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?

A-Z Disability Challenge | R : The “R” Word

When it comes to society, words can be popular among the different generations. In the 1960-70’s, the thing was “groovy” at least, I think it was! I’m basing this off what I saw on Scooby-Doo! Currently the word that everybody uses is “bougie” which I still haven’t learned how to use or figured out what it even means! This isn’t the first time this has happened so don’t feel so bad for me.

Usually the “in” words are innocent like this, but some are not. What everybody doesn’t understand is that there is a medical term that is running around causing havoc among the disability community. Something tells me that may already know what it is, but for those who don’t, it the “r” word. Retard in all forms.

It is sad reality when a word like this has the power to degrade so many people at one time without anyone’s knowledge. This is one of the issues of today’s society is that it’s become so popular that these young kids probably don’t even know what it actually means, much less care about it anyways! The adults are even worse, because sometimes it’s like a cuss word they say on a daily basis and can’t stop themselves from saying it. However, these reasons are even good excuses for anyone that has some sort of disability.

I wasn’t too familiar of the meaning or the history of it when I first started to notice it around. I’m not for sure how I found out about it, that memory has been stripped away, but I remember the impact was big, because I am a huge advocate to erase it from the public.

For a time, both my mom and sister said the word a lot. My mom is a nurse, so it was used to describe a few of her patients, whereas my sister was a teenager and it would just fly out of her mouth left and right. The fact that I was able to be enough inspiration (there’s another word I hate!) to get them to stop using it for good. My sister has even been telling other people around the two of us to not say it either and sometimes we get good response, so that’s a positive sign!

Unfortunately, I don’t think it’ll ever go away completely. It’ll still show up on films and the medical world will probably still continue to use it, but hopefully with this post maybe you’ll understand that even though something is in that you have to follow suit. You don’t. There are tons of others that can take its place. You can be popular in another crowd, and even respect people like me with not speaking about it again. Do you think you can do this?

A-Z Disability Challenge | Q&A

Howdy!

This post wasn’t really prepared the best. When I officially decided this was what I was going to do, I was overcome with dread because whenever I ask for questions like this, I don’t get anything on anything! This was the case for both Twitter and Instagram (which I figured!) but surprisingly on Facebook I got several interesting ones! They were only from two people but at least they gave me something for this post!

Questions Asked By Brittany:

How many people have you ran over with your wheelchair?

Since I’ve had three of them at different times in my life, I figured it was only right to do an estimate for all of them! Unfortunately, I actually haven’t used my red one a lot, so for once it’s at zero! I feel like once we have a porch and I can freely go places with it, that number will increase but hopefully not as much as the previous chairs because that is just embarrassing!

I was around four years old when I received my first wheelchair, “the purple one” as my family calls it. I used it for the majority of my childhood, until the age of 14 I think. So, I feel like the number is pretty big because I was a sassy little thing and loved to run people over. I’m thinking it might be over 30-40 people. The second was the ugly hot pink chair, which I had from the age 14 to 27, I don’t feel like I ran over a ton more but I feel like it’s no more than 30 people, because once I was out of school, I didn’t like doing it anymore.

How many times have you fallen out of your wheelchair?

Thankfully I have never fallen out of my power chairs before, but with these manual wheelchairs, it’s a totally different story! The chair with the most falls is one I like to call “death trap” because of the amount of times it’s not only scared me, but others who have had watch me fall out of it. Since last February I don’t use it as much unless I am getting my hair washed. Unfortunately, my dad and I can’t throw it into the dumpster yet!

Oh, and I have fallen out of it four or five times! The last few were semi-controlled, as my mom was in the process of transferring me but the brakes never locked so it would roll back a little if you weren’t careful!

Your favorite memory?

This is so difficult to answer because I have a lot of favorite memories, but the two that jumped out at me won out. The first one was of my sister and I being outside at our grandparent’s house when we were little and one of our favorite things to do at the time was dig in the dirt by the porch. For some reason our spot was always by the big tree and one day while we were digging for treasure that came with killing invaders by the technical names of ants and worms, we found this white thing. We seriously thought it was treasure until my nana pointed out that was part of the water sewer pipe to the house. After the discovery we were told to cover it back up and pick another spot. Unfortunately, we were never as lucky in other places as that one!

