Stop Calling Me ‘Weird’

Now that’s a weird sight.

What does “weird” mean to you?

I think it’s weird when I walk into Trader Joe’s and find there are no flowers for sale.

I think it’s weird when I’m scanning through the radio stations in the car and hear the same song playing on two different stations at the same time.

You may think it’s weird that I even listen to the radio.

Back in September of 2018, I wrote a blog post after my rheumatologist called me weird.

This week, it’s a blog post about a different doctor but the same adjective.

I met with a doctor specializing in chronic pain management.  I didn’t go into the appointment with very high hopes.  After all the doctors I’ve already met with and all the tests I’ve already had, what could this doctor have to tell me?

Well, she told me that my pain doesn’t follow predictable patterns.

I knew that.

She told me she’s not quite certain what’s going on in my body.

No one really is.

She hypothesized and starting thinking out loud about different tests.  I vetoed the nerve conduction test and electromyography.  I’ve done it twice, and all I can say is it felt like a form of torture.

I stood on my toes.  

I stood back on my heels.

I walked down the hallway.  

I crossed my legs.

The doctor reviewed the results of previous MRIs.

And her conclusion?

I have “weird pain.”

I didn’t agree to a new drug.  I didn’t agree to a test that would involve inserting a needle into my spine.

And I didn’t let the tears flow in that exam room.  

I thanked the doctor for her time, and on the drive home, I cried.

I don’t know why doctors think it’s okay to tell a patient they are weird or their pain is weird.  

I’d like to suggest different adjectives:  Abnormal. Uncommon.  Atypical.  Irregular.

At least those adjectives sound more professional, more clinical in nature.

You can click here to read my personal essay “The Hard Realities I’ve Faced After My Doctor Told Me, ‘You’re Just Weird’.”

 

How Much Is Too Much?

Ryan and I at The Huntington’s Lily Ponds

 

9 years.  

Next week, marks the ninth anniversary of my life with an autoimmune disease.

Although at the time, we didn’t realize we were dealing with a permanent situation.  My left calf was swollen.  We thought a visit to the emergency room would make it somehow become un-swollen, and that would be that.

How wrong we were.

9 years later, a lot has changed.  I’m no longer a classroom teacher.

But the part that hasn’t changed is my desire to be an active, engaged, loving mother.  For me, that means I make chocolate chip cookies for dessert a few times a week.  (Disclaimer – they’re the Pillsbury, pull-apart-and-bake-kind.)  And for me, that means every summer is full of what a friend of mine refers to as “field trips.”

My son and I (sometimes with my husband, sometimes with my dad, and oftentimes just the two of us), venture around the city exploring different venues and museums.

My son graduated from elementary school three weeks ago, and since then we have been to:  the GRAMMY Museum, the Getty Center, the Aquarium of the Pacific, Discovery Cube Los Angeles, miniature golfing, the library, and the beach (twice).  

The one that did me in, that almost brought me to tears (of pain and sadness and frustration) was our visit to The Huntington Library, Art Collections, and Botanical Gardens. 

We hadn’t been there in many years.  So many years, in fact, that Ryan had no memory of having been there before.  My husband, son, and I explored for about two-and-a-half hours.  That’s all my legs could do, and that’s all Ryan could do before his energy decreased and his appetite increased, and he was ready to leave. 

I loved being there.  Marveling at one of my favorite paintings, Pinkie, enjoying the colorful sight of the rose garden, thinking of my pen pal while in the Japanese Garden, smiling as we stood beside the lily ponds.  

But we didn’t see all the Huntington has to offer.  

We couldn’t.

I couldn’t walk any more.  The pain was intense.  My knees felt as if someone had whacked them with hammers.  My legs felt weighted down.  My shoes felt like they had magnets attaching me to the ground, making it hard for me to lift my foot and take a step.  

And yet, I had wanted to go there.

I had wanted our family to have this special day’s experience.

But I felt awful, until I went to sleep that night.

Was I glad I went?  Yes.  

Do I want to go back?  Yes and no.  

How much pain do I put myself in, how much do I push myself to see, to smell, to touch, to hear all that I wish to experience even when I know that it is physically difficult for me to do?

Nine years, and I still don’t have the answer to that question.

 

Here’s Why Invisibility Isn’t Always a Super Power 

My son and I playing handball. Disabilities don’t all look the same.

Close your eyes for a moment and picture a disabled person.  Keep that image in mind.  

What does she look like?  

How does she behave?  

What can she do?  

What can’t she do?  

What does she need help with?

 

Now, tell me if these descriptions match the picture in your imagination:

A woman and her son ride their bikes in their neighborhood.

A woman spends 30 minutes in her garden, weeding, pruning her bougainvillea vine, re-arranging large pots, and then sweeping up the mess she made on the sidewalk.

A woman goes for a leisurely walk in her neighborhood, bending over to smell a light pink rose, stopping to admire a butterfly that is perched on a leaf.

A woman sees her ninety-year-old neighbor arrive home in an Uber.  Her neighbor struggles to hang the grocery bags from her walker.  The woman goes across the street, and carries the bags for her neighbor, helps her neighbor into her house, and brings each bag into her neighbor’s kitchen.

 

What if I told you the woman above was me.  And what if I told you that according to the state of California, I am also a disabled woman.  Do my actions match the mental image you had?

Probably not.  Most people have a very limited idea of what a disabled person looks like.  I know I used to.

Which brings me to my newest essay.  Last week, The Mighty published my personal essay “Why ‘Invisibility’ Is Not a Superpower When It Comes to Illness.”  You can click here to read it. 

And remember, just because you can’t see someone’s pain, doesn’t mean they aren’t hurting.

 

 

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.”