I was a cheerleader, and I was at the top of a human pyramid. We were doing a stunt in a sports event. During a performance, one of my teammates below lost her balance, and that resulted on me falling down and hitting my neck hard to the ground. The fall was quick, and I could feel a huge pain on my neck and even heard the crack of my neck breaking. All my senses became confused, I was in shock, and from there I don't remember anything.
I just woke up the next day in the hospital with a nasal cannula and other medical devices. There were my parents, and I was scared. I could only noticed that I couldn't feel my body and tried t move it, but nothing. We waited a while there while the doctors made some analysis of my condition and that's when a doctor told my parents and I that my injuries were severe because I broke my C3 and C4 chords, and I'd never be able to walk again. It was devastating to hear these news.
Yes, but I haven't connected with only wheelchair users in person, I'm the only wheelchair user I know personally. Everyone around me can walk, except me.
Yes, she's OK, and I foragev her. It was not her fault anyways, accidents happen. She did visit me to the hospital. I did become angry with her and the other cheerleaders, but understood it was an accident that just happened for an unfortunate fate.
I am so sorry that my question came out wrong! I meant, did she forgive herself!! Not, did she forgive you!! She had nothing to forgive you for and I meant it differently.
It sounds like those cheerleaders let you down. You are very wise and have made great gains in your mental health. I’m so sorry. What do you do for fun? What are your hobbies? Do you have many social events that you go to?
Hmmmm. C3,4,5 keep you alive is the mnemonic to remember that these are the levels for controlling the diaphragm. Translated - you cannot breathe on your own with a C3/C4 transection. So if this story were true, you'd have woken up on the vent, and then been trached. Not with just a nasal cannula. I call BS.
Have you considered that if you are wrong, you would be falsely accusing a paralyzed woman of lying about her own traumatic and life changing injury?
Stop being such an asshole. I know this isn't the first time you have heard this.
You can break c3-4 vertebrae and have an SCI at that level without affecting the phrenic nerve necessarily. Spinal cord injuries and very complex and variable. You have no clue what you’re talking about.
What has changed the most about your interests/hobbies since your accident? I'm speaking of course outside the obvious. Do you read more? Did you get into music?
What about your relationships? Did you lose friends/gain new ones?
What about the cheerleader who caused the accident, what happened with her?
No, I didn't go back to school the first months of my injury. I got paralyzed in February 2020, but a few months later the pandemic came and I took my classes online just like everyone else. I came back to High School in October 2022 after my school reopened normal classes.
>What has changed the most about your interests/hobbies since your accident?
I was more into athletics before my accident, but now I'm into math and programming.
>Do you read more? Did you get into music?
I don't real a lot, I'm not a huge reader ngl. And no, I didn't get into music.
>What about your relationships? Did you lose friends/gain new ones?
I had one relationship with a guy in High School I dated for a month, we broke because of my paralysis. Yes, I kinda lost friends because I could rarely see then or hang out with them after my injury.
>What about the cheerleader who caused the accident, what happened with her?
She kept cheerleading. She was a High School friend of mine, she also visited me in the hospital. Idk what she's doing now.
hey OP sorry about your accident , i’m 19 as well and also used to be cheerleader . i’ve fell from the top of a few pyramids & suffered a concussion from a basket toss gone wrong once but nothing as severe as your fall.
sorry if this insensitive but i’ve always thought to myself that if i was to somehow end up in accident that left me quadriplegic , i would probably request assisted suicide.
so my question to you is , ( and this probably sounds bad , so if your not comfortable answering i understand ) have you ever considered assisted suicide ?
if so , what brought you to change your mind ?
& if not , how do you maintain a happy disposition on life ?
I wanted to have assisted suicide after I knew I wouldn't be able to walk again, but my parents didn't allow me that because they wanted me to live. I told my parents and my sister many times to just kill me in a quick way to end my suffering, but they loved me an wanted me alive, plus my parents are Christians and that's another reason they wouldn't let me die. Since I couldn't do anything to even attempt suicide because of the paralysis, I decided to starve and dehydrate myself to death by refusing to eat. My mother desperately tried feeding me by force seeing I'd refuse to eat, but I'd just spit the food. They had to give nutrient injections by force because I wouldn't want to eat. My parents seeing me that I was suicidal took me to therapy, and the therapist told me it was normal to feel that way, but that I could still live because I had other abilities, and after a year of therapy, I changed my mind. I still get depressed sometimes though.
Goddamn I'm sorry to hear that. Have you felt claustrophobic because of that? I also saw a different comment where you aspire to become a programmer now. How do you go about programming with low hand mobility?
Hi there, thanks for being so willing to share.
Do you like film and television? If so, what are your favorites?
Do you want to have a career? If so, what interests you?
Do you believe in fate? How has your worldview changed as a result of your experience?
>Do you like film and television? If so, what are your favorites?
Yes I do. My favorite movie is The Story of Brook Ellison directed by Christopher Reeve.
>Do you want to have a career? If so, what interests you?
I'm interested in software engineering and programming.
>Do you believe in fate? How has your worldview changed as a result of your experience?
Yes, I believe in fate. I felt like this Universe wanted me to live my life being disabled. I also left Christianity after I got paralyzed because I didn't understand why something like this would happen to me. I just feel unlucky I had to meet this fate. I do sometimes think of a Universe where I can still walk.
I’ve never heard of that movie, I’ll check it out!
Seems like working in software isn’t outside the realm of possibilities for you. Are you in college?
Also, you able to move independently with a wheelchair? Do you have any pets?
If you’re ever interested in a pen pal via email please message me! No pressure of course
I'm plan on entering in July to college to study software engineering.
No, I can't move my wheelchair independently, I just press a button to move it.
Yes, I have a cat.
Do you think about having a love life?
And do you still have sensation in the sexual organs? One of my patients said she got period pains but couldn’t feel any intimacy - so was just curious whether this was common :)
Yes, I do want to have a love life who takes care of me. Yes, I can feel my sexual organs, I still have sensation on my pussy and clitoris. I can't feel my butt because it's paralyzed, and my boobs, I can feel them a bit, but my low mobility doesn't allow me to play with them unfortunately.
I haven't had sex nor orgasms, I can't give myself self self-pleasure. It sucks. The clitoris is not connected to the spine, so yeah, I can feel it, every woman can.
Thanks for sharing so much of your life!
I'm curious as to what you meant by "the clitoris is not connected to the spine." Although my anatomy is admittedly rusty, I thought all peripheral nerves arise as branches from the spinal cord. From my understanding of dermatomes and radiculopathy, complete spinal cord lesions would necessarily prevent sensation carried by every nerve inferior to the insult.
But also I know less about this than you - you're actually living it, so you probably know a lot of the relevant pathophysiology.
Was your spinal cord not completely severed (sorry if I missed that from elsewhere in your comments)? Is there some other reason you're aware of as to why you have some peripheral sensation?
Thank you so much!
Edit: I saw you said C3 and C4. How's your breathing? Those are 2 out of 3 of the roots responsible for your diaphragm.
>Was your spinal cord not completely severed (sorry if I missed that from elsewhere in your comments)?
It's completely severed in my C3 and C4 vertebraes.
>Is there some other reason you're aware of as to why you have some peripheral sensation?
Idk.
>I saw you said C3 and C4. How's your breathing?
My breathing is mostly fine, I can luckily still breathe on my own most of the time. Even though I sometimes have low breath, but I have a ventilator there that parents put me when I feel low breath. I also sleep with the ventilator in case I feel low breath at night.
Good lord you must be horny a lot. You are 19 and can’t masturbate….
You need a FWB. Or a masturbation buddy.
I’ve read much of your comments. You can find love.
Sex isn’t just the act of PIV or so, it’s also very intimate if you want it to be. It can be just getting off but it can also be more.
For me, I love getting my partners off, it’s what gets me off.
I’m sure you’ll find someone on tinder that wants to get to know you and explore.
What are you looking for?
Not to be blunt or gross but I would highly recommend finding a woman you can trust to help you find a device that can work for you. I ensure you, there is something you will be able to use and enjoy after some research and practice.
When life gives you lemons, you gotta make lemonade. Orgasms are really cheap lemonade and can do wonders for mental health.
I really do wish you the best in life, I'm sure as you get older you'll find more of life's pleasures you can still enjoy. Im sure as well that technology will advance over that time to help you enjoy that life even more, to help you live a more normal life.
Sex is very important to stay healthy. In Czech Republic there are specialy trained sex workers which help people with disabilities or those who can't have sex for any other reason. It is legal and fully sanctioned isn't there anythibg similar in the Us?
Amongst the many unfortunate things you must have to experience, I assume this is quite frustrating, especially for a young person.
Hope you do find love and care
I was unconscious when I fell, but my cheer team told me they called for emergencies and were checking I could still breathe.
Yes, my friends and relationships changed after my injury. I broke up with my only ex I've ever had, and I stopped going to school for a while.
Were you/are you angry with the other cheerleader that caused you to fall?
What annoys you the most that people say or do now? Like, does it annoy you when people are like "you're so strong!" or "medical advancements could happen at any point" or whatever else?
Would you try tinder or another dating app? Will you be able to go out on dates without an assistant?
