Month: January 2024

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.  

The Book of Annie

Posted on by Wendy Kennar

Maybe you’re a Seinfeld fan and you remember Annie Korzen from her role as Doris Klompus. Or, you’re on TikTok and you’ve seen Annie’s humorous videos there.

I know Annie Korzen, but not because of Seinfeld or TikTok. On multiple occasions, we have sat and chatted. And though I knew many things about her, reading her memoir The Book of Annie: Humor, Heart, and Chutzpah from an Accidental Influencer has helped me learn even more about her.

The Book of Annie is described as “wildly funny musings from an 83-year-old TikTok sensation.” 

This week, I’d like to share just a few of my favorite passages:

“I hope these musings will not only make you laugh, but also make you a better human being, because, wonderful as you already are, we can all benefit from an occasional upgrade.” (From the Author’s Note)

“I admit it: I am often guilty of being a nagging wife. I constantly remind Benni to watch his diet and do his exercises. I guess I’d rather be a nag than a widow.”

“Being a parent is a Catch-22. Your main job is to prepare your kids to separate from you, while your main instinct is to keep them as close to you as possible.”

“The great irony is, my first serious love was a Black guy I went to college with. But if I had married Billy, I would have been part of an interracial family, and who needed that challenge? It’s tough enough just dealing with all the Jew crap.
“Isn’t life strange? I thought I didn’t want to be a grandmother, and I thought I didn’t want to be part of an interracial family. But when those things actually happened, everything fell into place. So, just like with that Jewish wedding, maybe what we think we want or don’t want has very little to do with what really makes us happy. And who knows? As the world keeps evolving, maybe by the time my precious Max grows up, he might be able to walk down a dark street without anyone feeling threatened — or anyone threatening him.”

“But my favorite kitchen time-saver is my husband. Several years ago, I announced that I was retiring from all food-preparation duties and that it was now his turn. I’m proud to say that Benni has stepped up to the (dinner) plate. He will throw together some grilled salmon, roasted garlic potatoes, and a tossed salad without complaining, and will even sort of clean up afterward. Sometimes you just get lucky.”

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 Word for the Year

Posted on by Wendy Kennar
Photo of bright blue sky and two palm trees
Photo taken at the beach on New Year's Day 2024

Last week, I read a blog post written by writer and book coach Monica Cox. She wrote about picking a word for 2024, a word that is in sync with her goals for this year.

It got me thinking. I’ve never chosen a word for the year. Yet, as I was about to do my daily five-minute writing exercise, a word suddenly popped into my mind. A word that perfectly matches with my goals for the year — writing-related goals as well as life-related goals.

My word is Share. 

2024 is the year I will query agents, the first step in sharing my memoir-in-essays. 

An agent will then help my manuscript reach publication, which will allow my story of living with an invisible disability to be shared with readers. 

I am ready to share my story, ready to make the invisible visible.

And, there’s another way I hope to share this year. 

I am working on more openly sharing my feelings. Instead of biting my tongue and holding things in, I will try to honestly share what I’m really thinking and how I’m really feeling. 

My tendency to not always share is a result of my inclination to keep the peace, to not upset anyone. I keep so much inside, trying to pretend I’m feeling better than I am, trying my best to take care of those around me.

But, in 2024 I aim to share — my pain, my feelings, my story.

Dear Readers, do you select a word for the year? If you feel comfortable, you can “share” your word in the comments. Thank you!

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.