“It still isn’t easy for me to describe myself as a disabled woman. For a long time I didn’t think a disabled woman sat on the ground pulling out weeds. Or played handball with her son. Or helped her elderly neighbor carry in groceries. But I do all those things. Because being a disabled woman doesn’t look the same for every woman. And it doesn’t look the same for me each day.”
That paragraph is taken from “It’s Not All in the Family,” a personal essay I wrote that was published in the fall issue of Breath and Shadow. You can read the essay by clicking here.
A virtual appointment with a neurologist, a man I have never met before. This was a doctor my rheumatologist and my neurologist both hold in high regard and wanted me to meet with. For a second opinion, for a different perspective, for a new set of eyes to look at me, my medical history, my test results.
He asked questions, I answered. He looked at my legs over a screen. He asked me to stand and sit and squat and tip toe and balance on one foot. Some things I could do, some I couldn’t.
And after all that, this doctor looked at me across a screen and said, “It’s strange.” (In all fairness, this doctor did refer to my symptoms and labs as strange rather than me.)
I momentarily bit my lip and replied, “I’ve heard worse. Usually I hear the word ‘weird.’ “
This doctor chuckled and said, “Weird works.”
And then I finally did it. I finally had an answer for a doctor in the moment.
“No, weird doesn’t work,” I began. “Because nobody knows what to do with weird. No one knows how to treat weird. No one knows how to help weird.”
A thirty-minute initial consultation with no answers. The doctor needs more time to review my medical history. I need to contact him after an upcoming ultrasound, and then we’ll set up an in-person visit for him to look at and touch my leg.
In the meanwhile, I’m left feeling despondent.
And still with pain in my leg.
You can click here to read “The Hard Realities I’ve Faced After My Doctor Told Me, ‘You’re Just Weird’ “ back in 2018.
September is Pain Awareness Month, a “time when various organizations work to raise public awareness of issues in the area of pain and pain management.”
Have you ever seen that 1-10 pain scale? The one doctors show you, with a range of facial expressions?
I don’t like that scale. And I don’t like being asked to rate my pain.
I remember a visit to a pain management doctor. During the intake, the nurse asked me to rate my pain, right then in that moment. I refused.
I’m usually a very compliant patient, obedient and direction-following.
But, let’s face it. After 10 years of living with my autoimmune disease, I’ve gotten really good at pushing through the pain. I have to. As a result, my pain scale most likely doesn’t look the same as yours. What I now consider a 6, my husband would probably classify as a 10.
Here’s what I can tell you about my pain. It fluctuates. And not just day-to-day. Sometimes hour-to-hour, even minute-to-minute.
In the interest of pain awareness, I thought I’d share just a bit of what my pain is like.
– Sometimes, my left calf is tight. That tight feeling you get before, during, and after a muscle cramp. Except my tightness lingers. For hours.
–Sometimes I don’t have pain. I have a general heaviness. My now twelve-year-old son and I used to play “squish” when he was younger. It was a wrestling-type game that happened either on the floor or on my bed. We’d tickle, but generally he would end up “squishing” me – pinning me with his body. That’s how I feel. Like I’m walking around, cooking dinner, watering my plants, and I have an invisible child strapped across my legs, weighing me down.
–Sometimes I have a throbbing pain. You know that pain you get when you’ve bumped into the sharp corner of a table? You can’t see a bruise, but the area is sore and sensitive and just hurts.
–Sometimes I just hurt. Like I’ve been pricked with needles (and I have been, so I know what it feels like). My calf is sensitive, and I have to roll up my pants so the fabric doesn’t touch my skin.
–Sometimes the pain is rocking-back-and-forth, pulling-at-my-hair kind of pain. Sometimes it just randomly hits. Sometimes I know it’s coming. My calf muscle may begin twitching. On certain occasions, I can even see it moving. It makes me think of when I was pregnant, and my husband and I would joyously watch my stomach move when our son would turn or stretch. There is nothing joyous about this though.
–Sometimes my leg feels twisted somehow. As if someone took my muscle and twisted it, the way you wring out a washcloth. And simple things, like bending to pull something off the bottom shelf of the fridge, or bending down to pick up the mail off the floor, or standing on my toes to reach the colander from the shelf in the kitchen, aren’t so simple for me to do.
And I could go on.
I don’t want pity. Don’t feel sorry for me.
Feel compassion and kindness and patience for everyone you encounter. Because you never really know someone else’s pain.
In fact, my earliest memory of myself as a writer goes back to second grade. I had written a story and showed it to my teacher, Mrs. Jones. In all fairness, in my memory, my story wasn’t entirely my own, but was “borrowed” from something I had seen on Sesame Street.
In any event, Mrs. Jones made me a “book” with yellow construction paper for the front and back covers and the “good paper” inside – the white paper with blue lines that was always reserved for our final drafts. She told me to write my stories down in my book.
I don’t know what happened to that book, but I do know that I’ve been writing ever since.
After that, most of my published personal essays were inspired by my teaching career and my interactions with my students. (You can check out a list of my published work here.)
But that was before 2010. For the past ten years, I have written more and more about my life with an autoimmune disease. In fact, I am working on a memoir-in-essays as a mother, wife, and former teacher living with this invisible disability.
While I don’t know if writing is “transforming” my life, I do believe writing provides me with a different opportunity to teach.
This week, I’d like to share a few of the passages that I marked with my pinkish/purplish highlighter.
“… writing that springs from intensely personal motives can be useful to others. For loss is a universal human experience, something we all must learn to deal with.”