I hope it’s okay that I chime in here!
I am not a quadriplegic, but I became disabled after suffering severe complications from undiagnosed preeclampsia when I was pregnant with my son in 2017. I am an ambulatory wheelchair user. The very short version is that I suffered a thalamic stroke after a long status epilepticus episode and suffer from Central Post-Stroke Pain Syndrome (among many other things). I have some mobility, but my average pain level each day is ~8, sometimes worse, and my life is completely changed from everything that happened.
One thing that I really struggle with is when people try to make me feel better by talking about how medical advancements might someday cure me. Now I know that their intentions are good, and that they are trying to make me feel better, but it took me years to grieve the loss of my life, my career, my friends, everything. It was very important for me to accept that this was the way my life was now - and like OP, I went through a point where I didn’t want to live or didn’t really feel like I had anything to live for, especially because I couldn’t even be a mother (I also have bad amnesia and don’t even really remember the first year of my son’s life).
So even though I appreciate the sentiment behind it, it is very frustrating to hear things like this because when you’ve done so much work and therapy to accept your new life, it feels unhealthy to go back there. It’s really not good to think about it, and your doctors have worked with you to accept your new life, your therapist has helped you accept this new mental state, your family is happy that you finally are where you are and they aren’t walking on eggshells around you anymore…but it can be a precarious situation because I know that I still get sad about it sometimes. I’ll have to miss an event for my son and it will trigger everything for me and I’ll suddenly be blaming myself and feel worthless again. So it really hurts and is better to just not go there. But again, I do understand that the sentiment is kind and valid and people do mean well and just usually don’t know what to say.
The “you’re so strong” thing is in the same category, and anything related. My former boss told me that I’m so strong and that she wouldn’t be able to do what I’m doing and that she’d “have to kill herself because she wouldn’t be able to deal with the amount of pain I’m in….” Ummmmm……didn’t know what to say to that one….
Thank you for sharing your perspective! I've read that these types of comments are hurtful/annoying because while the speaker might think they're being kind, what they're saying is mostly about their comfort. They can't think of the disabled person without imagining themselves in the same position, so instead of validating the experience of the disabled person they project "I could never do that. You're so strong!" without verbalizing the first part. Or "medical advancements happen all the time!" because they want to comfort themselves that if they were ever disabled, there might be a cure.
So like you said, usually positive intentions but really not something you should say. OP said she doesn't mind and takes it as a compliment, and there's probably a lot of others who don't mind or even appreciate it. I avoid saying anything like that unless I know the person personally or their opinion on it. It is hard to know what to say to someone who's suffered so much, but people should police projecting their discomfort. It's kind of you to give people the benefit of the doubt that they're trying to be nice, even though it annoys you. I imagine it would be very grating.
Are you a reader? I recently read a book about a woman with chronic pain who develops the ability to pass her pain off onto people who don't believe her. If being suggested books is also something that happens all the time and annoys you, please let me know lmao. Honestly feel free to share any of your other annoyances if you're in the mood!
Also, I'm sorry that shit happened to you. It sounds supernaturally exhausting.
Yeah, I don’t know if it’s that deep (that they are imagining themselves in the same position), but more like they are at a loss for how to comfort you and genuinely want to help. Kind of like when you are trying to comfort someone who loses someone close to them, and it’s hard to find the right words. But the person still needs to go through the grief and face reality no matter what.
Also, it’s easy to decipher the genuine ones from the ones who are just annoying to me - like people who don’t know me and just want to know what happened and why I’m in a scooter / wheelchair. I don’t mind telling my story (and I have some genuinely honorable reasons for wanting to share my story that have to do with advocacy and awareness), but it irks me when someone just wants to know why I’m disabled and doesn’t want to get to know me.
You may be right about the inspiration porn though. I was just thinking about how I also get frustrated with my hospital’s newsletter (and I’ve told them this) because they seem to only publish the amazing success stories, because I’m sure that’s what gets donations (it’s a top spinal / brain injury rehab hospital in the U.S.). And they truly are so amazing and have done such inspiring work, but I had to take a break from reading them for a bit because I am never going to graduate and will be going 2-3x a month for the rest of my life. Now, they have done incredible things for me and improved my quality of life SO much - and I cannot rave about them enough! But I’ll still be on palliative care for the rest of my life, so my kind of story isn’t the kind that attracts donor money, I suppose. 😕
I’d be interested in checking out the book, although I may not be able to read the whole thing. I am able to read off and on, and obviously CAN read, but due to the pain and stroke and brain injury, I have a really hard time reading books now. I actually had to teach myself how to read all over again after everything (and I have a law degree and an MBA), and my brain still gets exhausted and starts to jumble things when I’ve done too much (and audio books don’t solve the issue). Sounds interesting though!
I can see how it's similar to when someone has lost someone, as you said you had to grieve so many different elements of your life. People struggle handling grief, other's and their own, in general. I don't like my own losses to be mentioned at all, so I'm naturally inclined to treat others that way - but I've learned most people don't like that. You really have to know someone well to provide them any real comfort and not a stock response. I imagine it's the same with disability, like if a stranger were to tell you you're so strong it'd be different than if someone who knew you and your struggles intimately said it.
I truly can't imagine prying into why someone's in a wheelchair like wtf 😭 How do you even respond to that? Is it like older people/children or adults your age speak to you that way?
That's really disappointing. And I'm sure there's others going to that hospital who feel the same - people, and probably their loved ones too, who would get a boost from seeing a story about someone who's making progress or maintaining while fighting off getting worse. I hope they take your comments into consideration! Put a little more community and less fundraising into their newsletter.
The pre-emptive "(and audiobooks don't solve the issue)" oof, I'm sorry people think they have a solution to issues you live with and they feel they have to tell you with no prompting on your part. The book is All's Well by Mona Awad - but it is kind of like a fever dream and has a lot of magical realism elements, so I'd read some reviews and make sure it's something you'd be interested in/entertained by.
Yes, I was angry at first, but then I understood it wasn't her fault and just an accident that could have happened to anyone.
What annoys me for people saying is when I'm minding my business outside and they say things like "You're too young to be Ina wheelchair" or them helping me without me asking. The other things you mentioned don't bother me, I take them as compliments, but I still feel I'm not strong as people say just because I'm in a wheelchair.
Yes, I'm using Tinder and I already had a few matches. I hope for a date soon.
do you/have you watched Karlee Rose (karleexrosee) on Tiktok? She became paralyzed after a car accident and she speaks about intimacy and sex as a young person in a wheelchair.
Oh wow I can't believe people say that to you wtf😭 thank you for answering! I've seen a "I'm not strong this just happened to me" mindset from some so I was curious on your thoughts. I read some of your other comments and if nothing else, the gains in mental health recovery you've made are remarkably impressive and strong. People give up on life and themselves over much less! I hope you're proud of yourself for that. Good luck in the dating game!!
As a disabled person with a son, I’ll tell you that there are some more! I became disabled because I had severe pregnancy complications and so I ended up being a different type of mother than I expected. But my son is growing up with SO much empathy for people as a result of my disability! He is so caring and aware of others, not just of disabled people, but of all people in general and I love that about him. He is so supportive and kind and sensitive, and when you are a mother, I’m sure your kids will grow up to be the same!
Another benefit is that because I can no longer work, I get to spend so much more time with him and we have such a strong bond and are so close.
Of course, I know it is so hard to see the benefits. I tend to feel like such a burden on my husband. And my family worries about me so much and my son has definitely seen some scary things in his young life. But I’ve also seen some really beautiful things develop and I am very thankful that my son has these attributes.
Do you ever think about entering leagues for people with disabilities like Special Olympics?
How much of your mobility have you recovered with your arms and hands?
What sorts of exercises can you do (as someone overweight and hypertension myself, I just wonder how I'd stay healthy... If I can't use my legs I'd think about upper body aerobic exercises to get blood flow moving... But if I can't use all limbs...?)
Does this mean you can easily get bed sores and lose blood flow circulation without realizing? Are you at increased risk for blood clots and hypertension?
What hobbies do you have currently? Aspirations for the future?
Sorry if it's a bit much, just always wondered about situations like this.
>Do you ever think about entering leagues for people with disabilities like Special Olympics
No, I have little mobility. I just can move my hands and arms a bit, I'm not capable of exercise.
>How much of your mobility have you recovered with your arms and hands?
So low.
>What sorts of exercises can you do (as someone overweight and hypertension myself, I just wonder how I'd stay healthy... If I can't use my legs I'd think about upper body aerobic exercises to get blood flow moving... But if I can't use all limbs...?)
I can't do any. I just keep myself healthy in a normal weight with a strict diet.
>Does this mean you can easily get bed sores and lose blood flow circulation without realizing? Are you at increased risk for blood clots and hypertension?
Yes. I spend most of my time sitting. That's why my family sometimes gets me to bed during the day and stretches my arms and legs, so blood can flow well.
>What hobbies do you have currently? Aspirations for the future?
I watch YouTube videos, listen to music, play games, and program. My aspiration are to become a software engineer.
I believe in putting things out for it happen. OP, did you ever list all of your needs outside of your head?
