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.

Ushering In New Goals

 9.3 miles later. I DID IT! (Image description: Me crossing the finish line at the end of a 15k race in Chicago)

9.3 miles later. I DID IT! (Image description: Me crossing the finish line at the end of a 15k race in Chicago)

Last year, as I approached my 39th birthday I already started thinking ahead. I had one year left of my youth, I thought to myself - time to make some plans. The result of my fear of aging was to create a list, 39 things I hoped to accomplish before I turned 40.

The list itself was a potpourri of things - I wanted to make it through the winter without cutting my hair out of boredom (it sounds silly, but every year come February - chop chop!), buy something frivolous, try a new restaurant each month. I didn't do everything on my list, or even most of them, but one of those items I started tackling right away. I said I would complete the Couch to 5K training program for running, and ultimately, I wanted to run a 5k race.

I'd done the training program years ago, and I had even gotten pretty fast but it'd been years since I had run and when I got started, I could barely get through the required two minutes of running before breaking into a relieved sigh when it was time to walk again. A year ago at this time, running a mile without stopping seemed a pretty hefty goal.

Well, I did it.

And I kept going. This summer I did a 10K race in Chicago and when I was done, I felt so amazing, like I truly DID SOMETHING BIG that I decided I wouldn't stop there. I kept running, kept training.

Last weekend, I completed a 15k race. For those (like me) that aren't sure of the miles to kilometer conversion, 15K is about 9.3 miles. Let that soak in a bit - because I know that I have trouble believing it myself. I ran 9.3 miles. Without stopping. I did it.

But it was really hard.

Whereas my 10K featured a lovely lakefront path that was smooth sailing, the 15K route took runners under the streets of Chicago through dimly lit tunnels. It was terrifying, running in the dark, and added a layer of emotional tension to the sheer emotion of running further than I ever had.

For most of those 9.3 miles, I was very aware of Usher Syndrome and I hated it.

It was a huge race, tens of thousands of runners. Our corral started and it is immediate jockeying to find your place and your pace, getting around people who move slowly and finding that spot where you can comfortably run.

I knew it would be a struggle for me, so I decided to just follow some all around good life advice: stay in your lane. Though there were no "lanes" so to speak, I figured I would be best off to not try to move around too much and instead just put one foot in front of the other and keep on moving forward.

Unfortunately this didn't work.

I feel like this could easily be a post griping about other runners, but I don't want to do that but I guess I'll take a moment to chat running etiquette which I'm largely making up because, y'know, I've only done two races.

If you're gonna walk, move over to the side. Okay, I know I"m not making this rule up because the announcer must have said this 495 times as we waited for the race start time. But it doesn't matter how many times he said it because a large percentage of participants ignored him, choosing instead to just stop and walk wherever, whether they were on the side or in the middle of the course, making it necessary to leapfrog around them.

Why you gotta wear all black? Etiquette? Maybe not. But it's harder to see a runner wearing all black when you're running through a dark tunnel underground. I'm just sayin'.

During those first two miles, I'm sure that I bumped into (and annoyed) a great many runners because it was hard to see them in the darkness. (The dude wearing the Pikachu costume, however? I never ran into him. Kudos on the costume, man. You were very visible.)

--

It was tough and emotionally exhausting but I made it through because I can do tough things - which is what accomplishing this goal taught me. I even want to strive bigger. I have my eyes on a half marathon this spring.

My next hurdle, though? How the heck am I going to train this winter? It's too dark in the morning. It's too dark when I get home from work. I'm too clumsy for a treadmill. Running exclusively on the weekend is my best option, but is that going to get me to where I need to be?

I will do this... and yet I am so frustrated at how difficult it is to just DO this thing. The time just changed today and already I'm ready for the moment where the days start getting longer again.

It wouldn't mean as much to me if it were easy to accomplish, but I have gotta admit, I wish it weren't so hard.

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.

It's just that NOT ALL OF US WANT TO LOSE OUR SIGHT.

(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.

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.

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.

Finally.

 

 

 

 

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."

Yes.

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.

 

Fixed.

This morning when I was walking to my car, I slammed my leg into a night stand that I'd recently acquired when my grandmother moved into a new care facility. In the dim garage, I didn't see it and I am not yet familiar enough with it being there to navigate around it instinctively. There's probably a bruise there now. And that's how I started my day.

It's cold again - and this has been a weird winter for weather. It's warmer than it's been past winters, but because it's been unseasonably warm, I don't know what to do with myself when it actually behaves like winter. Gray and flurries and the threat of slick roads.

I worked through lunch. At some point in my day I felt a lot like crying and resisted the urge.

I'm so tired so much of the time. It's a life season thing, I think. And a "UGH WINTER" season thing. Somedays are better than others but there's a dull ache in my left quadriceps that is a reminder today.

-

When I requested clothes for my last StitchFix, I knew my stuff would be arriving right before Christmas. I knew it was the tail end of 2015 and I knew that I wanted to end the year feeling GOOD, feeling pretty, and being excited. When I requested my Fix, I told my stylist about the kind of year 2015 had been (not good) and about my diagnosis (stupid retinas) and that I wanted happy clothes to feel happy about.

My next Fix had a bunch of great clothes. I kept every piece.

I was happy about that.

I came home today to a thick envelope from StitchFix, and in it, a hand written note and a gift card for a local salon and spa - and my heart, oh my heart just cannot believe that they took the time to do this and oh what a difference it makes and how special I feel.

