In the Trenches

*TRIGGER WARNING* Facial Neuropathy Photos

I waited.

And waited.

I wanted to be the Before & After story. I wanted to show the entire recovery, not the struggle. I didn’t want to upset my family or friends. I didn’t want Phil and Logan to relive that morning, though it haunted me for months. Every Saturday morning after the implosion of my nervous system and possible TIA, I’d sob uncontrollably. Just walking by my office sent terror through my veins.

At the Stroke Center, the neurologist said my facial droop was severe dysfunction. From that time on, my facial weakness varied, and it occurred spontaneously until we began to see a pattern. Heat is bad. I had to document each one for my doctors. Somedays, it’d happen 20 times, I didn’t want to go out in public, and I certainly didn’t want to see friends. I didn’t speak of it often for numerous reasons. I didn’t want to discuss it while I was in the thick of it. I didn’t want to come off as negative, sorrowful, or angry. Finally, this past summer, I realized that wasn’t the healthiest direction; my therapist & doctor agreed as I was diagnosed with PTSD and depression.

The facial droops occur infrequently. My left side will weaken during intense neuropathy flare-ups, but I’ve spent months working on that side of my face. It’s scary to look at it, especially for Phil and Logan; their worry heightens. We have a protocol: cold stones, ice cap, and say the stroke words given to us: huckleberry, baseball, etc.

In my neuropathy group, I was candid about my face but was asked why I didn’t share with others close to me. I wanted to be that story of complete healing. Not a monstrosity story. It’s why I continued The Rustic Apothecary; it was the perfect disguise.

Nothing to see here, folks. Still hustling. Still pushing.

I ignored everyone’s advice because I wasn’t ready to grieve. I wasn’t prepared to say farewell to the woman I once was. That was when I decided to get off of Lyrica. I needed to feel it all. I needed to stand in front of the mirror and watch my face change, but as the corner of my mouth turned down through the tears, I smiled. I practiced for what felt like hours. Sometimes my facial nerves didn’t cooperate, but I’d smile anyway. No one could do this for me. Not Phil. Not my parents. Not my neurologist.

My speech would slur, so I would voice journal on my phone. Speaking aloud helped me get through those attacks.

This one was mild. Phil and I just left my ENT appointment.

In the beginning, my eyes would twitch and move, and my right eye would close. These are just two of the hundreds of selfies I had to document. Over those months, I deleted many of them because I was angry; every time I saw them, it was a harsh reminder. I don’t feel that way now.

I know I posted about my victories: the stairs, walking, and wiggling my nose, and it’s important for those newly diagnosed to see, but the aspects of this chronic disease are shitty. I’ve just begun, and I’m a year and a half in. I’m seeking and setting up appointments with new specialists here in Sioux Falls. I’m beyond grateful we have health insurance once again. Kudos to Phil’s new company for immediate enrollment.

I’m in the trenches with you. Every single day I fight. I research. I know my limits. Though it’s easy for me to retreat into my cave, I’m reminded of the story about Amaterasu. In the Shinto religion, she is the most powerful deity. In Japanese mythology, she’s the solar goddess. Her name means “shining in heaven.” Amaterasu got into a horrible argument with her brother Susanoo, the god of storms and the sea. Due to his violence, she withdrew into a cave, angry and hurt. As a result, the world fell into darkness.

Kami in Shinto are spirits or deities; the kami of merriment placed a mirror outside the cave and laughed. Curious, Amaterasu peeked outside and saw a lovely goddess but was unaware it was her enchanting reflection. Soon her anger and depression lifted, and laughter and love encircled her. Finally, she left the cave, and light once again filled the world.

I believed I belonged in the darkness. It was easier to stay there, to hurt, to be angry, but I was reminded when I retreat within the cave, my light goes with me. I don’t want that. I’ve walked in the darkness long enough.

I read far too often on social media and neuropathy groups where people have nowhere to turn. Information is scarce and thin with neuropathy if it isn’t associated with Diabetes. I want to change this. Expand from beyond my neuropathy group, especially for women who are told it’s just hormonal or migraines. If I would have listen to the first neurologist who treated me, I would not be here.

If you have neuropathy questions or you need to vent, I’m here. We are in the trenches together. You aren’t alone.

On a side note: I may stick here, and I may revive The Rustic Woman. I’m letting that lie still until I feel I have an answer.