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.

Reflections

Life is a state of constant change. Even when we don’t know it, things around us in life are always changing. Circumstances, relationships, moods, if you think about it humans are incredibly temperamental. Simultaneously, we’re also habitual. As a child, we’ll touch a stove twice even though it burned us the first time, and we still do it as adults. We keep toxic people in our lives, we do things that are unhealthy for our bodies, and possibly worst of all, we consistently stay in mindsets that hold us back from being happy. These kinds of behaviors can be really difficult to change because sometimes we don’t realize that we can be our own worst enemy.

I have been treated poorly by people in my life, but two years ago I experienced the worst treatment I have ever known. The perpetrator was the person I know better than anyone, the person should be able to trust the most.

It was me.

Of all the times “friends” have walked all over me,the times partners mistreated me, and the times strangers have been incredibly rude to me, none of it compares to the way I treated myself during my depression. I wanted others to accept me for my disability and who I was, but I was more harsh and ignorant toward myself than any of my peers. Not to say that their words didn’t hurt and have impact. If I had one kind person in my life during those times, I may have never gotten to the dark place that I found myself in. The funny thing is that I could have, and should have, been that person for myself. Instead I dissected all of my mistakes and punished myself every day, mostly for things that i had absolutely no control over. I know I’m not the only person with a medical condition who has done this. I’ve found that the best decision I ever made was to realize that I’m not a mistake. I work hard-sometimes harder than most people- through disability and the depression and anxiety that comes with it and I’m building a future for myself. I used to be ashamed to have a visual impairment. Now, I’m proud to be exactly who I am, and I love the way it feels.

In my head, I have this kind of reverse mirror of Erised. I look into it and see all the things I used to be, and I compare it to who I have become. Stay humble, but don’t forget to give yourself credit for the changes you have made. Treat yourself the way you want others to treat you and never accept less respect than you give. Above all, respect yourself because how you carry yourself sets a precedent for how others will treat you.

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Invasion 

To all of my fellow species, I commend each and every one of you. We have achieved something I believed would never be possible. We have invaded the human-occupied planet known as “Earth”. Many species have tried before us and many will try afterward but I doubt any will reach the level of success we have achieved. We have not only invaded but we have ingrained ourselves into their society. 

By masquerading as members of their own species plagued with “physical impairments” and “medical conditions” we have fooled humans into accepting us into their society and at this time I would like you to metaphorically pat yourself on the back. Hiding in plain sight is finally going to pay off when we take over this planet. We will name this planet Cure after the human term for eradicating illness where, sadly, some of our own will be staying to be closely watched as they contracted human illnesses such as Rudeness, ignorance, and Judgmentalitis.

I would like to thank my mom and dad for sending me, their alien child, on this alien mission. 

Gestures of Affection,

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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

Be(you)tiful

Facebook at times has the tendency to suck us away from our lives and have very negative effects, but I try to keep my feed full of positivity, information, and close friends. Tonight as I was scrolling through I noticed an article about a YouTuber who does mainly. Her name is Jordan, and as I read her story, I realized that she and I have a lot in common.

I’ll be the first to admit I’m a make-p addict. The bag that I keep my lipstick in is bursting at the seams, I have three different kinds of mascara for different occasions, and enough eyeshadow to create a recreation of Starry Night. I feel naked if I go outwithout anything on at all. I do makeup for a few reasons.

  1. It’s fun
  2.  It makes me feel good about how I look
  3. It makes me feel accomplished and independent

It turns out that Jordan is tetroplegic. She can’t move her hands at all, and is confined to a wheelchair because of an accident. She makes her make-up tutorials anyway, and achieves stunning looks even with her hands that many might call useless. Like Jordan,, make-up was a huge frustration for me at first. I have no usable vision in my left eye, and the vision that I do have in my right eye is limited by any standard. Over time and with practice, I began to get better at doing it and I started to love the routine. It was something so simple and yet for me it was a challenge. Despite that fact, my make-up most days was pretty “on-point”, as the kids say these days. My point in this is not that you should start doing your make-up. My point is, don’t let anything stop you from making yourself feel beautiful and fulfilled. I remember my Mom saying something to me once; it went like “You can always regret quitting, but you’ll never regret trying.” At the time I was young, and thick-headed and didn’t listen to her advice as well as I should have. However, now I am older and wiser and I’m telling you this is a golden nugget of Mom advice. When they told you you could be anything you want, they lied. They SHOULD have said you can be anything you work hard enough at.

Everyone has some beautiful and some ugly inside of them. Which shines through depends on what you choose to nurture. As for myself, I try to be the most beautiful me that I can.

What about you?

Watch Jordan’s video below:

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.

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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 ❤

 

Guide Dog Padawan & College Freshman to be

The school I go to right now is basically training for being blind. Everyone there is older than me and most of them had some incident later in life that caused them to be totally blind or severely visually impaired. For me it’s a little different. Partially at the urging of my parents and encouraged by the knowledge of the degenerative nature of my eye disease, I decided to take a year in between graduation and starting college to attend this program. Basically, I’m learning to transcend sight and become one with the force.

A few weeks ago, a spokesperson from Guide Dogs for the Blind came to our program and talked about, well, guide dogs. It was super interesting for a lot of reasons. The actual presenter was a guide dog user himself and brought his dog, Forley. He wasn’t totally blind. I always thought I had too much vision to get a dog or that I wouldn’t work well with one but during his talk I started having second thoughts. He talked about the relationship between guide dog and owner and how it is more about trust and allowing your dog to help you. The only technical requirement to be eligible is to be legally blind. So I haven’t officially made a decision but I’m really excited and there’s a strong possibility that I’ll be spending two weeks at the guide dog training camp. If I do, I’ll definitley write about the experience.

Oh, I almost forgot! What sparked me to think about getting a dog again and to write this post? This week, I got my acceptance letter to Seattle University. Not only that, but a generous scholarship that makes it possible for me to afford going! I am -so- incredibly excited for 2016.