“It’s not a realization that came to me easily or early on in my life as a chronic illness patient. It took me several years to finally recognize it and to see what had been in front of me all along.
Not until I marked my submission tracker with that most depressing word, “Declined,” did I make the connection. I realized that having a piece of writing declined and leaving a doctor’s appointment without any answers share many of the same emotions.”
Those paragraphs are taken from my personal essay, “Dismissals and Rejections — of Symptoms and Submissions,” recently published at Spoonie Authors Network. You can click here to read the essay in its entirety.
I’ve been told I have a positive attitude. I’ve been praised for not letting my autoimmune disease take control of my life.
I try. I try very hard to look at the bright side, to acknowledge that things could always be worse, to do the things I want to do pain or no pain.
But, in all honesty, the last couple of weeks have been really bad. Like trying-not-to-cry-as-I-walk-back-to-the-car-after-taking-my-son-to-school bad.
In our home, we don’t curse. Even words that other families might use, like “sucks,” isn’t a word we use. Except, occasionally.
Today is one of those occasions.
Chronic illness sucks. Chronic illness that causes chronic pain really sucks. There’s no rhyme or reason to it. For example:
Sleep does not equal less pain. I rarely sleep through the night. If I only wake up once, that’s a good night’s sleep for me. But the other night I did something I hadn’t done in a long time — I slept through the night. My body had a full night of uninterrupted sleep. I woke up, amazed to realize it was morning. I got out of bed and felt … lousy. Terrible pain. From the moment I woke up until I went to bed again that night.
Muscle spasms worsen everything. I was sitting at my desk, with the dull pain I’m used to in my left leg. As my son was showering, my left calf began to twitch. And not in its usual twitching spot — more on the inside of my leg. This was the outer side of my calf. My muscle twitched, and I tried to rub my leg. My muscle continued twitching, and I bit my finger. It finally stopped twitching and I had a really hard time getting up from my desk chair. I had an even harder time stepping into my own shower. My leg was tight when I went to bed that night and no different when I woke up with the alarm the next morning.
Rest doesn’t automatically mean relief. I have been making an effort to take time for myself. To rest. Not in the form of a nap, but sitting outside on our patio, reading a book. I usually spend my days taking care of household chores, dealing with appointments, and writing. But I have been making a conscious decision to set aside some time during the week — when my husband is at work and my son is at school — just for me. To sit in one of my favorite places, doing one of my favorite things. I hoped to notice an improvement — an increase in relaxation, a decrease in discomfort. Nope. Maybe it’s too soon. Maybe I need to do this more often, more consistently. In any event, I got in some extra reading time.
Pain levels fluctuate. When I spoke to my husband on one of his breaks, my pain wasn’t bad. It felt so good to be able to say that to him. By the time he called on his next break, about three hours later, it was bad. Pain-pill bad. I hadn’t done anything physically strenuous or anything I could see as a possible trigger (like gardening or standing on a step-stool to reach something on a high shelf in the closet). The pain shifted — from not bad to real bad. And for no apparent reason.
Months ago, I listened to a virtual author talk sponsored by the Los Angeles Public Library System. As a bonus, everyone in attendance was eligible to enter a raffle to receive a free copy of one of the author’s books.
For most of my childhood (fourth grade to eleventh grade), my dream was to become an astronaut. And today I am just as curious, just as awe-struck of those individuals who do become astronauts.
This week, I’d like to share a few passages that stood out to me during my reading. What really struck me were the supportive words and encouragement the author received from so many members of his family as well as several of his teachers.
“That is why the individuals who are named José are known as creators. You have the power to create a reality out of your dreams and shape your life accordingly.” Encouraging words spoken by Mr. Hernández’s abuelo.
I loved reading about Mr. Hernández watching Neil Armstrong on the moon and deciding he wanted to be an astronaut:
“When I heard these words, I felt indescribably shocked. I was captivated by this man, by this science, which left me in awe. Absorbed in the broadcast, I got up abruptly to get closer to the television screen. I had an epiphany. During that exact moment, I discovered what I wanted to be when I grew up: an astronaut, or un astronauta. And from that moment on, I was determined that absolutely nothing would get in the way of my dream.”
And while strapped in and waiting for space shuttle Discovery to launch, Mr. Hernández thought:
“La magia, or magic, is hard to discover, but I believe that passion in the heart and positive thinking in the mind are the two ingredients for achieving something extraordinary. Just ask a scientist, an inventor, or an artist — a simple idea or dream has given birth to some of our history’s greatest inventions.”
