This picture was taken in July 2023, when our family was in Washington, D.C. I was super excited to explore the National Air and Space Museum, a museum I had wanted to visit since I was an elementary school student. And if you look closely, you’ll see I’m using my rented wheelchair as a walker. I didn’t cancel this trip because of my pain, because for me, that was “not an option.” (Taken from the famous words “Failure is not an option” spoken by Gene Kranz during the Apollo 13 Mission.)
September is Pain Awareness Month.
I’ve written about Pain Awareness Month before, last year in 2022 and back in 2021.
This year, though, I don’t know what I can write that is new or offers a fresh take on chronic pain. I think that’s largely because I have been trying to deal with increasing pain. Basically, my pain is worse — in intensity and in location. (For many years, pain was limited to my left calf. That is no longer the case. Now, it’s my left calf, my left thigh, both knees, and since about two weeks ago, my left foot.)
This could very easily be a glass-is-half-empty type of blog post.
But it’s not.
Because my son (now a sophomore in high school) shared something with me the other day that I think is defining worth writing about here.
On the drive home from school, my son told me about what he had to do that day during his Physical Education class. The laps around the track he ran. The stadium stairs he had to climb up and down, up and down, multiple times.
By the time class was done, he was super uncomfortable. Sweaty. Slightly out of breath. All of which is to be expected.
“I know it’s not the same thing, but my knees were really hurting. It was hard to get dressed and then climb the stairs to my next class. And it made me think that this must be like what it is for you. But like, all the time,” he said.
And I think my son’s comments truly illustrate the concept of Pain Awareness. No one can ever truly know my pain, but me. But this connection my son made, this attempt at putting himself in my shoes, was a beautiful gift he gave me.
Something happened a few weeks ago that I haven’t told anyone about.
Until now.
A few Saturdays ago, I came in from watering the plants on our back patio. (Just to paint the picture — we don’t have a hose out back. Watering the plants requires multiple trips in and out of the house, filling up two watering cans in our kitchen, carrying them outside, back in the house for refills, and so it goes.)
I came back inside after I had watered the last of the plants, and thought to myself, “I feel awful and I haven’t even done anything.”
But what happened next was not part of my usual pattern. Because immediately after that thought, a new thought entered my mind.
“That’s not true. I’ve done a lot.”
And as I put the yellow/green watering can on top of the refrigerator and the smaller, red watering can on the shelf near the refrigerator, I started mentally listing all I had done in the few hours I’d been awake.
Made the bed.
Made breakfast for myself and my son.
Emptied the dishwasher, with my husband’s help.
Got dressed.
Shredded papers and old bills.
Took out the trash and recycling.
Swept the patio.
Watered the plants.
That pause in my regularly-scheduled-programming — the internal loop that usually plays about my limited stamina and my increased pain — was, is, huge. It’s a sign that I have been working on myself. That I am actively trying to take better care of myself. Because while I know all about drinking water and trying to get enough sleep and taking my meds on time, the mental part of taking care of myself has been more difficult for me.
So I share all this in this week’s blog post because I am proud of myself. My therapist will know what a big deal this was, this is, for me.
I’m also sharing because I know how much it means to me to come across a piece of writing that speaks of this hard, hard experience of living with a chronic illness and chronic pain. When I read a personal essay that I connect with, that makes me think Yes, That. Absolutely that, I feel less alone in this isolating world of invisible illness.
It’s my hope this post can be that piece of writing for someone else.
If you have read my blog for a while and followed me on Instagram, you know I’m a fan of Katherine Center’s novels. I have heard Ms. Center describe her books as stories of people who get knocked down, and find a way to get back up. I have also heard Ms. Center speak of the benefits of love stories and romance novels and happy endings. In one interview, she said readers can relax, knowing the two love interests will somehow find a way to be together at the end. As the writer, she will not have one character suddenly get hit by a bus at the end of the book. At the beginning of the book, it’s a possibility, but by the end things will work out. (In fact, the book’s Author’s Note is an absolute must-read.)
All that is true in terms of Katherine Center’s newest novel Hello Stranger.
I found myself immediately liking Sadie, which meant there were a few nights I stayed up later than I anticipated, because I had to read one more chapter.
