What triggers EM…and what triggers you?

There are many things that can trigger the fire of an EM flare… heat, increased body temperature, bed covers, a simple pair of socks, spicy food, a glass of wine. We know it. We live it. It’s brutal.

It all comes down to a slight increase in temperature above what our personal misbehaving thermostat can take. We flare more often in the evening because this is when our body temp naturally rises a bit. Anything that kicks up body temperature- a warm comforter, a pair of shoes, your softest socks, a short shower, spicy food with a bite- can all trigger an EM flare. Alcohol can equal “feet on fire” due to the vasodilation it induces. Vasodilation is just a fancy way to say the blood vessels widen or get larger. Anytime vasodilation occurs, whether via a workout or a wind-down cocktail, it can trigger a flare.

There’s lots we can do to take our life back from flares. You can read more about my own personal EM health reclamation here, but today I want to talk about another less commonly discussed part of EM.

There are things that trigger EM- aka heat- and then there are the emotions EM inevitably triggers in those it afflicts. I’d like to step into that landmine of feelings EM brings up.

 Oh, the rage of seeing runners pass. I’ve heard this uttered a million times from the mouths of those I work with. And how could we not feel rage for the many losses? Losses heaped upon losses.

“Forget running”, people say. “I could live without running- but to take a walk without pain- that would be enough.”

They say, “Those that walk the earth without pain, they know nothing of the gift they’ve been given. They are among the lucky ones. Those that do not know the pain of a once large life now measured in single, solitary steps.” 

To ski.

To golf.

To dance.

To chase after my toddler.

To walk the block on a beautiful day with my dad at my side.  

These are the simple pleas I hear muttered every week.

My father was with me on a spring day in Minnesota. I had made it a few blocks from my home and into the park. “Look!”, Dad said, “A marathon is going on across the bridge. Maybe they will come our way!” My heartbeat quickened. Once a marathon runner, I now struggled to make a grocery run or stand to make dinner. My father still saw me as a runner despite my having been crippled by EM. In the moment, I had two simultaneous prayers, “Please god do not let them run past!” and “Could the earth please swallow me whole?”

It was hard on a daily basis to see people jog past my windows as I sat burning alive on the couch. It was a challenge not to feel a mix of rage and hatred while driving when a person strode past. Peppy runners were hard to handle individually. I felt that if they ran past me- all these marathoners collectively- that somehow, I wouldn’t survive it. To stand amidst that crowd, I would be forced to face my loss.

I didn’t say this aloud. I hid my sorrow, my anger, my rage. I swallowed it. I was ashamed of it. Heaped atop my many losses was guilt. I wouldn’t wish this disease on anyone. I was a kind and empathetic person, yet I couldn’t deny the resentment I felt at those that lived in the land of the running. When my husband would return sweaty from a run and complain that it was too warm to get a workout in outside, I would think the following words, “Die, die, die”. I would walk away without muttering a word and the guilt would follow.

But what was it that I wanted to kill? What did the jealousy speak to? This seemed more important than the dark thoughts.

Underneath the feelings of anger and jealousy lurked a fear that things would never get better. That this was my new normal. That life had dealt me less than a stellar hand and there wasn’t a damn thing I could do about it.

Underneath the feelings of anger and jealousy hid the grief of all the stolen things. Not just the loss of running, but of so many unnamed and invisible dignities. I felt like a pencil slowly shaved into a small shard of what it used to be. A forgotten tiny remanent of a brown crayon now of little use to anyone.

One can begin to feel overshadowed, small, and defective standing next to the infinite new and shiny Crayolas moving around in expensive activewear. And yet, if we follow our initial feelings of jealousy and anger into more vulnerable feelings like fear or sadness, we may discover what we are truly longing for. 

To feel healthy again in our body.

To feel connected to others.

To feel present- not distracted by pain.

To feel understood.

To feel unafraid.

To feel worthwhile and worthy.

Despite our red feet, we have so much to offer the world. Follow your feelings. They can forever and always be trusted. What triggers you is an invitation into better knowing yourself and your deeper desires.

May I leave you with a blessing by dear Kate Bowler entitled “A Blessing for You Who Lost Too Much Too Quickly”-

“Blessed are you sitting among the shards of what could have been. It’s broken now, that dream you loved, and it spilled out all over the ground.

Blessed are you letting your eyes look and remember all the hope you once had. All the love, all the beauty, all the future selves. You could have been.

Blessed are you telling your tears they can flow, telling your anger, it can speak. Letting this loss speak all its terrible truth to your soul.

Blessed are you, when mourning is the holy work of the moment, for it speaks of what is real.

Blessed are we who mourn saying let me stay here in grief’s cold winter for as long as it takes.

That morning might be, to our hearts, the gentlest springtime. Let the thaw come slowly as we learn to live here in what is possible today.”

Throw guilt to the wayside and follow what triggers you. Springtime is around the corner, but there is no use in denying the winter… your own personal very specific hellish EM winter. If you are stuck in a blizzard, you might as well use it for all it’s worth.

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