This Is Me: Autobiography
This is me
This is for all who are afraid to tell their story; the people who hide behind the characters they made. And for the people who have been told they don’t have a story to be told. For those who don’t have the voice to say what’s in their heart.
“It takes a good writer to create a story out of thin air but it takes an even better writer to live the story they wrote.” __ Jessica McDonald
Hi, you may not know me. But you might know my writings and the stories I’ve created over the years like The Hidden Life and Old Time Love. Or my poems as the brown eye girl. But you don't truly know me. I think it's about time you know my story of who I am. My name is Jessica McDonald or Jesse McDonald. I’ve somewhat been hiding behind my characters for as long as I can remember. Writing this way is a struggle for me. I mostly wrote with Meredith’s voice or Freya’s. Or as the brown eye girl in my poems. My story is different from the ones I’ve created for fiction. It’s a bit of a well best word for it is sad and a little depressing but some of it is amazing that I have made it this far. Before I start my story, I have to say I’m not going to name names, I'm going to use titles instead. Some titles you might know from my poems. And I must ask of you all to respect their rights to their own life. Please don’t ask who they are in real life.
If I am going to tell my story the best place to start is at the beginning. I was born with a rare heart defect so rare that only 1 in 12,000 babies have. The doctors had to create a surgery just for me. They had to bypass the great arteries on me when I was six months old. Something unheard of on someone that little. Due to my heart defect I had to learn my limitations. (Which as you can imagine there are a great many of them. One of them being I can’t run so I best hope zombies never happen.)
When I was around five years old my father told me if I feel like something is wrong with my heart or feel like I can’t play after a long time to sit down for a few minutes or so. Or if I felt any pain in my chest to where I couldn’t breath to tell him or an adult. (Back then they still didn’t know the full details of how good or bad my heart was.) I asked him “If my heart is so whatever, why don’t they get me a medical type bracelet.” The look on his face was kind of stunned. (If it wasn’t for my father I wouldn’t have been able to run around and play like a normal child at the park. Or know how to climb the jungle gym without getting tied up in the rope chain.) It wasn’t long after my father got sick with cancer. As far as I remember him my dad was a good guy to myself and sister.
We would watch old reruns of his favorite show or some cartoon stuff that would make him laugh. He had enough people fussing over him. My dad didn’t need his own children doing that either. I got him laughing several times by being a smartmouth.
I remember my sixth birthday party. It was a slumber party with my cousins and an aunt who I really didn’t know. When one of my cousins didn’t show by eight o’clock my mom called her mom. My mom asked why my cousin wasn’t there. That aunt said that her daughter had better things to do. That it was bad enough that her daughter hung out with me during the week now she had to spend time with me on the weekends too? The aunt who I just met got pissed off. She was all set to go over to their house and yell at her. The aunt who I just met wasn’t much taller than I was. My aunt was eleven years older than I am. Try to picture that in your head. A short blond-haired woman who wasn’t even five feet tall wanted to go and yell at someone who was a foot taller (and a couple decades older) than she is. My mom had my aunt do busy work frosting cupcakes; needless to say, a couple of cupcakes looked a little messed but still tasted good.
Also during my sixth year of life, I had eight stitches put in my left hand. My cousins and I were playing jumping off our grandma and grandpa’s porch. My grandpa told us to stop, or someone would get hurt in some form. And of course, I was the last one to jump, landing on a piece of glass. my grandma and grandpa fought with one telling the other to shut up and the other said no they won’t because that is what the other one wanted.
Two of my aunts took me to the ER with a dishrag around my bleeding hand. When we got there my aunts and I had to wait a good thirty minutes until one of my aunts threw a fit and they got me into a room. Later on when I was at one of my family members' houses my dad called to see how I was doing. He started doing funny voices to get me to laugh. He was more worried about me and how I was instead of his own health.
A few weeks later I got a road rash on my stomach from riding in a go cart. My cousin was driving way too fast on the black top and there were no seat belts in it.(Before everyone throws a fit it was the 1990’s and in Alabama you are lucky we were seat belts in the car growing up.) The zipper of my jacket got caught in the back tire. The right side of my stomach was pressed against the black top. My dad joked saying maybe they should put me in a plastic ball of some kind. I also remember my dad throwing my 7th birthday party in the back of his brother’s yard. I remember that nothing went right that day. The clown and the power ranger didn’t show up but the air tank for the balloons did. (Don’t judge me on the power ranger thing I’m sure all you and embarrassing cartoon characters you liked too when you were seven. And the power rangers kicked ass back then.) My dad started sucking in the air and doing funny voices. His mom told him to stop because it would make him even more sick. They fought back and forth with his mom having the last word.
One of the other memories that stand out in my head was the last Christmas we had with my dad. All us kids (six out of seven girls) were running around like loons in a nuthouse. You know screaming and laughing at whatever Christmas specials on tv. Us girls singing songs parents tell us girls to shut up or to keep it down. I think my dad told us to keep at it and keep playing. It was entertaining to watch us drive his mother and father crazy. The rest of that Christmas is a little bite of a blur but to be fair it was twenty nine years ago. It wasn’t long after the new year that my father passed away from cancer.
I can’t remember what happened after that. I know my mom and grandma fought back and forth for a long time. My grandma told my mother that we belonged in Alabama that she didn’t have the right to take my sister and I away. I remember packing up some of my stuff and my mother took us away from there. Before anyone says anything is how we left (I’m sure someone is going to make a rude remark on it) we didn’t run away from anything, maybe the pain we ran away from losing my father. But if anyone ever lost someone you know why we had to leave. Before I go any further in my story, I have to say that no one in my story is a bad person. Their actions might have been questionable at the time, but they weren’t really bad.
To make my point, I remember when I was little we were living in Alabama on some back road.
My mom wanted to move to West Virginia but my dad wanted to stay because his mother had so many plans for his daughters. He was going along with her crazy plan.
Next thing I know, my mom and dad were yelling and fighting (which they normally didn’t do around my sister and I.) My dad packed our stuff and put my sister and I in the back of his car. He was threatening to take us away from my mom.
Then as quickly as it happened, the fight was over and we were all back in the house. I might have been little and not know one hundred percent what was going on. I knew something was wrong. Us kids know more than we say.
And yeah this is me finally saying what I saw. My dad wasn’t always like that just so you guys know. I only saw him yell twice in the short time I knew the man. The other time was when I was a little older and my dad wasn’t getting around very well due to the cancer. He was using a cane.
My sister had left a blanket in the middle of the living room floor and took off to our cousin’s house. When my dad tried to go to the kitchen the blanket was still on the floor (I was taking a nap.) and my dad almost tripped over the blanket. At first, he thought it was my doing. He was going to wake me up and tell me to pick it up. But my mom told him that my sister left it there.
My father then got on the phone and started telling his brother to bring my sister home to clean up her mess.
As I said when I started this part my dad wasn’t a bad guy, just his actions during those times weren’t really nice.
It wasn’t but six months after my father had passed away we moved to West Virginia like my mom wanted to a couple of years before.
She moved us in with her mother, my other grandma who I barely knew, and my aunt. They got my sister and I set up in schools and all that stuff and we each got our own rooms.
Back then everything felt like it was going too fast. I was partly confused during that time in my life.
Shortly after moving to West Virginia, it was my eighth birthday. (my first birthday without my dad) and my grandma kind of invited the whole neighborhood over even though only maybe a few kids knew me.
I somewhat remember that birthday party. My grandma was having two rooms built in the back of her place and us kids were jumping out the door opening.
(Yeah even after getting stitches in my left hand I still didn’t learn my lesson from age six.)
We all had cake and ice cream, all that kid birthday stuff. I think I even told all the kids that my grandma cut out early to go to bingo.
All through the party, I kept looking out the sliding glass door looking for well sad to say, but I was looking for my dad. His mom told me he was resting and to a little kid that means ok he was taking a nap and he’ll be back.
But he never did show up for my eighth birthday party. Yeah, I was being a stupid kid back then. I kind of knew he wasn’t going to show up but I was also wishing that he would. Then soon after my sister’s birthday, my mom left.
She had met someone on the net and was going to go and meet him in a different state. No, she didn’t take us with her this time around. I guess she needed time to heal after my dad’s passing but she could have healed with us instead of going off to meet some guy. But as they say, what is done well is done.
In the years that followed, we saw her a handful of times and even lived with her for a spell but more on that later on. We got care packages from her ever so often for birthdays and holidays.
I might not have known what the hell was going on at the time, but I know that my mother should have stayed with us.
When first grade started, a lot of kids felt sorry for me for not having a dad and I also got into trouble for mouthing off to my teacher.
My friend (who later becomes the perfect best friend.) was always being called the wrong name. She always called him by what she called his proper first name, not the name he went by.
I stood up (more than a few times) to tell her to call him by the name that he wanted to be called. Screw the proper name thing. If he wants to be called a certain name then call him that.
Needless to say, I got detention for that. She had playground duty that week so he and I were to sit in the room (different ends of the room) with our heads down. We didn’t do that, we got up and played instead; he and I thought we didn’t do anything wrong.
But right before the bell rang, he and I got back to where we were supposed to be when she got back.
It was probably the best detention I had ever gotten.
Preteen/teen years
As you can guess growing up with limits could be challenging at times. I couldn't do this or that. But it didn't mean that I didn't try to keep up with the other kids in the neighborhood.
And I did stupid things that caused me to get hurt. I got a splinter in my back. (My back was itchy and no one would scratch it for me. Can’t blame me for trying to make my back feel better.) The grade school I was at had a wooden playground not sanded down like it should have been. Anyone with half a brain would think to do that with kids playing on it. I was taken to the health office and then sent home. My aunt tried to dig it out with her nails. Didn't work. (It just dug deeper into my back.) I was sent to the doctor's office to get it out.
A few weeks later I got hurt again by falling down and busted my knee up. I saw the blood and passed out. When I fell I was playing tag with my best friend when he noticed that he wasn't being chased anymore he ran to where I was. He freaked out and ran to a teacher yelling "Jessica is dead!" I still feel sorry that he thought that. The poor guy was crying when he told the teacher that. “I felt so bad that he thought that when I woke up I was saying don’t worry i’m fine.“ At that point my first grade teacher thought it was best for me to be with other children like myself. That is when I was put in the learning disorder classes.
I don’t even think they even asked my grandma if they could put me in those classes. They just told me to grab my bag and sack lunch then walked me down to those classes. Throughout my schooling I went from learning disorder classes to mainstream classes. And I noticed once you become labeled as learning disordered or special ed a lot of the kids treat you differently.(Like you are breakable or whatever they think that goes with learning disabled.) Lucky for me I had two very good friends, a guy best friend and a girl best friend. We all had a great time hanging out playing hide in seek at night because we were edgy like that.
On top of going to class I also had physical and speech therapy a good part of the week off and on. Before I got switched to the learning disorder classes I had to do my therapies during breaks. LIke Monday,Wed and Friday mornings i had to miss out on the morning break. Tuesday and Thursdays I missed out on afternoon breaks. A part of me understands why that teacher did what she did to me. But the eight year old Jessica didn’t understand why she had to miss time with her friends. For a child who was made to move a lot to make new friends, that thirty minutes of break is important. Especially since I only had a few real friends. The other kids would make fun because I was the shortest in my class but oldest; for having the last name McDonald; for having a scar to name a few things.
