peeks into my life dealing with everyday life and obstacles as well as obstacles of dealing with disabilities and accessibility obstacles, Chronic Pain due to broken spinal rods, living on pain medications, dealing with anxiety/depression, experiencing the newness of love, and fighting for my right to live and love my life in an ableist society.
technically it started last night. It was a bad pain night and I couldn’t sleep. I stayed up till 2 in the morning before sleep finally overpowered me.
I slept on and off. Woke up to feed the cats, stayed up a bit, went back to bed and slept again. had joint and head pain most of the day.
Then the icing on the “crap cake” of the day-
poor david just witnessed a “Jamie Disability Meltdown” Adventure
it started with him asking me to put mayo and mustard on his bread for his hotdogs while he was microwaving the hotdogs…so I did it my way, on the plate and just spreading it with butterknife.
David: why you don’t hold a bread in one hand and use the knife to spread with the other hand?
Jamie:(a bit sarcastic/snarky) because if I hold it in one hand, it doesn’t hold flat, ill squeeze/bend my hand and then you will have squished bread..
David: you can’t hold your hand flat? Jamie: (again, snarky/sarcastic) No, I cant. its called Ehlers Danlos..remember..that thing I have that makes my joints loose and weak.
David: come here. I’ll show you. Jamie: (getting annoyed and flustered because I been living with this 29 years, does this dude seriously not think I’ve tried multiple ways to do things?) No. *voice starting to shake and fists start to clench*
David: come on Jamie, just try my way. Jamie: (finally breaks down and flood gates open) David, I’ve had this shit 29 years, I’ve tried every way I can think of. This was the easiest way.
David: okay. okay. I wasn’t teasing you. *trying to hug me*
Jamie: I know. But still, if you had something for all your life and parents who taught you to be as independent to the best of your abilities, you think I’d just give up? no. this was the easiest and most accessible way for me.
David: I didn’t know. I only been with you 3 years. calm down. its okay. i still love you, you’re still beautiful. calm down. you gonna give yourself a headache.
Jamie: *sniffles and trying to calm down* I already had one to begin with.
————————– hey if he wants to be future husband of someone with a disability, he might as well see all the ugly sides too. 🤷♀️🤷♀️🤷♀️🤷♀️🤷♀️🤷♀️ he wasn’t there for the 2012 episodes-poor mom had those episodes and she didn’t trigger them…she was just in the “crossfire” lol
and then later on another incident involving David happened: we tried to make waffles breakfast for dinner but no cooking spray, so tried to use regular cooking oil, but they stuck and didn’t cooperate so I was put back in that “i can’t do nothing right.” Mood.
I hate days like this where my disability and the side-effects of it, feel like the world is closing in around me and I cant breathe. *sigh* just another day. Things will get better. Tomorrow is another day.
A week ago, July 23-24, David and I went to Bay St Louis Mississippi to go hang out with my “hitler of the respiratory department,” friend Marcela Spraul from St Louis, Missouri.
Marcela and I got close while I was at Shriners Hospital back in 2012. She has become like an older sister/ second mama to me. She called and told me they’d be in Bay St Louis and I immediately googled the directions. It was only 2 hours and 50 minutes from my house, Easy! Way better than the usual 10-12 hours it takes to see her; of course, I am gonna make the trek to go out and see her.
We had a lot of fun and I enjoyed catching up. and I will be seeing her again in September for my checkup appointment in St Louis. They offered to host us so we don’t have to spend money on hotel- Awww! ❤ I love Marcela, even if the beginning of our relationship was a bit rocky! LMAO.
One of my favorite Disney Movies is Hunchback of Notre Dame. I relate so much to the main character, Quasi Modo. When it first advertised, I was about 5. “Mom look! He got a back like mine…”
Fast forward years to 5th or 6th grade when they’d call me “hunchback” And I’d cry upset..oh how time changes perspectives. Lol
Still one of my fav movies though.
watching it as an adult, I had my own inner dialogue:
1.) Frollo seems like a majority of society about special needs individuals,
2.) there are some ableism beliefs “that special needs can’t have love,” “deformed,” “ugly,” etc.
