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What It's Like to Be a Chronically Ill Teacher

I’m a teacher. I’m also chronically ill. It’s sometimes hard to reconcile the two, but I’ve been making it work. I’m one of a larger, silent group, often afraid to share our struggles for fear of what the public will think about us once they know “the truth.” You see, teachers are held to a different standard than the general public – heck, most of my students think I sleep in my closet at night and don’t use the bathroom!

While the parents of my students have a more realistic view (and know teachers do secrete bodily functions and maintain their own residences), there is a certain expectation for teachers to maintain a higher level of “moral turpitude” than the average citizen.

Don’t believe me? Imagine your first grade teacher at a bar dancing while holding a beer. Or cursing, or holding a box of tampons, or buying condoms or any of the “normal” things everyone else does – yet seems odd when performed by your favorite elementary school teacher.

Did you shudder? Did it take a minute to get that picture out of your head? Welcome to my world.

I’ve always strived to be a role model for my students in any way I could. I love teaching – it’s more than a job to me, it’s a calling. I love the excitement of the first day of chorus rehearsal when the students get together, a multitude of voices joining together to create a beautiful sound. After over 20 years in the elementary music classroom, I’ve seen my shares of highs and lows. I’ve celebrated student successes from getting roles in plays to alums returning to share the news of acceptance into college. I’ve held students as they wept at their parent’s funerals and discussed strategies to cope with the incarceration of loved ones. Teaching is not for the weak or fainthearted. Teaching is exhausting on a good day, let alone when you are chronically ill.

Seven years ago I was diagnosed with lupus, which added to the fibromyalgia I had already been battling. The diagnosis came right before school started and threw me for a loop.

Along with the diagnosis came the fear – who do I tell?  What do I say? How will my colleagues respond? What would the parents think? How will this impact my job and position in the district? Lupus isn’t a household name illness. Many don’t know what it is and many fear what they do not know. Even though it’s not contagious, would parents worry about their children… even though the children’s germs put me at much greater risk that I ever would them, as to combat the lupus I have to take immunosuppressants placing me at greater risk of infection.

My very well-meaning and beloved grandma did her part for starting to “get the word out” (without meaning to) by putting my name in for a Mi Shebeirach, or prayer for healing at our temple. Now, most weeks, they would read my name and the handful of people who attend the weekly services would hear and no big deal. Well, in this case, it was the High Holidays when everyone comes and we happened to attend temple in the same town where I teach, so everyone who attended heard my name called.

Imagine me, oblivious, walking down the aisles, alums bursting into tears as they saw me, their parents clutching their hands to their chests and I’m waving and smiling trying to figure out what the hell is going on. Before I had a bunch of tweens and teens (and their parents) convinced I was dying that moment, I had to give a little in-service on lupus to some that I was close with and really trusted not to gossip. I explained that I was “OK,” but hadn’t been feeling well, and that “Grandma worries” to those I didn’t know as well. Oy vey!

Fast forward a few months and things swiftly declined, as they often do in the “Land of Lupus.” I was hit with the one to two punch of a transient ischemic attack (mini-stroke) followed by a pulmonary embolism (blood clot in my lung) requiring a stay in the intensive care unit, further hospitalization and a month out of school. My new medicine regimens changed my appearance dramatically (weight gain, moon face, buffalo hump, swollen stomach, hair loss), walking became a challenge some days, my balance wasn’t what it used to be and the teacher who was once dubbed “dinner and a show” in terms of energy was more like “a bag of chips and a Lifetime movie repeat.”

My return to school was terrifying. What do I tell people? What will happened when the parents find out? Will I lose my job?

It turned out that one of the teachers had told his class and at first I was very upset, but I realized, in a way it was better than my absence not being acknowledged at all. I decided that I would tell my colleagues the truth while reassuring my students I was “fine.”

That changed as soon as my first class came in the door and I saw their excited faces. They were just so thrilled I was back and so worried. The next thing I knew I was explaining lupus in the best way I could to these wonderful children:

“I can’t get you sick, but I can get sick very easily since my own immune system is confused. Instead of attacking the germs, it’s attacking the healthy stuff like my joints, skin and lungs, so I have to take medicine to tell my immune system to “knock it off.’”

I explained that if they were sick, they could do me a favor and not sit right in the front. To my delight, the kids were amazing! They asked a few questions:

“Is there a cure?” (Sadly, no.)

“Does it hurt?” (Yup – some days a lot.)

“Will you die?” (I hope not for a really, really long time.)

I reassured them that I was still the same even though I looked a little different.

That first night I didn’t sleep, convinced I would get some phone call from an irate parent for sharing this with their child. Ninety-nine percent of the parents I work with are amazing, but it’s that one percent that can make things really miserable for a teacher. Yet, I was amazed by the outpouring of support and love and prayers I received from the community.

Contrary to my fears, I received nothing but positivity, even praise for coming forward with my struggles. Parents thanked me for being a role model, something I’d heard for years before – but this time I was being praised for being a different kind of role model… one who persevered despite numerous obstacles thrown in her path. I’ve become known as someone who faces everything head on and pushes through, doesn’t “sweat the little stuff” and strives to maintain a positive approach to life’s challenges.

It’s not always easy. Like the day I came back to school after major surgery and they were painting the handicapped parking spots… or the days I’m so tired and in so much pain my hair hurts, but I’m out of sick days, so I drag myself in and give all I can.

I’ve found the kids are amazing wells of compassion and understanding. The first several years after I was diagnosed, our student government voted to raise funds for various lupus charities. Many families have walked with mine every year when we participate in the “Walk With Us to Cure Lupus.” I’ve even had students wear purple, the color of the lupus ribbon, on music class days to show their support.

But often, it’s the little things. Stopping to hold the door for me when I have my cane, picking up the pens I frequently drop, offering to carry materials for me, that mean the most. It’s modulating their behavior so when I say to a fifth grade class, “I’m not feeling the best today, I need your top cooperation,” they don’t take advantage of the situation and modify accordingly. They’ve learned that adults are people too, even teachers and a little compassion goes a long way.

Yet, still I worry. As I type this, I measure every word, for this is probably the toughest piece I’ve written yet.

Will this be the year I can no longer teach? Will this be the year that it’s determined I’m “too disabled” to teach. Will I write something that is too revealing that can be used against me to remove me from my beloved career?

For now, I go into year 23 of teaching with my eyes open and my heart full. Someone recently told me this was my “Jordan year,” referring to Michael Jordan’s jersey number. I was in college in Chicago during Jordan’s legendary time with the Bulls and I remember it well how the city cheered on this amazing athlete. Now, no one who knows me would confuse me with any type of athlete, but I appreciate a good metaphor and will push on to the end.

I can’t wait to see those busses unload and hear the squeals of “Mrs. Newell” as “my kids” unload into the school. I can’t wait to hear all about their summer adventures, see how much they grew over the two months we were apart, dry the tears of the little ones who aren’t so keen to be back and high five my newly minted fifth graders who are now the eldest in the school.

For I am a teacher and I refuse to let lupus or fibromyalgia or anything else hold me back.

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