal essay “Why ‘Invisibility’ Is Not a Superpower When It Comes to Illness.”  You can click here to read it. 

And remember, just because you can’t see someone’s pain, doesn’t mean they aren’t hurting.

 

 

Who Else Wants to Be Like RBG?

It began like this:

I heard some things.  I read some things.  I liked those things.  I learned some more.  And now I, like countless others, proudly declare my admiration and respect for Supreme Court Justice Ruth Bader Ginsburg.

Back in March, my husband and I visited the Skirball Cultural Center to see the exhibition Notorious RBG: The Life and Times of Ruth Bader Ginsburg.  I was in awe of all this remarkable woman has accomplished, and I was astounded by all that I didn’t know.

We then watched the RBG documentary, and my interest continued growing. 

Now I just finished reading Notorious RBG: The Life and Times of Ruth Bader Ginsburg by Irin Carmon and Shana Knizhnik.

You can read the book, watch the film, and learn the facts.  But here are a few things that are staying with me:

  1. This woman doesn’t stop.  No matter what.  Two bouts with cancer.  The death of her husband.  She still keeps going, keeps fighting.  Going to work, fighting for equality. 
  2. Looks can be deceiving.  Upon first glance, you may think RBG is just a small little woman.  Don’t be fooled.  She’s powerful in mind, body, and spirit.  (The woman works out with a personal trainer twice a week.)
  3. Theirs was a beautiful marriage, a union of true partners.  (RBG’s husband, Marty, passed away in 2010. They were married for 56 years and knew each other for 60.)
  4. RBG always sees the bigger picture:  I think gender discrimination is bad for everyone, it’s bad for men, it’s bad for children.  Having the opportunity to be part of that change is tremendously satisfying.  Think of how the Constitution begins.  ‘We the people of the united States in order to form a perfect union.’  But we’re still striving for that more perfect union.  And one of the perfections is for the ‘we the people’ to include an ever enlarged group.”

 

Continuing Our Family’s Anti-Perfection Lesson

True Perfection – Ryan, Four Days Old

The other night during dinner, my son told me that some of his classmates told him he’s a “perfect student.”

“I told them there’s no such thing as perfect,” he said to me.

I was glad.  I’ve been telling Ryan the same thing his whole life.  Perfection isn’t real.  Effort, true and honest and hard effort, is real.

I’ve been very conscious of not using the word “perfect” when it comes to describing anything Ryan does.  I think perfection is an unrealistic expectation, and I remember what it felt like to believe that people expected me to behave perfectly.  In fact, the only time I can remember using the word “perfect” in relation to Ryan was on the night he was born.  As I held this tiny new human being in my arms, and looked at his large, wide-awake, dark eyes and marveled at his very existence, I cried and said, “He’s perfect.”  Over and over again.

But back to my 5th grader’s perfection.

“Why do they say you’re perfect?” I asked.

“They say it’s because I do my work, and I get good grades.  They ask me how I do it, but I didn’t know what to tell them.  I told them I just do it.  Because it has to be done.”

I smiled.  “I think that runs in the family.  We’re really good at figuring out the job that needs to be done, and then trying hard to do that job well,” I said.

“How does it make you feel when they call you perfect?” I asked.

“Good.  Proud,” Ryan told me. 

Our conversation made me think of an essay I wrote several years ago, “Do What You Need to Do” about a lesson my parents taught me about doing “what it takes to get the job done and accomplish your goal.”  That essay was published in the anthology, Lessons From My Parents: 100 Shared Moments that Changed Our Lives.

The lesson continues.

 

An Evolution of Words

 

This week my son, and all the fifth graders at his school, will be watching a video whose content strives to help pre-teens “understand the maturational changes they are beginning to experience and accept these changes as a normal part of growth.”  (That’s what the school note said).  I signed the form, giving my son permission to view this short film at school. 

If you’re not familiar with this, it’s pretty standard protocol at about this age.  Boys and girls watch separate movies, usually with the school nurse in attendance, and also participate in a question/answer session.

It’s one more sign that my sweet boy, while still my sweet boy, is also becoming a bigger boy.  A bigger boy who will soon grow into a young man.

When Ryan was younger, my husband and I never used the anatomically correct words “penis” and “vagina.”  It was “pee-pee”  – serving as both a noun, your body part, as well as the verb, the action you did in the bathroom.  I remember a former co-worker disagreeing with me, chastising me for not teaching Ryan the word “breasts” instead of “boobies.”

But really, cutesy words are just a part of young childhood.  “Paci” for “pacifier,” “piggies” for “toes.”  Often these words were used long after Ryan could pronounce the correct words.

It has made me think of the evolution of words our family has used over the years, some of which Ryan tells me are no longer acceptable.

For example, each week Ryan and I go grocery shopping and before checking out, we always walk by and admire the “beautiful cakes” section.  But, my now-eleven-year-old insists that I refer to it as the “bakery section.”

Here’s another one.  Ryan and I like snacking on chocolate chips (our favorites are at Trader Joe’s).  He used to call them “baby chocolates” which I thought made so much sense based on their size.  I still often refer to them as “baby chocolates,” but now my son reminds me to use their real name, “chocolate chips.”

And just for fun, I’ll share two of my own kid-friendly words I used back during my own childhood.  I called slices of American cheese “square cheese,” based on its shape.  And for no reason that I know of, I used to call Fritos “munch-a-bunch.”

Readers, I’d love to hear from you.  Any words you remember from your childhood?  Or any childhood words you’ve carried with you into adulthood?  Feel free to share them in the comments section!