chronic pain

Yes, And

Posted on by Wendy Kennar

Last week was a time of big emotions. A lot happened in my world and with it came a lot of mixed feelings.

My mom celebrated her 79th birthday on the same day my son celebrated his 16th birthday.

A former kindergarten student, a child I taught during my first year of teaching, looked me up online, found my website, and reached out with an email that made me cry. She wrote, “I wanted to thank you for being a great teacher and setting a solid foundation for my education.” Did I mention she’s now a teacher?

We had a family outing to The Huntington Library, Art Museum, and Botanical Gardens. A place we hadn’t visited since March 2020, a week before the world shut down because of the coronavirus. Only this time we visited with me in my wheelchair.

Our former next door neighbor, now 89 years old, remembered my son’s sixteenth birthday and called to offer birthday wishes. 

So, it’s been a lot. 

Something I have learned, through the work with my therapist and my years living with my autoimmune disease, is that it’s possible to feel two very different emotions at the same time. In fact, when you live with chronic illness, it happens quite a lot. At least to me.

I am currently reading The Lives We Actually Have: 100 Blessings for Imperfect Days by Kate Bowler and Jessica Richie. I try to read one blessing a day, though, I admit I sometimes forget and miss a day (or two).

This week, I’d like to share a bit of Kate Bowler’s blessing, “For Stretching Your Heart,” which I think explains these mixed emotions so well:

“Yes, I have so much to be thankful for,
and this hasn’t turned out like I thought it would.
Yes, I feel moments of joy,
and I have lost more than I could live without.
Yes, I want to make the most of today,
and my body keeps breaking.
Yes, I am hopeful, and this is daunting.
Yes, I am trying to be brave, and I feel so afraid.”

Because the truth is — yes, things could be worse, and things could be better.

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.

It Feels Like…

Posted on by Wendy Kennar

“In the beginning, it was easier to describe the pain. Because the pain was new. Because the pain was concentrated in my left calf. And, most importantly, because I truly believed the pain was temporary.”

The paragraph above is taken from my personal essay, “It Feels Like…” And I am so proud to share that my essay has been published in The Mersey Review, Issue 2. 

I have never had so many personal essays published one-after-the-other, like I have recently. (Five of my personal essays have been published between January 2024 and March 2024! My Published Work page has a complete listing.)

You can click here to access the entire issue.

And you can click here to be taken directly to my essay.

Also, be sure to read all the way to the bottom. After my bio, you’ll come to a statement that says: “You can read Wendy Kennar’s Few Words here.” Click on the link and you’ll be taken to another page which includes my answers to a few questions the editor asked me about the writing process. Plus, I answer that “eternal question” — hardback or paperback?

Dear Readers, feel free to share your preference in the comments: hardcover or paperback?

One Foot In Front of the Other

Posted on by Wendy Kennar
Photo Credit: HerStry

Dear Readers, I have more publication news to share!

I’m proud to say my personal essay, “One Foot In Front of the Other,” was published by HerStry as part of their Monthly Theme Series. February’s theme was “My Body, Myself.”

Here is just a snippet:

“It’s easy to look at my body and feel disappointed, disheartened, and cheated. I’m in my forties, a time when many women feel empowered, as if they have reached their prime. But that’s not how I feel. I feel like my aging process has been sped up, like a time lapse video. I feel like my body can’t entirely be relied on, as if I’m defective. 

“I’m closer to fifty than I am to forty and am trying to make peace with this compromised body of mine. Occasionally I look at myself in the mirror and linger on my face. I think back to all those days when I yearned for clearer skin. Now, an occasional pimple doesn’t even register on my list of things to be concerned about. Now my self-consciousness has transferred to my left leg with its two scars (from two different muscle biopsies) and prominent red, blue, and purple veins.” 

You can click here to read the essay in its entirety.

Chronic Illness, Chronic Pain, and Gold Stars

Posted on by Wendy Kennar

I am pleased to share that my personal essay, “Chronic Illness, Chronic Pain, and Gold Stars,” has been published in a new anthology, Chronic Poetics. “The book contains artwork, essays and poetry written entirely by people who have experience of chronic pain and chronic illness.” Each piece of writing has been “arranged and visually interpreted,” making it possible to create an anthology that tells a “visual story as well as a literary one.”

I’d like to share two excerpts from a section near the end of my essay:

“I wish someone had handed me a manual of some sort. My car came with one. The new little handheld vacuum I recently bought came with one. (I don’t remember the last time my trunk looked so clean.) But no one told me how to navigate living with a chronic illness. No one pointed out that a chronic illness is one thing. A chronic illness causing chronic pain is something else.”

“There are moments I want to cry. Moments I want to scream. Moments I want to throw things and break things. Because this is hard. And it’s tiring. And it often doesn’t feel like it gets any easier or any better.” 

You can find more information about the anthology here.

The visual interpretation of my personal essay.

Something to Endure

Posted on by Wendy Kennar
My memoir is divided into three parts.
The final essay in this part, and the book, is
"Something to Endure."

