I had a client who was paralyzed from the neck down and lived with his parents most of his life. State insurance paid for workers to come in and help with daily tasks. He had been paralyzed for 40 years, due to a rodeo accident. I have a disability myself so we were able to connect on that level. I think we all go through this phase. I went through a huge grieving process when I became blind and sometimes it still becomes a nuisance. But it’s because of how I am treated by others. Sometimes I wish I could just pick up a book and read it and drive myself somewhere but I can’t. And that’s OK. I view every experience as some sort of a lesson and use it to try and help others. Pain is the touchstone of growth. It will get better. I would recommend reading the book the Diving Bell and the butterfly. I see they recently made it into a movie.
My former client had a great attitude, and was very spiritual. He just had a level of acceptance of his situation. We don’t come to it overnight.
I have never wanted children, but I certainly wanted to be married. Just because someone is married and has children, doesn’t mean their life is easy or great. Everybody has their own struggles that they have to deal with .
Thank you for the kind words. I know I should be more positive but it's hard. Especially in times where it feels nothing is going right. I think I go into a bad state when one thing goes wrong, it feels like everything does. I'm not usually bothered about having a family but people around me are and it's just so hard to accept I'll never get those opportunities. I should be happy for them but in truth I have a lot of jealousy and I'm ashamed of it.
I feel rather isolated. I don't have many friends or things to do in the day. I think because of that it brings up these intense emotions towards everything that I can't do. Sometimes even stuff I don't really want to do.
I get that. I went through a grieving process after I became blind. It took me a long time to accept my situation. Allow yourself to grieve and try to connect with others that are similar to you. It was very helpful for me to get out and meet other blind people.
Brilliant answer 👏
It's not easy. I've always had kyphosis and scoliosis. The former a bit, the latter being noticeable and causing pain since I was around 7 or 8 years old. The surgeon who did the corrective surgery botched it up. He's currently being investigated as he's done it to so many people!
Both are now very pronounced and very painful. I look weird plus I've got serious mental health issues, I'm on CD painkillers and struggle daily.
I'm also very Spiritual. I follow Jesus NOT religion, however I struggled to accept the "new" me, I went through all the stages of grief several times! After a while I accepted what I could do rather than get upset over what I can't do.
I was blessed that I had children whilst I was very young because I had to be sterilised aged 21 as getting pregnant again would seriously affect my health.
It isn't easy. There are ways though, of living a good life, different to what we originally wanted but things happen.
I couldn't draw so well as I've got damaged nerves in my arms so started doing digital art.
I really hope you accept it, I'm so sorry 🫂
Hi there are you a therapist? I'm a therapist myself and struggling so much with my new disability. I dunno how to work with this. Cognitive I'm fine but physically I'm limited. My disability is invisible. Have arms but can barely use them. How do you work?
I used to be a therapist, but I am currently a third grade teacher. When I worked with clients in their homes, the agency I worked for paid for a driver. At the time that I was working at that position, I didn’t have as many physical limitations as I do now, I don’t know much about mobility aids or assistive technology for other abilities, but I have seen people use. Dictation software to take notes if they have issues typing. I’m sure there are other people on here that would have more experience with this. When I met with clients, I would type all my notes on my laptop, and I use the screen reader.
I use dictation. I was more so wondering about the mental aspect of it? I grieve my body and the ability to run and do hobbies. I spoke to a client who was suicidal because he had an injury that would leave them out of exercise for a week. Whereas I may never be able to exercise. I'm trying to work out how to not let my own suffering impact while I take a break from work. It's hard
Sure, that makes sense. For me it was just a grief process that I had to go through until I got to a level of acceptance. Many things have happened in my life that changed its course. There are certain things I thought that I would be able to do that I will never get to do. What’s really help me is living in the present moment and accepting what is. Here are some books that helped me:
The Power of Now by Eckhart Tolle
Deep and Simple by Bo Lozoff
I’ve had some health problems arise, and now I will never be able to do certain physical things again. It’s just a part of life and I’m so grateful that I’m here right now.
Acceptance is truly the most difficult part. Mourn, grieve and try to take it easy on yourself. It will get a lot better when acceptance settles. Wishing you all the very best. I will be keeping you in my prayers.
Every day choices are taken away from us. Every day, new choices are offered. It's true that a life can be thought of as a wandering from choice to choice, but it is dynamic and the path keeps unwinding.
Mourning one particular path from long ago seems so random. Why just mourn that path/choice? Why not every other of the myriad ways your life could have unfolded? We only get one lap through life. Your game is still being played. Look at the choices before you this moment and choose well for yourself. Step from rock to rock and you'll cross the river.
