Author: Wendy Kennar

The Light We Carry, Part Two

Posted on by Wendy Kennar

This week’s blog post features some of the oh-yes-passages from part two of The Light We Carry by Former First Lady Michelle Obama. What do I mean by oh-yes-passages? Passages that resonated with me. Passages that made me pause and reflect. Passages that touched me in some way. 

(If you missed the blog post about part one, you can click here to read it.)

“I’m not sure how friendship, or even just engaging with another person in the three minutes it takes to buy your morning cup of coffee, has come to feel like a small act of bravery. But increasingly it seems that way. Perhaps, as I mentioned earlier, it’s because we now carry with us little rectangular shields against face-to-face sociability — our phones — which I think also shield us from serendipity. Any time we avoid even a small real-life connection, we are to some extent avoiding possibility.”

“When we drop our fears about newness and open ourselves to others, even through quick and casual interactions, even while masked — saying hello to someone in the elevator, for example, or chatting in a grocery line — we are practicing an important form of micro-connection. We’re signaling a general okayness between us, adding just a drop of social glue to a world that desperately needs it.”

“The best way to be a friend to someone, as I see it, is to revel in their uniqueness, to appreciate each person for what they bring, receiving them simply as themselves.”

“Over the course of my adult life, I’ve lived in a number of places, but as far as I’m concerned, I’ve only ever had one real home. My home is my family. My home is Barack.”

“Like a lot of people, I had ideas about what marriage would be like, and few of them turned out to be right.”

“Much as it is with marriage and partnership, the fantasy versions of being a parent sit at the forefront of our cultural imagination, whereas the reality is way, way, way less perfect.”

“Caring for your kids and watching them grow is one of the most rewarding endeavors on earth, and at the same time it can drive you nuts.”

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.     

My Spoonie NaNoWriMo

Posted on by Wendy Kennar

If you’re a fiction writer, or live with a fiction writer, you’re most likely familiar with NaNoWriMo, which is the abbreviation for National Novel Writing Month. NaNoWriMo takes place each November, with writers committing to work towards the goal of writing the draft of an entire novel (50,000 words) in one month. 

NaNoWriMo started back in 1999, and since then it has become a worldwide phenomenon. Writers find community, encouragement, resources, and support by participating and connecting with other writers going through the same process.

I don’t write fiction, and the sheer number of daily words required (50,000 words over 30 days works out to about 1,667 words a day) didn’t feel attainable for me, so I never participated in NaNoWriMo.

Until this year.

And it’s all because of Sandra Postma. (You may remember I wrote about Sandra and the incredible work she does as a Book and Spoonie Coach  in a blog post back in October. In case you missed it, you can click here to read the post.)

On her Instagram, Sandra encouraged spoonie writers to participate in NaNoWriMo in a way that worked for each of us. She pointed out that as people who live with chronic illness, we’re accustomed to modifying a variety of activities. Why should NaNoWriMo be any different? Sandra encouraged us to participate in a Spoonie NaNoWriMo — one with individual goals that work for each writer. That I could do. 

Being a former teacher, I printed out the goals I set for my NaNoWriMo, as well as a November calendar. Each day I met my goal, I put a sticker in the calendar box. (Again, former teacher. Plus I had all these cute stickers on-hand.)

My Spoonie NaNoWriMo Goals, as I printed them out:

Each day in November I will:

Complete a 5-minute writing exercise.

Write down one statement, acknowledging something I did, 

something my body was strong enough to do.

And I did it! (Note all the stickers!)

It certainly wasn’t easy. There were days I was tempted to skip the whole thing, but I’m glad I didn’t. The hardest part was the daily statement, a note of appreciation and gratitude for things my body is still strong enough to do, because I’m not used to highlighting myself in this way.

My statements tended to acknowledge a “bigger” outing or activity — taking down and putting away our Halloween decorations, decorating for Thanksgiving, grocery shopping (though I no longer do that by myself), a longer walk in the neighborhood. 

While those “bigger” activities were worth documenting, writing this list helped me see how hard I work each day, how much I continue to do each and every day, and all while my pain has consistently been more and more intense.

For instance: I make the bed each morning. I pick up my own prescriptions at CVS. I shower each night. I never skip brushing my teeth. I get dressed each day, complete with my daily jewelry (nine rings on eight fingers, bracelets, earrings, necklace). 

The unexpected result of my Spoonie NaNoWriMo is the feeling of achievement and pride — in my writing, yes, but also in myself! 

Dear Readers, anyone else participate in a version of NaNoWriMo? How did it go for you? Let me know in the comments.