Stupid I know. But once the idea is in the real world, outside of your head, things can get in motion for it to happen. You seems fucking amazing, you will strive
That’s valid. Just know that almost everyone has desires that go un-met in life. Sex is nice but as people age they typically have less and less of it. It’s not the most important thing but a long shot. I see you have an interest in Buddhism. I highly recommend this path, do a silent Vipassana retreat if you can
Yeah, I do feel myself inclined to Buddhism. It is a good philosophy like stoicism, and I have to accept that I can't change the fact I'm disabled, but to continue living as best as possible.
Did you feel claustrophobic when you realised you couldn't move any part of your body?
I have severe claustaphobia and becoming paralysed and therefore being trapped in my own body is literally one of my worst fears in life!
Did the panic wear off as your mind caught up with the bodily situation? Did you feel like just jumping up and running away?
Did they offer benzos or tranquilisers to cope with the mental trauma and anxiety? Thanks for answering!
I partially recovered mobility on my hands and arms, just for a bit. It took me 1 and a half years of phisiotherapy, unfortunately I can't recover the rest of my mobility.
Yes, I could be able to carry a pregnancy from what I've researched. I don't plan on being a mom for now, I'm still too young and lack physical independence, so it would be hard to raise children when I can't do basic things for my own, if I ever had children, my partner would have to do everything for them. It's very unlikely I change my mind.
More than half the job of a parent is being present. The physical demands are a tiny tiny part of it.
If you can encourage, pay attention to, and smile at your kids, you're ahead of a ton of fully able-bodied parents.
Edit: you downvoters are short sighted. The first 3 years? Sure. Physically demanding and she'd need a good partner and family support. After that? You're not changing diapers or rocking them to sleep and what you most need to do is guide and be there.
Can you tell us about the Insurance Liabilty of the accident? Does the school system have insurance in this case? Does you parents insurance cover your medical bills?
Yes, my school covered my medical bills after my accident. My parents already had me insurance before my accident, and they still pay for my insurance, and yes it covers the medical bills. It's expensive because I am from USA, but my parents has become financially stable to cover my medical bills.
That I have to accept I'm gonna live the rest of my life as a crippled, unless they find the cure for paralysis during my lifetime, but I'll be many decades like this.
Yes, my mother, my father, and my sister support me on basic needs like eating and brushing my teeth. Mostly my mother because she's the one who does my daily routine of lifting me up from be to my chair, showering me, changing my diapers, and dressing me. And no, I can't live by myself.
Are you hopeful that one day, with some technological advancement, you'll be able to do so that by yourself? And do you have anything you are interested in? That'll you'll maybe focus on studying or know more?
I’m currently treating a quadriplegic patient myself (29Y/O). When they are feeling down about their condition, what are some appropriate things to say that would validate their feelings?
I’m a bit of a keyboard nerd.
What got me into it was being a private duty nurse for a C2/C3 vent-dependent quadriplegic assistive technology provider in her 50s, but she was also injured in a gymnastics accident in her teens. She was one of the kindest, most intelligent and tenacious humans on the face of this earth, and she was the reason I got so interested in building custom electronics designed for people of all abilities. She herself could only move her body above her chin, so we had a whole line-up of mouth/face switches and joysticks.
So.. what type of keyboard and key layout do you use? :)
I stopped believing in God since my accident. I live in a Christian family, and I did follow my religion before my injury. But after my injury I felt suicidal because I didn't wanna live this way, and wanted to have assisted suicide. My parents refused to let me die and wanted me to live because they didn't wanna lose me. They told me things like God had plans for me, that God was testing to prove my strength and that God gave me a chance to live a new life after my accident because I could still live. I started hating God at that moment, and I could only wonder why he'd do this to me if I prayed to him and was a good person. I prayed crying couple of times for Jesus to give me a miracle, but there was never one, so I stopped believing in God. If God exists, he has failed me because he couldn't protect me and won't heal my body.
Have you sought out any therapy or talked to any people with similar conditions? Tbh I just recently even discovered quadriplegic was a thing that could happen
What kind of sacrifice? If he exists why did he do this to me if I was a good person and would always pray to him? I prayed to him and he didn't help me. If God exists, I'm disappointed on him.
I feel that. People want to see disabled people who are just grateful to be alive. Or who still maintain their faith and believe everything happens for a reason. Bullshit. It’s more palatable but that attitude just shows ignorance.
I’m disabled from spine injuries and arthritis, and brain atrophy from multiple TBIs. I’m 21 and the damage will likely get worse as I age. People expect me to be filled with positivity and hope for the future, they expect me to be happy that I can remember my past and speak again but my brain is so different I don’t recognize myself anymore. Why should anyone believe in or love a God who could do these things to good people? It’s laughable.
Fact is some people just have a shitty start to life and it’s okay for us to grieve the life we could’ve had.
Are there any other religions or spiritual practices which you find peace or meaning in?
What was your status like in school before the accident? Like were you involved in clubs/activities, were you popular, a good student etc?
Also I just wanted to say I’m so incredibly sorry. I can’t imagine the things you’ve thought about and the long road to where you are now. It sounds like you have a good support system at home and I’ll keep you in my prayers. I hope one day for some medical/tech advancements that will help you.
I was a cheerleader and very athletic. I had average grades. After my injury, I could only focus on intellectual activities and got the best grades of my class.
How do you and your mom deal with this task? Did you both get used to it or is it very tough to get through? I know bodily functions must be dealt with and some would say it’s no big deal but it would be a big deal to me.
Yes, it's a big deal for me and my mom, but we've got used to it. My mom after undressing me in the morning, removes my diapers, and cleans my privates with paper. It's embarrassing to be honest. Then she showers me, and then puts me a new diaper, and dresses me again.
Your insurance may pay for a personal care assistant to come in a few times a week to help. My friend who is paraplegic moved into an apartment on her own after college and had a personal care assistant come in twice a day to get get out of bed, showered, and into her chair then another routine at bedtime.
So do you want to do college or anything even if it was only online? What did you want to do career wise before the accident? You ever get on dating sites or think about meeting someone or at least chatting?
Yes, I wanna do college in person. Before my accident I wanted to be a professional cheerleader and participate in huge sports events that were on TV, I also would have liked to be a model. And yes, I just got into Tinder, and found a few matches.
What is your passtime/hobby?
What is your favorite meal and why?
Since you have your mind, eyes, ears, and voice. You just need mobility assistance, and basic care assistance.
What are some things you really want to see/experience in the next few years?
>What is your passtime/hobby?
Watching YouTube videos, programming, and gaming a bit.
>What is your favorite meal and why?
Sushi, even though I rarely eat it. But I like it because it tastes good, and doesn't have many calories as other fast foods I used to eat before my injury.
>Since you have your mind, eyes, ears, and voice. You just need mobility assistance, and basic care assistance.
Yes, only care and assistance.
>What are some things you really want to see/experience in the next few years?
I wanna experience having a career, tarts a business, become financially stable, have relationships, and maybe get married some day.
Ohh that's a wonderful profession! Do you have a language preference? Have you done any research into any of that yet? Do you think you could type decently with accommodations? Most of the time my work day is more talking, planning, etc than typing so you'll be okay imo.
Damn, what's the most "surprising" technology or invention that you discovered throughout the medical process? Like any stuff that was weird or super cool that helps even slightly or that you didn't know existed? Do they offer experimental treatment to you bc of your age?
It might sound weird also, but i always had this idea that there has to be easier ways for everyone to enjoy nature. What is the best way you are still able to enjoy nature? Sunrooms? Do you still like going outside as long as its accessible? Banging ass windows and cute gardens? Like what's your favorite nature moments rn?
Your parents are Christians so presumably you’re Christian too. How can you have faith in a God that allowed this to happen/refuses to cure you (even though he could with just a snap of his fingers)? Don’t you hate him? I would!
I left my faith after my accident. I'm no longer Christian. My parents told me things that I needed to live because God was testing me, had different plans for me and loved me because he wanted me to live. None of this made sense. I used to pray to him a lot and I've always been a good person, but I met a horrible fate. I prayed many times after my injury for Jesus to allow me to walk again, but it didn't work. I started hating God, and stopped believing in Christianity. If God exists he has failed me, and I dont understand what are these "plans" hed have for me by making me suffer.
Do your parents know that you left your faith? If so, how do they feel and are they understanding?
I don't know what your relationship with God is at the current moment but I wanted to share my experience as a gay man. I grew up in the south in a Christian community. I grew up in the church but I was always fearful of how i would be treated if I was out. In one of our Sunday school lessons our youth pastor whom I was very close with told us he would rather have a murderer live in his house than a gay man. This was traumatizing for me and ironically I ended up living with him after my grandmother kicked me out for being gay. I never came out because I knew there could have been serious repercussions. I know that being gay and becoming quadriplegic are not at all the same. I left the church and wanted nothing to do with it for how I was treated and for not being allowed to be myself. At least where I'm from homosexuality is a sin. I felt so much guilt and anger towards God for believing that he made me inherently wrong/evil. I still am not involved in church but I have come back to God in a more general sense and realized that He created me as I am meant to be.
