The Equinox Was Owned - Usher Syndrome Awareness Day 2017

I meant to write earlier. 2017 has been a supreme blur and I meant to tell you all about the things - how I trained for my first half marathon, how I went to Iowa for the second time to see Dr. Stone, how I ran my first half marathon and how I cried when I crossed the finish line. I was going to write about seeing Hamilton in Chicago and how my daughter clasped my hand for the whole first act, just in complete awe that we were in that room where it happens, how tears rolled down my cheek during "Yorktown." How I stopped taking the stairs after I've been out for a walk during my lunch break because my eyes could never adjust to the dark of the stairwell and I kept tripping over stairs. How we went to California this summer and in the dark strange room, smashed my hip into a dresser and it ached for days. How I went to my first Usher Syndrome Conference in Chicago and I actually got the nerve to leave my hotel room and sit down in the audience and absorb it all, even though I was scared.

Some days, I'm still pretty scared.

Saturday, September 16 is Usher Syndrome Awareness Day.

I get scared all the time when I think of what I don't know or trying to anticipate what a future might look like.

But as Dr. Stone said this July in Chicago: We're close enough to walk.

He spoke a lot about hope, and I felt relieved the whole while to know that I have the advantage of having Dr. Stone and the amazing crew at Iowa on my team.

“I mean you can see it. You can walk three miles an hour. So if, if actually they would just  not let the car go anymore, okay, if the FDA showed up and would not let the car go anymore, you could simply get out of the car and walk downtown, and that is actually where we are on the development of cures for Usher Syndrome.”

Without taking this to a totally political place, I'll say that having a disease like Usher Syndrome - a disease with no treatments or cures - is terrifying in the age of this new president. I've been disappointed by a lot of what I've seen so far, and I've feared that the administration would cut essential funding to essential research and slow the progress that's got us so close we could maybe get out of the car... and walk.

We probably can't rely on politicians to do what's right for us (oh, that was a news flash, right?). Fortunately for those of us with Usher Syndrome, there are donors who are generous with their funds who are willing to support progress.. And I am so grateful.

For the past 26 days (y'all... that's a LONG time for an awareness campaign!), so many of us have been doing what we can to raise awareness. And when the Own The Equinox campaign is done, the Usher Challenge goes on. I'm throwing links to both of those in the bottom of this post - both benefit amazing organizations doing different work - for the same group of people just like me.

In the past year, my hearing seems to be essentially the same, as does my vision. I had a horrible experience with a stupid eye doctor this winter when I went to get contact lenses. I had to explain to him what retinitis pigmentosa is. And while I may not have actually uttered the words, "Are you SURE you are a real doctor?!" out loud, I sure was thinking them. And then bless his poor heart when he tried to upsell me with photos of my retinas! Nah, I'm good, man. I've seen 'em. They're broken. For now, anyway. (That janky eye exam is how I will happen to spend a portion of Usher Syndrome Awareness Day actually GETTING AN EYE EXAM - it's not just commitment to the cause, but a need for new contact lenses because I'm pretty sure the dude wrote me the wrong rx months ago, and well, I've been too busy to fix it but now I'm out of contacts and HEY RUN ON SENTENCE HOW ARE YOU?).

Admittedly, not experiencing a significant decline helps my frame of mind. It really is progressing slowly, at least for now, and that's a huge relief.

Research needs to keep moving faster than the loss of my vision. That's pretty much all there is to it. Research just needs to keep being faster.

And that's why these campaigns - as annoying as they may seem to some - are sooooo essential. Because they give Usher Syndrome, and those of us with this disease, a bit of a moment, if you will. Our chance to tell you about it, to ask you to read our stories, and encourage you to be aware of what this disease is. And sure, if you felt so inclined, maybe you could support one of those organizations below.

I'm training for my second half marathon - it takes place in about four weeks. I can do hard things, I can still reach goals. I'm still tough. In two months, I'm taking my mom to Chicago where once again, I plan to sit on the edge of my seat during "Yorktown" and realize yes, how lucky we are to be alive right now. Next year, I won't be in Iowa. Dr. Stone says I can come every two years... and that to me feels like a bit of a reason to breathe a moment and let go of some of the fear.

(I'm trying)

I barely remember my life before my Usher diagnosis and that seems a bit of a shame really. But you can't go back - only forward... so here I am, one foot in front of the other. Probably in running shoes.

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.

Yay?

(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.

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.

So.

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.