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.”

 

Just Because You Can’t See It, Doesn’t Make It Less Real

You don’t see the wind. But you know it’s there when you hear the wind chime.

“The battles that count aren’t the ones for gold medals. 

The struggles within yourself – 

the invisible, inevitable battles inside all of us – 

that’s where it’s at.”

– Jesse Owens

I had an experience that made me think of this quote. 

Many times over the years I’ve been told I don’t look sick.

And I don’t feel sick. 

I think of sick as throwing up, coughing, fever. I’m not sick. (Thankfully).

I am uncomfortable. In pain. 

And the worst part is when the pain just randomly hits out of nowhere. Sometimes the pain makes sense. I spend 30 minutes pulling weeds and gardening, my legs hurt. My son and I go shopping at Target (such a huge store), and I’m hurting.

But a couple of weeks ago, my husband and I went out to lunch. I was ok. We were walking to our car in the adjoining parking lot, and all of a sudden I clutched my husband’s hand. An intense pain gripped my left thigh. We found a ledge to sit down on. And while I tried to take deep breaths, I quietly cried behind my sunglasses.

I cried because of the pain.

And, I cried because I was out with my husband, celebrating his birthday, and I couldn’t even walk to our car. 

The pain subsided enough for me to get up and keep walking. But for the rest of the day my thigh hurt. The kind of lingering hurt you get after you’ve clumsily walked into the corner of a table or something. 

Except I hadn’t walked into anything. I had simply walked.

And some days, it’s harder than others.

Why I Feel Guilty About My Autoimmune Disease

I live with an invisible disability. A chronic medical condition causing chronic pain. An autoimmune disease called Undifferentiated Connective Tissue Disease. My rheumatologist described it as having overlapping symptoms of lupus, myositis, and rheumatoid arthritis.

On any given day, at any given time, I feel exhausted. Depressed. Angry. Confused. Vulnerable. Fatigued. Pissed. Worn-down. Less-than. Weak.

The emotions fluctuate on my day – my activity, my energy, my pain. 

But there is one underlying emotion that’s always there. One emotion that serves as the shaky foundation for all the rest. 

 

That is the beginning of my most recently published personal essay. Click here to be-directed to The Mighty to read “What It’s Like To Feel Constant Guilt With an Invisible Disability.”

Hoping For Courage

What is going on inside these legs?

Without going into details, I have a medical test/procedure scheduled later this week. 

Here’s what you should know:

I’m living with my autoimmune disease for almost 10 years now. In that time, I’ve already experienced this particular test twice. Each time the results were inconclusive. 

The test is being done a third time mainly for comparison purposes. It’s been a few years since the last test, and doctors are interested in seeing if any changes show up this time around. There are some concerns that my left leg may be worsening. If so, this test may give some clues about what’s going on in my leg.

Aside from the fact that I don’t want to have this test in the first place, I’m not sure what to think about this test and its possible results.

Here’s the dilemma:

Do I want the test to reveal something? To pinpoint a reason why my leg pain is increasing and my leg strength is decreasing? Would this perhaps give doctors a lead, a clue, in terms of more effective treatment? 

But what if my leg does test worse? What would that mean? 

Or, do I want this test to be like every other test I take – indeterminate? Within the boundaries of normal-enough? 

Which is reassuring I guess, but on the other hand it also means it provides doctors (and me) no answers, no explanations, no reasons why I feel the way I feel.

In reality the only thing I can realistically hope for is courage. Courage during the test. And courage after the test. In whatever form I may need it.

 

It’s Complicated – Working with an Autoimmune Disease

When I went to my local library and typed in “autoimmune disease” in the keyword search (I miss card catalogs, by the way), a dozen books were listed.

12 books. And one of them had to do with pet health.

That’s how I discovered Women, Work, and Autoimmune Disease written by Rosalind Joffe and Joan Friedlander.

Both authors live with autoimmune diseases. They’ve been there – dealing with the uncertainties that come with living with an autoimmune disease, the unpredictability, the sheer will it sometimes takes just to get through the day.

But, there were many times I came close to not finishing the book. 

It was written in an overly simplistic, just-keep-going and make-some-changes kind of way. And that doesn’t work for everyone. 

For my readers who don’t know, I was an elementary school teacher, before retiring due to a disability. I taught for 12 years. I had planned on teaching for many more. But teaching doesn’t provide many opportunities for flexible work hours or workplace modifications (topics discussed in this book). 

However, even though I didn’t particularly like this book, I did find passages that caused me to pause for a moment and think, “Exactly.” 

This week I’d like to share these passages with you.

“Autoimmune diseases are fickle, and what might adversely impact your symptoms one day might not affect you the next.”

“It takes determination to look at deceasing possibilities and refuse to crumble. It takes courage to face the loss of what you could do and see opportunity in its place.” 

“Grief is an emotion that is often overlooked when talking about chronic illness, but it is critical to any discussion about living with AD – with translates into learning to live with loss. That’s not to say that there aren’t gains here, too. But loss is inevitable, even at the basic level of not being able to do or feel as you once did.”

“The truth is that no one knows what’s around the corner, but living with chronic illness means that unpredictable health is more likely.”

“On the days when you feel your worst, you can look fine. You don’t sport the red nose of a cold or the cast of a broken wrist to support your case. Because you look the same as you do on your good days, you wonder if people understand the symptoms that they cannot see.”

“It’s undeniably true: your illness has changed the way you view your world and your life. It has quite literally transformed your physical capabilities – at least for the short term – and has most likely altered your perception of yourself.”

 

Giving Thanks to These 5

Each Wednesday, I publish a blog post on one of three subjects: books, boys, or bodies (specifically living with an invisible disability).

Beyond the post you read, though, there are the behind-the-scenes people that make this blog and this website possible.

Today, the day before Thanksgiving, I give thanks to:

  1. My son.  My eleven-year-old son is my greatest inspiration. The questions he asks and the ideas he shares have served as the inspiration for many of my blog posts and personal essays. 
  2. My husband.  It was my husband who first encouraged me to start my own blog. It was right after we had seen the film Julie and Julia. It was the nudge I needed to start to prioritize my writing and my writing time. And, he often serves as my photographer for my blog posts.
  3. My mom.  My mom has always been my proofreader. Since I can first remember writing school reports back in fourth grade, it’s been my mom who checks my spelling, my punctuation, my grammar, my lucidness. Though I may be in my forties, and not a fourth-grader any more, I still look to my mom to proofread each blog post before it’s published. 
  4. My dad.  Over the years, it’s been my dad who has shared his extra office supplies with me, which I gratefully accept. Every writer needs a stash of highlighters, binders, and printer paper. 
  5. My readers.  I am proud to say I have readers around the world. People I know and people I don’t know. Some of you comment on the site, some of you send me personal emails commenting on something you read. A few of my former students have found me via this website and sent me emails recounting their memories in my classroom. Those emails make my heart swell. 

My first blog started all those years ago, as a way to take my writing seriously. A self-imposed deadline. Since then, it’s become so much more than that. 

I’m not just writing. I’m being read. 

And for that, I am very thankful.