Chronic Illness at Midlife

Posted on by Wendy Kennar

“I’m in my forties, yet when I climb the stairs to our bedroom each night my knees creak as if I’m walking on the hardwood floors in my parents’ nearly-hundred-year-old house. I have a disabled parking placard in the car, something my dad didn’t qualify for until he was seventy-five. Acquaintances may tell me I look fine, but I don’t feel fine. I feel worn-out and weary.

“It’s hard to know which parts of my life are impacted by natural aging and which parts have been impacted by my autoimmune disease. Is my lack of energy and lack of flexibility a result of my body simply not being twenty-one anymore? Or have all these changes somehow been sped up, as if I’m rolling along downhill, the brakes have gone out, and not only can’t I stop, I can’t even slow it down?

“I don’t know. I’ll never know. Because there’s no way to separate the naturally-aging me from the chronic patient me.”

I’m pleased to share that the paragraphs above are an excerpt from my recently published essay “Prime Time or Off-Peak? LIfe with Chronic Illness at Midlife.” You can click here to be re-directed to Midstory Magazine to read the essay in its entirety.

(By the way, long-time readers may recognize this essay. It had been published on a different site quite some time ago. That site is no longer active, which is why I chose to lightly edit and re-submit the essay.)

Inspiring Words From Inspiring Women

Posted on by Wendy Kennar

I have taken my time, reading and appreciating Words to Live By: 50 Inspiring Quotes by 50 Inspiring Women illustrated by Jade Purple Brown. (I first wrote about this book, and specifically one quote, a month ago. If you missed that post, you can read it here.)

I have now completed the book, and this week, I am sharing a few of my favorite quotes with you:

“Figure out what you need to do to be the heroine of your own story.” – Ava DuVernay

“Do ordinary things with extraordinary love.” – Mother Teresa

“What you do makes a difference, and you have to decide what kind of difference you want to make.” – Jane Goodall

“Real change, enduring change, happens one step at a time.” – Ruth Bader Ginsburg 

“You are powerful and your voice matters.” – Kamala Harris

“It is never too late to be what you might have been.” – George Eliot

Dear Readers, do any of these quotes resonate with you? Or, do you have a favorite quote? 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.

Hiding My Realness

Posted on by Wendy Kennar
This photo was taken a few years ago in Cambria, CA.

Last week I highlighted some of my favorite passages from part one of Michelle Obama’s The Light We Carry.

This week, it’s one sentence I want to highlight. One sentence I cannot stop thinking about.

“We only hurt ourselves when we hide our realness away.”

In many areas of my life, I am unapologetically real. I don’t color my hair. I allow my definitely-non-brown strands to commingle with my very-brown strands.

I don’t wear make-up. What you see is what you get.

If my purse ever matches my shoes, it was purely coincidental. I don’t have enough purses, or shoes for that matter, to make that particular accessory match happen on a regular basis.

I do, however, change my necklace and earrings each day, and do my best to match those with the top I’m wearing. 

I realize most people don’t wear nine rings on eight fingers. But I do. And I’m okay with not being like everyone else.

Aside from all that; however, I do hide my realness away. 

Often. 

And, if you’re chronically ill, a.k.a a “spoonie,” you probably do, too.

(If you missed it, you can click here to read my blog, “Trying to Figure Out This Spoonie Life.”)

Because when you’re chronically ill and experiencing chronic pain, you have learned to put on, what I call, your “game-face.” Living with a chronic illness is sometimes like being in a high-stakes poker game that doesn’t end. You can’t let on how bad the pain is. For a number of reasons you mask your pain so you look “fine.”

Sometimes I do that because I don’t want any more suggestions about medicinal cannabis or green smoothies or compression socks. 

Sometimes I wear my game face because it’s just easier. Showing my pain often makes those around me uncomfortable. And if I’m already feeling bad, I don’t need to add to the situation by making those around me feel bad, too. 

There are more reasons. But I’ll stop there, because it brings me back to Mrs. Obama’s statement:  “We only hurt ourselves when we hide our realness away.”

That’s the part I haven’t completely figured out. I’m certainly not trying to hurt myself. Yet I am very much trying to protect my near and dear ones. 

The work on myself continues.

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 Light We Carry, Part One

Posted on by Wendy Kennar

I am currently reading Michelle Obama’s The Light We Carry: Overcoming In Uncertain Times. And let me say, I am about halfway through the book and have many pages flagged with sticky notes. 