3.) quasi heart is so sweet and pure and brave. ,
4.)Frollo is Satan, 5.)Esmeralda is so loving, 6.) Love and loyalty win overall.
7.) Quasi should get the girl just “because he was looking different,” he was friend-zoned smh.
8.) If nothing else, I want to have a heart like Quasi.
9.) And Frollo falls to a fiery death…have fun in hell, you blasphemest demon a-hole. #byeFrolicia lol 10.) Aww, the little girl moment, in the end, was so sweet. She was curious, not scared, and accepting of him! Proving that hatred and fear is learned. #innocence ❤️❤️❤️❤️
Food for thought… I had a diagnosis “Scoliosis “ and “Ehlers Danlos syndrome” since infancy. One pediatrician even told mom “you can just look at her and see she isn’t normal.” In reference to me.. a baby. An innocent little baby. Now my parents had 2 choices in raising me:
-Either prove society wrong and that my life had worth, treat me like they would like my older brother (who is “normal”) and raise me to be independent and self sufficient to the best of my abilities…
– and I’ve seen this with some families(not all)..give them a “pass”, no expectations of them, no discipline or correcting them. “Oh they have this diagnosis, they don’t understand “…blah blah blah excuse after excuse. “..no boo, they can understand “right and wrong,” but you just don’t wanna go through the “headache “ and time of teaching them. Or worse, you pity them and feel sorry for them;which will “cripple “ and “handicaps” them more. The world is rough and tough, it will not pity them, they need to be prepared.
My parents were tough but fair. I may not got namebrand clothes or expensive shoes, I didn’t get toys or candy every Time I went into store (unless I had my own allowance or money I saved or special occasion/holidays), I didn’t get cell phone till high school (16),I had some chores to do(whatever I could), I was held accountable for my grades and misbehavior. On the flipside, I never did without food, shelter, clothes, I had toys, I was taken on vacations,but there was lots of love and plenty of memories made. That’s wayyy important.
Life isn’t easy for anyone. But it’s up to that person to decide “do I wanna live like this? (Poverty, struggles, victim mentality “poor me,”) or do I pick myself up by my bootstraps and make better for myself.” Its all about perspectives, confidence, determination,and willpower.
Am I saying there aren’t obstacles in life that cause delays and blocks on your life road? No. Absolutely not. Never would I say that. And I’m not saying not to vent or fight for change. But it’s better to lead by example to be the change you wanna see. Be the spark for change; Be a Leader.
Turn to God’s light and goodness and he will bless you. God bless everyone.
In Jr. High was the time I back-sassed my dad in Lowe’s. First, let me explain that I was grouchy because I didn’t want to be there, to begin with, but yet I was forced to go with him. We were at checkout and we had roach spray, along with many mouse/rat traps. The clerk said some statement about: “you must have a mouse problem?” I replied: “Oh, yes! A lot!” My dad replied: “Jamie, we don’t have a problem; just an occasional mouse or two from the field next door.” But of course, Jamie with the big blabbermouth didn’t shut up until dad growing frustrated told me “Jamie, Stop.” Well, I was mad that he cut me off from telling my stories, plus the fact he forced me to come anyway. Once dad had paid for the stuff, he asked me to carry the bag, to which I replied: “Why can’t you do it; I’m not your slave.” Oh, you should have seen the vein in his temple throb, and his face turn red; I knew I had crossed the line: “No daddy, I’m sorry; don’t whip me!” as loud as I could in Lowe’s, not realizing that if anyone heard him, they could report him for “child abuse,” when he was just disciplining his child. Boy, was my dad embarrassed and furious! I think if my child ever did that to me, I would have whipped them when we got in the car! I was so scared that I didn’t get into the front passenger seat, instead, I got into the backseat on the floorboard; trying to avoid my Dad’s wrath! (He still loves to hold this story over my head! LOL)
Due to the severity of my Scoliosis/Kyphosis, in summer after 4th grade, I had my first bout of Pneumonia. For those who may not be aware of everything that Scoliosis effects, here’s a health lesson; it’s not just the spine. Sure, the definition is “Lateral curve of the spine,” but it all depends on the severity. My Scoliosis became what is known as Kyphosis, “Hump Back,” and is multiple curves, whereas Scoliosis is just one curve. The more a spine curves, the more it can cause other internal problems in important organs such as the heart, stomach, lungs, etc. Before my surgery in 2012, my lung capacity was 18-20%, I had ribs twisted around my spine, a lot of stomach problems, and problems that were never diagnosed or discovered until my pre-op visit or after surgery; (How weird is that?) Anyway, I was almost finished with my week of Summer VBS (Vacation