Our family’s world changed on Friday, the 13th. March 13th, when the Los Angeles Unified School District (LAUSD) announced that all schools would close for two weeks due to the spread of the COVID-19.
My son was supposed to return to school on Monday, March 30th.
Since then, LAUSD has amended its original plan and called for all schools to remain closed until May 1st. But even that date is tentative. Rumors are swirling that our children will not return to a classroom for the remainder of this school year.
In the meanwhile, teachers scramble to put together lesson plans and instructional programs that children can access online. Which means parents are now being called upon to serve in the roles previously held by the schoolteacher – taskmaster, cheerleader, supervisor, tutor, coach.
Now, many parents are taking to social media, claiming “that being with their child day-after-day helping them with assignments is giving them a taste of what it’s like to be a teacher.
“And to those parents, I want to say, ‘No it’s not.’ “
Those words begin a personal essay I wroteand that was published last week at Motherwell Magazine. You can click here to read the essay in its entirety.
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.”
“Unprecedented” is the big word in our house. It perfectly describes what our city, our state, our country, our world is going through.
As I tell my almost-twelve-year-old son, no one really knows. Everyone is making it up as we go. Trying to figure out what needs to be done to keep people healthy and safe.
I recently read Michael J. Fox’s slim memoir A Funny Thing Happened On the Way to the Future…
They say that sometimes books come into your lives when you most need them. Well, there was one part I most definitely needed to read. It helped me, and I share it with you this week in hopes that it will also help you during these uncertain times.
“Don’t spend a lot of time imagining the worst-case scenario. It rarely goes down as you imagine it will, and if by some fluke it does, you will have lived it twice. When things go bad, don’t run, don’t hide. Stick it out, and be scrupulous in facing every part of your fear. Try to be still. It will take time, but you’ll find that even the gravest problems are finite — and that your choices are infinite.”
And in the midst of all this uncertainty, all this toilet-paper-buying, all this hand-washing, I’m trying to remain calm and reassuring, both for my son and myself.
No one prepares you for difficult conversations with kids.
I remember when I was still teaching. Having to talk to my fourth graders the day after the Sandy Hook tragedy. They were scared. They wanted reassurances and promises. And I could only promise them so much. I promised them that my number one job each day is to keep them healthy and safe. And I promised them that everyone at our elementary school felt the same way.
Now I’m having to talk to my almost-twelve-year-old son about a virus I have difficulty spelling.
For my son, the coronavirus became more real when the NBA cancelled games and suspended the season. And on the same night we got that information, we found out one of our favorite actors, Tom Hanks, had contracted the illness.
Though Los Angeles schools are now shut-down for at least two weeks, our family is managing. We’re lucky. I write from home, and thankfully, we’re not reliant on the meals provided by my son’s school. We’ll get through this, because really, what other choice is there.
But what do I tell my son? What can I promise him during these unprecedented times?
The same thing I told my students. My number one job is to keep him healthy and safe.
Wishing you all health and safety and hope you surround yourselves with things that make you feel good and cozy. For us, it’s hot chocolate, good books, microwave popcorn, and the reassurance that we have plenty of toilet paper stashed away.
The latest book on my “just read” list is Keah Brown’s The Pretty One.
I first saw the book at Target and was immediately intrigued by the author’s smile and subtitle – “On Life, Pop Culture, Disability, and Other Reasons To Fall In Love With Me.”
Keah Brown and I are different.
She is in her twenties; I am in my forties.
She is black; I am white.
Her disability is visible; mine is invisible.
However, her book proves a very common theme – the more specific you can get in your writing, the more you’ll find it relates to so many different people. You don’t have to be like Keah Brown to read this book. In fact, maybe it’s better if you’re not. Because then you’re forced to go along with Ms. Brown for this ride; to get a sense of what it is like when most of the movies you enjoy watching don’t feature a character that looks like you. (Although, like Ms. Brown and her sister, many of my friends did refer to my younger sister as the “pretty one.”)
