My Illness Does Not Define Me

“My illness does not define me.” 

I recently came across that statement in The Healing Journal: Guided Prompts and Inspiration for Life with Illness by Emily Suñez.

I’ve read that sentence before — in other books, in other posts. For some reason, though, when I read it this time, I really lingered on that page. I just couldn’t stop thinking of those words and what they mean. Maybe it’s because we’re in this in-between time of reflecting on a year that is rapidly coming to an end while daring to look ahead with hope to the new year. 

“My illness does not define me.” 

It’s true. I don’t think anyone who knows me well would use words like ill or disabled to describe me. And that’s probably because I spend an awful lot of energy trying to act like my illness is not front and center in my life. 

But, I don’t think that’s particularly helpful either. I try to ignore my autoimmune disease, push it aside and out of the way. But it’s still there, demanding attention, and though I don’t often admit it, it’s also demanding compassion.

I’ve never written that before. 

Probably because, in all honesty, that’s the part I’m just starting to become aware of. 

“My illness does not define me.” 

But it is a big part of me.

Monthly Book Highlights of 2022

As we approach the last week-and-a-half of 2022, I find myself reflecting on the year and thinking about the books I have read. As of this post, I have read 50 books this year, though that is short of my Goodreads Reading Challenge of 57 I had optimistically set back in January. 

This week, rather than focus on the books I didn’t read, I’m going to highlight one book from each month of 2022.

January

The first book I finished this year was Claire Cook’s Life Glows On. I felt like I was starting the year on the right foot, reading about creativity — the ways we demonstrate creativity, the reasons why we need to dedicate time and energy to creative endeavors.

February

During the shortest month of the year, I read Moms Don’t Have Time to Have Kids: A Timeless Anthology edited by Zibby Owens. As I wrote in my blog post: “I found myself relating to so many of the authors. The specifics may differ (where we live, how many kids we have, the ages of our kids) but the emotions are universal.”

March

In March, I read First Lady Dr. Jill Biden’s memoir Where the Light Enters: Building a Family, Discovering Myself. I loved reading about Dr. Biden’s passion for teaching, because I know that passion.

April

I picked up Just Haven’t Met You Yet by Sophie Cousens because I wanted a fun, entertaining read. This novel was that, and more. (Which reminds me, I still haven’t read her other novels.)

May

Jane Goodall’s The Book of Hope: A Survival Guide for Trying Times was a powerful book with a powerful message.

June

We’re a basketball family. And while our team will always be the L.A. Clippers, we respect and appreciate many players on many different teams. The “Greek Freak,” aka Giannis Antetokounmpo of the Milwaukee Bucks is one such player, and why I was interested in reading Giannis.

July

Brighter By the Day: Waking Up to New Hopes and Dreams is the third book I have read by Robin Roberts. The book feels like a pep talk Robin Roberts is sharing with you, simply because she believes in you and just wants the best for you.

August

Weather Girl by Rachel Lynn Solomon is much more than a rom-com. Plus, there’s that exciting feeling knowing an author you have recently discovered has written other books you have yet to read.

September

Jean Meltzer’s Mr. Perfect on Paper was such a great read. I love that Ms. Meltzer writes books featuring a protagonist who is not only Jewish, but who also lives with an invisible chronic illness. (Be sure to also check out her first novel, The Matzah Ball, perfect for reading during Hanukkah.)

October

Love and Saffron by Kim Fay was a story told through the letters two women write to each other during the 1960s. I was instantly intrigued because I have a pen pal. We have been exchanging letters for almost thirty years!

November

Book Lovers by Emily Henry is a special book, for a couple of reasons. First, I bought it during our family trip to Maui. And secondly, it earned five stars on my Goodreads review. 

December

Jasmine Guillory’s Royal Holiday was an entertaining holiday romance. It was a fun escape to be able to open the book and slip into this other world.

Readers, feel free to share some of your favorite books that you read during 2022!

Royal Holiday

I don’t know about you, but there are times when I just want to briefly escape from reality. Not in an unsafe, drug-induced sort of way. But in a slip-into-someone-else’s-life kind of way. Which is one of the reasons I enjoy reading.

And sometimes, I want to read a book where I know everything is going to work out okay in the end. 

Jasmine Guillory’s Royal Holiday fits that description.

It was a fun, fast read that made me smile on several occasions. 

This passage, while not necessarily one of the most important in the novel, was one that I marked. One I needed to read:

“She shook her head. ‘I don’t know why. Life gets busy, with so many things that aren’t actually important but feel important. And there are plenty of weekend days where I could decide to forget my to-do list, spend a few hours at the beach instead, but I’ve only ever done that if there’s a special occasion.’ She looked at him and smiled again. ‘Life is short. I need to stop waiting for special occasions in order to treat myself.’”

