Owning the Equinox...again.

I am in a different place this year than last - in some ways, that's a good thing and in some ways, it's a less than great thing. This year I am less scared about my eyes. Good. This year, I am more likely to get wrapped up with anxious thoughts about ridiculous things that a) don't really matter much and b) never really come to fruition anyway.

My theory is - because of course I have a theory - that I worried about my eyes so much last year that all of that fear and nervous energy had to go somewhere.


(SO NOT YAY. It sucks. It's not good. I'm working on it.)

But my point is:

Usher Syndrome rocked my world and not in a good way, like when you go out to eat and find out you showed up on $2.50 margarita night.

Even just the news of it, the possibility of the diagnosis and then the diagnosis itself, made such an impact in my world. I had never heard of Usher Syndrome before and suddenly it was this black cloud hanging over my entire life. That's...kind of big.

It's funny - I went to college originally planning to be a biomedical engineer. I wanted to do work that would make a difference to people, I wanted to cure stuff. I wanted to make my mark.

(And then I realized that I would make a rotten engineer, transferred to the b-school and hellllllooooo career in marketing.)

Maybe I won't be inventing cures - but I'm now counting on the people that do.

What I can do is tell you about Usher Syndrome. What I can do is raise awareness of the disease. What I can do is try to encourage people to support organizations like Foundation Fighting Blindness or the Usher Coalition,

September 17 will be the second annual Usher Syndrome Awareness day. As we lead up to the big day, there's a campaign running - and each day, until September 17, I'll walk or run at least a mile to raise awareness and to OWN THE EQUINOX.

Because... there are only two things I can do: raise awareness and try to make my life as good as I can.

This is me doing the awareness part.

As for the other... I'm working on it. I have a ways to go, I know. I'm trying to funnel that energy into better means - I've even started running this year (so far, I'm still a ball of stressy energy, so, I'll keep working). But, my job is to live my life as best I can and sometimes, well, I can do better.

Join me. Walk a mile or two. Read the stories on the Usher Coalition blog. Donate if you can. And when you see me getting a little bit nervous about stuff - because I do - remind me to breathe. Or hand me a $2.50 margarita.

That time I lost a year

I think I spent most of last year in a fog. It goes beyond the fact that the older I get the faster time moves (time being a cruel beast who has me hurtling towards 40 at breakneck pace). Most of 2015, and the early part of 2016, was spent in a the kind of thick pea soup fog that makes you feel like you're walking through pudding.

I cried more days than I didn't.

I was angry more days than I wasn't.

I felt scared more days than not.

In short, it was easily the absolute worst year of my life.

That's a hard bit of information, I'm sure, to the people who love me, who strive to make my life special and wonderful and meaningful. People have a tendency to take it personally - the unhappiness rooted in the startling news of a scary diagnosis and the havoc it wreaks on your state of well being.

Because sometimes there are no right things to say. You can't smooth a jagged edge, you can't unravel the tangles of the thoughts of someone who is in the midst of muddling their way through figuring out what a new normal could look like.

The shock of receiving the diagnosis of Usher syndrome was compounded by the way it was delivered: without compassion, without hope, and, worst of all - without eye contact. 

No longer able to envision my future, with every doctor's appointment, I was sure that would be the day they'd pull the plug on my independence: no more driving, progression too great, vision too far gone. The anxiety some people feel about the dentist, I would feel about the eye doctor, much to his dismay. 

"This is better than the dentist," he would say.

"My dentist is actually pretty awesome," I replied.

I couldn't envision my life a year down the road, and certainly not five to ten years in the distance. What could be left? Surely nothing.

[This is where I'll leave out all the grim thoughts one has when they tell you that you will lose both your vision and your hearing because it is a HUGE bummer and no one wants to read that.]

And so.

I was told by several people to visit the University of Iowa, to see Dr. Stone there. I heard a lot of really amazing things about Dr. Stone, but the most important thing was that he was positive, that he might give me some hope. Well, hope is certainly worth a road trip.