So rather than have one super-long post, I decided to share some of my favorite passages one part at a time. (The book is split into three parts.)

(Last week I wrote about buying a wheelchair and referenced a little bit from Mrs. Obama’s book. If you missed last week’s post, you can read it here.)

This week, allow me to share some of my favorites from Part One:

“That’s what tools are for. They help keep us upright and balanced, better able to coexist with uncertainty. They help us deal with flux, to manage when life feels out of control.” 

“What does it mean to be comfortably afraid? For me, the idea is simple. It’s about learning to deal wisely with fear, finding a way to let your nerves guide you rather than stop you. It’s settling yourself in the presence of life’s inevitable zombies and monsters so that you may contend with them more rationally, and trusting your own assessment of what’s harmful and what’s not. When you live this way, you are neither fully comfortable nor fully afraid. You accept that there’s a middle zone and learn to operate inside of it, awake and aware, but not held back.”

“Our hurts become our fears. Our fears become our limits.”

“Because what my mother showed me is that if you try to keep your children from feeling fear, you’re essentially keeping them from feeling competence, too.”

“The unknown is where possibility glitters. If you don’t take the risk, if you don’t ride out a few jolts, you are taking away your opportunities to transform.”

“What [Toni] Morrison was doing for her kids is what my own parents did for me: She was giving them a simple message of enoughness. She was validating their light, that unique bit of brightness inside each of them — literally showing them it was there and it belonged to them, a power they could carry for themselves.”

“My father, whose shaky demeanor and foot-dragging limp sometimes caused people to stop and stare at him on the street, used to tell us, with a smile and a shrug, ‘No one can make you feel bad if you feel good about 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.

I Bought Something

Posted on by Wendy Kennar

This picture was taken at the National Museum of American History during our summer trip to Washington, D.C .

I have some news to share.

But first, for readers who may not know, a little background.

When I first became ill in 2010, and diagnosed late in 2011, I was determined my autoimmune disease wouldn’t greatly impact my life. 

I didn’t know it then, but that really wasn’t my decision to make. My body was doing its own thing, which is how autoimmune diseases work. Your body attacks itself.

I retired from my twelve-year teaching career in 2013. It was a heartbreaking decision to make, but at the same time, I really didn’t feel I had a choice. My body was breaking down, and I was finding it harder and harder to keep my head above water between teaching elementary school, parenting my young son (he was two when I became ill), and trying to maintain my other roles as wife, daughter, and friend. 

Since that time, there have been ups and downs, or medically speaking, flares and periods of remission. 

But now I’m in a new place. My leg is weaker than it has ever been. Daily intense pain, though my body currently shows no signs of active inflammation.  

Which brings me to my news. 

I ordered a wheelchair. 

You may remember my blog post about my decision to rent a wheelchair for our summer trip to Washington, D.C. (If you missed it, you can read it here.)

Since then there have been other times when a wheelchair would have helped. Seeing Return of the Jedi in concert at the Hollywood Bowl. Taking a family walk. And there are other outings I have avoided, such as visiting The Huntington, simply because I didn’t think my legs were strong enough.

But, I’m scared. 

I don’t know if I am just stuck in a really long, really bad flare that will eventually ease up. I don’t know if better days are ahead once I can get past this rough patch.

Or, is this just the beginning? Am I headed to a reality that finds me increasingly dependent on a wheelchair and needing someone to push it, to push me.

No one knows. 

I’m trying not to let the purchase of a wheelchair make me sad. I’m trying to remind myself how helpful it was in D.C. How having a wheelchair allowed our family to see and do as much as we did. 

I’m trying to think of the wheelchair the same way Michelle Obama wrote about her dad’s cane in her book The Light We Carry: Overcoming in Uncertain Times.

“As we saw it in my family, that cane symbolized nothing. It was just a tool, the same way my mother’s spatula was a tool in the kitchen, or my grandfather’s hammer got used any time he came over to fix a broken shelf or curtain rod. It was utilitarian, protective, something to lean on when needed.” 

I’m trying. But it’s not easy.

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.

Kissing Kosher

Posted on by Wendy Kennar

Here’s what you should know about Kissing Kosher by Jean Meltzer.

It’s a rom-com. A delightful rom-com.

But even more than that — the protagonist, Avital Cohen, happens to be a Jewish woman who lives with a chronic illness and chronic pain. And for that I applaud Ms. Meltzer. (I have written about Ms. Meltzer’s first two books in previous blog posts, which you can read here and here.)