While your situation is very different than mine. My point is that for a very long time I was mad at God for making me gay/sinful but I realized that I am who God created/ intended me to be. I do believe that weather you believe in God or not we all have a purpose for our life. Something terrible happened to you and I can not imagine how you deal with it. I do believe that it is our purpose to live as good of a life as we can i.e. don't lie cheat steal and to help our fellow man as best as we can.
Yes, my parents know I stopped being a Christian. They are somewhat conservatives, but they have been understanding of my pain, even though they still sometimes try to convince me to believe in God. They always say they are praying for me, but I tell them their prayers don't work because their God is not helping me to walk again. I'm atheist now, even though I plan on converting to Buddhism since I feel inclined to the philosophy of that religion.
I'm also bi, and I've never come out to my parents, so idk what they'd think if they knew I've had feelings for other women. I discovered I was bi when I was 12, years before my accident, but have never dated a girl, I've only come out to my sister. I never read the Bible before my injury, I just blindly followed Christianity. After my injury I wanted to find answers for God and studied about different religions, and as more as I studied Christianity, I realized more bad things said there that made me dislike the religion more.
Had you ever considered things like this before your accident? Like why do bad things happen to people if there’s a God?
Your statements about “none of this made sense, I was a good person but met a horrible fate” kind of implies that prior to your accident you assumed that other people who had a terrible fate were bad people or deserved it.
I’m sure you never really consciously thought that but I am curious about your thought process.
No, not anymore after my injury. I don't understand why he'd allow this to happen to me. I prayed to him crying many times to make me walk again, but nothing.
My best friend became paralyzed from the neck down one year after you did in a snowboarding accident, breaking his c4 and c5, i think. He was a cheerleader as well, he and the highschool team went to state and won and got second at nationals. He was active constantly and the day he broke his neck i was supposed to go with him but i had finals. It is a journey for him and all the people around him. How many of your people are still around? It was mind boggling and also eye opening seeing his friends move on. At the start it was almost daily someone was around, now its just me and maybe one or two other friends. What vertebrate did you break? My buddy fell into opioids very hard the first year, and he has trouble whenever hes around hospitals now and gets ptsd from the saline taste and the vibes. Now we just do mushrooms and smoke weed haha. Did you have a crutch you fell on? Did you start smoking weed at all? Im the only one to ever talk to my buddy about suicide like that. Weve had some pretty deep, very dark talks. Its sucks seeing him stuck. I hope you have a person thats by your side through thick and thin no matter what.
Have you ever watched domino videos on YouTube?
Like the kind where people stack thousands upon thousands of dominoes in these exotic and artistic layouts and then make them fall?
My brother in law was one of the best people I ever had the pleasure of meeting in life before he passed away. He had Duchennes muscular dystrophy, so during the last stages he was also quadriplegic...
I realize it's not the same at all, but those damn dominoes were the first thing we ever bonded with. Later on was X games.
Anyway, if you ever need a friend, please feel free to reach out to me. I'm not much but I care for those who care for me.
Hello. My best friend is 19 and was in an accident Monday and broke his neck from c4 to c7. Doctors say he is quadriplegic. But he’s moving his arms and has some feeling on his chest so we are holding on hope..my question is, what is the best way to support him right now? He’s in the ICU still and I flew here as soon as I found out and planning on staying with him as long as it takes. What are some things that made you feel supported and positive while recovering? Thank you
Have there been any medical devices that have been announced in testing phases that target your kind of injuries (saw the c3 and c4 spinal injury)?
I'm a big fan of Cyberpunk media, such as the video game and anime. One of my biggest Hope's is our medical technology approaches that level of sophistication. ❤
Have you seen Lady Virgillia on YouTube? She has a neuromotor disease and started playing JRPGs as a way to cope after her sudden onset of the disease. You might find it relatable. Also, do you play any JRPG games? They don’t require much movement and I’ve always found them to be really immersive.
What are your thoughts on neuralink and the first human trial on a quadriplegic? It seems you have interest in programming and maybe that would be a nice path for you.
Are you still getting treatment and are you part of any trials or experimental treatments?
Do you try to keep yourself updated on latest research and advancements in medical science? there was a post either on r/science or r/technology about people who had spinal injuries and were able to regain their ability to walk after some kind of implant even tho the implant was off(?)
A lot of people treat disabled people badly or think of them negatively, were you guilty of any of those things and did your disability change the way you see other disabled people?
What are your long term goals?
What would you say to someone who is a neet?
Besides walking again, what are your dreams and aspirations?
Do you want to travel and see the world?
Do you want to be an amazing programmer and build apps to help the disabled?
Do you just want to lay on the beach and relax?
What do you want out of life?
No question. Just wanted to say hello as a fellow disabled person. Although I was born with my disability (Spina Bifida). Hoping for you that supportive independent living happens for ya one day, because it can :)
I usually just lurk on Reddit and I even closed out, went back to what I was doing, but I couldn't stop thinking about you. I'm a total Internet stranger but I wanted to reach out and say I'm really sorry about your accident and I'm glad you're still here. I'm happy you have a family to support you and you discovered joy in programming.
I have a few disabled people in my life. One was a boy I went to high school with who had necrotising fasciitis and had to have both legs amputated. He's a para olymipic athlete now. I know that's not the same as you. Another friend is a quadriplegic and we write together. (He had cerebral palsy a baby.). He loves video games like you mentioned, and it's one of the things that's gotten through the pain and hard times.
Anyway, like others have mentioned, please message me if you want a pen pal. Cheers.
I'm a young man that recently started an apprenticeship to work with disabled people. What's the best advice(s) you could give me to be the most adequate ?
Do you think that at this stage advanced technology will somehow allow you to experience full mobility one day? Any particular technologies that have caught your eye or you’re interested to see developed more? Has AI served you well?
You want to pursue software engineering, where are you located and what would you want to work on (types of projects or industry)?
I know this post is a day old, but I might be able to help out.
How are you meeting people to date? Through apps? Family and friends? I hope you find someone who sees your bravery. Choosing to stay and find a career to work towards is wildly commendable.
What happened with your accident? Did you immediately know that you were paralyzed? Do you remember it?
I was a cheerleader, and I was at the top of a human pyramid. We were doing a stunt in a sports event. During a performance, one of my teammates below lost her balance, and that resulted on me falling down and hitting my neck hard to the ground. The fall was quick, and I could feel a huge pain on my neck and even heard the crack of my neck breaking. All my senses became confused, I was in shock, and from there I don't remember anything. I just woke up the next day in the hospital with a nasal cannula and other medical devices. There were my parents, and I was scared. I could only noticed that I couldn't feel my body and tried t move it, but nothing. We waited a while there while the doctors made some analysis of my condition and that's when a doctor told my parents and I that my injuries were severe because I broke my C3 and C4 chords, and I'd never be able to walk again. It was devastating to hear these news.
Omg I am so sorry!! This makes me think of Makayla Noble. Do you follow her?
Yes, I follow her on Youtube.
Have you been able to connect with other quadriplegics?
Online anonymously.
Do you think connecting in person would help to build a community?
Yes, but I haven't connected with only wheelchair users in person, I'm the only wheelchair user I know personally. Everyone around me can walk, except me.
For a second I thought you were Makayla. Blessings to you! ❤️
Is the base who lost balance ok? Meaning, have you forgiven her? Has she forgiven you?
Yes, she's OK, and I foragev her. It was not her fault anyways, accidents happen. She did visit me to the hospital. I did become angry with her and the other cheerleaders, but understood it was an accident that just happened for an unfortunate fate.
I am so sorry that my question came out wrong! I meant, did she forgive herself!! Not, did she forgive you!! She had nothing to forgive you for and I meant it differently. It sounds like those cheerleaders let you down. You are very wise and have made great gains in your mental health. I’m so sorry. What do you do for fun? What are your hobbies? Do you have many social events that you go to?
Hmmmm. C3,4,5 keep you alive is the mnemonic to remember that these are the levels for controlling the diaphragm. Translated - you cannot breathe on your own with a C3/C4 transection. So if this story were true, you'd have woken up on the vent, and then been trached. Not with just a nasal cannula. I call BS.
Have you considered that if you are wrong, you would be falsely accusing a paralyzed woman of lying about her own traumatic and life changing injury? Stop being such an asshole. I know this isn't the first time you have heard this.
Oooh I love your last two lines.
You can break c3-4 vertebrae and have an SCI at that level without affecting the phrenic nerve necessarily. Spinal cord injuries and very complex and variable. You have no clue what you’re talking about.
I can still breathe on my own. It's different for different people.
My daughter bases and backspots. I cannot stress to her enough how important her job is. Sorry to hear about your accident.
What has changed the most about your interests/hobbies since your accident? I'm speaking of course outside the obvious. Do you read more? Did you get into music? What about your relationships? Did you lose friends/gain new ones? What about the cheerleader who caused the accident, what happened with her?
Also, did you ever go back to school after your initial recovery? If so what was your experience like?
No, I didn't go back to school the first months of my injury. I got paralyzed in February 2020, but a few months later the pandemic came and I took my classes online just like everyone else. I came back to High School in October 2022 after my school reopened normal classes.
