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 | 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

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?

A-Z Disability Challenge | T : Titanium

I think one of the most popular subjects I tend to talk about, whether it’s online or out in public, is my Scoliosis and time I spent in the hospital to receive my rods in my back to help fix that problem. Honestly, I would like to stop doing it, because I really do speak up about it a lot! So, I’m hoping that this post will mark the end of it for a while.


I was a newly eleventh year old when I finally had my third and last surgery at Shriner’s Hospital for Children in St. Louis, MO. The surgery actually took place at the Children’s Hospital since it was a major operation. My family and I were already familiar with it, because I had my second surgery there too! I’ve never been too sure about how long I was under but I want to say about eight hours. I’m sure some of my family members will comment below the correct time range if I’m wrong.

I spent about three weeks recovering from the “right side” surgery, which surprised the crap out of my doctor, so they made a schedule to get the final surgery done within a week later. It wasn’t that long of a gap between these two, but neither was the timeline to go home either. I feel like I was there for another week and a half because we came home just before Thanksgiving. For the operation itself, it consisted of stretching out my body, inserting the crushed rib they took out during the previous surgery, placing it into small spaces where the cartilage in the spine is suppose to be, afterwards putting the titanium rods in place; plus the metal pins at my hips. The last thing they did besides sew me back up was unscrew the metal halo I had attached to my skull for almost four months. Yes, we asked if we could keep it, but were told various stories about why that wouldn’t be a good idea. .

Now after 17 years, it is still pretty weird to see these really bright objects pop up on recent X-Rays. Even though I’ve only had one done that wasn’t for a check-up at Shriner’s, was even more surreal because for the whole of my childhood that’s where I went to get a look at the inside of my body, besides the time I got an MRI at Children’s Hospital, just before I was to have the second surgery! Other than that, I really forget that I have them. I mean, don’t get me wrong, I can definitely sense when the weather is changing drastically because of my rods and I’m certainly not a fan of going through a metal scanner and hearing it go off like crazy and it’s not all because of the wheelchair!

As time rolls by, the less sensitive my back has become to being touched. I use to try to move away from my mom’s hands whenever she gives me a shower, because it was so painful internally, but I’m happy to say I love being scrubbed down because it acts like a mini back rub too! Of course, I still have days where I do not like to be touched back there and it’s usually because of something that I’ve done, like slept in a different way or popped it, and yes, I try not to do that on a daily basis!

Here’s an interesting question for you, do you have any titanium plates or rods in your body? Also, do you get sick and tired of talking about how you got it like me?

A-Z Disability Challenge | S : Sexaulity

WARNING: This mentions mature sexual content. If you are not comfortable in reading about this, I highly suggest you click the “x” button on the top right. This is an educational but personal post that I will NOT apologize for, it is very important for others with disabilities. Please respect what I have to say, and enjoy. Thank you!

Oh boy!

I think talking about disability and sex are very taboo topics. I should know considering it took my mom and I a fairly long time to even start having discussions about it. When it came to my sister, I feel like it wasn’t that bad and yes, I was there for the majority of that talk. For me though, I knew what sex was (I always have), but there were things that I couldn’t get my head around. Ha ha! Blondie was roughly 15 or 16 years old when she received the talk whereas I was 19 or 21! I feel like at that those ages, you should be somewhat of a pro when it comes to knowing things and of course having sex!

One of things that Arthrogryposis has basically taken away from me, is my ability to pleasure myself. I can’t mastrubate like other women. I have asked questions about this to a group of women who also have my condition and they’ve been helping me figure out alternatives. I also don’t think I’ve had a proper orgasm, but as I have been told, it takes a lot to get that far apparently! If you have a disability and worry about your lack of sexual experience, you know what I’m talking about, because you feel like you’re missing out on something that everyone is doing. You just feel lost in your own body and you don’t really know how to resolve this issue as a whole.

Honestly, I am afraid of having sex. As much as it excites me, because let’s be real here I watch porn and read erotica novels, and I response in the right ways, it’s the physicality that terrifies me I guess! I mean, I can barely get through a couple of seconds when I have to put vaginal cream inside my vagina, because you have to use a syringe and it makes me feel really uncomfortable – half it is because a parent has to do, mostly it’s my mom! This might be the other reason why I am semi okay with never been on a date! I’ve never had to really think about what happens afterwards; once I cross that line, how am I going to feel? I know it’ll hurt, but how much?

Last week, I watched Nikki Glaser’s Netflix comedy special Bangin‘ and oh my gosh, it was freaking hilarious! I am usually not a fan of sexual humor but the whole thing was funny! It was also shocking that she was talking about things that I have been thinking about for years! She starts off discussing blow jobs and I’ll tell you, I will NOT do that for as long as I live! What is funny though is that, it was the first sexual thing I ever knew about even before realizing it was a real thing! I still have no idea how I figured it out too. That’s still a mystery to us!

This has probably been the most freeing post out of all the other letter challenges! The reason why I felt like I needed to write about it, is because I know I am not the only one who feel like this! I think it takes a lot of guts to speak up about your sex life, and I just wanted to break out a little more because I am usually very reserved in my posts but I thought it was time to loosen up a bit.

How old were you when you received the sex talk with your parents? Now what about you had sex for the first time? Have you felt like you’ve been left out of the party of what everybody in your age group is doing in their lives?