In April we went, stopping along the way to visit a dear friend who filled us with love and carnitas before the first of two appointments.


From the beginning, my experience at University of Iowa was different and in the best possible way. I began with a field vision test - oh, how I hate those - and the stress of the test was overwhelming. I didn't want to fail, I didn't want them to say, "You can't see, you can't drive, you are so much worse than you were last year."

The technician paused the test. Told me to just do my best. Assured me I couldn't "fail." She got up and walked around the machine and stood next to me, gently patted my arm, was encouraging.

Oh. I am a person. I could feel it in the way she treated me.

I received the results from another doctor who not only assured me I still had a very wide field of vision and he was not at all concerned about me driving, he provided me practical tips for how to best function in lower light situations, where my test indicated I had the greatest difficulty. How to navigate dim spaces, crowded spaces.

Oh. This is empowering. This allows me to feel safer in places where I can't see as well. I am a person. I could feel it by the way he treated me.


We celebrated that night with dinner from a local restaurant, a plate piled high with onion rings and I can't even remember what else. One hurdle down, but I still had the next day ahead of me.


I met Dr. Stone the next morning. I expected a day full of tests and awfulness, but my appointment was quite short. He assured me the loss would be slow. He assured me that there is an army of people researching cures and treatments. He assured me that it was his job to know what the latest developments are so that he could let me know what I needed to know.

"Your job," he told me, "is to live your life. Put your worries in a box and leave them in this office, and we'll come back and look at them next year."

I think I floated out of the office.

It wasn't at all what I expected. I was so prepared for the worst - for a year, I was prepared for the worst, and what I got instead was: Keep on keeping on because this ain't over yet. This is a monkey wrench, but you're still exactly who you were. You will still be who you are tomorrow.


That was over two months ago. If I think about it too hard, amidst the relief is a bit of anger over the year I lost while I drowned in fear. I feared so much would be ripped from me - my ability to drive, to keep a job, my independence. And... well, someday it still might be. But not today. And not tomorrow. Probably not next week or next month. I am finally feeling like: I have time.

I'm not entirely sure what to do with myself now. I mean, I've got this life in front of me and I better go live it. For so long, I couldn't envision what much future held - and to be honest, I still can't, but at least there's a bit of hope hanging out there.


On the back of my right arm, just below my tricep is a scar. Often, I touch my arm, feeling the smooth small knot of scar tissue. I find myself doing it often, touching the scar.

It's odd, I know, and it's funny to imagine that just over two months ago, it was a bleeding, oozing puncture wound in my arm. I didn't feel it when the nurse punctured my arm to take the sample for testing. Days later, though, it ached and, well, it wasn't pretty.

That sample is probably in a research lab somewhere. Smarter people than me are working to make retinal cells out of stem cells. Like some day, that chunk that was taken out of my arm can be used to make cells that might help me or people like me. Not that exact chunk, I'm sure. That chunk may or may not already be hanging out in a biohazard waste bin.

When I think of it, though, I can allow myself to feel hope. That there's something bigger going on. That small sample could some day be something very big and that... that's something to me. That's huge.

It's something to feel hopeful about.






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.


Every once in awhile I feel like I could potentially be a bit more positive and uplifting than I really feel

Today is the last Tuesday of 2015. Tomorrow will be the last Wednesday. This week contains the last days during 2015 that I will go to work and when I walk out the door at the end of my work week, that will be the last time I'll walk out the doors until next year. Always seemed fun to say, back when we were in school: "See you next year!" as if next year was a substantial amount of time away instead of mere days.

Tonight, I was looking at a link someone shared of beautiful underrated places to travel. I kept thinking to myself, "I want to go there...." I think to myself, maybe in this year ahead, maybe this could be the year I go somewhere big.

(And then I mentally catalog all of the other things that I will need to spend money on before I spend money traveling to far off places and then I wonder what the odds are of winning a lottery one doesn't play and then I think, "Well maybe I really don't need to go to Andalusia anyway... Maybe I should just be content with what I have.")

Some days, being content is actually pretty easy.