The next memory is a special one because in my family, we are mostly known for our eating and laughter, but one time while my Aunt Laurie and cousins Amy and Taylor came down from up north, we managed to get everyone involved with playing Frisbee. This had never happened before, but everybody but nana and I went out into the big part of the yard to toss the Frisbee back and forth to each other. It was so much fun to watch everyone risk life and limb basically to never letting it hit the ground! The only reason we stopped was because somebody got a little overzealous and threw it up a little high and it landed on top of the house!

What did you eat for breakfast? 

This was one of the most random question but I can’t leave it out, so I had a bowl of Cocoa Pebbles with a small amount of milk on top, along with a cup of milk with it too.

Questions Asked By Christine

Is there at least one or two inventions you wish you could have that made your life easier?

You know, I am always thinking of things of little inventions–it’s part of being half of my dad because he use to fix houses years ago, but I mostly try to come up with things that I can use around the house.

For example, I have this foam box that my nana got with her Meals On Wheels once a week a few years ago, and we kept two of them after realizing they were the perfect height and light enough to move around for me while in the wheelchair or on the bed. Ever since I have had thoughts about how to make this better, with using something I remember seeing in school, but I have always had hard time explaining the visions in my head so that’s why the majority of the stuff that I think about, stays in the back of my head!

Do you have the high and low of your experience(s) and how do you handle it?

I think everyone has experienced the highs and lows of things, especially ones you have no control over. You usually feel like everything is working against you, but I have learned that everything happens for a reason and God will guide you away or to things that may not make sense at the time but later will be a learning curve for you.

For the past two years, I have been using the “going with the flow” method and it has helped me out a lot with things like overthinking and the feeling of rejection. I think the best thing to remember when things don’t work out, it doesn’t mean that opportunity will never come knocking again. You just may not be ready for it right now. I have always said that I would never write for magazines but I have, because I found several places that talk about subjects that are close to me and that made me change my mind about doing it in the first place!

I hope you have enjoyed the post today and material given by both Brittany and Christine, and I want to say thank you to both of them for sending me really fun and interesting questions. If you have any more for me, leave a comment down below and I will try my best to get back to you soon!

A-Z Disability Challenge | P : The Perks of Being Disabled

Hello!

When I came up with this topic, I really wanted to get through all of the misconceptions of what it is to be a disabled person, and attempt to explain that this life is not as fun as it can be portrayed on TV or even online for some people.

Are there any perks at all?

This question is sort of tough to answer because I think it differs between the ages and how extreme one’s disabilities are compared to the average person.

As a child, I really relished on the special attention of others. When I was in the second grade, I was what you call the “teacher’s pet” because of the favoritism that was on display by my teacher and I. At the time, I wasn’t going to basically ‘fight back’ because I was eating it up so much that I remember when our teacher was taking everybody on a restroom break, she picked me up and carried me so I could hang out with everyone in the hallway. The look on everybody’s faces told me that they were a bit jealous of this affection, although nobody ever said anything to my face.

Now that we have this part out of the way, I feel like I need to say that having an aide (or personal assistant as I’ve heard some bloggers say in the past) isn’t the funnest thing in the world. I’ve loved the people that have taken care of me throughout my time in school, I still keep in touch with a few of them, but I’ve only really appreciated what they did after I had graduated. Of course, there were some issues in the past, but the one that plays out the most was after Christmas break when I was in the sixth grade, I suddenly had a new one. I only had 2 replacements and they were each a surprise. Once all of my friends realized my previous aide was gone, a lot of them were more upset at the fact that they weren’t going to be with me anymore.

My nana and I talked about this a few years later about why this happened. She’s the one who made the statement that maybe it wasn’t the outcome they were angry about, rather than they saw her as a friend. Out of all of the people that took care of me. I had one woman who was in her late 20’s. So, everything that my nana was making a lot of sense because she allowed them to get away with a lot of stuff because she might’ve wanted to be accepted among the rest of the class too, the majority of the other aides I was around would say something either to them or the teacher. I would always feel extremely guilty because if it wasn’t for my disability, they wouldn’t be in the room and could get away with the things they were doing behind our teacher’s back.

Having an aide looks fun at first, but after a while, some things get old. I’m not saying the people that I was with for eight hours, five days a week were elderly, I’m just saying as I continued to get older, I was looking for more independence but protection at the same time. and when you feel like you’re not getting as much as what you feel like you should be, plays with you a little. The one thing that made it worse was when you feel powerless in your situation because I viewed myself as a ‘normal’ person, never someone with a disability, despite driving a wheelchair around in the halls at top speed! I craved to have some space between the two that I feel like I could never achieve unfortunately.

