I live with an invisible disability. A chronic medical condition causing chronic pain. An autoimmune disease called Undifferentiated Connective Tissue Disease. My rheumatologist described it as having overlapping symptoms of lupus, myositis, and rheumatoid arthritis.
On any given day, at any given time, I feel exhausted. Depressed. Angry. Confused. Vulnerable. Fatigued. Pissed. Worn-down. Less-than. Weak.
The emotions fluctuate on my day – my activity, my energy, my pain.
But there is one underlying emotion that’s always there. One emotion that serves as the shaky foundation for all the rest.
That is the beginning of my most recently published personal essay. Click here to be-directed to The Mighty to read “What It’s Like To Feel Constant Guilt With an Invisible Disability.”
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.”
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.)
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.
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.
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.
But my worries extend beyond the usual parenting worries.I worry about how my son is being impacted and affected by my invisible disability.
I struggle each day with being honest about my levels of pain and fatigue, because I also don’t want to shortchange Ryan or frighten him in any way.It’s not his fault that I hurt.But “this” (my medical condition) is a part of our life.And most likely always will be.
Ryan often reaches out a hand to help me when he sees me struggling to stand up.He knows, and has known for years, about the bottles of medication on the kitchen counter.In fact, when he was just a toddler he popped a small piece of cucumber in his mouth and chewed and swallowed it with a glass of milk, telling me he was taking his medicine just like mommy.It broke my heart.
But I’d like to think that my son is also being raised to look at people with increased levels of compassion, patience, and acceptance.I hope that my struggles show Ryan that all people struggle with something, even if it isn’t initially apparent.At the same time, I hope I’m also teaching Ryan resilience and tenacity, and that there are many different ways of demonstrating bravery, courage, and strength.
Still I worry.
And then my son will do something that will totally blow me away, will fill my heart with love and pride.And I’ll breathe a little easier, knowing that Ryan is alright; in fact, that he’s more than alright.
When Ryan was a little guy, we would often sing along to songs on my computer, using kitchen utensils as “microphones.”We still sing all the time.In the car, in the house, in the market.But for the last month or so, Ryan and I have again been regularly performing one of our favorite duets, “Ain’t No Mountain High Enough.” I love that it’s still fun for my almost-11-year-old to sing with his mom.And I love that this is one of our favorite songs to sing together.
Because really that is the message I want Ryan to grow up learning.That we are a family.We’re in this together.
“If you need me, call me
No matter where you are
No matter how far don’t worry, baby
Just call my name
I’ll be there in a hurry
You don’t have to worry
‘Cause baby there
Ain’t no mountain high enough
Ain’t no valley low enough
Ain’t no river wide enough
To keep me from getting to you, babe.”
And, if you haven’t seen the 1998 film Stepmom with Susan Sarandon and Julia Roberts, click here to see a fun scene featuring a family sing-along of “Ain’t No Mountain High Enough.”
“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 have a confession to make.I never planned on being a stay-at-home mom.I was a teacher before my son was born, and I planned on being a teacher after my son was born.
At least, that was my plan.
But for those of you who read my blog and know me, plans started to change in 2010 when I became ill.They really changed in 2013 when I retired from my twelve-year teaching career.
There is a lot to read about the difficult decision to become a stay-at-home mom or the equally-difficult decision to return to the workplace.But I didn’t find a lot to read about moms who become stay-at-home moms when it wasn’t their choice.And as much as I love my son, as much as I feel lucky to take him to school each day and pick him up each afternoon, being a stay-at-home mom wasn’t my choice.
You can click here to be re-directed to mother.ly and read my recently published essay, “I Never Planned To Be a SAHM – To Be Honest, I’m Still Adjusting.”
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.”
Last month, my family visited the King Tut: Treasures of the Golden Pharaoh exhibit at the California Science Center.While we marveled at the artifacts (many of which have never left Egypt before), my ten-year-old son, Ryan, kept focusing on King Tut’s young age when he became ruler of Egypt.King Tut was only nine years old, earning him the nickname “Boy King.”
We joked with my ten-year-old son that he was a year behind.Actually, I think Ryan is a great mix of innocent, little boy and mature, young man.But in many ways, I fear that my illness has somewhat colored his childhood, prompting him to have experiences and knowledge I didn’t have when I was his age (and younger).
Because Ryan only knows me as I am now — a mommy who has an illness, whose legs often hurt, who takes a lot of medicines, and who sees the doctor fairly regularly.
It got me thinking of a personal essay I wrote last year for www.Mother.ly. Click here to read, “My Son is Already Becoming My Caretaker – And It’s Both Heartbreaking and Inspiring.”
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?”