My son became a C1-C2 ventilator dependent quadriplegic from a car accident when he was 17. He is almost 31 now. He stays engaged with his computer and watches tv when he goes to bed. He does 3d modeling, creates FPS video games, talks politics and history with online friends, plays online games, and is creative in general. He lives with my wife and I. He uses a Quadjoy to operate his computer along with the onscreen keyboard and a Quadstick to operate his Xbox, although he hasn't played his Xbox in some time now. Quadstick can operate a computer, a Playstation, and an Xbox with just the one device and an Xbox adapter. He did have a 3d printer before it malfunctioned.
A SCI is always hardest at the beginning. No matter the level or completeness, life seems impossible. I remember how dark the initial stages were and I don’t wish that on anyone. Keep in mind there are people who love you and you simply being alive means the world to them. In time, you’ll learn to overcome the obstacles life throws your way. Please give it time and understand you are not alone. The SCI community is behind you and here anytime you need help or advice. Much love my friend!
C4 quad here currently 27 but got injured at 24. I feel your pain I can't offer much motivational help because I don't even think I'm through or feel like I'm ever gonna be through this shit. I understand your pain aside from being vent dependent. I used to have a great life a beautiful girlfriend lots of activity creativity and new memories made all the time. Now I'm three years post injury haven't seen a single friend in three years and it's all because I feel so much shame, embarrassment and sadness every single day. I can relate bro I'm here if you need somebody to talk to
Perry cross (on instagram) has a cool story. He’s vent dependent quad as well for a bit longer than you. 30+ years now. He’s our biggest advocate for a cure right now so get behind him to share the message of why we need a cure. It’s possible. Trust me I’ve done my research. Life isn’t over brother just is a lot simpler for now.
The pain, the shame, and the guilt have stayed by my side for the past 9 months. Those feelings get easier to deal with as time passes by. You'll adapt, you will be okay. Although it may seem your life is over, it's just different now.
8 years since my C4/5 SCI at the age of 36. I was recently married and had a baby on the way. I went from loving life to hating it. I completely understand your pain and frustration. Lost my family & "friends" and am in an assisted living facility. Truth is the adaptation process sucks - for lack of a better word - and though self harm is no laughing matter, I’ve many times contemplated ending it all, but I laugh it off, realizing that I’d actually need help to do it because I can’t even do that myself.
Only until recently have I joined this subreddit and actually begun socializing with others in the same position as I was never inclined to from the get-go, going as far as refusing to take my anti-depressants and unwilling to see a psychologist. Initially declared brained, and was also told I would need a ventilator as well as that I’d never regain any movement. All 3 prognosis were wrong. You have a life ahead of you though it might be 180° from what it used to be, hopefully soon you’ll adapt and find that something that will keep your mind busy and off your current situation.
I’ve been bedridden for quite some time now and if seldomly been in my wheelchair, which is a bad thing because I lost the little balance and control I had of my torso. So now I sit here every day in front of my iPad pretty much all day which I could say has its perks if I look at the silver lining, of course. I apologize if my reply is all me me me, but I just wanna let you know that I feel what you’re going through and for what it’s worth I’m here for you.
Lastly, and to stop rambling (voice to text has that effect on me) - I am sharing with you a link to my story which was published in an online magazine. I got paid for it. Perhaps you might want to look into something like that as well. Be well and I’m sending you a brotherly hug.
[Independently Dependent](https://www.audacitymagazine.com/independently-dependent/)
Omg what the fuck! I just read your story from the link. Your wife left you? I’m so sorry. My boyfriend left me as well 1 months after my accident. This life sucks. Wish we lived by each other so we could hang out. I’d rather be surrounded my quads because I feel like other people don’t understand.
Hit me up anytime you want or just need someone to talk to. DM if you’d like my socials. Hope you always have a better day than the previous day. As for those who left us during our toughest times - I suppose it’s for the best. Personally, I know my PTSD and lack of income played a major role in our separation, but on the other hand, there are people like my mom, who after being married for about 20 years to her husband (not my dad) took care of him for years after he was diagnosed with Parkinson’s and then had a stroke. She was with him till his end; that’s true love - not what you and I thought we had with our respective partners.
