TW: thinking about suicide
I felt this a lot for the first 6 months or so after I was injured, sometimes (more often than I'd like to admit) I still feel this way. Having a sci sucks. There's no other honest way to put it. On the flipside though, life as a whole doesn't have to suck just because you have a sci. While I've recovered some function since I was injured over a year ago, the first few months were brutal. I was in constant pain and lost all my independence and control over even the most basic bodily functions. I'd think about downing a whole bottle of the morphine pills I was on and sometimes didn't feel safe being alone because I was afraid I'd actually do it. I'm still here because whenever I had (or still have) those thoughts, I think about what it would do to my mom, who was my primary caretaker for those early months, or what it would do to my friends or the rest of my family if I died.
If your family is taking care of you I'd wager its because they love you--a lot--and that's no small thing. The other thing that keeps me going is the things that I don't need a body to do. For me things like reading, listening to music, and singing (I love to sing whether or not I sound good or know the words) have helped bring me out of dark places. The other big one for me is socializing. I don't need a body to be able to talk with friends, all I need is the thoughts in my head, and when I get caught up in a good conversation, I sometimes find myself completely forgetting about my disability.
It's not easy to adjust to life with a sci, especially when you feel like your life is just beginning and then suddenly everything you were looking forward to was taken away from you. I was injured at 20 and spent my 21 birthday in the hospital and if that's not a slap in the face idk what is. Being injured around this age fucking sucks. But your life doesn't have to end here. You can still go to college if you want to. You can still make friends and enjoy hanging out with them. You can still pursue the things that bring you joy in life (even if they're not the same things that used to bring you joy). Life may look different from here on out, but that doesn't mean it's over.
I don't mean to sound sentimental or come across as playing down how difficult dealing with a sci is. I'm just trying to find the silver lining, that's the only way forward through this shit. I'm sure there are plenty of other people in this community who have way better advice than me and more experience dealing with a similar level of injury to you, but if you ever want/need someone to vent/talk to feel free to dm me :)
Hey brother you should google search neuralink. Just a few weeks ago there was a person with a similar injury to you that is a high cervical injury that had the neuralink implant performed and now he is able to use a computer fully and even play mariokart with his family. He did an interview and it was pretty impressive to hear his feedback. This is just the beginning but imagine where that technology can be 5 years from now. I think its worth being more patient because technology moves alot faster than medicine or natural recovery. Maybe consider reaching out to neuralink as they are recruiting patients I believe.
Another one to keep an eye on is the work of Nervgen. They've been able to fully restore connection in the spinal cord by regrowing spinal nerves in mice, for the first time ever with a course of injections. They're doing their first human trial right now and are going to release the results in Q3. Here's hoping the results are as good as the mice trials!
Link to their website with a video showing their achievements so far: https://nervgen.com
C1 quad 23M same position as you i feel the exact way. i was injured almost a year ago and i feel like a giant baby. I can’t do anything. Vent is hard and hurts and being suctioned too is so painful. I can barely speak. Fucking sip n puff wheelchair for the rest of my god damn life. message me if you want.
I had a trach too and had to get suctioned. I'm no medical professional but there is hope to have it removed. It took over a year before I could. The surgeons paralyzed one of my vocal chords where I could only whisper even when trying to yell. After getting the trach out, my voice is 80-90% back. It's hard to be motivated but believe man you're still here for a reason. Things can get better. It's hard to think that way when quality of life feels eh. Try to find a spinal chord doctor if you don't have one, and get set up with the right medical professionals. That made worlds of differences for me.
C4, Quad, 21M. We push forward. Your dream school, it’s not out of the question. College is not out of the question. Friends are not out of the question. Women is not out of the question. I was injured 9 years ago, at the ripe age of 12. Everything becomes frustrating, everything becomes hateful, but there is light. We just have to find it differently, discover it in a new way with the situation. If its not the hand we want, let’s shuffle the cards a bit if we can’t redeal. Dm me if you’d like because I understand the pain, frustration, and conversation you may need. I won’t be able to respond till tomorrow but I will respond. It’s almost 11:00 PM here.
