Own the Eqinox Day 16: I Hope that Hope Lights the Way
September 7, 2016
by Sarah Turner
Sarah is a Michigan mom of two daughters. She works in marketing and spends her free time writing, hiding behind her camera, and waxing poetic about tacos. Newly diagnosed with Usher Syndrome type 2, Sarah is adjusting, learning, and doing her best to be a hopeful advocate for progress.
I used to figure I was made of steel. I was strong and unyielding and there was nothing on the planet that could break me. That is the kind of thinking that comes from naiveté. Well, that and a heaping dose of imagination.
On the rare occasion when I would envision what on earth I would do if I ever received the bad news of a scary diagnosis, in my mind I was strong and I would shift into "get it done" mode. I would face the diagnosis head on and I would kick it in the butt, whatever it happened to be.
I found out last year that I am not made of steel.
My strength is not what I envisioned.
And I can be broken.
It started with a routine eye exam at the tail end of a not great couple of years - a divorce, the death of my grandfather, losing my job, then the hunt to find a new job. I was pretty mad at the universe already, so when the eye doctor told me I had pigment changes on my retinas, my reaction flip-flopped between complete panic and total denial.
Weeks later, a retinal specialist confirmed the diagnosis of retinitis pigmentosa (RP) and months later, my genetic test results confirmed Usher syndrome. This was unsurprising to the doctor given my life long hearing impairment. Me, on the other hand? I was totally surprised. And stunned. And heartbroken.
To say I didn't handle the diagnosis well is a complete understatement. I tried to keep a brave face on, but I spent a lot of time wearing my fear like a heavy blanket. I also spent a lot of time crying and trying not tell people I was crying, because have you ever met anyone who likes the girl who is sad all the time? You haven't. No one likes that crying girl. She's emotionally exhausting.
The unknown - it's a tricky beast. Usher is rare, so I didn't have people in my day-to-day life who could understand what I was feeling. On the flip side, if you read about it on the internet, you'll convince yourself that every worst case scenario is your future. Which I did. Because of course.
For so long I assumed I was just months away from becoming totally deaf and blind (and alone - because why not go for the ultimate trifecta of scary scenarios if you're making yourself crazy?).
Most people seem to get the diagnosis younger than I did -- and the fact that I had so many decades free of thinking about my retinas is a huge relief.
Do you know how often I think of my retinas?
To be honest, I think of them a little less often this year. Or I'm trying, anyway.
After a year of assuming the worst, I made an appointment with Dr. Stone in Iowa. At that appointment he said the words I needed most: He gave me permission to stop worrying and to just live my life as best I can.
I didn't realize I had been waiting for someone to tell me it was okay to let go of the fear and the anger until I heard his words. Then, it was like I had been holding a bunch of balloons - and I opened my hand to let go of the strings and release them up to the sky.
I still think about it.
How could I not? I spent a year thinking of nothing but my retinas and it's hard to entirely let go of that. I think about it in dim lighting when it's harder for me to see. I think about it when I trip over something. I think of it when my insurance company tries to raise my employer's insurance costs for fear of what I might cost them (not much, y'all - there are currently no treatments or cures…just eye exams).
And I think about it as we roll around to the second annual Usher Awareness Day because this is my chance to tell people about Usher. It's my chance to do what little I can to drive change. It's my chance to tell you about a degenerative retinal disease you might not know about, to tell you about the leading cause of deafblindness. It's my opportunity to encourage you to make a donation to the Usher Coalition. It's my shot to tell you that with an election coming up, you've got the privilege (well, speaking for those in the U.S., anyway) to elect people who support medical research and will support the journey to find cures. That’s all BIG stuff.
I wanted to end this on an uplifting note, something that rings of hope and progress. Instead I’ll add a dose of my reality.
In the midst of writing this post, I went away for the weekend and went on an evening boat ride. When we arrived back to the dock, I struggled to get off the boat in the dark. My teenage daughter guided me by my elbow. We used our iPhone flashlights so I could navigate my way back to the house without tripping over something, falling or stepping in anything gross.
I was embarrassed and frustrated and upset. I was sad.
I was mad at myself for not anticipating the darkness and how much tougher it'd be to find my way. For a while, I was mad at my eyes and my genes and Usher syndrome for taking my fun night and making it a challenge.
Life is full of challenges. This is mine. And as we approach Usher Awareness Day, reading the stories, learning more, and helping us inspire change is yours.