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.
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.
I try to usually be a pretty positive person, but like we are struggling financially. The mattress in our bedroom is killing both me and my fiance’ backs so need a new mattress (plus I am still paying this mattress off, 4 years later.).
I dropped my laptop a few weeks back and ever since, have been having to use HDMI cable and tv as a monitor because the screen doesn’t wanna turn on and the last few days, the laptop is starting to show signs of dying worse off. (My fiance says he will build me a desktop pc, so hopefully, my laptop can hold off till then or I can afford to get a keyboard accessory for my Ipad Mini tablet. (I will need one eventually when I go back to college classes.) Since then, my laptop has stopped working with HDMI and my fiance’s cousin is looking into fixing my laptop and since its family, I probably will get a discount but will still cost sadly.
Then finally, I feel like I am straining my eyes more and more each day, even with my glasses. I cannot afford to go to LensCrafters (they don’t take Medicaid) at the moment. Sometimes I think I should just bite the bullet and just get the fricken laser surgery, but I am also scared to do it.
I hate ranting and venting, It just gets overwhelming at times…
Also, Shane Dawson, a YouTuber I have been following since the beginning of his career 2008, and Jeffree Star (who I just started following last year on youtube) collabed and made a makeup collection together and I cannot afford it and I am legit sad and disappointed about it. I just miss being able to afford all the things I wanted. But no, I gotta “adult” and pay for college out of pocket, pay for bills, and rent (thankfully after March that will be done..the rent anyway.) Things will get better, this is just a bump in the road. With God at the helm, I am positive we can make it through any rough weather. ❤ ❤ ❤ God’s will be done.
I have a lot of dreams and ambitions, even despite having a severe chronic physical disability/handicap, but with the right amount of patience, determination, willpower, confidence, hard work, and God almighty at the helm of my life, anything is possible.
I will pick one thing at a time and will try to accomplish them all eventually, but one at a time.
Backstory: I was a Shriner’s patient for about fifteen and a half years of my life. Since I was young, all I could remember the doctor saying “We’ll wait until she hits puberty and then see from there about a surgery.” Well, what they were waiting on was to see if my spine would grow. (I had a fusion at two years of age and as my spine would grow, it was supposed to correct itself; well the spine didn’t grow, instead, it kept curving.) When I finally reached puberty, (which was about fifteen or sixteen years old, being a “late bloomer” is so much fun! Not! Haha) the doctors changed the story to “nothing else can be done without paralyzing her.” Well, can you imagine being told that you were going to have this huge hump on your back removed once you became a teenager and hit puberty, then suddenly the story changed and you would now be stuck with it the rest of your life? My heart broke, I cried like a baby; it’s a good thing that one of my besties was there and we went a walk to calm me down. At seventeen and half years old, I got discharged because Shriner’s is a children’s hospital and my next appointment would’ve been after I turned 18 years of age. Since that time I hadn’t been to an orthopedic doctor (almost 2 years), and mom was worried, and she heard good things about Dr. Williams in Opelousas.
My Scoliosis Journey in St Louis, Missouri began on Jan. 2011 after a referral from a local orthopedic dr to go see Dr. Lawrence Lenke (who has since moved his practice to New York,) because my Scoliosis was “too complicated” for the local dr, and “looked like a rollercoaster” (Try living with it, dude!) It usually took a year to get in to see dr. Lenke, we got in within six months!