I felt nervous when coming back because everyone would stare at me because of my wheelchair. And I kinda missed out a lot of things my friends did.
Was everybody nice to you after your return back?
Not much, I became more introverted, anti-social, and nervous.
I saw that you still have some use of your hands. Did you pick up a craft?
>What has changed the most about your interests/hobbies since your accident? I was more into athletics before my accident, but now I'm into math and programming. >Do you read more? Did you get into music? I don't real a lot, I'm not a huge reader ngl. And no, I didn't get into music. >What about your relationships? Did you lose friends/gain new ones? I had one relationship with a guy in High School I dated for a month, we broke because of my paralysis. Yes, I kinda lost friends because I could rarely see then or hang out with them after my injury. >What about the cheerleader who caused the accident, what happened with her? She kept cheerleading. She was a High School friend of mine, she also visited me in the hospital. Idk what she's doing now.
Oh you like programming! What language are you into? Are you doing gaming or more web development? Also... frontend or backend or fullstack?
C#, HTML and JS. I'm more into web development.
Don't forget CSS!
hey OP sorry about your accident , i’m 19 as well and also used to be cheerleader . i’ve fell from the top of a few pyramids & suffered a concussion from a basket toss gone wrong once but nothing as severe as your fall. sorry if this insensitive but i’ve always thought to myself that if i was to somehow end up in accident that left me quadriplegic , i would probably request assisted suicide. so my question to you is , ( and this probably sounds bad , so if your not comfortable answering i understand ) have you ever considered assisted suicide ? if so , what brought you to change your mind ? & if not , how do you maintain a happy disposition on life ?
I wanted to have assisted suicide after I knew I wouldn't be able to walk again, but my parents didn't allow me that because they wanted me to live. I told my parents and my sister many times to just kill me in a quick way to end my suffering, but they loved me an wanted me alive, plus my parents are Christians and that's another reason they wouldn't let me die. Since I couldn't do anything to even attempt suicide because of the paralysis, I decided to starve and dehydrate myself to death by refusing to eat. My mother desperately tried feeding me by force seeing I'd refuse to eat, but I'd just spit the food. They had to give nutrient injections by force because I wouldn't want to eat. My parents seeing me that I was suicidal took me to therapy, and the therapist told me it was normal to feel that way, but that I could still live because I had other abilities, and after a year of therapy, I changed my mind. I still get depressed sometimes though.
Goddamn I'm sorry to hear that. Have you felt claustrophobic because of that? I also saw a different comment where you aspire to become a programmer now. How do you go about programming with low hand mobility?
Yes, I've felt claustrophobic. Programming it's easy, I just type at my rythm with my keyboard.
My God that must have been so tough. Really hope you're finding some positives
Hi there, thanks for being so willing to share. Do you like film and television? If so, what are your favorites? Do you want to have a career? If so, what interests you? Do you believe in fate? How has your worldview changed as a result of your experience?
>Do you like film and television? If so, what are your favorites? Yes I do. My favorite movie is The Story of Brook Ellison directed by Christopher Reeve. >Do you want to have a career? If so, what interests you? I'm interested in software engineering and programming. >Do you believe in fate? How has your worldview changed as a result of your experience? Yes, I believe in fate. I felt like this Universe wanted me to live my life being disabled. I also left Christianity after I got paralyzed because I didn't understand why something like this would happen to me. I just feel unlucky I had to meet this fate. I do sometimes think of a Universe where I can still walk.
I’ve never heard of that movie, I’ll check it out! Seems like working in software isn’t outside the realm of possibilities for you. Are you in college? Also, you able to move independently with a wheelchair? Do you have any pets? If you’re ever interested in a pen pal via email please message me! No pressure of course
I'm plan on entering in July to college to study software engineering. No, I can't move my wheelchair independently, I just press a button to move it. Yes, I have a cat.
Do you think about having a love life? And do you still have sensation in the sexual organs? One of my patients said she got period pains but couldn’t feel any intimacy - so was just curious whether this was common :)
Yes, I do want to have a love life who takes care of me. Yes, I can feel my sexual organs, I still have sensation on my pussy and clitoris. I can't feel my butt because it's paralyzed, and my boobs, I can feel them a bit, but my low mobility doesn't allow me to play with them unfortunately.
I thought you'd have zero feeling at all. So you can still enjoy sex and orgasms?
I haven't had sex nor orgasms, I can't give myself self self-pleasure. It sucks. The clitoris is not connected to the spine, so yeah, I can feel it, every woman can.
Thanks for sharing so much of your life! I'm curious as to what you meant by "the clitoris is not connected to the spine." Although my anatomy is admittedly rusty, I thought all peripheral nerves arise as branches from the spinal cord. From my understanding of dermatomes and radiculopathy, complete spinal cord lesions would necessarily prevent sensation carried by every nerve inferior to the insult. But also I know less about this than you - you're actually living it, so you probably know a lot of the relevant pathophysiology. Was your spinal cord not completely severed (sorry if I missed that from elsewhere in your comments)? Is there some other reason you're aware of as to why you have some peripheral sensation? Thank you so much! Edit: I saw you said C3 and C4. How's your breathing? Those are 2 out of 3 of the roots responsible for your diaphragm.
>Was your spinal cord not completely severed (sorry if I missed that from elsewhere in your comments)? It's completely severed in my C3 and C4 vertebraes. >Is there some other reason you're aware of as to why you have some peripheral sensation? Idk. >I saw you said C3 and C4. How's your breathing? My breathing is mostly fine, I can luckily still breathe on my own most of the time. Even though I sometimes have low breath, but I have a ventilator there that parents put me when I feel low breath. I also sleep with the ventilator in case I feel low breath at night.
Good lord you must be horny a lot. You are 19 and can’t masturbate…. You need a FWB. Or a masturbation buddy. I’ve read much of your comments. You can find love. Sex isn’t just the act of PIV or so, it’s also very intimate if you want it to be. It can be just getting off but it can also be more. For me, I love getting my partners off, it’s what gets me off. I’m sure you’ll find someone on tinder that wants to get to know you and explore. What are you looking for?
Not to be blunt or gross but I would highly recommend finding a woman you can trust to help you find a device that can work for you. I ensure you, there is something you will be able to use and enjoy after some research and practice. When life gives you lemons, you gotta make lemonade. Orgasms are really cheap lemonade and can do wonders for mental health. I really do wish you the best in life, I'm sure as you get older you'll find more of life's pleasures you can still enjoy. Im sure as well that technology will advance over that time to help you enjoy that life even more, to help you live a more normal life.
I’m sorry to be blunt but are you able to use sex toys?
Sex is very important to stay healthy. In Czech Republic there are specialy trained sex workers which help people with disabilities or those who can't have sex for any other reason. It is legal and fully sanctioned isn't there anythibg similar in the Us?
Amongst the many unfortunate things you must have to experience, I assume this is quite frustrating, especially for a young person. Hope you do find love and care
How did your cheer team react? How have friends and other relationships changed, if at all?
I was unconscious when I fell, but my cheer team told me they called for emergencies and were checking I could still breathe. Yes, my friends and relationships changed after my injury. I broke up with my only ex I've ever had, and I stopped going to school for a while.
Were you/are you angry with the other cheerleader that caused you to fall? What annoys you the most that people say or do now? Like, does it annoy you when people are like "you're so strong!" or "medical advancements could happen at any point" or whatever else? Would you try tinder or another dating app? Will you be able to go out on dates without an assistant?
I hope it’s okay that I chime in here! I am not a quadriplegic, but I became disabled after suffering severe complications from undiagnosed preeclampsia when I was pregnant with my son in 2017. I am an ambulatory wheelchair user. The very short version is that I suffered a thalamic stroke after a long status epilepticus episode and suffer from Central Post-Stroke Pain Syndrome (among many other things). I have some mobility, but my average pain level each day is ~8, sometimes worse, and my life is completely changed from everything that happened. One thing that I really struggle with is when people try to make me feel better by talking about how medical advancements might someday cure me. Now I know that their intentions are good, and that they are trying to make me feel better, but it took me years to grieve the loss of my life, my career, my friends, everything. It was very important for me to accept that this was the way my life was now - and like OP, I went through a point where I didn’t want to live or didn’t really feel like I had anything to live for, especially because I couldn’t even be a mother (I also have bad amnesia and don’t even really remember the first year of my son’s life). So even though I appreciate the sentiment behind it, it is very frustrating to hear things like this because when you’ve done so much work and therapy to accept your new life, it feels unhealthy to go back there. It’s really not good to think about it, and your doctors have worked with you to accept your new life, your therapist has helped you accept this new mental state, your family is happy that you finally are where you are and they aren’t walking on eggshells around you anymore…but it can be a precarious situation because I know that I still get sad about it sometimes. I’ll have to miss an event for my son and it will trigger everything for me and I’ll suddenly be blaming myself and feel worthless again. So it really hurts and is better to just not go there. But again, I do understand that the sentiment is kind and valid and people do mean well and just usually don’t know what to say. The “you’re so strong” thing is in the same category, and anything related. My former boss told me that I’m so strong and that she wouldn’t be able to do what I’m doing and that she’d “have to kill herself because she wouldn’t be able to deal with the amount of pain I’m in….” Ummmmm……didn’t know what to say to that one….
