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.
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.” Clickhere 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.
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.)
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.
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.
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.
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.
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.
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.”