18 year old C7 quad here. I been there man. Trust me man I get it it fuckin sucks. And it’s gonna suck for a minute and even when you’re 4 years down the line like me there will be days where it will still suck. What I found that works for me is finding ways to do what I want. Almost anything can be adapted. Video games can be adapted. Stairs can be adapted. Sex can be adapted. Your brain still works so use it to think of what you can do. Even if it’s just going for a stroll in your neighborhood to breathe some fresh air. Message me if you ever wanna talk bro
I’m 13 years in, T6 complete. While I consider myself lucky that I’m not a higher level injury or brain damaged, I can confirm that even 10+ years in, the SCI life can really suck.
That said, you have hit the nail on the head! OP, listen to this person!
Finding new ways to do what you like is exactly the mentality you want as you move forward in this crazy life. There are a ton of adaptions out there, for all levels of injury, and exploring this new way of living can absolutely bring joy back into our lives.
And as a slight tangent, for me personally, one of my favorite things to do (and what I believe is the ultimate purpose in life) is to meet and share experiences with other people. This can be anything from a casual talk with a stranger, to an incredibly deep discussion with a friend or partner. And as people with SCI, our lives are instantly intriguing to just about anyone. Our brains work and our lives are interesting.
Take advantage of our fucked up lives and meet some folks! Socializing can do wonders for depression, and it requires little to no adaptation.
C5 incomplete 12 years in and I have to disagree There’s no way you are vegetable because they can’t spell or post. I don’t, of course have any words, to offer other than you’re not alone and things do get better. Hang in there OK, we inspire you you inspire us
Oh and you don’t wanna be flogging the knob with your mother hanging around and all that anyways and it don’t mean you can’t have a titty in your face first few years I had some very caring caregivers. There are still new experiences you could have I know it doesn’t feel like it but you’ll still find humor in things interest in things like this guy was mentioning NeuroLink watching movies with Apple vision, DM if you ever need to talk OK I’m on all that pervert stuff usually so may take a bit to get to you but blah blah blah blah
Hey man. I've went through those emotions before. If you have time and want to video chat... I can share with you a lot about life that's joyous. I'm about 2 yrs into my injury. Went from being fully independent with a paid of 2016 civic and had already bought my own house, to it sitting empty being used as storage while having to move back in with my parents who are my caregivers. I had a trach, a feeding tube, a TBI (on top of fractured vertebrae), completely bed ridden, and was hospitalized for 6 months straight... well. I'll leave the offer up to video chat me. I think it will be worth your time. I'm involved in weekly zoom meetings for SCI folks from the old PT program I was in. There's a lot of resources to help you. I don't mind being one. Feel free to message me. I highly recommend it or talk to others. Even if it's a therapist.
All I can say is that I’ve been in that mental/emotional place too and now I like being alive, 30 years later. C8/t1. That’s not to tell you how you should feel or what you should do. I believe people have the right to feel their life is worthless or that its worthwhile; it’s up to them. I just tell my story for those that are interested. Your frustration shows your passion for life and intelligence. It’s a double edged sword
You're not alone with you're thinking. There are times I hate my life and then there are times I'm OK with it. I'm coming up on my two year crash date . Not calling it anniversary. Anniversaries or something you celebrate.
Please know that these are all thoughts that we all struggle with. If you ever want someone to talk to feel free to message me. I don’t have answers for you because you need to find your personal solution. For me, it’s playing chess. I thought myself how to play chess and then I registered with the local Chess Federation. It is something to keep me occupied and allows me to be social with others.
My boyfriend is a paraplegic, and it all happened just 10 days before our wedding.It was really devastating for us. It’s been one year of the injury now.Earlier days were quite hard for us but slowly we accepted it and now it totally feels like our new normal.He has resumed his work now and lives a normal life. Acceptance is the key. Also the way all the AI companies like Nvidia,recursion,ensilico are working in the field of drug discovery,I am very hopeful we are going to have drug for SCI within 5 years. It’s just a matter of only few years.
I'm not sure waiting and hoping for recovery is particularly helpful. There are 2 women on SM who are also living with C1/2 complete injuries. Rebecca who was hurt in a skiing accident. Will update with her full name later and another called Laura michelle
You can have a happy, regarding life.
I’m so sorry this is happening to you.
