Why Living With A Chronic Medical Condition Is Awesome

I have a chronic condition, but I'm not sick.

Sometimes when people first meet and interact with me they ask what's wrong with me as they notice my differences. Truth is nothing is wrong but at the same time something is wrong. I have physical and visual deficits and those are chronic conditions that I've lived with for my entire life and will live with until my time on this lovely Earth is up. Am I sick? Technically no. Do I have a chronic condition? Absolutely.

Some other people ask me if I ever feel sorry for myself and the things I miss out on like driving a car and I think it'd be a lie to say I don't think about how my vision keeps me from driving but in all honesty I'd rather not drive than risk being visually distracted by something I find interesting like shiny things or whatever and die on the road. But when you take a step back, living with a chronic condition can be awesome.

I can carry a cane like my favorite TV character and no one questions me. I can register for my classes and housing early. I can have computer software that talks to me if I want (which is really cool!). I can skip lines at theme parks. The list goes on and honestly I think these things make up for the one or two things I'm missing.

I have a problem with the words 'disabled' and 'differently abled' as both seem derogatory in nature to me. I'm not 'differently abled' I'm just a different kind of girl. I'm not "disabled" either- I'm able at a lot of things and there are some things I can't do just like everyone else. I'm a human being with her own talents and flaws like everybody and I think these labels should be exterminated from our vocabulary.

A few nights ago I was having dinner with my friends Tori and Amber and we were talking about Tori's left handedness and how Amber and I can only do some things with that hand since we are righties. Amber said, "Well I can write with my left hand" or something like that I can't remember. I'm a sarcastic humor kind of girl so I say, "Well some days I can hold a fork with my left hand" but apparently Amber didn't understand this was sarcasm so she felt really bad and I laughed if off telling her please not to feel bad- I was simply making a joke.

So back on topic, why would I want to be like everybody else? Be weird because normal is so boring and it really doesn't exist. And if it technically doesn't exist than why are we telling people who are different that they should be something that isn't real? It's like saying, "Hey, you'd be better as a unicorn, okay?" No.

That's really why my life rocks. Because it's different, unique to me, and pretty damn beautiful.

Ramblings on Hemiparesis on Hemiplegia Awareness Week

I know it's been almost a month since I last posted on here but things have gotten crazy school wise and life wise too so forgive me. I will try to keep this up as best I can.

Anyway, I found out today that apparently it's Hemiplegia Awareness Week in England thanks to a charity called HemiHelp. I have hemiparesis which is the less severe form and I think that since I'm a hemiparetic American girl I should acknowledge this very fact. Right? Sure, let's go with that.

Hemiplegia most often results from a stroke, which is something not a lot of us see a child enduring but anyone can be vulnerable to a stroke and that's just reality. In the United Kingdom it is said that 1 out of every 1,000 babies is born with hemiplegia. The numbers coming out of Stateside based charities like CHASA indicate that 1 in every 2700 babies born is a stroke survivor but there is no data on hemiplegia rates themselves.

I find statistics pretty sound sources of information and while the stats may seem insignificant when put against an entire populous, they actually speak volumes.

So now that we have numbers, what is this thing? Hemiplegia means that one side of the body is completely paralyzed. What I have, hemiparesis, is less severe and it's more muscle weakness on one side versus full fledged paralysis. Hemiplegia can also affect things like emotions, behavior, sensory functions like vision and hearing, and learning processes depending on the location of the brain injury.

I sometimes help out families of newly diagnosed kids, older children, or teens via online work and communication and a frequent thing I get from parents is: "What is my child feeling?" and I can't answer that because my situation might be different from their child's and I don't want to give false information. Their child might walk with a cane like me for support or more likely they might have a completely different situation so I say I can never truly give an accurate representation of what their child feels.

Here's another important fact: Hemiplegia/hemiparesis is incurable.

Sure, treatments are out there in the form of therapies, botox, surgery, you name it but a cure doesn't exist yet. It might in the future if we ever can do brain transplants but to be frank I assume my hemiparetic body might be long dead and it won't matter to me when a cure does come along if it does but you never know with science nowadays.

But for the next sixty or seventy years I am a member of a worldwide community of individuals with this condition and I'm going to use that time to let more than just a medical condition define me.


 Me in therapy circa 1997
  A good representation of me standing in relatively flat shoes

 Despite my hemi, I love heels!

 I also enjoy walking with a cane for support

Learning to Walk Flat Footed (With A Cane!)

Sorry this post is so seriously late but school has started to get crazy so I've had to focus on that. But anyway here's my post...

From the time I could walk I've walked on my tip toes because of my stroke which isn't uncommon.

When I did physical therapy they tried to improve my gait (walk) but as a kid I was becoming a master of sass and I didn't want to. My dad actually tells me that6 when I was little some doctors tried to convince my parents that I needed my Achilles tendon lengthened and if not my knee would be overworked by the time I was 13.

I'm 20 by the way and my knee still likes me (I hope).

Last Wednesday in Yoga class my teacher (who is awesome by the way) told me that Yoga could be an alternative therapy for stroke patients and that she wanted to try it with me. First thing she challenged me to do was practice walking like we do our lunges with long strides, putting my left leg first so it will hit the ground rather than like how I usually walk. Needless to say, as an INTJ I love challenges so I accepted.

It's been a week and three days since I took this on and I'm still going strong.

So far there has been intermittent pain but it's not as bad as I was expecting. I was expecting the leg muscles I'd been neglecting to have atrophied after so long with no use but I don't think that's happened here which is awesome. I think the pain might actually just be the muscles stretching after so long of not using them and as of now it seems to have disappeared but I'm being vigilant.

Anyway I decided that a cane might help me in this endeavor so I bought one! As you know if you know me at all I decided to get a cane that looks like Dr. House's. With flames on the bottom it looks just like House's most famous cane and it's really awesome! So dative improved my walking with using it and gotten a lot of positive feedback on it from a lot of different people (and some clever jokes about it from my dad) which makes me feel more motivated to keep this up.

I've decided my sophomore year of college is going to be a year of self improvement and this is a great start for me!

 Here I am with the cane!

 My friend Jonah trying to see if my cane is a good fit for him!

 Me, my friends Tori and Amber, and the flame cane!

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.