I remember one day after school i was sick of being made fun of. I was kicking the living snot out of my dresser and my guy best friend came over. He saw me kicking my dresser and asked me why. I said because I was mad that I was being made fun of all the time. He told me when he was sick with the flu he watched these talk shows how people took their anger and used it for creative things. For music,art and taking photos. He saw the notebook I got for my birthday sitting on my bed and grabbed it. The boy slammed it into my hands saying “Stop kicking the damn dresser and do something with your anger.” See it’s really him you have to thank for my writing. I’m not saying that my other best friend didn’t teach me anything but it was my guy best friend who helped me find my talent. He was so pushy even for a six year old. I’m joking but the people who knew him knew how he was.
I did learn stuff from my girl best friend as well. To sit back and be patient with things. She and I would play dolls or draw things. I think we even acted like we were cooks at one point and tried to create a snack. We were well I don't want to say fanatics but we were when it came to movies. For someone who wanted to get up and go, go, go I'm surprised that she didn’t have to duct tape me to the sofa. She is a girly girl who paints nails and makes up things. And yeah she tried to get me into that as well. For people who know me personally know that is not me. I don’t even own an eyelash curler or an ounce of lipstick. It just isn’t who I am and she gets it. Almost every other weekend we would spend the night at each other's houses. It was really fun just spending time with my friends back in the 1990’s back before everyone had computers in their pockets. When kids would actually go outside and play we were expected to be home by the time the street lights came on. But all the time I was having fun with my friends. Sadly, my mother was far from my mind. But it didn't mean that I never thought about her.
In a way my mom thought that living with our grandma was a bite more stable for us. We got to have friends and our own rooms. We got to be normal as possible with what was going on. As i said before i didn’t know a whole hell of a lot what was going on back then all i know is i went to school came home and hung out with my friends. But that doesn’t mean things were going on that my little ears hear i just don’t really remember it very well. I know i missed a ton of school for this reason or that. I was also put on the special ed bus (the short bus) which didn’t help the teasing. The girl best friend’s brother used to bully me when we were children. There are always that one kid in the neighborhood. Mostly teasing me about my last name and stuff like that just little things. My aunt would say he is just doing that to either get a rise out of you or he has a crush on you. I was like sure he does and a pig is going to take flight any second now. My aunt rolled her eyes at me a little annoyed at my being a smartmouth to her. I remember one night I couldn’t sleep at all and my aunt had the great idea to give me coffee. She gave an almost nine year old a cup of coffee at like nine thirty at night. Smart move lady. But oddly enough it worked. i had to run to the bathroom the next morning like my hair was on fire. But the coffee put me to sleep. She might have thought that the coffee would offset my medicine and chill me out enough to where I can sleep. Which is odd within itself.
A little after second grade started my mom and her boyfriend (yes the guy she met on the net) came and got my sister and I. She moved us to a state up North called Wisconsin for a while. She had a house for us and everything. My sister and I had to share a room during that time. The room was smallish and my sister had her favorite boy band plastered all over the walls with tape. My sister and I stayed with our mom for a good long while. i want to say a good six or seven months we stayed with her. And during that time I was pushed up a grade because they actually thought I was smart in that school. I aced one simple test and they put me in third grade. (Yeah you can say I fooled them well at that school.) At that school I got the help I needed from my teachers to where I wanted to learn. Also during that time there was a lice outbreak and yours truly got lice and had to shave my head. Yeah the rest of that school wasn’t fun. A lot of the kids either stayed away from me or thought I had cancer. I would rather them leave me alone than to them thinking I was sick.
When I got back to West Virginia back to my old school it went from she is smart to she is dumber than a bag rocks. The school thought about sending me back to second grade because they felt that the school in Wisconsin had made a grave mistake. It wasn’t until a social worker came to the school to talk to me about my time with my mom. I didn’t know what was going on. I thought I was in trouble or that they wanted something from me. No one is ever that nice to not want something or they have very bad news. But then again that might just be me. I can’t remember what I said to the lady at all. But I have a feeling that it wasn’t that bad because I think they were trying to see if I would get my mom into trouble. I think I told them I had a good time with my mom and everything was fine. Not sure if they talked to my sister about our time with our mother or not but I guess they seemed happy with my answers to their questions so my mom didn’t get in trouble.
Nothing else really happened really. I did dumb kid things like trying to run away from my grandma’s to my best friend’s who lived on the back part of the trailer park. I wasn’t allowed off our street unless I was with my sister or an adult. Guess shady things happened on the back street of the trailer park. Never know in the 1990’s. And no it wasn’t like the trailer park from boy meets world either. The trailers in the little community were very nice; the neighborhood was big and kept to look nice. It was on a mountain with very sharp turns. But once you get to the top of the mountain it flattens out and the first thing you see is a little tiny store. Almost every day us kids would go there and get sodas and candy bars stuff like that. It had few games like pinball and few others. I want to remember that it had a good decent pool table but it was almost always out of chalk. But i have a feeling that no matter how much chalk i had on my hands or whatever i would still suck at playing pool; I still suck at pool.
When the fourth grade rolled in I had to have my first heart test that I could remember. It was a heart echocardiogram. For anyone who has ever had this done who is older than ten years old you might think it is a cakewalk. But for me those machines kind of freaked me out. Plus I was pissed off that I was missing the opening of the special olympics where they show off all the schools. It was the only day that the lab tech was available to do the echo. When we got in the room I saw all the machines. I thought they do know I'm tiny right? How are they going to hook up all those machines to me? But my aunt stepped up and explained the machines (after the tech explained to her) what they were. And she made sure that I was comfy and felt safe. Had a bottle of water for me and had them put on some cartoons for me. It took two episodes of the cartoons for the echo to be done. After everything was said and done I was dropped off at the special olympics for the afternoon. When my grandma went to sign me in, the lady at the gate thought my grandma was dropping off two kids, not just me. She pointed to my aunt asking if she needed a shirt for the day. I have never seen my aunt so mad at someone. She was like a little girl. I am out of school and I will be more than willing to put you over my knee. I had to get her to settle down saying that the lady thought she was a helper for the day. It went all the way up to grade twelve. I had to wait until they left before I could really laugh at what happened.
Having disabilities can be a burden on not just the person who has them but also the family who has to be pretty much a taxi service for the person. It’s hard to find specialists who know even a tiny bit about rare heart defects. So far in the heart docs department I have gotten lucky through the years but other docs who are my primary docs sometimes listen to my heart and say your heart sounds out of order or messed up. That is when I tell them to look at my records. I have had a few school nurses do that too to me. Then when they find out about my heart they treat me like she is so breakable. I wish they would have just treated me like any other kid when I was growing up.
Sometime in fourth or fifth grade I busted my whole bottom lip open on one of my friend’s trampoline. They were trying to teach me to do a backflip and I missed stepping and my mouth hit the (ironically) safety railing and my bottom lip was pretty much gone. That was the first time I swore out loud. My friend was laughing like a loon. Not because I got hurt he was laughing at the fact that I actually swore at him. When I got home I told my grandma and aunt that I tripped over my two left feet and fell on a rock. I think my friend’s older sister called my home and told them what happened. I get it they were liable if I got really hurt at their house. When I went to school the next day I told a story that I was in a fight. That they should see the other guy. My friend was like yeah she barely made a dent on the railing of my trampoline. The look I gave him was like really I had them going. Guess that is what I get for lying or telling tales like that.
The rest of grade school years were fine other than a few little hick ups of normal as it can be for me. Yeah I had some fights with neighborhood kids. I tested my boundaries as well like other kids my age. There was another girl who had surgery that could have killed her as well. My aunt thought it would be nice if I knew another girl who was special like me. She was nice at first, a very sweet girl. But that was just a mask she wore in front of adults. My aunt thought she was just miss understood. But here's the thing there is being mis understood and then there are just pure bats snot crazy. She would tell me the worst things like my dad didn’t have Cancer he died of shame for having an R word for a daughter among other things.
One day I was over there because she asked my aunt if I could come over and play. Everything was going fine. She and I were taking turns playing popcorn on the trampoline (Yeah i didn’t learn my lesson from before.) We got off the trampoline to go inside to get some snacks. This next part is a bit fuzzy for me but the next thing I know I am rolling down a hill that she pushed me down. When I got back up from the hill I had cuts all over my arms and legs along with a little poison oak.
I wasn’t allowed to hang out with her for a few weeks then she asked my aunt if I could spend the night over at her house. Everything was going good great even we had mac and cheese with hotdog chunks. We played games and watched a couple movies. We went to bed at maybe nine. All in all a great sleepover. But in the middle of the night the girl woke up and woke me up and decided that the sleepover was well over with. She told me to get out of her house to go home. It was three am and i had to walk close to seven blocks to home. (In hindsight I could have just went up the road to my guy friend’s house and stayed there for the night and he could have walked me home the next day. But i was half asleep.) Lucky for me someone was out and about late at night on their four wheeler and they took me home. They told my grandma what happened and my grandma was well there is no better word for it she was pissed off. She went over the next day and got my stuff for me and told the girl’s grandma to keep her away from me. That was the end of that very short friendship. I understand why my aunt thought it was a great idea for me to be friends with someone else like me.
Another rarity in a way but sometimes the people with rarities don’t always get along. And sad to say, sometimes people with disabilities and mainstream people don’t get along either for one reason or another. Mostly because the mainstream person doesn’t understand what disabled people go through. They think that people with learning disorders or physical disorders are either faking it or we are just not worth their time.
In a way my aunt taught me that not everyone with disabilities are not all smiles, some like that little girl can be hurtful in some form.
As I said before, my girl best friend and I would spend pretty much every other weekend spending the night at each other’s houses. One of the sleep overs was going normal until my mom called and told my grandma that my mom’s boyfriend died from a heart attack.
It was very heartbreaking to hear about him dying. I might not have known him very well but he was very nice, a teddy bear of a man. It ruined the mood of the sleepover for the rest of the night. Everything went in a blur after that like it was on fast forward to a point.
I can’t remember when, but one of the days while my friends and I were in school a trailer caught fire. My guy best friend’s home burned from the inside out. His family had to move out to a whole new place close to thirty minutes away. It hurt to see him having to move away but we stayed in the same school. It sucked that we couldn’t hang out as much but then again him moving didn’t stop him from being around.
In my grade school days, I came to depend on my friends not just for friendship but I guess for protection in a way.
One of the kids at the grade school was trying to get every kid to race him down the hill to the swings and he finally got to me. With my heart defect and just being a klutz, I kept telling him no over and over again. He kept calling me chicken and everything else he thought would get me to race him. I was tuning him out the best I could then he said “Should have known the R word wouldn’t want to race me.” My guy best friend had to hold me back from hitting the kid. I am not normally mean or violent but calling someone that name isn’t right. (Truth be told, I'm sure he didn’t know what that word meant.)
That might have been the first time being called that name but it wasn’t going to be the last time.
Throughout the years, people like me have been called that name and people make excuses for why they call others that name. I have heard a bunch of reasons why people say that name. There isn’t any excuse for it, not one reason why that word should go through your voice box for others to hear.
One excuse was that I didn't understand the meaning of that word. I understand the meaning of the word. I don't think they know what it means. I know that at some point some words just come out like they aren’t thinking about what they are saying. It just comes out.
How about instead of talking out of your backside you use your brain and think before you open your mouth and maybe crack open a book, you might learn something before you talk.
As I said, that might have been the first time being called that word and it won’t be the last.
One of the things I remember very well from grade school was when I couldn’t step one foot out of the house for a whole day.
No, I wasn't sick or anything, my family was being threatened for some unknown reason to me back then. Then again, I still don’t know why I couldn't leave other than some insane person kept calling the house telling my grandma that if any of us left the house we would be dismembered. (and no this isn’t from some cheap horror movie or even some scariest show on tv) It seemed that someone in the family really did a number on the person and they wanted to punish the whole family.
