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