Here are some of the passages that spoke to me:
“Back home after that night in the hospital, nothing about my shack, or my life, or myself had ever felt less fantastic. It’s a disorienting thing to know there’s something wrong with you. It made everything about my life seem different. Worse. False. Like I’d been misunderstanding everything all along.”
“You are also your whole life story. And your sense of humor. And your homemade doughnut recipe. And your love for ghost stories. And the way you savor ocean breezes. And the appreciation you have for how the colors pink and orange go together. You’re not just your face, is what I mean.”
“ ‘I’m just going to take a fake-it-til-ya-make-it approach.’ That’s what I’d been doing my whole life. ‘If I can’t be okay, I’ll seem okay.’ “ ‘Seeming okay and being okay are not the same thing.’ “ ‘Close enough.’ “ ‘In fact,’ she said, leaning in a little, ‘they might cancel each other out.’ “ ‘Are you saying I should just walk around wailing and weeping?’ “ ‘I’m saying,’ she said, ‘that it’s better to be real than fake.’ “I could have argued with her. But I had a feeling I’d lose. “Dr. Nicole went on. ‘It might help people to know what’s going on with you. It might help them help you.’ “
“Maybe the best way to keep her with me was to embrace her spirit. To emulate her courage. To bring the warmth and love to the world that she always — fearlessly — had. “She had loved us without reservation. She adored us wildly. And laughed. And danced. And soaked it all up — every atom of her life — every moment of her time. “She felt it all. She lived it all.”
“It’s so strange to me now, looking back on that upside-down time in my life, how many good things came out of it. If you’d asked me at the time, I’d have told you everything was ruined forever. “But of course the fact it was all so hard is part of what made things better. “It forced me into therapy for a while, for one. “It forced me to rethink what making art meant in my life. “It forced me to reevaluate some ideas that I’d never questioned about who we all are and what it all means. Because things were so overwhelming, I had no choice but to accept some help. And then I found out that letting people help you isn’t so bad.”
“But I find the antidote to that is just keeping a sense of humor. And staying humble. And laughing a lot. And doubling down on smiling. We’re all just muddling through, after all. We’re all just doing the best we can. We’re all struggling with our struggles. Nobody has the answers. And everybody, deep down, is a little bit lost.”
“The more good things you look for, the more you find.”
A side note: my Katherine Center fandom includes purchases from the shop on her website. Highly recommend!
These framed Katherine Center prints hang on the wall above my desk.
Please note: I am including a link to buy the book that I’m highlighting this week. If you use my link, I do make a small commission on your purchase at no additional cost to you. I am working with Bookshop.org which also sends a portion of the profit to support local, independent bookstores.
It’s easy to get caught up in her life, her story, and then feel a bit in-awe of being granted permission to come along for this roller-coaster of a ride. Incredible highs to despairing lows, and through it all — love and hope.
Here are a few of my favorite passages:
“Writing taught me who I was, because your writing is your fingerprint. When I began to do it, I heard my own voice, my own observations, my own stories, my own gifts.”
“I think about it all the time. Sometimes very consciously, and sometimes it’s just fluttering in the back of things. For me, that is the most stunning thing about remission — the glorious sense that I have been given back life coupled with the terrible fear that death is behind the next lamppost. This gift could be snuffed out at any moment.”
“… but my relationship to the world has changed. It’s as if I’ve been knocked on the head. I look the same, I think, although there is uncertainty in my reflection that wasn’t there before. Would anyone else notice that? I’m not sure. I am physically, mentally, and emotionally wobbly.”
“Over the years I have seen many people on Tenth Street with rollators and walkers. Old people. Sick people. I have felt sorry for them. I used to look away. I regret, am even appalled, by my previous lack of admiration and empathy. Now I am feeble and they are looking at me, or avoiding looking at me. I have to summon my nerve. I have to ‘own’ it. If you see my vulnerability, I force myself to think, well, I hope you respect my bravery.”
“With transplants, he can follow his patients for years. He is very busy researching cures and saving lives, yet he finds time to read my novel Siracusa. He knows who I am. Not simply because he reengineered my bone marrow. He takes the trouble to know my brain and heart.”
“Everywhere I go, I get greeted with happiness and cheers for my bravery. It’s lovely but I don’t think I was brave. I was a captive on a no-exit journey. One way only. And, simply, I was fortunate that I didn’t die. I got my disease at a time of scientific discovery. I had great medicine and great love.”