It was the longest day in my life. I wanted so badly to go outside and play or even go walking around the neighborhood. My friends wanted me to go riding my bike with them but my grandma told them that I had a stomach bug or something that day.
I’m still not sure if that person was ever caught but for a few weeks I was stressed out and worried that when I went to school that would be the last time I would see my family. I would run home from the bus to the house. I think that is the first time I ever felt anxiety at the age of eleven.
For a long time, I tried to forget it ever happened but it’s hard to just put it out of your head when it’s always there. The feeling of not knowing, that stress isn’t something you can just ignore like a teacher that you just tune out. It stays with you always in the back of your mind waiting to hit you like a hammer.
The feeling of not knowing is what gets your heart racing and gives you the sick feeling in your stomach. I still deal with anxiety just for other reasons. For those who have read my poems you would understand.
I moved on to middle school with little to no effort on my part. The middle school was right across the street from the grade school so it wasn’t like I was going across town to go to the middle school. We also had a teacher who came to middle school with us.
The best part of middle school at least for me was soda machines and possibly being out of the gym if I joined the school band. (needless to say I never got to join the band.)
On the third day of middle school, we got down to the schooling and got new science books and were allowed to look through them. It didn’t take me long to see something I shouldn’t have at the age I was.
I’m not going to say what I saw, but anyone who has been in sixth grade health class or science class you can guess what i saw. Needless to say, my face was the color of the reddest tomatoes.
The girl next to me saw what I saw and tried to tell the science teacher. I pulled her arm down and said "hello, he has one of those shh." When he came around, he asked what was wrong. I lied and said we saw a huge spider in the corner.
I was so embarrassed that I couldn’t look my guy best friend in the eyes for a good week. I still laugh at times thinking about how red I went back when.
To think that I was so innocent at one point. I sometimes wish I could go back to that time, to the simpler time.
Many Schools In a Few Short Years
I went to three different middle schools, all in three years. Two in West Virginia and one in Wisconsin. Going from one school to the next you learn how the school deals with disabled/learning disorder students in their care.
The schools in West Virginia kinda treated us like we were at the bottom of the pole of things. We were in the probably not the worst part of the school, but pretty close to it. The middle school in 7th grade was only a little bit bigger than the one in 6th grade but not much. They didn’t treat the disabled kids like they were people. I got a heart doctor’s note to get me out of a lot of the things for gym class like sports.
When I handed it to the gym teacher (who insisted on being called coach.) He read it, called it bull spit, and tossed it. He made me run laps. If he caught me walking instead of running he would add another ten laps. So for a few classes I was just running (walking) laps. All I remember from that middle school was that I was happy to get out of there when I did at the end of the year.
The middle school I went to was in Wisconsin and it was probably one of the best schools I went to tell the truth. The eighth grade school actually treated the learning disorder/ disabled kids like they were people. Like we actually mattered.
Sure there were flaws in the school, but in all the schools or should I say that the teachers had us in both mainstream classes and learning disorder classes as well. It was a great balance for a lot of the kids I think. The learning disorder teachers expected us to actually learn something from them which was very refreshing from what I came from. As an example a teacher had us do five paragraph papers on books. She even had us reading books that were above our reading levels. She believed that we should be challenged in school. In her words if we weren't challenged then we weren’t learning. And no she wasn’t doing it to be mean or hurtful; she was just trying to get us to rise to the bar we should be for our education.
The only flaw I had in that school was they didn’t have everything I needed. I was supposed to have speech therapy and physical therapy until I graduated school. But that school told me two things, thinking they were helpful. One, talk slower (I'm from Alabama. If I talk any slower I would be talking backwards.) And two, to watch where I am walking. Great advice really. (why didn’t they just tell me to crawl like a toddler instead?) Besides those couple of things the school was amazing. They treated us like any other kid if we got into trouble we would actually get detention for it. They didn’t baby us or just tell us to sit there and look at a wall for eight hours during the day. That is probably one of the best schools I went to where I actually learned stuff.
When I left that middle school, I actually felt ready to go to high school. But when I started high school the following fall I felt like I shouldn't be there at all. There were these huge kids over two feet taller than I am.
It was like I was the fourth grader going to visit the big school every day at that school. Like I was the outsider told to fit in.
There was a show on a network years ago where the little kid was so smart he got into high school. Most days I felt like that kid except the being a child genius part.
I spent most of ninth grade either in the library, off in some corner, or in the learning disorder classes. It was in the ninth grade people (a teacher) noticed I had a I wouldn’t say talent for writing but I needed to be creative so I could tune out the other kids. She let me use the classroom computer to write whatever I wanted to write.
In my ninth grade year my mom used to work at a football themed store downtown of the city we were living in. Every so often I would do little things around the shop for a little spending money.
They had me dust this or that shelf. They even had me build some touch lamps sometimes. I was the only one with small enough hands to put the glass pieces where they should go without breaking them.
One day I was doing one after another of the touch lamps and I mistakenly put the box knife in my jacket pocket. I had forgotten I had it in my pocket when I went to school that Monday. When I went to pull my hat out of my pocket the knife came out. I was suspended for three days because of a mistake.
To that school, they thought anyone in the learning disorder classes were nothing but trouble makers or delinquents. That is what they labeled us as at that school. Up until then I hardly ever got in trouble at school. Yeah, I might have been a smartmouth or said a joke every so often but I never really caused trouble.
That was another school I was happy to get out of at the end of the year. Soon after ninth grade ended we moved again to a different city in the same state.
Before you guys start thinking that I was running away from one school to the other it wasn’t like that at all. My mom and my step dad were trying to get stable work and a good life going for us. Which at that time was kinda hard to do.
I was supposed to start a high school on the North side of the city I lived in but they didn’t have learning disorder classes at that school. So I started at the West side school instead. I can’t tell you how many times I got lost in that school when I first started there. (Truth be told I got lost every first day of that school. It’s not my fault I had no sense of direction back then.) I was in the wrong gym class and everything was all kinds of just craziness.
They didn’t tell me that there was a gym class for the physically disabled kids or give me a map or anything. I spent three years in that school and it was fine. It wasn’t the best but it wasn’t the worst. It was just fine.
After a while going from one school to the next you start seeing the same faces, same crap but at a different school.
I did have trouble with one teacher for the three years I was at that school. We would go around and round about everything and of course there was this one kid who would watch the others and report back to her. Kinda reminded me of the kid from a cartoon I used to watch when I was a child. For you 90’s kids you would know what I am talking about. The cartoon character had a bit of a rat face and curly hair always tattling on a boy with a backward red baseball hat and his five friends.
At one point, the teacher tried to buy me off with candy bars for putting me in the wrong classes for me. See at this new school, we (the learning disorder kids) had case managers and she was mine. Case managers decided what classes you took and whatever else. But she put me in classes I had no business being in. She said it was to get me out of my comfort zone.
When I started that school I knew what classes I needed and wanted to take. (And none of them included fashion and design or cooking class.)
Didn’t matter to her.
In my junior year of high school I got awarded a month's worth of detention because I decided to write something for the school newspaper. I wrote an article talking about the learning disorder kids were treated for. I wrote and got it in the paper in time for anti-bullying week. I had the newspaper hold my name so no one would know it was me who wrote it. But truth be told it wasn’t hard to figure out who wrote it in the first place. I mean if you had a choice between the guy who won’t stop talking about airplanes or the girl in the back of the class writing away who would you pick? When my case manager read that she gave me detention for a month unless I wrote a retraction of what I said. She said what I wrote was nothing but lies. I never wrote a retraction or served those detentions. Last time I checked I might be labeled mentally disabled I still had the right to freedom of speech. Even though some teachers don’t agree with it.
My plans for my senior year were destroyed because of her. I planned to take the two classes I needed to get out of there in the mornings and leave to go to the library after lunch.
But nope, she called me a flight risk and said that people like me need to be watched all the time. So I was stuck there all senior year.
To make things worse, that year that school decided that the lower grades should have their own lunch and the upperclassmen could have an open campus. What is worse is that the learning disorder kids were put in freshmen lunch so we couldn't have open campus lunch.
In the case of the manager's words, it was to keep us safe and protected from the other kids. It was about control and nothing more than that. When it comes to teachers in the learning disorder department, look at how they are teaching their students to know what kind of educators they are. Always look at the bigger picture of things otherwise you miss something important.
Before I write this next part I have to say this about myself. I am the kind of person that you can say anything you want about me but the second you are disrespectful of my family or friends you can bet I’ll raise my voice or in this case fist at you. In my teen years I had an attitude problem. (Ok I still have the attitude I just now focus it in writing) Each February I kind of told everyone not to bug me or anything cause I would be in no mood for it. (February was the month I lost my dad and grandpa on my dad’s side.)
Everything was going ok for a couple weeks then half way through the month I realized I missed placing my personal notebook. The notebook I treated was like a diary. I thought I lost it in my room. No one stole it out of my backpack during study hall when I went to the bathroom. They read it all and used it against me. One morning I came in somewhat in a good mood, all set to go for the first hour and all that. I was standing there talking to one of my friends and the teacher’s pet came up to me and started asking me stuff I wrote about in my personal notebook. Little things like how my trips to the park were and how the new church I was going to was working out. Things like that. I was all set to walk away. I got maybe to the first class room of that hallway. (Just about ten steps away.) He said something that made me snap. He asked me “If your dad was still around would he die of shame of having a slut for a daughter?” I doubled back and well decked him. If I had more muscle I would have broken his nose. And just so you know I did get punished by the school for hitting another student. I got detention but so did he. Because he stole from me and provoked me into hitting him. I might not be very proud of my actions that day at all but you don’t insult someone’s dead father. That is just as wrong. What is the saying two wrongs don’t make a right? It didn’t make a right then again if I was more level headed like I am now no I would have still have decked him. And before you ask, he and I never became friends after that and probably never will.
See them at a lot of schools, they think either one of three things. One, we are a waste of space in their school. Two, We are nothing but wild creatures and should be under their thumbs. Or three, We are people and deserve to be treated as such.
I have been to many schools in my life and I have seen all three of these through the schools, some all at the same time. The schools that saw us as a waste of space or wild creatures never gave us the chance at all. They set the bar for our education so low a rat could trip over it. If they had raised that bar with each passing grade us learning disorder kids could reach it if we are provided with the correct tools and some support as well. If given the chance to learn more than half us kids in the special education classes would want to learn. It just takes a little patience and time.
When I finally graduated from high school, I could have done about ten backflips. I was so freaking happy. No one understands what the kids in learning disorder classes go through from other kids, from their teachers, or the schools in general but they act like they do. They see us and think oh they have it so easy they don’t have to learn trig or whatever the mainstream kids have to learn. Or they pity us because we can’t learn or grasp something quickly like other students.
I’m not here to talk for all learning disorder kids. I'm here to tell you what I have seen through the years from the schools I went to. We have it just as hard as any other student. It's odd for me to say this statement but a lot of the kids in the learning disorder classes are very smart. (Odd to anyone who doesn't understand how our minds really work.)
There were some kids that could tell you anything you ever wanted to know about airplanes and how they are built or how to mod out a game in a way that would work for you. So don’t ever think we aren’t smart in our own way.
Because you are reading a story by someone who has maybe a fifth grade reading level who was smart enough to get you to hear me out.
“Just because the cover is a little torn and worn , what the book contains is what matters to the reader.”
Family,Friends and other
I’m guessing I probably lost some of my readers because of what I said in the last chapter. You can either agree or disagree with what I said. This part of the story is going to be a bit harder for me to write because the people who have claimed to be my family and have the best idea of how I should live my life. Or people who have said that they were my friends when they were just using me.