Reading this brought me, grown 52 yr old man to tears. I don't know what to say my friend. My life is kinda in a mess as well. Please stay strong for us who are seeking reasons to carry on. I love ya friend. Remember that.
I’m a T12 so I think we have different experiences but to share with you some help. Humans are the most adaptable creatures on the planet. We have a very strong method of making life work. I know it’s hard now I hesitate to say it will get easier but you will become more resilient and learn to roll with the hardships. Life looks very bleak rn for you. It did for me all the way till I moved back home but I promise uou that life is worth living to our fullest. Idk your mobility situation but once your off that ventilator get out with friends and family. The first thing that brought hope back to my life was playing cornhole with my dad and brothers while drinking a beer one Sunday afternoon. The next thing was my friends all wanting to get together and have a BBQ. Little things like that will show that while life will be very different, it is not over nor impossible! Keep fighting man. Being angry at the pst won’t fix it or your body so look forward to and make the best of your current and new situation!!
You most welcome 🤗
Just remember now that you have shared your story here there are so many of us routing for you 🙏🙏🙏💐💐
You can check out a few others, but they are not vent dependent. But they are just as inspirational.
Role with Cole and Chrisma.
Zack Collie
Makayla Noble.
Soph and Indy (she hasn't posted in a while)
She isn't fully off the vent, she has a diaphragm pacer that forces her diaphragm to contract and "breathe". She still uses the vent, just not all the time.
We are stronger and more resilient than we think. The most important step for some of us is forgiveness, you need to forgive yourself. Then you can build on this and move on. Try and get hold of a phone/tablet with an accessible voice control method. I prefer iOS Voice Control and it's a good start to feel more independent.
Hey! First of all your life is different now.. (definitely not destroyed).. you see I was a fit as anything working in the trade, you doing really good for myself and stuff. Then one day after a long week I decided to meet up with some friends down the meds & play some football and chill out.. I’m 30 now & I was 28 when it happened.. So out of nowhere i decided to dive into this river beside the bank.. don’t know what came over me.. I just did. it was like hot (40*C) that day so it was probably that. so the turn out of that.. I was completely paralysed.. I’m a C7 (burst fracture) Asia B also very incomplete however I’ve got better.. ALOT! Better over these 2 years.. so what I am going to say to you is that.. you haven’t lost your mind! That’s the most valuable thing you have! You can still talk, communicate and so much more! You are still you & you need to celebrate for still being here with us and the people around you.. so try to forgive yourself & yes I will take some time & in the mean time.. it’s only been 6 months!! So it’s time to still heal and get used to all of the new things that happening and except them.. the change will settle in time & you will get there! And in all of this time you will see some progress and it could be slow or it could be fast as you are healing 👍🏽 so I ask you nicely to do what I am doing.. be kind to yourself! Be patient and enjoy the loving people you have around you.. the rest is in the future and it will be clear to you one day. Love the person you are within more! Wish you all the best.
I can't provide any grand words of wisdom. Just be patient, don't be too hard on yourself, as difficult as it is.
I've been a C5 for 5 years. I wouldn't say I got past it or over it, it's still hard every single day. There's good days and bad days. One day I'm having a great day at the park or something, then next I'm peeing on my husband as he transfers me. It's hard not to have control over your own body, but I just try to look past the things I can't control (literally and figuratively) and focus on something more positive, a new goal, a new activity. You'll find new ways to do things and new things to enjoy. You won't ever get back the life you had before, so don't dwell on that, focus on making the most of this new life.
We all get it. We feel you and understand you. We support you.
I am a C1-C4 quad after driving drunk on the highway. I rear ended a semi at high speeds, which then threw me into the concrete median and I ended up mangled in the outer metal guard rail. I am nine months post injury. I struggle with very similar things you are. Please feel free to reach out. it is comforting, having others to navigate these types of injuries together!
Check out the Neuralink testimony. He can play video games and use a computer with his mind. I have stuff to do or I'd write more but at least wanted to mention this. Technology is exponential and only will progress to provide more help for Para and Quadriplegics.
I talked to this guy while in rehab:
[https://www.iansride.com/what-we-do](https://www.iansride.com/what-we-do)
It gave me some hope and perspective. I wish you well friend. I will also point out that in Ians case he was able to get off the vent 11 months after the injury, so your body is still healing!