While the rom-com was fun to read and provided me with a fantastic escape from real life, it was the very real, very relatable aspects of Avital’s chronic illness that I most resonated with. 

Here are just a few of the passages I marked with sticky notes:

“She got used to disappearing into the ceiling while doctors poked and prodded. That was the funny thing about chronic pain. It didn’t disconnect her from her body. Instead, it made every single second of her life about her body. She couldn’t escape the never-ending reminders of her pain if she tried.”

“Like many folks dealing with the onset of chronic illness, she had hope — this great and unfettered optimism — that she would one day wake up normal again if she could just find the right treatment.
“There was no cure. While some of the treatments helped, nothing completely eradicated the constant ache she lived with. There were bad days and better days, but rarely did she experience pain-free days.
“Despite all her best efforts to win the war against her own failing body — despite the fact that she was trying not to make her disease her identity — she kept getting worse. Some nights, the fear that accompanied the realization that nothing she did was working was more awful than the pain itself.”

“People always say, Don’t make your disease your identity. And you know what, Josh? I hate that statement. I think it’s the most ableist thing I’ve ever heard. The very definition of chronic is that it’s every day. It’s something I will have to negotiate, and manage, for the rest of my life. It touches everything.”

“But mainly, the most important thing I’ve realized is that if I’m going to be in pain the rest of my life, then it’s even more important that I hold on to my joy. I need to create the life that makes me happy. So that when the bad days come, because they will keep coming, Josh … they don’t hurt me as much.”

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.

Everyone Has a Story

Posted on by Wendy Kennar

I am currently reading Words to Live By: 50 Inspiring Quotes by 50 Inspiring Women illustrated by Jade Purple Brown.

I bought this book back in July, on our last day in Washington, D.C. We had spent the morning exploring the National Portrait Gallery, and I found this book in the gift shop. (Truth be told, several books in the gift shop caught my eye. But I had to consider our limited luggage space.) 

I just started reading the book this past week. A few pages a day. Thought-provoking quotations accompanied by vibrant illustrations.  

This week I’d like to share a quote attributed to Frances Hodgson Burnett:

“Everything’s a story —

You are a story —

I am a story.”

I believe that everyone has a story to tell. It’s one of the reasons I read memoir. And it’s one of the reasons I’m writing a memoir. I can no longer teach in a classroom, but hopefully, I can continue to teach through my writing.

Question, dear readers:  Have you read any memoirs lately? Any recommendations?  

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.

Trying to Figure Out This Spoonie Life

Posted on by Wendy Kennar

Lately, I have been thinking a lot about the term “spoonie.” 

The term “spoonie” comes from the Spoon Theory, both of which are familiar terms if you’re a member of the chronic illness community. Basically, the Spoon Theory is an analogy used to describe the amount of physical and mental energy a person has available each day. The theory was developed by Christine Miserandino. While out to lunch with a friend, Ms. Miserandino used the spoons on the table to explain to her friend what it’s like to live with a chronic illness, in her case lupus. Each spoon represents a finite amount of energy. Each day you may wake up with a different amount of spoons, yet there are still certain tasks that are expected to be completed on a regular basis — showering, getting dressed, preparing a meal. While a healthy person may begin the day with an unlimited amount of spoons and uses only one spoon at a time for the most basic tasks of the day, a spoonie may start the day with only five total spoons and has to make decisions about which tasks absolutely must be completed that day and which tasks can be skipped. Because when the spoons are gone, so too, is a person’s energy to do anything else. 

For a long time, I didn’t consider myself a spoonie simply because I didn’t have the option of paying attention to my lack of spoons. My son still needed to be picked up from school, library books needed to be returned, dinner needed to be prepared. 

Though I have spent more than a decade as a chronic illness patient, I still haven’t figured out when to push through and do something despite my pain and fatigue and when to pay attention to my body and acknowledge I just can’t do something.

It’s not easy navigating this life. Thankfully, I have help.  

Last week, I had a Zoom conversation with Sandra Postma, a Book and Spoonie Coach, offering “guidance for writers with a chronic or mental illness or disability.” This was our second session, and as with my first session, I left this session thinking about a couple of re-framing statements Sandra shared with me. 

This week, I’d like to share two of Sandra’s brilliant statements with you:

“I am not a burden, my illness is.”

“Alongside my illness I am ..”

I’m thinking a lot about these statements. Thinking about how I can use these statements to help me be more kind and gentle with myself. 

Maybe they will help you, too. 

(Just so you know – Sandra knows I’m sharing this information and has given her consent for this blog. You can learn more about Sandra and the work she does on her website.)