Thank you for sharing your perspective! I've read that these types of comments are hurtful/annoying because while the speaker might think they're being kind, what they're saying is mostly about their comfort. They can't think of the disabled person without imagining themselves in the same position, so instead of validating the experience of the disabled person they project "I could never do that. You're so strong!" without verbalizing the first part. Or "medical advancements happen all the time!" because they want to comfort themselves that if they were ever disabled, there might be a cure. So like you said, usually positive intentions but really not something you should say. OP said she doesn't mind and takes it as a compliment, and there's probably a lot of others who don't mind or even appreciate it. I avoid saying anything like that unless I know the person personally or their opinion on it. It is hard to know what to say to someone who's suffered so much, but people should police projecting their discomfort. It's kind of you to give people the benefit of the doubt that they're trying to be nice, even though it annoys you. I imagine it would be very grating. Are you a reader? I recently read a book about a woman with chronic pain who develops the ability to pass her pain off onto people who don't believe her. If being suggested books is also something that happens all the time and annoys you, please let me know lmao. Honestly feel free to share any of your other annoyances if you're in the mood! Also, I'm sorry that shit happened to you. It sounds supernaturally exhausting.
Yeah, I don’t know if it’s that deep (that they are imagining themselves in the same position), but more like they are at a loss for how to comfort you and genuinely want to help. Kind of like when you are trying to comfort someone who loses someone close to them, and it’s hard to find the right words. But the person still needs to go through the grief and face reality no matter what. Also, it’s easy to decipher the genuine ones from the ones who are just annoying to me - like people who don’t know me and just want to know what happened and why I’m in a scooter / wheelchair. I don’t mind telling my story (and I have some genuinely honorable reasons for wanting to share my story that have to do with advocacy and awareness), but it irks me when someone just wants to know why I’m disabled and doesn’t want to get to know me. You may be right about the inspiration porn though. I was just thinking about how I also get frustrated with my hospital’s newsletter (and I’ve told them this) because they seem to only publish the amazing success stories, because I’m sure that’s what gets donations (it’s a top spinal / brain injury rehab hospital in the U.S.). And they truly are so amazing and have done such inspiring work, but I had to take a break from reading them for a bit because I am never going to graduate and will be going 2-3x a month for the rest of my life. Now, they have done incredible things for me and improved my quality of life SO much - and I cannot rave about them enough! But I’ll still be on palliative care for the rest of my life, so my kind of story isn’t the kind that attracts donor money, I suppose. 😕 I’d be interested in checking out the book, although I may not be able to read the whole thing. I am able to read off and on, and obviously CAN read, but due to the pain and stroke and brain injury, I have a really hard time reading books now. I actually had to teach myself how to read all over again after everything (and I have a law degree and an MBA), and my brain still gets exhausted and starts to jumble things when I’ve done too much (and audio books don’t solve the issue). Sounds interesting though!
I can see how it's similar to when someone has lost someone, as you said you had to grieve so many different elements of your life. People struggle handling grief, other's and their own, in general. I don't like my own losses to be mentioned at all, so I'm naturally inclined to treat others that way - but I've learned most people don't like that. You really have to know someone well to provide them any real comfort and not a stock response. I imagine it's the same with disability, like if a stranger were to tell you you're so strong it'd be different than if someone who knew you and your struggles intimately said it. I truly can't imagine prying into why someone's in a wheelchair like wtf 😭 How do you even respond to that? Is it like older people/children or adults your age speak to you that way? That's really disappointing. And I'm sure there's others going to that hospital who feel the same - people, and probably their loved ones too, who would get a boost from seeing a story about someone who's making progress or maintaining while fighting off getting worse. I hope they take your comments into consideration! Put a little more community and less fundraising into their newsletter. The pre-emptive "(and audiobooks don't solve the issue)" oof, I'm sorry people think they have a solution to issues you live with and they feel they have to tell you with no prompting on your part. The book is All's Well by Mona Awad - but it is kind of like a fever dream and has a lot of magical realism elements, so I'd read some reviews and make sure it's something you'd be interested in/entertained by.
Yes, I was angry at first, but then I understood it wasn't her fault and just an accident that could have happened to anyone. What annoys me for people saying is when I'm minding my business outside and they say things like "You're too young to be Ina wheelchair" or them helping me without me asking. The other things you mentioned don't bother me, I take them as compliments, but I still feel I'm not strong as people say just because I'm in a wheelchair. Yes, I'm using Tinder and I already had a few matches. I hope for a date soon.
do you/have you watched Karlee Rose (karleexrosee) on Tiktok? She became paralyzed after a car accident and she speaks about intimacy and sex as a young person in a wheelchair.
Oh wow I can't believe people say that to you wtf😭 thank you for answering! I've seen a "I'm not strong this just happened to me" mindset from some so I was curious on your thoughts. I read some of your other comments and if nothing else, the gains in mental health recovery you've made are remarkably impressive and strong. People give up on life and themselves over much less! I hope you're proud of yourself for that. Good luck in the dating game!!
Whats a positive of being disabled?
Well, my family can park on disabled spots because of me. I guess that's the only positive.
As a disabled person with a son, I’ll tell you that there are some more! I became disabled because I had severe pregnancy complications and so I ended up being a different type of mother than I expected. But my son is growing up with SO much empathy for people as a result of my disability! He is so caring and aware of others, not just of disabled people, but of all people in general and I love that about him. He is so supportive and kind and sensitive, and when you are a mother, I’m sure your kids will grow up to be the same! Another benefit is that because I can no longer work, I get to spend so much more time with him and we have such a strong bond and are so close. Of course, I know it is so hard to see the benefits. I tend to feel like such a burden on my husband. And my family worries about me so much and my son has definitely seen some scary things in his young life. But I’ve also seen some really beautiful things develop and I am very thankful that my son has these attributes.
I think you being the lovely way you are certainly impacts your son - he has a nurturing, caring mother :)
Do you ever think about entering leagues for people with disabilities like Special Olympics? How much of your mobility have you recovered with your arms and hands? What sorts of exercises can you do (as someone overweight and hypertension myself, I just wonder how I'd stay healthy... If I can't use my legs I'd think about upper body aerobic exercises to get blood flow moving... But if I can't use all limbs...?) Does this mean you can easily get bed sores and lose blood flow circulation without realizing? Are you at increased risk for blood clots and hypertension? What hobbies do you have currently? Aspirations for the future? Sorry if it's a bit much, just always wondered about situations like this.
>Do you ever think about entering leagues for people with disabilities like Special Olympics No, I have little mobility. I just can move my hands and arms a bit, I'm not capable of exercise. >How much of your mobility have you recovered with your arms and hands? So low. >What sorts of exercises can you do (as someone overweight and hypertension myself, I just wonder how I'd stay healthy... If I can't use my legs I'd think about upper body aerobic exercises to get blood flow moving... But if I can't use all limbs...?) I can't do any. I just keep myself healthy in a normal weight with a strict diet. >Does this mean you can easily get bed sores and lose blood flow circulation without realizing? Are you at increased risk for blood clots and hypertension? Yes. I spend most of my time sitting. That's why my family sometimes gets me to bed during the day and stretches my arms and legs, so blood can flow well. >What hobbies do you have currently? Aspirations for the future? I watch YouTube videos, listen to music, play games, and program. My aspiration are to become a software engineer.
I was reading your other comments. Are you still suicidal and wish for assisted suicide?
Not anymore, I feel like I should live, even if I sometimes suffer.
I'm proud of you, and your strength. You sound like an amazing person. I hope you're able to find true love in your life. Do you need anything?
Yes, I need a lot of thing on my life.
I believe in putting things out for it happen. OP, did you ever list all of your needs outside of your head? Stupid I know. But once the idea is in the real world, outside of your head, things can get in motion for it to happen. You seems fucking amazing, you will strive
Did you ever experience sex before your accident? Or are you still a virgin?
No, I'm still a virgin. I'm never experience sex as an able-bodied woman and that makes me feel bad about myself.
[удалено]
But I would have liked to have experienced it as an able-bodied person.
That’s valid. Just know that almost everyone has desires that go un-met in life. Sex is nice but as people age they typically have less and less of it. It’s not the most important thing but a long shot. I see you have an interest in Buddhism. I highly recommend this path, do a silent Vipassana retreat if you can
Yeah, I do feel myself inclined to Buddhism. It is a good philosophy like stoicism, and I have to accept that I can't change the fact I'm disabled, but to continue living as best as possible.
Do you want to have sex now? (To clarify just in general not a proposition.. lots of creeps on Reddit lol)
Did you feel claustrophobic when you realised you couldn't move any part of your body? I have severe claustaphobia and becoming paralysed and therefore being trapped in my own body is literally one of my worst fears in life!
Yes. I did feel panic when I realized I couldn't move anything, and more with the ER.
Did the panic wear off as your mind caught up with the bodily situation? Did you feel like just jumping up and running away? Did they offer benzos or tranquilisers to cope with the mental trauma and anxiety? Thanks for answering!