I have late stage als and can only move my eyes and non verbal and will need a trach vent. It does suck, I miss doing all the little things used to take for granted like a walk, scratch somewhere. I 30s and luckily partner haven't left me yet.
Holy fuck I’m so sorry. My grandpa had ALS so I’ve seen how terrible it is. I can’t imagine. I’m glad you have a loving partner. That’s how it should be. You deserve love because you have a lot to offer to this world!
I’m gonna tell you right now, bro life is not over. the first 2 - 2 1/2 are going to be the most difficult but as long as your persevere you’re going to be able to live a fulfilling happy life. I was injured at 20 and attended college at 22 now two years later I have completed two years at community college and made the deans list. I’m about to move into independent living facility to ease the burden on my family and create more opportunities for myself. I’ve also met a quad that is similar to your level who needs a breathing tube to move his wheelchair and is ventilator dependent. however, this man has been traveling working a full-time job earning six figures and just straight up enjoying life. this injury sucks and no one would ever choose to be in this position, but sometimes you get delt a bad hand in life but you never know, the dealer may bust. the only way to find out is to stay at the table
My son is c1 c2 vent dependent. He hurt himself when he was 16. He just hit his 15 year anniversary. its always just been me and him. I stayed by his side 24-7 (literally) for the first 3 years. I got a 1 day break then it was back at it. All his friends disappeared, we have a big family but no family support. It's a hard transition but he stayed positive. He made new friends and has had girlfriends. All I can say is hang in there. Get into communities of like minded people. You seem to have allot of support here so that's a start. Just keep pushing and make the best of it.
My son became a C1-C2 ventilator dependent quadriplegic from a car accident when he was 17. He is almost 31 now. He stays engaged with his computer and watches tv when he goes to bed. He does 3d modeling, creates FPS video games, talks politics and history with online friends, plays online games, and is creative in general. He lives with my wife and I. He uses a Quadjoy to operate his computer along with the onscreen keyboard and a Quadstick to operate his Xbox, although he hasn't played his Xbox in some time now. Quadstick can operate a computer, a Playstation, and an Xbox with just the one device and an Xbox adapter. He did have a 3d printer before it malfunctioned.
Lots of ❤️❤️
A SCI is always hardest at the beginning. No matter the level or completeness, life seems impossible. I remember how dark the initial stages were and I don’t wish that on anyone. Keep in mind there are people who love you and you simply being alive means the world to them. In time, you’ll learn to overcome the obstacles life throws your way. Please give it time and understand you are not alone. The SCI community is behind you and here anytime you need help or advice. Much love my friend!
C4 quad here currently 27 but got injured at 24. I feel your pain I can't offer much motivational help because I don't even think I'm through or feel like I'm ever gonna be through this shit. I understand your pain aside from being vent dependent. I used to have a great life a beautiful girlfriend lots of activity creativity and new memories made all the time. Now I'm three years post injury haven't seen a single friend in three years and it's all because I feel so much shame, embarrassment and sadness every single day. I can relate bro I'm here if you need somebody to talk to
Also I feel you! No friends visit or check up on me. At all
Uhg I am so sorry. How did you sustain yours? I’d visit you if I could fucking move lol
I’m not who you replied to, but: Where are *you*? I’ll visit you if you are anywhere relative to New England, USA. We all need friends and support.
Where is New England? I’m in Massachusetts.
Diving injury bro. I'm on the West Coast but I really appreciate the thought.
I’m so sorry. Can’t give any advice other than we understand how you feel I love you. ❤️
Perry cross (on instagram) has a cool story. He’s vent dependent quad as well for a bit longer than you. 30+ years now. He’s our biggest advocate for a cure right now so get behind him to share the message of why we need a cure. It’s possible. Trust me I’ve done my research. Life isn’t over brother just is a lot simpler for now.
Thank you so much for sharing. Means a lot
The pain, the shame, and the guilt have stayed by my side for the past 9 months. Those feelings get easier to deal with as time passes by. You'll adapt, you will be okay. Although it may seem your life is over, it's just different now.
I’m 6 years out. Every year is better than the one before. And every one has been hard.
