Surviving and Thriving

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?

“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

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

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.)

A Soft Strength

Fairfax High School Senior Year Photo, Class of 1994

“For years, I used my hair as a diversion.

It began with my ponytail phase. Every picture in my mom’s photo album shows me with my hair pulled back into a ponytail. The photos didn’t capture the back of my head and the way I carefully color-coordinated my ponytail holder with the day’s outfit.

When I entered my teenage years, I attempted to dress my hair with a variety of colorful clips and barrettes. I hoped to turn eyes away from the red pimples on my forehead and cheeks. 

By my senior year in high school, I had grown my brown-M&M-colored hair down to my waist in hopes of distracting from the worsening acne on my face.” 

The paragraphs above are from my most recently published essay, “A Soft Strength.” You can click here to be re-directed to HerStry and read the essay in its entirety.

Thinking Pink Means Reading Pink

It’s June 23rd which means it’s National Pink Day. A day to celebrate “all things pink.” 

Some might think of the color pink and think of baby girls or cotton candy. 

Some might think of the singer and songwriter.

And others might think of Elle Woods and Legally Blonde

I learned about National Pink Day and thought of books. 

Here are some of my favorite pink books.

Beyond the Diaper Bag created by Megan Bekkedahl and Melaina Lausen

This book has a special place in my heart. It was the first time one of my personal essays (“5 Things I Wish Every Parent Knew Before Sending their Child to Kindergarten”) was published in an anthology.

Swapping Lives by Jane Green

A novel I read years ago that takes you on the journey of “What if…” What if you could imagine a different life? What if you stepped into another woman’s life?

The Victoria’s Secret Catalog Never Stops Coming and Other Lessons I Learned From Breast Cancer by Jennie Nash

This book showed me in a big way that authors publish books that are collections of personal essays. I read this book and thought, “Yes, it can be done. Yes, I can write about my autoimmune disease.”

The Pretty One: On Life, Pop Culture, Disability, and Other Reasons to Fall in Love With Me by Keah Brown

Another book that has served as inspiration, giving me a nudge, encouraging me to write my story. 

In case you missed it, you can click here to read my earlier blog post, “Connecting With The Pretty One.”

The Authenticity Project by Clare Pooley

I checked this novel out of the library but enjoyed it so much I bought my own copy to add to my personal library collection.

Keep Moving: Notes on Loss, Creativity, and Change by Maggie Smith

I won an advance reader’s edition from a Goodreads Giveaway (the only time I have won from the many giveaways I have entered). You’ll find my copy is full of sticky notes marking the many encouraging statements. A book I’ll return to again and again.

Chronic Resilience by Danea Horn

I consider it an act of serendipity that I discovered this important book. It is a must-read for anyone living with a chronic illness. (I have read it more than once and emailed a fan letter/thank you note to the author!)

What about you readers? Any favorite pink books? 

Scrabble, Sweet Valley High, and Feminism

I’m always reading. 

I always have at least one magazine going and two books on my bedside table.

And though I’m always reading, I’m forever adding books to my “want-to-read” list. It means I’ll never run out of reading material. But it also means I sometimes read a book after a lot of the hoopla has fizzled out. 

Such was the case with Roxane Gay’s Bad Feminist. Published in 2014, it’s not in the news per se, but many of the topics written about are very much in the news. 

It wasn’t just what she had to say, but how she said it. In one book, Ms. Gay wrote essays on topics such as Scrabble, race, the Sweet Valley High series, rape, and feminism – just to name a few.

This week, I wanted to share some of the passages that stood out to me. 

From the introduction:

“I embrace the label of bad feminist because I am human. I am messy. I’m not trying to be an example. I am not trying to be perfect. I am not trying to say I have all the answers. I am not trying to say I’m right. I am just trying—to support what I believe in, trying to do some good in this world, trying to make some noise with my writing while also being myself: a woman who loves pink and likes to get freaky and sometimes dances her ass off to music she knows, she knows, is terrible for women and who sometimes plays dumb with repairmen because it’s just easier to let them feel macho than it is to stand on the high moral ground.”

