I've been talking to a girl I met on Tumblr who is also in a wheelchair. Her case is a little different than mine, she just woke up and was paralyzed basically. I can't even imagine NOT knowing what was causing me to be in a chair. She said she has talked to doctors + had several tests done that aren't giving her answers. (Please pray for her + for her doctors to find answers for her) While talking to her, she brought up a point that I've wanted to touch on for a while. It's the fact that for some reasons, people assume that because I'm in a wheelchair and "disabled" (I hate that word, bleh), I'm a vegetable and I'm useless.. why people think this is beyond me. It honestly pisses me off when people act like I'm unable to do certain things for myself.
There was a time where I wasn't able to do anything for myself. I couldn't dress my lower half, I could barely sit on the edge of a bed, I couldn't control my body to do things that I wanted it to do + it was so hard for me to understand that I needed help. Now, I'm 8 months out + I am almost 100% independent (driving + living on my own are yet to come) If I would have gave up that day I wrecked + never pushed myself to get "better" + reach the highest level on in dependance for myself, I would be miserable right now. Not only am I fighting a physical set back, I'm fighting an even bigger one mentally. That's what a lot of people don't understand. I'm a pretty tough skinned person + insults don't really get to me as much anymore, but I know plenty of people who may take your "jokes" personal and lose whatever gain they've made to mentally cope with the crappy hand life has given them.
Not to mention, the pain. I hate that people say things like "Can you remember what pain is like?" I deal with pain on the daily. Some days are more extreme than others, though. Actually, I've been in some extreme pain since Thursday. I spent most of Thursday evening in my bed, trying to sleep because it hurt too much to move. I refuse to take pain killers, which may be the reason I'm in a lot of pain. However, I have seen far too many people become addicted to these + I've saw it tear apart families. I don't want that for me. Just because I can't "feel" my legs, doesn't mean I'm pain free in them. I have a constant burning sensation that is through my whole legs, which lately has been awful. I remember when it first started (about a month after my wreck), the doctors told me that pain was my friend. The burning sensation is supposed to be a good thing, meaning my nerves are waking up, which results in more feeling throughout my legs. I also have hip pain. Nobody knows what causes it, but it happens from time to time. It's odd now that pain is associated with a good thing. Random cramps come with the paralysis too. It's not just that I "can't walk" there's so much that goes into it.
Basically, all I'm saying is that I understand that not everyone who has a disability is willing to talk about it + I know it's hard to judge which people are open to talk about it, but I am obviously okay with being open about my injury. I would much rather you ask me questions then assume things. At the same time, be respectful with your questions. Asking things like "so do you have sex by rubbing chairs together?" is totally uncalled for and I'm probably going to give you smartass answer in reply.
I feel like I have said this all a million times but people still can't hear me. Seriously though, if you have questions please ask me. I'm an open book + if for some reason, I don't want to answer your question, I will tell you no.
I LOVE this. I've never understood people who have used their disability as an excuse to freeload off of people. It's never made sense to me. I have no problems asking for help when I need it. Yeah, it sucks and humiliating when I have to, but I know when I need it. But I know when someone assumes I can't do something, I become very "stick it to the man" and decide to prove them wrong. I'm not sure if that's the way I should go about it, but that is how I feel. I remember a lot when I was younger people would talk to my friends or my family about me instead of me, and it drove me INSANE! I may be short and have to use a wheelchair sometimes, but my brain works just fine. Sigh.
ReplyDeleteSorry, end rant.
Basically, I understand what you mean.
Yes! I know people who just allow others to do things for them. I was one of those people at first because I was in so much pain, I didn't want to do anything but sleep. I've changed that and now I know what my limits are. I do not have a problem asking for help if I need it, but I typically tell people not to help unless I ask. Sometimes I struggle at things, but if I know I can do it there's not point in letting someone else do it for me. Things will never get easier if that's the case. I'm kind of the same way when it comes to the "stick it to the man" thing. I want so badly just to prove everyone wrong + be like "what did you say about me not being able to do that? Well I'm doing it."
DeleteSabrina, People don't know what it's like to be you, so they will make an assumption based on someone else's broadcasted experience... like on TV or something. That must be hard to feel like everyone doesn't know or seem to care what's going on in your body.
ReplyDeleteI had no idea that you could experience pain in your legs like that. If I were you, I would at least take something for pain at night so you can sleep. But I hear those stories too about addiction, so your cautious attitude is understandable.
It's great you have found a friend to talk to that can relate to your situation, even though there are different circumstances.
Thanks for sharing! It's the best way to make people aware. If they knew what was going on, they would not say stupid stuff to you.
Thanks for reading! I don't want to come across like I'm being rude (I read over the post and I do feel I'm a little harsh, sorry) but I want people to realize it's okay to come to me to ask me things. I wouldn't have known a lot of things (like feeling pain in the legs even though I can't feel them) without going through it myself or asking others. I still ask other people who are a spinal cord injury what they deal with because even though it's similar, we are all different.
DeleteI just want my readers to know that I'm open to talk about it and educate them on things they may not know otherwise. It just kind of upsets me when people approach it as if I'm a vegetable.
As far as the pain goes, I typically take advil or lay on some sort of heating pad. It typically helps. (:
You blocked me on Twitter (I guess I came across as creepy when I said I wanted to explain my situation via DM, which I couldn't do since you didn't follow me).
ReplyDeleteBut my situation is similar to your friends, but also not. Hence me saying I'd like to explain via DM. But anyways, it is indeed frustrating. But so many unknowns also give way to many possibilities, I guess. Also, I agree with your sentiments in the rest of the post.
If I blocked you, I'm sorry. I don't remember blocking you or having reason to block you. Nor do I know how to unblock you. I'm sorry about that. I could have done it by mistake or I could have felt creeped out. I don't honestly remember + I'm sorry about that. What's your twitter name? I can try to figure out what happened.
DeleteI would love to talk about it. I'm always open to new friends.
Thanks so much for posting this and being so honest. From reading your blog recently, I had no idea you were injured. Which is to say, that I don't think it makes you any different or useless or helpless. It's so terrible that people feel that way, but it is true. I think people are scared of wheelchairs, injuries, disabilities, and anything different than themselves. It's a backwards system. I went back and read your original post and I'm so sorry that the accident happened, but I'm glad that you lived and have grown so much stronger. Keep on stayin' strong and keep on being completely positive and honest.
ReplyDeleteThanks again for reading. (:
DeleteI think you're right about being scared. I will admit I would always steer clear of people who were in wheelchairs. I actually was nasty in my thoughts before I had my wreck + I'm thankful that I have the chance to correct it now. I never realized what a struggle some people face + now I learn to watch my words/actions.
"Just because I can't walk doesn't mean I can't be successful + independent."
ReplyDeletePreach. I don't understand how people can be so ignorant sometimes.
I have a good friend I met from Tumblr, she's in a wheelchair too cause by an accident years ago... And she's one of the MOST successful people I know. She started up her own T-shirt business and it's pretty successful. She'd do everything, from printing them herself, having the designs pressed herself, etc etc. And then she organizes the photoshoots and is hands on with her business 24/7. And heck, I find she's even more successful than I am!
People will always be ignorant, and very rude or tactless, they can get pretty annoying but it's best to ignore them. These kinds of people are usually the ones who always get no where in life or live miserably.
<3
Camie
http://wild-spirit.net