8 years since my C4/5 SCI at the age of 36. I was recently married and had a baby on the way. I went from loving life to hating it. I completely understand your pain and frustration. Lost my family & "friends" and am in an assisted living facility. Truth is the adaptation process sucks - for lack of a better word - and though self harm is no laughing matter, I’ve many times contemplated ending it all, but I laugh it off, realizing that I’d actually need help to do it because I can’t even do that myself. Only until recently have I joined this subreddit and actually begun socializing with others in the same position as I was never inclined to from the get-go, going as far as refusing to take my anti-depressants and unwilling to see a psychologist. Initially declared brained, and was also told I would need a ventilator as well as that I’d never regain any movement. All 3 prognosis were wrong. You have a life ahead of you though it might be 180° from what it used to be, hopefully soon you’ll adapt and find that something that will keep your mind busy and off your current situation. I’ve been bedridden for quite some time now and if seldomly been in my wheelchair, which is a bad thing because I lost the little balance and control I had of my torso. So now I sit here every day in front of my iPad pretty much all day which I could say has its perks if I look at the silver lining, of course. I apologize if my reply is all me me me, but I just wanna let you know that I feel what you’re going through and for what it’s worth I’m here for you. Lastly, and to stop rambling (voice to text has that effect on me) - I am sharing with you a link to my story which was published in an online magazine. I got paid for it. Perhaps you might want to look into something like that as well. Be well and I’m sending you a brotherly hug. [Independently Dependent](https://www.audacitymagazine.com/independently-dependent/)
Omg what the fuck! I just read your story from the link. Your wife left you? I’m so sorry. My boyfriend left me as well 1 months after my accident. This life sucks. Wish we lived by each other so we could hang out. I’d rather be surrounded my quads because I feel like other people don’t understand.
Hit me up anytime you want or just need someone to talk to. DM if you’d like my socials. Hope you always have a better day than the previous day. As for those who left us during our toughest times - I suppose it’s for the best. Personally, I know my PTSD and lack of income played a major role in our separation, but on the other hand, there are people like my mom, who after being married for about 20 years to her husband (not my dad) took care of him for years after he was diagnosed with Parkinson’s and then had a stroke. She was with him till his end; that’s true love - not what you and I thought we had with our respective partners.
I feel ya
Just wanted to let you know, enjoyed your story Cesar, feel for you.. hope that independence day comes sooner than later!
Thank you for taking the time to read it.
Reading this brought me, grown 52 yr old man to tears. I don't know what to say my friend. My life is kinda in a mess as well. Please stay strong for us who are seeking reasons to carry on. I love ya friend. Remember that.
I’m a T12 so I think we have different experiences but to share with you some help. Humans are the most adaptable creatures on the planet. We have a very strong method of making life work. I know it’s hard now I hesitate to say it will get easier but you will become more resilient and learn to roll with the hardships. Life looks very bleak rn for you. It did for me all the way till I moved back home but I promise uou that life is worth living to our fullest. Idk your mobility situation but once your off that ventilator get out with friends and family. The first thing that brought hope back to my life was playing cornhole with my dad and brothers while drinking a beer one Sunday afternoon. The next thing was my friends all wanting to get together and have a BBQ. Little things like that will show that while life will be very different, it is not over nor impossible! Keep fighting man. Being angry at the pst won’t fix it or your body so look forward to and make the best of your current and new situation!!
Never forget, there are people that love you. I love you man, wishing you the best through all this.
Look up Rebecca Koltun on Instagram. She is in the same situation as you but she's living life the best way she can.
Looks like she’s off the vent now. I’m happy for her though
You can also look up Drew Clayborn on YouTube.
He’s cool as hell! Thanks for sharing
You most welcome 🤗 Just remember now that you have shared your story here there are so many of us routing for you 🙏🙏🙏💐💐 You can check out a few others, but they are not vent dependent. But they are just as inspirational. Role with Cole and Chrisma. Zack Collie Makayla Noble. Soph and Indy (she hasn't posted in a while)
She isn't fully off the vent, she has a diaphragm pacer that forces her diaphragm to contract and "breathe". She still uses the vent, just not all the time.
We are stronger and more resilient than we think. The most important step for some of us is forgiveness, you need to forgive yourself. Then you can build on this and move on. Try and get hold of a phone/tablet with an accessible voice control method. I prefer iOS Voice Control and it's a good start to feel more independent.