So many choices in your future that you have no idea are coming. Enjoy the game as it is.
Thank you. I think I usually wouldn't be that upset about the choices of having a family but currently I have no friends and reason to leave the house. I think I'd be OK if I felt as if I had some choices but currently I don't feel I have any.
It is a very lonely feeling being isolated and no friends to converse with, I used to have a large range of friends but since becoming disabled they have all disappeared. I sit at home each day alone while my family is at school and work. Sometimes I strongly miss the days of yesterday but I have come to realize that must have not really been a friend if they decided not to stick by me through this. So I have decided to forget those days and focus on what lies ahead, which is really the unknown. I have good days and plenty of bad days where I am feeling sorry for myself. But I am working on the new life, the new future because I don’t plan on taking my life so I can either find a way to be happy or continue to sulk. So I choose to be happy, how is this going to work?? Not exactly sure but it is much better than giving up. We just have to choose and work on it the best we can!!!
This is going to sound trivial, but read books. Watch movies. And most importantly, write, draw, scribble, whatever. Pouring those emotions out into a creative effort is life changing (at least it was for me). While it doesn't help the pain, it's kept me sane.
Poetry in particular has been my major calling, but I also write short fiction and have started illustrating and doing photography too. I have spinal fluid leaks amongst other chronic illness which make being upright extremely painful, so I'm pretty much limited to my house and need help with a lot. I write when I have to lie down, I draw when I can tolerate a reclined postion, and I take pictures on my way to the bathroom or to get a drink.
Based on another comment, it seems like you either do write or wish to at some point - so do it! It's easy for me to say this, but don't write because you want to get published. Write because it is a NEED for you to get that story on a page. Write short fiction too, learn the ropes. Read famous books, read indie books, read books you don't like so you know what you shouldn't do. Movies are also phenomenal for studying to learn how to write and pace you work.
Ultimately, it doesn't matter what you write as long as you have that innate desire to keep writing it. None of this directly answered your question as to how to cope, because it's different for everyone. Art (as well as family) is what keeps me going. You find things worth fighting for and you fight for them. And if it for whatever reason goes away, you find something else, write about something. I've found communication to be the most important thing on this planet, be it verbal language, physical/tactile language, written language, or artistic language conveyed through art. You have a unique perspective that isn't heard enough in media. You have a voice.
I love it and it's my passion. I just wish I could always do it. On the harder days I don't have the energy but I desperately want to.
I love sharing things with people. I just wish I knew someone who I could share art with and got that same love for it. I struggle a lot with isolation and finding places to meet people. My family don't really get it. They only like it because I like it but I have a lot of anxiety around showing my writing to them. Not to be edgy but I don't think I'd trust them with it or they'd get it. I want to write about gay shit and being disabled lol. My relationship with my parents is complicated and I don't know if I could trust them with that.
Thank you for your such kind words tho.
This might sound like a long shot to you but I believe your local senior citizen center would welcome you. They tend to have various workshops etc and the other clients can teach you a ton.
Also for those bad days find a journaling app that features voice to text for the bad days
I agree OP needs to write. I grew up with dysgraphia and was always flunking every subject because try as I might I could not write legibly especially not in longhand which was the standard in my time. I started writing a lot last year when I had to start a GoFundMe to try to stave off homelessness due to the new landlords passed out 30 day notices to most if not all residents the day they closed on the properties.
In the past year I’ve learned I have a talent and once I have my personal housing situation sorted out I will be starting a net career doing disability advocacy including all the writing that will go along with it.
I was Lorenzo Milam’s friend and literary agent.
He authored many books.
His classic CRIPZEN a manual for survival
is just that,
Lorenzo passed on a few years ago
CRIPZEN was not available in digital form.
Wanting to make it available, I have scanned it.
I offer it at no charge.
Message me if you would like a copy
\------------------------------------------------------------ Cripzen: A Manual for Survival
By Lorenzo Milam
"Over half of the disabled commit suicide in the first few years of their new lives," says the author. "I wrote CripZen to show my brothers and sisters how to survive and in the process find love for others (and themselves.)"
Milam has been described as "a survivor's survivor." He has been disabled for over forty years. With rich humor and a sageness born of so many years in what he calls "the wilderness of the body," he shows his fellow disabled how to deal with their new world of rehabilitation specialists, SSI, wheelchairs, doctors and a new body.
There are several chapters on aspects of sexuality, including "Celibacy," "Gay Love," "Self Love," "Sex Surrogates," and "Fetishes." (Milam wrote a sexuality column for several years for Independent Living,
[https://www.youtube.com/watch?v=dsi-HNtCPrI](https://www.youtube.com/watch?v=dsi-HNtCPrI)
I scanned the original 200plus pages. By the time I finished I could not face proofing the scans so keep that in mind.
