What's It Like Living With Low Vision?

Living with low vision is both kinda awesome and a personal hell simultaneously.

I was doing some research (is anyone surprised?) on what exactly constitutes low vision versus legal blindness in the United States and I've gotten some very interesting results. Come on this journey as I share my enlightenment of this topic through my own eyes  lens.

In the U.S. we have a classification system for levels of vision loss. As most people know 20/20 is perfect vision (and a lovely two part album series by JT!). When the second number gets bigger the more vision loss a person has; for example I'm 20/70 so I can see at 20 feet what a fully sighted person can see at 70 feet away with best correction via glasses/contacts/surgery.

However, you are not 'legally blind' by definition if your visual acuity (or accuracy) is better than 20/200. When I was a little girl I was by definition legally blind but somehow my vision decided to improve slightly so now I can't actually claim legal blindness. In recent years sometimes my mom would say something like, "Helon is legally blind" when explaining my many medical conditions to whomever needed that information but I don't think she knew that wasn't exactly the case in terms of accuracy on a medical standpoint but hey it is an easier explanation, right? Way less wordy for sure.

Let me illustrate to you perfectly sighted people what my vision looks like with a picture I Googled:

See the Snellan chart that says 20/70? Welcome to my visual world, people. Funny thing is in the last few times I've been to my eye doctor when they've always asked if I could read past the fourth line I have actually laughed at the absurdity of that question. 

Some of y'all who know me well might ask, "But didn't your last eye surgery help your vision?" and the answer is no. The only eye surgery that I know of that can truly improve vision loss is LASIK (lol) which I'm a horrible candidate for.

Now that I've explained the  #VisuallyImpairedStruggle there are actually some awesome things about living with low sight including and not limited to: private turs at museums/historical sites if applicable, front row parking spaces (who doesn't love that?) if you drive or passes for people who drive you around because you're too cool to drive yourself so others drive you, front row seats at like any event ever if you can choose your seats, Braille is cool and so is large print, and a white cane or service dog makes you a badass I think or a guy/chick magnet in the case of a dog. 

Appreciate your sight, however low or high your Snellan numbers are people.

The Syndicate Theory- An Introduction

Woo hoo! I'm back for another year of school (and blogs) up in these beautiful North Georgia mountains and I could not be more excited! But I'll post about that a little later because now something else has a bit more of my interest in relation to the blog.

As an introverted scholar I also tend to consider myself as something of a philosopher and as I sit writing I'm listing my favorite philosophers/political theorists/etc in my head. I'm big on Locke's ideas, I've read some Hobbes and Rousseau and Voltaire, and I'm all to familiar with the great American philosophers like Jefferson and Franklin but an unlikely place I found a bit of philosophy recently that I liked was in the latest Mission: Impossible film.

The roots of the theory I've developed, called the Syndicate Theory (named after the organization the IMF tries to bring down in the film), are actually found in the word itself. A syndicate is, by definition in the English language, "a self-organizing group of individuals companies, corporations, or entities formed to pursue or promote a shared interest."

Thus the Syndicate Theory is actually quite simple: everything in my life, and yours, and actually in the universe works like a system to promote a shared interest. Your body? It's a syndicate that has the shared goal of keeping you alive. School? It's a syndicate with the common end goal of preparing students for transition into the real world as functioning members of a society.

Another good example is government. I am taking a Political Science class that is required for my history minor and today we were just talking about my Syndicate Theory but we called it a balance of freedom vs. order. The goal of the syndicate that presents in the form of our government in this country, to me, is to preserve the peace and freedom the United States was founded on.

Now, no syndicate works perfectly. Your body gets sick from time to time and some of those illnesses can threaten the goal of the syndicate, the school system you're in might not be well run and thus you're launched totally unprepared into the real world, governments go rouge and then collapse, etc. By nature no one thing or person can be "perfect" it's just not possible and if that were the case what would be the point of existence? Humans learn to thrive in spite of their imperfections and those imperfections motivate us to better ourselves so we can better the Syndicate that we are all a part of.I don't believe one person can change the world- but certainly a group or a syndicate can.

So that's my rambling and bit of philosophy for the day! Cheers to another year of blogs!

"You Do So Well"- A Compliment That Demeans

Hey guys! I know I haven't blogged since summer started but I really wanted to do a post on something I feel strongly about. I'll try to get back on blogging reguarly when I go back to school in mid August!

Anyway, the post I want to do is on something I've seen as a growing issue in the disability community of America. Often when people who are able bodied see a disabled person doing what they do they feel inclined to go up to them and congratulate them on accomplishing a normal task. Most able bodied people think that they are being nice by complimenting their disabled counterpart on whatever they're doing and I'm sure they have good intentions but these compliments draw attention to the disabled person and often that attention is unwanted.

I have had many people approach me in this way throughout twenty years of personhood and by now it's just annoying. Like I said earlier I'm sure people have good intentions when they compliment me or any disabled individual if they do something people see as "normal" i.e. activities done by mostly able bodied people.

