Last week marked the 6-year anniversary of the day I left my teaching career. I still miss it. But I like to think that I’m still teaching – just not in a traditional classroom – but through my writing and in all my interactions with my son. And I’m still learning. In fact, living with my autoimmune disease has taught me some surprising, unexpected lessons. Here are 5 Things I’m Learning From My Autoimmune Disease.
Small pills aren’t always easier to swallow.I take a lot of pills each day; both prescription medications to try and control my body’s inflammation as well as over-the-counter supplements. Pills come in different sizes. Some are taken with food. Some without. Some are taken every day, at certain times of the day. But there’s one medication I take only once a week. It’s a small pill; probably the smallest pill I swallow. But each Saturday night, I have to take 10 of these little pills. And after a while, those 10 small pills feel more like 10 giant multivitamins.
Being a chronic patient improves my vocabulary and spelling skills.Since becoming ill, I’ve learned about different “-ists” – gastroenterologist, urologist, neurologist, ophthalmologist, nephrologist, rheumatologist. I’ve also been subjected to different “-scopies” – endoscopy, cystoscopy. Many were words I had never heard of before. Some were words I had no idea how to pronounce (endoscopy). And some, I still don’t spell correctly on the first try (ophthalmologist).
I’m willing to have my belly button resemble a volcano.When I was newly diagnosed and desperately trying to hold onto my life and my teaching career, I tried a variety of things on the chance they might help. I bought compression stockings. Didn’t help. I propped my legs up with several pillows every time I sat on the couch or reclined in bed. Also didn’t help. And me, the person who doesn’t like needles, who always looks away when having blood drawn, saw an acupuncturist. I paid her $100 per visit so she would poke me with ultra-thin needles. Occasionally, she also burned Moxa, and once placed it inside my belly button until it looked like a mini-volcano was erupting on my body.And it didn’t help my pain.
A blood clot will seem like an attractive alternative.My illness began on a Sunday morning when I woke up with an incredibly swollen left calf. I couldn’t stand, and once in the ER, all the symptoms (redness, swelling, pain in my calf) suggested a blood clot. I believed that my swollen leg would somehow be popped like a balloon until it was deflated and I was back to normal. It wasn’t a blood clot, and it didn’t return to normal. In fact, while in the ER my calf became more red, more swollen, and more sensitive to touch. Doctors didn’t know why. But a blood clot would have been so much easier. Something that was identifiable, treatable. Something that was temporary. (I was treated for cellulitis, and a year later officially diagnosed with my autoimmune disease).
An invisible disability is like the wind.Invisible forces are powerful. You never see wind; wind is invisible. But you see and feel the effects of wind – wind chimes tinkling, kites soaring, leaves rustling. My invisible disability has the same strength as gale-force winds. It made it necessary for me to retire from my teaching career. It qualified me for a disabled parking placard, though I don’t rely on an assisted walking device and appear to be “fine.”
I have a question for you, dear readers.How would you define “self-care?”
For some, it means a bit of pampering, such as taking the time to get a pedicure or massage.For others, it means doing something just for you, something that makes you feel good, whether it’s sitting down with a cup of hot chocolate and a good book or going for a walk.
But what about people like me?People who struggle with invisible disabilities?People for whom “self care” means something entirely different?
Clickhere to be redirected to The Mighty to read my recently published personal essay, “With Autoimmune Disease, There Are More ‘Self-’ Practices Than Just Self-Care.”
A couple of weeks ago, while at the checkout line, the friendly Ralphs cashier told me I needed to have at least one more child.
She said this in front of my son.
This time around, the cashier is someone we chat with each time we see her.She is warm and friendly with my son.She comments on how tall he’s gotten and asks how he’s doing in school.
But this was crossing the line.
While she scanned my groceries and I bagged them, I tried my usual answer.“We’re blessed with Ryan.”
But she didn’t let it go.“You need to give him a brother or a sister.You never know what could happen to you or your husband.You don’t want to leave him alone.”
I felt a physical reaction, as if I had been punched in the stomach.I know this.It is one of my great fears.
As we loaded our groceries into the car, I spoke to my son about this conversation.“I really like it when we see Dora, but I really didn’t like what she said to us today,” I told Ryan.
I continued.“You know each family makes their own decisions about children.How many to have, or if they’ll have any at all.And each family’s decision is right for them.Our decision is right for us.Daddy and I feel so lucky that our family is the way it is.”