And there was this:

“Vivian drove up to her house and smiled at the bouquet of yellow and orange and pink flowers in the passenger seat of her car. Their bright colors had cheered her up immediately when she’d seen them in the grocery store, and she’d bought them on an impulse. Why didn’t she ever buy flowers for herself? Just looking at them made her feel content and helped reassure her that no matter how much it rained, spring would come.” 

Readers, have you read Royal Holiday? Or any of Jasmine Guillory’s novels?

Tough, and Tired

“How long has your leg been hurting?” the technician asked me.

“Years,” I told her.

“No, seriously,” she said.

“Yes, seriously. My calf for over ten years. My thigh for a few years now. The last couple of years really bad,” I said.

The technician continued walking down the hallway and didn’t ask any other questions.

I didn’t know how else to answer her. I wasn’t getting an MRI because of an isolated incident, like a sports injury or something along those lines. I was getting an MRI because the pain in my left leg is no longer limited to my calf. The pain now extends to my left thigh. 

If you follow me on Instagram (@wendykennar), you may remember I posted a picture from an MRI a little more than a month ago. That MRI only looked at my left calf and knee. Apparently, my calf looked okay (whatever that means), but my knee is in bad shape. 

The scan hadn’t looked at my thigh, though the pain was there as well. At my follow-up appointment, my rheumatologist did some strength tests on my thigh. She pressed and squeezed. Everything hurt, and the left thigh is definitely not as strong as the right. This, apparently, was the evidence she needed to order the MRI of my femur.

It’s not easy living with a chronic illness; a chronic illness that causes chronic pain. And it’s really not easy to advocate for myself. But that’s what I had to do in the form of several emails before the appointment with my doctor. I had to keep asking for this second MRI; after, of course, I politely expressed my displeasure that the first MRI hadn’t included my entire left leg. 

My pain has intensified and spread. I told my doctor I was experiencing more difficulty in my daily tasks —getting in and out of the car, climbing the stairs at home, making dinner. I was struggling just to make it through the day. 

I am taking more medication than ever before and not feeling any better.

I’m not one to complain. In fact, I have often been described as tough and stoic. But really, I don’t know how much longer I can put on the brave face. I hurt. And it’s utterly exhausting to hurt this much and not feel like anyone is doing anything to help me feel better.

And now all I can do is wait. Wait to see if the MRI provides us with any answers about why the pain has worsened and spread. If so, this might mean a change in my treatment plan. Or, as tends to happen with me and medical tests, results come back in that “okay-enough” gray area. And then we’re left with trying to make guesses about where we go from here and what we try next.

Going There

I’ve had Katie Couric’s memoir, Going There, on my to-be-read shelf for quite a while. It’s a heavy hardcover book, though now a paperback version is available. 

I knew of Katie — her first husband’s premature death and her resulting advocacy on behalf of cancer and early screenings. I knew of her time on the morning show Today, and her historic role as the anchor of the CBS Evening News

The book goes there.

But it goes much deeper than what I already knew. 

It gives readers a chance to see things from another vantage point. What is it like to witness a historic event, 9/11 for instance, and then have to report on it while simultaneously trying to process the horror and make sure your loved ones are safe? 

Katie Couric goes there, too.

There are so many moving passages, so many “wow” scenes. But some of the parts that most touched me were somewhat unexpected.

“I called the reporter at the Washington Post who’d edited my father’s obituary. ‘I wanted to let you know my mom died, and I’d love to have an obituary for her,’ I said.
“‘Well what did she do?’ he asked. ‘Tell me about her.’
“The question caught me by surprise.
“‘She did everything,’ I replied. ‘Raised four kids, who all went on to be very successful people. She was the heart and soul of our family. She was ahead of her time, volunteering at Planned Parenthood. She worked at Lord and Taylor in the gift department; she arranged flowers for weddings.’
“I’ll never forget the sound of silence on the other end.
“That’s when it really hit me, how undervalued mothers are in our society, especially the full-time kind. I was incensed that somehow my mom’s accomplishments, her amazing life, were deemed not worth writing about.”

“When all is said and done, though, I am my mother’s daughter, becoming more like her by the minute: when I neatly peel a pear and present the girls with the tidy slices on a china plate, or when I fix them lunch and declare, ‘A sandwich always tastes better when someone else makes it for you.’ Or when one of my children feels slighted or wounded, and I rear up like a Kodiak bear on its hind legs, ready to maul whoever’s crossed her. My mom may be gone, but her essence is very much alive in me.”

