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.
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.
A bad storm passed through Louisiana this week so it has been quite a bit of sleepless nights for me lately and then add in the dreaded once a month bullshit us females have to deal with, adding in stress, anxiety, hormones, emotional roller coaster, all that (sarcastic tone) “fun.” Tonight, I tossed and turned for 2 hours while my fiance’ just lays next to me snoring; sure, I could wake him up and make him suffer with me, but that is selfish plus he works to provide for us, so I guess he needs the sleep more than I do, but it sure would be nice to be able to talk these things out instead of blogging them.
I have a mattress that can elevate the head, it helps with migraines and sometimes my upper back (then I gotta deal with my lower back and hips hurting), but tonight my upper back is hurting and I am not even gonna use the head-elevation because lately it has been making my fiance’ back hurt in the morning; which sent me down the dreaded “rabbit hole” of the uncertainty of a future together: What if I become bed-ridden, what if he has to help me with everything more than he does now? That isn’t what he signed on for! It isn’t fair to him. I know he made a commitment to me and he constantly reminds me of it anytime I start crying and freaking out about how much pain I am in and the fears that sends into me about how uncertain my life and future are; I just don’t want him to have regrets or resentments. I love him, I really do, but when these fears kick in, I go into flight mode and tend to push him away, thinking I am saving him from being stuck in a sucky future with me and my damn disability. How can I expect him to accept it and what it does to me, if I cant even accept it completely myself?
If there was a pill created to make me “normal,” like everyone else in society, I would take it! Even though I also feel like having my disability has made me a well-rounded, wise, empathetic, compassionate, supportive, loyal, passionate person. Does it make me a bad person? Why is it I can be a support system and cheerleader for others with disabilities but yet I cant even accept myself completely? Does it make me a hypocrite? Maybe its just the pain talking; well the pain and the damn devil. I need to really work on myself and loving myself for me; whole-y and completely. Maybe after my surgery to fix my rods, maybe my pain will be better, and I can start being happy again. One can only hope.
If you don’t know who Gypsy Rose is by now, you must be living under a rock or don’t watch any media; between the Dr. Phil interview with Gypsy in 2017, Hulu’s recent docu-series “The Act,” HBO’s documentary “Mommy Dead and Dearest,” etc. Gypsy Rose was the girl who had many “disorders” and “life-threatening conditions,” according to her mother, Dee-Dee Blanchard. They received donations,free housing, trips, etc. due to Gypsy’s “conditions.” Only things aren’t what they appear. Gypsy was a victim of Munchausen Syndrome by Proxy. Her mother, Dee-Dee, forced Gypsy into a wheelchair by the time the girl was 7 years old and subjected Gypsy to many unnecessary invasive operations and procedures. She had Gypsy on a feeding tube and mixed many medications into the tube. Some of the medications side effects simulated the symptoms of some of the disorders that Dee-Dee claimed Gypsy suffered from. Dee-Dee also never left Gypsy alone with anyone. She told people Gypsy was mild-moderate mentally retarded” and had the mind of a “seven years old,” I think was what was said. She coached Gypsy to not say a word at doctor checkups, and despite CPS investigating Gypsy was too scared and coached to reach out. By her teen years, she began sneaking around when her mom was asleep. She knew she could walk and would sneak around at night, eating sugary treats and drinks despite her mom saying “Gypsy is allergic to sugar,” (why then would it be in the house is my question), and Gypsy would sneak makeup tutorials, research kissing, boys, etc. She made a fake Facebook and created a dating profile. She eventually met and secretly texted guys. She just wanted a normal life away from her mother’s control. Eventually, she met and convinced Nick Godejohn, her secret online boyfriend, to help kill her mother.
She was desperate. How would you feel? Knowing you were perfectly healthy, knowing you could walk, knowing that if you disobeyed how your controlling mom wanted, she’d react in anger and sometimes be physical?
Gypsy got 10 years on a Second Degree Murder Charge. The system failed her, she would run away, but her mom would track her down and sometimes tied her to the bed. Her mom charmed and lied. From the outside, she seemed like “Number one Mom,” because she seemed so attentive to Gypsy’s needs, but really she was a monster and abused the girl into lying. Yes, Gypsy did plan to murder her mom, but to be honest, no telling what those meds did for years to mess up her mentality, plus the “lines of morality” were blurred by her putting on this charade for so long. Frankly, Gypsy is a victim of the system. She needs therapy and mental help from the psychological and emotional abuse that she went through at the hands of her mother who is supposed to have been her protector not her tormentor. Gypsywas desperate and it was the only way she saw she could escape her mother’s clutches. Please sign the change.org petition, https://www.change.org/p/missouri-governor-free-gypsy-rose-blanchard/psf/share?share=1 Because she doesn’t belong in prison. She was a victim.