Roots

 

One of the most dangerous side effects of having a disability or a chronic illness is self-centeredness. It’s not necessarily a nature, but nurture that drags people like me into a hole wherein all we think about is ourselves.

Parents don’t prepare themselves for a child with special needs. Despite the grim outlook that our society often has, we become incredibly optimistic when a baby is about to come into the picture. Soon-to-be parents probably hear the phrase “happy and healthy” at least 7 million times before the aforementioned child makes an appearance. So with countless hopes and prayers cast into the universe, nervous new parents head to the hospital to bring new life into the world. But then, something happens. Call it fate, bad luck, the universe. Genetics. No matter what it is, it’s something. Something is wrong.   The baby isn’t healthy and in the eyes of our current ableist society, will never obtain happiness.

This might sound familiar to parents of children with any kind of special need. From that moment on, the lives of both the parents and the child become consumed with fighting whatever “it” is. In addition, families often have to work incredibly hard to create the most normal and fulfilled life possible for the child. As a focus of attention for family and medical professionals from a young age, how difficult would it be to start believing that it’s all about you?

Look at me, I’m doing it right now! Talking all about my experience as a person with a disability. Don’t get me wrong, I think that’s important. But there’s something else, too.

The most beautiful trees would be nothing without their roots, and I believe that people are the same. For me, the support of my family has been a big part of grounding me and encouraging me to grow. This is true for many other individuals with disabilities, but not all. Unfortunately, having a disability does not mean you are automatically blessed with an incredible family. However, I was. I had parents who always had high expectations and believed in me. They instilled in me that I could do anything I set my mind to. My younger sister was born without any major disability. She was a best friend to me throughout the hardest times in my life. When I wasn’t sure I wanted to continue, her love and support helped me to be strong.

These are the unsung heroes. The ones who don’t experience the physical struggle of the disability or illness, but often go through the emotional struggles, sometimes the worst part. They don’t go out in public with a cane or a wheelchair but they love someone who does. So here’s to all those who support someone who is differently-abled. You give us wings.

To my Mom, Dad, and Sister: I wouldn’t be where I am today without you. Thanks for helping me grow. ❤

 

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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.