Life of someone with EDS/ Ehlers Danlos Syndrome: I have had it all my life, but don’t know the type. I was trying to find a geneticist that accepts Medicaid because I am having more and more joint pain(if it’s not my scoliosis, its joints), and the only way to truly find alternatives and answers besides Pain medications would be knowing the type I have. so I called Medicaid, but they say all that’s in their system is Pediatrics.
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.
What teenage girl that has raging hormones and mood swings has never asked the question, “why? Why me?” or said the phrase, “I am ugly”? I know I have said it a lot. When you feel like the only person who has a disability or the only one “outcast from the ‘normal’ children, it can feel quite lonely and you feel very shy and don’t want to socialize and make friends; Camp We Can Do was my answer to this problem.
Camp We Can Do is a day camp that lasts all summer for kids with special needs of all kinds; ranging from ADHD to the most extreme of cases: Autism, Physical disabilities, Down syndrome, and some others. Too numerous to name them all. It is like the camp is a haven for kids who feel like outcasts due to their disabilities. It’s a “World of our own;” which was the theme for the 2007 camp year.
I first heard about Camp We Can Do from my friend that I made when I was in pre-school who has Autism; his parents told my parents about camp because Mom had tried to figure out something to get me out the house during the summers, and this was her answer; it didn’t involve pushing me to try to sleep away from home (I hated sleeping away from home; I got scared too much).
When I heard the news about going to camp, I was so nervous since I was going to be new to the camp, “how would the kids like me? Would I look like a freak to them too? What should I wear so I look okay? What if I made a mistake and got teased?” Boy, did I worry so much! When Mom and I went shopping for the usual summer clothing shopping trip, I would always ask when I was trying on, “Does this hide my curve?” I would try something on and come out “Does this hide my back? How’s this swimsuit look? It isn’t too tight or reveals my back curve too much? “Does this look okay?” “Ugh, this looks so bad!” “Why I got to be so fat and ugly?!” “I hate my life.” Oh it could go on and on, I hated shopping because if something I liked, didn’t look good on me or didn’t fit right, my whole world would fall apart and then would come the waterworks; you should’ve been there to see an eleven-year-old throwing a tantrum in the store like a little baby!
The first day finally came, I was so scared and nervous: I didn’t talk to anyone, I kept to myself, and didn’t want to take part in activities. I was also very unprepared; I didn’t know I needed a blanket for nap time/”quiet time” or that I needed a snack for snack time (luckily a nice girl who is now one of my best friends, who was like five years old at the time, shared her snack with me.)
After that first day, I loosened up and realized, they won’t tease me or make fun of me. We were all in the same boat; cast aside from the “normal” kids.
When I was a camper at Camp We Can Do, I also acted like a “MOM” to some of the younger children. Sometimes I’d get dropped off early when Dad would bring me. I got there when some of the little kids would get dropped off, and you know little kids when Mommy and Daddy leave, they cry. I would entertain and make them forget that they just got “abandoned” at Camp. There was one little girl who I am not sure of her diagnosis when she’d get dropped off, I’d take her to the bathroom because we had limited staff for early drop-offs. I’d give her some Peanut butter crackers because she was often hungry, I bought her a toothbrush and would bring toothpaste and help her brush her teeth, and would wash her face up with a wet rag. After that, I’d take her to the TV room with the other Early Drop-offs, put her sitting on my lap, and hug her while we watched PBS kids (which I hated, but I dealt with it). When we’d go bowling, I’d often be the one to take her to the bathroom because I was the only “trustworthy” camper (nice way of saying Mentally able to handle the responsibility) and we didn’t have extra staff to take them individually and if we didn’t take her then and there, she’d sometimes have accidents. She loved to sit on my lap, whether it be for arts and crafts, cooking in the kitchen, etc. In the morning exercises, I would help get her engaged by saying “(Name), look. Just like I do” and she’d imitate me. She made me laugh cause she had this cute little phrase “Shake da booty” when they would play music at camp and she’d shake her butt. I often got into fights with the “foster grandparents” because they would force her to get out of my lap, “She’s too big for that, “or “you are a camper, not a staff,” or “She needs to sit in her chair.” Some days, when I’d clean out my closet (since I was in children’s clothes at the time) and she was about as big as I was, I’d sometimes bring her extra clothes and told her mom that she could keep it or bring it back, it didn’t matter. Sometimes I brought her toys and let her take them home for a week, and then she’d bring back to “trade out” for something new. I think her favorite time was snack time, though because she always got her favorite treat; yogurt. She loved yogurt and I always packed it. As soon as I’d open my snack box and she saw it, she’d squeal “OGIE!” (Which was how she said “yogurt”) and I’d spoon feed it to her every day. When she’d get sick at camp, I’d stay by her side the entire time. I’d run and get water for her, watch the nurse take temperature, run and get blankets, whatever she needed, I ran
and got. When we’d wait for her parents to pick her up, when she was sick, I didn’t care if I would get sick, I would hold her in my lap, covered up in a blanket and rock her.
