Author: Wendy Kennar

A Small, Attainable Luxury

Posted on by Wendy Kennar

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

Posted on by Wendy Kennar
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

Posted on by Wendy Kennar
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

Posted on by Wendy Kennar

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

Posted on by Wendy Kennar

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

Posted on by Wendy Kennar
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. 

Wow, No Thank You.

Posted on by Wendy Kennar

The older I get, the more I realize how lucky I was to grow up and see myself represented in many of the books I read and movies I watched. (Though the Wakefield twins of Sweet Valley High were blondes and not brunettes.)

On the surface, you might not think author Samantha Irby and I share much in common. She is a Black woman living with her wife in the midwest. Plus, she curses a lot more in her writing than I do. 

Yet, Samantha Irby is a member of the club I belong to. The club, in fact, many people belong to — the chronic illness club. Ms. Irby lives with Crohn’s Disease.  

I recently finished reading my first Samantha Irby book, her essay collection titled Wow, No Thank You. And you’ll notice from the photo that my copy is full of sticky notes. 

Here are just a few of the passages that stood out to me, resonated with me, and/or made me laugh out loud:

“Mixtapes were the love language of my youth. If you got one from me, that shit was as serious as a marriage proposal. Maybe because they were so time-consuming to make? I had a painstaking process I went through before I put a mix together.” (Side note – when we were dating, I made my now-husband a mixtape. I agree – it was a big deal to make a tape for someone else.)

“… and I guess what I’m actually saying is that, sure, I move this body around every day but I’m not actually in charge of it, and I have no idea and no control over anything that happens within it.”

Pretty much, the entire chapter titled “hung up” could have sticky notes on each page. Ms. Irby’s observations and comments about the “five-hundred dollar computer in my pocket” were so entertaining and so spot-on.

I also found the entire chapter titled “body negativity” to be amusing and fun to read. 

The chapter starts with: 

“I have been stuck with a smelly, actively decaying body that I never asked for and am constantly on the receiving end of confusing, overwhelming messages for how to properly care for and feed it.”

And there’s this passage:  

“Your neck is supposed to be firm and long, but I thought that was only asked of penises. Why does my neck have to do anything other than hold up my head? I do not, and will never, use any specific treatments for my neck. I cannot be bothered to care about my neck. Of all the things I have to check off this endless list, ‘neck maintenance’ is not going to be one of them.”

“I don’t treat my Crohn’s like it’s an albatross around my neck, like I’m laboring under the weight of this oppressive disease.”

“It’s a serious topic that can be dealt with in a really funny way while also repping for the chronically ill and constantly medicated, like me.”

“… it would mean a lot to me to put chronic illness in people’s faces, especially the silent kind that you might not even know a person is struggling through. I bet if you met me on the street, you wouldn’t automatically think ‘sick,’ but if you looked at my CT scans you would, and I want to represent for all my people taking twelve pills a day with bald joints and intestines lined with scar tissue.”

Readers, have you read any of Samantha Irby’s books? I’d love to know what you thought of them. 

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 Bit of Serendipity

Posted on by Wendy Kennar
I took this photo during last week's writing session.

Last week I spent time at one of my favorite not-at-home writing spaces; a cafe serving a yummy ice blended mocha, and providing many tables and chairs on a large patio with plenty of shade. 

This week, I wanted to share something that happened during last week’s visit.

Two women sat at a table close enough to me that I could overhear bits and pieces of their conversation without even trying. It felt serendipitous that of all the available tables, these two women sat near me. After all, I was sitting off to the side, near a wall, trying to distance myself from any loud chatter and distractions. 

Within a few minutes, I learned the two women were middle school science teachers. I heard them talking about sixth grade, about sedimentary rocks and fossils, about a project requiring a long roll of adding machine paper. (And I admit to feeling old when one of the teachers had no idea what adding machine paper even was.)

These two teachers spent their own time lesson planning. These were “off-the-clock” conversations. Because that’s what teachers who are passionate about teaching do. Your teacher brain is never really off, and teachers don’t actually get “the whole summer off,” as many non-teachers believe. Teachers are always working in some shape or form. It brought back memories of my own lesson planning days and the blended mochas my closest teacher friend and I used to enjoy while brainstorming and planning for our fourth graders. (I’m thinking of you, Nance!)

As if that wasn’t enough, after a bit of quiet individual work time, the two teachers began chatting again. I heard different phrases this time — it’s so lonely, I look fine on the outside, many people don’t get it.  

