queensara33

This card thing is a good idea. I should pass it to a few friends of mine. We all have cerebral palsy from brain injuries and their speech and walking patterns have gotten them the wrong type of attention for perceived intoxication:(

Do you have any advice for when you get frustrated you can't do something, specifically the upper body or energy wise?

I have very little use of my right hand amongst many other things including neurological issues and lately I've been really frustrated with the tons of things I can't do( or finish )because of my disabilities. A lot of able bodied people say things that just feel like empty platitudes because they don't have a clue what it's like, and they love to be all "you're inspirational, I couldn't do that" and it's exhausting. By" that", I mean existing. We don't have a choice.

I'm glad you did this AMA. I wish I knew you in real life so we could have the chance to be friends because people who understand the physical struggles are few and far between.

I'm sorry if this is all really awkward, it's been a stressful night so I'm not the best at saying my thoughts right now.

Thank you for saying that the fact we attempt things matters especially... My family has always been "you can do things exactly like anyone else" but it's simply not true because when I fail I'm told I'm not trying hard enough when I just can't push myself past go and am giving 100%. Like I think I know my own limits better than others, but it still gets to me even though I know they're trying to be encouraging ( if ignorant!)and I struggle not to be jealous and bitter even with many years of therapy. Growing up like this all your life is a blessing and a curse because we know nothing else. Maybe it would feel more cruel if we did know what it was like to be able bodied.i don't know.

I would love to be internet friends! I'm 22f and this post reminded me I'm not alone and that was a priceless gift when I'm feeling more and more useless because I keep falling behind in so many expectations, plus maybe we can swap stories and things. Like is it hard to lift yourself up out of the wheelchair one armed to get on the toilet? I don't have one yet but I broke bones in my feet a few times and I wouldn't be surprised if it happens again plus for really long trips I've been begging for years to get a wheelchair for when it's too much( I basically was even more dependent on my parents then I already was and it sucked). And I don't have anyone to ask these sort of questions, most of the physically disabled people I know have their arms and hands unaffected or I hear it's rude to ask even though I'm just trying to know what to expect? I've lost a lot of stamina in the past couple years as more life expectations grew and I used to have a walking brace but it doesn't work for me anymore... I just want to be prepared because I know my body will need to rely on one one day. I want to get involved with disability advocacy groups but I'm still trying to figure that out.

I do have two adorable bunnies and they make me feel like I have a purpose though:)

Ohmygosh. Reading this AMA and watching your videos made me laugh so much. I knew I knew your username from somewhere... you're great. Thank you for being you. These times suck but you definitely help by existing. Also thank you for unintentionally reassuring me that I'm not crazy regarding synesthesia. Is Ramses your favorite egyptian pharaoh? Who's your favorite egyptian deity? I feel like I have to ask that as someone who's been obsessed with ancient Egypt for over 10 years. Also, are you aware of the king tut comics? https://www.instagram.com/p/CGAi88yH2EV/?igshid=4umyc5apn7t1 maybe you'll like them too!

Do you have a service dog? I really want one for mobility. Also have cp and very worried about losing vision because my mobility is super dependent on my sight. Wondering if you have any tricks to share since you are visually impaired that might help me in nonlighted situations

Also it seems a lot of us become writers:)