Month: July 2021

Surviving and Thriving

Posted on by wkennar

When it comes to the most important roles in life (in my opinion – spouse and parent) no one gives you a handbook with practical, helpful tips and tricks.

And so it was when I received my autoimmune disease diagnosis. My rheumatologist gave my illness a name, and started me on medication, but he didn’t provide any advice on what it would mean for me long-term, what I should do that day, and the day after, and the day after that one.

Thankfully there are other patients out there, telling their stories and sharing their experiences. 

I recently read Ilana Jacqueline’s Surviving and Thriving With an Invisible Chronic Illness: How to Stay Sane and Live One Step Ahead of Your Symptoms.

It is the book I wish my doctor had handed me that November morning all those years ago. 

While I admit some of the advice and some of the anecdotes don’t apply to me (I’m not trying to decide if I can move out of my parents’ home, for example) I’m still glad I read it. And as you can see from the photo, I still found a number of passages to highlight and mark with sticky notes.

For example:

“Life with chronic illness is about managing expectations while keeping the hope alive enough to still make plans for the future.” (So beautifully put)

“Chronic illness isn’t something you beat or fight. It isn’t a race or a life-long quest to return to normalcy. You don’t reverse, battle, or spar with it. Chronic illness is something you outsmart.” (I haven’t figured that part out yet. I admit, most of the time I’m still trying to resist my chronic illness, still trying to prove I’m tougher and stronger than it is.)

“Acceptance isn’t defeat: It’s a declaration of self-respect under irrefutable circumstances. This is where you are and you’re going to make the best out of every moment of it.”  (I had never thought of acceptance in terms of self-respect.)

“Learning how and when to ask for help is going to be a huge asset to you in life.” (I continue to struggle with this one.)

“It is your body and your responsibility to treat it with confidence, intelligence, and above all, compassion.” (An important lesson for every human being.)

Prime Time or Off-Peak?

Posted on by wkennar

“The other night I sat on the couch as my husband stood behind me and brushed my hair. I told Paul I felt like I was slowly falling apart. I was becoming just like one of my Grandma’s purses.

‘What does that mean?’ Paul asked.

‘My grandma never liked to get rid of a purse. She’d tape the handles, because the rest of it still worked. It wasn’t ripped. The zipper worked. Just the handles were breaking. She’d use a taped-up purse,’ I said. 

‘That’s who I’m becoming,’ I said.

‘No you’re not,’ he said. 

But it’s how I felt just then. And it’s how I feel a lot of the time. Parts of me work just fine. Other parts, specifically my left leg, is more like the taped up handles – kind of working, kind of getting the job done.” 

The paragraphs above are from my recently published essay “Prime Time or Off-Peak?” (It was written last year so I must now let readers know my son is thirteen, and not twelve. Which means I’m forty-five, and not forty-four, as stated in the essay.)

You can click here to be re-directed to Kaleidoscope Magazine Number 83. My essay is on page 62.

There Is No Shame

Posted on by wkennar

Did you know July is Disability Pride Month?

I didn’t. 

Maybe it’s because I don’t feel pride when it comes to my invisible disability.

It’s more like resignation. Sometimes.

And sometimes it’s denial.

I don’t really know what it is, honestly, because having an invisible disability means I have a complicated relationship with my body. 

It’s a relationship that requires me to learn, and re-learn, what it means to be brave, to be strong, to be courageous, to ask for help, to say no.

And I have learned that just because it’s complicated and confusing, doesn’t mean it’s something I need to hide. Because the fact is, my invisible disability is a part of who I am. And it’s not going anywhere. And neither am I.

On that note, I’d like to share a link to a post I wrote last year for The Mighty. I think its message is an appropriate way to acknowledge Disability Pride Month. 

Click here to read my essay “There Is No Shame in Life With Chronic Illness.”

Books, Books, and More Books

Posted on by wkennar

Last week, I did something I haven’t done since early 2020.

I went inside my public library.

During the pandemic, I was lucky enough to still be checking out books from my library, but through a system of reserving specific titles and arranging a day and time to pick them up.

But the library is open again. Open for leisurely browsing. For stocking up. For being in awe of the sheer number of books I have yet to read.

I first thought I’d go into the library with no plans. Just me, my library card, and my empty tote bag. And I’d stroll among the shelves, picking up books, reading the summaries on the back cover, and bringing home as many books as I wanted. (Or as many as I could carry in my bag.)

But then that thought made me feel a bit overwhelmed. There is such a thing as too much choice. 

So I handled the visit to the library the same way I handle my grocery shopping.

It’s considered foolish to grocery shop on an empty stomach. I thought the same rule should apply to me in a library. I was hungry for books. For the freedom to walk in and pick up books because something — a cover, a title — caught my eye. 

So I made a list.

I went online and accessed the library’s catalog. And wrote down the call numbers for books that had been on my “want-to-read” list. I limited myself to eight books. (I’m not sure how I settled on eight, except that ten seemed too many, and eight seemed close enough to ten.)

I went to the library and made my way around the shelves, gathering my books, until my bag was heavier than I expected (I didn’t realize one book was a hardcover and over 400 pages long). 

And I came home happy. With eight books including memoir (Trevor Noah’s Born a Crime: Stories From a South African Childhood), poetry (Mary Oliver’s Devotions), and fiction (Linda Holmes’s Evvie Drake Starts Over) to name a few.

Libraries are open again, and in case you couldn’t tell, I was smiling under my mask.

(The public library still requires patrons to wear masks in consideration of the younger readers who don’t yet have access to a vaccine.)