The Octopus in My Life

I’m pleased to share The Mighty has published one of my personal essays, “How My Autoimmune Disease Is Like an Octopus.” 

I wrote this piece in response to one of The Mighty’s monthly writing prompts. “What’s something related to your health condition you had to learn the ‘hard way’?”

Here’s an excerpt from my essay:

“No one told me this would be all-encompassing. That having an autoimmune disease was like having an octopus in my life, tentacles stretching out and touching one area of my life after another.” 

You can click here to read the essay in its entirety. 

Trying To Be a “Bravey”

A couple of confessions.

First, I had no knowledge of Alexi Pappas until recently.

Second, I don’t remember how I first learned about Alexi Pappas and her memoir Bravey: Chasing Dreams, Befriending Pain, and Other Big Ideas

But I’m so glad I did.

I borrowed a copy from the library, but it’s full of so many sticky notes that I had to order my own copy. And then not only will my copy have sticky notes, but I’ll go ahead and highlight passages. 

Alexi and I are very different. She’s an Olympian, for crying out loud. (And a filmmaker, an actress, and a writer.) Yet, her words resonated with me and touched me so strongly. 

This week I’d like to share with you some of my favorite passages.

“It was the first time I used the word bravey, and it stuck. It became a label for a mini-movement, a self-identifier for those who are willing to chase their dreams even though it can be intimidating and scary. It celebrates the choice to pursue a goal and even relishes the pain that comes with effort. There is nobility to it; it’s something to be celebrated.” 

“Imagination, at the very least, brings us joy; at the very most, it empowers us to suspend disbelief and chase the impossible. Imagining things into existence is a superpower.”

“Asking for help is a superpower anyone can have but only some people use. It is brave to ask for help.”

“You have to believe you are deserving of good surprises in life. You set yourself up for it. You walk with your eyes open enough to catch the eye of the person who will invite you in. Maybe they won’t but maybe they will. Luck can be cultivated.”

Supposed to was another phrase I couldn’t let go of — I was supposed to do this and I was supposed to do that — so I kept doing things that helped me appear normal to the outside world, but none of which would help me heal myself.” 

“That’s what being a Bravey is — you are making a conscious choice to tell yourself what you’d like to be until it becomes part of you. You choose to replace “can’t” with “maybe” by acknowledging your feelings but focusing on your actions. Your actions encompass everything from what you do with your time, to who you surround yourself with, to the words you feed your mind. To know you can do this for yourself is the most powerful thing in the world.” 

“You have to take care of yourself first. You are your own most precious resource. Everything you are in this world hinges on you facing yourself before you face the world.” 

Why Invisibility Is Not a Superpower for Me

(I think teachers are superheroes. This is me, in my fifth grade classroom, on my last day of teaching. March 2013)

Today, April 28th, is National Superhero Day.

When you hear the word “superhero” you usually think of either fictional characters (Wonder Woman, Spiderman) or real-life individuals (firefighters, nurses, doctors).

We believe our superheroes (both real and fictional) have superpowers. 

Along those lines, many people consider invisibility as a coveted superpower.

But I don’t.

In fact, there are days when I believe things might be easier for me if my “invisible” disability was a bit more visible.

Two years ago The Mighty published my personal essay “Why ‘Invisibility’ Is Not a Superpower When It Comes to Illness.” 

Today, on National Superhero Day, I’d like to share it with you along with a reminder from my essay:

“The truth is, there is no age or way to ‘look’ disabled. So remember, we all deserve kindness and patience, regardless of how healthy we may look on the outside.”

Click here to read my essay in its entirety.

Wendy, Who Doesn’t Fit in One Box

This past weekend I re-read a book that has sat on my shelf for a while. A book I haven’t picked up in quite some time. But a book I felt I needed to read again.

The book?

Fran Drescher’s Being Wendy

I admit, when the book was published back in 2011, it first caught my eye because of the title. There are only a few claims to fame for fellow Wendy’s:  my name is said to have been invented by J. M. Barrie for his “frendy Wendy” character in Peter Pan, and I’ve got a hamburger fast food chain that shares my name.

But I re-read the book, because I needed to be reminded that I don’t have to fit into just one box, that one single thing doesn’t define me.