Bible School- a weeklong camp that is put on by local churches/religions), when the Wednesday night, I started to develop a cough. Mom took me in to see my pediatrician, and he said, it had started as a typical “summer cold,” and due to my hatred of shots, my doctor just gave us cough medicine. The medicines, however, did not work, instead, my cough progressed until I had a “popping” in my back every time I coughed. I say Pneumonia, but it might’ve been bronchitis that was turning into Pneumonia, I don’t remember exactly what the doctor had told my mom, other than the fact I needed a shot; that memory stuck with me! We went down to the pharmacy that was in the same plaza as my pediatrician’s office and as soon as we got back to the doctor’s office and I saw that needle, I had a full meltdown in the doctor’s office, to the point where mom had to hold me down. Normally shots are given in the arms, or the butt, right? Mine was in my legs because it was the only spot on my body that had “any meat” on me. You should’ve seen it, mom holding me in her lap, me tossing and turning, her having to trap my legs under hers so I wouldn’t try to kick; I laugh now that I think about it because shots aren’t that bad anymore, sure they are unpleasant, but really a quick pinch and then it’s over.
After the shot, I was crying and telling my doctor “I hated” him and how “he was so mean,” being a total brat, but by that night, I felt like 50% better. Shots may suck, but you feel a lot better afterward because they work quicker than medicine. Life is a lot like a shot, there are changes we don’t like or can’t deal with, we cry and boo-day about it, but it doesn’t change the fact that it is going to happen; it’s a slight “pinch” (shock/anger/sadness, etc), but then we adapt to it and are over it.
I have always been an animal lover: I got my first dog (although I don’t remember him) at infancy; his name was “Fred” and he was a black lab. He ran away when I was 2 years old because Mom had put him outside because he had gotten too big. We had other dogs when I was in pre-k, but I don’t remember them well: What were their names, etc.? When I was about 5, I got a mixed dog and named it “Ladybug”; don’t ask me why? I think I was aiming for Lady from Lady and the Tramp, Who knows. We also got our mixed dog (part Rottweiler part German Police dog), Cajun for my brother Jared; that was a good dog! She was gentle and calm with kids/ mostly me, she knew lots of tricks: like you toss a ball in the air and she would catch it. She let me ride her like a “pony” because I kept bugging Dad for a pony, and he said “Cajun can be your pony” and I said, “But she’s a dog!” By age 10, Cajun figured I was too big to ride her anymore and would sit when I’d try; so I would just slide off of her. LOL. We also dog-sat for my Nanny; her dog was a Cocker Spaniel mix (I believe) named Freckles, but the dog ran away. Shortly after, Lady Bug ran away too and I remember telling Mom, “Lady Bug is going find Freckles; that’s why she left!” I felt so bad about losing my nanny’s dog; considering at the time she had just lost her father, her husband, and her only son all in that same year; I offered to buy her a new dog, but she refused. We also had dog-sat my “Poppee’s” dog, Pumpkin, but Pumpkin got into the front yard and got hit by a car on the highway. We also had some cats: An orange cat I got in kindergarten that I named Toulouse because I was obsessed with Aristocats movie; sadly that kitten got out of our garage and as Mom was pulling into our driveway, she accidentally ran him over. I remember I cried and said “It’s all your fault,” Sorry about that Mom, but I was 5. LOL. When I was 6 years old, my favorite cousin Christine called Mom saying she had found a white cat with blue eyes at a gas station; Mom had been wanting a white cat with blue eyes, however, this cat had green eyes that looked blue in certain angles. We took it home and I named her “Snowball” because she was white and fluffy. I loved Snowball, but she, despite being “fixed”, still ran off with a stray male cat; however, I think someone might have picked her up and kept her because we had a collar and tags on her. After Snowball, when I was in 2nd grade, Dad, and Mom found 2 baby tabby kittens that couldn’t lap milk yet; Thinking I was still asleep, they both agreed “Don’t tell Jamie,” because I would want to keep them. Well, I heard them and ran outside to see what the secret was. They were named “Tuffy” and “Tweety” because I thought Tweety was a girl, I knew Tuffy was a boy; however, they both turned out to be males and had to be put outside due to peeing outside the litterbox. While they were kittens, they would trample over my Barbie stuff so we’d say “Ahh, the fuzzy gorilla kitties are attacking! RUNNNN!” We also had to bottle feed them for a while; they would bite and claw, so mom would wrap them in a towel to feed them; Dad often said: “That Mom didn’t come back because these little sh*ts were abusive while feeding; She ditched them!” LOL.