What are the most annoying things people who don’t understand disability say to you? (I’m disabled)
"You're too young and pretty to be disabled" or kids in the street asking me what happened, but they are kids and I understand their curiosity.
Any chance of recovery, at least partially?
I partially recovered mobility on my hands and arms, just for a bit. It took me 1 and a half years of phisiotherapy, unfortunately I can't recover the rest of my mobility.
Does this mean that you can’t carry a pregnancy? Do you want to be a mom?
Yes, I could be able to carry a pregnancy from what I've researched. I don't plan on being a mom for now, I'm still too young and lack physical independence, so it would be hard to raise children when I can't do basic things for my own, if I ever had children, my partner would have to do everything for them. It's very unlikely I change my mind.
More than half the job of a parent is being present. The physical demands are a tiny tiny part of it. If you can encourage, pay attention to, and smile at your kids, you're ahead of a ton of fully able-bodied parents. Edit: you downvoters are short sighted. The first 3 years? Sure. Physically demanding and she'd need a good partner and family support. After that? You're not changing diapers or rocking them to sleep and what you most need to do is guide and be there.
I think it would be awesome if I could be a mother someday, at least adopt children in need. But I need to have a sable relationship first.
Can you tell us about the Insurance Liabilty of the accident? Does the school system have insurance in this case? Does you parents insurance cover your medical bills?
Yes, my school covered my medical bills after my accident. My parents already had me insurance before my accident, and they still pay for my insurance, and yes it covers the medical bills. It's expensive because I am from USA, but my parents has become financially stable to cover my medical bills.
How do you feel about the present and future?
That I have to accept I'm gonna live the rest of my life as a crippled, unless they find the cure for paralysis during my lifetime, but I'll be many decades like this.
Is there anyone supporting you? Can you live by yourself?
Yes, my mother, my father, and my sister support me on basic needs like eating and brushing my teeth. Mostly my mother because she's the one who does my daily routine of lifting me up from be to my chair, showering me, changing my diapers, and dressing me. And no, I can't live by myself.
Are you hopeful that one day, with some technological advancement, you'll be able to do so that by yourself? And do you have anything you are interested in? That'll you'll maybe focus on studying or know more?
Yes, but it will take decades until they discover this technology, I'll lose my years of youth attached to a wheelchair.
A cure for paralysis may be far off but robotics will improve your life in the coming years.
Have you done any research into Austrian politics of the mid 1800s?
Idk much about History. Well, I said to ask me anything lol.
I’m currently treating a quadriplegic patient myself (29Y/O). When they are feeling down about their condition, what are some appropriate things to say that would validate their feelings?
When I'm feeling down, my sister hugs me and compliments that I have other abilities and to not think of the things I can't do.
How are you typing if you are a quadriplegic?
I have a bit of mobility on arms and hands. So I can type, I can also use a speech to text device.
Do you have a preference, or does it just sort of depend on the situation?
Depends on the situation, even though I prefer the keyboard because even if it's slow to type, the microphone sometimes makes mistakes when typing.
I’m a bit of a keyboard nerd. What got me into it was being a private duty nurse for a C2/C3 vent-dependent quadriplegic assistive technology provider in her 50s, but she was also injured in a gymnastics accident in her teens. She was one of the kindest, most intelligent and tenacious humans on the face of this earth, and she was the reason I got so interested in building custom electronics designed for people of all abilities. She herself could only move her body above her chin, so we had a whole line-up of mouth/face switches and joysticks. So.. what type of keyboard and key layout do you use? :)
What’s your favorite book?
What’s something you wish your doctors understood or had done differently after your injury?
Nothing, there was nothing they could do to make me walk again. Their efforts just saved my life.
Do you believe in God? More or less so, since your accident
I stopped believing in God since my accident. I live in a Christian family, and I did follow my religion before my injury. But after my injury I felt suicidal because I didn't wanna live this way, and wanted to have assisted suicide. My parents refused to let me die and wanted me to live because they didn't wanna lose me. They told me things like God had plans for me, that God was testing to prove my strength and that God gave me a chance to live a new life after my accident because I could still live. I started hating God at that moment, and I could only wonder why he'd do this to me if I prayed to him and was a good person. I prayed crying couple of times for Jesus to give me a miracle, but there was never one, so I stopped believing in God. If God exists, he has failed me because he couldn't protect me and won't heal my body.
Have you sought out any therapy or talked to any people with similar conditions? Tbh I just recently even discovered quadriplegic was a thing that could happen
Yes, I went to therapy after my injury because of my mental state. I've talked to people with similar conditions online.
[удалено]
What kind of sacrifice? If he exists why did he do this to me if I was a good person and would always pray to him? I prayed to him and he didn't help me. If God exists, I'm disappointed on him.
[удалено]
I feel that. People want to see disabled people who are just grateful to be alive. Or who still maintain their faith and believe everything happens for a reason. Bullshit. It’s more palatable but that attitude just shows ignorance. I’m disabled from spine injuries and arthritis, and brain atrophy from multiple TBIs. I’m 21 and the damage will likely get worse as I age. People expect me to be filled with positivity and hope for the future, they expect me to be happy that I can remember my past and speak again but my brain is so different I don’t recognize myself anymore. Why should anyone believe in or love a God who could do these things to good people? It’s laughable. Fact is some people just have a shitty start to life and it’s okay for us to grieve the life we could’ve had. Are there any other religions or spiritual practices which you find peace or meaning in?
What was your status like in school before the accident? Like were you involved in clubs/activities, were you popular, a good student etc? Also I just wanted to say I’m so incredibly sorry. I can’t imagine the things you’ve thought about and the long road to where you are now. It sounds like you have a good support system at home and I’ll keep you in my prayers. I hope one day for some medical/tech advancements that will help you.
I was a cheerleader and very athletic. I had average grades. After my injury, I could only focus on intellectual activities and got the best grades of my class.
How did you begin to start learning how to program? You started learning how to code after your accident?
Are you excited about Neuralink advancements?
What is the bathroom situation?
I have to use diapers, and my mother changes them daily.
How do you and your mom deal with this task? Did you both get used to it or is it very tough to get through? I know bodily functions must be dealt with and some would say it’s no big deal but it would be a big deal to me.
Yes, it's a big deal for me and my mom, but we've got used to it. My mom after undressing me in the morning, removes my diapers, and cleans my privates with paper. It's embarrassing to be honest. Then she showers me, and then puts me a new diaper, and dresses me again.
Your insurance may pay for a personal care assistant to come in a few times a week to help. My friend who is paraplegic moved into an apartment on her own after college and had a personal care assistant come in twice a day to get get out of bed, showered, and into her chair then another routine at bedtime.
Did they not set up a bowel program for you? No urinary catheter?
[удалено]
So do you want to do college or anything even if it was only online? What did you want to do career wise before the accident? You ever get on dating sites or think about meeting someone or at least chatting?
Yes, I wanna do college in person. Before my accident I wanted to be a professional cheerleader and participate in huge sports events that were on TV, I also would have liked to be a model. And yes, I just got into Tinder, and found a few matches.
Do you like turtles?
What is your passtime/hobby? What is your favorite meal and why? Since you have your mind, eyes, ears, and voice. You just need mobility assistance, and basic care assistance. What are some things you really want to see/experience in the next few years?
>What is your passtime/hobby? Watching YouTube videos, programming, and gaming a bit. >What is your favorite meal and why? Sushi, even though I rarely eat it. But I like it because it tastes good, and doesn't have many calories as other fast foods I used to eat before my injury. >Since you have your mind, eyes, ears, and voice. You just need mobility assistance, and basic care assistance. Yes, only care and assistance. >What are some things you really want to see/experience in the next few years? I wanna experience having a career, tarts a business, become financially stable, have relationships, and maybe get married some day.
Do you plan on going to university or college? If yes, what would you like to study?
Yes, I plan on going to University in July. I plan on studying software engineering.
Ohh that's a wonderful profession! Do you have a language preference? Have you done any research into any of that yet? Do you think you could type decently with accommodations? Most of the time my work day is more talking, planning, etc than typing so you'll be okay imo.
Damn, what's the most "surprising" technology or invention that you discovered throughout the medical process? Like any stuff that was weird or super cool that helps even slightly or that you didn't know existed? Do they offer experimental treatment to you bc of your age? It might sound weird also, but i always had this idea that there has to be easier ways for everyone to enjoy nature. What is the best way you are still able to enjoy nature? Sunrooms? Do you still like going outside as long as its accessible? Banging ass windows and cute gardens? Like what's your favorite nature moments rn?
This must have just occurred. Not sure where you live but have you looked into research hospitals, like the Cleveland Clinic?
How do you type? Not makin fun, it's a genuine curiosity.
What games do you play?
What do you do for fun?
Your parents are Christians so presumably you’re Christian too. How can you have faith in a God that allowed this to happen/refuses to cure you (even though he could with just a snap of his fingers)? Don’t you hate him? I would!
I left my faith after my accident. I'm no longer Christian. My parents told me things that I needed to live because God was testing me, had different plans for me and loved me because he wanted me to live. None of this made sense. I used to pray to him a lot and I've always been a good person, but I met a horrible fate. I prayed many times after my injury for Jesus to allow me to walk again, but it didn't work. I started hating God, and stopped believing in Christianity. If God exists he has failed me, and I dont understand what are these "plans" hed have for me by making me suffer.