Super exciting news:  my manuscript is complete, and I will now be entering a new stage of the writing process — the querying-agents phase. 

But before I got here, when I was revising and rewriting my manuscript, I had to make a decision regarding my final essay. I had three essays that my book coach and I agreed were all possible candidates for that all-important last essay in the book.

It is my hope that my memoir will be read by those living with chronic illnesses, as well as those who know people who are living with chronic illness. I’m hoping that my story can serve as an example. Though the medical specifics may vary, the emotions may be quite similar. So someone who lives with diabetes, for example, could give my book to a loved one, point to one of my essays, and say, “Here. Read this. This is what I feel like sometimes.” 

For far too long, terms such as “disability” and “disabled” have been too narrowly defined. I really want my memoir to broaden those definitions, and I would like my story to serve as just one example of what a disabled life looks like.

When I started working with my book coach, I told her I was writing the book I needed to read when I became ill. I hope after reading my memoir that my chronically ill readers feel less alone and more understood. Along those lines, I want my final essay to give readers a sense of comfort, a dose of good-feels. 

Before making my final decision, I stopped to reflect and think about how I want my readers to feel when they’re done reading my memoir-in-essays. 

These were the adjectives that I came up with:

Hopeful.

Enlightened.

Inspired.

Comforted. 

With that in mind, I made my decision (and my book coach agrees). My final essay is titled “Something to Endure.” Because basically that is the bottom line when it comes to chronic illness. You have to endure the illness. You need to stick it out and figure out ways to handle it, to be with it day-in and day-out for the long haul.

But you don’t have to do it alone. Books, including my own, connect us.

Get a Life, Chloe Brown

Posted on by Wendy Kennar

Get a Life, Chloe Brown by Talia Hibbert is what some readers would refer to as a rom-com. Some readers may use other terms such as “chick lit” or “women’s fiction,” but I’m not a fan of those terms. You should know that this particular rom-com has quite a high level of “spice,” meaning explicit “steamy” scenes.

But here’s the main thing you should know about Ms. Hibbert’s novel:  Chloe Brown, the main character, is a Black woman who lives with fibromyalgia, a chronic illness causing chronic pain. Plus, the book features an interracial relationship. I love this sentence taken from the author’s website:  “She writes spicy, diverse romance because she believes that people of marginalised identities need honest and positive representation.”

This week, I share with you just a few of the passages that really stood out to me: 

“Most people had trouble accepting the fact that Chloe was ill. Fibromyalgia and chronic pain were invisible afflictions, so they were easy to dismiss. Eve was healthy, so she would never feel Chloe’s bone-deep exhaustion, her agonizing headaches or the shooting pains in her joints, the fevers and confusion, the countless side effects that came from countless medications. But Eve didn’t need to feel all of that to have empathy. She didn’t need to see Chloe’s tears or pain to believe her sister struggled sometimes. Neither, for that matter, did Dani. They understood.”

“It had been a frustrating few days. She’d fallen into an infuriating cycle when she’d climbed that tree. Physical overload led to pain and a complete dearth of spoons, also known as mind-numbing exhaustion; which led to extra meds and insomnia; which led to sleeping pills and too much brain fog; which led to, in a word, misery.”

“…my body was different. The weight on my chest, and the cold — they faded, as I got better. But my bones still felt fragile. It never went away. Over the months, I noticed more and more problems. I was exhausted all the time. I got these awful headaches for no reason. And there was the pain — always, so much pain. I’d go for a walk and feel like I’d worked every muscle to the point of tearing. If I spent too long on my laptop, my hands would hurt so badly I cried. I started feeling afraid of my own body, like it was a torture chamber I’d been trapped inside.”

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.

Unhelpful Advice

Posted on by Wendy Kennar
(This photo was taken a couple of months ago. Different doctor. Dreadful pain chart.)

I had a hard doctor’s appointment last week. 

Maybe “hard” isn’t the right word. After all, I found parking half-a-block away from the building. The doctor was only running a few minutes behind schedule. And because I had blood work done in December, no additional labs were needed. 

In those terms, it was a pretty good appointment. 

But it was still a hard appointment. Because I left the appointment feeling weary, disappointed, and dejected. Angry, frustrated, and pissed. Sad, crushed, and dejected.

Later, I told my husband, “No one knows what to do with me.”

My rheumatologist (rheumatologist number three in my life with chronic illness) cannot explain my increased levels of pain and decreased levels of energy. Because the blood work shows my inflammation is under control. Which means my medication is working. But it doesn’t explain why I feel like “I’m going downhill, fast, and no one is able to slow me down.” (I said that same sentence to my doctor. He nodded his head. He said he understood.)

I should point out that I do like this doctor. I like that he looks at me when I speak and really seems to be paying attention to what I have to say. I like that, during past appointments, he seems thoughtful when suggesting new medications to try and shares with me his reasoning behind those medications. (By the way, I have tried every medication he has suggested. A few made me worse than I was to begin with.)

