peeks into my life dealing with everyday life and obstacles as well as obstacles of dealing with disabilities and accessibility obstacles, Chronic Pain due to broken spinal rods, living on pain medications, dealing with anxiety/depression, experiencing the newness of love, and fighting for my right to live and love my life in an ableist society.
I have always had a habit of biting my fingernails ever since I was a small child, and when it came to scabs I would also pick my scabs (a lovely habit I picked up from my dad), but as of late (the last few years) I started pulling skin that cracks and peels around my fingernails, my fingernails when they crack/chip, and as of late I had a scab on my forehead that I picked at to the point that it is becoming a deep open wound. I had to put Bacitracin on it to keep it from getting infected, but when I am “bored” or my anxiety acts up or just my OCD saying “hey you have a wound on your head, pick at it,” there goes my fingers starting to pull at it again. I really wish I could stop this. I need psychiatric help. The only thing that helps distract me is my wonderful dog, Beignet.
Being from Louisiana, I know a good party; and Mardi Gras season is not just about partying before Ash Wed. and lent season; No, not at all: to a child, Mardi Gras is a magical time where beads and candy are thrown from parade floats, getting tons of junk from vendors peddling carts that you don’t need but want, music and bands that you clap and dance around to. When you are a pre-teen and think you know everything, you go off by yourself with your friends (at least in Lafayette daytime parades). As an adult, this is not nearly as fun because you get pelted right in the face, (whereas when you are a child, the adults catch the beads, and if you were as spoiled a child as I was, many adults would catch and give beads to me.), when you have whiney kids begging and crying for the junk on the carts (karma is a butt LOL) or because they didn’t get any “catches” from one float or any “good catches” like toys and such (and for some strange reason, at least in my case, the older I get, the worse my anxiety and nerves get). Then there is also the yummy sugary goodness of the season also known as King Cake! YUM! King Cake is Mana from heaven itself (LOL Just kidding); in all seriousness, King cake is is a ring of twisted cinnamon roll-style dough topped with icing or sugar, usually colored purple, green, and gold (the traditional Mardi Gras colors) with food coloring. King cakes may also be filled with additional foodstuffs- the most common being cream cheese, praline, cinnamon, or strawberry, etc. King cakes also usually put a little plastic baby in the cake to represent baby Jesus; and in Louisiana, the person who finds the baby is required to purchase the next king cake.
Mardi Gras was so much fun for me as a child and I have many humorous stories about it. When I was a young child, Dad worked in Oilfield as a service manager or technician manager at Sola Communications. Sola Comm., as we often called it, would have an area for their employees to pitch a tent (or a few tents) and lay blankets on the ground in front of UL Lafayette’s Maxim Doucet building off of Johnson Street and across from St Mary Street. They would have so much yummy food, mostly BBQ, and chips and such (I had a sensitive stomach so I would usually bring picnic sandwich from home). There was a girl around my age (her dad worked with my dad); I can’t remember her name, but that was my play-friend for the parades: stood together for the parades, catching beads together, when parades weren’t going all (because we were there all day until early evening) we’d play chase or hide and seek from the adults, or we’d go walk down to the “junk on carts” with our money from our parents(She always made sure no one shoved or pushed me by accident, or any other way that I could’ve gotten hurt.) we just had a lot of fun together.
I remember one year specifically; I was in second grade, I believe: A lot of things happened that one year: My brother spray painted my hair green, I got a lot of beads (thanks to Jared, his girlfriend at the time, Dad, and some of Dad’s really tall co-workers). Dad scared the “be-jeepers” out of me, and Mom got so drunk that Dad had to put the child lock on the windows.
I remember we had 3 cans of colored hair spray: Purple, yellow, and green; I wanted purple, but Jared (being the jerk that he was at the time) thought it’d be hilarious to give me green hair instead; I was a brat, so when I saw what he had done, I had a full on meltdown: crying, hitting him, throwing stuff at him, etc. Mom was the same way she is now, “Jamie, it isn’t that big a deal,” (and I agree with her now that I am an adult), but I’ve always been one for being melodramatic about stuff (I’m a girl so of course I’m dramatic!)
Dad always loved to get me “all wound up” and aggravated (I honestly think, he believes that it is his one job in life), but this one year when I was in second grade, he honestly went overboard or maybe he was trying to teach me a lesson, I honestly don’t know; but, anyway, my friend and I were running around playing hide and seek behind the pillars near Maxim Doucet building: I had my back turned and was looking around, Dad somehow snuck up behind me and put his hands over my mouth like he was a kidnapper! (Talk about scary, right?!) I wriggled and kicked and squirmed, crying my eyes out; once he brought me near our spot, he put me down and turned me to face him. I was so upset! I was calling him a jerk and all kinds of stuff. He told me “that is how easy it is for someone to kidnap you! You weren’t even together (talking about me and my friend); separated from each other, makes it a lot easier to kidnap one of y’all!” Let’s just say, after that incident, I never wandered off too far without my friend being next to me.
