Comfortably Uncomfortable

I stopped writing. I stopped blogging. Edging into blindness filled me with a sadness I pretended to smile through, and a rage I pretended not to have. When you are struggling with a serious, life-altering situation/issue nearly everyone wants you to be "ok" and to tell them you're "ok". In the 8 years since I was diagnosed exactly 3 people have asked me how I feel about it. My father, my brilliant cousin Amy, and my ever-amazing and supportive girlfriend (whom I affectingly refer to as Ninja - because she truly is.).

Diseases make people uncomfortable. It makes them even more uncomfortable if you're uncomfortable. Thus, everyone is in a hurry for you to be comfortable with your discomfort, so they can go back to being comfortable.

Be it degenerative like mine, or cancerous like my courageous little cousin James, or some other horror; people often struggle to know what to say. They are uncomfortable being reminded of their own mortality, and even more uncomfortable with the mortality of someone that they care about and love. It's an interesting dichotomy. They wish to comfort you, and themselves, without really discussing the matter at hand and making themselves uncomfortable. This usually results in a great amount of discomfort, avoiding said uncomfortable topic. After all, it is so much better to be comfortably uncomfortable with your own discomfort, then uncomfortably uncomfortable outright (*Sarcasm*).

For me, and my inherit weakness at acknowledging my own unhappiness or anger (until it gets to a point where it overwhelms me and crashes down everywhere) creates this need (or perhaps bad habit) to pretend I'm fine, I'm great, both to myself and to others. Pretend I don't mind going blind. It could be worse. At least I have people who love me. At least I have technology to help me. At least I have Uber to drive me. It's fine. I'm fine. Everything is Fine. Said me 1,000 times over. And it's bullshit. Total and utter bullshit. I am not fine. I am not okay. I appreciate the love, the support, the technology, and the help. But we live in a sighted world. And I am, somehow, expected to make my peace with the fact that one day I will most likely live in complete darkness, use a cane, and have an assistance dog. Never witness another sunset. Never see the smile on loved ones face. Never watch my beloved ocean crash and roll over itself. No, I am not fine with that. I am not at all. And, more to the point why should I be? 

 Why does it seem more acceptable to sell discomfort to ourselves as something we should be comfortable with, than acknowledge it exists and that we are not in fact comfortable with it..(yet?). To be fair, I would like to be comfortable with it. I would also like for it to be okay that I'm not comfortable with it. If I could find that space.. somewhere between comfortable and uncomfortable, fine and not-so-fine, that would be fine by me. I think perhaps there I may find serenity.

So this is me not trying to convince myself I'm fine with my MD/RCD. This is me having good days when I am able to live with it, and even forget about the giant clock screaming bloody murder in the back of my mind; and accept the bad days when I cannot live with it, and cannot accept the giant screaming clock in the back of my mind (on those days the clock is usually right square in the center of my mind).

I have no choice in whether or not I have MD. I have no choice in how it will progress or where it will go. But I can choose what I will do with it. How I will react (a constant work in progress). Somewhere in the space between not-really-ok-with-it and accepting it, I may find peace with my MD and that bitch of a clock I just cannot seem to get along with. Until then I live to see another day.


Happy Trails,
Kristin

Reading Woe's & Price Tag Foe's!

When I was first diagnosed it was this far away, abstract thing- “Macular Degeneration”, “Clinical Blindness”.  I could still see with very minimal impairment to my daily life, none of which was obvious to me or anyone else; and I always said “people beat incurable conditions all the time.”. I hadn't really felt the affects of it, it wasn't real to me, just this thing floating around out "there" somewhere in the far and distant future. Well...6 years later - and it's all a bit too real.  I am 33 years old, and my ability to read is consistently, and persistently, fading.  Even as I sit here typing this, with my font on 14, I can only just barely make out what it is that I am typing, and am forced to lean in disturbingly close to my computer  screen in order to read the words I am attempting to hammer out….

In my family reading is what we do, it is a big part of who we are. It is a huge piece of my self-identity, and I live in a house crammed full of bookshelves teaming  with pages that sometimes seem to taunt me. Books, once friends, whose pages I loved so much, are strangers to me now. It makes me terribly sad, and I wish it didn’t, (I resent this stupid thing (MD) influencing on my emotions, but it is what it is I suppose.).  Rows upon rows of books. Favorites and unopened treasures. All of them just sitting there, staring at me, calling out to me to pick them up and read them once again. Occasionally I pick one up and open it. The scent of the page takes me back to B.M.D. (Before Macular Degeneration) and the smell makes me both smile and clench my teeth in frustration. Sometimes I find it a comfort to have them, knowing that once upon a time I was able to turn their pages and become lost in their magic. Other times it  frustrates me to no end. I occasionally wonder if I should just give them all away, donate them to some charitable cause... But how do you give away a friend you have such love for? I can't seem to do it, so here they stay, and we just spend our time together staring at one another...And while I am unable to read the pages of an actual book, technology has stepped in and saved the day! E-readers, specifically my Kindle PaperWhite is my second most treasured item, and has returned to me my ability to read. It allows me to set both the font and contrast to what suits me best, and it's back-lit screen saves me from having to camp out under two lights in order to read.