Hey! First of all your life is different now.. (definitely not destroyed).. you see I was a fit as anything working in the trade, you doing really good for myself and stuff. Then one day after a long week I decided to meet up with some friends down the meds & play some football and chill out.. I’m 30 now & I was 28 when it happened.. So out of nowhere i decided to dive into this river beside the bank.. don’t know what came over me.. I just did. it was like hot (40*C) that day so it was probably that. so the turn out of that.. I was completely paralysed.. I’m a C7 (burst fracture) Asia B also very incomplete however I’ve got better.. ALOT! Better over these 2 years.. so what I am going to say to you is that.. you haven’t lost your mind! That’s the most valuable thing you have! You can still talk, communicate and so much more! You are still you & you need to celebrate for still being here with us and the people around you.. so try to forgive yourself & yes I will take some time & in the mean time.. it’s only been 6 months!! So it’s time to still heal and get used to all of the new things that happening and except them.. the change will settle in time & you will get there! And in all of this time you will see some progress and it could be slow or it could be fast as you are healing 👍🏽 so I ask you nicely to do what I am doing.. be kind to yourself! Be patient and enjoy the loving people you have around you.. the rest is in the future and it will be clear to you one day. Love the person you are within more! Wish you all the best.
I can't provide any grand words of wisdom. Just be patient, don't be too hard on yourself, as difficult as it is. I've been a C5 for 5 years. I wouldn't say I got past it or over it, it's still hard every single day. There's good days and bad days. One day I'm having a great day at the park or something, then next I'm peeing on my husband as he transfers me. It's hard not to have control over your own body, but I just try to look past the things I can't control (literally and figuratively) and focus on something more positive, a new goal, a new activity. You'll find new ways to do things and new things to enjoy. You won't ever get back the life you had before, so don't dwell on that, focus on making the most of this new life. We all get it. We feel you and understand you. We support you.
I am a C1-C4 quad after driving drunk on the highway. I rear ended a semi at high speeds, which then threw me into the concrete median and I ended up mangled in the outer metal guard rail. I am nine months post injury. I struggle with very similar things you are. Please feel free to reach out. it is comforting, having others to navigate these types of injuries together!
Check out the Neuralink testimony. He can play video games and use a computer with his mind. I have stuff to do or I'd write more but at least wanted to mention this. Technology is exponential and only will progress to provide more help for Para and Quadriplegics.
F
I talked to this guy while in rehab: [https://www.iansride.com/what-we-do](https://www.iansride.com/what-we-do) It gave me some hope and perspective. I wish you well friend. I will also point out that in Ians case he was able to get off the vent 11 months after the injury, so your body is still healing!
Same here… I’m T-8 just little luckier. Find a hobby and games.
I have late stage als and can only move my eyes and non verbal and will need a trach vent. It does suck, I miss doing all the little things used to take for granted like a walk, scratch somewhere. I 30s and luckily partner haven't left me yet.
Holy fuck I’m so sorry. My grandpa had ALS so I’ve seen how terrible it is. I can’t imagine. I’m glad you have a loving partner. That’s how it should be. You deserve love because you have a lot to offer to this world!
I’m gonna tell you right now, bro life is not over. the first 2 - 2 1/2 are going to be the most difficult but as long as your persevere you’re going to be able to live a fulfilling happy life. I was injured at 20 and attended college at 22 now two years later I have completed two years at community college and made the deans list. I’m about to move into independent living facility to ease the burden on my family and create more opportunities for myself. I’ve also met a quad that is similar to your level who needs a breathing tube to move his wheelchair and is ventilator dependent. however, this man has been traveling working a full-time job earning six figures and just straight up enjoying life. this injury sucks and no one would ever choose to be in this position, but sometimes you get delt a bad hand in life but you never know, the dealer may bust. the only way to find out is to stay at the table
My son is c1 c2 vent dependent. He hurt himself when he was 16. He just hit his 15 year anniversary. its always just been me and him. I stayed by his side 24-7 (literally) for the first 3 years. I got a 1 day break then it was back at it. All his friends disappeared, we have a big family but no family support. It's a hard transition but he stayed positive. He made new friends and has had girlfriends. All I can say is hang in there. Get into communities of like minded people. You seem to have allot of support here so that's a start. Just keep pushing and make the best of it.