See Me.

For 6 years (2012-2018), I lived with a chronic pain condition, Trigeminal Neuralgia. It’s a facial pain based in the trigeminal nerve which has multiple branches running through our human faces. For me this manifest as intermittent shooting pain in my left cheek just above my teeth. I described the quality of pain as searing - an ice pick, heated in a campfire, jammed into my cheek. Some days were pain free, and other days sipping a hot latte or shampooing my hair would trigger an episode.

I’ve been a healthy person for most of my life. If I’m honest, I (historically) have low tolerance for people who repeatedly discuss their physical pains. It was a good days/bad days situation; I told almost no one. My spouse, my sisters, and a few close friends knew, but I kept the years of medication trials (mixed success with a range of more-to-less tolerable side-effects) private from even my in-laws and parents. It wasn’t until year 6 when I was considering a brain surgery treatment (microvascular decompression) that I opened up about my diagnosis.

(Note: by neurosurgeon standards this is a relatively straightforward surgery with a high rate of success. For me, who had not been in the hospital since delivering my second child, any surgery that would cut through the dura mater of my brain seemed pretty intense. And 85% success? Well…that’s B level work).

Why was I so private? I’m not entirely sure. It was probably some combination of not wanting others to worry and not wanting to be DEFINED by this condition. Ironically, a turning point in my journey was meeting a former classmate at my husband’s high school reunion who stated he “got his life back” after a successful surgery (the same type I was considering). His honest discussion of his journey gave me permission to acknowledge how difficult it was to live with chronic pain.

The details of the 2018 surgery at Mayo and recovery are a blur. Just suffice it to say, the procedure was successful; my symptoms were gone the next day. I realize that outcome is not the story for many people living with pain.  I’m now approaching year 6 post surgery and feel an enormous relief and gratitude that I am past the highest likelihood for reoccurrence.

For me, that season of living with Trigeminal Neuralgia is a distant intense dream. You may be in a more active season of pain. If so I wish you grace and strength on the journey. In recent years, I’ve shifted my internal narratives to allow more space for ALL dimensions of my human experience. Yes, I prefer joyful experiences. Yes, it’s still challenging for me to acknowledge and lean into discomfort, psychological or physical. But a multidimensional human journey is honest, complex, and real.

This week, I encountered the term “bearing witness” to each other’s journeys. In community, we listen and observe to understand and bring compassion during the times of joy and pain. Perhaps this is where the healing begins.

Picture attribution:

By BruceBlaus - Own work, CC BY-SA 4.0, https://commons.wikimedia.org/w/index.php?curid=44968538

For information on Trigeminal Neuralgia, see The Facial Pain Association at facialpain.org.