Cassiopeia. Orion. Ursa Major.

I listen to a lot of podcasts when I drive lately. My patience for the radio is low - the same songs over and over again. My drive home coincides with the local top 40 station making a dance mix of everything for an hour and I can't stand it, so… podcasts. 

It started with the podcast of some friends of mine. Then Serial. Then other things. Some are great, some are…less great. It takes up time, makes the drive easier. 

I recently started listening to NPR's "All Songs Considered." In college, I loved how I was always able to find new music - I loved being ahead of the curve, to have a library full of more than just what got radio play. "All Songs Considered" is giving that back to me - and it's ultimately going to end up costing me a fortune in iTunes downloads.

I was driving home from my daughter's gym meet. It was dusk when I pulled out of the parking garage. I'd have been on the road sooner but the garage attendant insisted on collecting everyone's parking ticket as they departed. I had hoped to be on the road sooner.

Twisty roads, "All Songs Considered," and a new song - Gacha and "Waterfalls."

My eyes scanned the sky - and nothing.

Darkness. Darkness. Darkness.

As I drove, my eyes would periodically shift towards the sky - looking for something, anything. And yet… nothing.

Agitated. Scared. On the edge of tears.

Well, maybe it was just cloudy.

You see, when I went in for my doctor's appointment in Ann Arbor, one of the questions they asked me was, "Can you see the stars?"

"When it's not cloudy," I responded. But as I drove Friday night I realized: I can't remember the last time I noticed the stars. Was it because I've just not noticed or because they weren't there for me anymore?

By the time I pulled into my garage, I was eager to run into the house, throw down my purse and race to my back deck to look out. Well. I couldn't see the moon either. I know I've been able to see the moon, lately.

How relieved was I - when I finally got the nerve to ask - to find that there were no stars to see, it was too cloudy?


I've tried not to read much about retinitis pigmentosa - mostly because it all terrifies me. One of the things I've read several times is that so many people can no longer see the stars. Can you imagine the night sky above you - a dark, blank canvas?

As I stared into the sky Friday evening, I was wracked with fear - Is this how it's going to be? and Did I lose the stars and not even notice?


We went out to dinner Saturday night. Chris and I tried a new-ish taqueria in Grand Rapids. Margaritas, chips loaded with queso, pork belly tacos. We chased dinner with handmade ice cream from a local creamery (vegan ice cream? What is it made of?). 

When darkness fell, i looked up. I saw nothing. 

"Are there stars?" I asked him. 

He scanned the sky, "Not much. Just one." He pointed.

I tipped my face upward to where he gestured.

The stars aren't gone for me. Not yet. I saw it. And I've been looking ever since. 

I can still see them and I will keep noticing them and I will keep counting my blessings that they're still there shining on me. 

I hope to never stop seeing them. 

There are days when I have a lot of hope and there are days when I want to dive face first into a box of Cheez Its.

A friend told me recently that since I wouldn't have known anything was wrong if I had not offhandedly mentioned it during a routine eye exam that perhaps I should just pretend that this thing doesn't exist - that I don't know about it. And she is so very very right except… that's not how my brain works. I am a glass half empty, assumes the worst, the sky is falling kind of person.

I can't pretend it doesn't exist because I'm too busy being scared of it.

And the thing is, I've been fortunate enough to have been given hope by people who care enough to inform me that listening to my brain may not be the best idea. There's a lot of research going on right now - some of it nearly ready for clinical trials - and who knows, maybe in ten years there will be a treatment that stops all of this before it gets too bad. Or brings back anything I lose.

I have been angry at the world. I have been scared. I have been hopeful. I have been loved. I have been heartbroken. I have a whole bunch of feelings - sometimes all at once - about this diagnosis.

One of the things I hadn't anticipated was how hard it would be to not truly know my diagnosis. I have currently been diagnosed with retinitis pigmentosa - but my diagnosis is quite likely Usher Syndrome which would mean that the hearing loss that I've had all my life is tied to this vision thing I've only recently started experiencing.

Weird, right?

The onset of the vision stuff is fairly late for me, I'm told - which should bode well for me overall. This makes me hopeful in the moments when I dare feel hope. Sometimes I dare.

The statistics say that about 50,000 people in the United States have Usher Syndrome, which means that this is a pretty rare thing, because of course. 

And all of this is even more of a shock to the system because the things I love most to do - photography, reading - rely so heavily on my stupid eyes.

By the way, that's the name of the folder in my Gmail where I store all my messages with the genetic counselor, and other people relating to this eye hooey: "My Stupid Eyes." 

I've never really been one to let life kick me in the teeth though. I feel like I've been run over by this diagnosis, and I've probably cried a gallon or two of tears in the past several months, but the moments when I can let myself envision making a difference somehow, those are the moments I feel strong, the moments when I feel like maybe I still have a little bit of control here. 

Because I am still at the point where this is often sitting right in the front of my brain. I am told that I'll get to the point where it's not all that I think of, but right now - I'm just not there yet.