Knowing the exact date you got sick is a blessing and a curse. Going to doctors I’m able to give them a very concise history of when everything started. However, I’m constantly reminded of that day, every year. I’ve talked a lot about my chronic pain journey—especially when it comes to my brain tumor—but I thought today, on this morbid anniversary, I would give you some insight into how this all started.
New Years Eve 2008. I was a senior in high school—I had applied to colleges, had my final winter dance concert with my high school dance team, and had just spent the beginning of December traveling through Washington with my best friend (Okay, we went to Forks, alright? We were obsessed with Twilight and convinced our moms to go to Forks during one of Washington’s worst snow storms. Still, hands down, one of the best trips of my life). I was supposed to hear from another friend of mine about our plans for ringing in the new year. She told me she would text me later that day—spoiler alert, she never did (Now THAT is a whole other story).
As the day progressed, I could feel my head start to pound. I had never felt this way before. I cradled the left side of my head as the throbbing pain shot through my ear and into my temple and eye. The pain was excruciating. I tried to take some Advil to help, but felt no relief. My mom called me down for dinner where a nice big steak was waiting for me, a special New Years treat. I had a couple bites, pushed my plate away, and asked to be excused. This made my parents really take pause—I never turned away steak. I returned to my dark room, put on one of my favorite movies, and climbed into bed. I thought it must just be a bad night, it’ll go away after I get a good night’s sleep. I woke up the next morning and the pain was still there, not as intense and localized as the night before, but my entire head felt a dull ache. Maybe I was coming down with something? A winter cold, that must be it. I’ll get over by the time school starts back from winter break.
School starts in again, and the pain is still there. It’s constant, morning to night. I’m never left without some sort of headache. This is the second semester of my senior year. Competition season is starting and I’m dancing almost 15 hours a week. I don’t have time to be sick! But one thing I’ve learned in dealing with chronic pain—your body doesn’t care if you have important things to do, it will always betray you. I started missing class, going home from school at least once a week. I would make it through the first half of the day and be in so much pain, my eyes could barely stay open. I had to have a doctor’s note to help explain to teachers that I wasn’t just skipping out for fun. I know most of them probably didn’t believe me. It’s been ten years, you believe me now?
I would try my hardest to make it to dance classes at night; other students were relying on me, we had dances to learn before the end of the year. My adrenaline would get me through a hour class, but once I was finished, the pain would smack into me like a hammer. I would be sobbing the entire 15 minute drive back home. This was no way to live my life. I couldn’t do the one thing that brought me the most joy.
I started seeing different doctors. I had my first MRI, but it showed nothing. No one could figure out why I was having this constant pain. They questioned my past medical issues, thinking that my history with acid reflux that they diagnosed as abdominal migraines might have shifted into regular migraines, but they couldn’t explain why I was having these every day headaches that weren’t migraines. One doctor thought biofeedback would be beneficial. Biofeedback is a pain management tool where you are training your mind to control involuntary functions—kind of like meditation with electric wires. I thought it was a load of bullshit and didn’t feel any different. Other doctors so kindly told me that I was obviously depressed and that my pain was all in my head, no pun intended.
I ended high school unable to attend senior events, having to sit out of special dance master classes, and in an immense amount of pain. I was going to be attending college in the fall. How was I going to handle my deteriorating body a state away from everything I knew, thrown into the craziness of freshman year of college?
Ten years later, here we are. I survived college, been diagnosed with a handful of other disorders, three surgeries, two months of radiation therapy, countless doctors and prescriptions, an absurd amount of needles that still give me nightmares—still no relief. Those first six months—hell, that first year— was a cakewalk compared to now. I would give anything to go back to the pain I had back then. I used to think, “there’s no way the pain can get worse than this,” and then the next problem would happen and I was proven wrong.
This isn’t a “please feel bad for me” kind of post. This is just my life. This is how I live every day of my life. I work as hard as I can to better my life and my situation, but you know, sometime it just gets too hard. So you stop. You take the time to wallow and rest, and when you’ve built up enough strength, you go back to fighting. To building your life. A life with chronic, constant pain that will never go away.
I hope in 2019 I get a job that I can actually do, despite my memory and concentration problems and the obvious constant pain. I want to write a book—I wrote a lot this year and had so much fun with it. I hope I can find a way to not have to rely on my parents for everything: financially, emotionally, physically. Honestly, I wouldn’t be here if it wasn’t for their support and understanding. But I do know they would love to get me out from under their roof so they don’t have to look at all my books all the time.
So here’s to the next ten years, I guess? And to my body, if you’re listening: Lay off, will ya?
I can so much relate to this post but comparably little pain than yours. Working for getting my dream job. Hope you 2019 fulfil all your dreams and take you to better place. Good luck cheerios!