What I Really Mean When I Say ‘My Leg Kinda Hurts’

It began with a writing prompt. Then some notes. Then several drafts. And resulted in a completed essay published on The Mighty.

 

“ ‘My leg kinda hurts, but it’s okay.’

That’s my standard answer when I’m asked how I’m feeling. I hesitate to say more. I don’t want to tell them (my husband, my son, my parents) how bad my pain is, simply because there’s nothing any of them can do to ease my pain.”

You just read the beginning of my recently published essay “What I Really Mean When I Say ‘My Leg Kinda Hurts’.” 

The reality is more complicated than that.

Click here to be re-directed to The Mighty to read my essay in its entirety.

All I Can Do is Take It Step By Step

I recently finished reading Claire Cook’s The Wildwater Walking Club: Step By Step. It was a fun, easy read. Exactly what I wanted. 

The book is meant to make readers feel good. To transport readers into another world, Noreen’s world, as she walks with Tess and Rosie and navigates life as a newly certified health coach. 

So, why then, were there times I felt sad? 

Why did this feel-good book leave me feeling a bit down at times?

It took me a while to figure it out. 

And then I realized – it’s the walking. (Which is a big part of the book.)

I no longer know the easy joy and pleasure that comes from going on a daily walk.

I do continue to walk each day in my neighborhood, but they’re not always joyful. Not always pleasurable. 

I walk. Certainly not at a quick pace. And not to count my steps. 

But to walk. To exercise. To spend time with my family outdoors. To observe our neighborhood.

But my walking is … I struggle for the right word. Difficult? (Sometimes.) Unpredictable? (Sometimes.) Pain-inducing? (Sometimes.) Exhausting. (Sometimes.)

I don’t always experience more pain after a walk, but sometimes I do.

Sometimes I experience random pain during a walk. A step off a curb that sends a jolt up and down my left leg.

A sudden gripping pain in my calf, that causes me to stop and wait and hope it will pass so I can continue walking. But then the walking has a bit of limping to it. 

If I walk while in pain, it’s still walking. 

And so I keep doing it. 

Because some days are better than others. 

And I walk, step by step, hoping for one of those better-pain days.

 

There Is No Shame

I saw this on the sidewalk recently, before a doctor’s appointment. A thank you to the artist!

“I’ve been living with Undifferentiated Connective Tissue Disease for ten years now, and I’m still learning how to do it. I don’t know if there ever comes a time when you reach the finish line and achieve the “gold star” for figuring it all out. You just keep figuring it out, moment-by-moment, day-by-day, and wake up the next day, and do it all again.”

And so begins my recently published essay, “There Is No Shame in Life With Chronic Illness,” published at The Mighty. (Click here to read the article in its entirety.)

The conclusion of the essay goes like this:

“There is no shame in your body not working/functioning/behaving as it used to. Your body, your life, you – are still a marvel. Never forget that. 

There is no shame in who you are and how you feel.

There is no shame in needing to learn this lesson over and over again.”

It’s an important lesson as we look with longing and hope to the new year.

Wishing you all a peaceful, healthy 2021. 

Temporary Reality, Permanent Fears

Post-surgery. September 2020

What scares you?

Some fear natural disasters like earthquakes or tornados.

Others fear creatures such as snakes or rats. 

Many fear illness and suffering of any kind.

I’m scared of many things. 

Though I have lived in southern California my entire life, I’m terrified of earthquakes.

I’m scared of harm coming to those I love, and being unable to protect them.

And I’m scared of my autoimmune disease and the very real possibility of my body deteriorating.

Back in September, I had a muscle biopsy on my left leg.

And in the weeks after the surgery, some of my worst fears came true.

You can read the full story, “When My Permanent Fears Became My Temporary Reality,” by clicking here and being re-directed to The Mighty.

It’s Not All in the Family

 

Three Generations – my mom, my son, and I. 2015

“It still isn’t easy for me to describe myself as a disabled woman. For a long time I didn’t think a disabled woman sat on the ground pulling out weeds. Or played handball with her son. Or helped her elderly neighbor carry in groceries. But I do all those things. Because being a disabled woman doesn’t look the same for every woman. And it doesn’t look the same for me each day.” 

That paragraph is taken from “It’s Not All in the Family,” a personal essay I wrote that was published in the fall issue of Breath and Shadow. You can read the essay by clicking here.

