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.”
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.
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.
(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.
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!
WendyKennar.com 