Introducing: My Disease

Glau-coma (glaw-comb-uh)

  1. A word you don’t know until it affects you or someone you love.
  2. A disease with symptoms including uncertainty and anxiety about the future.

The thing that I often forget about my condition, and that’s the fact that it’s progressive. It’s not an obvious disease with many symptoms, and it moves slowly so it’s often hard to tell when things are getting worse. That’s why my condition Glaucoma is often called “the thief of sight”. I was reminded of these facts when my at a routine appointment, my doctor began to share concerns with me about my left eye.

The drain in my left eye (which has a fancy name that I can’t remember) stopped being as effective and as a result, fluid was building up in my eye causing damage. So my doctor started to talk about options and all the things we had to consider; my departure to college and my access to health care far away from my eye specialist. When set a details and awaited contact from my doctor’s secretary.

As all of this was happening, I’m reminded of the hardest parts of my disease. It’s not having surgery, although that can be tough and sometimes uncomfortable, I’ve been under anesthesia probably over 30 times. On top of that eye surgery is probably one of the least invasive surgeries you can have. So yeah, surgery is not something I want to do by any means but it doesn’t make me as apprehensive as you might think.

The hardest part is being reminded of the inevitable. After over 20 surgeries and years of a rigorous schedule of medicines, my disease will still be there. My confidence has taken time to build yet, I know that someday there will be another challenge for me to overcome. A new state of being for me to accept. Perhaps the worst part in all that I just mentioned is the “someday”. I have no way of knowing when I’m losing more eyesight, or even if I’ll wake up tomorrow with half the vision I have now.

I’m not writing this as a sob story about the painless slow-moving disease that glaucoma is. I know that I’m incredibly lucky, because I’ve never had to fear that my disease would take my life. However, Glaucoma is still taking something precious from me. The ability to see new parts of the world and even more importantly, the ability to see my loved ones grow and change. I know that many don’t understand what having Glaucoma means, that it can affect all kinds of different people of any age, and that there’s no cure. I’m not a doctor, but I think that if this disease gets more attention, a cure can be found. This is my selfish plug, partly because I would love there to be a well-tested cure so that I can keep the rest of my vision, but also because the world would be a better place with one less chronic illness out there.

Love Yourself

I think of people and their personalities as something that is very abstract. There isn’t a scientific formula for the contents of a personality, and therefore one can never be sure how a person is going to react to a given situation. Some people are highly logical, while others are propelled largely by emotion. No two people are exactly the same, just like our fingerprints. The problem is that what is inside someone, what “makes them tick” is not as easily examined as a fingerprint or DNA, but is often much more compelling.

These facts and more are the reasons that human relationships are often complicated. There will always be work in the therapy field because people will always have problems. One of the ironic things about human behavior is that we often know more information about ourselves the anyone else and yet we often don’t understand the way we feel or why we feel that way. One of the things I have learned about my personality is that I am very empathetic.

I don’t think that I have a psychic superpower, or any kind of power. I’m just attentive to how the people around me feel, even if I don’t know them very well. Sometimes I find this part of myself helpful–it forces to pay attention to how my actions affect other. By the same token it can also be a hinderance. Always gauging how other people feel and taking on what I perceive to be their mood can make it difficult to tell how I am feeling about a situation or to act normally. For example, I often feel extremely agitated if I watch someone who i very nervous giving a presentation even though I am sitting in the audience

So, why am I telling you about my weird quirk? I’m telling you because you have them too! Everyone has different attributes that nobody else has. We spend so much time getting to know other people. Memorizing names and relationships and how others act. Sometimes, though, we don’t take an adequate amount of time being introspective. Maybe we don’t want to see our flaws. The fact is, you’re going to have flaws whether you think about them or not and it is much better to know yourself in terms of identity rather than letting others define your traits. Accepting yourself for all that you are is absolutely essential to staying happy. And think about it; who knows you better than you?

 

 

Picture Perfect

I’ve been through a lot of changes since the last time I posted. Because of recent events, I’ve been made to realizing that we are constantly changing even when we don’t realize it. Sometimes when you’re young a romantic relationship can feel like the biggest, most important thing in your atmosphere. I’ll be the first to admit that I have a long track record of being devastated after a break-up.

