Drew Eckhart

My feet are on fire from the inside. Electric fire. A fire that can never be fully extinguished. No matter what I fight it with, there’s always an ember left smoldering, fully capable of building itself back up into a raging inferno.

My name is Drew Eckhart, and I have Erythromelalgia (EM). I’ve had it since birth.

My parents say they first noticed something was wrong when I was just a few months old, during the long drive home from Thanksgiving at my grandparents’ house. I cried and screamed the entire way. My feet, hands, and face were beet red. Doctors confidently assured them it was nothing more than a bad case of hand, foot, and mouth disease (HFM). It was a plausible diagnosis at first, but HFM doesn’t last for years. It goes away. My condition didn’t go away.

I was carted from doctor to doctor, specialist to specialist, as my mother searched for answers. The decent ones shrugged their shoulders. Most told my parents the only thing I needed was a good spanking. One therapist squeezed my blazing foot and confidently—almost kindly—assured me that it didn’t hurt.

That is the worst part about being a child with an obscure chronic pain disorder: no one believes you. I felt crazy, unsupported, and hopelessly different from the other kids. The one thing I was most certain of in the world was impossible to prove. I could barely articulate it beyond, “My feet hurt.”

When I started school, the principal and physical therapist were dogmatically convinced I was making the whole thing up—that my woke, hippie parents had spared the rod and indulged this charade for years. They saw it as their ordained quest to straighten me out, to make me “normal.”

They didn’t want to correct delusions of pain. They denied my pain existed at all. What they really wanted was to take away my most essential method of pain relief: taking my shoes off.

As long as I’ve been able to connect cause and effect, I’ve known that wearing shoes makes my feet hurt more. If I’m already having a flare, shoes make it worse. If I’m not having a flare, wearing shoes for ten minutes or more will trigger one. This is a universal law of my body.

In kindergarten, “shoe breaks” were designed as a compromise by the school administration. I was allowed to remove my shoes, but only for five minutes, three times a day. These shoe breaks were tracked using an orange piece of laminated construction paper with three evenly spaced Velcro squares. Attached to each square was a plastic button.

Whenever I needed to take my shoes off, I had to rip off a button.

I remember the resistance. I remember the sound—sharp and tactile, a ripping noise that felt obscene in its finality.

Green. Yellow. Red.

Once the red button skreccccchhhhed free, my shoes had to stay on for the rest of the day. My pain, of course, didn’t get the memo that its allotted time had expired. Tears turned into wails, wails into screams, and I was rushed out of the classroom so I wouldn’t disrupt storytime.

Yanked out of the classroom, into a single-occupancy, unisex bathroom across the hall, a demonly woman—garishly tall, with a shrunken head and copper-wire hair—loomed over me and pinned my legs down. That was her one and only job: to use any means necessary to prevent me from removing my shoes outside of the designated breaks.

These torture sessions happened every day for months. Sometimes I was even held after the dismissal bell rang. All of this—because I took my shoes off.

After my diagnosis, the administration eased up slightly. But it still felt like they never truly believed I was in pain.

During the Great Recession, my family moved across the country from Detroit to Oklahoma City. The new school district accepted medical science and was, thankfully, not fond of child torture. From fifth grade on, aside from using a wheelchair, my school experience was largely normal. Most importantly, I was allowed to take my shoes off!

I still received the occasional look of disgust or annoyed comment, but I could handle that —easily!

I wasn’t cured. I still had Erythromelalgia. But I now had the freedom to manage my pain on my own terms. My teachers and principals believed my pain was real, and because of that, my peers did too.

Even in a supportive environment, my life isn’t easy. The pain lives with me every day. I was fortunate to work with an excellent pediatric neurologist who guided me through the long, arduous process of trial and error, experimenting with every medication or treatment that might, maybe, possibly have an off-label use for treating Erythromelalgia.

Neurontin. Gabapentin. Topamax. Tegretol. TENS units. Nerve blocks. Some helped more than others, but eventually we landed on a one-two punch of clonidine and mexiletine. I’ve been taking them since 2011.

In addition to medication and avoiding shoes, I manage my symptoms by staying cool, elevating my feet, and using distraction to dull the edges of the pain.

Within the past year, I’ve found another form of relief: writing. Putting my experience into words has given me a way to process what I’ve lived through. This essay is part of a larger project—one I’m expanding into a book.

I want to tell the world about Erythromelalgia. I want to bring it out of the shadows—and, one day, help make room for a breakthrough that extinguishes the fire for good.