My doctor said he’s concerned about “structural damage” to my body. Which sounded more like a description of a car than a person. My doctor voiced his concern about feelings of depression I may have. I reminded him I regularly speak with my therapist.

He wants me to try physical therapy. Again. (Readers, I have tried physical therapy multiple times over the years. At different locations. Usually I’m told how inflexible I am. How much less range of motion I have in my left leg compared to my right leg.) I have the phone number; I just need to call and make the appointment. I’m procrastinating. 

But that wasn’t his only recommendation. 

“Do you multi-task?” he asked.

“I’m a mom. Of course I do. Don’t all moms?” I asked.

He didn’t seem amused by my response. Though I wasn’t trying to be amusing. 

My doctor says multi-tasking leads to additional stress. 

So do less, and eat more whole grains (another one of his suggestions).  

But I can tell you right now that won’t help my pain. 

The truth is — there is no easy fix. I know that. He knows that. 

At the same time, no chronic illness patient wants to be sent on their way having been told to multi-task less.

Invisible Forces at Work

Posted on by Wendy Kennar

“It’s the invisible nature of the coronavirus that complicates matters. So many people don’t fear something they can’t see. However, I know how powerful and life-changing invisible forces can be. My autoimmune disease, Undifferentiated Connective Tissue Disease (UCTD), is an invisible disability, causing pain, fatigue, and weakness in my left leg. My rheumatologist described it as sharing overlapping symptoms of lupus, rheumatoid arthritis, and myositis. UCTD is a chronic illness causing chronic pain. 
“A quick glance, and I look ‘fine.’ No assistive walking device needed on a daily basis. No one can see inflammation by looking at me, especially since my legs are always covered by loose-fitting pants or long flowing skirts. No one can see the pain, the crushing sensation I experience in my leg as if my son has placed his heavy backpack on my lap. No one can see the tightness of my calf, as if it is stuck in a perpetual charley horse. However, just because you can’t see my disability, doesn’t make it any less real.”

The paragraphs above are an excerpt taken from my personal essay, “Invisible Forces at Work,” which, I’m pleased to say, has recently been published in an anthology titled The Covid Logs. “The Covid Logs provide a space for the disabled and chronically ill communities to share their experiences of navigating the Covid-19 pandemic.” The anthology is available as a PDF and a full-color zine and includes personal essays, visual art, and poetry. You can click here to learn more about this special collection.  

Chronically Fabulous

Posted on by Wendy Kennar

Chronically Fabulous is the name of author Jean Meltzer’s new podcast. It’s an interesting combination of words. (And if you’re not familiar with Jean Meltzer’s books, be sure to check out my posts about her first novel The Matzah Ball, her second novel Mr. Perfect on Paper, and her third novel Kissing Kosher. They all feature main characters who are Jewish women living with chronic illnesses and chronic pain.)

The podcast aims to be a safe space for listeners, and function like a conversation with your chronically ill friends. 

While I acknowledge my chronic illness, I don’t think it’s fabulous in any way. Actually I don’t even use the word “fabulous” all that much.

But, put together – Chronically Fabulous. I kind of like the idea. 

2023 was one of my toughest health years in terms of intense pain. It was the year of admitting it’s too hard to grocery shop by myself. The year we rented a wheelchair for our family summer trip to Washington, D.C. The year I bought a wheelchair to have for those special occasions when I’ll need it (such as attending a performance at the Hollywood Bowl). 

And while those were all super tough things, they’re also things I’m proud of. I didn’t cancel our summer trip after I began researching museums and monuments in D.C., knowing I wouldn’t be strong enough to walk them all. I found a way for our family to take the trip and that, I think, is an example of being chronically fabulous.

So far, Ms. Meltzer has released one episode of her podcast, and the part that most stood out to me was the discussion regarding “pacing.” No doctor has ever spoken to me about pacing — the idea that certain activities are more energy-intensive, so a person living with chronic pain has to figure out rest days (usually before and after the event). Pacing is a tool; a tool I haven’t regularly used. But it’s time. Because I simply can’t keep up anymore. Listening to the podcast, I realized I don’t do what Ms. Meltzer spoke of — creating boundaries and making myself, my health the priority. She wants listeners to “live your best, most valuable life.” 

And I want that too. 

Something I came to acknowledge this past year was my tendency to do everything possible to fight my pain; trying to pretend like there’s nothing wrong. Trying to act as if I can keep up with my same-age-as-me husband and high-school-age son. I have kept up the act for years, because I didn’t want to miss out on any shared family experiences. Because I didn’t want my illness to hold me back, or take any more from me than it already had, most heart-breaking of all being my teaching career. 

But 2023 was the year I saw I just can’t keep doing it. Something shifted. I am not waiting for some cure or major fix. It’s not coming. Instead, I’m searching for small, but mighty, tweaks. “Little” things that make a big difference in how I get through my days. And something I need to consciously work on is pacing. Learning to give myself permission to sit and read. Not pushing myself to plan big outings both weekend days. Trying to build in rest times the day before and the day after a big event. Trying to treat myself with the same compassion and kindness I so easily share with those I love.

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.