March 2nd, 2013

I was born with an eye condition,

My left eye drifted off.

So at the age of one, I had my first NF2 related surgery to correct my eye.

Unknowingly, of course.

By age 4, I had my eyes tested for the first time.

I failed it.

Well, my left eye did.

Understandably everyone freaked the fuck out and I was given my first NF2 related brain MRI.

Unknowingly, of course

At 4 my scans came back tumor free and the doctors scrambled for a reason why this was happening.

In 2000, NF2 existed but was not well known and the internet was practically non-existent, and so I was given a misdiagnosis and told to watch my eye and see if it got worse.

It didn’t.

At 14 I started ear infections constantly. During this point I was missing a lot of school and filled with anxiety.

At 15, the ear began buzzing and throughout that time I noticed a very small drop in hearing.

-My hearing loss was never sudden but gradual. I wasn’t losing sound but pitches that can only really be detected in a hearing test.

When I was little my school would test hearing but as we got older they stopped.-

At 16 I was tired of ear infections and the hearing loss.

My mom scheduled an appointment with an ENT and I was finally able to get my hearing tested.

I failed it,

Well my right ear did.

Again, I was ordered an MRI

This time, when the results came back, it was not good.

Positive: it wasn’t brain cancer.

But a condition where my body creates benign tumors along my nervous system.

Negative: it wasn’t just one brain tumor but multiple.

The unknown monster I had been fighting for 16 was finally given a name.

It was Neurofibromatosis Type 2, also known as NF2.

.

.

.

Fast forward to 2023

2 brain surgeries, 1 spine, and multiple little procedures later, but I’m still here.

Deaf, but still here.

And still killing it.

My family, my emotional support besties Laurel and Shelby, my therapists, my doctors and nurses at MGH and UIHC, all my fellow lovely NF2 fighters, my cat Banana, plus my entire experience with the English and Art departments at Mount Mercy all helped me in someway to grieve, grow, and accept myself for the person I really am:

The funniest and most positive Deaf girl you will ever meet.