Plus me writing about the people around me is hard because I’m not the most affectionate person on earth. I don’t always show how I feel about people until it’s too late. My grandma on my mom’s side jokes calling me a touch me not. Truth be told I’m surprised that I was even able to get close to the people I have over the years to call them friends. But then again the ones who got through the brick wall I put up are the ones who did the most damage to me.
I had some great friends growing up through the years. Two of them still stand out in my head to this day. I have already talked about them in one of my early chapters. I have had friends come and go but those two stood by me through so much. But before I talk about the other friends I've had, I have to talk about my family and how they have treated me. To a lot of people when they find out that you have disabilities they treat you differently because of them. One of the groups you think would treat you like you are normal would be your family right? Well that’s not the case with my family. Yeah there are some that treat me like i’m a person and a creative spirit or think i’m a goofball or a nerd.
My mom’s family treated me well like I was a person with thoughts and all that. There were some that treated me differently because of my learning disorders. My great uncle was one of them that treated me poorly because of my learning disorders. He stopped me from having any fun at all and said that people like me need to be shut away. I was at a family member’s house as a kid. This family member used to train horses for people with disabilities and she was going to let me ride a mini horse in the grass. I got the riding gear on and all that ready to go and my great uncle said that I couldn't ride the horse. “What if the horse gets spooked or something she could fall off the horse and get hurt. She can become more of a r word then she already is.” When he moved back to his town I wasn't sad to see him go at all. He had some very old fashioned ideas on how people like me should be treated.
The rest of my mom’s family were great. It was thanks to my crazy aunt I sometimes had a great style and in movies. I have two uncles, one into cars and the other into some heavy metal music. Both cool in their own ways. My grandma raised me off and on for five years and I learned a few things from her. (Like how to cheat at cards) Just a lot of little things I learned from each of them. A lot of the lessons might not have stuck with me through the years but they made sure of a few things. One my sister and I were being taken care of. Two, it's not what people say that matters, it's what they do to show their love. And three most important: don't ever ever piss off your southern grandmother because you will spend the next number of weeks doing any and all odd chores she can think of. (And man can she think of some odd household chores. Don’t believe me, feel free to ask my older sister.)
My dad’s family was pretty much i don’t know how to describe them other than not there. Not sure to this day was it because of my disabilities or the fact that they just wrote me off when I was seven years old. I didn’t hear from them or anything for nine years and it was a 16th birthday card from them. I still rarely talk to them on social media. It’s one of those you have to talk to them ever so often like a quick Hi or how are you just to keep face.
A number of years ago my sister and her family went down to Alabama for a week and I went along. I mostly went to properly say goodbye to my dad and granddad at the graveyard. (My grandpa passed away in 2005.) I was sitting in the living room of my dad’s mom’s house (man is that a mouth full to say) and she was talking to my cousin saying “I can’t believe that (name of my sister) brought her. I mean really what was she thinking?” I didn’t know who she was talking about at first. I thought she was maybe talking about someone differently all together. But then my dad’s mom was like “Bringing her into my house when she hasn’t even talked to us since her father died. I hope they leave early.” I should have known she was talking about me. For the rest of that trip I don't want to say i was cold towards my dad’s mom but you don’t sit there talk about someone like that when they are sitting not even a half foot from you. Not everyone in my dad’s family is like my dad’s mom at all. My cousins on that side are pretty cool. One of my older cousins tried to teach me to play softball and I think she got mad at one point asking why can’t I be right handed instead of left?
Cousins are like one of your first friends when you are super little just like siblings that go home at the end of the day. One of my cousins talks down to me like I am slower than a sail on a frozen sidewalk. Always calling me hun and sweets stuff like that. Pet names are fine to a point but when you are older then the person who calls you those names makes you feel like you should be using the bathroom in your pants. (Like an infant I mean.) A few of my uncles are decent people, a little odd but still good people at heart. I would say more about that side of the family but since I spent so little time with them it’s hard to find stuff to say.
I have a third family as well as my step dad’s family. They were the ones who welcomed my mom and I with open arms. They treated us like family like my dad’s family should have treated us even after he died. My step dad’s mom called me her granddaughter and his siblings called me their niece. I’m not going to say we sat round a campfire and sang she’ll be coming around the mountain. Because there were some fighting not a lot but some here and there through almost twenty years. They showed us respect and listened to us. One step cousin of mine thought he was all high and mighty a number of times until someone knocked him down a number of pegs. I am still convinced that he was dealing with some mental disorders that he didn’t dare to say he had. They also believed that unless they could see the disabilities themselves they didn’t exist.
They still treat us like family to this day even with my step dad being gone. (Died in 2021) They didn’t have to treat us like that for all they knew we were just some hitch hikers my step dad picked up in West Virginia in one of his travels as a vendor. I met the man I call my step dad when I was thirteen years old. and For nearly twenty years he treated my sister and I like his kids. He also treated my mom great and my niece and nephew like his own grandkids. I’m sure we got on his nerves at times but he never left he never said forget this shit and leave. My step dad might have been rough around the edges but if I’m being honest with you it’s what we needed. He did show he had a great heart at times but it’s thanks to my step dad I would still be stuck in some hole of a trailer in WV with my grandma on my mom’s side. He taught me if I want respect I have to earn it and also give respect. Also when a job needs to be done to get it done then I could play video games or whatever. I don’t think I will ever forget my step dad. He might not have been my blood but he was the only father figure I had for more than seven years. Even if we had some messed up years (the teenage years) we always tried to get along in some form. He also taught me not to feel ashamed for being a lefty when I would complain about it at times. See it’s not what you say it’s what you do. It’s how you show you care that matters. I know i’m getting off track a little but here is my point they didn’t see me as “Oh great we have a mentally disabled or physically disabled person in the family.” They simply saw me as a person. And that is all that people with disabilities want to be seen by their families and friends as just them with no scars or whatever.
The one person who ever treated me like the pain in the ass I am sure I am is my sister. I have been bugging this woman since day one. I was told that I kept following her around saying sissy all the time just driving her up a wall. Our mother dressed us up in the same outfits and all that. (Which is probably the highlight of my sister’s life.) When we moved to West Virginia our grandmother made her take me over to her friend’s house so I could meet kids my own age. She only took me a couple times after that I got my own friends. We did fight like normal sisters throughout the years on probably every topic there is. (Within reason) She also used to sit on me saying how lumpy the sofa was so normal sibling stuff.
I remember i was like 12 years old and she just got her new car (she was 16 going on 17) she woke me up at like seven am. We went to the mall and the museum. We had a great day. Sure there have been other great days too like this past year we went to the kingdom run by a mouse for a few days. It was just us no craziness of any kind unless you count the place we were vacationing at. Even through everything life has thrown at us (life has thrown really big softballs at us) we still found some time just being sisters.
Before I start talking about my friends I have to talk about my mother, another person I'm sure I have driven up a wall a number of times. Even when I didn’t mean to, I freaked her out when I was just a baby. My open heart surgery was supposed to last a good number of hours long and she was sitting in this little room watching on a tv. Like everything I do, it didn't go as planned. Out of nowhere after only a few hours the little tv went out. The doctors ran in and told her I was fine and that all I needed now was rest. Yeah I know a very mean trick I pulled on my mom. (Surprise she didn’t just put me up for adoption right there.) This woman has put up with a lot the last few decades so when she says the reason she has gray is because my sister and i well believe it. (To be fair I think it's an equal amount of who drove her up a wall more.) I know that a lot of people might have judged her for what she did when my sister and I were little. Just leaving my sister and i at our grandma’s and just taking off. I understand why she did it. She just lost my father and she needed time to gather herself and rebuild. I don’t know one hundred percent what she did during her time away from us but she always made sure we were taken care of. That is what counts the most.
I remember when we were living with her that short time in second/third grade we (mom and I ) stayed up almost every night and she helped me with my cursive writing (which I still suck at along with math.) She saw that I was falling behind in reading when I was in middle school and she made me read thirty minutes a day. She made sure I got the medical treatments I needed for my heart and my thyroid meds when I needed it. She might not be a mullet wearing hippie or the blue collar house semi house wife what she is; it is my mom who has stood in my corner when not a lot of people have. And I can tell you I didn’t make it easy on her either, not by a long shot. Still she calls me her kid with a smile.
I have had a lot of friends through the three different states i have lived in. (granted my first friends were my cousins) Only a handful sticks out in my mind. I already talked about two of them the first friends i made when i moved to West Virginia. I still talk to one of them to this day. The other friend i talked about earlier on died in 2016. But I still have him in my head at times being snarky as ever. (mostly when I write.)
My other friends I've had or had are probably some of the greatest people I know. Growing up in both worlds (mainstream and learning disorder) you meet a whole range of people and if you meet the right people in either group you might have someone in your corner for a lifetime. When I started the school I graduated from, I made a promise to myself that I would be a loner, that I would keep my head down and just get through school until either we moved again or until I graduated. That promise only lasted about five seconds. Out of nowhere this tall spiky blond hair girl came up to me in gym class and started talking about a band she loved like we have known each other since day one. I thought she was a crazy person and yet to this day we are still best friends.
Some of the most unlikely people become friends over the weirdest things. Growing up this boy would pick on me and just be a snothead but ever so often he was a good guy. When he had something to work on like a bike or something he was the happiest of kids. He and I became friends because we bonded over a teen drama on tv. We built a friendship on that. We might not talk about the show as much anymore but we still talk from time to time. I never thought he and i would be friends but I’m glad we did. In a way he taught me the lesson of not judging a book by the cover. (Even if that book cheated at hide and seek.) He is still a book worth knowing.
Some of the people who I call friends to this day are just as odd as I am. Believe it or not it’s hard for me to make friends partly because i used to move a lot growing up and back then the only friends i really had were the ones i made in books. I actually got into a certain book series growing up because that is what I saw other kids my age reading it and then I fell in love with the series. Truth be told, if it wasn’t for a certain book character with a scar on his forehead, I wouldn't have had any friends in middle school after I moved out of my grandma’s house. It made an ice breaker for me to talk to other kids my own age.
There is a very small group of people who I have called my friends and I'm not going to sit here and title them off for you. But from this small group of people who are my friends I have to tip my hat to them because if you can imagine being my friend comes with a lot of headaches and somewhat annoyances that you would get dealing with me. But with everything that is wrong with me physically and mentally I will do anything I can within my power to protect you. (Unless you are going against some flesh eating zombies then I'm faster than the fastest woman on earth.) My point is that I’m probably the most loyal friend you would have and it's hard to shake off once you get to know the real me. (If you don’t believe me go ask the spikey blond.)
If you are wondering what other is well it’s the people who did damage to me. See like any other person on the earth forever good person in my life there were ten that wanted to hurt me in some form. Not all of them knew that they were doing it until they noticed I've stopped talking to them. Even people with disabilities have limits of how much crap they will put up with. I know that a lot of people expect us to just sit there smiling and just take it. ( I know that at one point I was one of them.) But at some point we do say enough is enough that we are done. When we actually stand up for ourselves you act like we are the bad guy in the whole thing. Like we were the ones who did the hurting to start with. Being disabled is hard enough but being tiny and a girl is harder at times. Because most of the time people think I bring it on myself just for being female. Which in itself isn’t fair either being treated like that because I don't have the right body parts.
