8 Years With Trigeminal Neuralgia

Anniversaries can fucking suck. I know that’s a bit of a harsh opening, but it’s true. July 13th, 2021 marked 8 years of living with Trigeminal Neuralgia. 8 years – 96 months – 2920 days – 70,080 hours of living with this monster. No matter the measurement of time I choose, there’s this weird phenomenon where it feels like this all started yesterday, but also like it was an entire lifetime ago. Looking back, I was just a kid 8 years ago. A kid getting ready for a lacrosse game, completely oblivious to what would happen when she brought that eyeliner pen to her face. A kid that thought she was dying as she writhed on the floor in pain. A kid whose life would never be the same again.

On these anniversaries, I feel like I have to face that kid. Like I have to look her in the eyes and find some way to explain that, while she will grow as a person, so too will the pain and the trauma. It’s hard to feel like I didn’t fail that kid. Logically, I know that most of the events of the last 8 years were completely out of my control, but I just wish that I could go back and tell her that we’re okay, that we’ve got things figured out, and that we’re thriving. There’s no way that I could admit how lost I still feel 8 years later. That I still haven’t been able to achieve a lot of the things we wanted to. That I wake up everyday and have to actively count my blessings, so as to convince myself that a life full of pain is actually worth living. That I sometimes worry that hope won’t be enough to battle the realistic situation ahead of us. It’s in these moments that I wish so desperately for my future self to come and tell me that it’s going to be okay.

I try my best to celebrate on these anniversaries because it is so easy to go dark when you’re reminiscing on pain. I know a lot of people probably wonder what there is to celebrate; I, myself, struggle with this sometimes. I think the obvious thing to celebrate is that my last surgery did give me some relief. It wasn’t perfect and I’m still in a lot of pain, but it’s nothing like it was before. I don’t have to worry about going to the hospital every week, screaming in pain, and getting a medication that absolutely destroys my body and mind. Because of that, my family doesn’t have to be on edge all the time anymore, which makes me feel like less of a burden. I’m celebrating that I was able to get my port out and that I could lower the dosage on one of my medications. The change has been rough, but it’s a welcome rough. I’m celebrating that I got to move out and experience some level of independence. It’s an added bonus that I live with a cute boy whose willing to retrieve Tim Hortons at any time. I’m celebrating the community and the support system that has come out of this. I have truly found my people and when I do the daily counting of my blessings, they are the main reason I choose to live. There is so much more to recognize and celebrate, but those are some of the biggest things.

As necessary as it is to celebrate and not go too dark, it’s also necessary to grieve on these anniversaries. Acknowledging that the past has been fucking traumatic and not trying to push that down with toxic positivity is important. I grieve for my health. I grieve for the kid that didn’t get to finish her childhood; the kid that missed out on high school dances, graduation, and minimum wage jobs. I’m told I didn’t miss much there, but I still would’ve liked the choice. In general, it’s hard to know that I missed out on a lot of opportunities and experiences that most people get. I grieve for the friendships that couldn’t handle this disease and the people that walked away. The people that really matter stayed or came back in the end, but that doesn’t make the loss any easier. I grieve for the time lost to hospital stays, surgeries, medication adjustments, long drives to specialists, and bad pain days. No matter how I try to reframe that and stay away from words like “lost” and “wasted”, I recognize and accept that that’s what it feels like. Lastly, I grieve for predictability. I know that no one can truly predict what will happen to them, but I wish that I could make future plans without having to worry if my health is going to hold up. These are all things that I continually work through in the vicious, cyclical process that is grieving, but I think it’s particularly important to grieve on these big days.

So with a lot of tears, laughs, hugs, and treats, I survived my 8th TN Anniversary. I wish this was something my loved ones and I didn’t have to celebrate, but I wouldn’t want to celebrate with anyone else. It may be 8 years of living with this horrible disease, but it’s also 8 years – 96 months – 2920 days – 70,080 hours of living with the most loving community out there. From the bottom of my heart, thank you for being here, for loving unconditionally in the face of this ugly monster, and for helping me turn that ugly monster into something worthwhile and beautiful. I love you. Also, FUCK TN.