dynamic disability

Pain Awareness Month. Again.

Posted on by Wendy Kennar
Oahu, June 2025. This is a photo of a woman in pain.

September is Pain Awareness Month.

I wrote about it last year.

I wrote about it in 2023.

I wrote about it in 2022.

I wrote about it in 2021.

I wrote about it in 2020.

You get the idea. 

Each post shares some variation of the same message:

I live with pain. Every. Single. Day. For fifteen years and counting. 

That’s why it’s called “chronic pain.” It’s long-lasting.

You never know what someone is going through just by looking at them. 

Because during those fifteen years, I have lived. I have made new friends. I have written, and published. I have traveled. I have adventured (horseback riding, hot air ballooning, parasailing – twice, zip lining). I have attended Back to School Nights and Open Houses. I have gone grocery shopping and shoe-shopping for my son. I have attended book launch events and Harlem Globetrotter games. I’ve visited museums and beaches. 

I remember meeting with a neurologist, referred to me by my neurologist-at-the-time. She thought this other doctor could look at my medical records and give us a fresh perspective with another set of eyes. 

Instead, this fresh-set-of-eyes-doctor was condescending and rude and mean. Before leaving the exam room he patted my shoulder and told me my pain really couldn’t be all that bad if I truly did all the things I told him I do each day.

And that, right there, is the purpose of Pain Awareness Month.

Those of us living with chronic pain have figured out how to navigate our days while struggling with pain that doesn’t ever completely go away. We have developed work-arounds and shortcuts when possible. We have learned to bite our tongue or clench our fists or whatever it is we do that helps us push past the limit of what we thought our bodies were capable of. 

Oahu, June 2025. Same day as the picture above. This is also a photo of a woman in pain. Notice my lips. I often do that when in pain.

Which leads me to this — please, be kind and patient and compassionate toward others. That person walking slowly in front of you could be me. Someone who is walking slowly but it’s the best she can do because each step brings a fresh jolt of pain up and down her leg. 

Or maybe it’s someone whose stomach hurts. Or their head. Or their back. Or their feet. Or their shoulder. Or their elbow. 

I could go on, but you get the idea. 

And, one more thing – this year, I wanted to end the post introducing you to an alternative way to talk about pain. Most of us have experience with the (dreaded) pain scale that depicts faces on a 1-10 scale. And if you haven’t had personal experience with this scale (wonderful for you!), it’s most likely you’ve seen it hanging on the wall in an exam room.

Christina Irene, a hidden disability advocate, speaker, and author, has developed what she calls the “Splat” system. As she writes, “Splat is a system of communication for people with chronic illnesses, mental health diagnoses, and other hidden disabilities. Our conditions are often a ‘moving target,’ meaning we never know how we’re going to feel from one day to the next. The one certainty is: Every day, we feel like we’ve been run over by something.” Check out her website where she has a whole page dedicated to the Splat system, with resources you may find helpful.

Defining Disability

Posted on by Wendy Kennar

The work in my Mastermind program continues. 

Part of our tasks has been to think about what we write and why. (I wrote a bit about this in a May blog post. Click here if you missed it.)

This week, however, I am sharing two photos with you as another example of what I write and why.

The photo shows my seventeen-year-old son and me parasailing, a week-and-a-half-ago during our family trip to Oahu. We calmly dangled 1000 feet above the Pacific Ocean. We talked and marveled at the incredible view below us and around us, noticing the quiet and the sense of peace we felt being that high up.

On that day, in those moments, my body was physically strong enough to climb aboard the boat, maneuver into the harnesses, and smile and wave at those down on the boat looking up at us. 

Yet back at the hotel, my backpack held my blue disabled parking placard. And when I left Los Angeles and arrived in Honolulu I received wheelchair assistance at both airports. (I also had wheelchair assistance at both airports for our return flight.)

Both situations are true. 

I may fit the more narrow, stereotypical idea of a disabled woman when someone sees me sitting in a wheelchair at the airport. 

But, I’m still a disabled woman, even when I’m gliding through the air, with a multi-colored parachute open behind us. 

And that is why I write — to demonstrate there is no definitive, one-and-done definition of disability.