On the way home that same evening, Dad had to put mom’s windows on Child lock. She had been drinking crown Royal Whiskey all day and was totally drunk! She must have thought she was in a parade or something because next thing we all know, she is throwing beads out of her window, into the tailgates of pickup trucks and pissing other drivers off: and making me cry in the backseat because she is throwing all of “my purple” beads; I didn’t care about the other beads, just don’t throw the purple, momma!
That was such a fun and funny Mardi gras, although going to parades with my godfather, his family, and his friends, is a lot of fun too! We once went to New Orleans for Mardi gras in 2006, right after Hurricanes Katrina and Rita—that was also memorable. We took my grandmother, Maw-Maw Verdine Meche with us, there was this big biker looking dude (later found out he was gay –but I hold no judgments against him about that, LOL) the kids and I were bored waiting for the parades, so we broke some old beads we found on the ground, and took the little ball beads and were throwing them at people; this biker dude played along and soon we were having a broken bead war—us against him and his friends. LOL! Another memory which was probably scary for mom was the fact, I kept wandering off to the front of the barricades (leaving them somewhere in the middle); there was this couple who were Latino heritage I think, and they would give me the beads they caught, along with one of the older grandparents who still could move and dance without breaking a hip, would try to dance with the high school dancers ( I think he was pretty drunk!), but we ended up with a lot of beads and “good throws” that year. Do You want the big stuff? Go to New Orleans for Mardi gras!
We are all from Louisiana, so we all pretty much know how to have a good party; Just have the right food, the right music, cute kids, and lots of drinking and king cake….hell, sometimes, you’d think our party was the parade with the lot of us all dancing! Like we say in Louisiana, Laissez Les Bon temps roulez, which is Cajun French for “Let the good times roll,” and in Louisiana, we do just “dat!”
It’s officially December and I am not in the Christmas spirit like usual. Usually, I would be going all out with decorations and such, but not this year- maybe lights and that’s it. Due to moving in Jan. We don’t want to have to haul extra stuff than what is needed. Plus, it will be the first Christmas without Mommie, Mr. Mike James, my cousin Racheal Mary Meche, Ms. Nancy Moticka
It has been too much death in one year; not to mention all the other I care about who isn’t around anymore either- My other grandmother (maw), and then one of the most influential women in my life, Mrs. Evelyn Zehner, “Mrs. Z” from Camp we can do. It’s just so hard… I know there are worse people off, but for some reason I just cannot get into the spirit yet this year. Is it because of not decorating much this year, the financial stresses and having to ask mom to loan money for us to buy Christmas gifts until David can find a job? I don’t know. Just tired of always being miserable. I can’t remember the last time I was sincerely happy for more than a few hours.
😥 I don’t know, I just been depressed all day today. Hopefully, I can get out of this funk. Prayers appreciated. I hate it when I get depression.
Warning: I am about to be really emotional and sappy. Mrs. Z, The director of Camp We Can Do until 2010, has been on my mind a lot lately. RIP. I miss her so much and she was a major influence in my life…
Imagine: Being an 11 year old girl with severe physical limitations due to Severe Kyphosis/Scoliosis and Ehlers Danlos Syndrome. Imagine feelings like you don’t fit in anywhere and that even though you have friends, you constantly question whether your existence is just a burden on your loved ones.
Imagine: Starting a new scary adventure; a summer camp, Something I had never done before aside from daily VBS for a week at Church. Even though, I knew that it was for Special Needs individuals like me, I still was stressing. I remember going shopping with mom for summer clothes; constantly coming out of the dressing room in each article of clothing, asking the same repetitive question “Does this hide my curve? Does my stomach in this? Do I look ‘Normal,” and God forbid if something I liked didn’t look good; Talk about “Dressing room Meltdown!” of locking myself in the dressing room, beating myself up by hitting myself in the face, on the arms, crying my eyes out because I just wanted to be “normal.” The first day of Camp finally arrived and I was so nervous and scared, I didn’t socialize with anyone, I kept to myself, and didn’t want to participate in any of the activities except kitchen and arts and crafts. When the camp group activity (where the whole camp got together to participate), Mrs. Z Noticed I was not participating and when she tried to get me to participate, I cried like a little baby brat about “I don’t wanna,” and “What if they laugh at me?” It’s like come on, they have special needs too. Why was I so self-absorbed? So ignorant? I am so embarrassed was back then. Mrs. Z let me skip that first day group activity, but we had a “come to ” talk where she explained that I would eventually have to participate and try to make friends, that no one would make fun of me and if they did, they would deal with her. Thanks to her and camp we can do, I came so much out of my shell (at least there) and did things, I never would’ve done anywhere. I did the talent shows, the girl makeovers; I made wonderful friendships, and even volunteered as a counselor after I turned 18. Had I not met Mrs. Z who pushed me to realize I was not limited by my disability, that I just had to find an alternate route and the statement/Motto of Camp We can do, “Yes We Can!” Had I not met Mrs. Z and the wonderful staff who were encouraging and supportive of the campers, I don’t know how I would’ve turned out. Yes, my mom always encouraged me, but I always figured “She’s my mom. She has to say that.” Coming from others, it’s a confidence builder? I 100% confident and in who I am? No. I still have some work to do, but without Camp We Can Do, (and Shriners in St Louis later on), I don’t know what my life would’ve been? I don’t think I would’ve flourished the way I have since starting Camp We Can Do and meeting Mrs. Z. She pushed me out of my comfort zones to explore other aspects life. I wish she was still around to witness my life and accomplishments, but I know she is watching over me, and hopefully I am making her proud. God bless you Mrs. Z, (and I am tearing up writing this), I miss you so much! There is so much I wish I could just talk with you about. I love you and hopefully, I can make you so proud of me. ❤ ❤
