A-Z Disability Challenge | Z : Zoom

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I know I’m late on getting this post up, but I have been feeling really lazy in the past few days.

I have always been called “speed demon” because I have my power wheelchair’s speed on high. It’s crazy how much my mom thought the volume was down low while I was in school! Speaking of that, my middle and high schools were attached and had multiple ramps in the hallways. The first time I ever visited, I was probably going into fourth grade and my face lit up. I couldn’t help but race up and down those halls with Blondie and our cousins. Now as an adult, I feel like I have definitely calmed down, and to just seal the deal, the occasional popping a wheelie doesn’t even do it for me anymore. For my parents, this is a blessing and this could be a good sign for other families out there who are dealing with little speed demons at home too, but I feel like I should say that if I was in my power wheelchair for 8 hours straight and there were ramps all around, I would totally go for it in a heartbeat!

Since creating my Instagram account a few months ago, I have been speaking to other people with Arthrogryposis, and it has been really nice to discuss our stories and everything, I also love when parents will follow me too. I get a chance to watch the younger generations grow up and learn how to deal with it in an entirely different era.

There is one little girl that takes me back to starting school for the first time, making what I thought would be long-lasting friendships, and receiving my first wheelchair. The girl’s mother told me once that thanks to her brothers encouragement, she tracked mud all over their house. I could tell she wasn’t thrilled about the incident. There is a big difference between the mini daredevil and I. When I was in elementary school, we left my power chair there and only took it home during summer vacations because our house wasn’t handicapped accessible. So, I never really got to do things like this when I was younger, but this was also at a time where I could scoot everywhere so I didn’t need it too much.

When we did go places that required something more substantial, we used a toddler stroller. It was lightweight so it wasn’t that big of a hassle to put together and take me on trips. I want to say that we used them from the age of seven to probably 11 years old. After I had my surgeries, my body decided that it not only wanted to grow but everywhere! Honestly, for the last five years of being in the stroller, I never wore the seatbelt. I couldn’t. It never wanted to fit around my belly.  Thankfully, by the time I started going to middle school, I was riding the bus to the school and home, so we could keep my wheelchair with me at all times but more importantly, this also meant we could finally get rid of our trustee stroller of the early 2000’s.

Once you got your first power wheelchair, were you described a “speed demon” growing up? Do you remember the first time you discovered rolling down into ramps and/or mud? 

snowflake

 

A-Z Disability Challenge | Y : Let’s Talk About You

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Since we are at the end of this challenge, I wanted to do something fun. I kept going back and forth on what I wanted to do. I originally had titled it, “It’s YOUR life” but I felt like I have been talking about this a lot, so I changed it to discuss you.

I’m also doing this in a totally different way than my previous posts too. Since I’ve already done a Q&A several weeks ago, I thought it would be fun to get to know you and your way of life, so I am opening this up to you now with ten questions.

1.) What is your disability? Do you have more than one?

2.) What are some ways you’ve learned to adapt with it?

3.) I came across this question last week, and thought it would be cool to include it here. Do you think you’re a warrior?

4.) How do you feel about the word “inspiration”? What is your response to when someone calls you that?

5.) Have you ever thought about how we can change people’s perspective on what a disabled person should be in every sense of the word?

6.) What is your dream for the future? Example: goals for 2020.

7.) Does having sex with your husband/girlfriend/partner made accept or hate your disability even more? *If too personal, just skip it!

8.) What do you hope to accomplish in your lifetime?

9.) Do you follow any other disabled influencers? Such as Alex Darcy of Wheelchair Rapunzel or Jessica Kellgren-Fozard on YouTube?

10.) If you kept up with my A-Z Disability Challenge the whole year, did you enjoy the content? Did I miss anything you think was important?