I have dealt with being treated differently since I was very young. One of the times I was being used and had rumors spread about me was in my seventh grade year. I was friends with a boy in that school and at that time I thought he was a good guy. He was somewhat good looking (as far as I remember he was good looking) and sweet. We would spend hours talking on the phone and just hanging out. It turns out that he was telling all his friends that he was scoring with me. That I was letting him do things to me under the gym bleachers. The only time he ever laid hands on me was to grab my butt one time and even then that didn’t feel right. The young man was kicked out of school for all the stuff he said he did to me or any other girl he said he did things with. I was called to the office of the principal and asked a bunch of questions did i do this with that boy stuff like that. I told her that I didn't even hold hands with him. After all that was said and done I was happy that we moved away from there. I got out of that school when I started to build the wall I have up now against the world because of that one person. No one should be made to feel unsafe no matter if they are disabled or abled. It was a school that was made for education not for rumors and bull shit.
There are also some people in the world who hurt people who have learning disorders without even meaning to. Like they mean well but they aren’t educated enough not to say what they say. I had a friend when I moved to the town I was living in for the rest of my schooling who didn’t know better. She would somewhat talk down to me and say things like “people with disabilities don’t understand the real meaning of love.” Just little things like that. If we don’t teach people how to treat us like people that we are then they will keep saying things like that girl did. How are we going to demand respect that we deserve when we don’t teach people around us to show us any? I have spent a lot of my time with both mainstream and learning disorder people throughout my life. And one group isn’t better than the other I have come to know. I’m not saying that all learning disorder people are down right cheerful or whatever (Even though that is what a lot of people think of us as.) Sometimes some of the two groups did come together and hung out but that was rare. And before you even think about it or say it, not every learning disabled person gets along with each other like any other faction we do fight among each other. We, like many main streamers, are just as human as anyone else in the world and we know what we are feeling when we feel it. (And that does include love.)
I have met all kinds of disabled people in my life and a lot of them that I know from my schooling have been open about their disabilities and some who aren’t. If someone came up to me and asked me about my scar or why my left eye wandered wherever it felt like I would tell them. I'd rather have people ask me what in the world is wrong with me then try to make up the reason why I have a huge scar running down my chest. I have heard a lot of reasons why I am this or why I have that. Some of the rumors are stupid and just plain funny, some are just made me think well. I wish I had thought of that myself for a story. I know I'm getting off track again. My point is if you want to know something about me or any disabled person ask them. Yeah some might not want to talk about it as i said but for me personally i want people to ask. I once met a little person in 2012 at a thrift store and I thought they were pretty cool. We got to know each other and I thought it was ok to ask them questions about their disability and they got all pissed off at me for asking .
I thought I was asking in a nice way what they go through with their disabilities but it seems that they didn’t want to talk about it. Some people like that person try not to have others zoom in that they have disabilities in which they could just say can you not ask me about my disabilities instead of blowing up at me. There is a right way to handle things and a wrong way and that person handled it the wrong way. I’m not saying that i’m the most graceful when it comes to social things myself at the best of times but if given the choice in the matter i would want people to know how to treat me from me not from some book they found on the net. You can’t read a book on how to treat people the right way either you know how or you don’t. Some can be taught, some can’t be taught. That might make me sound mean but if you really think about it’s the truth.
When I started the school I graduated from I met someone who I have referred to in poems as the curly hair blue eye man. He and I would hang out and talk about this or that. We were pretty decent friends for a long time. Yeah, we would fight here or there about stupid things. A few of his friends said that we should just get a room and get it over with. (Such a teenage thing to say to someone.) Years later he and I spent six hours talking about everything and nothing at the same time. You know one of those talks I’m talking about the one where you can say anything to the other person and it feels like you are on a level. When we ended the night talking he admitted that he had a crush on me for some odd reason.
We hung out in person off and on for a while and even kissed a few times. Fastward to 2015 and we reconnected and hung out again but it went further that time. And truth be told it was one of the rare times I felt that I was being cared for and loved more than any other guy who claimed to like me. I actually saw a future for him and I a number of times. When my step dad and mom found out about him they acted like I was a teenager misbehaving and I should be grounded. (I was in my twenties) I got it and I should have told my mom and step dad that we were hanging out talking and just being together but we didn’t. ( We made a mistake and I admit that.) But being with the curly hair blue eyed man felt like we were seamless, that we fit pretty well together, making each other laugh and just being ourselves. I thought he saw past the disabilities and for a time it was perfect as it could be. As soon as he found out that we couldn’t hang out anymore as friends with benefits, he pretty much dropped me as a friend all together just because we couldn’t keep doing what we were doing. I lost what I thought was a good friend because we made stupid mistake and did not tell my mom and step dad about us. He is another reason why I'm closed off to a point because the curly hair blue eye man was probably the only one I could just be me with flaws and scars all. No matter what I can never get that with anyone like that again.
Being friends with someone with learning disabilities is thought of as something easy. Like you can do anything to us and we would be grateful for it. A lot of people see us as all one disability. We are all the same. You can treat us all the same but we are all different. Not every person with a learning disability is just going to put up with the same thing the rail in and throw back out to sea. Sure there are some of us who just say that is how it is. Throughout my schooling and life I have been there myself and seen it first hand. As I said I don’t know who gets the worst abuse, the disabled or girls. As both I have to say neither is a walk in the park. Sometimes the two of them get combined in how I have been treated. It might have been my doing in picking the people i called friends but they also had a choice either to treat me the way they did or to grow up and treat me along with people like me like a human being. I know it’s a cliche’ but it only does take one person to treat someone the right way for the rest to fall in line.
I’m going to give you the short version of what happened between me and the pastor’s sons. (Because if I try to tell you guys everything we will all be here until we are all old and gray.) In 2007 I started going to a church and I met the brothers and I fell for the younger of the two of them. See that year I was going to start my senior year of high school and I was stressing out over everything that was going to happen in my last year of school. Will my plans work out? (It didn’t work out if you need to know more look at the last chapter)
All of it started with both of them (at different times I’m not that kind of girl) with a smile and a friendly chat. I thought they were good people because they were church kids. They were sons of a pastor who wouldn’t trust them right? (Yeah I should have walked away before I even said hi to them but I was 18 and a little stupid.) Before I go on you guys should know it’s going to be hard for me to write about this but I feel like I have to. No I’m not the hero or the villian (even though to them I’m the bad guy) I was just the mark they played with until they each in their own time got tired of me. Keep that in mind while reading this next part.
As I said I met the two brothers at a church and most church people are well sometimes stuck up and snobs even the teenagers. So when I started going to that church I thought I would do my time and be done with it. I’m not the little miss holly roller or team person. So when I saw they were somewhat nice I could let down my wall and just be me. These church people weren’t any different then the others I have met actually they were different because they let the brothers use me. Before all you church people get on my case I know that not all churches are like the ones I have been to. (So please do not throw pitchforks at me or torches.) I’ll tell you all they did to me. It’s a long crazy list spanning over a decade of turning me from the person I once was to the person I am now.
1.They lied more than however many times to their family and to me.
2. They asked for photos and videos of me (not in the right way)
3. The young brother chased me for over 13 years claiming he wanted to be with me and making plans with me to be together forever.
4. Threatened me on many things
5. Caused me to have anxiety and panic attacks for a long time
and the list keeps going
I know those are very big things to say about two people or should I say about a family? All that happened to me because they saw me as someone to play with. These brothers saw me and just thought well i don’t know what they were thinking because I don’t have that body part. If it seems a lot to you just think of all I went through with them. I sometimes still struggle with anxiety because of the damage they caused me. I’ll try to explain each of the five points I made the best I can.
The first point I made is that they lied to me and their family. When I said that I mean some pretty big lies, not little white ones that we used to get out of handing homework in during school. The older of the two told their family that I tried to take advantage of him in the back of a van. Just because I’m from the wrong side of the tracks or a trailer park doesn’t mean anything. His lie made no sense at all because I’m four foot eleven inches tall and I was 110 pounds at the time. He was a foot taller then I am and had like 90 pounds on me so who was going to try to take advantage of who? Yeah I made out with him at the park but he was the one who kept asking if I wanted to touch something of his. They lied to me saying how each of them liked me and wanted to be with me. ( At different times.) The older one played that game for a short time maybe a few times but he gave up because I kept telling him no. The younger of the two is the one who chased me for over 13 years. The younger of the two was like me. He was rarity like I am. I felt more connected to him than the other. I know it sounds like I was pulling each of them on a leash to a number of people but to me I was on the leash and they were pulling it making me go one way instead of the way they wanted. Instead of the way I wanted to go.
The last two points are hard to talk about without going into full story mode but I’m going to try to simplify it for you.
Seeing during those 13 years of it all it was a lot of craziness and yeah I somewhat brought it on myself for even getting involved with them in the first place.
There were a lot of breaks in between the whole thing but during those 13 years the green eye man and I got close, or so I thought. But he had, for lack of a better word, a wandering eye or whatever you would call it so he wasn't faithful to me or any girl he was with. And when I would question him on it (which at the time I thought I should be allowed to) he would threaten me by saying things like “If you were a guy I would deck you.” Just little things like that throughout the years.
And then he would be all sweet and nice, trying to make me laugh. It turns out he had bipolar disorder and more mood swings than a girl on her time of the month.
And no, I’m not making fun of people with bipolar disorder, I’m just saying how he was at times. What I am trying to say is that when he found out he had bipolar disorder he used it as an excuse by saying that he was an ass because of his bipolar disorder. He would use it as an excuse all the time which is wrong. I get that he couldn’t always control it but he could have learned to keep a level head when he had a manic episode. It shouldn’t have defined who he was at all.
Yeah, I just somewhat defended him for what he did. I just hate when people try to blame who they are on their disability because it makes the other billion people who have it look like he was.
The other person I got threats from was the sister of the green eye man and army man. Let’s call her pastor’s daughter to be well, nice. The problem with the whole thing with that family (not just a few members but the whole family) is that they thought they were entitled to be who they are.
They were raised in the limelight of crosses and all that stuff. They didn’t think much of me at all. They didn’t think I was good enough for either of their sons. (which nowadays, well I don’t think that they would be good enough for me either.) So when it was all starting to boil over to say the least, the pastor's daughter decided enough is enough and that she’d finally get rid of me in her own way. She waited for me to go home from the library one day.
I remember it so clearly it was February 2009, raining and cold, just nasty weather.
She started telling me to stay away from her brothers and that I have been stalking them, down right harassing them and I wouldn’t take no for an answer, I just kept on bugging them and If I kept it up then she would tell my mother and step dad. And if I didn’t listen to them about it then she’d call the cops on me.
That freaked me out for a long time. She put the fear of nothing in me. This woman caused me to have panic attacks for nine months on empty threats.
She never intended to follow through with them. I couldn’t sleep or really eat for nine months. Every time I heard a cop go by (we lived in a big city in the bad part of the city so we heard cops a lot) I would have chest pains. I still have those from time to time due to stress and anxiety thanks to that one moment thanks to them should I say. I have the fear that the green eye man will one day try to come back and do it all over again.
As much as I have tried to move on from it all, that fear and those memories are some of the most wired in my mind. Yeah there are some good moments like a first kiss behind the church on the little bench. But it’s the ones that caused the most damage that stand out.
I wrote this part because I wanted to show you how you should and shouldn’t treat people with disabilities. (Which you should have learned in first grade.) Plus I wanted to show the others that caused damage to me that I could have thrown them each under an 18 wheeler and smashed them into pancakes. But I didn't, at least I tried not to, which was hard to do. After all these years of being who I am and people knowing how I am they still see me and think they can try to push me over. I hope this makes them think twice about it. I will push back. I might not be the smartest person by any means at all but don’t ever see me as stupid because thanks to the people who did the damage to me I learned to read how people really are. That is one lesson I will never forget even if I almost fail out of some of my classes.
