In our family, we’re big fans of space exploration, and books and movies about space exploration. My son and I can recite lines and lines of dialogue from the Ron Howard-directed film Apollo 13. (We know much more than the famous, “Houston, We have a problem.”)
When we watch Hidden Figures, we cheer as Kevin Costner’s character breaks down the “colored ladies room” sign. We applaud when he says, “Here at NASA, we all pee the same color.”
And today, we stop and think about the moon. About those who have traveled to, and walked on, the moon. Those who worked to make it possible for human beings to leave our planet and return safely home.
Because today is National Moon Day.
Today is the 53rd anniversary of the first manned landing on the moon — Apollo XI, with astronauts Neil Armstrong, Buzz Aldrin, and Michael Collins.
It is one of those defining moments in human history. Those that were old enough remember the significance of the time, and can recall details about where they were when Neil Armstrong spoke to the planet — “That’s one small step for [a] man, one giant leap for mankind.”
I’m not old enough. But I can tell you that Alan Shepard hit a golf ball on the moon (Apollo XIV).
Astronaut David Scott (Apollo XV) conducted a science experiment, demonstrating that a hammer and feather would fall and hit the surface of the moon at the same time.
And astronaut Charles Duke (Apollo XVI) left a photo of his family on the moon.
And today, in the photo above, I share with you just a few of our family’s moon-related books.
Readers — I would love to hear from you. Favorite space-related memory? Book? Movie? Please share!
I was not disappointed. My copy is full of sticky notes and many passages are marked with my highlighter. This book is really such a gift. And while we’re at it, Robin Roberts is really such a gift.
It’s the way Ms. Roberts writes, as if she’s sitting down giving you a pep talk. Here are just a few gems to share with you:
“Yet here’s what I believe: Optimism is a muscle that grows stronger with use.”
“I’d like to pass on to you the gem my parents once gave me: You already have everything you need to forge a new path for yourself. I know you’re fierce, because it takes chutzpah to consider a new course. And I’m betting that you’ve got hope that tomorrow can be better, ‘cause otherwise, you probably wouldn’t have picked up this little tome.”
“Confidence isn’t the absence of fear; it’s the presence of mind to move through the trembling.”
“During my dual showdowns with cancer, I brought my gratitude A game. I knew I had just two plays: I could allow the illness to destroy and define me, to permanently cripple my spirit. Or I could embrace the experience as a rebirth, as a butterfly struggling against the walls of its cocoon, and getting stronger as it does.”
“People often see the glass as half-empty or half-full. I simply see the glass.”
“Do you want it more than you fear it? It’s what I now ask myself whenever trepidation makes a house call.”
“We may not ever fully comprehend why catastrophe has befallen us, and that’s okay. Our job isn’t to comprehend it. It’s to redeem it for good.”
“My village — not an absence of fear — got me through the most harrowing two ordeals of my life-time. That is why I know this: Strength, the real kind, isn’t about braving the behemoths on our own. It’s about being willing to receive — to embrace the help, hope, and healing others want to give us. Vulnerability is the gateway to fortitude. An ever-deepening intimacy with those we love is the enduring treasure.”
“When I’m dealing with a situation I think is all-important, I put it through a litmus test: In a year or two, will this matter? Often it won’t, even in a few months. That awareness changes my perspective and re-anchors me in the present.”
“That’s part of what it means to be brighter by the day: to be mindful of every breath we’re given. Don’t rob yourself of that treasure.”
For me, July also marks the anniversary of “the day,” — the day I went into the hospital with a swollen left calf, unable to walk, unable to stand, without knowing that was only the beginning of my life with an invisible disability. (Twelve years ago this month.)
After I became ill and was finally diagnosed, I went looking — for help, for support, for community — in books. I didn’t find much.
Since then, however, my library has expanded and includes books that speak to my life with an invisible disability. Not necessarily because the author also has an autoimmune disease or chronic pain in her left leg. In fact, the specific details can vary widely, yet it’s the emotions we share. I read these books, and feel understood, and heard, and seen. And when you’re living with a medical condition that isn’t easily understood — by those closest to you and those treating you — that sense of community is huge.
So this week, I’d like to share just a few books in honor of Disability Pride Month and Chronic Disease Awareness Day.
– Bravey by Alexi Pappas. The specifics are very different (she’s an Olympian after all!), but the emotions are similar. My copy is full of sticky notes. (You can check out my blog post, “Trying To Be a Bravey,” by clicking here.)