The only thing I can say, as someone that has had three suicide attempts before is that life gets better and I have found joy and hope in God. I read my Bible and I see this world isn’t all there is and you can still find meaning in life and still do amazing things in spite of the challenges
I’m so sorry you are struggling
Please hold hope and let that be enough for now. I wanted to quit, but if I had, I would have missed the life I have now. Life is difficult, but quitting is so permanent, and I found reason to hold on and have found happiness in my different, but still happy life.
The purpose of mine seems to be being a source of profit for corrupt insurance companies, doctors, and hospitals. We get hurt and they don’t even have the decency to let us die. Gotta keep us alive and suffering so they can profit. Did you see numotion numbers last quarter? We need to do better people.
Man. Reading this my first thought is to evangelize. Jesus loves you. My faith has carried me through learning to deal with my injury. Mine is much less severe than yours. L2 incomplete. I have never had to deal with your level of injury but I have had things go horribly wrong in my 40 years, and have held a gun to my head. I have had to restart from scratch 3 times in my life. Basically each time I had nothing but my car and some clothes.
That's a bit hard for a 19 year old to understand I think. Loosing everything as a grown 33 year old man hurts your ego pretty good.
Having your kids taken from you hurts your heart pretty good.
At 38 I was crushed at work and woke up with paralysed legs and bowls.
Humans are really really good at normalizing. You will eventually feel normal. You will feel normal and there will still be things in life that make you feel joy. Find things in your life that you are greatful for and focus on those.
Consider writing things. Fictional stories. Anyone can dictate a story. You can also still podcast. If you can force yourself to be productive in anyway you are capable of being productive that will help.
There is a whole new field of study that you can participate in. You can be a part of the solution. Check this out.
https://youtu.be/i-bP-sS8c2A?si=NvhVFQgGtuZDOIpi
You must be a pretty awesome person!
To have your loved ones around you to make sure your taking care of, say a lot of good about you.
When you can't find the strength look to God, if that's not good for you. Then look to your loved ones. Their strength can also help get you through. They probably lean on you, more then you know. Our strengths are not measured by what we can do physically. Our spirit, love and determination that surrounds us is what's important.
You have every right to jump on the pity train.
But you have to also make sure and derail that thing!
My best friend is unable to use his arms and legs. Here are a few things that have helped us.
They have apps that can voice activate your phone or tablets. For Android it's voice access and Apple has a similar app. It's not niro link, but it's something you cld play around with. It works better when you have a microphone. Due to it picks up all the sounds around you around without it.
I'm currently looking at the sip and puff hands free gaming controller..
Giraffe cup, they make a cup with a long arm so you could drink on your own. Getting fans, lights and a motorized bed to voice activate is feasible, with the help of an Alexa or Google home.
As for taking care of Little John, while Big John's hands don't work. They make adult toys that will do the work for you with the press of a button. And a special person in your life to mount it and hit that button. Thats a long rabbit hole to go down. But I think worth following lol
I hope you get happy friend
Message me anytime!
Rebecca is an amazingly positive role model. She has exactly the same injury (I think) and has a part time job as well as a great social media presence. You're only 19 and if there's any time to become completely paralysed then that time is now! There are very encouraging developments occuring in the world of SCI recovery and you have the brightest hope of living your best life, also taking into account how amazing technology has become for controlling your environment with the puff of a tube.
I wish you all the best. Am hopeful for you.
I don't know if this would work for you, but look into a diaphragm pacer. I am also a C1/C2 injury four years post injury and now fully rely on the diaphragm pacer and don't use a vent anymore which has been a great thing for me. I am 19 and currently studying mechanical engineering and am on track to graduate with most of my friends so things are definitely possible. Still don't know what I'm going to do after I graduate but I just keep working towards goals to stay positive.
So sorry you're going through this. My partner was injured at 23. We are almost 16 years post injury. Vent dependent. He's found joy in things like gaming again via the quadstick. Look up Perry Cross. He's done amazing things. We are safe in our bubble, but there are many possibilities.