Reading is more than just a love, it is a way of life for us all: work documents, restaurant menus, streets signs, social media, instruction handbooks; I could go on and on.Reading is everywhere, it's in everything. And when you can't do it well, what do you do? Well for one thing you get creative! Technology, as I said before, is a lifesaver and that little camera built into my iPhone is my best friend. Snap a picture, zoom in, and viola! And the GPS I can plug into my car speakers so I don't have to worry about reading the street signs to know where I am going? Well, it's my other best friend! LOL But there are still challenges to be met and overcome.

Restaurant menus are a particular sore spot for me. Often small font in a glossy cover in a dimly lit restaurant. Basically, a triple-threat recipe for disaster. If I am lucky enough to be with a companion I love and trust I will push the menu aside, smile at them grandly, and tell them to “fire away” implying that they should read the menu to me, and they do so quite lovingly. This can actually be quit a bonus, as it tends to keep me away from calorically damaging menu items LOL (as there is no more eating "with my eyes" (though my improved sense of smell can pick up a chocolate croissant 5 miles away LOL).  But what if I’m on a date? What then? Sure, I can scope out the menu ahead of time, but what if the location changes? Or the menu is different from the one offered online? What then? I don’t want to sound like the “poor me girl” attempting to draw attraction to herself by drumming up sympathy, but a girls gotta eat! So what then? Well, I handle each situation differently. Sometimes I inform my date that I have poor vision and nicely ask them to tell me what the available vegetarian options are (I tend to avoid this as it often leads to a lot of questions and uncomfortable silences). Other times I excuse myself, go to the bathroom, look up the restaurant at hand on my iPhone, find their menu, take a screen shot picture of the menu, go to my phones picture gallery, open the picture, zoom in on the menu so I can read it, make my selection, and head back to the table. LOL I’ll be honest,  the second scenario happens far more often than the first.

Then there are price tags. Price tags are a  particularly difficult S.O.B.. Small font. Tiny tag. I mean really. How can even an able-visioned person read that crap? I can not even tell you how many emails I have sent to stores, such as Marshall's complaining about the size of the font on the price tag! Utterly ridiculous if you ask me!  And the number of  times I’ve gotten to the register thinking I’ve made some awesome score at one of my favorite stores and discovered that no, in fact, that cute shirt isn’t $9.99 it’s $29.99. #fail. LOL. I mistake the price on items at least once a week. Okay, who am I kidding. Once a day. Yes, a day. No I don't shop that often but prices are everywhere! LOL I have officially become one of those annoying people at the register who asks how much all the neatly priced items cost.

What about the trash magazines in the grocery store checkout line we all peruse? (You know you do, don't lie to yourself LOL.) Yeah, well, I can only look at the pictures next to the story of Kim Kardashian, Kanye, and their ridiculously named child….I suppose my inability to read about it is probably for the best, save the damage to my brain cells by taking in such garbage LOL. 

And yet, even with my challenges, it could be worse. Truth be told, it will likely get worse. So today, and every day, I will be grateful that I able see the picture of Kim Kardashian and her ridiculously named child (Seriously who names their kid a direction?! "North"? I mean really, how absurd!) I will also be grateful for the sunset I viewed Tuesday, the water I watched roll down my window in today's delicious rainstorm, and the tiny flowers blooming all over my backyard. I will be grateful for it all, every last drop. Because that ticking clock is there, ever present in the back of my mind, reminding me to take it all in, as much as I can.I take not one spec of it for granted – and neither should you.

“Everything has beauty, but not everyone sees it.” –Confucius
***Make sure you take time to stop and see the beauty in your life.

Happy Trails,

Kristin

Introdcution

In life, we all struggle to "see" things. For me it is a literal challenge. Several years ago I was diagnosed with visual degenerative disease called  Macular Degeneration, a disease that is actually called AGED-Macular Degeneration because it affects individuals over the age of 65. (http://en.wikipedia.org/wiki/Macular_degeneration) I was diagnosed at 27. Today I am 33. MD is also a hereditary disease. No one in my family has ever had it. Every doctor I have seen mutters what an “anomaly” I am and how it doesn’t make any sense.

When I was 32 they discovered that I also have something called Cone-Rod Dystrophy (http://en.wikipedia.org/wiki/Cone_dystrophy ) which is where, as well as I understand it, the rods and cones in my eyes are dying off, specifically the rods.  I have a hard time distinguishing what’s what in dim light as much as I do in bright light. I need contrast to make sense of what I’m seeing, without it everyone looks the same (this has a strong tendency to create some very awkward moments LOL, because people see me see them but I don’t actually SEE them, but more about that another day). Cone/Rod Dystrophy (CRD) actually does best in dusk-type light, while that’s the absolute worst for Macular Degeneration (MD). MD does best in bright light, which is the absolute worst for my CRD. Fun times in the city, let me tell you.

Some days are better than others. Some days are seriously bad. Some days are just perfectly fine, like nothing’s wrong.  I’m scared (and pissed off) about how I’m going to sustain my freedom and independence; my dreams and the adventurous life I love so much as this progresses. This thing I have, it has changed me, changed the way I think and function and live, for better and for worse. These are my moments, this is is my story.

(***I will try my best to keep the typos to a minimum, but I am the Typo Queen (ask anyone who has ever received and tried to decipher a text message from me LOL), and as this damn thing progresses, reading a computer screen becomes more and more problematic.***)