– The Things We Don’t Say: An Anthology of Chronic Illness Truths edited by Julie Morgenlender. I’m proud to say my essay, “Chronic Contradictions,” is included in this incredible collection. In this anthology “forty-two authors from around the world open up in fifty true stories about their chronic illnesses and their search for answers, poor treatment by doctors, strained relationships with loved ones, self-doubt, and more.” (You can read an earlier blog post written shortly after the anthology was published by clicking here.)
– Chronic Resilience by Danea Horn. I don’t remember how I discovered this book. I just know I felt so lucky to have found it. I have read it more than once, and even wrote the author a fan letter! I highly recommend it. (You can learn more about the book here.)
– The Pretty One by Keah Brown. I found this book at Target and was captivated by the author’s smile and joy that is so evident on the front cover. (I wrote a blog post about Ms. Brown’s book and several of my favorite passages. You can read it here.)
– No Cure For Being Human by Kate Bowler. Incredible writing. Beautiful, profound, and funny too. (This book I read fairly recently, back in April. You can read my blog post, “No Cure For Being Human,” by clicking here.)
Readers, any recommendations? I’d love to hear about books you have read that you think those of us with disabilities and/or chronic diseases would enjoy reading.
Why do you buy the books you do? (Notice how I just automatically assume you’re a book-buyer.)
I just finished reading Emily Henry’s People We Meet on Vacation (so enjoyable, 4-stars on Goodreads). And now comes the hard part — deciding which book to read next.
I looked at my over-flowing books-to-read shelf and realized I buy books for different reasons.
Your turn readers. What books are on your shelf waiting to be read? What motivated you to buy them? Please share; I’m always looking to add titles to my “want-to-read” list.
The view from our balcony. I admit – I didn’t get a whole lot of writing done.
For this weekly blog of mine, I generally write about one of three B’s in my life:
– Books (because a writer must also be a reader)
– Boys (mainly my fourteen-year-old son)
– Bodies (living with my autoimmune disease, an invisible disability).
Last week, it occurred to me just how much those three are often connected and inter-related.
Let me explain.
Last week at this time, my family and I were in Maui.
This was a big trip for us. The last time my husband and I were in Maui was for our honeymoon, twenty-three years ago. Our son had never flown before, and I hadn’t flown since before my son was born. Which means I hadn’t flown since my UCTD (undifferentiated connective tissue disease) diagnosis. Add in my worries about COVID, and you can understand why I went into this trip with a great deal of anxiety. At the same time, I was determined to experience the trip as fully as I could.
Which is where the B’s come into play.
In terms of books, I brought one book and one magazine with me. I didn’t read nearly as much as I thought I would. There were no days spent lounging by the pool. There was too much to see and do — including a visit to the Barnes and Noble in Maui.
When it comes to boys, my son was much more adventurous than my husband. During the planning stage of this trip, my son had told us he hoped we could go parasailing and ziplining in Maui. I had been parasailing once before, many years ago, on Catalina Island. That time, my husband was an observer, not a participant. And he opted for the same role this time around.
It was because of my son that I pushed my body as much as I did.
Parasailing? Me? Yes, definitely. The parasailing itself didn’t cause additional pain in my leg. The only pain and discomfort came from getting in and out of the boat. But, it was a small price to pay for the incredible experience, as my son and I rode tandem and admired Maui’s beauty from such a unique perspective.
Ziplining? Me? Yes, I think so. Neither one of us had ever gone ziplining before. We signed up for an eight-line zipline adventure that promised to be something neither one of us would forget. I worried that I wouldn’t pass the knee and ankle check that takes place before we’re loaded into the van and driven into the hills. (On my waiver, I did disclose the information about my illness, and I did pass the knee and ankle check. The woman who observed me and gave me the final clearance reminded me to just go slow and hold your son’s hand to help you.) The actual ziplining wasn’t nearly as hard on my body as the hiking and walking from one spot to another. And I admit, I did slip and fall during one of our walks — thankfully, no injuries or scrapes.
What an awe-inspiring experience we had. Views of the Pacific Ocean if we looked one way, views of the West Maui Mountains when we looked the other way.
I felt strong, something I don’t always feel.
Because on this same trip, I did something I had never done before. I used a wheelchair. A very good friend of mine had encouraged me to take advantage of the wheelchairs available at airports. Don’t waste your legs standing in line and walking through an airport, she said. And she was right. But it still didn’t make it any easier for me to ask for that accommodation. In fact, I waited for the day before our trip to submit the request.