Now that I’ve been out of school for close to 10 years, I have grown to love my body as a disabled woman. I think being away from my friends and of course crushes was a great thing for me because I wasn’t putting myself through all of that pressure to being someone I’m not. Personally, I don’t have any perks of being disabled; I struggle to do things, yes, but I don’t see the things I do as a perk nor having to ask for help for small things, I would rather learn how to do them by myself. So, my way of thinking has changed drastically over the years but I think this process has been a successful one!

If you have a disability of any kind, how do you feel about the perks? do you agree or disagree with what I had to say above? When did you realize your views on the matter changed?

A-Z Disability Challenge | O : Saying “Yes” To Different Opportunities

I think everybody looks for opportunities to do things, whether it’s on their bucket list or just a little something they’ve had on the back burner. We all have our reasons and excuses for never getting it done before, but I don’t think there’s not a person that jumps at each opportunity than somebody with a disability.

If we see an opening to something, we will likely take it to see if it’ll work out or not. I should know, because everytime something like this happens, I will take it. I’m not the one that has the problem, it’s usually other family members that are more afraid of the ending result–they have no faith in me!–but afterwards they figure out they had nothing to worry about in the first place!

I am for the most part, pretty brave with taking on new or in this case old challenges. I would like to get back to transferring to my bed to the toilet, and finally the wheelchair to the bed. When I was younger, we spent a good two years trying to make this a reality so that as everybody got older, there would be very little lifting involved to do the simplest things. We already do something similar whenever I get a shower, but these two are our next hurdles to accomplish.

I don’t know about you out there, but when I see an opportunity to do something when the other person leaves the room, I usually take it! There have been many times that my mom has came into my room from grabbing some clothes from the laundry room and I am like in between the edge of the commode and my mattress. And to make feel even more uneasy, at this point of time I am usually thinking if I should just take a leap of faith or ask for help. Nine times out of 10, I just jump over to the other side! If I can keep my smile to myself, I can do this without hurting myself in the end.

I know whenever I do this, my mom is proud but of course she is also absolutely afraid that I am going to hurt myself even worse than hitting my feet on the metal parts of the commode. I have told her in the past that if I get hurt than it’s my own fault, so at least I’m taking responsibility for my actions! Now when it comes to my dad, there is no way he would agree to anything of this. I have brought it up that I could scoot over to the other side since it was so close together, but after a couple of seconds he told me no. However, he has been getting some great ideas lately! Once he remembered that the armrests of my manual chair can be removed and the fact that wheelchair lines up perfectly to the bed, I can safely scoot onto it. The first time we did this gave me flashbacks to the time my mom and to do it, but we figure to put on the brakes and my butt went sliding through the end of the seat. So, to say this was the one time where I was terrified was an understatement! We did great though so that is all that happens!

How are you with taking any opportunity that comes your way? Are you more timid about doing things or is it your family that keeps you from taking chances?

A-Z Disability Challenge | N : What I Want To Bring To Nolan’s Life

Before my nephew came along, I was very specific on how I wanted to be represented towards a young child. I had some help creating these thoughts after my neighbor’s three year old daughter started to act like she needed to help me out, although everybody (including myself) thought it was a sweet gesture, it really became clear that this little person looked at me and she shoul help in anyway she coul, even if that meant by holding my cup close enough to face to take a drink.

I understand that she was only doing it to be nice, but she really was doing it for two reasons. One, she getting praise for doing something so benignant and the second is she saw everyone else around her help me out from time to time. I always felt like asking for help was a weakness, so to see this sweet little girl automatically do this, really messed with me for a long time. Although I think it is important for young children to understand all of the disabilities in the world, I also believe there is a way we can teach them about respecting the boundary.

Nolan isn’t at that age where he was can physically lift and carry my drink around to allow me a sip now and again, but he does understand that Aunt Meghan is very different from everybody else.

He loves cars and trucks like every boy does, and whenever he comes over it is one of our favorite things to play with because it is just small enough to put in between his hands and my toes and I can pass it back to him if he wanted to use it. All I have to do is ask for it back and he will either give it to me or exchange another toy for it instead. He’s a stinker like that! He is getting familiar with putting things in my toes rather than my hands; he actually never puts anything in that area which has really surprised me but he was a quick learner as a baby that he understood fast I had certain things “wrong” with me.