In 3rd grade, after a misunderstanding at Durell’s pet store at the mall leading me to fall in love with a dachshund puppy (despite not being able to afford it from the pet store,) I eventually got a dachshund puppy named Oscar. Oscar had been bought by one of my neighbor’s friends’ for their toddler, but he was too hyper for their child and for $150 he became my dog. He was a “horny little Weiner” because he would often hump legs or try to “get with” my brother’s big Rottweiler/German Shephard mixed dog, Cajun. As he got older, he became more aggressive and would “snap,” and bite people. He, however, was like Mom’s shadow- he loved mom and followed her everywhere.
In 9th grade, for my birthday, I got a kitten from one of my neighbors who’s cat had just had kittens(they were outside and the siblings eventually got drug off by a wild animal- coyote or hawk or something). I named him Taz (Tazmanian Devil) because he and my brother’s ferret, Spaz, played together (Spaz and Taz.) He loves my Mom and my brother, but cannot stand me and my dad; he is also very antisocial and “demon spawn,” but I still love him or try to.
In 2010, a stray beagle fell out the back of a pickup truck as we were going out to eat and we picked her up, but by the time we got her into the car and got stuck behind a red light, we had lost the truck. We took the beagle home and ran an ad in the paper for a week, called shelters and vets to put flyers, etc. but no one claimed her. I wanted to keep her and named her “Mya” because Oscar tried to “get with her,” so “Oscar-Mya” (Oscar Myer).
In 2016, After losing Mya to a terrible accident on the road, I told my parents I wanted a new dog for Christmas, however, I got the “present” early in August when I found a cute puppy listed as a beagle mix on a shelter group on Facebook. Her name was Beignet and she was about 4 months of age at the time. 4 years later, and I can say she is one of the best dogs I ever owned. She is my best friend and I love her so much- she makes me laugh, brings me comfort when I pet her, loves to play, cuddles/snuggles, etc. Although we suspect she is an American Foxhound (mix or purebred unknown) because she is bigger than a beagle and many in public ask if she is, so we researched it, and found she has mannureisms and appearances of an American Foxhound. Whatever her breed, she is the best dog friend ever.
Those are just a few examples of my love of animals; there are many more stories that I could share, but I will spare you; for now: P lol. I am an animal lover: My dream is to own a lot of lands and has many cats and dogs, some ferrets, some bunnies, maybe a few hamsters, even a horse. I want my future children to love animals as much as I do; animals can be great companions and quite therapeutic and relaxing to just snuggle with them. ❤
Yesterday, Wed March 18, 2020, while I was using the “dog shaver” to see about Beignet’s loose dog hair, she was more hyper than usual and wouldn’t keep still. Long story short, she moved while I was going down her back with it, and when she moved, I slipped and got the back of one of her legs- a small cut on her leg and bleeding a little. We went inside, I got bacitracin, gauze, bandaid, and medical tape and bandaged her up. I walked away to put the stuff away and come back to find she had already chewed halfway through the tape, gauze, and bandaid.
Later that night, I decided to practice my photography skills and used Beignet as my model and uploaded them to her Instagram to try to build up her following and add to her content. I am trying to get her some brand deals; I am almost like those moms who push their kids into casting calls. ugh. Not good, but I can’t help it, she is just so cute and a pretty dog and so photogenic.
