Tis the season for the blues

The one thing I have noticed since my diagnosis is that my feelings are so much more...feelings-y. I've always been emotional, but since finding out about the RP and then Usher syndrome, not only do I feel ALL THE THINGS, I feel ALL THE THINGS on a massive and astronomical scale.

And that includes stuff I had never had much experience with. Always I worrier, I never truly felt anxiety before my diagnosis. Now, I'm prone to waves of it. About stupid stuff. Far more frequently than I would care to admit.

Right now, I'm in the midst of one of those evenings. It's been, to quote Lin Manuel Miranda (a fave in our home) a "bit of a day" -- today is the day of the annual cookie decorating party that I've thrown for my daughters every year, for more years than I can remember. We bake dozens upon dozens of cookies, invite their friends over to decorate and take cookies home with them. Laughter and sugar buzzes ensue.

Like I said, we've done this for years.

This year, none of the friends my youngest daughter invited showed up. And only one RSVPd to say that they'd be unable to attend due to a familial holiday obligation. It's Christmas time and the week before Christmas no less - I know it's most certainly the season for calendars to fill up with other stuff... but damn, y'all. Pick up a phone, would ya?

THe look on her face when she realized no one was coming ripped my heart in half. I didn't know what to say. I didn't know how I could make it any better. How could I make it right for my eleven year old when her fourteen year old sister's friends all showed up?

There's no other way to describe it, really - but HORRIBLE.

We eventually managed to have fun decorating (and eating) cookies, but I never stopped hurting for her.

Even now, hours later, tears sting my eyes and I just wish I could do something, ANYTHING, to make up for the fact that her friends were so careless with her feelings today.

It's HARD. And I'm tired of things being so difficult.


It's dark a lot at this time of year. It's dark when I go to work, it's dark when I come home. Often these days, it's snowy too. I don't want to drive in the dark and snow. I just want to stay home. A drive to Target this morning left me so tense, my arms and back hurt. Not because I couldn't see, but because I'm so afraid of hitting a patch of ice and crashing. (Turns out, the confidence of 20+ years of uneventful winter driving is wiped away with one patch of black ice and a telephone pole).

I get scared about my eyes and it's a weird thing to me sometimes, to be worried for my children and the hurt they feel at what's going on in their day to day life and to be scared by the fact that I'm losing my vision... because while that's always looming, at least that isn't happening today or tomorrow.

But still.

I sat on the floor of my daughter's room tonight. We were both feeling "smad" - our word for sad and mad. I couldn't say anything to fix it. We talked about it a little bit, about what made us feel sad and what made us feel mad. I told her I wanted to curl up in bed and have someone else take care of stuff for awhile and she said to me, "We need to invent something really cool and then we can hire a maid."

I can't fix any of it. That bothers me. All of it feels like it's out of my hands, and that's not great for me.

I found myself getting anxious about a work project. All of this other stuff is swirling around me - sadness for my daughter and anger at the sixth graders and their parents, stress about my eyes, exhaustion with winter and its shorter days. All of these emotions make it far too easy for anxiety to sneak in. I have no real coping skills for that; I've never really felt like this until now.

It doesn't seem fair. I don't know how to fix it. I'm so tired of ALL THE FEELINGS.

I know that a new year won't make it better on its own. That I probably have some work to do to change much of this, but right now it feels like an awful lot.

You don't have to see it the way I do.

In just over two weeks, I am going to be 40 years old. This is a fact that I'm having a difficult time warming up to and it's also causing me some distress because I never claimed I was going to age gracefully and I most assuredly am NOT.

I can run a lot further than I could at 30. I'm not changing diapers or chasing a toddler like I was at 30. But 40 is a different animal for a lot of reasons. Mostly because at 30, I thought I was just fine... and now I have to remind myself that I will be.

Last week, my employer handed me an insurance form and asked me to have my doctor at Iowa fill it out and return it. Again, it seems the insurance company saw my appointments and got a little freaked out: "Uh oh, this woman is gonna cost us money." They are now quoting my employer an astronomical hike in the cost of our company insurance plan. Affordable insurance for my employers to provide for us hinges a lot on this form.

I hate that feeling.

And while the folks at Iowa promptly filled out and returned the form, it is a reminder to me that no, I will not be costing the insurance company a bunch of money because there are currently no treatments for Usher.