The initial meeting with Dr. Lenke was very emotional. I really cannot “sing his praises” enough! He saved my life! When he came into the room, he smiled and did the usual doctor stuff: reviewed my x-rays, feeling how uneven my hips were, traced the curve of my spine with his finger, the same old routine to me- I could probably do it in my sleep! Finally, when we talked, I had questions and he answered them politely, honestly, and kindly. There were some I didn’t ask because I am sometimes shy (not very often, but it does happen occasionally: especially if the questions are embarrassing) and were embarrassed by some of the questions. He saw I was hesitant and took the list and read over the questions and gave me answers. He didn’t laugh or make any rude remarks, he made me feel like there were no “dumb questions.” When he was talking he wasn’t saying “if” he could do the surgery, he was saying “when’ so that just filled me and my mom with so much hope that once Mom and I were out of sight in the bathroom helping me change out of the hospital gown, We hugged and both cried it out in the bathroom: Bawling like 2 big babies, but these were different than the tears I shed at Shriners in Shreveport at 17.5 years of age; these tears were happy tears of joy! Mom and I had gotten our hope back! Imagine, being told that you would have this Scoliosis hump the rest of your life and then come to find out, there is actual hope! However, I had a choice to make, take the risk of paralyzing from surgery that could save my life and not paralyze me..or leave my Scoliosis to get worse and end up paralyzing me anyway? I chose surgery, although my dad originally thought it was for “vanity reasons,” however, he realized how bad it was when he saw the model Dr. Lenke had made of my spine before my surgery; his response was “That was in my daughter!!!?”
However the following December 2011, my original pre-op appointment, things were emotional again, but for a different reason. It had been a long day (12 hours to be exact) of MRIs, Xrays, CTs, getting poked with needles for bloodwork, doing a PFT(Pulmonary function test), and finally at 8 p.m., I saw Dr. Lenke. He was a bit more apprehensive this visit; My ribs were twisted around my spine and my lungs were pretty much being crushed by my spine and my lung capacity was 18-20%. He moved up my Halo Traction date to Jan. 5, 2012 and told me I could be in traction for almost up to a year and still possibly not have surgery. So Once again, I broke down crying. However, the next day, I had a visitation at Shriners Hospital St Louis- where I’d be spending time for my Halo Traction stay and the care coordinator for Dr. Lenke, Joetta Whorton, helped restore my hope. She was all, “We’ll get those numbers up, you’ll have that surgery. Don’t you worry!” By the time I left that meeting, I had cheered up about 50% because of her words and all the nice staff, and all the fun I was promised in the recreation dept. Sure I was still apprehensive, and scared, but I knew I didn’t have much choice if I wanted to try to fix my back. I was also excited because with recreation, we had to do weekly projects and I figured it’d be an opportunity to learn cooking and some other stuff I had been wanting to do, but due to being at college before, I hadn’t had time. Another wonderful person I met that was optimistic about “getting my numbers up” in pulmonary was respiratory therapist, Wendy, who even gave me an I.S. to practice with a month before I was due to start traction.
I left my hometown of Opelousas, Louisiana, bright and early January 4, 2012. I left my family and friends and had no idea when I’d be back and see them again (I even stopped to visit my bestie, Amber, before leaving because she had something for me; She was tearing up but trying not to cry and so was I, but as soon as I got into the car and opened her gift and read her card, the waterworks started). I don’t remember what time we finally reached the hotel (Haven House) after our flight, it was dark I know that and had to be up at 4:00 a.m. and be at St Louis Children’s hospital around 5:30 a.m. for the halo placement procedure, but of course, anxiety made falling asleep a challenge, but eventually, it happened, and I did not want to get up to dress in the morning, so I went to the hospital in my PJs; I’d have to put on a hospital gown anyway!
By 5:45 a.m., they did all the pre-halo surgery stuff- weight, height, peeing in a cup, taking my temp, having me change into the hospital gown, etc., etc.. At about 7:30 a.m., they took me to the back (operating room) and started prepping me—IVs, etc. By 8:10 a.m., I was out of the halo surgery and recovering well. I was able to drink some 7up and wasn’t nauseated at all, I just had a really bad, throbbing headache; Then again, if someone was drilling into your skull, you’d probably have a headache too! By 11 a.m., I was recovered and out of Children’s Hospital and made it to Shriner’s Hospital to begin my journey with traction. I did eat some lunch because I was starving, but I had gagging and nausea later on, but later that night, I was up and about socializing at “Great Lengths club” (A thing they have at Shriners for Lengthening devices- Halos, Taylor Frames, etc), eating pizza and socializing with some of the others there who had Dr. Lenke as a Dr. also.