(In case you’re not familiar with the book, Being Wendy is the story of Wendy, a young girl who doesn’t want to choose to wear one box for the rest of her life. In her hometown, the rule is : “The Boxville way is to choose a box for the rest of your days.”  She doesn’t want to just be a teacher, just be a police officer, just be any one thing.  Her ideas and her dreams are too far-reaching, and one box just won’t work for her.)

Lately, it’s easy to lose sight of that. 

I have been dealing with a multitude of tests and consultations with doctors, and in my experience, doctors don’t always take the time to see their patients as complete people. 

And I don’t want to just fit into my “chronic illness” box.

I need to remind myself that there are so many other parts of me, so many other aspects of my personality that have nothing at all to do with the persistent pain in my left leg.

I’m a reader.

I’m a writer.

I’m a sunflowers-over-roses type of woman.

I’m a silver-over-gold type of woman.

I’m a singing-along-to-Abba-while-I-cook-dinner type of woman.

I’m a never-learned-to-whistle type of woman.

I’m a jewelry-wearer.

I’m a candle-burner.

I’m a chocolate-eater.

I’m an apple-juice-with-breakfast type of woman.

I’m a daily-to-do-list writer.

I’m a believer in good omens and signs.

I’m a pen pal.

I’m a former florist.

I’m a current home gardener.

And the list could go on. Which makes me smile.

I’m not just a woman with an autoimmune disease. 

Regardless of what the tests show or don’t show, I’m so much more.

Holding Onto Hope

(These beautiful lines were stenciled on the sidewalk, near where I parked my car, before meeting with a new neurologist.)

In one week, on two consecutive days, I had two very different medical experiences.

Day One: A follow-up with my rheumatologist. An appointment to “strategize” (his word) because after all my tests, he had no definitive answers or explanations to offer me. It’s been a lot of tests, even during the pandemic. A muscle biopsy, meetings with specialists, vials of blood (17 at one visit!), an MRI.

All these tests have ruled out a lot of really bad possible diagnoses. No red flags have been waved. And yet, we still don’t know why – why the pain has spread in my left leg.

I keep going to these appointments, I keep meeting with new doctors (a neurologist and a hematologist within the last few months) for two reasons. I remain hopeful that one day, someone will reach an “Aha moment,” something that gives us some answers, and most importantly, gives me some pain relief. But I also go to these appointments out of fear. Fear that my autoimmune disease is worsening. And when there’s something bad going on in your body, usually, the sooner it’s found, the sooner it’s caught, the better the prognosis. 

And then, Day Two: I received my first dose of the Pfizer vaccination! Here in California I qualified, not because of my age, but because of my underlying health condition. And all I can do is marvel at it all. In one year’s time, this horrific pandemic changed our planet, took the lives of over half a million souls in our country alone. And yet, in one year’s time, a vaccine was developed, tested, and is being rolled out in increasing numbers. 

And now I’m waiting. Waiting to meet with another specialist. Waiting for my second vaccination dose.

Which brings me back to hope.

An Astronaut’s Perspective

From the time I was in fourth grade until the time I was in eleventh grade, I had one career goal – to become an astronaut.

If you’ve been reading my work for a while, you know I never became an astronaut.  And while I loved my teaching career, I never stopped being interested in manned space exploration. So of course, I was eager to read How to Astronaut: An Insider’s Guide to Leaving Planet Earth by Terry Virts.

Mr. Virts tells the story of traveling into space, from training, to launch, to orbit, and re-entry.

The book is organized into fifty-one short chapters and includes not only one-of-a-kind observations but funny anecdotes as well.

“The space station is, in many ways, a thirteen-year-old boy’s dream. You can float around like Superman. You can eat whatever you want and your parents aren’t there to nag you. You have your own room and you close the door and nobody tells you to clean it. Best of all – no showers! For 200 days in a row!”

“It was the example of how people should work together to solve important problems, leaving petty political bickering behind. That is exactly what we did and what the space program in general has done for many decades. The vacuum of space is a harsh and unforgiving environment, and it does’t care what country you are from or what your ideology is. Unless you approach spaceflight focused only on getting the job done and working as a team, you risk dying. 

And that, my friends, is a lesson that we would do well to learn down here on our home planet.”

