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My English Paper- The Lights of My Life (March 2010)

The Lights of My Life

Everyone has numerous roles they play in life. The roles I play “send light to people in darkness,” while for me, it’s just what I love to do. The roles I play are best quoted from a close family friend and her family, “Her role is comforter, supporter, friend, evangelist, sisterhood, etc., in our lives and we love her for it.” These roles, along with others, are very important and I take all my roles very seriously.


The role of playing myself is played simple. I am a child of God and try to act as such. People have said I am such an inspiration to be around because I am “always looking ahead to see what I should be doing, always smiling, and always willing to help others.” Examples of this include planning to help with food drives, fundraisers, or other means of assisting. I love to help, not for credit or praise, but because I know I’d like the help if I needed it and because it’s the neighborly thing to do; it makes my heart feel warm and happy.
In the role of friendship, I do almost anything for my friends. Most of my friends have said they know that I am always there for them when they have a problem and I always support them. One friend in high school, Tamika Thomas, said I was a good friend and supporter because in high school, I happily supported her when she ran for vice president of our class, by taking time out of my day to make signs and basically campaign for her.


The role I play in family is very important. My family has said I’m very loving and involved in family activities. When the family gets together, I always try to help out, whether it be with cooking or entertaining the kids, I’ll do it. They have also said that I have a great amount of determination; anytime I was told I couldn’t do something, I proved them wrong. A perfect example of my determination is: when I was an infant, my arms were pretty weak and my mom thought I couldn’t hold my bottle; instead of using my arms, I used my feet to hold up the bottle.


Some people have said two other roles, I play are natural born leader and special needs advocate, because of my “strong character, determination and dedication to personal and community causes that better our society, the confidence and tenacity to make a stand on behalf of those who cannot represent themselves, and looking past disorders and disabilities and loving people for who they are.” A perfect example of this caring and devotion to charity and special needs children is when I go spend time with a little girl with spinal muscular atrophy named Julia Ortego. Julia always smiles when I go visit and says, “I am her best friend and her big sister.” which makes me smile, knowing that I’m making her life as happy as it can be, despite her disability and limited life prognosis.

Another example of this dedication toward special needs and community causes is when I work at the summer day camp for special needs children; even though due to my disabilities, I didn’t get paid to work and had to volunteer, due to my limitations of my disability and the parks and rec people worried about liability; I still work there because I was a camper there once and I felt it’s time I give back to the new generation of campers now attending, plus who better to help the abled-bodied campers “get into the mindset of the campers,” than a former camper?


These roles I play are very important and I take them seriously. The roles I play “send light to people in darkness,” while for me, it’s just what I love to do. I love to help and make everyone happy as best I can. If I see someone depressed or sad, it makes my heart sad. My roles are what paint my world and make me who I am, a small girl in a big world trying to make a difference.


Now in 2023, I want to speak to anyone reading this:

“Life is hard sometimes, it isn’t always sunshine and rainbows, puppies, cupcakes, and unicorns; It does get hard. There are times where you feel discouraged, sad, hopeless, guilt, like you don’t matter or that you have no reason to live, I am here to tell you to not listen to those feelings. While it is okay to acknowledge these feelings and know they exist, know that they are lies; not necessarily the feelings of sadness or anger or hurt or any of that, the lies are the feelings of you have no reason to live, no purpose, that you don’t matter. Those are the lies.

I am here to tell you that as someone who suffered with disabilities as well as bullying because of those disabilities, I know those feelings. I know what it is like to think I won’t have much of a life because of the pain, “How can I hold down a job and contribute to society if I have to live on pain meds just to not want to rip out my spinal column?” “No one is going to want to hire someone who has to take so many sick days,”

or let’s take a trip down the road of Marriage or being a parent: “I know if I get married, I lose my SSI benefits, my fiancé shouldn’t have to support me completely and then private insurance is so expensive and Cost of living keeps going up, maybe I should just end our engagement and save the stress, no..we both love each other. Maybe we just not get married.”

or parenting: “I want to be a parent, but my any biological kids would get my disabilities as they can be hereditary, I don’t want to put that cross on them too.”, “even if I adopt, they still might be disabled because that’s a lot of who are in the system when I look,” “even if they aren’t disabled, they’d get made fun of because their mom is a “freak”, “I could always home-school, but then they wouldn’t get the socialization aspect.”