I miss her so much now, but I think her family moved, but she will always remain in my heart as my “little camp daughter.”
Sure I loved my years at camp we can do, but there were downsides to it, as well. One downside was when I stood up to a camper for one of my friends and this camper punched me in the face. I got in trouble for not telling a counselor, instead of taking it into my own hands. Another downside was when I got in trouble with a counselor, but I was allowed to leave my groups to help with photos by the director. When the counselors would fuss me over what I deemed “Stupid stuff” I’d tell them off and got sassy. Now that I am older and have volunteered as a staff, I realize what they were trying to do.
I loved camp, and I loved the friends I made through Camp We Can Do, but there were times I didn’t like as well but like everything else: You take the good with the Bad.
As a child with a disability myself, I have always been exposed to different special needs and disabilities, but my first “real” exposure to Autism didn’t happen until I was 12 years old and met a boy who would later be known as “my autistic stalker,” because he would call me all the time and never give me any space, but that’s later in this story.
When I was 12, I met “my autistic stalker,” at camp through his neighbor, and a counselor at Camp We Can Do, who had her own Autistic son. She drove all of us to Camp from Opelousas. My “Autistic Stalker” when I first met him, was a quiet, shy boy who mostly kept to himself except when he got the sudden urge to quote characters from cartoons; That is until he met me.
Don’t get me wrong, he was like that with me too, at first, but each morning I would get in the car, greet him with a smile “Good Morning (name)” and give him a hug. By the end of that summer, I had broken him out of his “Autistic Shell,” and got him talking. The following school year, however, the adaptive P.E. coach who traveled to all the schools, told me that I had developed a “Secret admirer” in this boy.
Since I had never “truly” experienced any relations with an Autistic boy before; aside from my Pre-K buddy, I did not realize what a crush from an Autistic male would entail. At first, I thought it was “Cute” and flattering: I’d let him hold my hand, I let him kiss my cheek, after all, I didn’t have a boyfriend; it got more severe the more I let it go on: pretty soon, he’d have a meltdown if I left the room just to go to the bathroom, yelling as loud as he could “JAMIE COME BACK!” and I was like “Dude, I got to go pee!”
I didn’t want to cut him off as a friend so I let him keep calling me, even when he’d call more than once: and I had better answer or He’d call and call and call until I’d answer the phone, leaving a bunch of voicemails. I also couldn’t skip Camp or he’d have a meltdown, “JAMIE I can’t go to Camp without you,” or “JAMIE I HATE SICK! YOU GOTTA GO TO CAMP TOMORROW! I CANT GO BOWLING (Or SWIMMING) WITHOUT YOU!” Sometimes just to get him to not cry on the phone, I’d pacify him and say “FINE (NAME), I AM ALL BETTER” and go to Camp the next day, even if I felt like crud. If his calling got on my nerves, and I didn’t want to blow up at him, sometimes I’d answer and try to disguise my voice (which didn’t work) and say “HELLO THIS IS PIZZA HUT. What size Pizza would you like?” He’d get so flustered and argue, “THIS Isn’t Pizza HUT, you’re Jamie Cormier!” I’d keep up the “pizza hut” charade until he’d eventually hang up, only to call the number again.
He was obsessed with Power Rangers and he always said he was the green ranger. I hated when my mom would bring him and I to and from camp because this was literally the conversation:
HIM: Jamie, you are the pink ranger and I am the green ranger
ME: I want to be purple
HIM: NO! Girls are Pink!
ME: I prefer Purple.