Not every person with disabilities will push back against people who see them as easy targets. And I’m not trying to be the voice of the people who have been taken advantage of.
Because there are more than my story, there are so many more out there. I guess what I am trying to say is please treat people who have disabilities with respect and decency because they are people too and you bet your ass they deserve it.
“In spite of everything, I still believe that people are really good at heart.” _Anne Frank
Work training/work
Let me start off by saying that my work experience is somewhat lacking to a point. I also want to give you a little bit of a history lesson of how the people who have learning disorders were treated in the workforce. They used to start them off young when they knew that the kid had a learning disorder. They would have these kids learn a trait or a skill like janitor or factory work that was like the 1930’s or 40’s I believe. Well the high school I graduated from took that and somewhat mordinze it to a point.
They would have us to janitor work around the school like picking up the trash or sweeping the school. Or they would have us go to old folks homes and clean there. Simple jobs like running the vacuum, wiping down tables, stuff like that. They thought since we were so mentally handicap that we wouldn’t be fit for anything else. (Such as being a writer or a pilot or a game creator.) They didn’t believe we didn’t have the brains to do anything but picking up the trash. Before i go on i have to say that janitor work in a nobel work for people who decided to do that job. There is nothing wrong with it. But when you have your heart set on something else you don’t want to be dry mopping the school while other kids stand there laughing at you. To a lot of people who have learning disorders they tend to be go getters as in “Go get this full deep half pan and a full bag of potatoes.” And a lot of us just settle for hey that is how i am going to get extra cash or whatever.
The kids in the work training program didn’t get paid money, we were paid with fun little things like trips to the park or ice rink. Sometimes we would go down to the ice cream shop which was about ten blocks from the high school. Which is fine and fun for us to do instead of doing math or whatever. For me it was a bit harder to do those trips because I was in both mainstream and learning disorder classes so I had to get a say from my mainstream teachers. (which to tell the truth they would just sign off just to get rid of me for the day.) The only time I had a problem at work training was one February where I asked for the month off of work training. Seeing that month sucks for me. I lost both my dad and granddad from my father’s side that month. (Nine years apart my dad in 1996 and my granddad in 2005) I tend to try to remember them both that month because the days they pass are so close. I was still put on work training for the month on sweeper duty and the teacher was saying you missed this spot you missed that spot. (this was before I got glasses) I threw the broom down and said “If you can see every speck of dust on the floor then you f***ing sweep it.” I grabbed my bag and walked off to the school library.
It’s one thing to do what I did to the teacher but to swear at her was wrong and I knew that but the fact that I asked to be off work training for the month then rejected. To me it was like they didn’t care that I just needed some me time to remember my father and granddad. As I said even the learning disorder/physical disabled people have their limits on how much they will put up with. I have learned how to tame my temper over the years with workplaces but when the employer isn’t even willing to work with me because I might need a little break every so often that is a big no no. I also worked a short time at a thrift store so I could get my adult disability benefits. And it was fine but they didn’t really give me clear information of what I should be doing. They told me to walk around and clean up the walkways like put the toys away stuff like that. It wasn’t all bad to tell the truth I did learn the sign language word for spider.
The only time I had a problem with the thrift store was with a couple of people. They were looking at a pull out sofa bed and asked to have the bed pulled out and all that which is fine. Sure I’ll do that for them no problem. But they had me open and close to them a few times so they could see how easy it was. Then there came the price, which was 150 dollars for the sofa bed. (It was pretty much new that someone didn’t like it.) They said “Never mind that is too much. Who put the price on it? The R words that run the place.” That was uncalled for just wrong. I get they wanted to see it and all that and yeah the price was up there sure. But that doesn’t excuse the rude behavior at all. I don’t think they ever came back to shop there. Don’t get me wrong I’m a team player. A good part of the time I let a lot roll off my back to a point but just being nasty over the price of a sofa bed there is no reason for it.
If you don’t put faith or support us in the workforce then we won’t rise to the full potential we might have. I used to help my mom at one of her jobs by doing odd little things. (mostly doing dishes for the place and clearing tables.) And yeah I would have little things given to me as a thank you for helping out here and there. But most of the time I would just sit there and chill out writing or knitting things like that. But even just helping out there I was somewhat treated like well it was a mixed bag. Because it was a family owned place you never know what you may get day to day. If the other disabled person wasn’t doing his job (He mostly hid in the men’s room playing with his phone. Don’t ask.) I stepped in and his jobs were so easy it was mostly get this or get that or to make the batter for the fish fry not like they wanted us to retile the roof. (Not that I would do that because I am afraid of heights.) It got to where they relied on me more than him over the years I was helping out. Even my step dad tried to get the guy to do his job once by saying “Come on Jesse is doing more than you do and she is a girl with a heart defect.”
I learned how to make myself food with a deep fryer and flat top grill when I would help out there. I also learned how to train the teenagers who run the dishwasher how to put in a chafing dish the right way or a dough tray. Just little hacks you would learn at a restaurant or bar. I also taught them how to pack a bag of things for a catering job depending on the job that they are having. Just little things you learn as you go.
One teenager I remember trying to teach wasn’t having it at all. She and I would buttheads all the time. (Like we were both half trying to fight over the kill.) She would tell the other teenagers she was the head dishwasher and I was a pee on or that I was just an R word. One day I challenged her by saying fine miss head dishwasher. How do you put the chafer dish all in one go into the dishwasher?" She couldn’t get the whole thing in the dishwasher at all. (Our dishwasher was kinda small so you had to somewhat wedge things in like you are pairilo parking a car.) I told her next time you start running your mouth to everyone around here you better know what you are saying before the R word shows you up again.
Each workplace I have either helped out or worked at has taught me how people see people like me. They see us as lower than low a lot of the time. Don’t get me wrong I did have it easier then most of the workers when it came to certain jobs. I know that some of the disabilities can make it harder for people to work nine to five or 16 hour days with little breaks. If you put the job to the person like if someone likes a certain thing to do maybe have them do the job in that field. Because until you as an employer show us respect or learn to talk to us in the right tone of voice. (I’ve had that happen too.) Then we won’t work for you chances are we will shut down a hundred percent of the time. And it’s not just the disabled who should have that respect either, it's everyone doesn’t matter who they are.
And I have to say this last part to the disabled people who have to work for a living. If your boss or co workers are treating your like crap please speak up about it. Say something about it. It’s not all one sided , it’s a two way street. We can’t expect things to get better for us working in places if we don’t say something about it. I’m sorry to say this but until we actually take action to do something to make it better for ourselves we have no reason to sit there and bitch about this or that. That is one other things I had to learn over the years not just working but at school as well. Don’t let others get you down in the world no matter what you are doing in it. Just try to do what you are asked to do (within reason) and if you can’t do it for some reason tell them. Don’t be afraid to speak up for your rights in the workforce or in the world. I ask some of the main streamers too please be patient with us and try not to talk down to us. If we come to you asking how to do something explain to us in a way we would understand. Just give us the chance to show you what we can do because you would be surprised what we are truly capable of.
How the world/society sees us
Before I even start this part, really I have to say that I’m not the best at picking up social cues. I'm not sure if it’s my learning disorders or just a family trait. It’s not for a lack of trying either. I try to read the room but I tend to say stupid things. (Sometimes out loud) And a lot of the time, people just smile and walk away, they don’t say anything about it. (At least not to where I can hear it.)
We as the learning disabled or physically disabled aren’t trying to make you feel awkward or anything like that, we just want people to see us as the humans we are.
Through the years I’ve seen how people see the disabled in the world like they understand what we have to go through.
Most of the time people think if they know a little bit about a disability then they know about all of them. Or if one person has the same type of disability and they see someone with the same type then, oh they must have the same thing one hundred percent. Not every disability is the same thing. And not every person handles their disability the same way as Fredrick from ten years ago who was your neighbor’s dog's eighth cousin eight times removed.
This past week alone, I met someone in my town that is blind and he is a pretty cool dude. He and his wife were going to go out and about and they had to go down some stairs. I was all set to let him go first down the stairs so he could hold onto the railing. Nope, he just pretty much walked down the stairs like they were nothing. He got down the stairs a lot faster than I did. It all has to do with what we are comfortable with. He is so used to those stairs that he zoomed right down them. As I said, every person who has disabilities isn't the same way with them. I’m still not comfortable with mine and I’m 34. (Chances are I won’t get used to them at all until I’m 90.)
Moving from place to place over the years, it’s hard to get to that level of ok, I can do this.
Trying to fit in this world is hard enough most of the time and then you add in all of these other hurdles that you have to get over.
Lucky for me, a lot of the time I had people looking out for me in some shape or form. But not everyone has that at all. (For those who backed me up when I ran my mouth over the years I say thank you.)
When I go to a new place that I don’t know anything about I try to not say much or just go off in a corner and read for a while. But there are other disabled people in the world who don’t know how to act in public places and they get treated like crap. I have seen it from both the learning disorder side and the mainstream side. And I have to say a lot of the time I would rather spend time with people with learning disorders.
The other thing that people tend to do with the mentally disabled is talk down to them like they are still crapping their pants.
I understand that you think that is how you should talk to someone like that. That is how you might have been taught how to talk to us like that. But unless we are actually toddlers just learning how to walk, don't talk to us like that. Talk to us like we are the age that we are.
There is a difference between talking nicely to us and talking down to us. A lot of the time people get it wrong and when we try to correct them, they say “How do you know how to talk to someone like you? Do you have a degree in it?” I don’t need a degree on how to talk to someone but maybe you need to pull your head out of some crap you read on the internet.
One thing I’m not a big fan of is when people beat around the bush. They won’t tell me what they are actually thinking. They just put on smiles and fake happy faces. Like if I’m bugging you or whatever just tell me to piss off.(And I mean tell me not slam the door in my face cause that is just bad manners.) You don’t have to use kid gloves with me. I get that I can be sensitive to things that are part of my learning disabilities but I’m also a grown ass adult and treat me like it. Talk to me like an adult. (And I don’t mean swear at me unless I’m being a little snothead then go ahead. Just remember there is a fine line to it.) I also understand that you are trying to spare my feels as well cause you think I’m going to cry or break down. Here is the thing I might be whatever but I mature enough to understand stuff. (I’m thirty-five years old not five years.) I have been trying to work on my boundaries for a while and I have to rely on others to help me with it cause that part of my brain doesn’t work. It’s like I’m that pesky bug trying to bite you. If need be just put me at arms length and put your hand on my forehead then walk me backwards to the door. (I’m sure my sister will be more than happy to give you lessons on how to do that.) Or treat me like that nerdy kid with my pants up to my armpits with the snort laugh that kind of worked for that family. My point is if I don’t know my boundaries how am I to grow as a person? How am I to learn something if someone won’t help to teach me that I’m a pain in the ass?
Most of the places I’ve been to out in public have treated me pretty fair (at least to my face.) Then you have these other places like churches treating me like I wasn’t good enough to even sit in there. I grew up being somewhat forced to go to church. I even had someone tell me that I best be thankful to God because he let me live 34 years ago and if I can't spare one day a week to thank him then I best get my affairs in order. What kind of crap is that?
Let me set some stuff straight here. I’m not a believer in the big bad all powerful person upstairs. To me the bible is just another book on the shelf filled with stories. The word Christian is just a word for people to use to bully others, to get their way, or to get away with something. (That has been my experience in the past.)
