The Taste of Anger

There are some books that stay with you, long after you finish reading. Books that take up residence in your heart and mind. Books that make you feel, deeply, as if you have been an active participant in the story told on the pages. Books that are so rich with sensory details and vivid images, you did more than read the words; you saw the scenes play out in your mind.

The Taste of Anger: A Memoir by Diane Vonglis Parnell is one such book.

I must be honest. Diane is a friend of mine. We met several years ago at a writer’s retreat. We were classmates in a UCLA Extension Writers’ Program class taught by the late, lovely, Barbara Abercrombie. And after the class ended, Diane and I remained in touch for quite some time, emailing pages to each other, reading the other’s work and offering incredibly valuable insights and feedback and support. 

And now, the hard work, the years of writing and re-writing have culminated in the publication of Diane’s powerful memoir, The Taste of Anger

I must warn you, Diane’s book is not easy to read because of its subject matter — her incredibly abusive childhood. At the same time, Diane’s book is an important read, because it serves as a strong reminder — you never know what someone is dealing with simply by looking at them. You cannot always easily see the scars and pain someone deals with on a regular basis, which is something her book and my future book have in common.

Diane’s memoir is written from the point of view of her childhood self. We see the family, the school, the farm from young Diane’s point of view. And young Diane is observant, vigilant, and on high alert.

I am choosing not to share any passages that depict violence and abuse, because I understand how difficult and painful reading such passages may be for some. Instead, I am sharing a few passages that highlight the masterful descriptions and the sensory details that Diane uses throughout her memoir.

“In the kitchen, she rolls my hair in small silver curlers. They pinch so tight against my scalp that when I lay my head on my pillow, it feels as though I have stones tied all around my head.
“The entire family is up before the sun the next morning, getting ready for 6:30 mass. I ask Kathy to take my curlers out because she is gentler than Mom, unrolling them slowly so they don’t tear my hair out. When she’s done, I shake my head side to side, enjoying the tickle of the curls bouncing lightly against my face.”

“I watch a fly circle and get caught in a spider web in the corner. The fly struggles, making a loud bzzz bzzz bzzz, like an SOS signal, as the spider races across the web, pounces on it, and then rolls it in silk, placing it at the edge of the web next to another cocooned victim. I feel like that fly. If I go bzzz bzzz bzzz, will anyone hear the alarm? Will anyone come to save me?”

“Willy is a farmer from the next town over, jolly in a Santa kind of way, with the stub of a cigar always stuffed between the gap in his gray front teeth. His face is white-whiskered, his glasses held together at the bridge by black tape. He pulls his large body out from behind the steering wheel, steadying himself with a wooden cane. A hairy pink belly hangs visible beneath a tattered, ill-fitted T-shirt.”

“Mrs. Walters brings her chair from behind the desk, and we gather on the floor around her for Reading Time. It is my absolute favorite part of the day, and I sit right next to her, soaking in every word. She reads stories of tiny fairies and giants, a cat with big boots. Today we hear about a talking bear that gets lost in a train station. She turns the book around to show us illustrations of a chubby bear in a floppy hat. These vivid stories open doors to new worlds — happy worlds, magical words — and I fall earnestly into every one of them. Only during Reading Time do I truly forget about my life at home. I fight the urge to wrap my arm around my teacher’s leg, to lean my head against her knee. If she’d let me do that, and if she kept reading, I think I could close my eyes and stay right here for the rest of my life.”

“I am afraid of her, but I also like her orderliness, her clear rules, and the high expectations she sets for each of her new fourth-grade students. She scrutinizes our handwriting and then makes a special ceremony of passing out pens to the students she deems have graduated from the pencil. I am one of the first to get my very own blue pen, and when she calls my name, I blush and beam as I make my way to the front of the classroom where she holds it out to me. A gift to acknowledge my hard work. 
We have spelling bees and write essays. Sister Joan challenges us to think and to express our thoughts, and through her guidance, I am beginning to see that the world is much bigger than just me and my life on the farm. Best of all she reads to us every day, further fueling my love for the subject.”