HIM: NO! You are pink!
MOM: My favorite color is green, so I’ll be the green ranger
HIM: NOOO! Mrs. Cormier, I’m the green ranger and Jamie the pink ranger
(ON and on and on; the whole ride going to camp and the whole ride coming back.)
During swimming with the camp, we were play splashing each other, playing chase in the pool, when all of a sudden he grabbed me and dunked me under the water multiple times when I was caught off guard. Scary, right? I was terrified, and thankfully the counselors were around to stop him, and after the incident, he teary-eyed would point “but she got a bee in her hair, I was trying to get it out.” I have to laugh about it now, but back then, I was scared he was trying to drown me.
Another thing was when he first started his “crush,” I will admit that I used it to my advantage; didn’t want to get up to go get my snack bag? I sent him. Wanted fresh water from the fountain in a cup? I sent him. Wanted a “guinea pig” to test new snacks on? I
made him eat it first. There was a rolling chair at camp that my friends and I claimed at “snack time”. We sat in it while ate our snacks and if we wanted to move locations, we made him push us. I don’t know why, but we gave him the name “sofa” when he did stuff for us; kind of like a pet-slave or butler that we took in. Kids will be kids, even when you also have disabilities, still can “bully”; another dark memory from Jr. High years.
On the way to camp, we’d jam to mostly country music; he loved Rascal Flatts, and on the song “Me and My Gang,” for some reason he’d tickle me when the chorus would go “Me and My Gang.” (WHY DOES EVERYONE LOVE TICKLING ME?) I remember one year for the Camp talent show, he sang to “Life is a Highway,” I remember watching him and thinking “he never would’ve done that had he not met me and opened up,” I was so proud of how much progress he had made, even though sometimes his constant clinginess to me, drove me crazy.
There were things I loved about him: I could do whatever I wanted and he not hate me: Draw mustaches on his face, give him marker tattoos, sing at the top of my lungs and he didn’t care, he was really good at simple math (arithmetic) and drawing ninja turtles. For the Halloween and Christmas Dances, he always wanted me to dance with him at least 1x. The thing I didn’t like was how clingy he became since being friends (total 7 years) and how jealous he got when I was with other boys at camp, even when I became a counselor and had to interact with them as part of my “job.” When he saw me with other boys, no matter their age, he’d either tug me away as hard/rough as he could, chase them off yelling at them, charge at them physically; I had to send him to the “office” for that a lot! The other thing was, he was starting to try to kiss me on the lips; One day he tried, and it was a bad day already: I snapped and soon had him pinned to the fence, yelling “YOU DO THAT AGAIN and You will lose teeth or your lip will swell!” That Moment, I am not proud of.
I know he couldn’t help it, but my anger/temper is one of my biggest faults. I am working on it now because going into the field of special Ed, you don’t know what you could face, so I have to try to work on my anger/temper, and patience.
One moment I am proud of with this individual was when he started freshman year at my high school during my senior year. The first day, I saw him and his mom in the halls, and I promised I’d look out for him since I was a senior and would have some free time: I’d defend him in the hall (got sent to the principal so many times for fighting, kicking, and hitting anyone who would mock him and tease him). He would see me in the hall and he’d get all excited and do that “spaz out” flapping thing that some Autistics do and yell “JAMIE!” He usually saw me for lunchtime, so everyone was out of their classes at this time, and a lot of “normal Ed.” Students would imitate this action and laugh, or they’d mess with me “Oooh Jamie’s got a retard boyfriend!” You can ask my Graduating class, I could be a witch if you got on my bad side. Another thing I did to take up for him, was when I got him switched from his first teacher’s class because I had gone into her room to check on him during my free time, and she’d always have him in a time out for something that he couldn’t help; it was a manifestation of his disability, or she had the class doing kindergarten work and they were in high school; like color sheets or stuff like that. Yes, they had Autism, but try tapping into that brain, you might be surprised. I argued and fought with her so much about these issues and got sent to the principal again because I “was disrespecting my elders,” then the witch needs to do her job, eventually through my being sent to the office so much, my friend got switched to a new special needs class.