Mom stayed with me until the following Sunday and then she had to go home; That was so hard for me because not only was I going to be alone in an unfamiliar place, I’d have to be “my own advocate” and tell the nurses what I need, but I also had some pain and nausea still from the Halo Placement and I had taken a Lortab for pain which made me sleepy, but I had to be in traction and couldn’t sleep all day long which made me irritable and emotional. For 7.5 Months, Mom traveled back and forth 3 weekends out of the month to stay and visit with me, and then after surgery, 2.5 months with me; God bless this woman I call my mother!
Despite being far away from friends and family in Louisiana, I made many memories and new friends in St Louis while experiencing this life journey. Sure, some nurses and I clashed heads; but most of them, I got along with. Some of my new friends include all the nurses/caretakers at the hospitals…Joetta Whorton, Naomi Thompson, Kathy Blanke, Donelle Sherman–the main four women on Dr. Lenke’s team that I spent a lot of time with, along with all the nurses/ recreational therapists/respiratory therapists(especially my “personal Hitler/drill sergeant,” Marcela Spraul, her respiratory team—Wendy, Stephanie (who no longer working there), Jodi, Terry, Ruby(no longer working there); Many of the nurses: Carol and Pauline (my first two nurses), Dottie, Pam, Lisa, there was a nurse Melissa, a nurse Valerie, a nurse Amy, Nurse Nancy(who was like my best friend RIP dear friend), Tina, Denise, Charity(my “sister” because we bicker so much), Rachelle(no longer working there), and many more! Kate(who’s job I don’t exactly remember the title of LOL- sorry Kate!) and Lisa who was with housekeeping but is now working at Barnes or Childrens of St Louis. Leighton who worked in Pharmacy: he liked to tease me about my LSU tigers and when I’d wear my LSU shirts, and he once brought me a whole Red velvet cake when I joked with hi about wanting it: it was the weekend and he was telling me bye-
L: Have a good weekend Jamie, is there anything you need for a great weekend?
Me: Well, It’d be a fantastic weekend if I’d get some red velvet cake
needless to say, that monday, he walked into my room with a whole red velvet cake and told me “This is just for you, you cannot share with anyone.” However, with the small stomach I have, I had to disobey his orders of not sharing. LOL
I also made friends with the Physical therapists-too many to name, but the main ones—Becky (Shriners), Patti (Shriners), Tim and Rachel (Children’s). All of the staff in Recreation department: Jen, Barb, Kerry, Laura, and the others that weren’t as frequent; they made Shriners stay more enjoyable, entertaining, and tolerable. All of the Xray team, but especially Melissa because we pick, fight, and bicker like sisters. Lol. All of the cafeteria workers but especially Sylvia, Andy, Marsha, Mrs. Ann (dietary specialist) who always went out of her way to get me snacks that the hospital normally didn’t carry. And of course, Dr. Weatherford the psychologist who was often my sounding board for all my emotions 🙂
As I said, lots of new friends and not even done, sadly due to all the meds and time that’s passed, I have forgotten some names of the ones I didn’t have as frequently and feel so guilty for that! 😦
I also made many of new friends in fellow patients: Sechaba Kershner, Blake Zaunbrecher, Nicole Rodman, Kamille (can’t remember her last name, sorry ‘Mille), Heather Langley, McKenzie Burke, McKenzie Miller, Jeanette Salinas, Elora Pasley, Ali McManus, Courtney Mashburn, and some other fellow patients and all their families. I also made special friends with my dentist back home’s brother and sister- in- law, Mr. Steve Chachere, and Mrs. Denise Chachere; they took great care of me when Mom wasn’t able to come up to St. Louis to be with me, they took me out on out passes, and just made me feel part of the family. A few other new friends I made were from the group Cabela’s that came to the hospital once a month to do crafts with the kids; Mr. Mike James(RIP), his wife Nancy, and Beverly-Barney-Duvall (and I later made friends with her husband, “Doobie”.) Mr. Mike and Mrs. Nancy came a few times to see me after my surgeries at Children’s Hospital too. Beverly and “Doobie” hosted me in April 2014, when I went to St Louis for a visit and not a medical appointment. They also hosted Mom and me in August 2014 for a medical appointment/ as well as a “reunion” at Shriners Hospital for their 90th anniversary/birthday thing. I love you all and I don’t know what I’d do without every one of you all in my life! ❤
During my long seven-and-a-half- month stay at Shriner’s Hospital of St Louis, there was some staff I clashed with, but for the most part, I got along with most of them. I would give each of them a personal shout out, but that would take a book in itself; so many wonderful staff and precious memories, so I will just name a few so you can get the idea of how awesome the hospital is.
