More Than Just a Meal

In this photo, Ryan is 9 years old.

 

Readers, do you have a favorite food?

I don’t have a favorite food, but I do have favorite food-related memories.

  Being a junior high school student and making tostadas for a family dinner as part of an assignment for my seventh grade health class.  It was the first time I had cooked dinner, and I was proud of myself for coming up with a meal that included all the food groups.

– My husband and I eating our first meal in our first apartment:  a Burger King Whopper and fries.

– Celebrating my mom’s birthday with a special breakfast of hot chocolate and chocolate croissants, not knowing at the time I’d be giving birth to my son later that night.

For me, food isn’t just a matter of feeding my body; it’s about the who, the where, and the when.  Which is why I’m unwilling to drastically change my diet in hopes of decreasing the effects of my autoimmune disease.

Last week, The Mighty published my personal essay, “Why I’m Not Changing My Diet as Someone with Autoimmune Disease.” You can click here to read it.

My essay was also featured on Yahoo’s home page as well!

And if you do have a favorite food or food-related memory, I’d love to read about it in the comments section.

 

This Year’s Plan

My personal essays appear in these anthologies.

Last year, I wrote a blog post stating my intention to make my writing my year’s focus.  (Click here if you missed it.  And an update:  the anthology I mentioned in last year’s post has been delayed but hopefully will be published later this year). 

So, a week into the new year, I thought it only fitting to reflect on 2018 and see how I did.  

Did I focus on my writing?  Yes, most of the time.  When my son is home during breaks from school (we just finished up a three-week winter break), my writing time is drastically reduced.  

Yet, I’m proud to say I did a lot of writing last year, including: 

A blog post a week.  And I’m especially proud of re-focusing this blog and concentrating my posts on one of the 3 most important B’s in my life:  boys (or children in general, based on my teaching experiences and raising my son), books (a writer must also be a reader), and bodies (specifically living with an autoimmune disease).

I continued to be a regular contributor for MomsLA.com, often writing two posts per week.

I completed a course in the UCLA Extension Writers’ Program.  

I wrote multiple personal essays, and I published a dozen of them on sites such as TheMighty.com, parents.com, RoleReboot.org, Breath and Shadow, and mother.ly.  

So what’s in store for this year?  More of the same.  A focus on my writing, specifically my essays describing my experiences living with an invisible disability.  

On my bookcase, there are several anthologies that don’t have my name on the cover, but do have my name inside – on a contributing essay.  And like I’ve told my son, one day, there will be a book on our shelf where my name is on the cover.  That’s what I’m working on this year.

 

My Backbone

Last week, I wrote about my similarities to a frog and specifically this line:
“… and when the going gets tough, you show your backbone.”

So this week I’ll write about another Backbone.

I recently completed reading Karen Duffy’s memoir, Backbone – Living With Chronic Pain Without Turning Into One.  There aren’t many books out there by and about people living with chronic medical conditions (though I’m working on my own) so I was instantly intrigued to discover this one.

Generally, I read to learn, to gather information, or to be entertained.  With Backbone, I read to find comfort and solace that someone else out there “gets it.”

This week, I’d like to share with you some of the take-aways, the things that stood out for me while I read:

“I’ve learned a lot from my illness.  In some ways, it has been a gift.  It’s not a gift I would have picked out for myself, but when things were easy, I didn’t realize how tough I was.  When you live with a chronic illness, you get comfortable with being uncomfortable.”

“Millions of us, people with cancer, lupus, MS, Parkinson’s, sarcoidosis, fibromyalgia, Crohn’s, cystic fibrosis, and many other diseases will live for years with invisible but persistent illness.  Whether it’s the miracle of modern medicine or the luck of the draw, we are fated to have to find a way to live for decades with an incurable condition.”

“The ability to walk without pain is a gift that we don’t have anymore.  Being able to walk with pain and not give up is a superpower.”

“I would not wish a life with chronic pain on my worst enemy.  A painful life-altering event is one of the top fears for most of the population.  We who are chronically ill deal with what most people fear every single day.  We know our complaints are not moral weaknesses.  We find resilience, we adapt, and we figure out a new way to live.  We have guts.”