“At home after supper, I bring my uniform downstairs to show my mother. She purses her lips, holding the jumper out in front of her, scrutinizing the hole. I want to scream at her for letting it get this bad, but we have been conditioned not to speak our thoughts or express our feelings at home, so mine are always clanging around inside of me like a handful of nails tossed in a dryer and set to tumble.”

One last note: I am so honored that Diane included me in the list of friends and supporters she mentions in her Acknowledgements. Thank you, Diane! I am so proud of you!

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 Am Tired.

Eleven years ago, my personal essay “Do What You Need To Do” was published in the anthology Lessons From My Parents:100 Shared Moments that Changed Our Lives. I wrote about the example my parents set for me, the idea that sometimes you just have to suck it up, do the hard thing, keep going. 

That’s largely how I have lived my life. Doing the hard thing whenever I have to in order to achieve my goal — whether it was commuting on public buses for most of my college years (a roundtrip commute that took 3.5-4 hours a day, on six buses a day) or working as a kindergarten teacher during the day with an emergency teaching credential and taking online classes at night to earn my full teaching credential. 

It’s pretty much how I go about my day. Things need to be done. I just need to do them. 

Except, I’ve come to the slow realization that I just don’t think I can keep doing that. 

Because — I am so tired. 

I am tired of waking up each morning, feeling unrested. Sticking my feet into my slippers as the alarm goes off, wondering how I’m going to do it. How I’m going to wake up, get dressed, make my son his breakfast, take him to school, and function throughout the day.

I am tired of not reading as much as I’d like to each day. Which as I write that sentence, I realize it’s not completely accurate. I do read a lot each day. I read emails and text messages, newsletters and first drafts. I just don’t always take a half hour and sit and read my book. Sometimes it’s because I’m in pain, and I can’t get comfortable to sit for an extended period of time and lose myself in the words on the page. Sometimes it’s because I feel there’s too much work that needs to be done for me to take a break and read. When I read in bed shortly before I turn off my bedside lamp for sleep, I inevitably start to doze, and the paperback book slips from my fingers and startles me as it falls against me. (One of the reasons why I generally prefer paperbacks to hardcovers.)

I am tired of looking at myself in the mirror and not fully recognizing the woman looking back. I take stock of the physical changes — hair loss, weight gain, swollen ankles — and realize I have no idea which of my ailments is contributing to each symptom. For example, the hair loss I’m noticing could be due to one of my medications, or my longer hair, or menopause. 

I am tired of clicking on my inbox and feeling so far behind in reading my emails. How did I become someone with three hundred unread emails? Seemingly overnight, I have multiple Substack notifications, emails asking for donations for Unicef, Save the Children, and Make-a-Wish Foundation, and emails regarding the latest sale at Bath and Body Works. I want to support other writers and read their newsletters, I want to contribute  funds to worthwhile organizations, and I want to buy candles when they’re on sale. But it’s so much. 

I am tired of feeling like I’ll never catch up. The list I keep of podcasts I want to listen to (Moms Don’t Have Time to Read Books with Zibby (Owens), Kate Bowler’s Everything Happens, Write-Minded with Brooke Warner) just keeps growing. I listen to one episode over the course of a couple of days while I do my physical therapy stretches and exercises, but in that time, I have added another two podcasts to the list. I sit on the floor in my writing room, looking at all the un-read books I have, just waiting for me, and realize this cubby of mine is almost completely out of space. And yet, I came home with another novel I picked up at the Little Free Library I passed yesterday.

I am tired of waiting. Waiting in line at CVS, waiting on hold to speak to a representative regarding my medical insurance, waiting to speak with someone in my doctor’s office to schedule my next appointment. 

I am tired of the bottles of pills on my kitchen counter. Lining up the bottles based on when I take them — breakfast, lunch, and/or dinner. Keeping track of refills, making sure I have enough to get me through the next several days until the law says CVS can refill my pain medication. Tilting my head back so the large calcium supplement, the most recent addition to my daily pills, will slip down. 

