TN Awareness, Cookie

As most people in my life are aware, for 6 years I battled a demon called Trigeminal Neuralgia. TN is a disorder of the 5^th cranial nerve, where the nerve “fires,” when triggered by things like a light touch, wind, chewing, or speaking, causing extreme, lightening-like pain. In my case it went from the top of my head down the left side of my face. Trigeminal Neuralgia is a relatively rare disease; the current statistics are 1 in 15,000 or 20,000 people world-wide, and it often affect women more than men. Trigeminal Neuralgia is the most painful disorder known to medicine.

I was diagnosed with TN at age 25, which was also rare; most people with TN are age 50+. After years of drugs and research and fighting and heartbreak, at close to 31 years old I finally had a neurosurgery called Microvascular Decompression. The MVD relieved my TN and today I live free of TN pain. I can’t tell you that will always be the case, but for now, I am thankful for every single day I do not have pain.

October 7^th is Trigeminal Neuralgia Awareness day. I’m late, I know, but I have been thinking about the things I learned from dealing with TN—lessons and behaviors that will never leave me and have shaped who I am today. So. Here goes!

 “Lessons” learned from living with Trigeminal Neuralgia:

1.    You must be your own advocate.

During my 6 years with TN, I wished over and over that Dr. Gregory House was real and not just a TV character and that he would fix me. Yeah, he's not real. I had to find a Doctor that listened and that treated me with respect and that understood (as much as possible) what I was dealing with and the kind of solutions I was looking for. And that was a constant challenge. Bottom line: the medical system does not just work for you, you must work it. Doctors have fragile egos, did not want to hear what I thought, and did not want to hear what I knew about TN. However, when you have TN (or, frankly, any other chronic issue), there is no bigger job than advocating for yourself. Write everything down. List your meds. List your appointments and who you saw. Document what they said. Part of this is because your drugs make you forget, part of this is because no one can remember a medical history that will be as long as yours, and the biggest part of this is because, most likely, you will be driving this ship and you need to chart the course. 

2.    You can do this, as much as it feels like you can’t.

With TN, I had to say those words every day, every hour, sometimes every minute. When a hair brushing across your face can send you to your knees with lightening pain, saying “I can do this” was the only way to get out of the door, to get in the shower, to put on a shirt.  It’s the only way I could continue to fight. Saying “I can do this” was the equivalent of putting up the steel wall to the pain and remembering that just as it would strike, it would also end. Until the next time.

3.    You are fine.

This was one of my worst days. But you can't tell.

This was a lie a lot of the time. But I had to fake it to make it. Especially since TN is an invisible disease. Like so many health issues people face these days, no one can see TN pain. The comment that made me want to laugh and cry was: “Oh, well you don’t look sick!” (I still have no idea what that means.) But when I was trying to have some semblance of a life, a relationship, a job, a home, I had to have the public face, the “I am fine” face. It’s the face I’d try to have even though my left eye would be tearing up from pain and the person talking to me would stop and ask if I was OK. “I’m fine, keep talking!”
It’s what I’d say to myself when I’d be stuck on a sidewalk on a bridge in the wind. “You’re fine, you’re fine, just get to the other side.”
It’s what I’d say to myself when we were out to dinner with friends and I had to stop mid-sentence to take a deep breath and get past an attack. I’m fine. I’m fine because if I don’t say that I’m fine, than I lose and TN wins. And that’s a big fight to lose. Being fine meant I had a future. I needed to have a future.

4.     You need your people.

The problem with “I am fine” is that I started to think that I could handle everything on my own. TN forces you to live inside your own thoughts a lot of the time, working out your fears. I still have this problem where I take on so much without asking for help because I trained myself not to ask for help. But “I am fine” should not equal “I am alone”. Because it doesn’t, and I learned that over the years with TN. I had friends who made the hardest days easier just by the smallest gestures: a hand on the back during an attack. A cup of tea. An umbrella to hide behind. An offer to pick up my lunch because they knew that going outside in the wind wasn’t possible.  It constantly surprised me to see people help and love in their own way; not because I didn’t expect them to, but because I never asked for it. Many of the friends I worked with during my TN years are no longer people I see every day. But they have a special place in my soul, forever.

My funny friend Allie and my stapled head.

My husband went through every moment of TN hell with me and I know it hurt him almost as much as it hurt me. My sister had more crying phone calls than anyone should listen to, and talked me off a ledge more times that I can remember. My family was afraid for me. But from my mother bathing me after my neurosurgery to my father calling to firmly speak to my doctors; each of them played a role that was uniquely needed and uniquely suited to them.  I am grateful beyond words, even today.

5.    Trust your gut.

This lesson came to me again and again throughout my TN journey. Just as I knew from my first TN attacks that this was NOT normal, there were certain things about my condition that I knew in my gut, my soul, my bones. I could trace my TN’s behavior to blood vessels, even though there was nothing showing on the MRIs. I just knew. I knew when I had to switch doctors because they were giving up on me. When I read about several different surgeries, I knew an MVD would help me. When I met my surgeon I knew he was going to help. I can’t tell you why I knew any of this. I just knew in my gut. Part of this trust in myself was simply self-preservation, like saying “I can do this.” I had to trust myself that I knew better than anyone else what was wrong with me and what would fix me.

Having TN is awful. It just sucks in so many ways (don’t worry, I won’t list them). But the AMAZING news, and the most important lesson of all, is that we are all gamblers*, and we all get more than one hand of cards in life. I had a really shitty hand for a while. Then I got a better one. But no matter what your hand looks like, it shapes you, teaches you, helps form the person you are so you can see that hand and decide what to do with it. See you at the table.

*My sincere apologies to Kenny Rogers

Click here to read about my whole TN/ MVD journey.
And click here to read about a friendship that grew from TN.