To be honest, isn’t that the way we’re trained to be? Media and today’s world of instantaneous updates and highlights of the happiest, most photo-ready moments leaves many people feeling like they are constantly striving to achieve a sort of superficial happiness that they can paste on social media to make everyone think that they’ve got it all. The truth is,no one does. We all have parts of our life that are painful and challenging and messed up because we’re all human. In addition to being beautiful and wonderful life is also inherently messy and crazy and sometimes just plain ugly. With this being true, why is it that young people grow up in a culture that teaches us to fall apart when we lose a romantic partner?

Certainly there’s a very delicate line between accepting a break up and hardening your heart against letting anyone in ever again, and I have found myself dancing that line more often then not in the past month. That being said, it’s amazing wen you change your perspective. When you accept what has happened but move on knowing you have a future ahead of you with or without that person.

There are some of you I’m sure who have never found yourself revolving your life around your partner, and I deeply admire. If this is true then just take this as a small reminder to never forget who you are. Always stay passionate about what you love, don’t pause your life for anyone else. Always work on improving yourself but know that the right person will accept that you are only human and will continue to love you as long as you are trying

. Never let anyone look down on you as if they’ve never made mistakes because I hate to be general, but that just can’t be true. Love yourself and be confident but always remember to stay humble because we are all only blindly struggling through this thing called life without a map or a manual or instructions. God knows we have enough challenges without pushing one another down along the way.

Impressions

My sister called me today and told me I had mail. I told her to open it, and inside she found this. The postcard included said “Your words made an impression on us, so we made an impression of them. A Seattle U you are one of one, and nothing could be greater.”

I realized that while I was glad to be appreciated by the good people of Seattle University Admissions, they were actually incorrect. My words being immortalized on a nice laminated poster is nice, but there is something better.

I read these words and I realized that I actually genuinely believed them. For the first time in my life I’m in a place where I believe that I have a great worth and that I will do incredible things.

I actually have a point here, I’m not just bragging I promise. Everyone has days or moments or periods where they don’t feel good about themselves. But when you only think negatively of yourself that soon becomes your truth. Being consumed with putting yourself down will hurt you and prevent you from making the impact that you have the power to make.

Loving and accepting other begins with accepting yourself. Take in all your flaws, quirks, talents and traits. Every part of you together has the potential to create something beautiful; it just depends upon how you choose to put the pieces together.

Love,

Court

Shedding Some Light

I’m feeling incredibly down today. It’s probably one of the roughest days I’ve had in quite a few weeks.

That being said, I wanted to write about something positive. A man named Kevin came to present at our Orientation Training Center. He works for the Lighthouse for the Blind here in Seattle. He talked to us about their program and although it’s not currently applicable to my life, what they do is truly incredible.

The company makes parts for Boeing aircraft, military equipment, and other items that they machine on really high-tech gear. The part that makes them incredible is that they actively seek out blind and visually impaired employees.

You read that right.

Kevin’s job is literally to travel the country and find skilled people who need work but happen to lack sight. It’s not government paid, and it’s not SSI dollars. It’s the way out of SSI. It’s an opportunity to provide for yourself and/or family. I think it’s also a chance for a bigger change; a chance to change the view that the “sighted world” has of those of us who are blind or visually impaired.

I wasn’t as inspiring as Kevin, not even close. But if you’re blind or VI and you’re looking for opportunity this is definitely something that could change your life in a big way. Even if you’re just thinking about it a little bit, look at their website and see for yourself.

Seattle Lighthouse

Chrysalis.

I’m leaving home tomorrow.

Even though a few months ago I left for the first time, this feels more real and substantial for some reason. Maybe it’s the fact that I’m going alone. Not that I’m flying alone, but that I’m going to really be “on my own” when I get back to my training program in Seattle. This time, no one is coming with me to help, but it’s not a bad thing. Neither I nor my parents have any doubts that I can handle all of this.

To a lot of people, this kind of thing happens naturally and isn’t a big deal. But despite the fact that I’ve always been intelligent, things were just more difficult to learn because I had much less vision than normal in a sight-dependent world.

