When I was 10, I would try to imagine what my life would look like as an adult. It excited me to think about all the opportunities and responsibilities I would soon get to experience. Growing up couldn’t come soon enough.
When I was 13, I thought I was invincible. I thought that through ambition, determination, and hard work, I could achieve whatever I desired. Hard work replenished me instead of exhausting me. I didn’t have to think about obstacles such as health, finances, and other people standing in my way.
When I was 15, I was forced to grow up. As pain and the new reality of ill-health settled in, childhood naivety and blissful ignorance blew away. Unpredictability became normal, the hospital became my new home, and hard work became seemingly futile and useless. I started fighting.
When I was 16, I heard the words that would forever change my life. There was a name and a face to the invisible entity that I had been fighting for over a year. Though, with a name and a face, came a brutal prognosis and the deterioration of hope. I still fought.
When I was 17, life became a rollercoaster with no foreseeable track at the end. I started the year with the hope of surgical relief, but it came crashing down when the relief only lasted 3 months. I hit my rock bottom and needed to be hospitalized after my hope completely ran dry. I spent 6 weeks of my life learning how to cope with and live with the pain that I’d have for the rest of my life. I learned how to fight efficiently and effectively.
When I was 18, I realized that being an adult was nothing like I had pictured. I wouldn’t be graduating, going to university, moving out, or even getting the Costco card that I had always imagined getting. I felt like the world was moving on without me. There were times when I was unsure what I was fighting for, but I knew that I wanted to keep fighting.
When I was 21, I was the sickest I’d ever been. My pain had progressed exponentially over those 3 years. I had a power port implanted in my chest. My body relied on medications and weekly infusions just to get out of bed. Serotonin Syndrome permanently changed how my body functioned. My scans finally showed the problem and I was scheduled in for surgery once again. I was fighting to live, instead of just surviving.
When I was 21 1/2, surgery drastically changed my life. Although I still struggle with daily pain and the odd hospital trip, the intensity, duration, and frequency of my attacks has lessened. I was able to move out, raise awareness through different events, and even take on the leadership role for our local Trigeminal Neuralgia support group. I solidified my reasons to fight this disease.
Now, I’m 22. Every part of me wants to be excited and hopeful, but to be honest, it’s hard not to dread every birthday. It’s painful to watch the world move on without you; to watch your age increase, but to feel like you’re not hitting the same milestones that other people your age are hitting. It’s painful to realize that I will never get the last 7 years of my life back; that I wasn’t given the chance to utilize that time in the way that I would’ve wanted to. However, I also realize that every time the world has given me pain, I’ve fought and I’ve turned it into growth. So although I haven’t hit many of the traditional milestones, I’m 7 years wiser and stronger. I’m trying really hard to associate my age with character growth, rather than the things I have and haven’t accomplished. I’m proud of the things I have accomplished, but I’m more proud of the ambition, determination, perseverance, and resilience that it took to achieve those accomplishments. I’m proud of the way I fought.
I realize and have accepted that I will live with this pain and it’s progression until there is a cure. Although I still sometimes struggle with the unpredictability and lack of forward motion, I take comfort in knowing that I’m trying my best and that I’m not alone. As long as I’m growing as a person and as long as I’m fighting, I don’t care how many years this disease takes from me or how many things I may or may not accomplish. I have the most amazing support system that has guided me through the last 22 years of my life. I know that if I ever forget the reasons why I fight for myself, I can at least fight for them, as they’ve always fought for me.
Thank you for making these 22 years worth fighting for.