Please note: I am including a link to buy the book that I’m highlighting this week. If you use my link, I do make a small commission on your purchase at no additional cost to you. I am working with Bookshop.org which also sends a portion of the profit to support local, independent bookstores.
“I foolishly thought having an autoimmune disease would be no big deal. I thought it was something that would fade into the background, behind more important things like my family and career. I thought Undifferentiated Connective Tissue Disease (UCTD) would be another footnote in my medical history, along the lines of my allergy to penicillin. I disclose my allergy any time it’s relevant, explain about the hives that develop, and when necessary, wear a hospital bracelet identifying “allergy.” But on a daily basis, my allergic reaction to penicillin isn’t a big deal. I don’t give it much thought. I assumed having UCTD would work the same way.
Wrong.”
The paragraphs above are excerpts from my personal essay, “A Safe Space.” And I’m proud to share “A Safe Space” has recently been published in Wishbone Words, Issue 11. You can access the issue by clicking here. (Just a note – there is a slight fee to download the issue.)
“The cracking open of a book’s spine has always been an exercise in self-discovery, healing, and fortification. That subtle whoosh when words spill out makes me salivate. Then the feel of the coarse pages under my fingertips delights my consciousness, the sudden sprinkling of syllables, the black-and-white letters in various patterns, coalescing to find their way directly to my heart. It’s magic.”
The Book of Hope by Jane Goodall and Douglas Abrams is a powerful read with many passages that really stood out.
Dear Readers, have you read any of these books? What book(s) would you add to this list? Let me know in the comments.
Please note: I am including links to buy the books that I’m highlighting this week. If you use my link, I do make a small commission on your purchase at no additional cost to you. I am working with Bookshop.org which also sends a portion of the profit to support local, independent bookstores.
I am pleased to share that my personal essay, “An Unplanned Path,” has been published in the most recent issue of Cosmic Daffodil Journal. You can click here to read the essay in its entirety. (The theme was “NATURA,” and nonfiction submissions had a 300-500 word count limit.)
In addition, Cosmic Daffodil Journal has created a free e-book, which will soon be available for download on the website, so you can read all the fine pieces of writing included in NATURA.
It should come as no surprise that I am a reader who likes a book with a happy ending. (You did read my post last month titled, “The Need for Romance Novels,” didn’t you? If you missed it, click here to check it out.)
So it really should come as no surprise that I thoroughly enjoyed reading Annabel Monaghan’s novel Nora Goes Off Script. Yes, it’s a romance. But it’s also more than a romance. I just couldn’t help but root for Nora, and I couldn’t help but see bits of myself in her — she has a weekly meal plan (Tuesday Tacos, Friday Pasta) and so do I (Tostada Tuesday, Pasta Thursday).
Here are just a few of my favorite bits:
“Pink ribbons, then orange creep up behind the wide-armed oak tree at the end of my lawn. The sun rises behind it differently every day. Some days it’s a solid bar of sherbet that rolls up like movie credits and fills the sky. Some days the light dapples through the leaves in a muted gray.”
“You live for your kids, and they live for you. There’s something almost sacred about what you have.”
“It’s possible that growing up watching the fantasy of this marriage is what makes writing romance movies so easy. My parents make me believe that some people really are made for each other and that a joyful, easy marriage is possible. Two people who love each other and are looking in the same direction can build a wonderful life.”
Also: this book was super popular last year. This year, the talk is about Ms. Monaghan’s most recent novel Same Time Next Summer. I have added it to my ever-growing want-to-read list.
Please note: I am including a link to buy the book that I’m highlighting this week. If you use my link, I do make a small commission on your purchase at no additional cost to you. I am working with Bookshop.org which also sends a portion of the profit to support local, independent bookstores.
This photo was taken at the National Museum of American History.
Everyone has defining moments. Moments you may not realize are monumental when they’re happening. But later — days, weeks, months, or even years later — you look back at that moment, that significant event and see it for what it is — a distinct, neon-yellow line dividing your life into before and after.
Thirteen years ago, I woke up on a Sunday morning, but I couldn’t get out of bed. My left calf had ballooned, and I suddenly couldn’t do the thing I had done for years — stand up. Next came a visit to the emergency room, a hospitalization, and what would become the beginning of my life as a chronic illness patient.