After graduation, I decided to take a gap year. Even though people do this, I wasn’t excited about it at all. I didn’t want to be any more different than other people than I already am. It turns out, the problem was really my perspective. Living and working with other blind/VI individuals at this program has really opened my eyes. (pun intended.) It hasn’t been easy. Going to this program feels like your disability is being shoved in your face every day, and that’s hard, especially knowing that I am going to lose more vision as I get older. Everyone there has a lot of emotions about their situation, each person has a story, none of us are perfect, and we don’t always get along. The thing about blindness is that it doesn’t discriminate. Rich, poor, tall, short, thick, thin, all kinds are affected by this impairment. To put it simply, the OTC(Orientation Training Center) is a lot of imperfect people trying to make the best life they can for themselves despite the challenges they face. That’s not a mantra or anything, just my personal assessment.

So at first, I was a little disappointed looking at everyone’s college pics, thinking “that should be me”. I got over it though. This year was my chrysalis. I have two acceptance letters + scholarships to great colleges and a ton of possibilities. I love myself and have more confidence than I ever have before. To be honest, it’s a wonderful feeling.

Although I’m surprised and proud when it comes to my metamorphosis, I didn’t write this solely for that reason. School was really hard.I was a caterpillar at one time. From sixth grade to eleventh felt like I was crawling on my belly, trying not to get eaten. In twelfth, amazed that I survived to that point, I started to make my chrysalis. I know I’m not the only person who felt like school was more about survival than having a good time. You don’t know me, and I don’t know you, but if you’re thinking about giving up on yourself don’t do it. Not for me or your S.O. or even your mom but do it because if you give up you will never get to know all the wonderful things you can be.

comingout2

 

 

Under Pressure

To you, just another 80’s lyric, but to those of us who live with glaucoma, living under pressure is a daily reality. It seems crazy to people who don’t live with it, but for me, going to get my pressure checked is just another routine check-up. The only thing is that it’s way more stressful than that.

I have glaucoma. If you know of it already, you’re probabky wondering; isn’t that something that old people get? The answer most of tthe time is yes, but there are a few rare cases where people are born with the disease. Sometimes it’s passed down or historically characteristic for the family, but in my case, my parents simply happened to have the perfect combo of genes to make it happen. Needless to say, glaucoma has kind of always been my life, and the in many ways the life of my family. Though not life-threatening, my disease is sight-threatening and most of my life has been spent fighting it. Luckily, I’ve had a wonderful family support and been incredibly fortunate to have great medical care.  Not everyone is as blessed as I am.

As cared for as I was, I wasn’t diagnosed until age two and by then, a significant amount of damage had been done. I think the scariest part about glaucoma is that there are hardly any symptoms. You don’t feel pain or discomfort hardly ever, even when you eyes are being severely damaged. Glaucoma is one of the leading causes of blindness in the world. There is research looking for a cure, but unfortunately glaucoma is a tough disease to fight and 10% of those who receive care still end up losing their vision.

I feel like glaucoma is one of the lesser known eye conditions, and I know from experience it’s not easy to live with. This month is awareness month and I just kind of felt like this is the best way to spread awareness.

If you want more info or feel able to donate to research, you should visit this website.

Thanks for the read.  ❤

Freed By A (Braille)Cell

I didn’t even know today was significant but it turns out it’s Louis Braille’s birthday. I didn’t expect to, but I got really excited about this. I would write on his wall, but he’s been dead for almost 200 years so I thought I would write this. I’m not going to give you a history report but I’ll just say that Louis was really freaking rad and he accomplished a lot despite being totally blind. He was a composer, musician, and teacher. He also developed the entire braille code which is really amazing because he basically reinvented the wheel of the literary world.

I’m not going to lie, when you first start learning Braille is exceptionally challenging and I think giving up in frustration should probably just be added to the curriculum because everyone does it. Eventually though, it starts to snap into place in your head and you kind of feel like you have some sort of secret wisdom, Although technology is rapidly changing and making life better for those of us who have impaired eyesight, there’s a sort of independence about reading, actually physically reading, that no automated voice can fulfill. To me, Louis did a great service that continues to be useful over 200 years later and I think that’s pretty incredible.