I learned that one of the teachers lives with an invisible illness. The other teacher’s partner lives with an invisible illness and was asking questions about how to best support a chronically ill loved one. 

I momentarily sat there in shock. 

What were the odds? 

Not only were these two women teachers, they were also among the target audience for my memoir! (My target audience includes those living with chronic illness, especially invisible illnesses, both physical and mental, as well as friends and families of those living with chronic illness.)

That day at that cafe, I had spent a portion of my writing time researching literary agents to query my memoir-in-essays. 

And then these two women entered the outer edges of the writing cocoon I create for myself at this cafe. 

I took it as a sign.

Disability Pride Month

Posted on by Wendy Kennar
Parasailing in Maui with my son, June 2022

July is Disability Pride Month. The designation coincides with the anniversary of the Americans with Disabilities Act (ADA) being signed into law, thirty-four years ago. 

In prior years, I’ve written about Disability Pride Month. (You can click here to read my post “There Is No Shame” from July 2021, and click here to read “Disability Pride Month Reading” from July 2022.)

This year, however, I’m having a really hard time putting into words how I feel about this month and how it impacts me. Partly because within the last couple of years, my physical abilities have decreased, and my dis-abilities — things I can no longer do or only do with extreme pain — have increased. 

I live with an autoimmune disease that most people have never heard of, that most healthcare providers don’t fully understand. A chronic illness that has no cure. And it is this part of my identity that is the catalyst for my currently-querying memoir-in-essays. 

One day, when you pick up my memoir in your local independent bookstore or public library or multi-floor Barnes and Noble and begin reading it, you will find that my disability identity is only a part of my story. I’m so much more than my body and how it can and cannot function. 

I am Wendy Kennar.

I am a white woman married to an African-American man. 

I am the mother of a mixed-race son.

I am a college graduate, the first in my family.

I am a ketchup-using tomato-disliker.

I am a morning apple juice drinker.

I am a night shower-er.

I am a handwritten list maker.

I am an envelope decorator. (Which means I am someone who still mails cards and letters the old fashioned way, with a stamp on the envelope.)

I am a save-the-avocado-for-last salad eater.

I am a chocolate ice cream only consumer (except if I’m eating a Vanilla Soft Serve ice cream at McDonald’s, which is the only thing I eat from McDonald’s.)

I am a daughter. A pen pal. A friend. A neighbor. 

I am a Los Angeles native.

I am generally a no-crust-for-me pizza-eater.

I am a woman who has never spent any time in the snow. 

I am a woman who owns more pairs of earrings than shoes. 

I am a curious person, who wonders about all sorts of things. (Why do you walk a red carpet at awards shows? Why red? Why not blue? Or purple?)

I am adventurous. (I have gone parasailing twice, ridden in a hot air balloon twice, and gone zip lining once.) 

I am a disabled woman. 

But that’s not all I am. 

The Word Collector

Posted on by Wendy Kennar

My sixteen-year-old son and I spent some time in his bedroom the other day, re-organizing his bookcase. (The same white Ikea BILLY bookcase that used to be in my childhood bedroom many years ago.) During college, I worked in a public library; I’m happy to help when someone wants to re-organize a bookcase.

Many of my son’s once-favorite picture books had sat on those lower shelves for several years now, largely untouched and unread.

“I don’t want to donate them, but I don’t want them out on my bookcase,” he said.

I understood.

There are some books that are so firmly rooted in memories that you can’t possibly imagine parting with them. For our son, that included Curious George books and a large stack of Todd Parr books. 

From his stacks, we did find a few to donate, and I found one I have now placed on my bookcase — The Word Collector by Peter H. Reynolds.

I could mention the book’s charming illustrations. 

Or the short and sweet author’s note on the inside of the front cover. 

Or the encouraging author’s note at the back of the book: “Reach for your own words/ Tell the world who you are/ and how you will make it better.”

But really, I’m keeping this book because of sentences like these:

“Jerome began stringing words together.
Words he had not imagined being side by side.
He used his words to write poems.
He used his poems to make songs.
They moved. They delighted.
Some of his simplest words were his most powerful. 
Jerome eagerly collected more and more of his favorite words. 
The more words he knew the more clearly he could share with the world what he was thinking, feeling, and dreaming.”

I am proud to be a word collector.

Readers, do you have any children’s books you keep near your writing space? Any children’s books you just can’t part with? Please share. 

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.