My Diagnosis
Engaged, earning a master’s degree in social work, and preparing to move to Florida. That was my life on February 28th, 2016.
On February 29th, 2016 (leap day) my perfectly planned life suddenly became a mystery. What I thought was a bad reaction to a medication in the form of sudden hearing loss and vertigo turned into a month of misdiagnosis and fear.
The first ENT thought I had Meniere’s disease and put me on a strict low sodium diet to prevent another vertigo attack. The next ENT told me I had sudden sensorineural hearing loss and said the best way to test his theory—eat a cheeseburger. If it didn’t cause vertigo, then I probably didn’t have Meniere’s disease. So, I ate a cheeseburger. No vertigo.
Neither ENT recommended that I get an MRI.
When I went to my follow-up with the original ENT, he again insisted that I had Meniere’s disease and claimed that it was happening in both of my ears. After a lengthy disagreement with the doctor followed by me sobbing with my fiancé in the car, I decided to ask my step-brother to get me an appointment with a specialist.
Two days later I was sitting in yet another ENT’s office, but this time I had a giant needle injecting steroids into my eardrum in an attempt to bring my hearing back. The doctor also ordered an MRI and blood work and scheduled a follow-up appointment for the next week to get my test results.
That was the first time in weeks that I felt hopeful. Unfortunately, it was short lived.
As I lay in the MRI machine, the technician informed me that she just needed to get one more image and was almost done. A few minutes later, she came back to the speaker and said, “actually I need to take a couple more images.”
That was it. I knew she found something.
As I crawled off the machine, the tech saw the panic in my expression and quickly tried to come up with a reason for having to take the extra images. I wanted to believe her, but couldn’t let it go.
The following week I sat in the exam chair as the doctor pointed to the nose-shaped blobs hugging my brainstem.
Tumors. Two of them. Benign, but still bad.
He said the discovery of these tumors meant that I have a rare genetic disorder called Neurofibromatosis Type 2. As I sat there trying to hold back tears, he gently explained that there is no cure and that my condition will need to be managed with frequent MRI’s and hearing tests. He also said that my hearing loss in my left ear is permanent and eventually I will lose all of my hearing in my right ear.
I will become completely deaf.
I honestly can’t recall how I responded at that point. All I remember is my sweet soon-to-be-mother-in-law holding me while we both cried.
During my 45-minute commute home, I tried not to cry as I challenged God’s plan for my life. I couldn’t believe he let this happen to me—especially during what was supposed to be the happiest time of my life.
Towards the end of my tearful drive, the song “Eye of the Storm” by Ryan Stevenson came on the radio. That was my first time hearing it, and I couldn’t help but feel like that song was playing specifically for me.
The lyrics were the perfect reminder that I needed and offered me a glimpse of God’s grace at one of my weakest moments.
Now, a year and a half later, I look back on that day and think about the fear I felt. The overwhelming fear of the unknown. Part of me still deeply struggles with that fear, but a bigger part of me can’t help but feel grateful for my condition and the ways that God has used it.
My prayer for this blog is that it will be a message of gratitude and joy. I hope that it will bring a bit of encouragement to those who read it and a lot of light to those who need it.
If you want updates about our travels, subscribe to my blog to receive posts directly to your email. And if you want to keep up with us daily while we travel, follow me on Instagram at beingpositioned or Facebook @beingpositioned!