I am tired of heating pads and ice packs. I am tired of propping my left leg up on a pillow. 

I am tired of being in pain. Every. Single. Day.

I am tired. 

Friends, I know it’s not just me. I know many of you reading this post have your own laundry list of illnesses, daily stressors, work-related tasks that you’re tired of also. 

What do you do when it continues to build and you feel like you’re standing in quicksand and being swallowed up by it all? 

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.

A Book and Its Cover

“Don’t judge a book by its cover.”

We’ve all heard that bit of advice. (And if you’re interested, when I Googled it, I learned the origin of this expression is credited to a longer statement that conveyed the same meaning in George Eliot’s The Mill on the Floss.)

Nowadays, the adage is used broadly and is applied to many things beyond books. For instance, you can’t know a person’s true heart or friendliness by simply looking at them. You don’t always know if you’ll enjoy a meal simply based on how it looks on the plate. 

While I absolutely agree that you can never know someone’s full story or what they’re going through simply based on appearances (including my own invisible disability), when it comes to books, I think you absolutely can, and should, judge a book by its cover. 

When I scroll through books offered in a Goodreads Giveaway, I have limited information available to me. I have the title, a small photo of the book’s cover, and the first few lines of a short summary of each book. And I absolutely look at that cover image first. 

A book’s cover is an advertisement and a promise for what is included within the pages of that book. 

A dark cover featuring a sharp knife? I’ll skip that one, thank you. 

A pink cover with a woman and man facing each other? I’ll stop my scrolling to read the blurb. 

A green cover with holiday decorations? I’ll read that blurb also.

A black and gray cover with a set of eyes peering back at me? That’s one to skip.

While I’m not at that stage yet, I do sometimes think ahead and try to envision the cover of my memoir. I picture lavender or some other shade of purple. I think of sunflowers, my favorite flower, and a symbol for the chronic illness community — something I didn’t know until fairly recently. 

“The Hidden Disabilities Sunflower is a simple tool for you to voluntarily share that you have a disability or condition that may not be immediately apparent – and that you may need a helping hand, understanding, or more time in shops, at work, on transport, or in public spaces.”

I’m curious, readers. How do you decide which book to pick up at the bookstore? To check out at the library? To enter a giveaway for? Does a book’s cover play a part in influencing your decision at all? Let me know in the comments.

And, if you have any thoughts regarding my own future book cover, feel free to leave those in the comments section, too. 

Super Bloom

I recently finished reading Megan Tady’s novel Super Bloom.

It’s a novel about friendship and reinventing yourself when life doesn’t follow the path you thought it would. 

It’s a novel about writers and romance books. 

It’s a novel that offers a behind-the-curtains look at the massage industry as told from the point of view of our main character, Joan, a massage therapist.

It’s one of those novels that keeps you turning pages, because you just have to find out what happens next. And for me, it started with the first sentence — “I harbor a secret fantasy to go apeshit at work.” 

Here are a few of the passages that caused me to pause and mark the page with a sticky note and a yellow highlighter:

“…I love that muscles speak their own language and I can spend hours coaxing them to reveal themselves to me.”

“Instead, I imagine my clients’ private lives and then write down the stories, envisioning their secrets and passions and hurts based on the slope of the lower back, the elasticity of skin, the rigidity of muscles. My hands pass over bodies as if I’m reading braille, and their worlds unfold.”

“My smile is my best asset, looks-wise, though it’s as shy as a shadow-spooked groundhog. When my full smile emerges, it reveals one crooked tooth that appears to be leaning out of a Rockets chorus line to see what everyone else is doing.”

“It’s been sixteen years, but I still remember writing this thing at my parents’ kitchen table. They were both at work, and the house was quiet. As the words flew out of me, I experienced an oncoming rush, as if I were on a roller coaster inching to its highest peak, the noise of the wheels grinding against steel, wind whipping my hair, until I crested, and from there, for a split second, I could see for miles, a perspective where everything made sense, the entire story coming together before I plummeted back toward Earth, my stomach in my chest, my chest in my throat, my thrilled yell not audible from below.”