One staff member that I loved to give a hard time was the respiratory therapist director, Marcela Spraul. She had a specific way she wanted my respiratory therapy done and I didn’t like her way; I found it more difficult and I was proud of my way because I got higher numbers. One day I told one of the respiratory therapists that worked under her, “Thank goodness, it’s not Marcela; she is like the Hitler of respiratory therapy!” Well, let’s just say word got back to Marcela of what I said; guess who was not only my wake up call but also my respiratory therapist for the rest of the week; Karma is so funny….not! *rolls eyes*
Marcela may have been tough, but she was fair and she also cared a lot for all of her patients. She would tell the parents, “When they are here, they are my children also.” She visited me like two or three times after my surgery at Children’s Hospital of St Louis, which was a different hospital than where she worked and almost a 15-minute drive away from each location. (My only regret is that I was too drugged up on pain medicine to know if I even interacted with my visitors after surgery.)
I loved to give a hard time to a nurse named Charity; she was like a big sister. She (Charity) always would greet me, “hey trouble,” to which I would reply, “why are you talking to yourself, Charity?” We loved to bicker; it was like having an older sister.
Another staff member that was a major influence on my journey, was my Care Coordinator, Joetta Whorton. Joetta loved to mess with me, but I would give it right back to her. I would sneak downstairs to Outpatient Clinic (where her office was), and sneak up behind her. She, like Charity, loved to give me the nickname “trouble;” Hey I accept it; I am trouble…..sometimes. Despite her calling me “Trouble,” I know she loved and cared for me because when I had my broviac central line procedure, she was going to stay with me since my mom wasn’t up there with me. To Joetta, You are an important asset to the hospital all the years you have been there. You’ve changed millions of children’s lives just by being a care coordinator; you are like a second momma to thousands of children. When you had retired for that short little time, I felt that the future Shriners’ patients were losing out on not knowing a terrifying (just kidding…terrific), warm-hearted, funny, fun, and caring woman; that you would be greatly missed by those at Shriners, and I was worried about miss seeing you in the clinic when I go by Shriners to visit. But, that wasn’t the case; I kind of had a hunch that you would go bat-s**t crazy in that house with nothing to do! LOL. I always hold the memories of Shriners in my heart. Especially sneaking off the second floor to go harass you in the clinic. I remember I had gone to lunch with Dr. Weatherford one time and Joetta had been looking upstairs for me. She comes in the lunchroom and said: “I’ve been looking all over for you, trouble.” To which I replied, “And I’ve been avoiding you!” LOL 🙂 That was during one of the first few weeks I was there.
As much as they gave me heck, tried to “push my buttons,” I gave it right back to them! Can’t keep this girl down; She is hell on wheels! HAHA! Now, years later, Shriners Hospital is no longer on Lindbergh where it was when I was there: They have moved locations and the move cost some their jobs, and a smaller facility. I am not happy about their location move, but if it helps more children and keeps up the mission that Shriners was founded on, then I can’t complain; Plus the new facility is nice looking, but it’s just not the “Shriners home” I had for 7.5 months and visiting my Shriners people who are still employed there, it makes me a little heartbroken because some of my people have left and I have no way of contact with them. (Cue the sad music and tears, LOL.)