As much as his constant calling used to get on my nerves, I kind of miss it, but I also don’t want to reopen that door, because our future has changed, however. When I was first starting college he’d still call excessively no matter how much I’d say “(name) I’m in college, I need to study. As of this year, the calls have finally stopped. All I can do is pray that he is having a good life and enjoying it, whatever he is up to now. One thing I learned through “my autistic stalker friend,” is that there are boundaries and limits you need to set, it’s a social issue and as such, you need to make sure they understand you only see them “this way” and not “that way,” No matter how many times I just told him “No, just a friend,” he never understood: when this all started, I was only 12, I was too young and too friendly to know I had to set limits and boundaries, I never would’ve realized that things could escalate to what they did until I experienced it. As much as the situation would frustrate me because of the phone calls, the clinginess, etc., I still miss him as a friend, but also I don’t want to re-open communication because he’s finally understood I need boundaries and space, and I worry if I try to reinstall communication, that boundaries will be demolished and we’ll be back where we were with him, and I can’t risk a clingy jealous “stalker friend,” and a boyfriend: Life is about choosing and I will always be here if his mom ever needs to get in touch with me, I will always be here to help from afar and here to emotionally support them, but I just can’t risk destroying the improvement he’s made with realizing I need space and boundaries. I will always love him as a friend, and I love all the things I learned by meeting him and him being in my life; it’s just for the best if I don’t ever try to re-establish communication (or so I think. Maybe I am in the wrong, I don’t know.). Another thing I don’t like is that due to it being handled by Lafayette Consolidated Government, the camp cannot hire former campers (however they can volunteer) due to liability issues; who would know how to run the camp the way campers would enjoy it more, than a former camper? I just think it is unjust and unfair to former campers who have the mentality and responsibility, but just a physical disability, or a slight learning disability, but whatever.
Even now, when I am grown and in college, I continued to go to Camp We Can Do occasionally, but not as a camper anymore; now as a volunteer counselor because I can offer something other counselors can’t, Empathy; because I was once like them, new to the camp, scared and nervous, wanting to be accepted; I could share my experiences and give them advice. I could be like a role model they could come to, and I could provide a memorable experience for the future campers, so they will have fun and want to keep coming back like I did. However, that did not pan out because I didn’t mind not getting paid or the liability thing as much as what happened when I became a volunteer: I didn’t have to be there, I wanted to be there to help, but none of the other counselors (the ones that actually were hired and got paid) took me seriously: They never let me do anything to help or they picked minimal jobs (I guess out of fear of me getting hurt, I don’t know). I would go complain to the director and it was like she wasn’t listening to the problems I was having and it was like she would just tune me out when I tried to present an idea. Another problem I had was the kids; I understand it is odd having someone your height telling you to do stuff, they probably thought I was just trying to be a counselor, but on the first day, the director even presented me as “a volunteer” and to treat me as such; well no one did that: Not the campers, not the other staff, not even the director herself. As much as I miss my campers that held special spots in my heart, and I loved what the camp stood for, but it wasn’t worth the stress and the aches in my back from the stress: It was obvious I needed to move on from Camp We Can Do, and I have; although I still do keep in touch with a few of my special campers that have my heart.
The “dreaded” Corona Virus has now reached Louisiana. As of yesterday, there were 33 presumptive positive cases of it. For over a month, it’s been “Corona this, Coronavirus that,” to the point, I want to shoot myself if I hear CoronaVirus one more time. Even worse, now schools are shutting down, events are being canceled, and stores are running out of items- especially water and toilet paper; it is an illness people, not the end of the world- Practice good hygiene and handwashing, stay home if sick, and just sanitize if come in contact with sick people. It is that simple.
the news media and politics are causing a panic and the sheeple are falling for it. This Coronavirus is just like a really bad virus/cold or flu, yet they stockpiling and shit like its the end of the world, shutting down schools…if you sick, stay home but this is going into borderline craziness. Smh.
Every time a new sickness comes out..its always panic with politics and news media: Swine flu, Bird flu, West Nile, Mad Cow disease, Ebola, now CoronaVirus. Seriously people just practice good hygiene and if you sick, stay home. Common sense. Don’t be sheeple. Yet, we don’t shut life down for flu or regular viruses and people go in sick all the time and get others sick. It doesn’t make sense.
As a child with a physical disability/deformity, you would think I would be cautious and careful, right? Wrong. I was always running around, hyper, cutting up, showing off; I didn’t know the risks of my behavior.