“I’m fighting for my livelihood by working on The Project — paying off my debt, keeping my day job. But when I write for myself, I’m fighting for my life, because remaining debilitated, angry, or bowled over without a moment’s notice by sadness is no way to exist.”

“Maybe, just maybe, I can still be a writer. Maybe it’s not too late for me. Don’t we all have dormant potential coiled up inside of us? Greatness lying within, waiting to be tapped?
“Just like Samuel’s super blooms. Seeds holding out for perfect conditions: soil, sun, rain.
What I need is a hefty dose of willpower. A readiness to try my hardest and possibly fail. That’s the only way to bloom.”

“Was it the writing?
“Or was it simply that the forces of nature couldn’t destroy me? That nothing could stop me from pushing up to the surface, because something innate in me wanted to survive. Not only survive but transform, so that I was a better copy of my original self.”

Dear Readers, Has anyone else read Super Bloom? Were any of my favorite lines also your favorite lines? Feel free to share passages that you loved!

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.


A Small, Attainable Luxury

I’ve written before about one of my favorite not-at-home writing spots. (If you missed it, you can click here to read my post, “A Bit of Serendipity.”)

This week, I have a confession to make regarding this cafe: It is here, that I order the most expensive blended mochas I have ever had. 

I’m not sure why these drinks are so expensive, or why they cost more than their counterparts at Starbucks, Coffee Bean, or my local neighborhood indie coffee spot. The price of the beverage is high enough that it initially gave me reason to pause and wonder if I should keep spending my time, and my money, here. 

And the answer is yes

Yes, I most definitely should keep spending my time and money here at this cafe. 

Here’s why:

First off, I enjoy the blended mocha. I like that I can drink it slowly, throughout my writing time, and savor the yumminess. I like the chocolate swirls on the inside of the cup. It makes the drink look fancy, and not like your standard blended mocha. 

I appreciate the “writing cocoon” I create for myself at this cafe. Unlike my local neighborhood cafe, I don’t run into neighbors here. I don’t spend any of my writing time chit-chatting with others. I come here to read and write, and that’s what I do. Distractions are minimal and are generally limited to occasional loud talkers. 

I’m productive at this cafe. I set up my writing space, and I get to work. And by the time I pack up to go home, I am so pleased with my output. 

And, there’s something else. Something I read in Tara Schuster’s Buy Yourself the F*cking Lilies

Buy the fucking lilies.  You are worth seven-dollar lilies. You are worth the thing that instantly makes your life better. I’ve heard people talk about their favorite exercise class this way. I’ve heard people talk about an order of guacamole with their tacos this way. I’ve heard people talk about the ten-dollar, ten-minute massage at the nail salon this way. That small, pleasurable thing that makes you feel like you are treating yourself — do not deprive yourself of this. Buy the fucking lilies, take the class, order the guac, get the massage.”

“Above all else: You are worth the lilies. The small, attainable luxury of lilies is not something to stress about, it is not something to deny yourself, it is something to make plans for and embrace. Small things that make you happy ARE a part of taking care of yourself.”

“Seven-dollar lilies won’t ruin you and they won’t make you poor; they will make you stronger. You are stronger when you treat yourself well.”

Readers, what are your “lilies”? In addition to blended mochas, I would add flowers (usually from Trader Joe’s), candles, and books as other “small things” that make me happy. I’d love to know what your “small, attainable luxuries” are. Feel free to share in the comments. 

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.

The F Word

I took this picture a few days ago, late afternoon, after doing some of my physical therapy stretches on the bed.

I don’t usually have a problem falling asleep. 

Quite the opposite, actually.

As soon as I turn off the lamp on my bedside table, after another unsuccessful attempt to read a few pages before bedtime (I tend to either drop the book and lose my place or read a bit but then the next day have no memory of what I had read), I fall asleep. 

