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.”
I am pleased to share that my personal essay, “Chronic Illness, Chronic Pain, and Gold Stars,” has been published in a new anthology, Chronic Poetics. “The book contains artwork, essays and poetry written entirely by people who have experience of chronic pain and chronic illness.” Each piece of writing has been “arranged and visually interpreted,” making it possible to create an anthology that tells a “visual story as well as a literary one.”
I’d like to share two excerpts from a section near the end of my essay:
“I wish someone had handed me a manual of some sort. My car came with one. The new little handheld vacuum I recently bought came with one. (I don’t remember the last time my trunk looked so clean.) But no one told me how to navigate living with a chronic illness. No one pointed out that a chronic illness is one thing. A chronic illness causing chronic pain is something else.”
“There are moments I want to cry. Moments I want to scream. Moments I want to throw things and break things. Because this is hard. And it’s tiring. And it often doesn’t feel like it gets any easier or any better.”
You can find more information about the anthology here.
(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.
WendyKennar.com 