Surgery and more: On August 16th, 2012, my life took a turn and changed forever. “Why?” You may ask; well that was the date of the first phase of my surgery and the beginning of a long journey. The surgery was a long 12 hours under anesthetic; there was a problem with the Broviac central line: one of the lines had been cut, days before, and the anesthesiologist was worried about the clamped/cut port, so they had to remove it and put in a pic line before starting the surgery. The first two and a half weeks post-Op were difficult; I pulled out my breathing tube, got a bad respiratory infection, got pneumonia, and ended up having to have a trachea inserted; which was still inserted when I returned home on October 15th, 2012 and was removed on February 21st, 2013. The second phase of surgery was commenced on September 20th, 2012. This surgery was shorter and I was only under anesthetic for six hours. Fewer troubles for this surgery (PRAISE GOD!)
Despite the pains and struggles, I had to get up out of the hospital bed and do therapy. No matter if I was crying and hurting; I had to do my therapy, walking with the walker, and using a ther-a-band to build up leg/foot and arm muscles. Some people might say: “How heartless are those people?!”; “That girl was in pain!” but my mind thanks them. That pushing has been the fiber of my being throughout my entire life; it is what has made me become the successful, independent person I am. Without that pushing, I might not have graduated high school or gone to college or even had the urge to do this surgery.
During the recovery time after my surgery in 2012, I had a lot of issues: I had pneumonia right after the first surgery and ended having to get a trache, I pulled out my breathing tube, I had a terrifying nightmare while I was sedated for 2 weeks straight(Due to pneumonia,trache, etc), I had a seizure due to a mucus plug, They thought I had C-Diff (a type of infection), and then after the second surgery I had developed a pressure sore. You probably read all that and think, “Damn, this chick has been through hell and back,” but there are other memories that I’d like to go more in-depth with at this time.
During my time in the hospital between surgeries, I had very odd dreams probably due to the heavy narcotics I was on.
The scariest dream was after my first surgery, mom says some parts of it are probably things I overheard during those first two weeks; it’s a dark living room setting, nurses and student nurses are surrounding me. I was strapped to a recliner and it’s in the bent back position. A funnel is in my mouth and I’m being force-fed narcotics after narcotics. When Mom comes into the room, the nurses lie to her saying “she has become addicted to the drugs, that’s why she is crying and shaking; we are detoxing her,” but as soon as she’d leave the room, they’d turn back to forcing more meds into my system. The last thing I remember from that is watching the monitor beeping and thinking in my head “I’m dying.” Parts of this dream are true, from what mom tells me; the part where I looked at the monitor and said: “I’m dying, “apparently I had done that in real-time too; turns out the nurses had unplugged my pulsox machine and my o2 (oxygen) had a huge question mark on the monitor. Another true part of the dream was when they said I was detoxing, mom claims she said my actions were that of someone who was detoxing, and she said I probably overheard that while I was still in “dream mode.”
I also had trouble with distinguishing dreams from real life; poor mom never knew what to expect to come out of my mouth when she came to my bedside: From Dr. Lenke is a spider, but a good spider, to “I saved Atlantis from drowning;” TV and good drugs just don’t mix, or they do, depending on how you look at it. Some happier dreams I remember having while in the hospital included: Me helping save Atlantis from drowning under the sea, I helped Puss in Boots and Humpty Dumpty, and I even dreamed that Dr. Lenke, my orthopedic surgeon, was a spider, but he was a good spider; not a bad spider that bites people or lays eggs in people’s brains when they are sleeping … Hey! Maybe that’s how I helped Humpty Dumpty, maybe I took him to see Dr. Lenke the spider to put him back together again; I guess the world will never know, what “Spidey” powers Dr. Lenke could have! HAHA!