Because ever since I was old enough to talk, I have had this idealism or that idealism stuff shoved down my throat.(Or into my head)
I know I got off track here but it really pisses me off when people say that I should be thankful to a figment of someone’s imagination so many years ago. I will say I am thankful for the people who did my open heart surgery all those years ago.
I know I might have lost a lot of readers by saying what I just said but it’s no one’s place to force their ideas on me or anyone else for that matter.
I know that I got off track with that rant but to a lot of people with disabilities we get treated like that a lot of the time. We are somewhat forced to be just one way in the world. And it seems people get thrown off if we act like proper people in the world. Yeah, some of us sometimes go off the walls, misbehaving by screaming at others or just being plain nasty. (A lot of people with severe mental disorders just can’t help how they act in public. Please try to not yell or raise your voice at them. Try to be calm with them.)
How are we to know how to act if you don’t give us the tools to be anything then the status whatever when it comes to learning disabled people?
The people who get picked on a lot of the time in the world are the down syndrome people and the ones with autism. Like you expect them to fail right out of the gate so you don’t teach them language or anything. A good percent of the world says “Oh how sad, they are mentally messed up. But some of the brightest minds have learning disorders and disabilities. And if you keep forcing your idealism of how low of a bar you set for them how will they ever learn how to rise above it? I’m not a person with down syndrome or autism but I went to school with a couple of them. Just like the rest of us, they believe they deserve to be heard, not just listened to and thrown off to the side.
My point in this part is that the world still somewhat sees disabled equals bad when they find out that their child is going to have a disability, they end the pregnancy. Like they don’t want to be responsible for the 18 years of the kid’s life. (Sometimes it’s a life long contract going past the 18 years mark.)
Instead of the world seeing us as just this sad thing, how about taking the time to get to know us on a personal level? For all you know, you could make a life long friend. As for the people who can’t control how they act in the world, how about stepping back and trying to talk to them instead of yelling at them? Take your time with them.
It’s not just on the tv I have seen this happen. I have seen it in this world and it’s not right at all. And how about you learn about us before you judge just by looking at us? That would be nice too.
My last point in this part is that the world may only see us as damaged or broken, low test scores or whatever but we are still people, you just have to give us a chance to show the world who we are in our hearts.
The medical side of it all
You guys have probably guessed that I have gone through a lot of medical stuff since day one.
A ballooning at four days old, the major surgery at six months old, getting my blood taken for my hypothyroidism every (once was six months) year, and two types of therapy.
Having all these things done along with tests on my heart like echos and monitors are just so (well I once said was annoying) normal to me. To anyone else, it’s nerve wracking like what is wrong now?
To me I’m like ok let’s get this over with, I have to get home to watch my show by six. It's like any other day for me.
Dealing with what I have from my point of view it’s like I’m an under five-foot pincushion getting poked and studied like an alien. (One of my friends calls me about a science experiment gone wrong. He was joking. I think.)
When I have to do a blood test for my thyroid meds I have to drink water for days (I have small veins.) so they can get all the blood they want to test my levels.
Would it be so inconvenient if they have my blood test say around noon so that way my blood would be awake?
That way I’m nicer too, after my coffee and some food unless the nurses in the labs love seeing half awake zombies first thing in the morning. (Like at seven am.)
As for the therapy I had, it was physical therapy and speech therapy as I said in the school part of the story.
My balance is off because of my c.p (cerebral palsy) and I sometimes run into things like walls and trip over my two left feet. I took seven years of physical therapy trying to correct the problem I was having with my balance. I pretty much looked like you are thinking, a tiny drunk person on the side of the playground trying to do the heel to toe walk while touching my nose.
(Yeah I actually had to do that like I was pulled over for drunk driving.)
It also took a good long while to learn to ride a bike because of my balance issues. For me to ride a bike I need to feel safe enough to ride. I need to have both feet flat on the ground before I kick off. So mountain bikes are out of the question for me. (Unless I'm on stilts.)
I recently learned that thanks to my first grade teacher I was put in speech therapy to help with my motor skills and learning how to slow down somewhat and pronounce words the right way.
“Jessica has a strong speech; she just needs to learn to say stuff the right way.”
I couldn’t say my r words the right way. Which made my guy best friend laugh because sometimes I couldn't say his name the right way.
(That is when I just called him by his first name to tick him off.)
All those years in and out of both sets of therapy kinda helped me to a point. I still have problems walking at times around town or just around my house. I tend to fall a lot and get banged up. (I mostly blame the cats for me tripping.)
It seems to me that even though my speech did get better (unless I’m really hyper and had a bunch of coffee) and my walking/balance improved, it seems to me that they could have done so much more.
I know that they say the kids in the schools in West Virginia are falling through the cracks, it feels like the kids with the disabilities just fall into a hole and no one helps them out. They will do just the basics they're just like okay “You’ll have therapy twice a week for this amount of time.”
How about giving them a little more time in the classroom? It’s not like we are asking for …… time. Just a little more.
As I said at the start of this whole thing, I’m a rarity. I was born with a rare heart defect where I wasn't getting air into my heart. If you don’t have air going into the heart it can’t pump or oxygenate the blood so it flows through the body correctly.
I had a balloon when I was four days old. In my mind it sounds like they put a sirang of air right into my heart so it looked like a balloon. That worked but it was a temporary fix to the bigger problem. I had a bypass of the great arteries when I was six months old. That surgery worked. It's thanks to that surgery and the kickass doctors I’m still here bugging the hell out of my family and friends.(And some others as well.)
I know I haven't said any names, just titles so far but right now I'm going to name a group of doctors who gave me the scar that makes every guy jealous. The C.H.S.S Data center. (Congenital Heart Surgical Society) Each year on the day I had the life saving surgery I thank them for doing what they did.
Living with a heart problem, (any heart problem) you get so many limits on what you can and can’t do. (The mile run in the gym is out of the question.) But I have learned to work around them to do the stuff that I do.
I live through my characters somewhat because they don’t have health problems. So I get to do stuff in my own way. If I want to actually run (which will never happen) I’ll have one of my characters run for me. I found a way around it. I modified my own life so I can live a life.
The only time I have feared for my heart health was in grade ten. We were playing soccer inside. I was a goalie and a girl ran towards me with the ball and she missed the ball. She kicked me right in the chest instead and I couldn’t breathe at all.
She could have kicked the stent in my heart and knocked it out of place. (I shouldn’t have even been playing.)
I had made it to the lunch room when the gym teacher told me to go to the health office and another student saw me just sitting there trying to get my breath again.
He helped me to the health office and they called my mom. I had a good sized bruise on my chest for a long time. It was very scary for me at that time. All I could think was “Great. I just started this school and it’s trying to kill me!! I had a short and somewhat pointed life.” (I was very dramatic back then. But then again who isn’t dramatic during their teen years?)
I just remember the pain and fear of that day, of just not being able to really move without needing a ten minute break.
Having such a rare thing in the first place is scary enough because not a lot of people know how to treat you medically but to have that happen, you spaz out.
As I said, I had to learn what I could and couldn’t do at a young age. I can do a lot of things but I also know when I’m just done, I take breaks like just sitting around my house watching tv or playing video games. (Those days are few in between sometimes)
I know what I am capable of but I know that I am also my father’s daughter and like him, I tend to over extend myself at times trying to get everything done in one day. (That man was always on the go go go.)
One thing I have always hated about having a heart defect is that people tend to treat you like a china doll. Like you are very breakable. Or they think that your heart defect is the same as their neighbor’s twentieth dog’s first owner’s.
Not every disability is the same for everyone. Like all the others, heart defects have a range from 0-10. Zero is like a murmur (Those go away on their own after a time.) Then you better have a heart defibrillator on hand just in case.
When people try to treat me like a doll that could be broken I roll my eyes at them .
The way I see it, if I have made it this far after everything I’m pretty much like tupperware, I might melt some in hot weather but I'm durable.
Someone asked me once if I'll ever need a replacement for the stent in my heart, maybe in the future I will. I told her that I'd rather not think about it.
Because if I actually think about it then I’ll get worried about where I might need one because of the stress put on my heart. There is still so much to learn about the human heart and how it reacts to some things.
I sometimes feel like I have so many restrictions of what I can and can’t do with the defect I have but in a way if I didn’t have them then I wouldn't have found I had this talent for writing.
(Sure, my best friend helped me find it but the boy had to get me to sit still long enough to help me.)
Just because you have physical limitations it doesn't mean the rest of your life has to have limits too.
Having a heart defect isn’t all bad, yeah there are bad parts like what I said before but there are good parts as I said too.
The fun part for me anyway, is when I go to the heart doc and I sign in and wait (ok not the waiting part.) and when they call my name they expect some old person to come to them in a walker or something, not this short little stack of pancakes who is probably (maybe) older than they are but younger than they thought I was going to be.
The looks I get are just funny for me. I know that makes me so immature sounding right there but think about it and see if you don’t laugh at it.
I sometimes have to show them a little of my scar (it starts right between my collar bones) to prove to them I have a heart problem. Like unless it’s right in front of them (not just on paper) they don’t believe it.
Like why else would I be there on a Friday afternoon waiting close to an hour for a five minute visit from the heart doc? To watch some crappy talk shows? Yeah right, come on now. I would rather be searching for books at the library.
The last thing I want to talk about is my meds, both sets of them. I have had hypothyroidism since I was three months old.
It’s just another annoyance I have to deal with everyday. It’s one of the lesser things but it’s still something. If you don’t know what hypothyroidism is, well let me explain it to you so you understand.
Picture two students in school. One has Hyperthyroidism and the other Hypothyroidism. The Hyper is a straight A student into everything and just always doing something. The hypo is just there. It might raise its hand every so often (mostly to get a drink of water or go to the bathroom). It's the C student of C students. I hope that makes sense to you all.
It comes with some challenges like always being zonked out and always needing a drink of water or soda. It also takes longer to heal after I get scratched by the cats.(Or falling down because the sidewalks of the town are very uneven.)
One time my hypothyroidism got me sent to student services. (That damn gland, getting me into trouble.)
I was in gym class in 11th grade doing sit ups. I only got to four and then I passed out. The gym teacher came over and tapped me with her foot to wake me up and then asked me why I was sleeping. I said “The floor looked like it needed cuddles so I gave it some.” I was sent to student services for that. (mostly for being a smartass.)
It took my doctor until after I graduated from high school to figure out that my meds were set too high. I have to say this to the doctors out there. If someone you are treating for something tells you something is off then talk to them about it. Don’t just brush it off like it’s nothing.
My doctor back then would brush it off like I had gone crazy or like I didn’t know anything about my meds. Get tests done and if you can’t read them then have someone else read them for you.
Because it could help you and the person you are treating. Don’t say “Oh you are just being lazy or let’s run this test when there is no reason to.” Talk to them. Trust me, it’s less of a headache than ordering blood test after blood test and treating them like a human pincushion. (Sorry I had to spell that out for some doctors out there.)
I also take medicine for the dentist. It’s amoxicillin, it's like a protector in a way. I have to take four doses of amoxicillin each time I go to the dentist. When I was a kid, it was the bubble gum flavored liquid stuff that was ok back then. But now I have these huge pills that I can’t chew at all.
I know I'm a grown adult but sometimes after the dentist (a filling or a tooth pulling) makes it hard to take those pills afterwards. (especially with a mouth full of gozze.)
Maybe depending on the dentist you visit they can either do dissolvables or the liquid meds to that dosage. It would help a lot for those who have to have dental surgeries.
The amoxicillin protects my heart from infections. That way if the dentist cuts my mouth by mistake or whatever and I get an infection in my mouth it won’t go to my heart and cause problems.
Taking the meds I have to take isn't so bad, it could be worse. I could have more pills than any drug store in America in my medicine cabinet.
