“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.
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.
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.
More and more, I find myself in a conscious pursuit of happiness. And calm. And simple moments of joy.
Like most people, I find it too easy to become overwhelmed and frightened by the news.
When I was a teacher, my students had “independent time.” During that time they completed “must do’s,” and when those were done, they could choose something from the “may do” list.
I know my days should not only be filled with “must do’s” such as homeschooling my sixth grade son, cleaning the house, paying the bills, and cooking the meals.
I know that it is just as important to incorporate “may do’s” into my day – things that fill me with happiness, things I do for the simple pleasure it brings me.
And I’m lucky. There are plenty of things that bring me joy at home.
I read. Books and magazines. Non-fiction and fiction.
I tend to my garden – both the back patio and front porch. I sweep the jacaranda flowers, pull weeds, and water my plants. My son and I go outside every day for a neighborhood walk and sometimes a bike ride.
But, these things that take me outside of the house and bring me joy also bring me additional pain.
Since this pandemic shutdown, my pain has been consistently worse. Sometimes it’s immediate. From the moment I wake up in the morning, often after a fitful night’s sleep, my legs feel heavy. Each step makes me feel like I have invisible weights strapped around my lower legs. Sometimes the pain gradually increases as the day goes on, until one trip back up the stairs leaves my knees creaking loudly and me gripping the banister, taking each step very slowly, very cautiously. Sometimes, I may be reading on my patio, swatting away a fly, and my jeans suddenly feel very tight and restrictive around my left calf. And all I can think of is David Schwimmer’s character, Ross, struggling with his leather pants in a Friends episode. Except when it happened to him, it was funny. When it happens to me, it means it’s time for me to go inside and roll up my pants so my calf doesn’t feel the fabric against it.
And sometimes, my pain wasn’t too bad until I squatted down to pull weeds or on the way back home after a mile-long walk with my son.
Yet, I continue doing these things. When so many other simple pleasures have been taken – browsing my local bookstore, enjoying French Crepes at the Farmers Market – I continue to do these things that make me happy in the name of “stubborn gladness.”
(In case you missed it, click here to read an earlier blog post, “Announcing My Motto For Life” which explains the term “stubborn gladness.”)
And you, dear readers? How do you find joy and moments of pleasure during these challenging times? Feel free to share in the comments section.
“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.
“Above all, be the heroine of your life, not the victim.”
– Nora Ephron
I am trying very hard to be the heroine of my life.
In the beginning of this medical odyssey (which began almost ten years ago), no one knew what was going on inside my body. Which meant no one knew how to help.
I did everything every doctor suggested. Went to every appointment. Met with every specialist I was sent to. Did every test doctors recommended.
For my readers who don’t know, I first became ill in July 2010. I didn’t receive my diagnosis until November 2011. During that time, I met with a neurologist, geneticist, rheumatologist, vascular surgeon, and ophthalmologist (did you know certain cancers reveal themselves through your eyes?).
Back then, I automatically said yes to everything. My body felt out of my control. I was scared. My son wastwo years old when I became sick. I needed answers, and I needed help.
Now, almost ten years later, I know I’m dealing with a chronic illness, and nothing fatal (thank goodness), and I’m not so quick to readily agree to a doctor’s “recommendation.” I probe for further information. I email my doctor and ask for clarification on something he said during my appointment. And I ask a lot of questions.
Why are you recommending this procedure?
What are you looking for?
What are the side-effects?
I didn’t “do” anything to get sick. And there’s really nothing I can do to make it go completely away.
In that sense, I am a victim.
But, I can exercise some control over how I choose to live with my autoimmune disease. Which means asking questions, taking my time to make a decision about a procedure, and gathering as much information as I can.
And apparently, from a medical standpoint, I’m still weird.
Here’s the thing. I’ve said it before, I’ve written it before, and I’ll write it again – I’m okay with being weird. I know a lot of people think it’s weird I like to eat leftover Thanksgiving turkey cold and dipped in ketchup. Maybe it’s weird that I always have to sleep with blankets covering me. Some might find the nine rings I wear to be weird.
Weird can be good. Weird can be unique. And special. And celebrated. It tells the world I don’t need to be like everyone else.
Except – when it comes to medicine.
I’m going through a rough time right now. Actually, for the last several months. My rheumatologist referred me to a neurologist in his office. I’ve had two different (unpleasant) tests/procedures.
One test revealed “muscles abnormalities.” Abnormalities – just a fancy word for weird.
The other test supported the findings of the first test.
But when my rheumatologist walked into the exam room the other day for my follow-up, he told me he had met with the neurologist, reviewed the findings, and in his words, “She says you’re weird.”
“I’ve heard that before,” I replied.
But inside I didn’t say that. In my imagination, a whole other scenario played out. I got off the exam table and started screaming at everyone.
“Don’t call me weird,” I hollered, enunciating each word.
“Tell me you don’t know what to do. Tell me you don’t know how to help me. But do not f – – -ing call me weird. It’s not me that’s weird. It’s this disease.”
I had images of me standing outside on Wilshire Boulevard, using a baseball bat to whack the street signs.
The police officers would come. I would admit all my wrongdoing. Take full responsibility. And tell the officers that I was just overcome with emotion. I had been called weird once too many.
Because when my doctor told me I was weird, I knew we didn’t have any more answers. I knew I wasn’t going home with a new treatment plan.
I live with pain. Each and every day.
Pain isn’t weird. Pain is exhausting. Pain is depressing. Pain is want-to-pull-the-hair-out-of-my-head upsetting. But it’s not weird.
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.”
“How long has it been like this? When did it start?”
My physical therapist asked me that at last week’s session as she was massaging my left leg.
“Nine years ago,” I said.
She made a “tsk, tsk” sort-of-sound.
“It feels like you’ve got 10 years’ worth of tightness in here,” she said.
She rubbed some more. “How do you walk around like that?”
“What other choice do I have?” I replied.
For the past three weeks, I’ve been going to physical therapy. Many years ago, a doctor had referred me to physical therapy. And the physical therapist discharged me after just a few visits, telling me that PT wouldn’t help me.
This time, my rheumatologist referred me because of “new” pain I described to him. After an exam, he believed I had injured my IT band, and now, because we had a specific injury to treat, physical therapy might help.
My physical therapist seems to wholeheartedly believe she can help me, but I’m skeptical.
At my first appointment, my physical therapist told me I have a lack of flexibility and mobility in my left leg.
I knew that already.
At the same time, going to PT has also given me a certain sense of validation. Someone else recognized and acknowledged my pain; someone else was able to “see” what is largely unseen.
I came home from my first appointment with my knees taped up. Later that afternoon, my eleven-year-old son told me it looked cooler on basketball players than it did on me.
I left my third appointment with more pain than I had when I began the appointment.
Meanwhile, I’ll keep with it. I’ll continue going, partly because my insurance covers most of it, but also because I don’t want to entirely give up. At least not this soon.
Though at this point in my life, I wonder if anything can really help me.
Plus, physical therapy is just more work. With the therapist, I’m working my muscles in different, and sometimes uncomfortable, ways.
At home, I have my “homework” to do – a series of exercises and stretches I do daily.
And there are days, when I’m just tired of it all. Tired of the work involved – of staying on top of prescription refills, appointments, and medical insurance.