"You do so well" or "Good job!" seem harmless but believe me when I say that most disabled individuals do not want to be called out- even if it's in a good way. We want to fit in just like any person would and acknowledging that we do normal things DESPITE a disability actually has the opposite affect. It singles us out and frustrates us.

Now I'm not saying compliments are bad, but all I'm saying is that able bodied people who want to give the disabled people that live among them most of us just want you to think about your compliment and how you deliver it will be perceived by the complimentee. Like some people tell me, "Wow! You do so well with normal things despite having less motor function than most people!" and that will usually get a nice response from me in front of the complimenter but anger me in my mind and frustrate me. Why don't we compliment everyone on doing something; why do we single out drawing attention to the disabled?

Is it because we try harder to live a normal life? Are people truly inspired by that? I don't think they should be. We're just like you trying to live our lives as normally as possible.

My Views On Medicine As A Practice

If you guys read this blog regularly, you know I like sharing my thoughts with others. Last post I covered my views on religion and this post I'm covering my views on the medical community just because I think I should share them. Medicine to me is basically the profession I love to love yet also love to despise entirely. Go ahead, tell me I'm being hypocritical: I know.

I also tend to think, in my nineteen year old mind, that I'm one of the smartest people on this Earth even though deep down I know that's a lie. Everybody lies.

So that brings me to living my whole life believing I was scared of/smarter than pretty much every medical professional I have encountered in nineteen years full of therapies, MRIs, CT scans, and two surgeries once I understood the medicine behind what was being done to me. I grew up hating every single appointment more than any other kid I know of, spitting on doctors and nurses because I was a little sass queen, etc and it stayed that way until I was probably a sophomore in high school when I took my Intro to Healthcare Science class.

Then I started to get interested in medicine and I haven't looked back.

In the two years I took my Healthcare class I learned how to think critically when in a medical situation. I learned to question medical opinions if needed and to read up on any information I was given. I learned to only put my trust in people who knew what they were doing. These lessons were cleverly woven in through learning how to administer injections (to oranges- a great stress relieving technique), learning to make hospital corners on beds, medical term videos that have taught me a great deal of the medical jargon I know, and watching House (my one true love in a TV show format).

I blogged a while ago about my last surgery experience in July, but a thing I did not really focus on in that post was my thoughts throughout the experience. I actually have a very clear memory of asking one of my anesthesia team that day about anesthesia awareness/how they planned to prevent such an occurrence and I recall whoever it was that I ask being vaguely impressed.

Since then I have gotten into any medical show I can find especially House and Grey's Anatomy. Probably by now most people know that McDreamy got killed off last week and I watched the episode and I could point out the errors the medical team (that was not from the hospital where Grey's is usually set) was making and I was screaming at my computer screen things like "HE NEEDS A HEAD CT SCAN OMG HOW CAN YOU NOT KNOW THIS?!"

Like I said, I could never actually do any of that, but I love being informed.

My Views On Religion

Okay guys, so I've been reading a lot of articles on Thought Catalog or wherever about people's views on religion/whether God exists or not etc and I want to share mine. But before I do, let me just say I am absolutely not trying to discourage your own religious views. I have mine, and you have yours and most likely they differ greatly but that's cool. Isn't that what the world is built on, diversity?

I have friends with all kinds of religious views or none at all but that doesn't make me love them more or less. They're my friends so I love them unconditionally for them and enjoy swapping views on religion with them if the topic comes up. Same with my family: we're a mix of all kinds of Christianity and that's pretty cool.

I'm a scholar: I love learning about things including religion. I've recently gotten into Jewish history and culture and have enjoyed embracing that journey. I guess everyone has their own sort of spiritual journey and that must be part of mine. Going along with being a scholar, my thought processes are based on logic and reasoning rather than faith so that's the opposite side to that coin. I do not believe that faith alone will get you anywhere: you've got to work to get there and have faith in whatever it is (yourself, God, etc) along the way.

I was raised by parents who are Presbyterians and that works for them which is great. They baptized us which made sense at the time since we couldn't think for ourselves as infants. When you get to eighth grade in their church you go through Confirmation which is like a Bar/Bat Mitzvah in Judaism (but far less studying or fun) because you become responsible for your own religious actions from then on by expressing that your faith is yours and not your parents' faith on your behalf.

So I went through that, yes. But at thirteen I knew so much less of the world and couldn't think for myself as critically as I am able to now. Looking back, I wish I would have questioned more and figured out what I know now a little earlier.

I became agnostic probably my sophomore year of high school.

I am agnostic because I believe that I cannot know if God as a higher power exists. That question is too much for humans to comprehend in my opinion but yet I don't believe that God doesn't exist. How can people not look around you and be amazed at what you see? I'm pretty sure only some form of a higher power plus a little evolution could create such a beautiful world.