I know that a lot of the time people believe that the ones who have disabilities are faking it to get drugs or sympathy or create drama.
That is somewhat true, some of the people in the world do that but a good part of the time we aren’t faking it. It’s hard to fake disabilities. (Yeah there are some actors in the world who play disabled people on tv or the movies.)
But for the people who actually have disabilities, we have to jump through like twenty five hoops to even get someone to see that we are really disabled.
Sometimes even more if our disabilities are mental, not just physical. It’s because of the people who have scammed and treated the disability offices like they were just toys.
We shouldn’t have to fight to have the medical help that we need even if it’s just seeing a doctor or a shrink.
I have seen how some doctors treat the disabled so far. I have gotten lucky but not everyone has a team of doctors to come and help them. I am what people say is blessed to have the medical help that I have had since day one.
I think every disabled person should be able to have that as well. But it’s the real world and a lot of people who are disabled are not taken care of like they should be.
We shouldn’t have to show our scars physically or mentally to be allowed the medical services that we have the right to just like everyone else.
Hobbies and blowing off steam
Like everyone else, the disabled community have hobbies and just like to chill out at times. They are gamers, people who love airplanes, and some even love horror films. We are just like everyone else when it comes to a lot of things.
I myself love to jump on my bike (when I had a bike for two weeks) and just take off riding around my town or go to the library to find a good book. I also knit stuff like bags, hats and stuff. The biggest thing I have knitted so far is a five foot blanket. (I have made six of those) I had to quit knitting recently because it started to hurt my hands.
I also, as you can see, write poems and short stories. Plus I love playing video games. I also take photos of nature at times.
We blow off steam like everyone else. Yeah, we might have to modify the way we blow off steam at times but you know what, we love to just chill out and be able to hang out.
To be a normal person for like five minutes to forget our disabilities and kick back talking about the latest football game or whatever, that means a lot to us.
I just got this new bike the other day and I spent the day riding around and I felt so free, more free than I have felt in a long time. (Again I only had the bike for a very short two weeks.) I went from being the slowest person on earth to maybe the fastest (maybe at least on a bike.)
I know a lot of people see the physically disabled or mentally disordered and think what do you need to blow off steam about? How about all the times mainstreamers made fun of us because of our disabilities? All the times we have tried to fit in to be told to bug off. Just because you can’t understand us it doesn’t mean we don’t have the right to just be human. As I said a while back, I started writing out of anger because I was being made fun of.
This right here is me blowing off steam in a positive way. If my best friend didn’t help me that day I would still be kicking that dresser out of anger.
I am going to ask some of the mainstreamers out there right now. I’m going to ask you to take the time and maybe ask someone who is disabled about what their hobbies are. Bring us into your world a little and we will bring you into our world some. Clear that line that keeps us apart.
We might have the same hobbies you guys have. We might even know a different way to love that hobby.
Us showing you guys our hobbies from a different light is pretty cool. It’s like seeing a photo in a different way. You might just like the way we do our hobbies better in the end.
You just have to ask us about them and see the big smiles on our faces when we start explaining them. It might even surprise you in the end that we even geek out over the newest series of movies that are filled with space travel.
A little more about health of the mental kind
I know that I have already talked about health and medical stuff. But I would like to talk about mental health. Just to touch on it a little bit. It’s not just about learning things in school or trying to, should I say. Sometimes when we don't get or understand things for the hundredth time we sometimes have mental breakdowns. (I have dealt with those from time to time.) Sometimes it takes us a while to bounce back or even just a few minutes. (It sometimes take me days to get back to “normal.”)
Give us that time to come back together.
Along with having issues of breaking down and just trying to learn basic algebra (which I still don’t get to this day) I also suffer from anxiety which I explained in the family, friends, and others part of this story. And that stops me from trusting people a lot of the time.
I can count a small group of people who I actually trust on one hand alone and maybe have a couple fingers left over. It takes a lot for me to get a connection with new people at times. Because the anxiety part is whispering in my ear “what if this is the person who puts you back in the dark place? They might be all smiles now but that could be a trap.”
It stops you from having a life at times in so many ways. I'll give you an example of what I mean. This past summer I have had and lost a bike and I spent the better part of summer training to save up for a brand new one.
Long story short, the store I went to was out of the bikes for my size. So one of the people in town offered to take me to a town to get me a bike. Both my anxiety and Meredith said no way in hell.
It’s not like he's a bad person, he isn’t. But I told him thanks but no thanks. Not that I wasn't grateful for the offer, but the anxiety said I shouldn't trust the guy.
Sometimes anxiety can be a good thing to have, like if you meet someone online and get a feeling something is off. (With all these scammers around you never know)
It has saved me a good few times. It could be your best friend or your worst enemy. It depends on the day and what you are doing. (For me the anxiety wins like 95% of the time.)
As I said, I have been dealing with this for over 14 years now. It was awful at the start of it and I still have flare ups.
I don’t even like when others touch my phone or laptop unless I'm right there watching them. (not that I have bad things on them.) It causes my fingers or knees to twitch or my heart would race for no reason.
I guess my main point to this very long P.S is that if you see someone struggling with some kind of mental problem see if you can help them if possible.
But not everyone wants the help. In that case, I guess I have to say let them be. You can’t really force anyone to get help when they don’t want it. I’ve been there too.
I just want people to be mindful of how they act and what they say around people with mental disabilities. Because no one really knows what they have going on in their head or their heart for that matter.
How to remember people
As you guys know, I have lost a great deal of people in my life, either they passed away or they choose to just stop being friends with me. We as people have many ways to think of that person. We get tattoos or write about them or whatever. What I do for the people who have passed away is I either watch their favorite show/movie or I listen to their favorite music. I do things that they liked to do. For two of the people I have lost I have keychains made to have them whenever I go someplace.
For the people who are still alive and just picked to leave my company, yeah I remember them too. But depending on how they decided to leave our friendship is how I remember them but I'm not saying that there weren't good memories as well.
Recently I have been thinking about the Pastor’s son, (the younger one). I don't know why he has been creeping in my head but he has. He and I had good memories as well as the ones I talked about in the family, friends and others chapter.
The reason why he is still with me after all this time is because he was my first love, that will never change. It’s what he chose to do with that love I gave him is the heartbreaking part of it all.
In my younger days, remembering people wasn’t important to me at all because in my mind I thought they would always be there. Like I could count on them being there all the time. But now that I am older I know that is not the case. As an example, my cousin on my dad’s side and I always thought our grandmother would outlive us all out of spite. Like the end of the world would come and she would still be standing. Like the cockroach of humans if you will.
Well that wasn’t the case for our dads’s mom. She passed away while I was on vacation. My first thought was, well now I am free to use the McDonald name without her trying to claim fame for being my grandmother. I know that sounds selfish, but when you ignore someone from age seven and on you can’t claim them as family just because they did something with their lives. One thought I will remember from her is to be ruthless when I need to be. To be headstrong when need be, and always have the best snacks in the cabinet while on an all night writing frenzy.
Certain people come into our lives and make impacts on them in some way and it’s what we do with it that says a lot about who we are. They can either help us become great people or tear us down to dust.
I know I’m getting off track here. But I have a point to it. It’s how those people treated us is how we will remember them. Like I will forever remember the people who have both built me up and tore me down.
One teacher I had for three years in high school lived to tell me that I will be nothing but a waste of space. She would take my notebooks away and toss them in the trash. But I kept at it; I kept writing, I kept creating stories and poems. (Much to her displeasure during her class time.) She might have torn me down a number of times but it was my characters who built me back up again.
I found the best way to remember people is through writing, using them as characters or whatever. If you look closely at my stories, you will see the people in my life in my stories. My memories are scattered throughout both my series, you just have to know where to look.
“We have a choice in which way to remember people either the heroes or villains; it's all in how we see them in our hearts.” _Me
The Reason why I wrote this
Throughout writing this, I have learned a great deal about myself and some other disabled people. We sometimes are put in the shadows. To where if we aren’t seen then we aren’t really there.
In the old days way back when, people like the physically or mentally disabled would be locked away. To pretend that we weren’t even members of your family.
Sometimes it feels like we haven’t really moved past that. Yeah we have come out of the shadows to be treated almost like we're invisible to others.
I started writing this so one, people will know who I am as a person, the writer behind the keyboard if you will. And two, for people to see the disabled in any form can do anything. Yeah we have to try a bit harder to do something a mainstreamer can do in five minutes but it doesn’t mean the item we fixed will just fall apart in five minutes. (Unless it’s me who builds it might want to give it an extra five years.)
When I started writing this in 2022 it was right after my aunt’s death due to her heart giving out after years of battling addiction. I had the idea to write it before she died but after she passed I started to think what will people remember about her. How will the world see her for who she was? Will she be remembered for the battle she fought? For the crazy,funny, insanely clever woman that she was?
Then I thought about what people would think of me when I died. Because with a rare heart defect sometimes the thought of death out of nowhere comes into my head a lot. All the while thinking about writing this autobiography I could hear my aunt’s voice saying “Oh just stop thinking so much and write it all ready!” Even after passing away she is still pushy and bossy. Now you know who to blame for me writing this in the first place. (I’m joking with that last line. )
I believe that everyone, even mainstreamers, have some kind of disorder. We should start treating each other as human beings, not this race or that race or that church or this one. We are all people and that is what should count above everything else.
There is a movie on a streaming service about this guy who creates a freak show circus and they kind of team up and sing this great song. When listening to it a number of times (like somewhere in the 200 range) it reminded me of how people with disabilities get treated by the world. We sometimes get told we are too damaged or broken to be even looked at. We are cut down to nubs at times. Others feel sorry for us but when it comes down to it, no one is there to help us out of the dark hole that others put us in.
Maybe instead of smacking us back down to the ground you give us a hand up? (I promise you we won’t drag you down to the place you put us.)
As I said, while writing this I did learn a great deal about myself. I learned that I shouldn’t have to hide my scars or how smart I am when it comes to some things.That I shouldn’t hide who I am as a person. (Even though it’s really easy to hide when I am only four foot eleven inches tall.) As an example , this past November I got published in a book of poems and I wasn’t planning on really telling anyone. Not that they wouldn’t be proud of me but I knew that no matter what it still wouldn’t change anything at my house. I would still be the person who does all the chores. Like feeding the cats and all the house chores. I thought what is the point of telling anyone really? And I was right it didn’t change anything. I know I just said not to hide who you are but sometimes certain things should be just for you. (Unless you are an ax murder then you are going to jail.) I also learned that I don’t have to put on a strong face because that gets me nothing but more house chores to do. (And I have enough chores daily thanks to the two furballs I have called cats.)
In all these years of writing for my characters, mostly Meredith, I have seen somewhat of a different way I hold myself to others. She has given me confidence when I needed it back in high school. Meredith still helps me from time to time when I’m writing from time to time. (She also taught me some amazing swear words.)
And I learned from Freya that I can show the soft side of myself at times, that I can just be sweet at times to put on the charm. Also that my temper is nothing compared to her when she is mad. That woman is madder than a hornet while riled up. (But mostly I learned to be charming so I can try to get a good looking guy. Who am I kidding I never get the guy. )
The list goes on for everyone I know (And no I’m not going to list them all cause you all know who you are.) but the one thing that stands out to me now as I am about to finish writing this.
“If you do something right the first time around then maybe you don’t have to redo it later.” - my step dad. So here is to hopefully doing this right this time around.
“Everyone deserves a voice of their own. If it’s writing, painting or whatever they pick. The true trick of it is getting others to listen.” - Jessica McDonald
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