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.
“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.
Sick as in 2 different visits to the pediatrician’s office for same-day appointments.
Sick as in 3 absences from school.
Thankfully, it wasn’t anything more than a bad viral infection.
I am very relieved to say that he is feeling better.
But in the midst of all that, of sitting on the bed together, of reading on the couch together, Ryan asked, “Why me?”
I tried to give him the scientific answer. He must have touched a doorknob, a chair, a stack of papers at school that had a germ on it, and the germ was passed on to him when he touched his face, scratched his nose, wiped his mouth.
He wanted me to ask the pediatrician, and he got the same answer.
But back at home, as I smoothed the hair away from his forehead, he asked me again, “Why me?”
Why Ryan, indeed.
There is no answer for that.
A boy who, just this week, earned a very high report card. A boy who, during parent conferences, a teacher told us, “You know, I wish I had 30 more just like him.”
A boy who has already been described as “having a good heart,” by a coordinator at his middle school. An adult who has only known Ryan since August, but has already observed his good, kind ways.
It’s a dangerous question. Because there is no answer.
In the beginning, I used to ask the same question about my autoimmune disease. “Why me?”
For a while, I thought I was being punished.
Then I thought I was being tested.
Now, I’m wiser (hopefully), and I know there is no point in asking “Why me?”
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.
It temporarily stopped me, because I don’t consider myself a particularly brave person.
I have lived my entire life within the same ZIP code.
My first passport expired before I earned a stamp in it. And since then, I’ve had one international trip.
But my neighbor spoke of my bravery in a different context.
We were speaking, in very general terms, of my autoimmune disease.
We were speaking, in very general terms, about my pain level increasing as the day goes on.
Yet, she sees me outside on a regular basis, sweeping my front steps and my back patio. Watering my plants. Going for a walk with my son.
I don’t regard those activities as “brave.” They are merely the activities that make up a part of my days.
Am I brave? I don’t know.
So I did what I usually do when I’m not sure about something, when I need more information. I looked it up. I used my computer’s dictionary to read the definition of “brave” – “ready to face and endure danger or pain; showing courage.”
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.