Hoping For Courage

What is going on inside these legs?

Without going into details, I have a medical test/procedure scheduled later this week. 

Here’s what you should know:

I’m living with my autoimmune disease for almost 10 years now. In that time, I’ve already experienced this particular test twice. Each time the results were inconclusive. 

The test is being done a third time mainly for comparison purposes. It’s been a few years since the last test, and doctors are interested in seeing if any changes show up this time around. There are some concerns that my left leg may be worsening. If so, this test may give some clues about what’s going on in my leg.

Aside from the fact that I don’t want to have this test in the first place, I’m not sure what to think about this test and its possible results.

Here’s the dilemma:

Do I want the test to reveal something? To pinpoint a reason why my leg pain is increasing and my leg strength is decreasing? Would this perhaps give doctors a lead, a clue, in terms of more effective treatment? 

But what if my leg does test worse? What would that mean? 

Or, do I want this test to be like every other test I take – indeterminate? Within the boundaries of normal-enough? 

Which is reassuring I guess, but on the other hand it also means it provides doctors (and me) no answers, no explanations, no reasons why I feel the way I feel.

In reality the only thing I can realistically hope for is courage. Courage during the test. And courage after the test. In whatever form I may need it.

 

It’s Complicated – Working with an Autoimmune Disease

When I went to my local library and typed in “autoimmune disease” in the keyword search (I miss card catalogs, by the way), a dozen books were listed.

12 books. And one of them had to do with pet health.

That’s how I discovered Women, Work, and Autoimmune Disease written by Rosalind Joffe and Joan Friedlander.

Both authors live with autoimmune diseases. They’ve been there – dealing with the uncertainties that come with living with an autoimmune disease, the unpredictability, the sheer will it sometimes takes just to get through the day.

But, there were many times I came close to not finishing the book. 

It was written in an overly simplistic, just-keep-going and make-some-changes kind of way. And that doesn’t work for everyone. 

For my readers who don’t know, I was an elementary school teacher, before retiring due to a disability. I taught for 12 years. I had planned on teaching for many more. But teaching doesn’t provide many opportunities for flexible work hours or workplace modifications (topics discussed in this book). 

However, even though I didn’t particularly like this book, I did find passages that caused me to pause for a moment and think, “Exactly.” 

This week I’d like to share these passages with you.

“Autoimmune diseases are fickle, and what might adversely impact your symptoms one day might not affect you the next.”

“It takes determination to look at deceasing possibilities and refuse to crumble. It takes courage to face the loss of what you could do and see opportunity in its place.” 

“Grief is an emotion that is often overlooked when talking about chronic illness, but it is critical to any discussion about living with AD – with translates into learning to live with loss. That’s not to say that there aren’t gains here, too. But loss is inevitable, even at the basic level of not being able to do or feel as you once did.”

“The truth is that no one knows what’s around the corner, but living with chronic illness means that unpredictable health is more likely.”

“On the days when you feel your worst, you can look fine. You don’t sport the red nose of a cold or the cast of a broken wrist to support your case. Because you look the same as you do on your good days, you wonder if people understand the symptoms that they cannot see.”

“It’s undeniably true: your illness has changed the way you view your world and your life. It has quite literally transformed your physical capabilities – at least for the short term – and has most likely altered your perception of yourself.”

 

Giving Thanks to These 5

Each Wednesday, I publish a blog post on one of three subjects: books, boys, or bodies (specifically living with an invisible disability).

Beyond the post you read, though, there are the behind-the-scenes people that make this blog and this website possible.

Today, the day before Thanksgiving, I give thanks to:

  1. My son.  My eleven-year-old son is my greatest inspiration. The questions he asks and the ideas he shares have served as the inspiration for many of my blog posts and personal essays. 
  2. My husband.  It was my husband who first encouraged me to start my own blog. It was right after we had seen the film Julie and Julia. It was the nudge I needed to start to prioritize my writing and my writing time. And, he often serves as my photographer for my blog posts.
  3. My mom.  My mom has always been my proofreader. Since I can first remember writing school reports back in fourth grade, it’s been my mom who checks my spelling, my punctuation, my grammar, my lucidness. Though I may be in my forties, and not a fourth-grader any more, I still look to my mom to proofread each blog post before it’s published. 
  4. My dad.  Over the years, it’s been my dad who has shared his extra office supplies with me, which I gratefully accept. Every writer needs a stash of highlighters, binders, and printer paper. 
  5. My readers.  I am proud to say I have readers around the world. People I know and people I don’t know. Some of you comment on the site, some of you send me personal emails commenting on something you read. A few of my former students have found me via this website and sent me emails recounting their memories in my classroom. Those emails make my heart swell. 

My first blog started all those years ago, as a way to take my writing seriously. A self-imposed deadline. Since then, it’s become so much more than that. 

I’m not just writing. I’m being read. 

And for that, I am very thankful.