(Part of me - the woman with a nearly two decades long -- oof i'm old -- career in Marketing knows that this kind of gesture is the kind of thing we're always encouraging clients to do: WHY? BECAUSE MAKING SOMEONE FEEL SPECIAL MATTERS.)

I feel like they listened to me. They heard me. They took the time to uplift me.

"Your stylist passed along the news of your recent diagnosis and overall tough year and we wanted to let you know that we are thinking of you. We are so inspired by all tha tyou do and the hard work it takes to care for your family. You are amazing!"

I... still can't believe it. I've read the note so many times and every time I think of someone taking the time to write it and how amazing it is that they reached out to brighten my day.

I'm scared of so much in life. There's so much unknown.

And I try SO HARD every day to not let fear win. Not every day is bad, not every moment is bad - but winter is especially difficult because darkness - so much darkness.

And today, I am tired. There's an ache in my leg. I'm scared. But this unexpected act of generosity has brought a smile to my face and that I can forget for a little while some of the not great stuff.

 

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.

The universe is making it hard for me to find my gratitude this year and that stinks.

I'm cranky. I've just swept and mopped my kitchen, laundry room and mudroom and the artificial scent of lemon hangs in the air. To my right is the television remote and since my house is empty and quiet, I'm thinking of choosing a movie to watch - preferably something with a lot of swearing, something I wouldn't watch while my kids are home. 

It's thanksgiving and I'm alone...for now. The family gathering is several hours away and my girls are, for the first time in awhile, with their dad who has been gone for work.

I went for a walk. I've cleaned. Eventually, I'll make a homemade whipped cream to top the cheesecake with gingersnap crust. 

Right now, though? It's lonely. It's too quiet. While it's a bit of a nice break to not be "on" - to not have to be anything to anyone for these few hours - it's tough. Facebook is filled with pictures of family and being alone seems a bit... Well, like the universe is being a giant butt head.

 

And I'm already mad at the universe. I don't know what to feel and how to find my gratitude at the tail end of this year - this year that has felt impossible, this year I learned my retinas are stupid and will only get stupider as time and years go by.

 

Time has helped a bit - I don't cry nearly as much as I did a few months ago - but to be fair, who even has time these days to think? Even when I'm awake and battling insomnia at 3 a.m., it's not often my eyes stressing me out. I'd call that progress but I'm still not getting enough sleep.

 

I know there's so much good in my life. And I'm thankful. I am. 

But it's hard. And today is one of those days where it feels tougher than usual. Maybe it's the whole idea that I'm supposed to be so freaking grateful. Maybe it's the unwanted solitude. Either way... Sigh.   

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?

Because I've tripped over stuff all over the country

 

In the Opryland Hotel in Nashville, I walked right into a huge concrete bench. Bashed my shin pretty good. It was a joke for the rest of the week, how that non-moving bench jumped in front of me. 

In Dallas, I tripped over an orange traffic cone while doing a walkathon for some children's charitable organization that I don't remember the name of. Ha ha. So funny. Clumsy Sarah.

I walked into a low hanging tree branch during the Avon Walk for Cancer in Chicago. I thought I had more clearance than I did. Minor scalp wound. No harm, just embarrassment.

I've fallen over an ottoman in the library, right in front of the New Books section. Another ottoman in a local hotel where I was walking through their lobby on my lunch break to get exercise - fortunately no one saw me fall, and I quickly glanced around trying to figure out where the cameras might be that someone in the security department might be watching me and laughing at me from a control room somewhere.

"You don't have cankles, but you have a cankle," Chris said.

I missed a step walking out of a restaurant last night, twisted my ankle. Open door, huge step down. I'm pretty sure there was no sign.

Today, ibuprofen is my friend and it's still not entirely working. I've used a cold soda can as an ice pack. I prodded the skin, poking at the swelling and comparing my fat left ankle to my bony right ankle. 

My clumsiness was often the butt of jokes - the orange cones, that bench in Nashville - I trip over my feet, that thing jumped in front of me.

Knowing now that there's probably a reason - well, I don't know if that's better or worse. Is it better to know that I'm probably not really a klutz? I thought it would be, but if that were the case, I feel I could laugh it off.

I can't really laugh it off anymore.

Everything I've ever read about RP, people have said that they grow used to the bruises - to bumping their head on cabinet doors, to running into things - but in the aftermath of falling out of the door of that restaurant last night, all I felt was sadness.

Sadness that this has been there far longer than I've realized. That the times I thought I was just ungraceful, klutzy, the kind of girl who can't walk and chew gum at the same time.

Knowing that it's probably been the RP all along isn't the reassurance you'd think it'd be.

My ankle is swollen. It hurts. 

As I caught myself when I fell last night, I walked away feeling mortified. Devastated. And I know this probably won't be the last time. 

I guess I'm not a klutz. Wish that didn't make me so sad. 

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...

 

Retinas.

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.

Usher.

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?]

I had written a post. Twice. And then I lost it. Twice.

So, instead of telling you something useful, I'll tell you that this weekend I bought a big floppy hat to keep the sun out of my eyes and off my face when I'm outdoors. It's huge and I look like an old woman and yet, the hat is  a little bit glorious.

This afternoon, I got out of my car. With so many bags to take into the house, I put my hat on my head so as not to have to carry it in. A huge gush of wind came, swooped the hat right off my head and it sailed into my neighbor's yard.

I could imagine it, the hat flying down the street and me chasing after it, but fortunately it stopped in my next door neighbor's yard, no chase necessary.

Thank god, because just how far was I really willing to chase a $15 hat from Target anyway? I'm glad I don't have to find out.