Friends, I’m curious. Have any of you gone parasailing? Where? What was your experience like? Please feel free to share in the comments!

My New Career

Posted on by Wendy Kennar
Image credit: Santa Fe Writers Project

“My son, Ryan, started kindergarten the year I retired from teaching. I took it as a sign, a coincidence worth paying attention to. I spent twelve years teaching, encouraging, caring for, and loving my students. As Ryan was about to embark on his own twelve-year public school career as a student, I hoped he would encounter teachers doing the same thing. I hoped my teaching career counted as a deposit in the good karma bank and that Ryan would be on the receiving end of the dividends.”

The paragraph above is an excerpt from my personal essay, “My New Career.”

And, I’m happy to say “My New Career” has recently been published in Santa Fe Writers Project Journal Issue 32/Spring 2025. 

You can click here to access the entire Issue.

And if you’re short on time, click here to be taken directly to my personal essay.

Though I do hope you’ll have a chance to read through the other pieces in the Issue. There are fiction and non-fiction works as well as poetry, and they all speak to the Journal’s theme of “Renewal.”

My Mind Is Full

Posted on by Wendy Kennar

I had a “difficult” doctor’s appointment last week. 

Actually, I’m not sure difficult is the right word. 

Let me set the stage:

This was my three-month check-in. Basically, because of the medications I take, I need blood drawn every few months. Though I had a 9:00 am appointment, with an 8:45 check-in, my rheumatologist was running late. 

The doctor asked some general questions, but I had come in with a list of concerns and some questions of my own. 

I told my doctor about my fatigue, about waking up feeling unrested regardless of what time I go to sleep and how many wake-ups I have each night. He told me to go to bed earlier and to keep the same sleep schedule seven days a week. I told him neither one was going to happen. (Why wake up at 6:00 am on a Sunday when we have nowhere we need to be at a specific time?)

I told my doctor about the pain. The pain that I carry around every single day. The pain that slows me down, weighs me down, and often makes me feel like I’ve got a wad of gum stuck to the bottom of my shoe, making it difficult for me to walk as effortlessly or as quickly as I would like. 

I also told my doctor about my physical therapy and the progress my physical therapist says I’m making. 

“He says my endurance has improved since we’ve been working together,” I told my rheumatologist. 

“I go for a daily walk, and I use my pedal machine twice a day now,” I said proudly.

“What are you doing while you’re pedaling?” he asked.

“I read, usually. But sometimes I listen to a podcast or watch something on YouTube,” I said.

“You need to stop multi-tasking,” he said. (You may remember my blog post from January, when I wrote about my doctor’s appointment then and Dr. P’s unhelpful suggestions.)

“You need to really focus in on your leg,” he continued. 

I looked at him. Bit my tongue behind my mask. 

He continued, speaking of the increased benefits I would experience if only I would do less, if only I would really “zero in” on my knee and my calf. 

“I think most families multi-task. I don’t know how to get through my day without multi-tasking,” I said.

I went on. “When I go for my walks, I’m not listening to anything. No AirPods in my ears. I’m just walking and staying focused on my surroundings. But at home, I feel safe in reading or listening or watching something while I pedal,” I said.

“You’re not getting the full benefits you could be getting when you do that,” he said.

“Actually, my physical therapist always talks with me when I’m on the treadmill. He said it helps to be distracted, it makes the time go by faster,” I said.

I tried again. “I am in some level of pain every day, all day. I don’t need to be any more focused in on the pain. In fact, I need a break from it. Reading a book gives me a temporary escape,” I explained.

Ultimately it didn’t matter what I said. Dr. P might be pleasant enough, asking about my family, wishing me a good holiday season. But the fact of the matter is he doesn’t get it. Because he’s not living with pain like I am. 

The appointment left me feeling dismissed and blamed. Like the reason I feel as lousy as I do is because I refuse to go to bed at 9:00 pm, or wake up at 6:00 am, or stop reading my novel while pedaling for nine minutes at a time. 

Even if I did those things, he and I both know my pain wouldn’t magically disappear. 

Daily pain is a fact of life for me. No need to concentrate on that sad fact any more than I already do.

To my chronic illness friends – have any of you had a similar experience? Are your doctors talking to you about multitasking and/or mindfulness? Feel free to share in the comments.

