chronic disability

Disability Pride Month

Posted on by Wendy Kennar
Parasailing in Maui with my son, June 2022

July is Disability Pride Month. The designation coincides with the anniversary of the Americans with Disabilities Act (ADA) being signed into law, thirty-four years ago. 

In prior years, I’ve written about Disability Pride Month. (You can click here to read my post “There Is No Shame” from July 2021, and click here to read “Disability Pride Month Reading” from July 2022.)

This year, however, I’m having a really hard time putting into words how I feel about this month and how it impacts me. Partly because within the last couple of years, my physical abilities have decreased, and my dis-abilities — things I can no longer do or only do with extreme pain — have increased. 

I live with an autoimmune disease that most people have never heard of, that most healthcare providers don’t fully understand. A chronic illness that has no cure. And it is this part of my identity that is the catalyst for my currently-querying memoir-in-essays. 

One day, when you pick up my memoir in your local independent bookstore or public library or multi-floor Barnes and Noble and begin reading it, you will find that my disability identity is only a part of my story. I’m so much more than my body and how it can and cannot function. 

I am Wendy Kennar.

I am a white woman married to an African-American man. 

I am the mother of a mixed-race son.

I am a college graduate, the first in my family.

I am a ketchup-using tomato-disliker.

I am a morning apple juice drinker.

I am a night shower-er.

I am a handwritten list maker.

I am an envelope decorator. (Which means I am someone who still mails cards and letters the old fashioned way, with a stamp on the envelope.)

I am a save-the-avocado-for-last salad eater.

I am a chocolate ice cream only consumer (except if I’m eating a Vanilla Soft Serve ice cream at McDonald’s, which is the only thing I eat from McDonald’s.)

I am a daughter. A pen pal. A friend. A neighbor. 

I am a Los Angeles native.

I am generally a no-crust-for-me pizza-eater.

I am a woman who has never spent any time in the snow. 

I am a woman who owns more pairs of earrings than shoes. 

I am a curious person, who wonders about all sorts of things. (Why do you walk a red carpet at awards shows? Why red? Why not blue? Or purple?)

I am adventurous. (I have gone parasailing twice, ridden in a hot air balloon twice, and gone zip lining once.) 

I am a disabled woman. 

But that’s not all I am. 

There’s A Lot On My Mind

Posted on by Wendy Kennar

I have a bit of a confession to make, my friends.

This week’s blog post has been a hard one for me to write. And I think it’s because of the date. 

This week is an “anniversary” for me. It was during this week back in 2010, when I woke up unable to get out of bed. I couldn’t stand up. I couldn’t walk. My left calf was swollen like an about-to-burst water balloon and bright red, like my then-two-year-old son’s stuffed Elmo doll.

That day marked both an end and a beginning. I just didn’t know it at the time.

So I’m a bit emotional, and I have all sorts of things going through my head this week. Thoughts about where I am currently — in terms of my physical pain and limitations, but also in terms of my spirit and emotional well-being. 

It’s because I have all these thoughts swirling around, like a soft serve ice cream that mixes chocolate and vanilla into one delicious, twisty dessert, that I initially wasn’t sure what I wanted to write about this week. 

But I think this reflection is fitting for this week:

A few days ago I finished listening to Jessica Fein’s podcast, “I Don’t Know How You Do It.” Her guest was bestselling author Jean Meltzer, someone I happen to just love — for her books and her passion and her message. 

(In case you’ve missed them, you’ll find links to my earlier Jean Meltzer-related posts here.)

On this podcast, Jean explained the twists and turns her life has taken, the many ways she has had to completely reinvent herself. 

There were a couple of things Jean said that I haven’t been able to stop thinking about. Maybe they’ll be helpful to you, too:

–  One: Jean talked about the years she spent ignoring her illness. Her determination to continue on, pretending as if she wasn’t ill. Until she couldn’t. Until she became so ill, she was housebound. In all honesty, I have heard Jean speak of this before, but this time I really heard her. And it scared me. Because one of the things I’m actively working on is truly acknowledging my own illness and physical limitations. I often do try to push through and act stoically. What if I’m headed on the same path? What if you only get a certain number of “passes” to act as if you aren’t chronically ill, and then your body comes to a full and complete stop? (Which is actually what happened to me back in 2010. I wasn’t physically ill at that time, but I was going through an incredibly hard time emotionally. I kept trying to push through, until I literally couldn’t. That swollen left calf kept me hospitalized for four days, and my leg was never again the same.)

– Two: Jean also spoke of her decision to live a joyful life. If her body would no longer allow her to do all she wanted, if her body made it necessary for her to re-invent herself and give up her career, then she was going to do everything she could to seek out joy in this new life of hers. Lately, I have been more aware that I tend to spend some of my days as if the prime objective is to cross off as many items on my to-do list as I can. And while these are not necessarily unpleasant (water the plants, sweep the patio, do my physical therapy stretches), they’re not necessarily joyful either. I often give myself one task to do after the other, without giving myself the time and grace to simply sit and read, for example. 

So that’s my self-appointed homework: being more honest about what my body can and cannot do and to actively seek out and infuse my days with joy. 

Thank you, friends, for reading. I realize this week’s post was a bit longer. Thank you for being with me on this journey.