You can also learn more about Mr. Hernández and his Reaching for the Stars Foundation by clicking here. A Netflix film is being planned about Mr. Hernández’s life and journey into space.
A year ago there was a moment in time when I was thankful for the pandemic.
Because of the pandemic, my husband was working from home and my son was participating in Zoom school. Because of the pandemic we were all at home, all able to hold hands and witness together the historic Inauguration of President Joe Biden and Vice President Kamala Harris.
I don’t remember much of the speeches from that day. But I do remember a strong feeling of reassurance. The feeling you get when the teacher is back in the classroom instead of an inexperienced substitute who has poor classroom management skills.
And I absolutely do remember Amanda Gorman. I remember her yellow jacket and her red headband. I remember her poise and presence. And I remember the delivery of her powerful words. Words that seemed to envelope us all, and remind us of all that is good and possible. Words that made me feel we were on the road to being okay.
As Oprah Winfrey writes in the foreword of this collectible gift edition, “Everyone who watched came away enhanced with hope and marveling at seeing the best of who we are and can be through the eyes and essence of a twenty-two-year-old, our country’s youngest presidential inaugural poet.”
When I recently re-read The Hill We Climb: An Inaugural Poem For the Country, I was just as awestruck as I was the first time. If you haven’t re-visited Ms. Gorman’s powerful Inaugural Poem, I highly recommend it. This is a book which forever will find a home on my bookshelf, and years from now, will be passed on to younger generations.
It’s a book about acknowledging all the ways we express ourselves creatively. It’s also about acknowledging the need for, and the benefits of, dedicating time and energy to a creative project.
I love Ms. Cook’s definition of creativity:
“Creativity is the box of crayons we use to tell our story, and in telling our story we figure out who we are.”
And I love this recommendation:
“Every day, do one good thing. And after that, give yourself permission to do one creative thing for yourself.”
Then there’s this bit of motivation:
“Being creative is about touching hearts. It’s about finding our own heart. It’s about tapping into our past and remembering the unique experiences and insights that make us who we are. It’s about flipping our adversity and challenges and experiences into a point of view, a vision, a style, a voice. It’s about standing strong in our authenticity and individuality and distinctiveness.”
I also enjoyed this paragraph about one of the benefits of getting older:
“Because the coolest thing about getting older is that we really can just be whoever the hell we want to be. If we’re lucky, we’ve stopped caring so much about pleasing the rest of the world. Nobody can tell us who we are. Or who we aren’t.”
Since this is my first post in 2022, I wanted to take this opportunity to tell you about the #22in22 Initiative started by Zibby Books.
Here’s what you need to know:
The idea behind #22in22 is to visit 22 bookstores in 2022. Physically visit (if you’re able) twenty-two bookstores. This can be twenty-two different bookstores, or maybe you just visit your top three bookstores multiple times this year.
Your visits are a way to support bookstores and books. And by extension, you’re supporting authors and booksellers and everyone who works to get books on shelves.
You can sign up at https://www.22in22.net (it’s super easy), and each time you visit a bookstore, return to the website to log your visits. There are different incentives you can earn along the way. But really you’re doing it for yourself (because a visit to a bookstore is a great way to spend part of a day) and the larger book community.
The #22in22 Initiative started on Small Business Saturday, so I got a head start and have logged two visits so far:
Once in a while you come across a book and you suddenly have this urge to buy cartons and cartons of this book, plant yourself on a busy corner, and pass them out to everyone who walks by.
While our chronic illnesses and experiences are vastly different, the book is so very relatable. The bottom line is everyone living with a chronic illness and everyone who knows someone living with a chronic illness, should read this book.
I don’t remember how I first learned about this book. But I do know that this is one of the few books I have bought sight unseen. I bought it based on what I read about it. I bought it because I had a desire to read something by someone who “gets it.”
And Tessa Miller gets it:
“I needed a book written by someone who exists in that foggy space between the common cold and terminal cancer, where illness doesn’t go away but won’t kill you. I needed someone who lives every single day with illness to tell me that 1) I wasn’t alone and 2) my life was going to change in unexpected, difficult, and surprisingly beautiful ways.”
“I didn’t know then that my life had changed forever. That I’d be able to divide my experiences into before I got sick and after I got sick.”
