invisible disability

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.

Kissing Kosher

Posted on by Wendy Kennar

Here’s what you should know about Kissing Kosher by Jean Meltzer.

It’s a rom-com. A delightful rom-com.

But even more than that — the protagonist, Avital Cohen, happens to be a Jewish woman who lives with a chronic illness and chronic pain. And for that I applaud Ms. Meltzer. (I have written about Ms. Meltzer’s first two books in previous blog posts, which you can read here and here.)

While the rom-com was fun to read and provided me with a fantastic escape from real life, it was the very real, very relatable aspects of Avital’s chronic illness that I most resonated with. 

Here are just a few of the passages I marked with sticky notes:

“She got used to disappearing into the ceiling while doctors poked and prodded. That was the funny thing about chronic pain. It didn’t disconnect her from her body. Instead, it made every single second of her life about her body. She couldn’t escape the never-ending reminders of her pain if she tried.”

“Like many folks dealing with the onset of chronic illness, she had hope — this great and unfettered optimism — that she would one day wake up normal again if she could just find the right treatment.
“There was no cure. While some of the treatments helped, nothing completely eradicated the constant ache she lived with. There were bad days and better days, but rarely did she experience pain-free days.
“Despite all her best efforts to win the war against her own failing body — despite the fact that she was trying not to make her disease her identity — she kept getting worse. Some nights, the fear that accompanied the realization that nothing she did was working was more awful than the pain itself.”

“People always say, Don’t make your disease your identity. And you know what, Josh? I hate that statement. I think it’s the most ableist thing I’ve ever heard. The very definition of chronic is that it’s every day. It’s something I will have to negotiate, and manage, for the rest of my life. It touches everything.”

“But mainly, the most important thing I’ve realized is that if I’m going to be in pain the rest of my life, then it’s even more important that I hold on to my joy. I need to create the life that makes me happy. So that when the bad days come, because they will keep coming, Josh … they don’t hurt me as much.”

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.

Trying to Figure Out This Spoonie Life

Posted on by Wendy Kennar

Lately, I have been thinking a lot about the term “spoonie.” 

The term “spoonie” comes from the Spoon Theory, both of which are familiar terms if you’re a member of the chronic illness community. Basically, the Spoon Theory is an analogy used to describe the amount of physical and mental energy a person has available each day. The theory was developed by Christine Miserandino. While out to lunch with a friend, Ms. Miserandino used the spoons on the table to explain to her friend what it’s like to live with a chronic illness, in her case lupus. Each spoon represents a finite amount of energy. Each day you may wake up with a different amount of spoons, yet there are still certain tasks that are expected to be completed on a regular basis — showering, getting dressed, preparing a meal. While a healthy person may begin the day with an unlimited amount of spoons and uses only one spoon at a time for the most basic tasks of the day, a spoonie may start the day with only five total spoons and has to make decisions about which tasks absolutely must be completed that day and which tasks can be skipped. Because when the spoons are gone, so too, is a person’s energy to do anything else. 

For a long time, I didn’t consider myself a spoonie simply because I didn’t have the option of paying attention to my lack of spoons. My son still needed to be picked up from school, library books needed to be returned, dinner needed to be prepared. 

Though I have spent more than a decade as a chronic illness patient, I still haven’t figured out when to push through and do something despite my pain and fatigue and when to pay attention to my body and acknowledge I just can’t do something.

It’s not easy navigating this life. Thankfully, I have help.  

Last week, I had a Zoom conversation with Sandra Postma, a Book and Spoonie Coach, offering “guidance for writers with a chronic or mental illness or disability.” This was our second session, and as with my first session, I left this session thinking about a couple of re-framing statements Sandra shared with me. 

This week, I’d like to share two of Sandra’s brilliant statements with you:

“I am not a burden, my illness is.”

“Alongside my illness I am ..”

I’m thinking a lot about these statements. Thinking about how I can use these statements to help me be more kind and gentle with myself. 

Maybe they will help you, too. 

(Just so you know – Sandra knows I’m sharing this information and has given her consent for this blog. You can learn more about Sandra and the work she does on her website.)

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.  

It’s Pain Awareness Month

Posted on by Wendy Kennar
This picture was taken in July 2023, when our family was in Washington, D.C. I was super excited to explore the National Air and Space Museum, a museum I had wanted to visit since I was an elementary school student. And if you look closely, you’ll see I’m using my rented wheelchair as a walker. I didn’t cancel this trip because of my pain, because for me, that was “not an option.” (Taken from the famous words “Failure is not an option” spoken by Gene Kranz during the Apollo 13 Mission.)

September is Pain Awareness Month.

I’ve written about Pain Awareness Month before, last year in 2022 and back in 2021. 

This year, though, I don’t know what I can write that is new or offers a fresh take on chronic pain. I think that’s largely because I have been trying to deal with increasing pain. Basically, my pain is worse — in intensity and in location. (For many years, pain was limited to my left calf. That is no longer the case. Now, it’s my left calf, my left thigh, both knees, and since about two weeks ago, my left foot.)

This could very easily be a glass-is-half-empty type of blog post. 