 

I’m a Frog

After answering the questions, it was determined that I am a frog.

Let me back up and explain that first sentence.

Last week, my dad, son, and I went to the Annenberg Space for Photography to see the National Geographic Photo Ark exhibition.  (If you are in the Los Angeles area, I highly recommend it.  The exhibit is on display until January 13th, 2019.  Joel Sartore’s photographs are astounding, and his mission is so inspiring!)

One part of the exhibit involved an interactive activity where visitors use a touch-screen to answer simple questions.  After making it known that I was an early riser and not a night owl, preferred a beach area to a snowy area, and would rather play with stuffed animals than video games, (there were other questions too), the determination was made that my Photo Ark animal was the Reinwardti’s Frog.

I’m not sure how I feel about being a frog.  (My son was also a frog; my dad was a toad).  

I think of frogs as slimy.  As bug-eating.  As noisy.  As the dead creature I had to dissect back in seventh grade biology class.

Though, when I read the paragraph explaining the “similarities” my animal and I shared, one line did stand out.  “… and when the going gets tough, you show your backbone.”

You don’t often think of frogs and their backbones.  And maybe people don’t always think of me as being tough either.  But if I’ve learned (and am still learning) anything during these years with a chronic medical condition, it’s that I am indeed tough.

 

The Best Kind of Gift

My ten-and-a-half year old son received an early Christmas gift last week from a friend of the family.  Well, she’s not just a friend of the family.  Several years ago, she and I taught at the same school.  Now she teaches at Ryan’s elementary school, and two years ago, she was his third-grade teacher.

The gift was a surprise to us both.  

It was wrapped, so as Ryan looked at it and felt it, he first thought it was an iPad.  It would have been an incredibly generous, though unlikely, gift.  But in his mind it was the right size.

It wasn’t an iPad.  It was a book.  A hardcover book.  A hardcover book signed by the author.  A hardcover book signed by the author and inscribed to Ryan.

And Ryan loves it.  

Ryan loves it so much he whooped and hollered around the house.  He proudly showed it off. 

I don’t think it’s a book Ryan would have picked up on his own had we just been browsing at our local Barnes and Noble or public library.  But because his teacher selected this book for him, because his teacher asked the author to sign the book for Ryan, Ryan is reading it. 

It’s a beautiful testament to the power of books and putting a book in a child’s hands.

 

My Reading Homework

I have just completed “Creative Nonfiction III,” a ten-week writing course offered through UCLA Extension.

And, I didn’t complete all my homework.

In addition to workshopping essays every other week, each student was supposed to read a book a week.  There was no prescribed reading list.  We were simply to read one book each week of class.  And I didn’t.

When I’ve taken this course in prior years, I diligently completed all my reading homework.  I calculated the minimum number of pages I needed to read each day to make sure the book would be finished on time.  It was stressful.  I’d power-read, just trying to get the book finished without truly enjoying what I was reading or paying attention to the author’s tone or the book’s structure.

So with this class, I decided I wasn’t going to do that again.  I would try to read a book a week, but if it didn’t happen, so be it.  There is no negative consequence.  I wasn’t taking this class for a grade.  I was taking it for me.  I pushed myself during this class, writing in a couple of new styles, writing on different topics.  And I slowed myself down to enjoy what I was reading.

I may not have finished ten books in ten weeks, but overall, I did pretty well.

Since class started in October, I have read:

  • Close Encounters of the Third-Grade Kind: Thoughts on Teacherhood by Phillip Done 
  • The Art of Slow Writing by Louise DeSalvo   
  • When Breath Becomes Air by Paul Kalanithi  
  • Tell Me More – Stories About the 12 Hardest Things I’m Learning to Say by Kelly Corrigan 
  • Writing Is My Drink by Theo Pauline Nestor
  • Hourglass: Time, Memory, Marriage by Dani Shapiro

And I’m currently reading. Wherever You Are: A Memoir of Love, Marriage, and Brain Injury by Cynthia Lim (an author I first met through a Writers Retreat and who has also taken classes through UCLA Extension).

