wheelchair

There Is No Magic Wand

Posted on by Wendy Kennar
Image Credit: Yoocan Do Anything

Back in January, I wrote about my word for 2024: Share.

(If you missed it, you can click here to read the post.)

And so far, I have done quite a lot of sharing — here on this weekly blog, on Instagram where I mostly share about books and my writing-related life, and in the personal essays which have been published in anthologies and journals, both in print and online.

This week, I am pleased to share my personal essay, There is No Magic Wand, has been published by Yoocan Do Anything. 

Here is a snippet:

“I would stop by CVS on my way home and pick up the prescriptions my doctor had called in. I felt confident these new pills would fix the problem because that’s what medication had always done up until that point in my life. 
“I could not have known that when it comes to a chronic illness, such as my autoimmune disease, there is no such thing as ‘fixing the problem.’ There was no pretend magic wand I could wave and make things all better, like I did with my then-three-year-old son when he bumped into a corner of the coffee table. No one could kiss my left calf and make the hurt be ‘all-gone,’ like a Mommy’s kisses often do for their little ones.”

Click here to read the essay in its entirety.

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.

My Current Reality Scares Me

Posted on by Wendy Kennar
My son and I at the National Portrait Gallery during our Washington, D.C. trip this summer.

During the last several months, I have come to a difficult-to-accept realization. Physically, I am not doing well. Honestly, this may be the worst I have felt for a considerable length of time, not counting the times immediately after a medical procedure (like my muscle biopsy). 

Last year, on our family trip to Maui, I reluctantly agreed to use a wheelchair in the airports. A good friend had advised me not to waste my legs walking through an airport and standing in line at security. She was absolutely right. But there was no question that I would walk, hike, and participate in everything my husband and son wanted to do — including parasailing and zip lining with my son.

This year, though, not only did I use a wheelchair in the airports, I also rented one to use during our summer trip to Washington, D.C. 

Since our July D.C. trip, there have been two other occasions when having a wheelchair would have made my life a lot easier. One was seeing Return of the Jedi in Concert at the Hollywood Bowl. The other was attending Back-to-School Night at my son’s high school. Both occasions were incredibly painful for me. Both occasions left no doubt that my legs can no longer do what, up until this point, they have been able to do.

A decade ago, I retired from teaching. And I think one of the reasons I have held on so tightly to all my other roles, all my I’ve-always-done-it, of-course-I’ll-still-do-it instances is because I’m terrified of having to give up something else. I am so frightened that my physical disability is worsening and the invisibility aspect of it will soon no longer exist,  and there will be no doubt in someone’s mind if they see me park in a handicapped parking space that I do indeed need that spot. 

I don’t know if this is true. No one does. In October, I’m scheduled to begin treatment for my knee that may (or may not) help my overall left leg pain. 

Meanwhile, each day feels a bit like an endurance test. A test I’m scared I won’t pass.  

An Anniversary and a First

Posted on by Wendy Kennar
This photo was taken at the National Museum of American History.

Everyone has defining moments. Moments you may not realize are monumental when they’re happening. But later — days, weeks, months, or even years later — you look back at that moment, that significant event and see it for what it is — a distinct, neon-yellow line dividing your life into before and after.

Thirteen years ago, I woke up on a Sunday morning, but I couldn’t get out of bed. My left calf had ballooned, and I suddenly couldn’t do the thing I had done for years — stand up. Next came a visit to the emergency room, a hospitalization, and what would become the beginning of my life as a chronic illness patient. 

Last week, on the anniversary of that defining day, my family and I were on a summer trip visiting Washington, D.C. 

It was a vacation of firsts — the first time we had visited our nation’s capital, and the first time I rented a wheelchair for the duration of our stay.

As I told my son, I don’t know if all future trips will require use of a wheelchair. But this year, it was an absolute must. (I also requested wheelchair assistance in the airports.)

Initially, I didn’t think I would need a wheelchair at all. Then I thought I could just borrow one of the wheelchairs most museums have available for guests. Finally, I admitted the truth — my pain has been incredibly intense, my leg incredibly weak. If my family and I wanted to take this trip, I had to use a wheelchair.

There was one part of me that was heartbroken. All I could think of were the negatives — I’m 47 years old and, for this trip anyway, an ambulatory wheelchair user. My mind went down that scary, dark path — thinking ahead to future trips, picturing myself with increasingly limited mobility.

I made an effort to reframe how I thought about the facts — I’m 47 years old and not letting this chronic illness and my chronic pain stop me from living my life the way I want to live it. I wasn’t going to stay home because I needed a wheelchair. I adapted and figured out how to make this trip work for my body as it is now.

I don’t know. Maybe we’ll look back at this D.C. trip as one of those defining moments — the start of travel requiring a wheelchair. 

But maybe not. 

We’ll have to wait and see next year.

P.S. Lots more to come about this incredible trip. We spent 6 days, 5 nights away from home. We visited museums and memorials. We admired and appreciated. We listened and learned.