Here are a few takeaways I’d like to share with you this week:
“The loss of control is where the true manifestation of my anxiety begins: the fact that you’re put under and you have no idea what is being done to your body, but you lead with the hope that it is the right thing, as strangers cut into your body in an effort to make it better. The reality is that I frequently cut myself open in the figurative sense when I share bits of myself with readers and audiences, but the idea of being cut open in real life will never not worry me despite the many experiences I have had.”
“The pain is still there when it wants to be. The pain is one of the factors of disability that I cannot control. All I can do is try my best to take back the narrative about what living with disabilities is like.”
“I like that my journey has not been easy, because then I would not have my stories to tell. Getting to that place of thought was hard, but so much of my life makes sense in these terms.”
“Imagine if we gave ourselves the same sort of love, attention, and understanding we give the people we love. If we allowed our vulnerability to fuel us to be better people, to say and do more, to feel in and navigate a world that champions tears as much as it does strength, to see tears and crying as signs of strength, even.”
“I have always believed it is imperative that we learn from the experiences and histories of other people to better understand each other and ourselves.”
“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.
Saturday, February 29th is Rare Disease Day. “The main objective of Rare Disease Day is to raise awareness among the general public and decision-makers about rare diseases and their impact on patients’ lives.”
I became ill in July 2010 but wasn’t diagnosed with Undifferentiated Connective Tissue Disease until November 2011. When my rheumatologist finally put a name to my symptoms, he told me UCTD is rare and that if I wanted to walk around and call it “the Kennar,” I could.
At the time, I joked with my doctor, telling him I had always “dared to be different,” so why should this be any different.
But since that morning, I’ve changed my mind.
I don’t want a rare condition most people have never heard of. I’d much rather live with a more common, even ordinary, chronic medical condition.
A disease doctors understand and can easily treat.
Maybe even a disease with its own awareness month or magnetic ribbon I can attach to my car.
“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.
There were so many parts of Mary Laura Philpott’s collection of essays, I Miss You When I Blink, that felt like she wasn’t writing about her life, but mine.
That’s part of what makes a good book. You get lost in the story. Whether it’s fiction or non-fiction. Whether it’s based in the past or the present, or even the future.
And I got lost in this story. I saw myself on page after page. At times it was unsettling. At times it was reassuring.
“When you internalize what you believe to be someone else’s opinion of you, it becomes your opinion of you.”
“If you’re twenty-three and twenty-one and you tell me you’ve just gotten engaged, I will tell you that you’re insane and too young, because when I look at twenty-one- and twenty-three-year-olds now, they look like babies. But at the time, when I was twenty-one, I could not foresee any reason not to marry him. I pictured the timeline of my life ahead of me – inasmuch as a twenty-one-year-old can look at her future life, which is to say in hazy, imaginary terms – and saw no circumstance in which I’d want not to be married to him.”
(Side note to my readers – when my husband and I were married, he had just turned 23, I was a few weeks shy of turning 23.)
“I felt like vapor in need of a shape to contain me. Who was I if I wasn’t that person busy with a hundred tasks and a dozen phone calls to return every day? Who was I if no one needed me to make their lunch anymore? And what good was I – what quantifiable measurement could be there of my worth – without these value systems to calculate it? These questions didn’t excite me. They terrified me.”
“That’s one of the strange things about life: Even when we know how much worse it could be, everyday pains are still pains.”
“But one person’s more-sad doesn’t cancel out another person’s less-sad. The fact that an earthquake took out a whole city block doesn’t make it hurt less when you trip and snap your ankle.”
“You wish you could take a break from carrying everything. It’s all so heavy. You are so fucking tired.”
“What I can say is that my early forties are ticking by at an alarming rate. The idea of making my days count makes me feel like I’m not wasting them.”
“Children hold you accountable on their own. They keep a tally, and they remind you. There’s no dodging these little accountability officers. They report for duty – and report on my duties – every day.”
“But maybe the trick isn’t sticking everything out. The trick is quitting the right thing at the right time. The trick is understanding that saying, ‘No, thank you’ to something you’re expected to accept isn’t failure. It’s a whole other level of success.”