RIP RBG

Back in May 2019, I wrote the post below.

Now, in September 2020, I must add:

Thank you.

Thank you, Ruth Bader Ginsburg. 

Thank you for what you have done. 

Thank you for serving as an inspiration and a role model.

May we make you proud.

 

(Written and first published on this blog in May 2019)

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 to grow. 

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.”

A Joyful Read

One of my favorite fiction authors is Katherine Center. I eagerly await her books. But then a funny thing happens. Once I buy her newest book, I hesitate to start reading it. Because once I start reading, it’s hard to stop. And if I read too quickly, I’ll finish the book too quickly. 

Ms. Center’s latest novel, What You Wish For,  was no different. It made me smile. It made me laugh. It made me cry. It made me bite my lip. And it made me look up George Michael’s “Freedom! ‘90,” and play the sample on the iTunes store. (page 234, if you’re curious)

This week, allow me to share some of my favorite passages with you:

“Joy is an antidote to fear. To anger. To boredom. To sorrow.”
“But you just can’t decide to feel joyful.”
“True. But you can decide to do something joyful. You can hug somebody. Or crank up the radio. Or watch a funny movie. Or tickle somebody. Or lip-synch your favorite song. Or buy the person behind you at Starbucks a coffee. Or wear a flower hat to work.”

 

You really have to read the description of the school library (page 107) to become fully enchanted, but meanwhile I’ll share this bit with you:

“I wanted to make sure that if kids felt an impulse at any moment to pop by the library, there’d be nothing to stop them. It was the best way I knew to turn them into readers: to catch those little sparks when they happened and turn them into flames.”

 

“I’m not happy because it comes easily to me. I bite and scratch and claw my way toward happiness every day.”
“It’s a choice. A choice to value the good things that matter. A choice to rise above everything that could pull you down. A choice to look misery right in the eyes … and then give it the finger.”
“It’s a deliberate kind of joy. It’s a conscious kind of joy. It’s joy on purpose.”
“I’m telling you. I know all about darkness. That’s why I am so hell-bent, every damn day, on looking for the light.”

“Life doesn’t ever give you what you want just the way you want it. Life doesn’t ever make things easy. How dare you demand that happiness should be yours without any sacrifice – without any courage? What an incredibly spoiled idea – that anything should come easy? Love makes you better because it’s hard. Taking risks makes you better because it’s terrifying. That’s how it works. You’ll never get anything that matters without earning it. And even what you get, you won’t get to keep. Joy is fleeting. Nothing lasts. That’s exactly what courage is. Knowing all that going in – and going in anyway.” 

Pain Isn’t a Once-a-Year Topic for Me

 

Sometimes it’s hard to look at my legs with gratitude for all they can still do.

 

September is Pain Awareness Month, a “time when various organizations work to raise public awareness of issues in the area of pain and pain management.” 

Have you ever seen that 1-10 pain scale? The one doctors show you, with a range of facial expressions? 

I don’t like that scale. And I don’t like being asked to rate my pain. 

I remember a visit to a pain management doctor. During the intake, the nurse asked me to rate my pain, right then in that moment. I refused. 

I’m usually a very compliant patient, obedient and direction-following.

But, let’s face it. After 10 years of living with my autoimmune disease, I’ve gotten really good at pushing through the pain. I have to. As a result, my pain scale most likely doesn’t look the same as yours. What I now consider a 6, my husband would probably classify as a 10. 

Here’s what I can tell you about my pain. It fluctuates. And not just day-to-day. Sometimes hour-to-hour, even minute-to-minute.

In the interest of pain awareness, I thought I’d share just a bit of what my pain is like.

  Sometimes, my left calf is tight. That tight feeling you get before, during, and after a muscle cramp. Except my tightness lingers. For hours.

  Sometimes I don’t have pain. I have a general heaviness. My now twelve-year-old son and I used to play “squish” when he was younger. It was a wrestling-type game that happened either on the floor or on my bed. We’d tickle, but generally he would end up “squishing” me – pinning me with his body. That’s how I feel. Like I’m walking around, cooking dinner, watering my plants, and I have an invisible child strapped across my legs, weighing me down.

  Sometimes I have a throbbing pain. You know that pain you get when you’ve bumped into the sharp corner of a table? You can’t see a bruise, but the area is sore and sensitive and just hurts.

  Sometimes I just hurt. Like I’ve been pricked with needles (and I have been, so I know what it feels like). My calf is sensitive, and I have to roll up my pants so the fabric doesn’t touch my skin.

  Sometimes the pain is rocking-back-and-forth, pulling-at-my-hair kind of pain. Sometimes it just randomly hits. Sometimes I know it’s coming. My calf muscle may begin twitching. On certain occasions, I can even see it moving. It makes me think of when I was pregnant, and my husband and I would joyously watch my stomach move when our son would turn or stretch. There is nothing joyous about this though.