I wouldn't have thought so, earlier this year, that I would ever have days where I didn't cry, that I wasn't constantly gripped with some sense of feeling sorry for myself - but here we are at the end of the year, and I'm pretty sure I haven't cried today. Probably not yesterday either. I make no promises about tomorrow - but who can promise tomorrow, anyway?

I think a lot about luck and the lack of.

About time and the passing of.

About fear and the abundance of.

Some days, if I'm not careful, the mind weighs down and I can feel so scared about what I don't know. I don't like those days.

Yesterday, I saw an article about a study where scientists created retinal cells that worked in rhesus monkeys and I hesitate to feel optimistic because a) I'm not a monkey and b) even if it does work, human trials are probably well down the road.

I think about how there's a presidential election coming up in the next year and people are so focused on their righteousness and sound bites that there are big big issues that aren't getting any air time at all - like medical research. I think of how many people who get so bogged down on what the news tells them matters most, that they don't think of the implication of what happens if someone is elected who doesn't see the hope in science. Progress could be stalled and that stalls hope for me. People like me. And people who are dealing with far worse things than me. People who need science and hope and progress.

And when I think of that, well, I get a bit angry.

Just so you know, anger feels better than fear.

(But both feel a bit powerless, if you really wanna know.)


I really didn't expect any of this when I rang in the new year nearly twelve months ago. I feel cheated out of the year I envisioned for myself - a year that was still full of good things but marred by this dark cloud.

I overheard something a few weeks ago about choosing to feel joy, and the truth is, I don't choose joy as often as I should these days and that's probably something I'm gonna have to work on next year. Perhaps scientists can manufacture some of THAT with stem cells.

I really am trying.

It doesn't always look like it.

It doesn't always feel like it.

But I am. I am trying every day to keep on putting one foot in front of the other and to not let myself get bogged down with a diagnosis that changes my life, yes, but does not end it.

And so it goes.

Owning the Equinox and finding a family

On September 19, the very first Usher Syndrome Awareness Day takes place. I mean, what are the odds, really - my genetic test recently confirmed the diagnosis (that is another post for another day because, well, it just is) and so when I need it most, suddenly there's a huge push to raise awareness of Usher Syndrome.

And along with that drive to raise awareness is the opportunity through social media to find so many other people who know exactly what I'm going through - because they or their children or someone they care about is experiencing all of these things. Strength in numbers isn't just a cliche, but a reality, really.

I cannot imagine how anyone dealt with any diagnosis of a great magnitude before the internet existed. Sure, there were probably support groups - but what about for something so rare? How did they find someone with that same rare thing when there wasn't wifi and mouse clicks and search engines to simplify the process?

I've been grateful to find people who know what I'm feeling. The UshFamily is growing, unfortunately - but it's also a blessing for people like me.

Today, was a hard day - not all days are hard, but today was. Today, I started thinking about what the progression of my vision loss might be. One doctor told me that I'd probably be blind in twenty years… and I keep coming back to that on the bad days: here I am slogging through life, busting my butt day in and day out to provide for my daughters and when I am about to hit sixty, when I am about to prepare for retiring, my so-called golden years… then I can be blind? Well. That sucks. It does. 

I need that to not happen. I need that to not be my reality. I need there to be research and cures and solutions. 

And the first step is awareness. 

Each day leading up to September 19, I'm walking (at least) a mile a day to raise awareness for Usher Syndrome, finishing up that 26.2 mile-a-thon with 1.2 on the 19th. And I'm joining people all over the globe in raising awareness mile by mile, or letter by letter, or day by day, to fight Usher Syndrome.


Join me in raising awareness. 

Make a donation.

Tell your politician type people that medical research IS IMPORTANT TO YOU, and challenge them to talk about it (as we approach the never-ending election year, this is gonna be huge for me - and I'm so afraid that this very important topic is going to get buried among so many other things - but it's crucial, y'all). 

And then? Go to Twitter and check out the #USHEQX tag and read their stories. Find their hope. Find some hope for me. Help make a difference.