It's an ugly feeling - this sadness about what is beyond my control blended with this irrational sense of responsibility for costing my company so much money (I didn't even hit my deductible this year. That's how much money I DIDN'T cost them).

I have been in a funk ever since.


Foundation Fighting Blindness has been running a campaigh - #HowISeeIt is supposed to drive awareness and raise funds. It's been pretty amazing to see celebs active on social media promoting FFB and driving awareness. It's no ice bucket challenge, but I'm not a fan of being cold, so I'm alright with that.

It's been a bit disheartening to see the backlash against the Foundation and against the campaign.

I read the comments on Facebook (oh, silly girl, never read the comments) and I'm... frustrated. I'm angry.

There are some people who take issue with the #HowISeeItChallenge because they see it as fear mongering, they take issue because they feel it implies there's something wrong with being blind - as though that makes them "less than." The criticism of the Foundation has been harsh and it's been confusing to me because since my diagnosis, I have found the FFB to be tremendously supportive, helpful and committed to their cause.

Look: It says it in their name - Foundation FIGHTING Blindness.

It is their mission to end vision loss caused by retinal disease. To expect their mission focus to be anything less than trying to eradicate disease is ridiculous - as it's WHAT THEY DO.

No, it doesn't mean you're less than or inferior if you're blind.


(Let me say that again)

Some of us are TERRIFIED of losing our vision. Some of us DON'T WANT to lose any more sight. And some of us are going to fight like hell to support the people who are trying to find treatments and cures.

Why this came as a shock to me, I'm not sure. The same sort of culture is prevalent in the hearing impaired communities as well. But I've never had deaf pride. I've always hated not being able to hear well.

And you better believe that I will fight this vision loss as strongly as I can.


Fall is here and it's getting darker earlier and the sun is taking longer to rise in the morning. I love fall - the end of sweating every time I step outside. The darkness is already getting to me, though.

I may never regain what I've already lost but I don't want to lose anymore. Every time I start thinking I'm doing okay, I hit a patch of not-okay-ness. At 30, I had no idea any of this was coming and I'm staring down the barrel of 40, all too aware of how much has changed for me.

It's a tough pill to swallow, and I'm just not ready to accept it yet.

I'm not going to allow others to make me feel guilty for not accepting it. And that's how I see it.

spring forward

Lose an hour, gain an hour - I've always thought the act of sending the clock forward and then back during the year was a tedious one. While I'm sure there's a reason, my argumentative (and inconvenienced) side would say that the reason isn't a good one, and we're not farmers, so is there any REAL need or me to lose an hour of sleep?

And yet I am so excited that next Sunday I will lose an hour and we will "spring forward" and I'm so tired of darkness that to have more daylight will be good for my mood and good for my soul.

Winter is freaking hard.

It's been a mild winter, at that. As far as Michigan winters go, it could have been worse - and I'm fully aware that we've had winters that have damn near brought me to my knees with the constant snow fall and subzero temperatures. This winter, I praise El Nino and acknowledge climate change, and still send my internal gratitude for a winter that didn't have me on Travelocity seeking plane tickets anywhere and everywhere warmer.

It hasn't been brutally snowy or painfully cold - but it's been dark.

When your sense of night vision is diminishing, it becomes painfully apparent how dark winter is.

These days, it's light before I leave my house and daylight lingers after I get home. I am looking forward to days that stretch into night.


"Who are you going to see?" my primary doctor asked. I was telling her about my upcoming trip to the University of Iowa to see a doctor for my yearly appointment - really, it's only my second.

When I told her the doctor's name, she said, "Ohhhh, you're going to see THE guy."


Usher Syndrome is rare, and so yes, I want to see the doctor who knows his stuff more than anyone. Also? I want to see the doctor who will treat me with kindness. My appointment last April is still etched in my head - a doctor who spoke to his medical students instead of to me, seemingly oblivious to the tears running down my face. Who is the one with vision problems here?

It left such a bad taste in my mouth, the way I felt when I left that day. I know, you can't really put a nice spin on a rotten diagnosis - but you can treat me like I'm human.

I'm both dreading and looking forward to Iowa. I don't anticipate good news - and since I'm not, I hope the bad is draped with kindness.


"If you're going through hell, keep going."
- Winston Churchill


The forecast for the week includes temperatures near 60 degrees, a remarkable March thaw. Muddy dog paws will mar the carpet, but the snow will be gone. Oh, how I can't wait for spring.


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.