Month: November 2023

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 That site is no longer active, which is why I chose to lightly edit and re-submit the essay.)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.