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Photo by Paweł Czerwiński on Unsplash

Yesterday I had an idea for an essay I wanted to write. Although it was autobiographical, some of the events involved other people. I contacted them to get their permission, and I was excited to put my thoughts into words.

Then I woke up with severe burning in my feet and toes. This is not unusual because I have a rare neurovascular disorder. About 1 in 100,000 people suffer from Erythromelalgia. This illness causes redness, swelling, tingling, and pain in my toes, feet, legs, and ears. Recently it has begun showing up in my hands.

The pain never leaves, but sometimes it flares. Activity, heat, and weather changes can trigger periods of hyper-intense pain. Sometimes, though, flares happen without any perceptible cause.

Standing for extended periods is nearly impossible, and I can typically sit up for short stints. I can’t shower every day. Occasionally, though, I can get out of the house. Last week I made it to church, but I was unable to go out with my wife on out anniversary a few days later.

I have seen neurologists, rhumetaolgists, dermatologists, phlebologists, and a palliative specialist. Each of these physicians have prescribed countless tests and attempted more treatments that I can remember including medications, chiropractic, medicinal marijuana, and even a trial of a spinal cord stimulator.

My therapist provides me with strategies for dealing with the pain and retiring from my teaching position due to my disability. I visit a pain specialist bi-monthly, and it’s not an exaggeration that this is what keeps me alive.

Nothing completely alleviates the chronic pain (that’s why it’s chronic), but my daily combination of medications and mindfulness has gotten me to a point of being able to function.

And by “function” I mean spend most of my days on the couch with my legs elevated.

Some days I can write a little. That’s what I had hoped to do today, but the relentless burning and aching in my left leg and foot makes it nearly impossible to think straight.

Right now, this is just an outpouring of words. I don’t know if it makes sense, but I wanted to say something that might refocus my attention for a few minutes.

A little over a year ago I began a personal Twitter account to connect with people who have similar conditions and to tweet out my excruciating frustrations. I figured throwing it out into the twitterverse would help me not burden my family too much. I tweeted something about this flare-up, and my compassionate Twitter friends have offered their support. Their words of reassurance and encouragement mean more to me that I can adequately say.

Saying that I am nearly bedridden is a difficult reality to accept. It’s one of those things — like getting struck by lightning or winning the lottery — that happens to other people. But this time I am “other people.”

This is my life. This is who I have become. On my better days, I accept my new self. But on days like this — days when all of the medicine and mindfulness fail — the pain makes me wish I could be my old self encouraging, helping, and praying for “other people.”

From here on out, I stand — lay — in solidarity with all of those “other people” who rely on and appreciate your thoughtfulness and consideration.

A former elementary educator with a physical disability. @disabledsaints

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