This story may take turns, chances are – like most of my posts – they have improper grammar due to the fact that I’m really bad at editing myself. I’m writing this without any preparation – yet again like the mass majority of my posts. If I’m talking about one thing but then the drunken train conductor derails the train into another topic, don’t be surprised.
As you might know I was born with a physical disability that is rare and hereditary in nature. My disability is known as, or called, Hereditary Spastic Paraplegia or otherwise referred to as HSP.
My mom gave the disability to me, her mom gave it to her, I gave it to my son. My uncle, her brother, also had it. I don’t know much about how my uncle was effected, but what little I did see him he was better than I was but worse of then my mom; he was able to walk like I could when I was around the age of 23, couldn’t walk without support but seemed to have the energy to do so. My mom used to play basketball in high school, she did not show any signs of our disability until she was 18 years old.
Me on the other hand showed it as soon as I started walking, maybe even before then. I took my first step at the age of 11 months, but I fell down right away and gave up. It was kind of like I said, “Fuck that shit, I’m not doing that again.” But I did, I started walking on a regular basis sometime around the age of 3.
My disability has the nature of getting worse over time, that being said I used to be able to walk and now I can’t walk without assistance. Those of us born with the disability are theorized to plateau at some unknown point in life. I can still drive a car with the use of my feet. Even when I could walk you could look at me and say, “That kid walks funny.” It was not easy to hide the fact that I was physically disabled, in fact it was almost impossible unless I sat in a chair my entire life.
If you did not catch on by now, everyone who has my disability is effected differently, while the University of Michigan is doing studies and found the particular gene in the DNA strain; everyone is effected differently and it is almost impossible to distinguish how person A is effected differently than person B without physically having communication with said people.
My son is currently 13 years old, his mom broke up with me when he was around the age of 3. After breaking up with me she got married to someone in the military and from that my son spent the last 9 years moving from Washington State, up to Alaska, down to Texas, over to Florida, and when he was 12 they moved back to Washington State due to his step-father getting a job offer in Seattle.
Last time I saw my kid was July of 2016 when my aunt took me with her to Washington State as a way of her visiting her sister; my mom. Both of her sisters do not have our disability.
From what I can tell, my son, who has my disability according to the University of Michigan, does not show signs of our disability. He does, but you would not know it at first glance. You’d have to wait until he was tired of walking, or just tired in general. I remember being at Mt. Rainier watching my kid walk towards the bathroom, I was not really able to see anything other than a very minor angular change of his foot when he steps forward with said leg.
So this is where the story breaks off into another direction.
A few weeks ago I was on Facebook and saw one my sisters posts, in said post she used the word retarded as a way of explaining her and her friend hanging out and being stupid. From there came comments that were trying to correct her on using such word in said fashion. I go onto leave a comment that said something along the lines of, I can’t find the post anymore…she deleted it. I said something to the effect of…
I think of it as someone calling me a cripple.
Over the years I’ve learned how to poke fun at myself.
Unless it’s me using the word against myself, or a close friend using the word towards me in a humorous fashion; it’s offensive. I would not call you a cripple due to the fact that you might be offended by that, and even then…that is not the correct way to describe an individual with a physical disability.
Later that night I was in the kitchen heating a pizza in the oven when my sister called and said, “Can you please delete that last comment that you made.” With a slightly confused look on my face that quickly turned into anger I asked, “Why?”
“Because I don’t want anyone to know that I’m disabled.”
We got into a short fight afterwards and shorty after she said, “It’s not you decision to…” I hung up on her. Shortly after that I sent her a text message that said, “Don’t be afraid or who you are.” Which went straight into her asking, “Why did you hang up on me?” To which I said, “Because I was offended…”
My sister…we didn’t know that she had HSP until a blood test to try to find a cure was conducted, which is where the University of Michigan comes into play. My sister grew up showing no signs of said disability. She ran track, she was on the diving team, she did gymnastics in high school; she was a very active person. No one knew that she had it until we got word from the University of Michigan that told us otherwise. She didn’t show signs until she was….29, 30, 31; I don’t know.
It has been said that those who “develop” a disability much later in life have a much harder time coping with their new found lack of movement.
“I was offended…you’re more or less telling me in a round about way that you are ashamed that you are like your brother and that you just want to act like the whole thing does not exist.”
“No, it’s not like that at all; you just don’t have the right to tell my friends things about me that they don’t know.”
While I can agree with that, that does not mean that I was not offended. After thinking about it for the past few days I came to the conclusion that I’m jealous oh her.
Unlike her I was never able to hide the fact that I had a physical disability. I had a…difficult time as a kid. Other kids don’t fucking know, and they use your misfortune as a way to gain popularity among other kids who think the same thing. It took me a long time to figure out who I was, it took me a move to another state to understand that kids just make fun of you based on what they don’t know.
It took me awhile to understand that if you don’t give them the reaction that they are looking for (which is their fucked up way of gaining popularity) and you address, and explain, the elephant in the room people tend to be more inviting.
It took me a long time to understand this, and I’m currently in the state of mind where: Well fuck it, I am who I am; if you don’t like it, I’m not going to try to be someone I’m not.
Part of me being targeted by bullies in school was because I gave them the reaction that they were looking for. I wanted to be popular, but at that time in my life I kept trying to be someone that I was not just because I thought people might like me if I was different. That has also taught me something about girls!
If you’re a dork and you like the color pink, or whatever it is; own that shit, be proud of it. Girls love confidence, if you like to eat eggs with ketchup, fucking own that shit; don’t try to turn into someone you think she wants you to be, fucking be yourself and be proud of it! Don’t be an asshole, every relationship has it’s struggles which require compromise.
I’m just saying…if you like rap music, expand your musical tastes because she is a fan of heavy metal, don’t stop liking it because she doesn’t like it. However if she, I don’t know…stops having sex with you because you like rap; you might want to reevaluate the person that she is.
I have to understand that my sister is on a different life path, her perspective is not the same as mine. She grew up with me, in the same house, going to the same school; she saw what I went though. Or did she? She saw it, but I don’t think she fully understood it.
From my perspective hearing her tell me that was the same as, “I saw what you went though as a kid, and I don’t want that to happen to me, so I just going to Donald Trump this bitch and act like it doesn’t exist.”
Which makes me wonder, “If we were not related would she have been one of those who made fun of me in school?”
So, I understand that her perspective is different than mine, but I’m jealous that she got to do something that I was never able to do.
There are a lot of people that can do things that I can’t, I’m not jealous of them; they did not grow up with me, they do not have the same disability that I do, and they were not able to hide that disability for about a third of their life.
She has a hard time coming, and the longer she is afraid to tell people that she is disabled the harder it is going to be on her.
I understand not letting people know that you are disabled. There have been people I talked to online who have no idea that I’m disabled, I understand not letting people know. But the moment where you’re afraid to let yourself know is where my anger comes from.
Am I right for being mad at my sister for this particular issue?
How do I address it if she wants my advice? We are clearly looking at the same picture through two different pieces of glass. I can’t just look at her and say, “Shit happens, get used to it,” she wont see that the same way I do.
That’s like a mime trying to show you how to be a public speaker with the same audience.