A Passionate Life

Four years ago, “A Life of Passion,” a personal essay of mine,  was published on mamalode.com.  (Click here to read it).  I wrote about the big events of 2015 – namely, my mom turning 70 and my son turning 7 on the same day.  I wrote about these two very important people, at very different stages of their lives, each living their days with passion.

And I feared I wasn’t.

Four years later, and in just a few days, my mom is turning 74 and my son is turning 11.  And a few weeks ago I turned 43.

But what has changed?  And what has remained the same?  

Both my mom and my son continue to live passionately.  There is no doubt about it.  They are each taking care of their responsibilities and doing things that make them feel good.

And me?  

I love my family passionately.  I never let my pain, my fatigue alter the way I show my family love.

I think, I hope, I express myself passionately through my writing.  

Amusing to my husband, and annoying to my son, is the way I passionately yell at the TV when we watch basketball, worried when a player hits the ground or when two players begin to exchange shoves and pushes.  

But do I live passionately?  Do I do all the things I’d like to do, or do I hold myself back because of fear, the possibility of “what if…?”  Yes and no.

Sometimes I wonder if I’m the same girl who took belly dancing classes, or went parasailing, or enjoyed a hot air balloon ride.  Am I no longer doing such things because I’m older?  Because I’m a mother?  Because I’m often in pain?  It’s so hard to separate and know which parts of my life would have been different and which would have remained the same had I not become ill.

 

5 Things I’m Learning From My Autoimmune Disease

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.

  1. 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.
  2. 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). 
  3. 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.
  4. 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).  
  5. 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.”

 

Under Self-Attack

 

Time spent by the ocean is always good for my soul.

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?

Click here 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.” 

 

 

In Disguise

Halloween 2008 – Dressed as “Fancy Nancy”

I think Halloween is popular for a number of reasons.  The candy, of course.  But beyond that, Halloween gives us permission to put on costumes and disguises.  To try out new identities, with the safety of knowing it’s temporary.

For some, these costumes, these disguises are a natural extension of who they usually are.  For others, these costumes are a complete departure from their more usual personality.   

For my ten-year-old son, it’s a bit of both.  Over the years, he has celebrated Halloween by dressing up as a firefighter, Michael Jackson, a skeleton, and a magician, to name just a few of his costumes.

As for me, when I was teaching, costumes were primarily about ease and which ones required the least amount of preparation.  Over the years, I was a chef, a golfer, and a baseball player.  One year, my best friend and I dressed as “Fancy Nancy” of the Fancy Nancy books written by Jane O’Connor (which admittedly took a lot more prep, but was one of my favorites!). 

Now though, I feel as if I am always in disguise as I navigate my days as an “undercover disabled woman.” 

In case you missed it from a few months back, you can click here to be re-directed to The Mighty to read my personal essay, “My Life as an Undercover Disabled Woman.”

 

 

Mommy Has a ‘Boo-Boo Leg’

My curious son and I, on the observation area of the Santa Barbara Courthouse. June 2018 (I climbed all the stairs!)

“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!

 

I Can’t – And Here’s Why

A photo taken during my teaching days. After a museum field trip, my students enjoyed rolling down this big grassy hill!

On the second day of this school year, my son’s teacher asked if I was available to help chaperone field trips.  It was before school, a minute before the bell was to ring.  There wasn’t time for me to give her a medical explanation so instead, I gave a quick reply, “It depends.”

How was I to tell my son’s fifth-grade teacher that just because she saw me every day (at drop-off and pick-up times) there were medical reasons why I couldn’t help on field trips.

During the second week of school, my son had his first field trip.  A walking field trip.  Again, his teacher asked if I was available to join their class.  This time, I said, “No I’m sorry.  I can’t do it.”

Which was true.  It just wasn’t the whole story.  And most of the time the whole story is much easier for me to write than it is to say.

Click here to read my personal essay (written when my son was a second grader) that explains “Why I Don’t Volunteer to Chaperone My Son’s Field Trips.”

 

Playing in Pain

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.”

 

Who Is Wendy Kennar?

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.

One Step At a Time

The day a stranger told my husband and me we were walking slowly was the same day I found out I’d earned my “Serengeti badge.”

Now let me explain all that.

For my birthday a few months back, a good friend gifted me her Fitbit Alta when she upgraded to a Fitbit Watch.

I wasn’t sure how I felt about this gift, honestly.  On the one hand, I was curious to learn how many steps I take each day.  But I wondered if this new wrist accessory would show I’m not as active as I thought I was, in which case, my levels of pain and fatigue would be even harder to explain.

Turns out, I usually have one day a week (Sundays) when my step count is lowest.  And, I’ve found out that more steps doesn’t always equal more pain.  There are some days when I have walked more than 10,000 steps (our day at the San Diego Zoo comes to mind) when pain was at a high.  But there are other days, when pain is quite intense and I’ve taken about 6,000 steps.

Walking is my main form of exercise and during the school year, I arrive near my son’s school at least twenty minutes before his dismissal, park my car, and walk through the neighborhood at what I consider a leisurely pace, but apparently what others consider slow.

The other day, my husband and I were strolling hand-in-hand when a resident of a home we walked by was out front and commented that we were walking slowly.  (This isn’t the first time someone has told us that.  You can click here to read my blog post “Change” for more on that story).   

We continued walking, but once we turned the corner, my tears dripped below my sunglasses.  If I walked with a cane, I doubt this man would have commented on my speed.  But because I live with an invisible disability, my pain and struggles are not evident to others.

Then later that same day, I received an email telling me I’d earned my “Serengeti badge”  — meaning I’ve walked 500 miles, the same distance as the Serengeti according to Fitbit.  (Though to be honest, I did wear a Fitbit for a while a few years ago, and I think my new badge is the result of the combination of my old and new miles).

In any event, I think 500 miles is pretty impressive.  500 miles of walking.  Even when I’m hurting.  Even when I don’t feel like walking.  Even when I’m walking slowly.

 

The Words I Use to Describe My Autoimmune Disease

My son and I playing handball

 

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.”