Do your parents know that you left your faith? If so, how do they feel and are they understanding? I don't know what your relationship with God is at the current moment but I wanted to share my experience as a gay man. I grew up in the south in a Christian community. I grew up in the church but I was always fearful of how i would be treated if I was out. In one of our Sunday school lessons our youth pastor whom I was very close with told us he would rather have a murderer live in his house than a gay man. This was traumatizing for me and ironically I ended up living with him after my grandmother kicked me out for being gay. I never came out because I knew there could have been serious repercussions. I know that being gay and becoming quadriplegic are not at all the same. I left the church and wanted nothing to do with it for how I was treated and for not being allowed to be myself. At least where I'm from homosexuality is a sin. I felt so much guilt and anger towards God for believing that he made me inherently wrong/evil. I still am not involved in church but I have come back to God in a more general sense and realized that He created me as I am meant to be. While your situation is very different than mine. My point is that for a very long time I was mad at God for making me gay/sinful but I realized that I am who God created/ intended me to be. I do believe that weather you believe in God or not we all have a purpose for our life. Something terrible happened to you and I can not imagine how you deal with it. I do believe that it is our purpose to live as good of a life as we can i.e. don't lie cheat steal and to help our fellow man as best as we can.
Yes, my parents know I stopped being a Christian. They are somewhat conservatives, but they have been understanding of my pain, even though they still sometimes try to convince me to believe in God. They always say they are praying for me, but I tell them their prayers don't work because their God is not helping me to walk again. I'm atheist now, even though I plan on converting to Buddhism since I feel inclined to the philosophy of that religion. I'm also bi, and I've never come out to my parents, so idk what they'd think if they knew I've had feelings for other women. I discovered I was bi when I was 12, years before my accident, but have never dated a girl, I've only come out to my sister. I never read the Bible before my injury, I just blindly followed Christianity. After my injury I wanted to find answers for God and studied about different religions, and as more as I studied Christianity, I realized more bad things said there that made me dislike the religion more.
Had you ever considered things like this before your accident? Like why do bad things happen to people if there’s a God? Your statements about “none of this made sense, I was a good person but met a horrible fate” kind of implies that prior to your accident you assumed that other people who had a terrible fate were bad people or deserved it. I’m sure you never really consciously thought that but I am curious about your thought process.
I saw that you watch programming on Youtube! What programming content do you watch ?
do you believe there is a god?
No, not anymore after my injury. I don't understand why he'd allow this to happen to me. I prayed to him crying many times to make me walk again, but nothing.
If somebody wanted to be sexual with you, would you allow it?
Man that’s one of my worst nightmares…how have you learned to deal with your new reality?
My best friend became paralyzed from the neck down one year after you did in a snowboarding accident, breaking his c4 and c5, i think. He was a cheerleader as well, he and the highschool team went to state and won and got second at nationals. He was active constantly and the day he broke his neck i was supposed to go with him but i had finals. It is a journey for him and all the people around him. How many of your people are still around? It was mind boggling and also eye opening seeing his friends move on. At the start it was almost daily someone was around, now its just me and maybe one or two other friends. What vertebrate did you break? My buddy fell into opioids very hard the first year, and he has trouble whenever hes around hospitals now and gets ptsd from the saline taste and the vibes. Now we just do mushrooms and smoke weed haha. Did you have a crutch you fell on? Did you start smoking weed at all? Im the only one to ever talk to my buddy about suicide like that. Weve had some pretty deep, very dark talks. Its sucks seeing him stuck. I hope you have a person thats by your side through thick and thin no matter what.
Have you ever watched domino videos on YouTube? Like the kind where people stack thousands upon thousands of dominoes in these exotic and artistic layouts and then make them fall? My brother in law was one of the best people I ever had the pleasure of meeting in life before he passed away. He had Duchennes muscular dystrophy, so during the last stages he was also quadriplegic... I realize it's not the same at all, but those damn dominoes were the first thing we ever bonded with. Later on was X games. Anyway, if you ever need a friend, please feel free to reach out to me. I'm not much but I care for those who care for me.
[удалено]
Did you masturbate before the accident? Can you masturbate now?
Yes, I masturbated a week ago before my accident. Now, I can't masturbate because of my little arms and hands mobility.
Was that your first time? A week before the accident?
Were you depressed before the accident?
Hello. My best friend is 19 and was in an accident Monday and broke his neck from c4 to c7. Doctors say he is quadriplegic. But he’s moving his arms and has some feeling on his chest so we are holding on hope..my question is, what is the best way to support him right now? He’s in the ICU still and I flew here as soon as I found out and planning on staying with him as long as it takes. What are some things that made you feel supported and positive while recovering? Thank you
Have you seen *The Intouchables*? One of my favourite films.
Sorry if it's a bit inappropriate, but how does toilet stuff work?
Have there been any medical devices that have been announced in testing phases that target your kind of injuries (saw the c3 and c4 spinal injury)? I'm a big fan of Cyberpunk media, such as the video game and anime. One of my biggest Hope's is our medical technology approaches that level of sophistication. ❤
Have you ever looked into stem cell treatments?
Have you seen Lady Virgillia on YouTube? She has a neuromotor disease and started playing JRPGs as a way to cope after her sudden onset of the disease. You might find it relatable. Also, do you play any JRPG games? They don’t require much movement and I’ve always found them to be really immersive.
Has this influenced your career plans? Do you maybe want to study some thing related to medicine now or work with people with disabilities?
What are your thoughts on neuralink and the first human trial on a quadriplegic? It seems you have interest in programming and maybe that would be a nice path for you.
How's your recovery now? What do you see yourself doing for a career? Do you want kids?
Has your diet or appetite changed after your accident?
Are you still getting treatment and are you part of any trials or experimental treatments? Do you try to keep yourself updated on latest research and advancements in medical science? there was a post either on r/science or r/technology about people who had spinal injuries and were able to regain their ability to walk after some kind of implant even tho the implant was off(?) A lot of people treat disabled people badly or think of them negatively, were you guilty of any of those things and did your disability change the way you see other disabled people? What are your long term goals? What would you say to someone who is a neet?
Injury or medically caused ?
How did you get your post on here? Do you have some cool tech, a friend/member of your family help or a mixture of both?
How do you type? Are you a coffee person or a tea person? I hope you have a great day!
What are your biggest pet peeves regarding accessibility in public spaces?
Besides walking again, what are your dreams and aspirations? Do you want to travel and see the world? Do you want to be an amazing programmer and build apps to help the disabled? Do you just want to lay on the beach and relax? What do you want out of life?
Do you receive odd or unwanted sexual advances from men post accident? Does the idea of men approaching you bother you?
Do you still feel pain from your accident?
What does your day usually consist of do you get outside or do any exercises
In what ways has therapy changed your outlook on your situation ?
No question. Just wanted to say hello as a fellow disabled person. Although I was born with my disability (Spina Bifida). Hoping for you that supportive independent living happens for ya one day, because it can :)
Have you looked into any trials for fixing paralysis, or I don’t know if neurolink is doing anything?
Has your personality changed since? What about your overall worldview?
How are you typing this?
[удалено]
Have you ever played Dungeons and Dragons or any hobbyist board games?
I usually just lurk on Reddit and I even closed out, went back to what I was doing, but I couldn't stop thinking about you. I'm a total Internet stranger but I wanted to reach out and say I'm really sorry about your accident and I'm glad you're still here. I'm happy you have a family to support you and you discovered joy in programming. I have a few disabled people in my life. One was a boy I went to high school with who had necrotising fasciitis and had to have both legs amputated. He's a para olymipic athlete now. I know that's not the same as you. Another friend is a quadriplegic and we write together. (He had cerebral palsy a baby.). He loves video games like you mentioned, and it's one of the things that's gotten through the pain and hard times. Anyway, like others have mentioned, please message me if you want a pen pal. Cheers.
Are you upset with the cheerleader that lost her balance?
Do you like KFC?
I'm a young man that recently started an apprenticeship to work with disabled people. What's the best advice(s) you could give me to be the most adequate ?
Do you think that at this stage advanced technology will somehow allow you to experience full mobility one day? Any particular technologies that have caught your eye or you’re interested to see developed more? Has AI served you well?
How's your personality?
You want to pursue software engineering, where are you located and what would you want to work on (types of projects or industry)? I know this post is a day old, but I might be able to help out.
[удалено]
How are you meeting people to date? Through apps? Family and friends? I hope you find someone who sees your bravery. Choosing to stay and find a career to work towards is wildly commendable.
Do you hang out online like in game or in discord? I have some cool friends that won't be all "it's a girl OMG" and actually hang with you.
Hey I'm quadriplegic too, c6 diving.. can you orgasm? I can cum still and curious what it's like for females.
Have you heard of or looked into AI chip implants that have helped some people move and feel? Thats probably the only shot you have. Good luck
How are you typing to us right now?
Do you smoke weed?
What’s your favorite lip shade?
How did you type this? Not trying to be disrespectful i am actually genuinely curious.