To my understanding, Christianity is based on the idea that everybody has a personal relationship with God. But God is also overseeing the universe right? Then if that's the case, he obviously doesn't have time or energy to care about what a college kid like me is doing while the country of Syria is tearing itself apart with civil war and innocent people are being killed. If I could talk to God I'd ask him to please focus on the latter rather than me. I'll focus on me, you focus on issues over my head and that sounds like a deal.

And I'm cool with that. you do you God if you're out there. I'll do me.

Am I Inspirational? Yes? Wrong Answer

The correct answer is no, I am not.

I saw this link on Facebook that was about how calling disabled people inspirational has become such a cliche that it's almost insulting now and I agree 100 percent. To me an inspirational person is someone like Louie Zamperini who overcame unimaginable cruelty as a POW or someone like Princess Diana who fought like hell for the causes she believed until she died.

And what have I done exactly? Yes, I survived a stroke when I was a mass of developing cells and organs but in what world is that inspirational? People have told me I'm an inspiration to them and by now if I don't know the person who tells me this it annoys me. So I've inspired you to survive a stroke? Lovely. I wish you luck with that.

One of my friends saw I had shared the article and she commented on it. She said, "But you are inspiring. You deal with issues so beautifully. Things I do take more work for you but you still love life and are positive. People nowadays are so lazy and 'I can't' and you're so 'Um yes I can'."

Now, coming from a very good friend of mine most of that is extremely sweet but there is one problem in the third line. Things she can do I can do too BUT actually we do them putting in the same amount of work. Just because my brain is rewired does not mean I have to work harder to do day-to-day things; all it means is that I found ways to do them differently to make sure my body doesn't overwork itself by trying to do things like she does.

That's not inspirational at all. That's what I call the "Adapt or Die" instinct that all humans have inside them. Our will to survive in hostile environments is astounding. If I hadn't adapted to my own body it's vert unlikely I'd be where I am.

If I were an inspiration, I'd say I could do anything. That's wrong.

There are many careers I know i cannot do. I will never be a surgeon because of the way my left hand is not on par with my right, I will never be a rocket scientist because I know my math skills are definitely not good enough, and those are just two really good examples. Now, I'm not a pessimist at all but my school of thought is based on logic. It does not seem logical to me that a sane person would want to have a person with very good use of one hand and little use of the other operate on them. I know I wouldn't.

On the flip side of that, there is a lot I could choose to do as a career. My absolute dream is to be an author and historian but considering neither of those make any money as a sole career I have considered possibly going into medical law. Medicine has always fascinated me as a whole and by working on the legal aspect of it I am in no danger of making a mistake that could result in the death of an individual. So yes, it's very plausible I could do that.

So bottom line: don't you dare tell me I'm an inspiration to you because of what I've gone through/survived as it comes off wrong in most cases. If you want to be inspired by me, I suggest finding inspiration in how my existence can contribute to society through the work I do rather than my backstory.

The Scars of USHMM Part Eight: The Broken Educational System On The Holocaust

I am taking American History II and today we learned about the Holocaust.

I went into it really excited because since this is a college level history class we go quite in depth on most of our topics of study so I assumed we'd do that for the Holocaust. So as I'm sitting in class and listening I'm making a silent tally of the incorrect/omitted things I hear. 

We did not mention the Nuremberg Laws of 1935 that ultimately made the Holocaust a legal action, we did not note that there was a distinct difference between the workings of a concentration camp vs. a death camp, no mention was made of any of the heroic efforts some people made to rescue victims. We talked about it for thirty minutes and hardly touched the material.

Needless to say I was very disappointed and a little angered.

In my opinion, I think we need AT LEAST two days spent on the Holocaust as its own mini unit rather than a side note of World War ii. That way educators can hit all the highlights without feeling rushed to get through it so the material can be tested on. That two day unit should not include a test but rather hands on activities like hearing a Holocaust survivor or maybe doing something like the Trunk Project where students actually learn the material by working with it and putting it to use.

I totally get wanting to make sure students know about what happened in the Holocaust, but a big part that education is missing is the significance of the event and how it still affects us today in 2015. We've experienced genocides since 1945 and I believe that a large part of few people speaking out against these atrocities is a lacking education on genocides of the past. If you don't know about and learn from past mistakes how are you supposed to not make them again? This truly boggles my mind.

In a quote by Ronald Reagan that hangs in the museum he explained why remembrance and education of the future leaders of America was so important: "We who did not go their way owe them this. We must make sure that their deaths have posthumous meaning. We must make sure that from now until the end of days all humankind stares this evil in the face...and only then can we be sure it will never arise again."

We are the witnesses. It's our job to make sure that others are educated properly about these things and know when to recognize them in practice and then intervene. That's what we missed back in the 1930's and 1940's: we didn't know how to speak out and we were afraid to because of uncertainty. But I can tell you, doing nothing and regretting it is much worse of a feeling than speaking out and few listening. If we do nothing, then the perpetrators of crimes like genocide win and that's why I believe there is so much evil in the world today.