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.

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.

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.

8 Things Doctors Can Learn From Teachers

It’s definitely not a doctor’s office or exam room. Still, doctors can learn a lot from teachers.

I first became ill ten years ago. 

In that time I’ve seen a lot of doctors.

I don’t look forward to these appointments. Especially when I’m seeing someone new.

I dread having to explain and describe my symptoms and my pain to yet another doctor. I’m tired of re-hashing my story, my medical history. I’m tired of trying to explain to someone what my days and nights are like. 

And after all that, I’m tired of the non-answers, the uncertainty and confusion that my particular medical condition seems to present.

It’s been my experience that doctors could learn a thing or two (or eight) from teachers. A parent/teacher conference does, in fact, share similarities to a doctor’s appointment. 

Click here to read my personal essay “8 Things Doctors Can Learn From Teachers.” 

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. 

Jewelry and Pain Are Not Mutually Exclusive

What is someone in pain “supposed” to look like?

Apparently, some people who know me find it hard to believe my pain can be pulling-my-hair, biting-my-finger-in-agony kind of pain when I’m still wearing all my jewelry. And it’s a lot – bracelets, nine rings, earrings, anklet. 

But guess what?

“Yes, You Can Wear Jewelry and Be in Pain at the Same Time.”

That is the title of my recently published essay. Click here to be re-directed to The Mighty to read it in its entirety.