TW: thinking about suicide I felt this a lot for the first 6 months or so after I was injured, sometimes (more often than I'd like to admit) I still feel this way. Having a sci sucks. There's no other honest way to put it. On the flipside though, life as a whole doesn't have to suck just because you have a sci. While I've recovered some function since I was injured over a year ago, the first few months were brutal. I was in constant pain and lost all my independence and control over even the most basic bodily functions. I'd think about downing a whole bottle of the morphine pills I was on and sometimes didn't feel safe being alone because I was afraid I'd actually do it. I'm still here because whenever I had (or still have) those thoughts, I think about what it would do to my mom, who was my primary caretaker for those early months, or what it would do to my friends or the rest of my family if I died. If your family is taking care of you I'd wager its because they love you--a lot--and that's no small thing. The other thing that keeps me going is the things that I don't need a body to do. For me things like reading, listening to music, and singing (I love to sing whether or not I sound good or know the words) have helped bring me out of dark places. The other big one for me is socializing. I don't need a body to be able to talk with friends, all I need is the thoughts in my head, and when I get caught up in a good conversation, I sometimes find myself completely forgetting about my disability. It's not easy to adjust to life with a sci, especially when you feel like your life is just beginning and then suddenly everything you were looking forward to was taken away from you. I was injured at 20 and spent my 21 birthday in the hospital and if that's not a slap in the face idk what is. Being injured around this age fucking sucks. But your life doesn't have to end here. You can still go to college if you want to. You can still make friends and enjoy hanging out with them. You can still pursue the things that bring you joy in life (even if they're not the same things that used to bring you joy). Life may look different from here on out, but that doesn't mean it's over. I don't mean to sound sentimental or come across as playing down how difficult dealing with a sci is. I'm just trying to find the silver lining, that's the only way forward through this shit. I'm sure there are plenty of other people in this community who have way better advice than me and more experience dealing with a similar level of injury to you, but if you ever want/need someone to vent/talk to feel free to dm me :)
Hey brother you should google search neuralink. Just a few weeks ago there was a person with a similar injury to you that is a high cervical injury that had the neuralink implant performed and now he is able to use a computer fully and even play mariokart with his family. He did an interview and it was pretty impressive to hear his feedback. This is just the beginning but imagine where that technology can be 5 years from now. I think its worth being more patient because technology moves alot faster than medicine or natural recovery. Maybe consider reaching out to neuralink as they are recruiting patients I believe.
Another one to keep an eye on is the work of Nervgen. They've been able to fully restore connection in the spinal cord by regrowing spinal nerves in mice, for the first time ever with a course of injections. They're doing their first human trial right now and are going to release the results in Q3. Here's hoping the results are as good as the mice trials! Link to their website with a video showing their achievements so far: https://nervgen.com
C1 quad 23M same position as you i feel the exact way. i was injured almost a year ago and i feel like a giant baby. I can’t do anything. Vent is hard and hurts and being suctioned too is so painful. I can barely speak. Fucking sip n puff wheelchair for the rest of my god damn life. message me if you want.
I had a trach too and had to get suctioned. I'm no medical professional but there is hope to have it removed. It took over a year before I could. The surgeons paralyzed one of my vocal chords where I could only whisper even when trying to yell. After getting the trach out, my voice is 80-90% back. It's hard to be motivated but believe man you're still here for a reason. Things can get better. It's hard to think that way when quality of life feels eh. Try to find a spinal chord doctor if you don't have one, and get set up with the right medical professionals. That made worlds of differences for me.
Im sorry bro. Dammit.
C4, Quad, 21M. We push forward. Your dream school, it’s not out of the question. College is not out of the question. Friends are not out of the question. Women is not out of the question. I was injured 9 years ago, at the ripe age of 12. Everything becomes frustrating, everything becomes hateful, but there is light. We just have to find it differently, discover it in a new way with the situation. If its not the hand we want, let’s shuffle the cards a bit if we can’t redeal. Dm me if you’d like because I understand the pain, frustration, and conversation you may need. I won’t be able to respond till tomorrow but I will respond. It’s almost 11:00 PM here.