“Through reading, our imaginative faculties are nourished, enriched, expanded. This is why, for writers and would-be writers, reading is not a luxury but a necessity.”
“One reason, then, to write as we face these critical junctures in our lives is that illness and disability necessitate that we think differently about ourselves, about everything. We can write a new story for ourselves, to discover who we are now – what we’re feeling and thinking and what we desire. We can learn, too, what our bodies are like now, and we can imagine what will become of us.”
“Writing gives us back the voices we seem to lose when our bodies become ill or disabled. We want to speak for ourselves and our particular experience of illness and disability rather than have someone else speak for us. Writing helps us assert our individuality, our authority, our own particular style. All are seriously compromised by medical treatment and hospitalizations …”
“For illness often confers a wisdom about how to make ordinary life deeply and transcendentally meaningful.”
10 years ago this month, I woke up on a Sunday morning and couldn’t stand. For a few days, my left calf had felt sore and tight – the leftover feeling you get after a muscle cramp.
But on this particular Sunday morning, my calf wasn’t just sore and tight. It was red. Elmo-red. And swollen. And I couldn’t stand up.
I knew something was wrong when the emergency room nurse admitted me as quickly as she did.
My prior emergency room experience was more than five years earlier when I cut the palm of my left hand while trying to cut open an avocado. I remember sitting in the waiting area that evening, my arm raised, my hand wrapped in dishtowels waiting to see a doctor. Waiting for stitches.
This time I was immediately admitted.
I knew that wasn’t a good sign.
But never could I have imagined that my left calf’s “issues” weren’t a temporary problem. Never could I have imagined that Sunday in July was just the beginning.
And never could I have imagined that my life would forever be changed.
“Even though my disease has been a part of my life for several years now, I don’t feel as if I’ve reached a level of total acceptance and understanding. I am more and more convinced that living with a chronic illness is synonymous with living a life full of contradictions.”
And even though my son is twelve now, it still sits on his bookcase. (So does The Cat in the Hat. Some books are timeless classics, after all.)
Alexander is having a tough day. It started when he woke up with gum in his hair. Throughout his day, one bad thing after another keeps happening to poor Alexander. He’s convinced life would be better if he moved to Australia.
His mother reminds him that “some days are like that. Even in Australia.”
Lately, I’ve been borrowing Alexander’s words, telling my family that I’m moving to Australia. Here’s why:
– I woke up before my husband’s alarm, after a fitful night’s sleep. My calf felt tight and it hurt just to lie in bed, just to have my calf resting against the mattress.
– I kept dropping things on the floor as I prepared breakfast. The chocolate chips for my son’s Eggo Waffle. My Cheerios.
– I couldn’t decide what to wear. All my usual jeans felt as if they had transformed into Skinny Jeans overnight. They seemed to grip my leg, like plastic wrap covering a plate of leftovers.
– I went for a neighborhood walk with my son. I felt okay when we left the house. Somewhere, somehow while we were out, the pain came back. It didn’t creep back in either. It barged in. I limped home.
– I went upstairs to get my book, and as I did my knees creaked and groaned. It was painful to listen to and painful to climb the stairs.
– I went to sit out on our patio, to enjoy the sunshine and the colorful sight of my blooming plants, only to discover one of the neighbor’s dogs had pooped on my patio.
– I watered my plants after reading and somehow spilled water onto my feet instead.
– I spent time in the kitchen, boiling water for pasta, hand washing my son’s favorite popcorn bowl, and had to lean against the kitchen counter. My thigh began to hurt. Hurt like someone or something had hit it. Hard.
– I gingerly touched my leg, trying to find out why it felt different. The back of my left knee was puffy, swollen, and tender.
– I dealt with the pain all day long.
– It wasn’t a terrible, horrible, no good, very bad day.
– But it wasn’t a wonderful, fantastic, great, very good day either.
But I think even in Australia my leg would hurt, my socks would get wet if water spilled on them, and I’d be annoyed and disgusted to find dog poop on my patio.
How would you complete this prompt:“When I look in the mirror, I see…”?
My latest publication is a personal essay answering that question. As I wrote in my short biography for Ailment – Chronicles of Narrative Illness, “My personal essay describes all the different “Wendy’s” I see when I look in the mirror. Living with an invisible disability, an autoimmune disease called Undifferentiated Connective Tissue Disease, has changed the way I look at myself and changed the way I see myself.”
“The battles that count aren’t the ones for gold medals.
The struggles within yourself –
the invisible, inevitable battles inside all of us –
that’s where it’s at.”
– Jesse Owens
I had an experience that made me think of this quote.
Many times over the years I’ve been told I don’t look sick.
And I don’t feel sick.
I think of sick as throwing up, coughing, fever. I’m not sick. (Thankfully).
I am uncomfortable. In pain.
And the worst part is when the pain just randomly hits out of nowhere. Sometimes the pain makes sense. I spend 30 minutes pulling weeds and gardening, my legs hurt. My son and I go shopping at Target (such a huge store), and I’m hurting.
But a couple of weeks ago, my husband and I went out to lunch. I was ok. We were walking to our car in the adjoining parking lot, and all of a sudden I clutched my husband’s hand. An intense pain gripped my left thigh. We found a ledge to sit down on. And while I tried to take deep breaths, I quietly cried behind my sunglasses.
I cried because of the pain.
And, I cried because I was out with my husband, celebrating his birthday, and I couldn’t even walk to our car.
The pain subsided enough for me to get up and keep walking. But for the rest of the day my thigh hurt. The kind of lingering hurt you get after you’ve clumsily walked into the corner of a table or something.
Except I hadn’t walked into anything. I had simply walked.