Usually, I wake up at least a couple of times each night. Though lately, I have experienced a few nights when I only woke up once. And there were even a few nights that I slept straight through. 

Yet, regardless of how many wake-ups I have each night, I am not waking up feeling rested. 

Again, it’s quite the opposite.

I wake up feeling drained. I’m not recharged and ready to take on the day at all. But, I don’t have a choice. The alarm goes off, and it’s time to get going. I need to get up and get dressed and get the show on the road, because my son needs to get to school. I have work to do. Which means I’m forced to function on a blend of automatic pilot and a fight-through, keep-going-no-matter-what, high level of perseverance.

Plus, I have also noticed this unrested feeling isn’t just happening during the week, when wake-ups are earlier and days are busier. Even on a random Sunday, when we have nothing planned and no alarm waking anyone up, I don’t naturally wake up feeling oh-so-rested. 

Doctors don’t often ask about my sleep; however, during my last several follow-up appointments, I have mentioned it to them. I do my best to describe the overall slowness I often feel upon waking. The way my eyelids feel heavy. The feeling of starting the day at a deficit. And because my labs are coming back pretty consistent, because there are no red flag markers, no medical professional seems overly concerned about my tiredness. 

The other day, when I stood in front of the mirror and stared at the dark circles under my eyes, I had an aha moment. 

It seems so obvious, now, but it really didn’t occur to me that this extreme tiredness, this fatigue, is a part of life with chronic pain. This is not unique to me and my UCTD (undifferentiated connective tissue disease). In fact, in terms of my inflammation markers, my numbers have been down. My autoimmune disease is somewhat stabilized, you might say. Which means my medications are working and doing what they’re supposed to do. And yet, I feel awful — every single day.

Because this is not tiredness that goes away with a couple of nights of eight hours of sleep. 

Because this is fatigue, a whole different level of extreme tiredness. 

I don’t usually talk about my exhaustion, and I certainly haven’t written about it. But, I know how important it is to share our authentic experiences, to connect with others who, unfortunately, “get it,” and understand exactly the situation I’m describing.

The other night at dinner, after it was my turn to share some of the highlights from my day, my husband commented that I had gotten a lot done. 

“You’re right,” I said. “Imagine what I could do if I felt rested?”

Pain Awareness Month

You can't see my pain, but it's there.

September is Pain Awareness Month. It’s a topic I have written about before: 

In 2020, I wrote about how common it is for my pain to fluctuate, which is why I so dislike the traditional 1-10 pain scale.

In 2021, I again wrote about the difficulties in using a traditional pain scale to describe my chronic pain. (Plus, this post has one of my favorite pictures of myself – because I’m holding a bunch of bright, beautiful sunflowers – my favorite flower, and because that photo makes me think back to that fun family day.)

In 2022, I wrote about the randomness of my pain; the fact that I can sit and watch my son at his first Rubik’s Cube Competition and out-of-nowhere suddenly need to step outside because of an intense leg cramp.

In 2023, my son inspired my Pain Awareness Month blog post (as he’s inspired many of my blog posts and personal essays over the years).

Which brings us to this year’s post:

For the last year or two, each time I see my rheumatologist I have told him how much I struggle to get through my day. I have given him concrete examples to demonstrate that my chronic pain has worsened, my energy levels have lowered, and my fatigue has increased. I have told him that my current pain medications were not enough, yet he refused to alter my dosage or prescribe anything else. Finally, he referred me to a pain management doctor. (This isn’t the first time I’ve seen a pain management doctor, but it is the first time I have been seen by this particular doctor.)

At the first appointment with the pain doctor, back in April of this year, I walked in with a fair amount of skepticism. How many times have I had to share my story over the years? How many times have I tried to convince doctors that regardless of how I look or how much I tell you I still do each day, I am in considerable pain every single day? I didn’t want to have to sell myself, convince this new doctor that my pain was worsening, that my list of activities I could no longer do was growing, and I was scared because I truly didn’t think my current lifestyle was sustainable.

Something completely unexpected happened during that April appointment — after reviewing my in-take forms and my current medications, the doctor looked up from my chart and looked right at me. 