Last week, on the anniversary of that defining day, my family and I were on a summer trip visiting Washington, D.C.
It was a vacation of firsts — the first time we had visited our nation’s capital, and the first time I rented a wheelchair for the duration of our stay.
As I told my son, I don’t know if all future trips will require use of a wheelchair. But this year, it was an absolute must. (I also requested wheelchair assistance in the airports.)
Initially, I didn’t think I would need a wheelchair at all. Then I thought I could just borrow one of the wheelchairs most museums have available for guests. Finally, I admitted the truth — my pain has been incredibly intense, my leg incredibly weak. If my family and I wanted to take this trip, I had to use a wheelchair.
There was one part of me that was heartbroken. All I could think of were the negatives — I’m 47 years old and, for this trip anyway, an ambulatory wheelchair user. My mind went down that scary, dark path — thinking ahead to future trips, picturing myself with increasingly limited mobility.
I made an effort to reframe how I thought about the facts — I’m 47 years old and not letting this chronic illness and my chronic pain stop me from living my life the way I want to live it. I wasn’t going to stay home because I needed a wheelchair. I adapted and figured out how to make this trip work for my body as it is now.
I don’t know. Maybe we’ll look back at this D.C. trip as one of those defining moments — the start of travel requiring a wheelchair.
But maybe not.
We’ll have to wait and see next year.
P.S. Lots more to come about this incredible trip. We spent 6 days, 5 nights away from home. We visited museums and memorials. We admired and appreciated. We listened and learned.
I read for many reasons. To be entertained and inspired. To learn and grow and find comfort in someone else’s words.
I write for many reasons, too. Which is why I was curious to read Write For Your Life by Anna Quindlen.
While many people might not consider themselves writers, Ms. Quindlen believes everyone has a story worth writing down. I agree.
In addition to Ms. Quindlen’s words, the book also has some writing-related quotes as well as some prompts for writing exercises. Here are some of my favorite bits from Write For Your Life:
“We write to taste life twice, in the moment and in retrospect.” — Anaïs Nin
“While you have to mentally re-create what happened on a phone call — ‘Did she really say that?’ — you can actually reread a text. But much of that tech prose online felt so spontaneous as to be slapdash, unexamined. It’s why people will often say, when reminded of an email or an online post, that they can’t really recall writing it. Every day, unthinkingly, our lives can slip through our fingers in a cascade of computer code. Texts are like footprints in sand. By evening the tide has come in, and we are left alone.”
“The urge to get it exactly right often stands between you and beginning. ‘Don’t get it right, get it written’ demands composition first, cleanup later. The paralysis of perfectionism is a terrible ailment that can seep into so much of our daily lives. In writing, what it leads to is an empty page, and an empty page is neither good nor bad. It’s nothing. Honestly, if the choice is between an imperfect something and nothing — well, that’s easy, isn’t it? Get it written. You can get it right later.”
“Something written by hand brings a singular human presence that the typewriter or the computer cannot confer. There’s plenty of good writing done that way, but when you simply glance at the page, it could be the work of anyone. But when you’ve written something by hand, the only person who could have done it is you. It’s unmistakable you wrote this, touched it, laid hands and eyes upon it. Something written by hand is a piece of your personality on paper. Typed words are not a fair swap for handwriting, for what is, in a way, a little relic of you.”
“I’m not sure writing about things always makes us feel better, but perhaps it sometimes does make loss, tragedies, disappointments more actual. It can turn them into something with a clearer shape and form, and therefore make it possible to see them more deeply and clearly, and more usefully turn confusion and pain into understanding and perhaps reconciliation. On paper our greatest challenges become A Real Thing, in a world in which so much seems ephemeral and transitory.”
“Butt in chair. That’s the piece of direction I give to anyone and everyone who wants to write, who is thinking about writing, who is asking how it’s done, who is fearful of and intimidated by the act. It’s not poetic, and it doesn’t bespeak inspiration. What it does suggest is a way into what is not a mystery but a process, a way into the story of yourself.”
Please note: I am including a link to buy the book that I’m highlighting this week. If you use my link, I do make a small commission on your purchase at no additional cost to you. I am working with Bookshop.org which also sends a portion of the profit to support local, independent bookstores.
WendyKennar.com 