“Sometimes I’ll post a video in Instagram of me showing off my garden’s bounty — makeup-free, bedhead, still in my pajamas.
“Once someone commented, ‘Wow, she got old.’
“And all I could think was Aren’t I lucky?”

“Everyone has a story. I encourage all of you to preserve yours so that it can be cherished by those you love for years — even generations— to come.”

Mochas, Candles, and Pain

What they saw?

A regular customer. The woman who always orders a small mocha — hot (if it’s cold outside) or blended (if it’s hot outside).

What they didn’t see?

Me, carefully holding my cafe mocha, slowly walking back to my car, thankful that my sunglasses covered my teary-eyes. 

Because I hurt. And because I was sad that I hurt this much. Again. 

I had woken up that morning after having a fitful night’s sleep, filled with strange dreams. 

I dreamed I was telling someone (not sure who, in my dream I didn’t actually see anyone else) that my husband and I met in high school (true) and were high school sweethearts (not true — we were classmates in the same English class junior year). I told this invisible person that my husband and I have been married twenty-three years (true).

I also dreamed that I was doing some physical therapy. I had to sit in some sort of chair and use my legs to push the chair back. But there was resistance, which made pushing the chair difficult. When I woke up, my legs felt like they had gone through a workout. And in the midst of all that, I saw a monster truck. (I told you — strange dreams.)

After taking my son to school, I went to Trader Joe’s. The benefit of going on a weekday, shortly after 8 am, is it’s a whole lot less crowded. Fewer people means shorter lines, but also less exposure to any germs (even though I continue to double mask when shopping). But the disadvantage of going to Trader Joe’s on a weekday, shortly after 8 am, is that I don’t have anyone to help me shop, or load the car, or bring the bags into the house, or put everything away.

Which means I was hurting and feeling kind of down and that’s when I decided to head to our neighborhood cafe and get a mocha to bring home while I wrote. 

The mocha didn’t lessen my pain. Neither did the scented candle I lit (Black Cherry Merlot from Bath and Body Works) or the flowers I had bought at Trader Joe’s. 

There’s really only so much I can do in terms of managing my pain. 

So in the absence of true relief, I try to pay attention to the “little things,” the things that bring me joy, or peace, or comfort. 

Readers, what “little things” bring you joy, peace, or comfort? 

Book Lovers

Book Lovers by Emily Henry will always have a special place in my heart.

It’s the book I bought while on our family trip to Maui. I still have the receipt tucked away inside the front cover.

Plus, I had very much enjoyed Ms. Henry’s first two books, Beach Read and People We Meet on Vacation. In fact, I was reading People We Meet on Vacation during our Maui trip.

But back to Book Lovers. There aren’t many books that I give a 5-star rating to on Goodreads, but this was one of them.

Here are just a few of my favorite passages:

“As different as we are, the second we start unpacking, it could not be more obvious that we’re cut from the same cloth: books, skin care products, and very fancy underwear. The Stephens Women Trifecta of Luxury, as passed down from Mom.
‘Some things never change,’ Libby sighs, a wistfully happy sound that folds over me like sunshine.
Mom’s theory was that youthful skin would make a woman more money (true in both acting and waitressing), good underwear would make her more confident (so far, so true), and good books would make her happy (universal truth), and we’ve clearly both packed with this theory in mind.”

“I sip my ice-cold drink and bask in the double-barreled serotonin coursing through me. Is there anything better than iced coffee and a bookstore on a sunny day? I mean, aside from hot coffee and a bookstore on a rainy day.”

“Libby and I used to joke that Freeman Books was our father. It helped raise us, made us feel safe, brought us little presents when we felt down. 
Daily life was unpredictable, but the bookstore was a constant.”

“As soon as the library’s automatic doors whoosh open, that delicious warm-paper smell folds around me like a hug, and my chest loosens a bit.” 

This, I think, is what it is to dream, and I finally understand why Mom could never give it up, why my authors can’t give it up, and I’m happy for them, because this wanting, it feels good, like a bruise you need to press on, a reminder that there are things in life so valuable that you must risk the pain of losing them for the joy of briefly having them.”

Julie and Julia

A few days ago, I was blindsided by the news.

Julie Powell had passed away.

I admit — my knowledge about Ms. Powell was largely limited to what I had read in her memoir, Julie and Julia: My Year of Cooking Dangerously, and what I had seen in the movie adaptation starring Meryl Streep and Amy Adams. 