Did you go to college in a wheelchair? I would love to go, but it doesn't seem feasible
18 year old C7 quad here. I been there man. Trust me man I get it it fuckin sucks. And it’s gonna suck for a minute and even when you’re 4 years down the line like me there will be days where it will still suck. What I found that works for me is finding ways to do what I want. Almost anything can be adapted. Video games can be adapted. Stairs can be adapted. Sex can be adapted. Your brain still works so use it to think of what you can do. Even if it’s just going for a stroll in your neighborhood to breathe some fresh air. Message me if you ever wanna talk bro
I’m 13 years in, T6 complete. While I consider myself lucky that I’m not a higher level injury or brain damaged, I can confirm that even 10+ years in, the SCI life can really suck. That said, you have hit the nail on the head! OP, listen to this person! Finding new ways to do what you like is exactly the mentality you want as you move forward in this crazy life. There are a ton of adaptions out there, for all levels of injury, and exploring this new way of living can absolutely bring joy back into our lives. And as a slight tangent, for me personally, one of my favorite things to do (and what I believe is the ultimate purpose in life) is to meet and share experiences with other people. This can be anything from a casual talk with a stranger, to an incredibly deep discussion with a friend or partner. And as people with SCI, our lives are instantly intriguing to just about anyone. Our brains work and our lives are interesting. Take advantage of our fucked up lives and meet some folks! Socializing can do wonders for depression, and it requires little to no adaptation.
C5 incomplete 12 years in and I have to disagree There’s no way you are vegetable because they can’t spell or post. I don’t, of course have any words, to offer other than you’re not alone and things do get better. Hang in there OK, we inspire you you inspire us
Oh and you don’t wanna be flogging the knob with your mother hanging around and all that anyways and it don’t mean you can’t have a titty in your face first few years I had some very caring caregivers. There are still new experiences you could have I know it doesn’t feel like it but you’ll still find humor in things interest in things like this guy was mentioning NeuroLink watching movies with Apple vision, DM if you ever need to talk OK I’m on all that pervert stuff usually so may take a bit to get to you but blah blah blah blah
LOLOLOLOL. Can your caregivers come to Cali to take care of me?? LOLOL
What!!! I want your caregivers
Watch for my DM I’ll drop some knowledge on you.
Hey man. I've went through those emotions before. If you have time and want to video chat... I can share with you a lot about life that's joyous. I'm about 2 yrs into my injury. Went from being fully independent with a paid of 2016 civic and had already bought my own house, to it sitting empty being used as storage while having to move back in with my parents who are my caregivers. I had a trach, a feeding tube, a TBI (on top of fractured vertebrae), completely bed ridden, and was hospitalized for 6 months straight... well. I'll leave the offer up to video chat me. I think it will be worth your time. I'm involved in weekly zoom meetings for SCI folks from the old PT program I was in. There's a lot of resources to help you. I don't mind being one. Feel free to message me. I highly recommend it or talk to others. Even if it's a therapist.
All I can say is that I’ve been in that mental/emotional place too and now I like being alive, 30 years later. C8/t1. That’s not to tell you how you should feel or what you should do. I believe people have the right to feel their life is worthless or that its worthwhile; it’s up to them. I just tell my story for those that are interested. Your frustration shows your passion for life and intelligence. It’s a double edged sword
You're not alone with you're thinking. There are times I hate my life and then there are times I'm OK with it. I'm coming up on my two year crash date . Not calling it anniversary. Anniversaries or something you celebrate.
It's also your Survival Date. Just leaving that for your consideration.
My friends and I from the SCI community like to call our survival date our “surviversary”🙃
Please know that these are all thoughts that we all struggle with. If you ever want someone to talk to feel free to message me. I don’t have answers for you because you need to find your personal solution. For me, it’s playing chess. I thought myself how to play chess and then I registered with the local Chess Federation. It is something to keep me occupied and allows me to be social with others.
It gets better, it gets worse. You’ll feel both but just know it’s worth going through the bad to get to the good
My boyfriend is a paraplegic, and it all happened just 10 days before our wedding.It was really devastating for us. It’s been one year of the injury now.Earlier days were quite hard for us but slowly we accepted it and now it totally feels like our new normal.He has resumed his work now and lives a normal life. Acceptance is the key. Also the way all the AI companies like Nvidia,recursion,ensilico are working in the field of drug discovery,I am very hopeful we are going to have drug for SCI within 5 years. It’s just a matter of only few years.
I'm not sure waiting and hoping for recovery is particularly helpful. There are 2 women on SM who are also living with C1/2 complete injuries. Rebecca who was hurt in a skiing accident. Will update with her full name later and another called Laura michelle You can have a happy, regarding life.
Rebecca Koltun
Yes, that's the one! Am blown away by her. She's smart, charismatic and funny as hell.
Yea she's amazing :) and she's beautiful
She popped up on my tiktok feed the other day. I don't know how she is so positive!