There will always be worry and fear of the unknown, and the more we worry, the more we humans spiral down that dark hole of despair. I have come to realize that the best thing to do when feeling that way is to go do something to let those emotions out healthily whether it be a hobby you enjoy, going watch a movie or listening to music, journaling, going to therapy, faith, do something to get out of your head and remember to count your blessings: People who care about you, the good days, etc.

But always remember, Everyone has something they can contribute to society, you just have to dig deep down sometimes to find it, but it is there! Never give up!

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New youtube video- Disabilities tag

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Planning a Q and A video…with mom….Need questions!

I am planning on doing a Q and A type video with mom for my youtube channel sometime this week. Is there anything yall would like to know?

Any questions about raising a child with disabilities?

Any questions about what I was like as a child?

Any questions about me in general?

Her thoughts/ feelings/opinions about raising a child with disabilities?

Her thoughts/feelings/opinions about society now a days? 

Anything…There are no Dumb questions.

Music, Music Therapy, MusicTherapy, Uncategorized

Youtube: Music and fun

 I have always loved music. I may not have a great singing voice or ability to dance good, but play a good song and get me with just family/friends (if people I dont know are around, I WILL NOT PUT MYSELF OUT THERE), I love to have fun. It gets me out of that “poor pitiful me, I hurt all the time,” Mood. 🙂 

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Disability update- Scoliosis Update: St Louis check up appointment

 On September 22, 2020, I had my appointment with Dr. M Kelly at CAM Center in St Louis, Missouri. He didn’t seem too worried about the broken rod at this time. the rod is broke but it’s still got some support from other rods and such, we not doing anything at this time (if rod gets worse or something, then we’ll see our options. Not really wanting to go back in at this time because the wound I had previously s finally behaved and “quiet.” So he’s like “let the sleeping dog lie,” to which I translated “don’t poke the bear” and he agreed.The “rod pain.” Is not rod bc the broken rod is on other side of my back, but it’s probably “muscles” or nerve pain instead. Which thinking back after my surgery in 2012 I did have similar pain but this round feels worse than last time. Idk. Maybe my fall made it worse..idk. 🤷‍♀️🤷‍♀️🤷‍♀️ anyway that’s the update.

other than that it was a great visit. I spent over a week (September 20- September 29) at a friend’s house; her family tried to convince us to move out there. LOL.

In other news, even though the infection has cleared up in my back, they still want me on infection meds. Also in other news, the rib pain that used to plague me before I had that wound issue start (after 2012 until the wound started,) is back. UGH. wish that would’ve stayed away.

Still no word from the geneticist about an appointment for my EDS- UGH!

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disability journey: Broken rods – facing my parents and such…

 As we are aware, I had re-broke my spinal fusion rods and was dreading facing my parents about it. This weekend, my parents came in off the truck. As soon as they saw me, Dad asked “what happened to your forehead” because that was the first thing he noticed. “Well, you see, there was a incident in the backyard on the steps. I fell…and re-broke my rods.” They didn’t look happy, but didn’t say anything, later they mellowed out and we joked about it. Then I gave them some candy bars I had bought at the store on Thursday after the incident, before they came in, with the joke to David, “I’ll get their favorite candy bars so when I deliver the bad news about my rods, it will be less of a blow…Like…’look, I got yall favorite candy, oh by the way, my rods are re-broke. Oh just eat your candy bars before you reply.” hahaha. To which I recounted that story to them and they laughed. I am so lucky to have understanding and supportive parents with good senses of humor. 🙂 #Blessed. 

I also sent the Xrays to Dr. Kelly on friday through “snail mail” with post office saying it should be delivered/recieved on monday. So I will call monday to tell his office and hopefully by tuesday or wed, I will have some news on what Dr. Kelly had to say. I also hope I hear from the genetics doctor soon as well. 

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Disability Journey: Broken rods again..What does it mean?

As we know, my rods are broken once again, but until Dr. Kelly receives my Xrays from OGH and I hear back from him and go to my appointment in Septemeber, we do not know what will happen. Will I have another surgery? More than likely- I mean my rods can’t stay broken. What does that mean?  Well, more than likely it means another surgery, recovery all over again, push back college again, postpone the wedding again, having to raise money or apply for hardship case again since St Louis Barnes Jewish doesn’t take out of state Medicaid, and the talks of David and I starting a Food truck business will also be put on the backburner. 