It is crazy to think that not only do we start a whole new year next week, but I will also complete this challenge too. After what happened at the beginning of the year, I really did not think I could finish it. I was perfectly fine with letting it go until after new years day. I don’t really know what inspired me to get up one day and look into my daily planner and count some how days and letters I had left to find out they matched, and then get back on it every Monday. I guess I was determined to do it.

snowflake

A-Z Disability Challenge | X : X Marks The Spot

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This week’s installment will be kind of funny as I know a lot of disabled people deal with this on a daily basis. Luckily for me, I don’t, but it does happen every once in a while. I will be discussing mysterious bruises. Oddly enough, on the day I came up with the letter theme, I actually did have a bruise on my leg that just sort of appeared out of nowhere, so it works out great!

I always find myself with a black and blue spot in the most weirdest places, like my knees or shoulders. The only explanation I can give to you about the one on my knee is that it could have happened in the middle of the night and I accidently whacked my knees together while I was turning to either side. However, I can’t say anything about the shoulder though. Am I alone with wishing I could get them on places that make better sense; going back to what I said about my knees. I know I hit the bony side of my left foot a lot whenever I am in the process of putting on my blanket! I think at night, I forget how close I am to the walls, but still when I wake up, it’s not the place on my body that is hurting the most!

The plus side of this is that I am no longer banging my head on the wall. Yes, I have been known to do that too! I literally have to keep a fleece blanket next to my line of fire so that if I do get very close to it, I have that soft barrier in between and maybe I won’t end up with a damn goose egg on my forehead. Again, this has happened in the past too.

Where do you get most of your bruises on your body? Do they start to appear at night or as the day continues? 

snowflake

Blogmas | Christmas Tree Ornaments

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Howdy!

Before I start on this, I am leaving my previous Blogmas post about my Christmas tree because if you haven’t read it yet or this is your first time on here, you can get caught up on why I have adopted a very interesting way to do my tree this year.

For today though, I am discussing my process of both the ornaments and the way I took the pictures, because that in itself was a big production that some people might find enjoyable! Fun fact: I am one of those people! 

  The Ornaments  

I feel the need to mention that the day I finished writing my previous post about my tree, my whole original theme of white lights, purple bulbs, and a star on top, kind of went out the window since my mom could not find anything to match that scheme. However, my dad did say something about going to Dollar General and getting things there. So, one morning I went on the DG website and looked over their very limited holiday decorations and found two that I actually loved, and they were: a pair of angel wings that came in two colors on the site, gold and red. I really fell in love with the red ones. The other one I just couldn’t get over was the crown. If you know me well, you know I need anything royalty and I thought for this reason would be no different!

Later that day, my mom went to the store and came home with an interesting sort of things for me. She got me a box of array silver ornaments. There are the normal shiny ones but my favorites are really the glittery and matte bulbs the most. Unfortunately, they didn’t have their hooks on them already so that was a bummer, but I managed to put two of them on the tree myself before letting mom take over! Now, you’re probably wondering about the two I found online. Did we have any luck in that department? Well, I’m happy to say, she found both of them! There was a setback though, she found the wings only in silver.

This wasn’t what freaked us out though. When I saw them online, they looked pretty smell, almost the same size of the other ones she got me. No… The wings and crown are huge! We couldn’t believe it! Honestly the crown is the perfect size but the wings just look obnoxious! This wasn’t the funny thing though, because both of my parents thought it would look great as the topper, but every time I look at it, I think it looks like a vagina! I literally thought of the episode of Everybody Loves Raymond, when Marie takes an art class and the sculpture she presents to her family, looks just like a vagina. The wings are basically in the same shape but with a bigger opening in the middle, so when my mom placed it at the top of my tree, it just looked very wrong. I mean, I’m all for my Christmas tree being non-traditional, but I have to draw the line somewhere!

