Over the holidays, Jon and I decided to record my cover of “Go Ego” by Eight And A Half. I wouldn’t normally dedicate a whole blog to a song I’ve been working on, but this isn’t a normal song to me. “Go Ego” followed me through the darkest and most vulnerable period of my life. I’m someone that doesn’t usually struggle with sharing my vulnerable moments, but this is a period of my life that is still hard for me to talk about. I’m not sure how much I’ll share, but we’ll start with some context.
This all took place in 2015. The year actually started off with a lot of hope; I had a diagnosis, I finally had a medical team that I loved and trusted, and I was awaiting my first neurosurgery. I think it’s really important for people to know how much hope I had invested in my first surgery. I knew there were risks going into it, but there was no doubt in my mind that it was going to bring back the life I so profoundly longed for and missed. As you probably know, that’s not exactly how things worked out, though. I did get 3 months of relief that I’m very grateful for, but the complications and the return of the pain weighed on me heavily. When I came to the realization that my life wasn’t going to go back to normal, I completely broke down.
The feelings of grief and loss that I had worked through for the last year and a half came flooding back. I missed school. I missed my friendships. I missed sports. I missed volunteering. I missed the old me. The hope I had for this surgery made me feel like those things would be attainable again – like they were almost within my grasp. Now suddenly, they were ripped away from me for a second time. My family was devastated. All I could think about was how much stress I had put them through, how much money I had cost them, and how much time I was taking away from them. My overwhelmed brain had created this really horrible internal narrative of “this is your disease, so therefore, you’re the burden.” No one in my family ever made me feel like that or even said anything that would be remotely indicative of that, but that’s the thought that constantly rang in my head. That’s when the suicidal ideation began. My thoughts started getting more complicated and things like “you’re a burden to your family” turned into “it would be easier on them if you weren’t around”.
I think this is where I start to get uncomfortable. Mental health is still a taboo subject that isn’t talked about nearly enough, despite its prevalence in today’s society. When it comes to my physical health problems, I’ve never had anyone (that matters in my life) assume that I caused them or that I wasn’t doing everything in my power to try and manage them. I haven’t always had that same experience when speaking about my mental health and a reoccurrence of that is something I fear. There’s no blame to place on anyone in this situation, though, and my family and I really did (and do) try our best to manage both my physical and mental health. Illness is just complicated sometimes. Regardless of the exact events that led up to my hospitalization, medication and therapy were not doing enough for me at the time and I needed stronger intervention.
Hospitalization was rough. Again, I don’t feel like I need to elaborate on specific events, but it’s hard to feel like a respected human in a psych ward. Add in that I had a complicated situation with my physical health and it was just a really difficult experience overall. But this leads us to the song and why I wanted to write this blog. During one of our daily activities, the recreational therapist found out I liked music and that I played guitar. Soon after, he brought up an actual guitar for me to play during our free time. Up to that point, my interactions with the staff at the hospital hadn’t been great. The act of giving me a guitar was the first thing that made me feel like I wasn’t just a patient, but a human that still deserved kindness. At the time, I was still convinced that I was nothing but a burden that didn’t deserve people’s time and affection, so this small gesture meant a lot. I hadn’t performed music in front of anyone since I got sick, but other patients started asking me if I knew certain songs and we all started singing together. Being able to have music changed my experience entirely and made the days easier to get through. One day while in the common area, I started singing the song Go Ego. I got to the last lyric of “at the edge of my life” and started tearing up. I had that realization of “I’m actually at the edge of my life”. When you’re that low, there’s really only two options ahead of you. You can stay there or you can make the slow climb up. Of course, it’s not that simple and it takes a lot of work, but at the very core of it, I knew that I didn’t want to stay there.
Shortly after my hospital stay, I went to the Intensive Pain Rehabilitation Program for 6 weeks where we did physical therapy, psychotherapy, occupational therapy, recreational therapy, and more. It was the start of accepting that Trigeminal Neuralgia is in my life to stay. Instead of fighting it and getting worn down, I needed to learn how to live with it and adapt to it. After IPRP, I started sharing my chronic illness journey on Instagram. Over the last 5 years, I’ve met so many wonderful people that have similar stories and experiences. I’ve been able to connect with TN warriors closer to my age. I’ve been able to share resources and make other people’s journeys easier. I’ve found my community and my reason to keep climbing.
I guess I’ll wrap this up by saying that I am so incredibly grateful for my community and for the people that have stood by and supported me through every high and low. Thank you for letting me share my thoughts and my music with you.