Another memory that mom loves to laugh about was the “I want to lay in the bed like a normal person,” meltdown. I had PT twice a day, but due to all the equipment, one day, they had to move my bed, to get me out of my room. When we’d return, they’d put me back in bed, make sure my body was aligned and straight, asking “are you straight?” Well, I was high on pain meds, so the only way I could tell was by looking at the ceiling, and if the tiles were straight, then I was straight, but due to my bed being crooked that day, the tiles were crooked despite my body being straight. I told them “no,” so they kept trying to adjust me, and asked me again and again, “are you straight now?” By the third time, I’m getting frustrated and emotional, I snapped. “I JUST WANNA LAY IN THE BED LIKE A NORMAL PERSON!” Tears streaming down my face, and I’m starting to hyperventilate. Mom tries to calm me down, “Jamie, we are working on it, calm down…it’s okay.” She notices that I’m looking up at the ceiling and once again she laughs as she tells PT why I am not straight.
Another memory was closer to discharge time when I had that pressure sore. Dr. Lenke would come in at the early hours of the morning to do his rounds. He’d come in, roll me onto my side to look at the pressure sore, then take notes, then leave. One morning he was running late, rushed in, and practically flipped me by grabbing the sheet to roll me, quick. When he walked out, I told mom, “I feel like a fish or a hamburger, he just flipped me!” She just laughed cause I was so funny on my pain meds; no filter, but that’s me in real life too! HAHA!
During the hospital stay, something was going on in the park across the street called the “Forest Park Balloon glow,” and we had a perfect spot to see it: 10th floor of children’s hospital of St Louis; Too bad I was “high as a kite,” on pain meds and had no interest in it, but mom enjoyed it (Finally something Mom could enjoy for herself and not be “all about Jamie” LOL). We had some friends that we made while in St Louis, who came and brought food to watch with us, the nurses had turned my bed to the window and even raised me almost as high as the ceiling to watch it; but no, I had to be passed out sleeping from pain meds! At least, Mom got something enjoyable out of my hospital stay, the poor woman some days looked like she hadn’t slept a wink! I even told her one day, “Mom I feel sorry for you,” she was like “why?”, and I said while touching her face, “you got bags under your eyes, you look tired!” What can I say, I love my momma.
Also in St Louis Children’s’ hospital, I didn’t have much appetite but they wanted me to eat, so one of the nurses or rec people knew the chef, and asked him to come up and ask me if I was hungry for anything specific that wasn’t on the menu. The joke was he was my “personal chef,” his name was Chef Rob and he went out of his way to help me eat even when I normally wasn’t hungry. He made attempts at Louisiana cajun food and it was pretty good for being out state, had the right amount of seasonings, however, his “rice and gravy” was very skimpy on the gravy, and his “gumbo” was about how we do our “rice and gravies” back home; however, his fried okra was amazingly good. He also made me lobster stuffed mushrooms, YUM! He always went out of his way to make me feel happy and want to eat. Thanks, Chef Rob!
Another funny memory was with Tim, the Physical therapist. We did my walking but also went walk downstairs near the gift shop for some “retail therapy,” as mom calls it. Near the gift shop, there is a fish tank, and let’s just say pain meds and a girl with no filter, watching fish in the fish tank chasing each other, not a good idea for a children’s hospital publicly:
J: that fish is chasing the other one. I bet he’s a female and he’s trying to rape the female.
Tim: Jamie! this is a children’s hospital
J: Oops! Sorry, Timmy!
We get back to my room, and I had this gel pillow thing for my pressure sore.
Tim: Looks kinda like a breast implant doesn’t it?
J: You just fussed me for talking about sex and rape, and you over here talking about breast implants? What the heck, Tim!
Tim: the difference is we are not out in the public where the whole hospital full of children can hear. Just you, me, and your mom
we all laughed. 🙂
Once back home, I still had some pain, but each day I was getting stronger. Even back home, I still have to do my therapy, as well as be careful with how I turn; I can’t twist or turn at certain angles, along with other restrictions. When winter came, the weather changed, and my post-surgery pains got a little worse than I can handle without pain meds … let’s just say, ”Mr. Valium” and I had become pretty good friends.
That long journey that consisted of nine months in St. Louis has given me a lot: It taught me patience, it has given me many new friends to go back and visit with, it has given me a new back and a new body(until I broke those rods and had to have a revision surgery August 2019)–which gives me a good excuse for a whole new look! (Any excuse to shop is good HAHA!) :)
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.