“I became a professional patient, and a good one. I learned that bodies can be inexplicably resilient and curiously fragile. I would never get better, and that would change everything: the way I think about my body, my health, my relationships, my work, and my life. When things get rough, people like to say, ‘this too shall pass.’ But what happens when ‘this’ never goes away?”
“And they shouldn’t doubt the level of pain you’re in just because you’re not writhing around on the floor; chronic illness patients learn to live with a shocking amount of physical discomfort and often go about it looking natural.”
“But grieving yourself when you’re diagnosed with a chronic illness is different. The emotions might be similar to those felt when mourning a loved one—anger, sadness, numbness, disconnection from reality —but the process of ‘moving on’ is more complicated. Whereas the loss of a loved one has a sense of finality, the loss of self from chronic illness can feel never-ending.”
“See, chronically ill people grieve two versions of ourselves: the people we were before we got sick and the future, healthy versions that don’t exist (or, at least, look much different from what we’d imagined). There’s no guidebook for this kind of ongoing self-loss. No Hallmark card that says, ‘Sorry you’ll never be yourself again.’ “
“Your body and your brain are not two separate entities. They’re a partnership. What happens to your body affects your brain, and what happens to your brain affects your body. Taking care of your brain’s health should be no less of a priority than taking care of your body.”
“ ‘God doesn’t give you more than you can handle,’ as the saying goes. But that isn’t the way it works at all. Some people have more suffering, and some have less, and there’s no rhyme or reason why. Bad stuff happens to good people with no other explanation than it just happens. Little babies die suddenly and horrible old billionaires live to see 105 and decent people get sick forever. Shit will never make sense.”
“And despite what the writing of a memoir signals, I don’t love to talk about myself IRL; the page makes me appear much braver than I am. But despite the fear, I keep sharing my stories through writing because that’s how humans connect and stay alive. Stories give us empathy. They make us strong. They offer perspective.”
“With any luck, you’re all enjoying your respective winter breaks. This happens to be the perfect time to read a book, watch a movie, and even enjoy a related snack. (Don’t forget to talk to your kids about the book and movie; compare and contrast the two versions of the story.)
The paragraph above is taken from my recently published essay, 5 Awesome Books and Movies (and the Food That Goes With Them) to Enjoy During Your Kids’ Winter Break. This was a fun list to write and brought me back to my teaching days.
Click here to read the essay in its entirety at Moms Don’t Have Time to Write and let me know if you have any favorite book, movie, and snack combinations!
I admit to not knowing a whole lot about Misty Copeland. But after watching the segment of “Dear…” on Apple TV+, which profiled Ms. Copeland, I wanted to learn more.
“Ballets are just stylized versions of these seemingly basic movements on a grand scale. If the basic strength and elegance of a barre class is like slipping on a little black dress, the challenge of dancing a full three-act ballet is like learning to accessorize for any occasion.”
Though we may appear to be vastly different, there were also several passages I read that made me feel as if Ms. Copeland was writing about a younger version of myself.
“I was a nervous child. And my unease, coupled with a perpetual quest for perfection, made my life much harder than it needed to be. “I think I was born worried. There wasn’t a day that I didn’t feel some kind of anxiety, especially in school, and my panic would begin from the moment I woke up, fretting that I would be late to homeroom, until I came back home in the early evening. I was just nervous about life, period. I felt awkward, as if I didn’t fit in anywhere, and I lived in constant fear of letting my mother down, or my teachers, or myself.”
“When I was a little girl, I lived in terror of being judged, of letting others down. I was the people pleaser.”
I really thought the only thing Misty Copeland and I would have in common was the fact we both grew up in Southern California. Reading her book made me realize there’s more to it than that.
And this is one of the reasons why I read as much as I do. This powerful feeling of connection and understanding.
If you could only write one letter to express your love to someone, who would you write it to?
For me, it’s easy to answer – my son, Ryan.
And I’m pleased to say the love letter I wrote to Ryan was included in the anthology A Love Letter (or Poem) To …
Here is the book’s blurb:
“Love in its many varieties, expressed in letters and poems from 202 writers worldwide, written to the object or objects of their affection, adoration, romantic passion, esteem and fantasy. Letters and poems to wives, to husbands, to children, to parents, to grandparents, to boyfriends, to girlfriends, to pets, to literary and film idols, and more. This is a book for anyone who loves love.“
Just a reminder – the holidays are coming up fast. This anthology could be the gift for the person in your life who loves love.
WendyKennar.com 