  Sometimes my leg feels twisted somehow. As if someone took my muscle and twisted it, the way you wring out a washcloth. And simple things, like bending to pull something off the bottom shelf of the fridge, or bending down to pick up the mail off the floor, or standing on my toes to reach the colander from the shelf in the kitchen, aren’t so simple for me to do.

And I could go on. 

I don’t want pity. Don’t feel sorry for me. 

Feel compassion and kindness and patience for everyone you encounter. Because you never really know someone else’s pain.

 

The Article I Wish I’d Read After My UCTD Diagnosis

The first thing most people do when they have any sort of medical-related question is head to Google.

We Google symptoms and try to self-diagnosis. We search for causes and treatments.

Then you get a diagnosis and head back to Google. What does the diagnosis mean? How are others living with this particular illness? What adjustments are needed? What does the day-to-day look like?

That’s what I did, back in November 2011, when I received my autoimmune disease diagnosis. 

Except Google didn’t have a lot of resources available. My autoimmune condition is rare, and there wasn’t a whole lot of available information out there.

Click here to be re-directed to TheMighty.com to read my recently published essay, “The Article I Wish I’d Read After My Undifferentiated Connective Tissue Disease Diagnosis.”

 

Family Field Trips Re-Imagined

Will Rogers Park – one of our summer “field trips”

Each summer since 2007, our family visits the Aquarium of the Pacific. (In fact, this yearly tradition began the day I took my home pregnancy test and learned I was expecting!)

“But this hasn’t been a typical summer. We had to alter the ‘what’ and ‘where’ of our days, yet I’m proud to say, we’re still acting as tourists in our city. We’re just exploring, observing, and visiting outdoor spaces this time.”

The paragraph above is from my recently published personal essay, “Our End-of-Summer L.A. Field Trips” which was recently published at L.A. Parent. You can read it here.

And no, we didn’t visit the Aquarium this year. (Though the Aquarium does now offer outdoor admission.)

 

Grateful for Ordinary Days

These days, it’s all about perspective. 

Looking at things in a “glass-half-full” mindset.

We’re not “stuck at home.” 

We’re “safe at home.”

Which brings me to Katrina Kenison’s memoir The Gift of an Ordinary Day.

Because as much as I’d like things to be different, there is also much to celebrate and rejoice in these “ordinary days.” I don’t take for granted our family’s good fortune and good health.

This week, I’d like to share with you some of my favorite takeaways from Ms. Kenison’s memoir:

“Immersed in the physical and emotional realm of parenthood, we develop reserves of patience, imagination, and fortitude we never dreamed possible. At times, the hard work of being a mother seems in itself a spiritual practice, an opportunity for growth and self-exploration in an extraordinarily intimate world, a world in which hands are for holding, bodies for snuggling, laps for sitting.”

“How in fact life is not all about planning and shaping, but about not knowing, and being okay with that. It’s about learning to take the moment that comes and make the best of it, without any idea of what’s going to happen next.”

“Learning well doesn’t always mean scoring high. It also means acquiring the tools necessary to take on the most challenging work of all – becoming the person you are meant to be.”

“It may well be that success lies as much in our ability to behold the world before us in gratitude and wonder as it does in owning things and doing things. And it may be, too, that happiness really is a state of mind we choose for ourselves, a way of being that we cultivate from one moment to the next, rather than the result of realizing our ambitions or acquiring whatever it is we think we most desire.”

“That we can’t always choose what happens to us, can’t always pick the hand we’re dealt – but we can choose our response and decide how to play the hand we have.”

“None of this was ever part of the plan, but life so rarely unfolds according to plan. Real life is just where we are, in this moment, and the only mistake we’ve made so far has been not to pause long enough or often enough to realize that even this odd in-between time is precious, fleeting, and worthy of our attention.”

“That there is no such thing as a charmed life, not for any of us, no matter where we live or how mindfully we attend to the tasks at hand. But there are charmed moments, all the time, in every life and in every day, if we are only awake enough to appreciate them.”

“Ordinary days. The days in which nothing momentous happens, no great victories are won, no huge disappointments suffered, no milestones achieved. Most of our lives are made up of days just like this – if we’re lucky, that is, and the seas of fate are calm. Days that are not particularly memorable, but that are nonetheless the only days we have.”

 

A Bit of Perfection

My favorite part of last week was a completely unplanned activity.

A spontaneous way for my son and I to spend a part of our afternoon.

My twelve-year-old son, a week away from entering the 7th grade, allowed me to paint his hands and feet.

The last time we made his hand and footprints was two years ago. I’ve asked on-and-off during these past two years, and Ryan usually declines.

But this particular afternoon he agreed.

And I was delighted.

I’ve been painting Ryan’s hands and feet since he was a baby. I used to press his little palm into a large ink pad and that’s how he would “sign” greeting cards for family members. 