Since he was about 10 months old I think, he started to become obsessed with shoes. At first, it was purely just my sister’s flip flops and sandals that he would attempt to put on, but recently he has tried to stick his feet into her sneakers. There is nothing more cuter when a small child tries to put his foot inside the opposite shoe! I mean, this kid’s a genius, he knows how to grab his foot and move it inside of the shoe without really wearing them a whole lot in his short life. I mean, the first time he ever wore shoes out in public I think was on Easter!

The most recent thing to happen was the day when I decided to put on one of Blondie’s shoes, to see what he would think to see me in them. As soon as I got it on and showed off my incredible feat, he outdid me. He grabbed the other one and put it on his hand! This made me realize on how much he pays attention, but the fact that he sees my feet as my hands! I did not expect that reaction but I was very humbled by it at the same time.

I think about the future a lot, and what’ll mean for him if, God forbid, something was to happen to my sister and she wasn’t able to take care of me anymore, the responsibility would turn to him. There is one thing that I will never allow to happen.and this is it, I will firmly stand my ground and tell him that it is more important for him to focus on himself. If I can get this through his mommy’s head I would, but she is far too headstrong for this conversation apparently. Again, I understand the reason behind this but she has been a protector and a great person to take care of me in my time of need but between the two of them, I don’t want them to think they need to continue on that road, you know? There are great places and nurses that can fulfill that promise just as much as they can. I never want to become a burden to anyone, let alone my sister, brother-in-law or Nolan.

What do you think about this? Am I being too harsh about this future situation or is it something you can secretly agree on?

A-Z Disability Challenge | M : Do You Think You Take Too Much Medication?

This is an interesting post for me because I am very self-cautious about any kind of medication, whether it’s for depression or general pain, I am always afraid that I will become dependent of it. My mom tells me all the time that I am not, but that doesn’t necessarily help my paranoia. If I could get by with taking only Advil I would probably be the happiest, but unfortunately that doesn’t help with the muscle spasms or the really intense pain that it can cause in certain places. So, I am stuck in this mental battle of knowing I am fine with my intake but my brain doesn’t allow me to believe so.

My brilliant papaw was a Pharmacist, he went to school for it and afterwards went into the Korean war, but instead of seeing any action, he was sent to Hawaii to work with the doctors on hand. We were told lots of stories about his time there like how the fresh pineapple tastes better than it does at the store and every once in a while he would tick nana off with bragging on how he had a girlfriend there. Honestly we never really trusted him with that piece of information.

My papaw was one of the smartest people I knew, but he unfortunately had issues with pain, and one of the saddest things about this was the amount of pills and empty bottles he would have stashed around the house because he went back and forth thinking that he wouldn’t have enough or people would steal them. You really feel sorry when an older man feels the need to secretly hide medicine for either reason, because if they are anything like my papaw that after discovering three to four bottles of a random amount of pills in each one, having to be monitored by not only their wife but also their daughter who is a nurse, is very heartbreaking! I know that he absolutely hated that, but he had the last laugh because after he passed away, we continued to find bottles up until the house was sold!

There has been a lot of news about doctors and manufacturers being sued for all of the opioid addicts out there, and I am not sorry for this but instead of putting the blame on the doctors, how about you put it on the addicts. It was their choice to use it to not only harm themselves but cause many issues for patients that do not abuse their medication. My dad is one of those people, he has been on a different set of medicine recently for reasons unknown by his doctor and since then he’s actually been in more pain than I think he’s ever been in his life. He has other ailments that are causing him more trouble as he gets older and it sucks to see such a person want to be in bed or on the couch with various amounts of pillows than outside doing stuff. This mess that has finally come to life has really horrible effects for both sides.

Before I end this post, I would like to say that these are my opinions. If you are an addict or have a family member/best friend that has dealt with addictions over the years, I am sorry for you, but I truly believe that most of the general blame is on the wrong people. Let’s make this clear though, there are crooked physicians out there but some of them are desperately trying to help their patients and if they know them well enough that they understand that they’d never want to jeopardize their medication for a temporary high.

So, have you ever felt like you take too much medicine just to get through? It doesn’t matter if it’s mild or intense amount of pain either. What are your thoughts of the opioid epidemic?