We did a lot of walking during our trip. (Sand is so hard to walk on!) We did some hiking, too. There was so much to see (chickens and roosters in parking lots, waterfalls, flowers), so much to admire (sunsets, rainbows, puffy clouds), and so much to be grateful for (our trip, our safety, all that my body can still do).
And we each came home with one more book than we left with.
These are just a few of the books I have bought but haven’t yet read.
I have a few “bad” habits.
I use quotation marks around bad, because it’s a subjective term. My bad habits could be someone else’s “no-big-deal” habits. And they’re not bad-bad, they’re just things I could improve on.
1. I leave the printer on. Long after I’m done printing, I often forget to power it off.
2. I push through and keep to my schedule regardless of how I’m feeling. If Wednesday is my day to Swiffer the floors and vacuum the area rugs, I do it. Regardless of my pain level, I feel I must maintain my schedule.
3. I buy too many books. I have so many books on my shelf, waiting to be read. My “want-to-read” list on Goodreads numbers in the hundreds. Some of these books are written by authors whose other books I have enjoyed. Some are books I bought after listening to the author talk on a podcast or interview of some sort.
While this doesn’t mean I plan to stop buying books, it does mean I’m aware of the situation. And the lack of available shelf space.
How about you, readers? Any “bad” habits you want to share? Do you find yourself buying more books than you should?
Which means he’ll soon be a freshman in high school.
When I was pregnant, and right after Ryan was born, everyone told me his childhood would pass by quickly. “They grow too fast,” my mom often said.
My mom, as she tends to be, was right.
High school will be a new experience. And what is new can also be intimidating and scary. Yet I have no doubt that my son is ready. He has a good head on his shoulders and a kind heart. Plus, he and his classmates have done something never before done — they spent their middle school years in the middle of a global pandemic. (Ryan was sent home in March of 2020, as a sixth grader. He returned to campus in August 2021, as an eighth grader.)
Yet, in case he, and other graduating students, need some encouragement, I offer these famous words from Oh, the Places You’ll Go! by Dr. Seuss.
“You have brains in your head. You have feet in your shoes. You can steer yourself any direction you choose. You’re on your own. And you know what you know. And YOU are the guy who’ll decide where to go.”
“You’ll look up and down streets. Look ‘em over with care. About some you will say, ‘I don’t choose to go there.’ With your head full of brains and your shoes full of feet, you’re too smart to go down any not-so-good street.”
“Out there things can happen and frequently do to people as brainy and footy as you. And when things start to happen, don’t worry. Don’t stew. Just go right along. You’ll start happening too.”
“You’ll get mixed up, of course, as you already know. You’ll get mixed up with many strange birds as you go. So be sure when you step. Step with care and great tact and remember that Life’s a Great Balancing Act. Just never forget to be dexterous and deft. And never mix up your right foot with your left.”
“And will you succeed? Yes! You will, indeed! (98 and 3/4 percent guaranteed.) KID, YOU’LL MOVE MOUNTAINS!”
“It’s good,” I said as I held it up and showed it to the barista. He had just brought out my blended mocha and set it down on the table for me.
“It’s about Giannis, the basketball player,” I said.
“Oh, basketball,” he said it with a bit of a question in his voice.
It might not seem like a book I would pick up. Especially if you checked out my Goodreads record and saw the last book I read was Jasmine Guillory’s The Wedding Date.
I try to alternate, reading fiction and nonfiction. And when it comes to nonfiction, I enjoy reading memoirs and biographies. Because I believe everyone has a story. The specifics may vary, but in those specifics you tend to find the universal.
So now I’m reading Giannis: The Improbable Rise of an NBA MVP by Mirin Fader. (In case you don’t know, Giannis Antetokounmpo plays for the Milwaukee Bucks. In 2021, they won the NBA Championship.)
On the surface, Giannis and I don’t have much in common.
But that’s okay. That’s more than okay. That’s why books are so valuable. They give us the chance to take a peek at someone else’s life. To realize the many ways we are similar. To acknowledge that what you see on the surface is rarely the full story.
My family and I are basketball fans. While we always root for our Los Angeles Clippers, we are admirers of the game and those that play with heart and soul.
In The Book of Hope by Jane Goodall and Douglas Abrams with Gail Hudson, Dr. Goodall describes hope as “what enables us to keep going in the face of adversity. It is what we desire to happen, but we must be prepared to work hard to make it so.”
This book was written during the pandemic, a time when it sometimes felt like all we could do was hope; hope to stay healthy, hope to stay safe, hope for a vaccine.
This is a powerful book with a powerful message, and this week I’m sharing some of my favorite passages.