In 2nd grade, I had bent down really quick to pick up something off the floor, after a sleepover and instantly I fell to the floor holding my side; I had pulled a muscle. My friend ended up having to go home early and I had to lay with a heating pad on my side for the rest of the day and the next day (I think).
After that incident, you think I would’ve slowed down and been more cautious, right? Wrong again. I was still running around, hyper, cutting up; being a typical child. Mom and I were in the neighborhood one time, I was riding my scooter; we decided to race and when I went to put my foot back on my scooter after pushing it really fast, my shoe lace loop (the loops you tie) got caught on the knob part of my scooter that adjusts its height, and I fell over, scraping my knees; I couldn’t even walk.
Still, did I learn? Nope. There were times I fell just by walking on a handicap ramp after rain in new sneakers because they didn’t have “traction” yet and ended up with a giant bruise on my tailbone, burnt bottom of my foot by walking barefoot in the backyard and stepped on dad’s cigarette butt, splinters in my foot, ants in my pants from sitting in grass near a pile, I been there and probably done it all, but the worst one was in 9th grade when I broke my collar bone. How did I do that, you may ask? Well, let me just begin by saying “Never wear skates in the car.”
I had gone to a skating rink birthday party, and afterwards, I was still in “Skating mode,” where I still wanted to skate, but the rink was closing for the day; Mom let me wear my skates out to the car, so that when I got home, I could skate on the driveway. When we pulled up in the garage, I went to get out of the car and lost my footing; I grabbed the handle to “catch myself,” and felt a sharp *POP* I instantly let go and fell on my butt on the ground. I screamed and cried because it hurt so bad; I couldn’t even get up on my own to take my skates off. Dad and my brother had to come out and help me; one of them took off and saved my skates while the other took me in and put me in my bed. After going to
the orthopedic dr., I found out I had broken my collar bone; I had to wear this strap thing that looked like a bra for your spine, for like the rest of the school year (March-May); at least, I got out of P.E. (not that I needed an excuse, once I got passed Jr. High, they never really pushed me to participate.)
Yes, with a disability, you want to do everything that other people do, you want to fit in, you want to be “normal,” but you also need to stop and think about the risks, weigh the pros and cons, before you do anything. I’m not saying, live your life in fear of doing activities, all I’m saying is slow down and think, do what I didn’t. Learn from my mistakes.
The Girl Scouts of America promotes character, outdoor activities, good citizenship, and service to others. As a child, I was a girl scout; and one of the top cookie sellers, thank you very much. HAHA! I joined girl scouts when I was in kindergarten. A few weeks into the year, our troop was about to get broken up, because our troop leader was moving or something, so they called a meeting and asked for volunteers to be leader; desperate to keep my friends and me together, I picked my mom’s arm up, and she got stuck being leader. Sorry, Mom for that! I enjoyed girl scouts, it was a fun way to keep up with my friends: we did crafts, went on outings, etc. Since mom was the leader I thought I’d get away with a lot; but, boy was I wrong! If I tried to pull a stunt, like not do an activity, etc., she’d pull me aside and fuss me/correct me. I’m not complaining, I wish she’d have done that more to help me face fears, instead of just doing activities I didn’t want to do due to laziness.
I loved it when it was cookie-selling time; I have always been very competitive and since I don’t have the physical ability to do sports, I do it with stuff like this, or games at the fair/games at Gatti-Land, and now the casino. When it was cookie-selling time, Mom would take the sheet to work, I’d go in the neighborhood, ask family, etc., just like I’d do for school fundraisers; I was very driven to get those prizes! It sure helps when you know almost ¾ of your hometown and you are a social “butterfly”.
In Girl Scouts, they also would have tea parties (I loved the cucumber sandwiches), holiday parties, we once slept over at the church hall, a lot of really fun memories; well, except the campout in the backyard, that was miserable. We got eaten alive by the mosquitos!
In 4th grade, we stopped girl scouts, because mom started working full time, and no one was willing to take over our troop, so it just fell apart. It was kind of sad because it gave me a sense of “normalcy” of a girl’s childhood, but mom always found a new activity for me to keep me entertained.