Here’s Why I Have a Complicated Relationship With My Legs

Do you have a body part, that only now, a bit later in life, you have learned to genuinely appreciate? A body part you now realize wasn’t nearly as “bad/flabby/unattractive/you-fill-in-the-adjective” as you used to think?

I have a complicated relationship with my legs, because sometimes they just seem like these “things” that are disconnected from the rest of me.  These limbs that aren’t behaving the way I want them to.  These appendages that are causing me nothing but trouble and pain.”

The paragraph above is taken from my recently published essay “Why My Rare Condition Puts Me in a Complicated Relationship With My Legs.” Click here to be redirected to The Mighty where you can read the essay in its entirety. 

 

Slow and Steady

Galápagos Tortoises at the San Diego Zoo

 

Each morning, my fourth and fifth grade students began the school day writing in their journals, answering a prompt such as “What animal are you most like? Why? 

Lately, I find myself thinking about that prompt and wondering. 

What animal am I most like? 

I don’t know. I can’t narrow it down to one animal that is most similar to the person I am on a daily basis. Maybe because I feel like a slightly different version of myself each day, throughout the day.

And so begins my most recently published personal essay, “My Slow and Steady Path Forward With an Invisible Disability.” Click here to be re-directed to The Mighty and read the rest of the essay. 

Readers, I’m curious.  What animal are you most like? Why?”

I encourage you to share your responses in the comments section.

Announcing My Motto for Life

July 2019 – A memorable morning; a perfect example of “stubborn gladness”

I think I’ve discovered my mantra, or as close as I’ll get to having a mantra.  

Maybe mantra isn’t the right word.  

My motto. 

My slogan.

My maxim. 

Stubborn gladness.”

I discovered this delightful phrase while re-reading Elizabeth Gilbert’s Big Magic: Creative Living Beyond Fear. 

This was my second read of Ms. Gilbert’s book.  The first time was three years ago.  That time, I read the book, used my highlighter to mark “stubborn gladness,” and that was the end of it.

This time, “stubborn gladness” grabbed me.  It stopped me from reading.  I attached a purple Post-It to the page.  And, surprisingly, it’s been my biggest takeaway from this read.

Ms. Gilbert explains that it is her destiny to be a writer.  “I’ve decided to meet that destiny with as much good cheer and as little drama as I can – because how I choose to handle myself as a writer is entirely my own choice.” 

She goes on:  “My ultimate choice, then, is to always approach my work from a place of stubborn gladness.” 

This time, when I read that passage I immediately saw its relevance to my life with an invisible disability.

I certainly don’t approach doctors’ appointments, lab work, and MRIs with “stubborn gladness.”  

And there’s nothing “glad” about daily pain.

But I most definitely, absolutely, positively approach my day-to-day life with “stubborn gladness.”

That’s the reason why I do the things I do.

The reason why I bought myself a new bike.

The reason why I go for neighborhood walks with my son and coffee walks with my husband.

The reason why I went horseback riding this summer.  (Before he started preschool, we took Ryan to Disneyland for a “big adventure.”  It’s the one and only time he’s been.  The summer before he started kindergarten, we took Ryan on his first hotel trip, spending a few days in Cambria, California.  This summer, before starting middle school, Ryan chose horseback riding as his big adventure.)

I do these things, big things and little things and everything-in-between-things with “stubborn gladness.”

Because I can’t change my health.  I can’t make my autoimmune disease go away.  I have to learn to live with it, to handle it, to live with my life as fully as I can – with “stubborn gladness.”

10 Tips and Tricks for Parents With Invisible Disabilities

Don’t forget to take care of yourself and show yourself some love!

 

I’m the proud mother of an 11-year-old son. I’m quick to boast, and tell you about Ryan’s curiosity (he asked me what the nurse does with his blood after a blood test.  In all my years, I had never thought to wonder). I’m quick to brag about his kind heart (without prompting, the way Ryan holds Grandpa’s hand while walking through a museum, and slows his steps down to match Grandpa’s). I’ll smile and tell you how Ryan loves to dance and sing and is equally entertained by the Beatles, Stevie Wonder, Justin Timberlake, and Prince.

But I’m not as quick to talk about myself. I don’t immediately tell people about my invisible disability, the rare autoimmune disease coursing through my body (and on bad days, I think it’s cursing my body). It’s called Undifferentiated Connective Tissue Disease and has overlapping symptoms of lupus, myositis, and rheumatoid arthritis.

Those words begin an essay recently published at Mother’s Day Magazine.  I have been living with my autoimmune disease for nine years.  There are moments when I think I’ve figured things out, I’ve got a handle on things.  And then there are the moments when I feel so confused, so sad, so frightened, so much pain that I just want to sink to the floor and cry. 

But I can’t.  

Because I have an 11-year-old son who needs to be fed; who needs to be taken to school, the library, and the dentist; who needs me.

So, I have developed a few “tricks and tips” that help me get through the day.  Click here to read “10 Tips and Tricks for Moms Living with Invisible Disabilities.”  (Here’s one I’ll share right now – Eggo Waffles count as dinner.)

 

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.