“You won’t be active unless you hope that your action is going to do some good. So you need hope to get you going, but then by taking action, you generate more hope. It’s a circular thing.”
From Douglas Abrams, “I was surprised to learn that hope is quite different from wishing or fantasizing. Hope leads to future success in a way that wishful thinking does not. While both involve thinking about the future with rich imagery, only hope sparks us to take action directed toward the hoped-for goal.”
“The trouble is that not enough people are taking action,” Douglas Abrams said. “You say more people are aware of the problems we face — so why aren’t more trying to do something about it?”
“It’s mostly because people are so overwhelmed by the magnitude of our folly that they feel helpless,” Jane Goodall replied. “They sink into apathy and despair, lose hope, and so do nothing. We must find ways to help people understand that each one of us has a role to play, no matter how small. Every day we make some impact on the planet. And the cumulative effect of millions of small ethical actions will truly make a difference. That’s the message I take around the world.”
“Jane’s stories affirmed that when we feel we can make a difference, and we’re given the means to do so, positive outcomes can happen that in turn allow hope to prevail. It was a powerful example of what the research had found contributes to hope: clear and inspiring goals, realistic ways to realize those goals, a belief that one can achieve those goals, and the social support to continue in the face of adversity.”
“From talking with Jane and doing my own research, I was starting to see that hope is an innate survival trait that seems to exist in every child’s head and heart; but even so, it needs to be encouraged and cultivated. If it is, hope can take root, even in the grimmest of situations…” from Mr. Abrams.
“Well, I always knew I had a gift for writing,” Jane added. “From an early age I was writing — stories, essays, poems. But I never thought I had a gift for speaking. It wasn’t until I was forced to make that first speech, and found that people were listening, and heard their applause at the end, that I realized I must have done okay. I think many people have gifts that they don’t know about because nothing forces them to use them.”
“That when the trials of life come, you’ll be given the strength to cope with them, day by day. So often I’ve thought at the start of a dreaded day — having to defend my Ph.D. thesis, giving a talk to an intimidating audience, or even just going to the dentist! — ‘Well, of course, I shall get through this because I have to. I will find the strength. And, anyway, by this time tomorrow it will be over’.”
Readers – I wrote this blog post before the horrific school shooting in Texas. I wrote this blog and now am re-reading it with a broken heart. Hope — it’s more than just wanting things to change. I hope my son will grow up reading about gun violence in history books, as something that used to happen, not reading about it in the newspaper because gun violence remains a current event. Hope involves action. For me, now, that takes the form of voting. Continuing to Vote in Every Single Election. And I hope my readers feel the same way.
Words are powerful. What you say, and how you say it, have lingering effects. And I’m not just talking about words spoken to someone else. Also included in this list are the words we speak out loud to ourselves (I’m not the only one who talks to herself, am I?) and the words we think to ourselves.
We know this.
But sometimes, something happens that serves as a flashing-light reminder of just how true that is.
Last week, I had two such incidents.
My neighbor and I were chatting and catching up. She’s almost forty years older than me and was talking about some new pain she’s experiencing in her lower back/side area. Thankfully, all x-rays came back fine, no problems identified. She found herself in a situation that I know all too well. Tests are negative, big problems ruled out, but still no answers about what’s causing the pain and no clear direction given on how to alleviate the pain.
“I tell you, living with chronic pain is no fun,” she said.
I know.
“I don’t know how you do it,” she said.
I bit my tongue.
She went on a bit, describing the discomfort, and again said, “I really don’t know how you do it.”
I looked at her and said, “I don’t have a choice.”
I do it, I live with chronic pain, because I have to. Because there is no alternative.
And though not her intention at all, and though I’m not fully sure why, her words got under my skin and bothered me.
The second conversation occurred the next day, during a telehealth appointment with my rheumatologist. Near the end of our conversation, I asked her about a trip my family and I are thinking of taking.
“We’re thinking about going to Hawaii,” I said. “But I haven’t flown since before my son was born, and he’s 14. I haven’t flown since I have this condition. And I’m worried, because of the blood clot I had after my biopsy.”
(In case you missed it, I had a second biopsy in September 2020. A “routine” procedure that was supposed to provide some answers to my rheumatology team. No answers, and I developed a “very rare” blood clot in my left calf. You can read about it here.)
She answered my questions, told me some things I could do before, during, and after flying. And then she said something that has been on repeat in my head since she said it.
“Oh, go, you need to have some fun.”
And that advice, given with a smile through a screen, was encouragement and validation I hadn’t realized I needed.
WendyKennar.com 