Losing My Vocation

Several months ago, I started short-term disability due to chronic nerve pain arising from erythromelalgia (EM).

Red door on a blurred image.

I teach second grade. Or at least I did. Maybe, I will again. I don’t know.

Several months ago, I started short-term disability due to chronic nerve pain arising from erythromelalgia (EM).

Erythromelalgia is a rare disease that causes intense burning and redness in my toes, feet, and legs. Also known as “Man on Fire Syndrome,” EM prevents me from walking, standing, and sitting for more than a few minutes at a time. I can’t even wear socks because anything touching my feet causes agony.

Walking triggers flaming discomfort, and sitting with my legs dangling produces a gripping sensation. EM often ignites unpredictable flares. When the pain spikes, I have no choice but to wait until it passes. Some flares have caused me to nearly pass out, and others have sent me to the ER.

Since going on medical leave, I spend most of my time on the couch with my legs elevated. The pain and meds used to alleviate it generate a brain fog that shortens my attention span, so I can’t read more than a page or even a paragraph at a time.

More distressingly, my disability has taken from me the vocation that I love.

I believe teaching is a noble profession. Teachers instruct children how to read, write and understand mathematical principles. We model how to solve interpersonal conflicts, direct our emotions, and persist through difficult situations. We help parents understand the academic, social, and developmental progress of their children. Teachers contribute to the lives of children and the health of society. I’m honored and humbled to belong to this profession. Teachers do good work.

More distressingly, my disability has taken from me the vocation that I love.

Teaching is not for the faint of body, mind, or heart. This is especially true for teaching seven and eight year-olds.

Teaching second grade is definitely not for the faint of heart. It involves hours of walking each day — around the classroom, in the hallways, on the playground, up the stairs, down the stairs, and around the lunchroom. Then, there’s sitting — at the reading table, near the computer table, alongside students’ desks, in the rocking chair to read.

Plus, the children are little, which means squatting down to help them solve math problems, listening to how their BFF won’t play with them at recess, and putting a Band-Aid on a scraped knee. Second grade teachers sit on the floor frequently — to look over students’ journals, play math games, and perform science experiments. Also, I’m reading all day long, not only during reading instruction but during math, science, social studies and writing.

Teaching second grade is definitely not for the faint of heart.

Second grade leaves little time to rest. Before going on medical leave, I walked the students through the hallways so they could spend fifty minutes each day in PE, music, art, library, or Chinese. Afterwards, I attended meetings with administrators, colleagues, or parents. Sometimes I spent that time in the workroom making photocopies or cutting paper. When I could make it back to my classroom, I assessed student work, moved desks, cleaned up, or prepared for the rest of the day.

After school, I corrected the students’ work, so I could plan instruction more suitably for the next day. This involved reading paragraphs, correcting math work, entering grades online, sending emails to parents, and reading emails from parents, colleagues, and administrators.

All of this takes intense training, devotion to the profession, and dedication to people, both small and large.

I loved being a teacher, and I miss everything about it.

I miss the look in a child’s eyes when she knows that she read a passage flawlessly for the first time in her life. I long for the enormous stack of paragraphs to read and correct. There are so many math problems to assess, but none of them needs me anymore. Colleagues collaborate to find a way to help a struggling student without my input. Parents no longer receive my emails letting them know that their child overcame a lingering academic or social challenge. The incessant chatter and laughter of children fills a school beyond the scope my hearing. High-fives, fist bumps, and hugs happen without me.

I loved being a teacher, and I miss everything about it.

Since I went on medical leave, I am no longer a teacher. I’m a former teacher who hopes to teach again but now lays on the couch all day and scrolls through Twitter and watches ESPN or CNN checking the clock until it’s time to take my pain meds while waiting for my next doctor appointment. That’s who I’ve become.

A couple nights, ago I dreamt that I was in my school’s conference room. Several of my colleagues sat around the table as I circumambulated it looking for my name tag. After five times around, my principal spoke up, “Kevin, there’s no place for you. You’re not here anymore.”

I woke up in tears. And in pain.

I hope I’ll be back in the classroom next August, but I’m not sure if EM will let me.

People tell me not to give up, but I don’t know what that means. I think they’re trying to encourage me. Don’t quit looking for a cure. Don’t stop getting medical treatment. Don’t end your life. I also think they’re communicating how much they care for me. They want the best for me and hope that I’ll be teaching again. It’s hard to know what to say to someone who is suffering.

And I haven’t given up. I’ve sought help from neurologists, dermatologists, pain doctors, and palliative specialists. I underwent an ineffective test for a spinal cord stimulator. Living in Colorado, I have tried CBD and medical cannabis with no success. People have given me spiritual advice ranging from prayer to anointing to A Course in Miracles.

It’s hard to know what to say to someone who is suffering.

While I was on a waiting list for a specialist at Mayo Clinic, a person in an online erythromelalgia support group told me that she went there too. “They know all about EM but still have little answers.” EM is classified as a rare disease by the National Organization for Rare Disorders (NORD). Because it has neurological, genetic, and vascular symptoms, EM doesn’t fit neatly into any specialty. Erythromelalgia shows up in about 1 in 100,000 people, and this means there’s not a huge profit incentive to do research and find a cure.

I ignored her advice and took the thousand mile trip to Minnesota to be treated by one of the world’s leading EM physicians. After examinations and tests, he has given me a care plan.

All of this leaves me hopeful but pessimistic. No one has a cure for my illness, but maybe my new meds will lower my pain levels enough to allow me the opportunity to lead a literacy group, read a silly story, or hear a roomful of children chuckle when I tell them I have duty. “Ha ha ha! Mr. Beck has duty.”

Becoming disabled has thrown a wrench into my sense of self. I never imagined I’d become disabled, especially to the point of not working. I know that my life is more than my job, but teaching is more than a job for me. It’s where I find joy, creativity, and meaning. The classroom is where I befriend a variety of people, persevere through challenges and discover that not all hardships can be resolved. So, what am I now? A teacher? A former teacher? A disabled teacher? Will I ever be a teacher again? I just don’t know.

I’ve started saying to myself what I’ve told my students facing a difficult test: “Do your best. It’s OK if you don’t know. You are more than how you perform on any one test.”

Maybe, I should listen to my own instruction. Maybe, I should become a learner, not just a teacher. Maybe, I should do my best. And maybe just maybe, I’ll get to be a teacher again.

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