I managed to talk my mom into putting the wings lower on the tree, but as much as I had my heart on a star on the top, I kind of thought the crown would look better there instead. It took some convincing on my part because my mom was very adamant about the vagina–I mean, the wings on top–but it does fit on there nicely. As far as decorations on my tree, this is about it. My mom did find me some lights too, but the cord was white and since the tree isn’t as full like others, it looked a bit chaotic but all is not lost, because my mom came up with another idea for them. I don’t even know what prompt this, but she just started wrapping them around my curtain rod on both sides and it actually looks amazing with my sunflower curtain! Thankfully, the lights don’t generate too much heat that I can actually leave them on all day and night. They make my room look really cozy!

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  The Process Of The Pictures  

Now that we have that part out of the way, I can talk to you about how I managed to take the photos for this blog post. I will say, it was not easy, but honestly any post that requires a lot of pictures is usually pretty difficult anyways! Between the fact that I am always adjusting myself to get the ‘perfect’ shot and basically trying not to pop out of my wheelchair and land butt (or worse, back) first on the hardwood floor, isn’t the best thing in the world. Thankfully, I can say I did not hurt myself too awful that day – I did sleep like a baby that night so I took that as a good sign!

For the first round of photos, I used my Kodak digital camera I got last Christmas. I thought the pictures turned out really good the last time so I tried it out for this part, but since I was working with higher angles, I was having a lot of difficulty keeping the camera steady enough. I was able to get a few of the ornaments in their places, so that was nice, but for the rest I switched to my tablet.

Now, I will say that I would only use this as a last resort, because they weren’t in the best quality. I think the culprit for this was because it was too dark in my room. I have become dependent on the flash and since I didn’t have enough lighting, they might not look the greatest but I honestly loved how they turned out for some odd reason. Besides this, I used something else to help make everything easier for me. My nana and papaw had this foot stool that they inherited from the aunts, and I use this to prop up my tablet to color and read. However, I hadn’t thought about using it as a tripod until that day. It took me a good hour and a half to arrange it in certain ways to get the shots I wanted, because when it comes to blog photography, I am incredibly picky! We were successful though, or at least I’ll found out if any of you send me comments about them after reading this post.

The last thing I would like to do, is find this large bag of classic Christmas heirlooms my nana gave me a couple of years ago. I think they would look awesome surrounding the tree. It would complete the whole thing I think. If we find them, I’ll update you about it on Instagram and Facebook!

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What was the meaning for your Christmas tree theme? Do you have any funny ornament stories you would like to share with me? For anybody with a disability, does it normally take you a while to get everything just right? What do you use to make things easier?

snowflake

A-Z Disability Challenge | W : Wheelchairs

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It is extremely difficult for me to talk about wheelchairs. Last year, the big contervesory was about the death of Stephan Hawking was announced, an artist made this beautiful drawing of him coming out of his wheelchair and basically walking up to heaven. As a disabled woman, I was very conflicted with this, but it wasn’t for the picture per se. It was because I felt like I had to choose between what I’ve always been taught and agreeing with the rest of the disability community.

The big deal wasn’t necessarily about the drawing itself, it was more about how a disabled person relies on their wheelchair to do things, like simple tasks around the house and/or getting out and having drinks with friends. However, everything just exploded into this chaotic thing that I really did not want to be part of at that time. Honestly, I still didn’t want to talk about it again on here, but I am on the letter “W” and there wasn’t anything else I could talk about other than this.

So, I’ll just say that my wheelchair doesn’t give me freedom. There it’s out and I can separate myself from the crap I’ve been feeling all this time.

I do think it allows me to do tasks better but I still feel stuck whenever I am in it. I really feel I am limited in both varieties of wheelchairs, as I’m either too short or too bulky! I have yet to find the perfect fit. Maybe this is what regular woman deal with picking out new heels! The second point I would like to get across is, it’s also all about your state of mind. I think after so long, you adapt to every different setting, and wheelchairs are a part of this too. You might get to do new or lose some beloved challenges while figuring out your surroundings.