“I know,” Ryan said.
But like I began this post, this isn’t the first time a supermarket cashier has commented on our one-child family status.And even though I’ve dealt with this before, it doesn’t get any easier.
Click here to be re-directed to RoleReboot.orgto read my personal essay, “When A Stranger Told Me I Needed To Have a Second Child.”
“What does the doctor do with all the blood after they check it?”
My son once asked me that question.It took me by surprise and caught me off guard, because it was something I had never considered.
It’s not the only good question Ryan has asked me over the years.There have been so many I wrote a personal essay about them.And I’m proud to say that “Mommy Has a ‘Boo-Boo Leg’: Talking to My Son About My Autoimmune Disease” is now a non-fiction finalist in the Pen 2 Paper Disability-Focused Creative Writing Contest.
Click here to read my essay, and this year, readers may vote for their “audience favorite.” (You must have a free Submittable account to vote).
Thank you in advance for reading and spreading the word!
The other afternoon, my son and I played hopscotch.
That was after we had played handball.
There are a few details that make those statements more meaningful than they may initially appear.
First off, in our neighborhood, we don’t see many parents outside playing with their kids.Where we live, kids are left to wander on their own.Most of the families near us are not only-child families like ours so often times siblings play together, or neighboring kids play together.But the other day, we were the only ones outside enjoying the sunshine so I was my son’s playmate.
Secondly, neither hopscotch or handball are easy sports for me to play.Me, the woman with an autoimmune disease, the woman who qualifies for a disabled placard, the woman who experiences pain in her legs (primarily the left leg).
But my son wanted to play.And I wanted to play with him.So I did, until I just couldn’t.Until I was balancing on one foot, bending down to pick up the rock from the hopscotch square, and pain began to shoot up and down my leg a bit.Then I had to sit the rest of the game out, and cheer on my son while he played alone.
That part hasn’t gotten any easier for me — knowing when to stop and knowing when to say “I can’t do this any more.”Because I do want to play with my son, and because I realize how special it is that my ten-year-old still wants to play with me.
Our afternoon playtime session got me thinking about a personal essay I wrote a few years back that was published at muthamagazine.com.Click here to read, “The ‘A’ Word: Parenting with an Invisible Disability.”
When you first look at the picture above, all you see is a lush, green hanging plant.But if you looked inside, if you looked down at the soil that is hidden by the leaves, you’d find more than a plant.You’d find a bird sitting on her nest.And in that nest, if the bird flew away, you might get lucky to spot the baby birds in there.
A week or so ago, we discovered the nest when I was watering our plants.I accidentally startled the mama bird, and after she flew away, I saw four small eggs tucked into the nest.
Those eggs have hatched, and now this plant on our back patio is home to a bird family.
Yet when you first walk by, all you see is this plant.“Our” bird family is hidden.Just like my autoimmune disease.
It’s funny how the mind works, but discovering this nest, listening to “Tweet Tweet” (my son’s name for the mama bird), has got me thinking about a piece I wrote for MUTHA Magazine. Click here to read my personal essay, “Can Acknowledging My Weakness Actually Be a Sign of Strength?”
My ten-year-old son enjoys reading the “Who? What? Where?” Series.If you’re not familiar with these non-fiction books, they are biographies of famous people (both historical and contemporary figures) as well as books about well-known places and significant events.
On the back cover of each book, is a series of questions related to the book’s subject.This week, I thought I’d borrow that format to share a few things about me:
Who Is Wendy Kennar?
— A little girl who always liked to wear plastic jewelry around the house and pretend she was a movie star.
— A college student who didn’t have a car for half her college years and relied on six buses a day to commute to and from California State University Northridge.
— A mother with an invisible disability.
** All of the above
It’s all true.And you can click here to read my personal essay “Parenting With an Invisible Disability” at MomsLA.com.
I gained a reputation after teaching for a number of years.I was kind.Organized.Structured.Calm.Patient.Loving.
And even though I’m no longer teaching, those adjectives still apply.
But there’s another side of me.The side that is sometimes so frustrated, so beaten-down that I feel like channeling Bill Murray’s character in What About Bob? and letting out a long tirade of curse words.And while I don’t let myself go to that extreme, it still isn’t easy to deal with daily pain and stay calm.
Instead, I write about it.
Click here to be re-directed to The Mighty to read my latest personal essay, “The Words I Use to Describe Life With an Autoimmune Disease.”