As a side note, you know those yellow strips with dots on the down-slopes of sidewalks? That is braille for feet, warning patrons with vision loss that the sidewalk is ending.

Happy birthday Louis, I’m glad you existed ❤

 

The Un-Resolved & Resolutions

Call me dramatic, but I can’t help it guys. It’s New Year’s Eve and I’m reflecting. As I look back at this year I think about the people I’ve known and the things that I’ve done. I didn’t do anything extremely spectacular, but I just moved through it all. Tried my best to enjoy my senior year and being open about my visual impairment in a way I never had before…in a lots of ways this was my metamorphosis year. So I guess like many people today, I have all sorts of thoughts flooding through my head.

Don’t get me wrong. I’m not making New Year’s resolutions or promising myself that 2016 is going to be “different from all the rest”. We sometimes tell ourselves these things on this day that happen for maybe one week post-holiday. I don’t believe in making life-changes on this day, but I do believe in gaining perspective.

This year, I had people judge me, put me down, do me wrong, you name it. And whether you black, white, purple, gay, straight, blind, deaf or anything else that a living human can be those people are going to be there. Some people are just waiting to tear other people down, and that’s just a fact of this life. But taking it in stride isn’t just about being the bigger person. It’s about becoming stronger and smarter and more ready for life because of what people put you through. You can have a smart comeback, but if they change the way you feel about who you are then they win.

I’m not making a resolution for myself. I guess I’m just looking back and making a mental note to be thankful for all the people in my life, whether they were the ones who cared the most and supported me or the ones who wanted to watch me fall. Maybe I didn’t speak up at the time, or stand up for myself the way I should have. What I know for certain is that all of the things in my life, especially those that were difficult, made me into who I am.

So, raise your glass to the good, the bad, and the ugly of 2015. Remember, reflect, and keep proving that you’re stronger than all that wants to pull you down.

 

Eyes Wide Open

A room covered in boxes, wrappings, and bows accompanied by piles of just-opened gifts. The remains of a hearty dinner filling tummies and like a lullaby, pulling families into naps after all the anticipation and excitement. The thing I forgot about the most wonderful time of the year is that it is also the prime time for sickness. As I’m being reminded of this fact with a sore throat and the feeling of my body giving a definitive feeling of UGH, I try to think of the last time I felt this terrible. 

I don’t get sick often, but I have some memories of periods where I became part of the couch living on crackers and Gatorade. 

Surprisingly, these aren’t what comes to my mind first. I realized that the feeling that comes to my mind first has nothing to do with a bacterium or virus. Honestly, it’s much more crippling. 

The worst thing I have ever felt in my life is feeling like I was less of a person because of my physical disability. 

It’s hard to think about, hard to even write that sentence. I mean, why should I feel bad about something that I have absolutely no control over?

It seems ludicrous but I felt this way, and not just for a little while. I’m talking years of my life. I couldn’t make friends in middle and high school, at least not real ones. I ended up hanging out with any crowd that would accept me, and even there I was an outcast. 

I’m not the only one. Over the years I’ve made friends who deal with the same things I do and the story is often similar.  

So now, years later, I’ve finally realized the truth. I’ve realized that I actually have incredible value just like all of my legally/totally blind friends. But why did it take me so long to figure that out? 

Because when I was growing up there were no commercials and models and general media showing blind individuals as we truly are. 

People. 

Not an anomaly, not “wow that’s incredible they can do x,y,z considering they’re blind”. 

I wasn’t exposed to this and neither were my peers,or the peers of my friends. As a result impairments become like that curse word that even those who swear a lot refuse to say. 

 This isn’t just the case for visual impairment. Across the board physical impairments are displayed as an oddity. An oddity in itself considering that in one car accident, anyone could become a part of our underrepresented group. 

I say all of this not to be bitter but to be honest. I would never want someone to go through the isolation that I experienced during school. No one should have to because after all, this is the Information Age. Media does so much to negatively affect younger kids, giving them misconceptions about how they should look or act. Why not make it into something positive? Teach them that physical impairments happen and that those who deal with them are getting through life just the same as everyone else. We can help people to see, we just have to open their eyes.