“I think that attitude is the key to many of our situations in life. Make the most out of your circumstances. Enjoy what you can. Learn from what you can. Suffer through what you must. And learn from it. What doesn’t kill you should make you better. If you go through life with that attitude, you will be happier and more successful than by complaining.”

“…the universe is inhospitable and cold and dark and wholly incompatible with life, with the exception of our blue planet, as far as we know. I had a new sense of thankfulness and appreciation for our home, drifting through space like a giant spaceship carrying the entirety of our species on a timeless journey. We should take care of it. There is no plan B; there is only plan A.”

And, I found it absolutely wonderful to get to the acknowledgement section at the back of the book, and find that the first people Mr. Virts chose to acknowledge were his high school English teachers! 

Enjoying Some “Alone Time”

Over the years, I’ve taken myself out to lunch. Out to coffee. Out to a movie. 

I’ve traveled a bit by myself, too. A writing retreat. An overnight “Mommy-vacation.” Day-long explorations in San Francisco – wandering through the shops in Chinatown, meandering through Golden Gate Park, eating a crepe in the Haight-Ashbury district. (My husband was in all-day trainings for work. While he sat in a hotel conference room, I took the rental car and explored the city.)

I recently read Alone Time: Four Seasons, Four Cities, and the Pleasures of Solitude by Stephanie Rosenbloom. 

Ms. Rosenbloom explored four cities – Paris, Istanbul, Florence, and New York – alone. While the book is a reflection of her experiences, it also includes statistical information and academic studies supporting the benefits of solitude and solitary pursuits.

I think sometimes people are afraid to be alone. (And let’s be honest, with so many working and learning from home, alone time is a precious thing.) 

Here are a few passages from the book I’d like to share with you:

“Alone time is an invitation, a chance to do the things you’ve longed to do. You can read, code, paint, meditate, practice a language, or go for a stroll.”

“Alone, we can plumb local markets and examine their wares closely. We can breathe in and relish the flavors in a sauce, or the coolness of a pitcher of cream. We don’t necessarily take time to do these things in the presence of company, particularly during lively conversation. A solo meal is an opportunity to go slow; to savor.”

“Even when the outcome isn’t what we hoped it would be, making the effort to experience something new can still be good for us. It can help us think of ourselves as the kind of people who are capable of taking action…”

“…it can whet our appetite for future risks. These risks need not be major. Simply getting out of our comfort zones – trying a different route to work, introducing ourselves to a new neighbor, speaking up for something we believe in – is important…”

“Each day for a week, plan and take a daily vacation by doing something that you enjoy for twenty minutes or more. The vacation can be something as simple as going for a walk around your neighborhood, or thumbing through a book on gardening. Aim to be in the moment…”

Permission Not to be “Strong Tonight”

Do you have a go-to song?

A song you listen to when you need that extra bit of encouragement? That extra motivation to keep pushing through?

I have those songs, but I also need another kind of song.

A song that gives me permission to just stop. Stop trying to be so strong. Stop trying to hold it all together. Stop trying to keep it all inside.

You can click here to be re-directed to The Mighty to read my personal essay, “The Rita Wilson Song That Helps Me Deal With My Chronic Illness.”

Readers, I’d love to know about your songs? Which songs bring you comfort? Which songs help you? Feel free to share in the comments.

Chronic Illness and an Octopus

Over the years, more and more of my writing has described different aspects of my life with a chronic illness. 

Writing about it is different than talking about it.

But that’s what I recently did.

Julie Morgenlender, editor of The Things We Don’t Say: An Anthology of Chronic Illness Truths, recently spoke with me about my experience living with a chronic illness. Among other things, we talked about invisible disabilities and illnesses, ableism, diagnoses, and octopuses!

You can watch the video on YouTube by clicking here.

Deserving of the “Good Paper”

The theme for the March issue of Sasee Magazine is “Planting the Seed.” 

Some writers might read that and think in literal terms – planting seeds, watching a garden grow, waiting for a flower to bloom.

I took that theme and went a different way. 

I wrote about my second grade teacher, Mrs. Jones. It was she who, all those years ago, “planted the seed” and helped me believe I could be a writer.

Click here to read my essay, “Deserving of the Good Paper’ ” in its entirety.