When I was 15, I developed a wicked ear infection. After rounds of intervention and antibiotics (but no relief), my family and I decided to move forward with an exploratory surgery. Little did we know that would be the last day of my old “normal”.
In surgery, my doctor discovered a deadly bacterial infection that had started eating away at my skull and seeping into places it shouldn’t. A PICC line was inserted for my prescribed post-op treatment of IV antibiotics.
The following eight weeks are a bit of a blur. While other HS freshman were concerned about who they were taking to homecoming, my house was littered with biohazard containers and a home nurse drew my blood once a week at the kitchen table. Every eight hours, my parents would flush my PICC line with a syringe of saline and hook me up to an “antibiotic bomb”. But about six weeks into treatment, I started facing a myriad of odd symptoms: I would run into vending machines, fall down stairs, and was unable to focus my vision on a singular object. I was dizzy 24/7…but why?
Fast forward to a month (and umpteen diagnostic tests) later, and I was diagnosed as a vestibular wipe-out. The antibiotic had wiped away my entire balance system, an irreversible and devastating side effect that I knew very little of. I had to relearn how to walk, how to read, how to write in a straight line, and how to cut vegetables (still working on the last one). My vision has bounced every single second since.
As a result of this trauma, I’ve also developed chronic, daily migraine (I’ve had one almost every day since I was 15) and have endured a total of 13 surgeries on my ears/skull. I’ve been on over 100 medication combinations (both abortive and preventative), have tried various nerve blocks with mixed results, inpatient and infusion programs, acupuncture, elimination diets, supplements, cranial massages, aromatherapy…you name it. But as it turns out, no amount of optimism or creativity will grant me much relief as my particular brand of head pain is caused by my lack of a balance system. Bouncing vision causes constant throbbing. Some days are better than others, and I’ve mostly adapted to this life of constant pain.
I’ve learned a lot of lessons along the way but the biggest one is this: a diagnosis doesn’t mean your life is over. It just means you have to find a new way to sail. The waters are always choppy, but if you can hold on, the sunset sure is worth it.
My life isn’t easy, but it’s the only one I’ll have a chance to live. So, amidst the relentless throbbing and ceaseless nausea, I’ll keep telling my story to anyone that needs to hear it.
In case that’s you, I hope you know that you’re not alone. You are strong, you are worthy, you are enough. I see you fighting. Just keep going.