And don’t forget, I’m a former teacher. I loved painting my students’ hands for all sorts of fun activities. Hands make great leaves for flowers, reindeer antlers, and turkeys! (My first year of teaching, another kindergarten teacher shared with me a valuable tip – add some dish soap to the paint. It makes it so much easier for kids to clean their hands and for the paint to come out of any clothes it may accidentally get on.)

Others might see our painting time as a rather simple activity, but it felt magical.

I was in awe. 

I marveled at the size of Ryan’s hands and feet. The way the human body just knows how to do things – like grow. Bones and skin and muscles. It’s amazing.

The world outside our home is scary right now. But for those precious moments when we sat on the floor making handprints and footprints, everything felt perfect. 

Why Do You Enjoy Reading?

A born reader! Ryan at 18 months old!

Recently, while on a walk with my twelve-year-old son, I asked Ryan what he would say if someone asked him why he enjoys reading.

(By the way, click here to read a recently published essay about our walks called “Yes, Walking Is Exercise.”)

Ryan took a second and then answered, “Because it’s fun. And it’s interesting.”

He continued, “It depends what I’m reading. Like Diary of a Wimpy Kid is fun. And biographies are interesting. I learn new things.”

I smiled. 

“Great answer,” I proudly replied.

I share this story with you in honor of National Book Lovers Day coming up on Sunday, August 9th.

Keep reading. And wearing those masks!

 

Writing As My Way of Teaching

I didn’t start writing as a way to “heal.” 

In fact, my earliest memory of myself as a writer goes back to second grade. I had written a story and showed it to my teacher, Mrs. Jones. In all fairness, in my memory, my story wasn’t entirely my own, but was “borrowed” from something I had seen on Sesame Street. 

In any event, Mrs. Jones made me a “book” with yellow construction paper for the front and back covers and the “good paper” inside – the white paper with blue lines that was always reserved for our final drafts. She told me to write my stories down in my book. 

I don’t know what happened to that book, but I do know that I’ve been writing ever since.

I got lucky. My very first publication was in the Los Angeles Times. 

After that, most of my published personal essays were inspired by my teaching career and my interactions with my students. (You can check out a list of my published work here.)

But that was before 2010. For the past ten years, I have written more and more about my life with an autoimmune disease. In fact, I am working on a memoir-in-essays as a mother, wife, and former teacher living with this invisible disability.

And that’s why I recently read Louise DeSalvo’s Writing as a Way of Healing – How Telling Our Stories Transforms Our Lives.

While I don’t know if writing is “transforming” my life, I do believe writing provides me with a different opportunity to teach.

This week, I’d like to share a few of the passages that I marked with my pinkish/purplish highlighter.

“… writing that springs from intensely personal motives can be useful to others. For loss is a universal human experience, something we all must learn to deal with.”

“Through reading, our imaginative faculties are nourished, enriched, expanded. This is why, for writers and would-be writers, reading is not a luxury but a necessity.”

“One reason, then, to write as we face these critical junctures in our lives is that illness and disability necessitate that we think differently about ourselves, about everything. We can write a new story for ourselves, to discover who we are now – what we’re feeling and thinking and what we desire. We can learn, too, what our bodies are like now, and we can imagine what will become of us.”

“Writing gives us back the voices we seem to lose when our bodies become ill or disabled. We want to speak for ourselves and our particular experience of illness and disability rather than have someone else speak for us. Writing helps us assert our individuality, our authority, our own particular style. All are seriously compromised by medical treatment and hospitalizations …”

“For illness often confers a wisdom about how to make ordinary life deeply and transcendentally meaningful.” 

 

10 Years (and Counting) of Chronic Contradictions

This month is a 10th anniversary for me.

An anniversary that isn’t cause for celebration.

But is cause for acknowledgement and reflection.

10 years ago this month, I woke up on a Sunday morning and couldn’t stand. For a few days, my left calf had felt sore and tight – the leftover feeling you get after a muscle cramp.

But on this particular Sunday morning, my calf wasn’t just sore and tight. It was red. Elmo-red. And swollen. And I couldn’t stand up. 

I knew something was wrong when the emergency room nurse admitted me as quickly as she did.

My prior emergency room experience was more than five years earlier when I cut the palm of my left hand while trying to cut open an avocado. I remember sitting in the waiting area that evening, my arm raised, my hand wrapped in dishtowels waiting to see a doctor. Waiting for stitches. 

This time I was immediately admitted.

I knew that wasn’t a good sign.

But never could I have imagined that my left calf’s “issues” weren’t a temporary problem. Never could I have imagined that Sunday in July was just the beginning. 

And never could I have imagined that my life would forever be changed.

“Even though my disease has been a part of my life for several years now, I don’t feel as if I’ve reached a level of total acceptance and understanding. I am more and more convinced that living with a chronic illness is synonymous with living a life full of contradictions.” 

That passage is from my essay, “Chronic Contradictions,” which is included in the recently published anthology, The Things We Don’t Say – An Anthology of Chronic Illness Truths.

Though I wrote those words about three years ago, they’re just as true today.