Again, I have conflicting feelings about my freedom. I know I can never get away from my limitations. I say this not a sad note though, I like being able to test them anyways. I think this is really healthy! My family might not always agree with that statement, but you know. Honestly I would lastly like to say, I will believe what I want to. I have been doing pretty good on several other subjects throughout the years, I can add this onto the never ending list too! Even if that means keeping it in for a year and a half until I can find a clean way to discuss it on here, that’s what I’ll do.

If you’re in a wheelchair, whether that is full or part time, what are your thoughts on your freedom to be able do all the things you want to do? 

snowflake

A-Z Disability Challenge | V : Voiceless

I am dedicating this week’s post to all of the disabled people who cannot speak, both physically and mentally.

My aunt was born deaf and she has been successful at getting through life, she has had some issues over the years, like right now, one of them is that she is loosing her sight, and I can’t imagine how scary that is! She relies on a lot of things, especially her eyes to be able to do sign language with other people, including her family. So, I really hope this post doesn’t offend her or any other person who is deaf out there.

One of the biggest misconceptions about disabled people, is that we can’t speak for ourselves. It’s crazy how many stories I’ve heard from various family members of people coming up to them in stores when I was younger, and they were absolutely amazed that I could talk. Sadly this is a reality to a lot of people out there. They can’t say anything, and I’m not just talking about people who are deaf. My focus are on those who could be scared, unable because of their condition, etc There are lots of reasons for a person to become silent.

People think this only happens to elderly people, after they’ve had a heart attack or stroke. They lose the ability to do things for themselves, to the point where they have to relearn how to do things again. Sometimes, one of those things is speaking. Unfortunately, there are people, who never get the chance to go back to who they use to be and they’re stuck like this. It’s always sad to see an older person in this state, but I often think about the ones who were born without ever having anything like this happen to them, and yet they are going through the same things and it messes with me emotionally; I feel grateful that I am of sound, mind and body, but I also feel awful at the same time because I don’t really know what to do to help them.

This is when you understand why some opt for assisted-suicide, because they believe it is the best choice for them.

A-Z Disability Challenge | U : Unconditional Love + Support

One thing that is equally important to a disabled person’s life is having unconditional love and support from their family and friends. I have always had a large group of people in my corner and as blessed as I am with all of this love, I also know that there are others like me who don’t have anybody there for them.

I have been very lucky to have loving parents that believed in me, even as a baby! They are the ones that stopped the doctors at Riley’s, when I was a few months old, to operate on me to make me look ‘normal’ when there was a small chance it wouldn’t help me. They just let me figure things out on my own. Even if that meant, I used my feet for everything and was a wheelchair bound for the rest of my life. I have never given my parents much credit to this decision because it was a risk not knowing how this little girl would be able to do things for herself. Thankfully, I did learn things on my own or with some help from other family members/physical therapists.

I wasn’t aware of how other young teens or adults with various disabilities lived without this kind of love, until I was a senior in high school.

I wish the emotions I was experiencing had sunk in as I feel like it would have helped me understand loads what everyone in my family was trying to relay to me about their worries of me living on a college campus. Now I get why they were so concerned and agree that I was not ready for that kind of commitment. However, when my mom started working at a nursing home that had residents with various levels of mental disabilities, and the stories of some of them being left at the door with trash bags full of clothes and other stuff, really broke my heart!

I do understand that some people cannot handle some traits that certain people produce but you don’t give up on your family like that. A friend of mine has a daughter who is autistic. I have never met her, but have been around other children with autism in the past. So, I am familiar with their quirks and I give kudos to the parents out there dealing with a child like this, but I’ve heard of autistic kids being left behind or being killed because the families just cannot deal with them anymore. Those are always the worst to see online, but when you feel like you’re at your wits end, what is really your next step?

So, I have a questions to my fellow disabled readers out there, did you have a good support behind you growing up? Or were you basically left to be your own hero? If you said “yes” to that, how do begin to trust others that they’re not going to abandon you at the end?