My brother and I’s relationship has gone back as far as to when I was in the womb. Mom often wrote that my brother would tell her, “It’s a girl because all she wants is junk.” Mom ate just healthy foods when she was pregnant with my brother, whereas, for me, it was just junk food. Another interesting fact is that my brother is the one who picked, “Jamie,” for my name; Mom and Dad wanted a “J” name, who knows how he picked it: maybe it was because Dad’s middle name was James, or maybe he just liked the name.
Once I was born, he often spent time with me. There are pictures of him holding me, or sitting with me in the rocker under some covers. When I was 2 years old, he’d follow me around with the video camera and video me; it’s one of my favorite videos even though the camera shook and watching it, can make you sick from all the motion because it shows he loved and interacted with me. I gave him the nickname “boy” when I began talking; my uncle/ Paran would call him that, and I picked up the habit. When I was 2, I’d beg him to read with me and he would sometimes. Our relationship started to get strained when I was in pre-k because he started to become a pre-teen/teenager.
When I was 5, I would sit at the front door like an eager puppy, waiting for him to get off the bus. I’d jump around excited, “bubba’s home! Bubba’s home!” Would he pay me any mind once he got home? Nope. He’d walk past me, annoyed from school, go to his room and slam the door. He was in Jr. High at the time and Mom says, she wouldn’t interact with him much except to make sure he was still alive, and to let him know the food was ready.
When you are a younger sibling, you often tend to look up and emulate/try to imitate your older siblings, out of the feelings of “that is how I need to act, just like____ ((whatever the name may be). For me, when I tried to do things my older brother, Jared, did, it often got me into trouble; examples of this include the time I nearly drowned at Blue Bayou Water Park in the wave pool and another time when I was crossing the highway we live on, to head home from the neighborhood across the street from where we lived.
I was about 5 years old, and every summer one of the highlights was to go to Blue Bayou Water Park with my Aunt (one of Mom’s sisters-in-law) and her children. At the time I had not taken swimming lessons yet, so I stayed in the shallow ends of the wave pool, or went in the kiddie pool. We were in the wave pools and the waves had not started yet; my Brother had come to meet us and right before the waves started up again, he was heading out to the deeper parts; At the time, I admired and looked up to my older brother, and tried to follow him. I was crawling on my hands and knees into the deeper and deeper (but still in the shallow part) of the wave pool; the waves started and knocked me over, and I started to panic, so I didn’t even think to stand up and run back to mom. I just stayed under the water, coughing and spitting up water, waving my arms. Mom ran over and “rescued” me. I think it was this incident that convinced mom to get me into swimming lessons. The pool and water soon became a big part of therapy for me and I love to swim now; I am convinced I am part mermaid. I want to be able to breathe underwater, swim with dolphins; I want to be just like “Ariel,” the little mermaid.
The other incident was when I nearly got hit on the highway we live on. My Brother, his friend, my mom, and I were across the highway in the neighborhood, riding bikes (I had training wheels on mine). The sun was starting to set, and the mosquitos were coming out and biting me. My brother and his friend were old enough to cross the highway by themselves, so they told mom and began to leave. Mom was talking and visiting with one of the neighbors, kind of distracted; I kept tugging on her arm, ready to go, but she wasn’t listening. That is when I saw my brother and his friend leaving, so I followed them; His friend noticed and started to lag to watch me. My brother looked both ways and crossed the highway, with me behind him. I, however, was too young to know the whole “look both ways before crossing,” rule, and started right behind my brother, just as a huge 18 wheeler started towards me, really fast. Luckily, my brother’s friend was behind me. He grabbed me out of the road just in time. Dad was in the front yard, and he looked like he was about to have a stroke! I think my brother got in trouble instead of me, but I can’t remember for sure.
I think it was after those two incidents, I learned not to try to imitate my older brother. He was older and knew how to handle life more than a little kindergartener did.
My brother and I did fight and have that sibling rivalry thing, up until I returned from surgery. We had rare moments where we didn’t fight or argue, but we were two different individuals. When I was younger, Jared had chores, while I didn’t; when dad would fuss at Jared to go do chores, occasionally I’d fuss dad and say “quit working Jared like you a slave-driver, dad,” but he’d often tell me “stay out of it, Jamie.” And I quickly shut up.