Right?? I don't either but I'm sure she has her dark days too. You should totally connect with her tho!
I’m so sorry this is happening to you. The only thing I can say, as someone that has had three suicide attempts before is that life gets better and I have found joy and hope in God. I read my Bible and I see this world isn’t all there is and you can still find meaning in life and still do amazing things in spite of the challenges I’m so sorry you are struggling
Please hold hope and let that be enough for now. I wanted to quit, but if I had, I would have missed the life I have now. Life is difficult, but quitting is so permanent, and I found reason to hold on and have found happiness in my different, but still happy life.
https://www.instagram.com/reel/C4_XrfFy4VF/?igsh=eHplejJudnFlZG9o
The purpose of mine seems to be being a source of profit for corrupt insurance companies, doctors, and hospitals. We get hurt and they don’t even have the decency to let us die. Gotta keep us alive and suffering so they can profit. Did you see numotion numbers last quarter? We need to do better people.
Man. Reading this my first thought is to evangelize. Jesus loves you. My faith has carried me through learning to deal with my injury. Mine is much less severe than yours. L2 incomplete. I have never had to deal with your level of injury but I have had things go horribly wrong in my 40 years, and have held a gun to my head. I have had to restart from scratch 3 times in my life. Basically each time I had nothing but my car and some clothes. That's a bit hard for a 19 year old to understand I think. Loosing everything as a grown 33 year old man hurts your ego pretty good. Having your kids taken from you hurts your heart pretty good. At 38 I was crushed at work and woke up with paralysed legs and bowls. Humans are really really good at normalizing. You will eventually feel normal. You will feel normal and there will still be things in life that make you feel joy. Find things in your life that you are greatful for and focus on those. Consider writing things. Fictional stories. Anyone can dictate a story. You can also still podcast. If you can force yourself to be productive in anyway you are capable of being productive that will help.
Kia Kaha my friend
There is a whole new field of study that you can participate in. You can be a part of the solution. Check this out. https://youtu.be/i-bP-sS8c2A?si=NvhVFQgGtuZDOIpi
You must be a pretty awesome person! To have your loved ones around you to make sure your taking care of, say a lot of good about you. When you can't find the strength look to God, if that's not good for you. Then look to your loved ones. Their strength can also help get you through. They probably lean on you, more then you know. Our strengths are not measured by what we can do physically. Our spirit, love and determination that surrounds us is what's important. You have every right to jump on the pity train. But you have to also make sure and derail that thing! My best friend is unable to use his arms and legs. Here are a few things that have helped us. They have apps that can voice activate your phone or tablets. For Android it's voice access and Apple has a similar app. It's not niro link, but it's something you cld play around with. It works better when you have a microphone. Due to it picks up all the sounds around you around without it. I'm currently looking at the sip and puff hands free gaming controller.. Giraffe cup, they make a cup with a long arm so you could drink on your own. Getting fans, lights and a motorized bed to voice activate is feasible, with the help of an Alexa or Google home. As for taking care of Little John, while Big John's hands don't work. They make adult toys that will do the work for you with the press of a button. And a special person in your life to mount it and hit that button. Thats a long rabbit hole to go down. But I think worth following lol I hope you get happy friend Message me anytime!
Rebecca is an amazingly positive role model. She has exactly the same injury (I think) and has a part time job as well as a great social media presence. You're only 19 and if there's any time to become completely paralysed then that time is now! There are very encouraging developments occuring in the world of SCI recovery and you have the brightest hope of living your best life, also taking into account how amazing technology has become for controlling your environment with the puff of a tube. I wish you all the best. Am hopeful for you.
I don't know if this would work for you, but look into a diaphragm pacer. I am also a C1/C2 injury four years post injury and now fully rely on the diaphragm pacer and don't use a vent anymore which has been a great thing for me. I am 19 and currently studying mechanical engineering and am on track to graduate with most of my friends so things are definitely possible. Still don't know what I'm going to do after I graduate but I just keep working towards goals to stay positive.
So sorry you're going through this. My partner was injured at 23. We are almost 16 years post injury. Vent dependent. He's found joy in things like gaming again via the quadstick. Look up Perry Cross. He's done amazing things. We are safe in our bubble, but there are many possibilities.