There once was a lady who was sweet and kind, She worked at Camp We Can Do, For quite some time. Her name was Evelyn Zehner,But to the campers at Camp we can do, Her name was “Mrs. Z” And she was loved by every camper, Including me. She never saw a handicap or Disability, She only saw children, who wanted to have fun, But could also be held accountable for every misdeed. She treated us all “normal”, Never made excuses for us.But loved us so much, that was evident. We were all her babies, Like a parent, Even when we were misbehaving, she still loved us. Every Morning we were given “good morning hugs,” Right as we got in the door, running into her open arms,We loved our “Mrs. Z,” Sometimes, we’d get in trouble just to go sit in the office with her; Or others, like me,Would just sneak away from group and peek into her office, Until she would catch me, I can still hear her saying,“Okay Jamie, I need you to go back with your group.”It was said so often, it should’ve been stamped on my forehead. The days always ended the same,As children’s rides would arrive, the kids would hug Mrs. Z tightly, She’d squeeze them with lots of love, And tell them “Rest well for more fun tomorrow.” Or “Have a good weekend,” Whatever the case would be. She knew what the kids were capable of, What they knew, how they knew how to play “sympathy card,” She was tough, but she was loving; Firm but Fair. She was big on teaching life skills. She knew these kids, That others counted out,Could learn these life skills, And prove something to the world;That they could be something with the right dedication and discipline. Sure some times, her methods seemed extreme and harsh, Maybe “too hard,” on kids who already “had such a tough life,”But I cannot recount a single kid who ever held a grudge;They always would hug her, and still knew her love for them. We learned how to cook in the kitchen, There would be people who came in to read stories to us, People who came to teach us healthy eating, nutrition, hand-washing, etc.We’d go to library, museums, They would teach us how to do grocery shopping,She knew that special needs couldn’t always learn just from textbook and memorization, We also had to go out and experience it, And of course, try and fail over and over till we got it. But she never gave up on us; she never counted us out, Ever! Sure, she is gone, And we are all sad, But her legacy will live on, In the memories and love,The impact she had, On thousands of lives. Fly High, Mrs. Z, You took care of everyone here on Earth,Now it’s your turn to enjoy some pampering,Up in heaven; you have definitely earned your angel wings, Sweet woman. Long Live, The advocate, the disciplinarian, and second mama, To everyone, especially children and parents from Camp We Can Do.
It was in 2008, when we went to Kemah boardwalk for the Camp’s big field trip. I wasn’t riding any of the rides; just watching all the other campers having fun. Mrs. Evelyn ZehnerEvelyn P. Zehner was the one who told me “your parents didn’t pay all the money for the big field trip just for you to be a spectator.” So She encouraged me to try a ride. I got on a tower drop (not realizing that I was terrified of heights), and I never been so terrified in my life, but I also am glad I did it. (isn’t it funny how something can scare you, but you are proud of accomplishing it anyway) Mrs. Z was always encouraging us to step outside of our comfort zones, and really thats what should be encouraged, because if we don’t, then how will we ever find out what we like or are good at …if we are counting ourselves out before trying, or scared to fail, then what kind of life is that? Mrs. Z had that tough love, but sometimes, that is the formula for success…not always the case, but sometimes. I think the lessons she taught us, and what many influential people in my life taught me, has influenced me into the person I am today. Yes, I still have some “kinks” to work out and smooth out, but for the most part, I am proud of who I am and I have Mrs. Z as one person to thank for that.
I have lots of interests and lots of dreams. One is to operate a successful food truck (yes, I love to cook and bake). Another is to get my youtube channel going and inspire those also dealing with physical differences and show that nothing is impossible. I also am interested in writing and publishing books (one being my life story, others being books of creative writing works and children’s literature). I also would like to write for childrens tv and movies, especially including characters with different special needs, I’ve also been inspired by seeing the new creations of dolls with special needs and the creation of clothes for children with special needs…I’d like to help do more of that- more special needs included in the toys, and more clothes/costumes for those with special needs, and have my own makeup/accessories line/ clothing line, etc. Dreamers can dream and dream big.
🙂 But my biggest dream that I’ve always had since I was 3 years old, is to become a mommy
🙂 and my passion since seems like forever, is to help make the world better and more accepting for those with special need- #Advocate and #CharityWork. Only through God’s will and power. God’s will be done.