I sure do miss those days of cookie selling, earning patches, and being competitive; it was those days, I hadn’t realized I was different because I was surrounded by friends who treated me just like everyone else. Girl Scout forever!
It was on a trip to New Orleans Children’s Hospital for an orthopedic doctor appointment we were stopped by state police for speeding. Never before in dad’s life has he ever gotten off with just a warning. The officer was a Shriner. He gave his business card to my parents and told them about the wonderful work of the Shrine Club, which is free to families. After a few more visits to New Orleans doctor, they decided to get a 2nd opinion. My parents wanted a 2nd opinion because the private physician kept changing his mind about when surgery should be performed. I was starting to pull up. He bounced back & forth as to waiting until after I started to walk or before. They didn’t feel he was confident about what would be best for me. Mom called the local Shrine club; 2 very nice gentlemen came out the following day with paperwork and took pictures of me. Shortly thereafter I became a Shriners Hospital for Children-Shreveport patient. Shrine doctor decided it would be better before I started walking. Why wait? It had to be done anyway. Mom and I went to Shriner’s Hospital in Shreveport, LA a few days before surgery. Surgery was done at Christus Shumpert. I had to stay on my back in ICU for a few days. My parents had a room in the hospital with the freedom to come into ICU anytime to see me. The 1st night after surgery, I rolled onto my stomach and got up in crawl position just as mom walked into the room to check on me. I was being monitored in the nurse station. My nurse came running into the room to put me on my back; Even back then, I was such a little rascal and terrifying the nurses! LOL. After a brief time in the hospital, I was discharged with a cast around the torso area. The cast had a hole in the stomach area around the belly button. I complained about itching inside the cast. Dad would vacuum inside the cast using the long nozzle.
Shreveport is about a 3-hour drive from my home. I remember those trips to Shriners Dr. appointments so well because they were so memorable. During these trips, we had a tradition of going to the mall down the road afterward for Lunch at Piccadilly and then shopping; I especially loved going near Christmas time or Valentine, because I could get holiday shopping done.
Since it was a 3-hour drive, we often left my house extremely early; sometimes when I was much smaller: I’d pack a bag the night before and my parents would just load me up while I was still asleep in the morning. I was so small, I could slink down out of sight and change in the backseat of the vehicle. We’d often stop at McDonald’s to get breakfast; which mom and I often split the “Big Breakfast” and if there was time, she’d let me play in the playground for a tiny bit. Upon getting to Shriners Hospital, Mom and I would go sign in, and then I’d run off to go play in the waiting area and, of course, make new friends with other children. As I got into the preteen years, I no longer wanted to play with the pretend kitchen set, and would watch the movie they had on or go on the computer to get on Myspace or whatever; sometimes while waiting, I’d go to the cafeteria area and get popcorn or a cookie or a soda.
Once they called me to the back, we’d go straight to “weighing” and then to X-ray. I remember when I’d get weighed, they would often tease/joke with me because I hadn’t gained much in 6 months and they’d jokingly ask “does your mother feed you?!” To which I would laugh and say “yes, I eat like a horse; it just doesn’t stick to these boney hips!” (I also had really bad stomach problems so everything would pretty much go right through me.) In X-ray, I knew the routine of how they wanted me to stand: Back facing them, arms wrapped around something a metal box thing, feet slightly apart. I always got stickers and a stuffed animal/toy if I behaved in X-ray right away, instead of sometimes being mischievous and acting like I didn’t know the routine. After X-ray, it was to go bring my X-rays to the nurse/doctor meeting lounge area and then go sit up front and wait to be called back to be put in a clinic exam room to see my Dr.; Dr. Richard McCall.
Upon getting placed in a room, there wasn’t much to do in the room and sometimes he would take forever, so I’d go in the hallway and peek into the nurse/doctor lounge and giggle, spying on them while they looked at patients’ x rays, playing peek-a-boo: hiding when they’d look my way; Sometimes, I got caught by the nurses/doctors eyesight, but half the time, they’d just play along. I could always tell which X-ray was mine and I would sometimes go right up behind Dr. McCall while he was looking mine over and I’d point out “that’s mine!” and would trace the curve outline with my finger: He was so patient with me and my fascination; he’d sometimes sit me on his computer chair, and show me where the Scoliosis started and his ideas for future surgery “Once you go through puberty, “ yadda yadda yadda, a plan that never went to full fruition during my Shreveport checkups because my body had waited so long to “go through puberty” and the risk of paralyzing me was too great according to him when they discharged me at 17.5 years of age.