From “Typical First Year Professor”:

“This is the dream, everyone says—a good job, tenure track. I have an office I don’t have to share with two or four people. My name is on the engraved panel just outside my door. My name is spelled correctly. I have my own printer. The luxury of this cannot be overstated. I randomly print out a document; I sign happily as the printer spits it out, warm. I have a phone with an extension, and when people call the number they are often looking for me.”

From “What We Hunger For”:

“All too often, representations of a woman’s strength overlook the cost of that strength, where it rises from, and how it is called upon when needed most.”

From “Beyond the Measure of Men”:
“If readers discount certain topics as unworthy of their attention, if readers are going to judge a book by its cover or feel excluded from a certain kind of book because the cover is, say, pink, the failure is with the reader, not the writer. To read narrowly and shallowly is to read from a place of ignorance, and women writers can’t fix that ignorance no matter what kind of books we write or how those books are marketed.”

From “Tragedy. Call. Compassion. Response.”:

“Every day, terrible things happen in the world. Every damn day too many people die or suffer for reasons that defy comprehension.

“All too often, suffering exists in a realm beyond vocabulary so we navigate that realm awkwardly, fumbling for the right words, hoping we can somehow approximate an understanding of matters that should never have to be understood by anyone in any place in the world.”

From “Bad Feminist: Take Two”:

“Bad feminism seems like the only way I can both embrace myself as a feminist and be myself, and so I write. I chatter away on Twitter about everything that makes me angry and all the small things that bring me joy. I write blog posts about the meals I cook as I try to take better care of myself, and with each new entry, I realize that I’m undestroying myself after years of allowing myself to stay damaged. The more I write, the more I put myself out into the world as a bad feminist but, I hope, a good woman—I am being open about who I am and who I was and where I have faltered and who I would like to become.”

Jewels from Cast Away: Poems for Our Time

I admit I’m not a big poetry reader. But there was something about Naomi Shihab Nye’s collection Cast Away: Poems for Our Time that called to me.

How wonderful it is to read the reminder that everyone can do something to help our planet. Everyone has the ability to go out into the world, and at the very least, pick up trash. And everywhere we look, there are stories to be found. 

This week I’d like to share just a few of the jewels in this collection:

From “Three Wet Report Cards on Camden Street”:

“feeling great sadness

for the hard work of teachers

filling in so many little boxes

dreary evaluating and judging

when what teachers love best

is that spark of discovery

that great question

the shy person

finally speaking from the stage”

From “Central School”:

“On top of the can right there, a hand-lettered dictionary,

flipped open to the L page, and every

most important word

of life lined up handwritten — Love, Learn, Lose, Laugh

and thrown away. How could anyone

throw that away? A neat little dictionary —

I took it. Thought about second grade being the 

best grade, how the world opened wide in second grade,

and we stood in dignity reciting poems to one another,

Loving Language, and our teacher Mrs. Lane told us,

Don’t worry if you make a mistake. We had Smile Day.”

And my favorite, from “Nothing”:

“Nothing a child

ever does

is trash.

It is

practice.”

Lessons Learned

“Now, my bandaged leg was tender and sore, and walking was more like a slow, laborious shuffle.

‘I know it’s hard now, but it will get better. This will pass,’ Ryan said. His tone was soft. Soothing.

I bit my lip, took a breath, and smiled.

Those were all the same words I have spoken to Ryan each time he’s been sick. Reminders that he’s not alone. Reminders that I’ll see him through it. Reminders that the discomfort (whether it was a high fever, a bout of vomiting, or a hard coughing) would pass and wouldn’t last forever.”

The passage above is taken from my personal essay, “Lessons Learned,” a reminder that our children are always watching, always listening, always learning from the adults in their lives. I’m proud to say my essay was recently published at MUTHA Magazine. Click here to read the essay in its entirety.

Still My Hands

(One of my most favorite bulletin boards. Just one student’s handprints wouldn’t have been nearly as spectacular. But working together, every student’s handprints creates a beautiful rainbow!)

I’m pleased to share that my essay “Still My Hands” has been published in Issue V of ang(st): the feminist body zine.

Here’s a snippet of my personal essay:

“My hands will never again staple and design a bulletin board display. My hands will never write-out desk name tags or “happy birthday” certificates. My hands will no longer grade weekly spelling tests. Those days are memories of another time of my life, another identity.”

You can click here to be re-directed to ang(st) and read the essay in its entirety.