“You’re not on the right medication. What you’re taking now isn’t going to help with the kind of pain you’re describing. You definitely need something stronger,” he said. 

I was momentarily shocked. Cue the party favors and the large round of applause. The doctor’s statements, his belief in me and my pain, were huge. My chronic illness friends reading this know that this is not always the way a doctor’s visit goes. 

Since that first appointment, we’ve tried different medications and different dosages, and I think we’re getting closer to finding the right combination for me. 

At the same time, the doctor has been honest with me. 

“Nothing is going to completely get rid of your pain. The goal is to bring your pain levels down. Way down,” he said.

We’re working on it. 

So this year during Pain Awareness Month, if I may, I offer this suggestion — believe someone when they tell you about their pain. You cannot always see pain. You don’t always know what someone is going through or dealing with simply by looking at them. So give them the benefit of the doubt. Treat everyone with a bit more patience and care. Because whether it’s physical pain or mental pain, chronic pain or temporary pain, everyone is dealing with something.

The American Library

By now you know I’m a book person. 

I’m even one of the lucky ones — during college I worked in a public library for several years. I only left that job because I graduated with my Bachelor of Arts degree and had secured a teaching position. (And a huge, life-changing bonus — one of my closest friends is a woman I met at the library. She still works there, and we’re still friends.)

So, naturally I had been wanting to visit The American Library by Yinka Shonibare CBE RA at the Skirball Cultural Center in Los Angeles. (If you’re in L.A., the exhibit closes on Sunday, September 1st, so don’t delay.)

From the Skirball’s website:

“This exhibition creates a library setting where the shelves are filled with more than six thousand books individually wrapped in Shonibare’s signature Dutch wax-printed cotton textiles. Each book bears a name on its spine of a notable American individual. First- and second-generation immigrants and Black Americans affected by the Great Migration are featured alongside one another.”

Six thousand books, wrapped in colorful, eye-catching textiles. It’s rather stunning — the bold colors, the row after row after row of books.

Also from the website:

“An imaginative portrait of a nation, The American Library by internationally recognized artist Yinka Shonibare explores how ideas of citizenship, home, and nationalism hold complex meanings.”

The exhibition is meant to spark a conversation about immigration, about culture, about a sense of belonging. 

And while all that is quite powerful, I found myself scanning the shelves, imagining what it would look like, and what it would feel like, to see my name on the spine of a book (though not a book wrapped in vivid textiles) . 

Years ago, when my high-school-aged son was a little guy, a package arrived containing an anthology which included one of my personal essays. I was quite excited for the book to arrive, and I remember my son helping me carefully open the package and remove the book. 

He looked at the front cover, flipped it around to check out the back cover, looked at the spine, and told me he couldn’t find my name. I explained the book was an anthology, a collection of many stories and poems written by many different people, and my name was inside. We looked at the Table of Contents and found my name. We turned to the page where my essay began and found my name under the title. We found my name in the back of the book, where each contributor’s biography was listed. And I remember telling my son that for now my name was on the inside of books, but that one day my name would be on the outside — on the spine and on the front cover as the sole author of the book. 

I’m still working to achieve that goal. 

I continue to query agents. I continue to search for that one person who will grant me that one “yes,” that will be the gatekeeper to help me move along to the next stage of my writing journey — the publication of my memoir-in-essays. 

Maybe all this sounds selfish. My husband and I went to the Museum, stood among this striking, immersive art installation, and my thoughts turned to my own future book.

Then again, that’s the power of art — the way it can touch each individual in such a personal way. 

Questions and Clues

I sign up for many writing-related webinars (mostly free, though some are fee-based), and I like to watch interviews with authors on YouTube. I consider myself a life-long student, and have found the writing community to be very generous when it comes to sharing information and advice and encouraging other writers. 

I attend these webinars and watch these videos in my quest to learn more about building a writing career. As I continue to query literary agents, I have been learning about establishing and maintaining an author newsletter (something I plan to do in the future, so stay tuned!), creating a readership, and the different types of marketing options available for writers. 