I remember one time, I think it was coming back from a checkup appointment, I for some reason stuck my head under mom’s driver seat of our Ford truck; she had to pull over because I got my head stuck. Why was I such an odd child?
I had to wear a body brace due to my Scoliosis. For those who do not know, bracing is sometimes a treatment for Scoliosis patients. I had to wear my brace from 2 years of age, until 8 years of age, when the doctors decided the bracing wasn’t helping; it might’ve been because I’d “pull a Houdini” and escape out of it. I despised that brace: it was hot, itchy, and so uncomfortable; when I’d take it off, I would scratch my itchy body for like 15 minutes straight. The undershirts for the brace, that were supposed to help, didn’t help that much. The only reason I liked my brace was that I had protection if someone hit me in the stomach area and because I had a place to put all my stickers. The worst part of the brace beside the itchy hotness of it was being molded for a new one. Being molded for a new brace was the worst because they use plaster of Paris or something like that to make them, and when they mold your spine, it gets hot and burns: I only remember being molded for a new one, once; I cried and screamed, throwing a tantrum, saying I hated them, until afterward when I got a toy to cheer me up; I named the doll “Cynthia,” because I was obsessed with Rugrats at the time, and it looked like Angelica’s Cynthia doll.
It didn’t do much good for me, so I was able to discontinue the brace after age 8. I had lots of memories of my brace.
There was a “game” I liked to play with my mom. I called it “Suitcase game” where mom would hold me by the straps of my brace and swing me in the air like I was a suitcase. How anyone never called child protective services, I will never know. Another memory was one of my mom’s favorite memories of me in my brace. They had Velcro straps on the back of it and Mom thought it was out of my reach. This memory shows another factor in my determination. We happened to be going somewhere and I was asleep in my car seat. Mom says I sat up in my car seat, eyes still closed. She says I reached behind myself, undid the Velcro straps, then proceeded to stick my arms into the brace, and push it away from my body; Escaping out of it. She says, before that happened, she would not know how I’d escape out of it because I would be put to bed in it, and when she’d come in the next morning to wake me up, I was out of it. Now she knew; somehow she always discovered any of my secret tricks! I eventually always got busted! HAHA!
I didn’t like my brace because when it was very hot outside, I would sweat and it’d start to itch, but other than that it didn’t bug me that much, except after eating because I always had stomach aches after eating. I did however like it whenever my body would get put in dangerous situations: my brace would’ve protect me: When I fell and knocked out my front teeth, I didn’t hurt my back because I was in my brace; When I had a girl that thought I was a baby doll and would carry me around, she dropped me one day, the only thing that got hurt, was my butt because my back was protected by my brace. Even though I hated it as a child if I had it on maybe I wouldn’t be so achy all the time now. I don’t know, just kind of wish I didn’t have the aches I am having now—Old Age Sucks!
Today we did some more training with the retrieval of the coke bottle, basic commands, and started “clean up” for her toys so I don’t have to bend down to pick them up.
Originally I had been training Beignet to be a service dog and eventually with all my pain from broken rods and then surgery recovery, It kind of fell by the way-side, however, I am getting back into it. Today We started training to try to get her to retrieve coke plastic bottle for me (in case I dropped it or something).
As someone with a disability, the future is always uncertain and scary. I have always had doubts and questions about what I could do as a job or career because anytime I get sick or have a pain day and end up in bed, the worry and doubt come in; “How will I work? No one will want to hire if I can never go into work!, How will I function at work with pain if my pain meds knock me on my butt and make me tired?” On and on, the worries come in and circle in my head until I am an emotional, anxious mess.
That is the beauty of at-home businesses; you can be your boss, control when you work, your work can be done from a mobile device or computer, etc.
Avon is technically not new to me; my Mom used to sell it when I was in High school and I did help her by promoting them at school. I enjoyed it and I am very social when not in pain, plus I know how to use my social media outlets to my advantage.
Hopefully, I will have luck with it 🙂 Anyway, if interested in ordering with me here is my website https://www.youravon.com/jcormier
Wish me luck! ❤