Readers, I’d love to hear about any books you’ve read in the last ten weeks.  Feel free to share in the comments section!

Thoughts On Marriage

Hourglass – Time, Memory, Marriage by Dani Shapiro is the latest book in my “just finished” pile.  Ms. Shapiro’s memoir is an intimate look at her eighteen-year marriage.  She writes of honeymoon memories, family struggles, financial worries.  

Basically, she writes about  her marriage.  Not the wedding; because marriage isn’t the wedding; it’s everything that comes after.

From Ms. Shapiro’s book:

“How do you suppose time works?  A slippery succession of long hours adding up to ever-shorter days and years that disappear like falling dominoes?”

“A shared vocabulary – like a soundtrack to our lives – so familiar that we hardly even notice which of us is speaking.”

“I cannot bring myself to even idly wish any of it – not even the most painful parts – away.  Eighteen years.  Change even one moment, and the whole thing unravels.  The narrative thread doesn’t stretch in a line from end to end, but rather, spools and unspools, loops around and returns again and again to the same spot.”

Eighteen years for her and her husband.

Nineteen years for me and my husband.

Forty-three years for my parents.

 

Mommy a.k.a. Short-Order Cook

What does family dinner look like in your home?

Do you sit at a table or in front of the television?  Do you all eat the same meal?

My idea of a successful family dinner has changed since becoming a parent.  And it’s my son who has taught me that what is on each of our plates isn’t nearly as important as what is happening at the table during our family dinner time.

Click here to be re-directed to parents.com to read my personal essay, “Choosing Peace over Peas.”  My essay was written in response to a Parents-sponsored essay contest, with a 300-word limit on the theme, “”The Parent I Thought I’d Be.”  I was a finalist and won a $100 gift card!

 

The 5 Hardest Things I’m Learning To Say

I recently completed reading Kelly Corrigan’s memoir, Tell Me More – Stories About the 12 Hardest Things I’m Learning to Say.  The book has an interesting structure; the author uses 12 different phrases as springboards for her personal stories. 

Among Ms. Corrigan’s “12 Hardest Things” are the phrases “I Don’t Know,” “I Was Wrong,” and “Tell Me More.”

It got me thinking, and inspired by the book, I’ve come up with a list of the 5 Hardest Things I’m Learning to Say.

1.  I Need Help.  Not an easy one for me, at all.  I’m used to being in charge, used to being independent, used to being able to handle everything and anything that comes my way.

2.  I Can’t Right Now.  It’s not easy for me to back out of plans or to tell my son I don’t have the energy for a bike ride.

3.  I Need to Rest.  In my head, resting (and it’s extreme – napping) means there’s really something wrong with me.  Anytime I nap, I am sick.  Really sick.  Throwing up, feverish sick.  I am like the Energizer Bunny: I just keep going.

4.  I’m Scared.  I do try to keep it all together, keep my fears in check, not let my emotions blur my logic.  But it’s hard.  Each year seems to bring with it more tests (many of which I’ve never heard of before until it’s time for me to schedule one).  And each time, I’m afraid of what the test will reveal.

5.  No.  A plain and simple reply to a multitude of requests that I don’t want to do, or don’t feel like doing, but do anyway.  

 

And you, dear readers?  What are you learning to say?  Feel free to share in the comments.

Under Self-Attack

 

Time spent by the ocean is always good for my soul.

I have a question for you, dear readers.  How would you define “self-care?”  

For some, it means a bit of pampering, such as taking the time to get a pedicure or massage.  For others, it means doing something just for you, something that makes you feel good, whether it’s sitting down with a cup of hot chocolate and a good book or going for a walk.

But what about people like me?  People who struggle with invisible disabilities?  People for whom “self care” means something entirely different?

Click here to be redirected to The Mighty to read my recently published personal essay, “With Autoimmune Disease, There Are More ‘Self-’ Practices Than Just Self-Care.”