When we did argue/fight, it was often because I was a hyper little brat; I will admit that. I think it was mostly, I wanted him to play with me, and he wouldn’t. I called him names: “Jar-head, armadillo (I have no idea why,) Boy (that was more when I was a baby/preschooler).” Sometimes, I’d have a “food fight” at him with my tea-party play food. He was a boring teenager who didn’t want to play with his kid sister, and I wanted attention from my big brother; I just sought it annoyingly. He would pull jokes and pranks on me, and I took it the wrong way and would cry. When I was 2 years old, he put a frog in the “golden Easter egg” during an Easter egg hunt, and to this day, I blame that for my phobia of frogs. Sometimes, I would pick/instigate it, and when he’d try to “strike back,” I’d go hide; like the one time in 2nd grade when we had ice/snow, I went outside, got some icicles, and stuck it down the back of his shirt when he wasn’t looking. Afterward, he went outside to get some, I ran to the bathroom and locked the door.
When he had friends over, I’d try to hang out with them, tag along, and sometimes he’d lock me out of his room, or they’d torment me, by locking me in the hallway till I was a crying mess, banging on the doors; sometimes, one friend and him would pretend that they were going to put me in the oven; they wouldn’t actually turn the oven on, just open it and act like they were going to put me in; I’d cling to that friend’s neck and beg “No!”
One time when I was 6 years old, he had to babysit me. I was playing with his Nintendo NES, but he got mad that I had taken it out of his room without permission, so he unplugged it, and put it back into his room. I was easily scared of everything and every villain of every movie, but yet, I watched Anastasia the movie that night and slept on the floor in a sleeping bag in his room. I heard a noise, a voice,“Jamie, go unlock the back door.” It was my parents; it turns out they had locked themselves out. I tried to shake Jared awake, but to no success; I was so scared that it was a bad guy, trying to trick me, but I did go unlock the door and luckily it was my parents; I later found out, my brother was faking sleep just to see what I would do; what a jerk!
As I got into my teen years, he would be annoyed because unlike him, I had no “thirst” for knowledge. He felt I was “ignorant” and that was one of his pet peeves. He’d occasionally try to help me with math or science, but he’d end up confusing me more, and I’d get aggravated and snap at him. Other than that, we didn’t talk or hang out, mostly cause he was in college and I was still young and “ignorant”. The only time I remember him smiling during this time was the one time he got drunk and “creepy”; we had gone to a wedding for a cousin, and then after we went to see a movie: Mom, Dad, my brother, his girlfriend, and me. I don’t know how this happened, but somehow I got this seat between him and his girlfriend; my brother started to hug me, smiling, and ruffle my hair: I wasn’t used to that treatment by my brother, so I looked at his girlfriend and said: “switch seats with me, I think your boyfriend is plotting to kill me.” Another memory around this time was when I was getting curious about my Ehlers Danlose and my brother who always had an interest in science, came to me and held a scalpel and said: “all I need is a skin sample and I can get you your answers.” I looked at him and yelled “I’m not a science project, heck no! I’m not letting you cut me with that thing, get it away from me, weirdo!”
It wasn’t until I guess that I got into college myself, that we started to have a different relationship. When I’d see him, he’d ask me about my classes and how they were going, he’d offer to help me out when I’d hurt with aches, etc. He was there when I met Dr. Lenke for the first time, and he asked questions to Dr. Lenke. When my family did a benefit for my medical funds, he and his girlfriend helped out a lot. I guess what I am saying is, once I got into college myself, and wasn’t as “bratty” and “ignorant” he started to like/tolerate me, but it wasn’t until I got home from my St Louis journey, that our relationship got to what it is now; When I first got home, I had gotten a new computer and he was helping set it up. He had me sit next to him to watch, but he would ruffle my hair, and just smile at me; it’s like “uh…weren’t you suppose to ruffle my hair like that when I was 5?” Now when we see each other, we give hugs, no kisses because that’d just be too odd. He asks about how things are going in my life. I ask about his occasionally. We have a good relationship now, it was odd at first because I was so used to the tension, but I love it now. I know when I need it, my big brother will always have my back; Love you, Bro.