Kate Cotter
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1
I lived with Trigeminal Neuralgia for 6.5 years (age 23.5 to 30), and had a Microvascular Decompression (Neurosurgery) at the Brigham on January 29, 2009 which wrapped my left Trigeminal Nerve in teflon. I have been pain free since then and while there aren’t any long-term studies for MVD success, I hope to remain that way. I have a husband, 2 kids and a very cute dog.
I was 23 years old. I was living with a family as a live-in nanny while I went to graduate school. It was Autumn; October, I think. One night, after the girls were all tucked in and the house was quiet, I was washing my face before bed. I splashed the water up and on my cheeks and felt a jolt on the left side of my forehead, a sensation that is extraordinarily difficult to describe. But that was the first one. I remember touching my face afterward, poking it, tapping my forehead. And nothing happened. So I went back to washing, splashed water on my cheeks a second time, and it hit me again: a bolt of lightning through my face, hot and electric, hard enough that I had to grip the sides of the sink to keep standing. That’s when the fear hit too. I figured, like most things, I would be completely fine the next day. But I wasn’t. I was walking down Mass Ave in Cambridge. It was windy, and the electric pain came back so hard and fast I stopped dead in my tracks on the sidewalk, and turned my back to the wind—turned away from the wind and away from the pain. But I couldn’t get away from it and I kept turning, spinning in place on the sidewalk. And then I froze. I was afraid to move. I remember thinking that I was going to be stuck on that sidewalk forever. But I turned, slowly, and made my way to my boyfriend’s, where I climbed into bed. I was in that bed for days. I was in too much pain to do anything. Every time I touched my face it felt like I was holding a live wire to the top of my head, as the current ran down the left side, through my eye, to my front tooth.
2
There is one thing, one minute, one sentence, really, that I think about all.the.time, even 15 years later, because of its impact. After FINALLY getting a TN diagnosis and living with pain for a couple of years, I made an appointment to see an ENT specialist because I had chronic sinus infections. Those infections, as you can imagine, made the TN Pain insanely worse: I’d have a full sinus and constant nerve attacks because of it. Talking, breathing, blowing my nose were all triggers when I had an infection. At the appointment, a fellow entered the room first. She was slight, with dark, short, curly hair. Female physicians always make me feel more comfortable, so I was glad to see her. She introduced herself as my Doctor’s fellow and asked me why I was there. As always, when at appointments, I started to give a preface about my TN. “I have Trigeminal Neuralgia on the left side of my face. It started in branch 1 but has grown to include branch 2. My pain is compounded by sinusitis, to the point where I will feel pain in the third branch as well…” That’s when she put her hand up to stop me. “I’m sorry,” she said, “are you a physician?” “No,” I answered. She put her hand down and shook her head. “OK.” She smiled. “Then just show me where it hurts.” I froze for a second, shut my open mouth, and silently pointed to the left side of my face. I did not speak another word to her. I was so shocked, so angry, and so humiliated that I even argued myself out of reporting her to the doctor when he came in. I don’t know what prompted her to say that to me--my correct use of language about my own rare condition? The fact that I was “too young” to have TN? Her own insecurity in her own position as a student? That a patient couldn’t possibly know more than someone who went to medical school? What I do know is the memory of that woman’s words silencing me still makes me shake with anger.
3
It has been over 10 years since I lived with TN pain. And I’m still trying to unpack all of the anguish and trauma living with that kind of pain creates. When you google Trigeminal Neuralgia, the first words you see are “The Suicide Disease”. I saw that on day 1. And I get why TN is called The Suicide Disease. And no one without TN can understand that. It’s not possible to describe or empathize with the kind of pain that TN creates. Immediately you’re put in a very lonely, very dark hole. Each day is a choice to look up for the light or down to the dark. It helped sometimes that no one around me could understand, because they were my light. But there were days (mostly the days before a storm came--gray, windy, cold days literally and figuratively) that I stayed in bed and asked myself if I wanted a future without a life, if I duped my husband into a broken wife, thought about all the things I didn’t want to face with TN: motherhood, especially.
And then there is the physical trauma. I still have to take a minute before stepping into the shower, over 10 years later. Every day I would have TN attacks (the equivalent of being electrocuted in my face) for putting on a shirt, opening a door, putting on mascara, chewing. Like someone was training me with an electric dog collar on my face to NOT do the things I needed to do to get through my day. Literal physical torture. I’ve done a little bit of PTSD trauma work with EMDR, but I can’t say that it’s helped a lot. The biggest healer has been time. Time without pain.