I remember leaving the movie theater with my husband, and trying to decide what to go eat. (There really is no choice —  after watching the movie, you have to go eat.) I also remember my husband telling me I should start a blog, too.

At that time, my husband knew I enjoyed writing. He knew I wanted to write more. But he also knew that between my teaching career and our young son, there wasn’t a whole lot of extra time left for my writing.

But, because he knows me so well, my husband also knew that if I had a deadline, a self-imposed assignment, I would do what I needed to do to complete my assignment. 

That was the start of my first blog. A blog I called “Wendy’s Weekly Words.” A blog I published on Wednesdays to keep the W-theme going. A blog that was all over the place in terms of what I wrote about. 

Still, it got me to prioritize my writing time which got me writing on a regular basis. It led me to my current blog; the blog you’re reading now, which exists on my own website. 

And it all started from a movie that only existed because of the book that came before it.

And that’s the full-circle of this — words have power. The power to lift and inspire and encourage. 

The power to see a story unfold on-screen and think, maybe I could do that too

Julie Powell’s story did that for me. 

Rest in peace. 

Writing Out the Storm

There are some people who see little value in re-reading a book. After all, the world is full of books. There will never be time to read them all.

I am not one of those people.

One of my most re-read books is Barbara Abercrombie’s Writing Out the Storm: Reading and Writing Your Way Through Serious Illness or Injury. (Barbara holds a special place in my heart. You can read my tribute post, For Barbara, by clicking here.) 

Inside my copy of the book, is a print-out of a short email exchange between Barbara and me. I had written Barbara, thanking her for writing the book, and letting her know it had helped me put my thoughts on paper. That email was dated 2012.

This paragraph is taken from the back of the book:

This powerful and deeply inspirational handbook is for anyone coping with serious illness or injury — be it theirs or that of a loved one — who wants and needs to help themselves through the healing process. Offering her own experiences with breast cancer, as well as stories from other authors who have suffered from illnesses or severe injuries…

Though I have read this book several times, highlighting passages, marking pages with sticky notes, each read feels like a slightly new read. Each time I turn to this book, I’m surprised when a passage sticks out, a passage that in all my other reads had never really stood out to me before. 

That’s because I’m different. The book doesn’t change. But I do. Each time I read this book, I am a slightly different version of myself. And each time I read this book, I find writing prompts and quotes that speak to me and serve as inspiration in my writing. 

This time around, these are just a few of the sentences that jumped out at me.

Once you’ve heard the unthinkable, you know it’s possible to hear it again, or worse.”

“I’ve stopped fighting the diagnosis. I now fight the disease.”  

“I suppose it’s easy to be courageous when you don’t know you are doing so.”

Readers, I’m curious. Do you ever re-read books? Let me know in the comments. 

Love and Saffron

My latest fiction read was the delightful novel Love & Saffron: A Novel of Friendship, Food, and Love by Kim Fay

It wasn’t the food element that drew me in. I was intrigued by the setting — Los Angeles and Washington State in the 1960s.

I picked up this book because it is a story of female friendship. And most importantly, I picked up this book because it is a story told through letters. 

(Many of you may not know, but I have a pen pal who lives in Japan. We have been writing since 1993! While we do occasionally send an email, most of our communication happens through hand-written letters. Under my bedside table, I have a box where I keep all her letters.)

Here are just a few snippets from the novel to share with you:

“Los Angeles is such a varied place. There are foods from dozens of countries at our Grand Central Market alone, and there is a different country in every corner of the city. At the risk of sounding like a shill for the tourism board, Armenia, Italy, Poland, Portugal, India, Greece, you name it and you will certainly find it here.”  (This passage was taken from a letter dated September 30, 1963, but I think it is just as true for 2022.)

“Personally, I don’t enjoy the phone. It feels impersonal to me, which might sound strange since a voice in one’s ear is a cozy thing. But when I’m on the line, I can mend or play Solitaire, while with a letter I must pay close attention. There is unequaled satisfaction in composing words on a blank page, sealing them in an envelope, writing an address in my own messy hand, adding a stamp, walking it to the mailbox, and raising the flag. It’s like preparing a gift, and I feel like I receive one when a letter arrives — yours most of all.”

“I will treasure our midnight conversations, especially about our hidden selves. To think we are made up of so many different layers, and we may never meet all of them before the big sleep. I have been thinking about your comment, about how when we are very young we are so sure of who we are. I admit, there have been times when I longed to be fifteen again, confident that I knew absolutely everything about myself. But I prefer the viewpoint you have been pondering since Francis’s encounter with the saffron. The less we cement ourselves to our certainties, the fuller our lives can be.”