As a side note — the appointment made me think back to an essay I wrote several years ago titled, “This Is What ‘Mindfulness’ Looks Like To Me.” I encourage you to check it out. I’d love to know your thoughts about mindfulness.

 

I Am Tired.

Posted on by Wendy Kennar

Eleven years ago, my personal essay “Do What You Need To Do” was published in the anthology Lessons From My Parents:100 Shared Moments that Changed Our Lives. I wrote about the example my parents set for me, the idea that sometimes you just have to suck it up, do the hard thing, keep going. 

That’s largely how I have lived my life. Doing the hard thing whenever I have to in order to achieve my goal — whether it was commuting on public buses for most of my college years (a roundtrip commute that took 3.5-4 hours a day, on six buses a day) or working as a kindergarten teacher during the day with an emergency teaching credential and taking online classes at night to earn my full teaching credential. 

It’s pretty much how I go about my day. Things need to be done. I just need to do them. 

Except, I’ve come to the slow realization that I just don’t think I can keep doing that. 

Because — I am so tired. 

I am tired of waking up each morning, feeling unrested. Sticking my feet into my slippers as the alarm goes off, wondering how I’m going to do it. How I’m going to wake up, get dressed, make my son his breakfast, take him to school, and function throughout the day.

I am tired of not reading as much as I’d like to each day. Which as I write that sentence, I realize it’s not completely accurate. I do read a lot each day. I read emails and text messages, newsletters and first drafts. I just don’t always take a half hour and sit and read my book. Sometimes it’s because I’m in pain, and I can’t get comfortable to sit for an extended period of time and lose myself in the words on the page. Sometimes it’s because I feel there’s too much work that needs to be done for me to take a break and read. When I read in bed shortly before I turn off my bedside lamp for sleep, I inevitably start to doze, and the paperback book slips from my fingers and startles me as it falls against me. (One of the reasons why I generally prefer paperbacks to hardcovers.)

I am tired of looking at myself in the mirror and not fully recognizing the woman looking back. I take stock of the physical changes — hair loss, weight gain, swollen ankles — and realize I have no idea which of my ailments is contributing to each symptom. For example, the hair loss I’m noticing could be due to one of my medications, or my longer hair, or menopause. 

I am tired of clicking on my inbox and feeling so far behind in reading my emails. How did I become someone with three hundred unread emails? Seemingly overnight, I have multiple Substack notifications, emails asking for donations for Unicef, Save the Children, and Make-a-Wish Foundation, and emails regarding the latest sale at Bath and Body Works. I want to support other writers and read their newsletters, I want to contribute  funds to worthwhile organizations, and I want to buy candles when they’re on sale. But it’s so much. 

I am tired of feeling like I’ll never catch up. The list I keep of podcasts I want to listen to (Moms Don’t Have Time to Read Books with Zibby (Owens), Kate Bowler’s Everything Happens, Write-Minded with Brooke Warner) just keeps growing. I listen to one episode over the course of a couple of days while I do my physical therapy stretches and exercises, but in that time, I have added another two podcasts to the list. I sit on the floor in my writing room, looking at all the un-read books I have, just waiting for me, and realize this cubby of mine is almost completely out of space. And yet, I came home with another novel I picked up at the Little Free Library I passed yesterday.

I am tired of waiting. Waiting in line at CVS, waiting on hold to speak to a representative regarding my medical insurance, waiting to speak with someone in my doctor’s office to schedule my next appointment. 

I am tired of the bottles of pills on my kitchen counter. Lining up the bottles based on when I take them — breakfast, lunch, and/or dinner. Keeping track of refills, making sure I have enough to get me through the next several days until the law says CVS can refill my pain medication. Tilting my head back so the large calcium supplement, the most recent addition to my daily pills, will slip down. 

I am tired of heating pads and ice packs. I am tired of propping my left leg up on a pillow. 

I am tired of being in pain. Every. Single. Day.

I am tired. 

Friends, I know it’s not just me. I know many of you reading this post have your own laundry list of illnesses, daily stressors, work-related tasks that you’re tired of also. 

What do you do when it continues to build and you feel like you’re standing in quicksand and being swallowed up by it all? 

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.

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.