I am tired of the rods breaking; this is the 2nd time! Maybe I should just put myself in a plastic bubble or “ground myself” permanently into a wheelchair and say “Fuck walking” – maybe I won’t injure myself, since I can’t seem to not be a klutz. I don’t know what the answer is. 

I am just dreading it. Dreading facing my parents about it, dreading facing doctor kelly about it, I know accidents happen, but I feel like I am a disappointment and let everyone down even though I did everything right this time: I didn’t get on inflatables again (I learned my lesson from last time), I was cautious when picking up on my niece or stuff, I was cautious and didn’t bend- instead I squatted or got on my hands and knees,) and yet, I still broke my rods. I wonder if my Ehlers Danlos has something to do with it? Hmm. Guess that’s a question for when I do see that EDS genetics doctor. 

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Disability/Scoliosis/EDS Journey: Ended up in ER

 8/12/2020

So earlier today, I had my appointment with my GP who agreed to refer me to an EDS geneticist that I had found in New Orleans- Great news, right? Right. 

later that evening, I was outside helping my fiance’ do some yard work around the backyard and he asked me to go get him some bottled water; should be a simple task, right? Wrong. It ended in me having to go to the ER. 

I went into the house, got the bottle waters(1 for him, 1 for me), and started back out the backdoor: Now our backyard door has a drop about 1-2 ft and then the first step. I don’t know if I missed the step or if my ankles/legs decided to give out; it all happened so fast- All I know is next thing I know, I am losing my balance and falling forward and landing face-first onto the concrete sidewalk. 

Landing forward, should spare my rods right? Hmm. well, I’ll get to that…

When I fell, I hit my legs and knees and felt like I couldn’t stand right away, I busted my head on the concrete and had a big gash and later a knot, scraped up my right wrist, and had landed on my left ring finger that had started to already swell. 

I waited for a little while to see if the headache would subside and I’d feel better. No luck. So we went to the ER. They did a CT Scan (to look at my head to make sure no damage) and a Xray(to look at my rods and back). 

The Drs said the finger wasn’t broken; it was a busted blood vessel and ice and rest should bring down the swelling. The CT revealed no signs of any damage or concussions. However, the Xrays were not as lucky: My rods that I just had fixed almost a year ago, from being broken previously, were broke once again! Now the rods could’ve been broken before this incident- After all, I was still taking pain medication on and off as needed and I had an experience months ago while still in the apartment where i had stood up and it felt like a popping shockwave down my back. The timing just really sucks, so now I have to call Dr. Kelly and tell him the bad news about my rods. I feel like I let everyone down again, but I did everything I was supposed to- I wasn’t straining, I wasn’t bending, I was being cautious,, I didn’t get on inflatables this time and I still end up with broken rods. I wonder if my EDS could be a contributing factor to the rods continually breaking? I suggested it to one of my fellow Scoliosis friends who is in a scoliosis group and said there was a girl who kept breaking her rods and getting infections and was later diagnosed as EDS and ended up having her rods removed, so it could be a contributing factor. Hmmm….I don’t know. Seems like I try to do everything right and then something still f** it up and I am back to being a disappointment. UGh. I hate these voices in my head and feeling like I am mentally unstable. Will things ever get easier? 

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disability Journey: Thought of the day- Medications and side effects…

 thought of the day…8/10/2020

like for real why do medications cause side effects? Like pain meds help with pain but in the same token, you might end up adding in depression, anxiety, mood swings, agitation,etc. (to which I already have some.)

so it’s like okay..do I wanna deal with pain and possibly just cry to the point of wanting suicide…or do I take the pain medication and stop the pain, but end up depressed or miserable and still wanting suicide for a different reason other than pain- because of emotional impulses and acting like a toddler throwing a tantrum? hmmm.

oh and then lets not forget when I am on pain meds but not sleeping, I tend to “go down the rabbit hole” and spiral emotionally- like right now, I am convinced I have Borderline Personality Disorder.

guess the saying is true, “Idle time is the devil’s playground.”

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youtube video: Cover “Unbreakable”-Ali Mcmanus

In the video, I was in the car jamming to my new “theme song” Unbreakable by my good friend, Ali Mcmanus. -video July 17.