This is a new road for me, and it feels like every other road in Michigan: full of potholes. Let's drive change, huh?

And this is why research is important.

A family friend recently shared this with me, and I was pretty much blown away by the type of research that's going on.

Please support the folks who are doing the work.

I've set up a fundraising page over on FFB - they're an amazing organization run by people who have blown me away with kindness - with the heart to sit on the phone with me and talk to me about the questions I have and the fear I've been feeling.

To support research, you can donate here.

Eye thank you. 

And suddenly my vocabulary is different.

It's been five weeks since I met with the team of eye peeps at Kellogg and about four months since my eye doctor first told me she spotted pigment changes in my retinas. A lot has changed in those four months - namely, the amount of time I spend thinking about (and fretting about) my eyes.

If I'm being perfectly honest, I don't think I gave my retinas a single fleeting thought before - and the only time it might have even crossed my mind was in terms of the Retina Display on my iPhone 6 (thanks, Apple). 

Before January, I don't even think I knew what my retinas did, let alone devoted hours of my waking time being upset that mine don't work.

My brainspace has changed a lot. So has my vocabulary. Now my vocabulary is full of...



Your retinas are light sensitive tissue lining the back of your eye. Light rays are focused onto the retina through our cornea, pupil and lens. The retina converts the light rays into impulses that travel through the optic nerve to our brain, where they're interpreted as the images we see. Fun fact: if you mix up the letters of retina you'll spell retain - I only know that because I've typed retain four times in the last paragraph.

Visual Acuity.

This is the eye test we are all probably familiar with - where you need to identify letters or symbols from a fixed distance. I feel pretty lucky here - this is the one part of the eye exam I feel like I can still kick butt in.

Visual Field.

This test stresses me out. It doesn't hurt at all, but it reminds me much of the hearing tests that I should be having far more frequently. It's a test to see how much you're seeing in the periphery... so it's a series of flashes of light in different points of your vision, and you click a button when you see a flash. 

Electroretinography (ERG).

If you read the description of an ERG test, you might get a bit weirded out because, hello? An electrode on your cornea? And then, you think to yourself, "Well, I wear contacts, so... it can't be THAT different." 

Let me repeat that: electrodes on your corneas.

Nope, it doesn't at all hurt, but it's a bizarre feeling. Also? The gel-goop they put on the electrode dripped out of my eye, ran down my face, and smeared my makeup so I likely looked like the worst nightmare vision of a clown - WITH ELECTRODES.


Not just the guy who sings that "Yeah!" song that my family likes to dance to at weddings. Who knew. 

Autosomal Recessive Disorder.

We may all remember from basic biology class that we receive genes from both of our parents. This whole thing has made me wish that I had paid closer attention in biology class.

In the case of an autosomal recessive disorder, it means that I received a copy of the abnormal gene from each of my parents. Neither of them have RP, but both were Carriers of the abnormal gene. There was a 25% chance I'd receive two normal genes and a 50% chance I would receive one normal and one abnormal. Annnnnnd, lucky me, the 25% chance of getting the two abnormal ones (gosh, no wonder I hate Vegas - in the genetic crapshoot, my luck? Not so hot).

You can't control what genes you pass on. You want your kids only to get the super great things about yourself but sometimes... that doesn't happen. For example, I had hoped my daughters would get my naturally curly hair - no go. However, one of them has my nose and one of them has my not-so-endearing tendency to get brutally grouchy when she's hungry. Luck of the draw. Not always good luck.

Retinitis Pigmentosa.

I had never ever heard of this before this year. And that's probably true for a lot of people. Partly because it's not that common and partly because no one has done an ice bucket challenge for it that's gone viral and raised a ton of cash.

I've linked to the definition of RP before, so I won't again - but what I will say is that if I have to have this stupid thing, I'm going to work to make sure that it's part of the vocabulary for more people. Why? Because awareness brings change. Also? Because I'm going to complain about my retinas, and these tests, and wearing floppy hats, and having trouble seeing at night, and my fears, and...... [What? Like you expected anything different?]