But it’s not.

Because my son (now a sophomore in high school) shared something with me the other day that I think is defining worth writing about here.

On the drive home from school, my son told me about what he had to do that day during his Physical Education class. The laps around the track he ran. The stadium stairs he had to climb up and down, up and down, multiple times. 

By the time class was done, he was super uncomfortable. Sweaty. Slightly out of breath. All of which is to be expected.

“I know it’s not the same thing, but my knees were really hurting. It was hard to get dressed and then climb the stairs to my next class. And it made me think that this must be like what it is for you. But like, all the time,” he said. 

And I think my son’s comments truly illustrate the concept of Pain Awareness. No one can ever truly know my pain, but me. But this connection my son made, this attempt at putting himself in my shoes, was a beautiful gift he gave me. 

This Was a Big Deal for Me

Posted on by Wendy Kennar

Something happened a few weeks ago that I haven’t told anyone about. 

Until now.

A few Saturdays ago, I came in from watering the plants on our back patio. (Just to paint the picture — we don’t have a hose out back. Watering the plants requires multiple trips in and out of the house, filling up two watering cans in our kitchen, carrying them outside, back in the house for refills, and so it goes.)

I came back inside after I had watered the last of the plants, and thought to myself, “I feel awful and I haven’t even done anything.”

But what happened next was not part of my usual pattern. Because immediately after that thought, a new thought entered my mind.

“That’s not true. I’ve done a lot.”

And as I put the yellow/green watering can on top of the refrigerator and the smaller, red watering can on the shelf near the refrigerator, I started mentally listing all I had done in the few hours I’d been awake.

Made the bed.

Made breakfast for myself and my son.

Emptied the dishwasher, with my husband’s help.

Got dressed. 

Shredded papers and old bills.

Took out the trash and recycling.

Swept the patio.

Watered the plants.

That pause in my regularly-scheduled-programming — the internal loop that usually plays about my limited stamina and my increased pain — was, is, huge. It’s a sign that I have been working on myself. That I am actively trying to take better care of myself. Because while I know all about drinking water and trying to get enough sleep and taking my meds on time, the mental part of taking care of myself has been more difficult for me.

So I share all this in this week’s blog post because I am proud of myself. My therapist will know what a big deal this was, this is, for me. 

I’m also sharing because I know how much it means to me to come across a piece of writing that speaks of this hard, hard experience of living with a chronic illness and chronic pain. When I read a personal essay that I connect with, that makes me think Yes, That. Absolutely that, I feel less alone in this isolating world of invisible illness. 

It’s my hope this post can be that piece of writing for someone else.

A Safe Space

Posted on by Wendy Kennar

“I foolishly thought having an autoimmune disease would be no big deal. I thought it was something that would fade into the background, behind more important things like my family and career. I thought Undifferentiated Connective Tissue Disease (UCTD) would be another footnote in my medical history, along the lines of my allergy to penicillin. I disclose my allergy any time it’s relevant, explain about the hives that develop, and when necessary, wear a hospital bracelet identifying “allergy.” But on a daily basis, my allergic reaction to penicillin isn’t a big deal. I don’t give it much thought. I assumed having UCTD would work the same way.

Wrong.”

The paragraphs above are excerpts from my personal essay, “A Safe Space.” And I’m proud to share “A Safe Space” has recently been published in Wishbone Words, Issue 11. You can access the issue by clicking here.  (Just a note – there is a slight fee to download the issue.)

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.  

Still Going

Posted on by Wendy Kennar

One year ago, my family and I were in Maui. (If you missed it, you can read my post about our fantastic trip by clicking here. My son took this photo during our zip lining adventure.)

This year, we’re in the almost-done-planning stage of our summer trip, happening later this summer. (I’ll be writing about this summer’s trip in a blog post next month. Stay tuned!)

If I’m being honest, I do have to admit that I am a bit worried.

The truth is I’m very good at keeping it all together, of making my life, my family’s life, look like everything is under control. Because it is — in many ways. But I’m also dealing with incredible amounts of daily pain. I’m trying to get through my days while struggling with high levels of fatigue, unexpected muscle twitches, and knees that make bending painful.

Will I come home feeling more intense pain than I did before the trip? Maybe. But also, maybe not. 

Will I have hours during our trip when my left leg will feel wobbly and shaky like Jello on a dessert plate? Maybe, but maybe not. 

Two family members have voiced their concerns about the trip. “Won’t it be too much for you?” I was asked.

“Probably,” I answered.

But we’re still going. I am not going to let my chronic illness stop me. 

Every Day Resilience

Posted on by Wendy Kennar

“Living with an autoimmune disease has caused me to re-define words I thought I knew. Words I thought I understood. Words like strength, weakness, and pain don’t mean what they once did. Their definitions have grown and expanded, because living with a chronic illness causing chronic pain is hard. And I’m doing it every day.”

The paragraph above is an excerpt from my personal essay, “Every Day Resilience.” I am pleased to share that my essay has been published in Fahmidan Journal Issue 15: Thyroid and Autoimmune Warriors. You can click here to read it in its entirety.