A couple of weeks ago, I watched two different writing-related videos, featuring two different authors, and both videos left me with questions I haven’t been able to stop thinking about.

One author was asked how she shows herself self-compassion. I thought it was an interesting question for an interview. The memoir author spoke first of acknowledging the difficulty in writing about painful experiences. Writing memoir, particularly writing about a traumatic experience, requires a very different mindset than writing a scene in a romantic-comedy, for example. The author spoke of giving herself breaks, and being very intentional when it came to planning her writing time. She knew she would need to strategically plan when and where she’d engage in this writing, and then give herself the space and time needed to rest afterward. 

In another interview, a different author was asked what she does to nurture her resilience.

The questions stumped me. Me, who is seemingly always writing or thinking about writing, was at a loss for words. 

Do I show myself self-compassion? Probably not nearly as much as I should. 

Do I nurture my resilience? Honestly, I’m not a hundred percent certain what that means or how that would look. 

But that’s what I’ve been thinking about. Those are questions that I can’t seem to let go.

Then over the weekend, as I tried to make my way through a full inbox, I read agent Kate McKean’s latest Substack post titled, “Compulsory Rest.” This sentence stood out to me: “The universe is going to do what it’s going to do—and all you can do is make sure you’re taking care of yourself the best you can.”

She’s completely right. I like to think I’m in control, with my lists and schedules and dinner meals planned out a week in advance. But really, the truth is, I’m not at all. There is actually little I can control, and when it comes to my own body, there’s really very little I have control over. 

It’s been hard. “It” meaning life, though I hesitate to put that in writing. Thankfully, my family is healthy and safe. We are not worried about having enough food in the fridge or a roof over our heads. We are lucky, fortunate, blessed in so many ways. 

And yet, life has been hard.

I feel like these interview questions and this Substack statement are like clues. Clues from multiple sources and multiple people. Clues I am paying attention to. 

But, also, clues I’m not  entirely sure what to do with or how to use them as a springboard for changes in my daily life.

Anyone else feel that way?

My Word For the Year – An Update

Photos allow us to choose what we share. What you don't see in this photo is my wheelchair. It was the first time I had visited The Huntington Library, Art Museum, and Botanical Gardens using my wheelchair.

Back in January, I wrote a blog post about my word for the year — Share. (If you missed it, you can click here to read the post.) 

2024 certainly isn’t wrapping up just yet, though 2025 calendars keep arriving in the mail. However, we are about three-quarters of the way through the year, and it occurred to me that now would be a good time for a check-in of sorts.

In terms of my writing, I absolutely do share. I consistently write this weekly blog. I regularly write personal essays and submit them for publication. I began querying literary agents in March and continue to do so, searching for that one yes from the right person who will serve as an advocate for my memoir-in-essays and assist me in the publication of my first book. 

When it comes to other areas of my life, my sharing is less consistent. Oftentimes, I revert back to predictable patterns of behavior of holding my tongue and trying not to make things more difficult/complicated/unsettling for those around me. I admit I don’t always honestly, and completely, share how I’m feeling — physically or emotionally. 

Like many people who live with chronic illness and chronic pain, I have learned how to fake it. I know how to downplay my pain so as not to make those around me uncomfortable. I know how to present as a person fully in control of a situation, even though most of the time my body feels very much out of my control. 

Because let’s face it. I don’t often have good news to share when it comes to my pain level or energy level. And I realize it’s frustrating for my loved ones to know I’m uncomfortable (which is putting it mildly, again me not completely sharing) yet there’s not a whole lot they can do to make it better. 

I think that’s one of the reasons I’m a writer. Generally speaking, I have always found it so much easier to share through my writing than through conversations. 

So I continue to write and am grateful I can share here and on my Instagram account, which I have found has an incredibly supportive chronic illness community. Thank you, readers, for being on this journey with me. 

How are you doing, dear readers, with your words for the year? Feel free to share in the comments.