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.

 

Invisible Forces Can Be Scary

We’re all waiting for the rainbow. Hang in there!

Lately I’ve been thinking about this invisible disability of mine that has changed my world (and by extension, my family’s world) and this coronavirus that has changed the entire world.

My autoimmune disease is invisible. Just by looking at me you couldn’t tell I have a blue handicap parking placard in my car’s glove compartment. 

When I was still visiting doctors and specialists trying to figure out what was going on with my legs (it took over a year to receive a diagnosis), my biggest concern was the possibility I may have passed on this mystery illness to my son. Ryan was two years old when I first became ill. He was described, by some, as a “late walker.” I was experiencing pain and inflammation in my legs. Was there a connection?

Thankfully, my autoimmune disease is mine; it is limited to me. There is no family history, and there is no fear that I have passed this on to my now twelve-year-old son. 

COVID-19 doesn’t work that way. It’s a scary, invisible, powerful force lurking just outside our home. On things we could touch. On air we could breathe. 

The most scary thing to me, in regards to this coronavirus, is that it is possible to be infected and yet be asymptomatic.

My autoimmune disease isn’t fatal. 

But COVID-19 can be.

Wear your masks. Keep your distance. Wash your hands. 

Please, continue to be safe and careful out there.

 

A Few Ideas to Get You Writing

I’m a writer. Yet during this coronavirus shut-down, I don’t find myself writing much about the immediate world around me.

Instead, I’m writing about my life with an invisible disability; writing that will eventually become my memoir-in-essays.

I’m writing in response to calls for submissions.

But the bottom line is, I’m writing.

And I’m also reading.

I recently finished Natalie Goldberg’s Old Friend from Far Away: The Practice of Writing Memoir.

Whether you’re a writer, or someone like my dad who, during this unprecedented time has begun keeping a journal for the first time in his life (he jots down a couple of sentences about each day), here are a few writing prompts from Ms. Goldberg’s book I’d like to share with you this week:

“What have you waited a long time for?”

“What do you no longer have?”

“What I can’t live without – “

“Where did you always want to go but didn’t?”

“Memoir is taking personal experience and turning it inside out. We surrender our most precious understanding, so others can feel what we felt and be enlarged. What is it you love and are willing to give to the page? It’s why we write memoir, not to immortalize but to surrender ourselves.”

 

Connecting With ‘The Pretty One’

The latest book on my “just read” list is Keah Brown’s The Pretty One. 

I first saw the book at Target and was immediately intrigued by the author’s smile and subtitle – “On Life, Pop Culture, Disability, and Other Reasons To Fall In Love With Me.”

Keah Brown and I are different.

She is in her twenties; I am in my forties.

She is black; I am white.

Her disability is visible; mine is invisible.

However, her book proves a very common theme – the more specific you can get in your writing, the more you’ll find it relates to so many different people. You don’t have to be like Keah Brown to read this book. In fact, maybe it’s better if you’re not. Because then you’re forced to go along with Ms. Brown for this ride; to get a sense of what it is like when most of the movies you enjoy watching don’t feature a character that looks like you. (Although, like Ms. Brown and her sister, many of my friends did refer to my younger sister as the “pretty one.”)

Here are a few takeaways I’d like to share with you this week:

“The loss of control is where the true manifestation of my anxiety begins: the fact that you’re put under and you have no idea what is being done to your body, but you lead with the hope that it is the right thing, as strangers cut into your body in an effort to make it better. The reality is that I frequently cut myself open in the figurative sense when I share bits of myself with readers and audiences, but the idea of being cut open in real life will never not worry me despite the many experiences I have had.” 

“The pain is still there when it wants to be. The pain is one of the factors of disability that I cannot control. All I can do is try my best to take back the narrative about what living with disabilities is like.”  

“I like that my journey has not been easy, because then I would not have my stories to tell. Getting to that place of thought was hard, but so much of my life makes sense in these terms.”

“Imagine if we gave ourselves the same sort of love, attention, and understanding we give the people we love. If we allowed our vulnerability to fuel us to be better people, to say and do more, to feel in and navigate a world that champions tears as much as it does strength, to see tears and crying as signs of strength, even.” 

“I have always believed it is imperative that we learn from the experiences and histories of other people to better understand each other and ourselves.”