By the time I finished I could not proof it
So here it is.
CRIPZEN googledocs URL
https://docs.google.com/document/d/1rHbUY4Vp7Fp7CuKSB7vkpT32A5FjjrVfu2xQiXLJooQ/edit
So many of us dream of self publishing. Skills are needed. Luckily Internet and the hardware (smartphone, tablet, computers) maybe this simple enough for most here.
Meantime, Reddit and similar areas can get us better and to prepare for putting our confused selves, ready to communicate to other people.
With love, etc, from a very old, cis-married and frail pensioner in Australia.
Jill Kinmont was a skier headed to the Olympics when she was in an accident that left her paralyzed from the shoulders down. She went on to have a great life graduated college had a long career as a teacher married etc. The wiki I post below has links to the movies “The Other Side of the Mountain” parts 1 and 2.
This was decades before we had the ADA etc. Just think of the possibilities and keep going for your dreams.
[https://en.wikipedia.org/wiki/Jill_Kinmont_Boothe](https://en.wikipedia.org/wiki/Jill_Kinmont_Boothe)
Hello friend.
I was born with a physical disability that renders me to use a wheelchair 95% of the time, but I am so sorry for how you are feeling about having lost your previous life. I mourn with you. I used to fear the lack of independency and not being able to start a family, as everyone around me was moving on to those stages of life. But before I faced that fear, I had to face myself. I had to learn to accept myself, followed by learning to love myself. From there, things got better. I learned to be patient, kind, and social. I learned to work and adapt with my physical disability. I now have a stable job, many friends, a house, I drive a car with hand controls, a beautiful wife who accepts all of me, and soon I will be a father. Don't give up, and you will make it just like I did.
Now, regarding your disability as a quadriplegic. I feel you will benefit from this and learn to move forward with this. My wife was engaged in an SCI (spinal cord injury) community where many people share stories of their injuries, make friends, and learn to navigate life by having each other and giving advice, etc. It's not just quads, its disabled people of all types (CP, Spina bifida, muscle dystrophy types, etc) This community is on a national scale (and international since they also mingle with Canadians, australians, europeans, etc), and although everybody lives in different states, a lot of them know each other just from participating in wheelchair sports and other national social event gatherings. You will 100% feel supported and have many peers who share your experience. If you can find a wheelchair community/group close to you and/or research some wheelchair sports you could join or spectate into, it will help you a lot.
I highly recommend you watch this documentary on Youtube called "Re-Inventing The Wheel" by Canadian indie filmmakers. Here is the link. It's an hour long but I hope you will watch it.
https://youtu.be/cCgw1xpfykY?si=yVb7HqNwHJ6K2bAB
This is about a Canadian guy from BC who, at the time of the film, was navigating life after a neck injury, as well as some stereotypical scenarios we go through with the public. He finds the wheelchair community (my wife has met some of the quads in this film). You will see people who have found love after injury and people who are starting families and have kids after injuries. It's a very emotional documentary.
I have faith that you will find your way in life, just like many other SCI individuals.
I wasn't paralyzed yet when I found out I could never have children but I worked with infants to kindergarten so I got my baby fix there..... until I became paralyzed while working. Now I can't really tolerate being around younger children.
I had a client who was paralyzed from the neck down and lived with his parents most of his life. State insurance paid for workers to come in and help with daily tasks. He had been paralyzed for 40 years, due to a rodeo accident. I have a disability myself so we were able to connect on that level. I think we all go through this phase. I went through a huge grieving process when I became blind and sometimes it still becomes a nuisance. But it’s because of how I am treated by others. Sometimes I wish I could just pick up a book and read it and drive myself somewhere but I can’t. And that’s OK. I view every experience as some sort of a lesson and use it to try and help others. Pain is the touchstone of growth. It will get better. I would recommend reading the book the Diving Bell and the butterfly. I see they recently made it into a movie. My former client had a great attitude, and was very spiritual. He just had a level of acceptance of his situation. We don’t come to it overnight. I have never wanted children, but I certainly wanted to be married. Just because someone is married and has children, doesn’t mean their life is easy or great. Everybody has their own struggles that they have to deal with .
Thank you for the kind words. I know I should be more positive but it's hard. Especially in times where it feels nothing is going right. I think I go into a bad state when one thing goes wrong, it feels like everything does. I'm not usually bothered about having a family but people around me are and it's just so hard to accept I'll never get those opportunities. I should be happy for them but in truth I have a lot of jealousy and I'm ashamed of it. I feel rather isolated. I don't have many friends or things to do in the day. I think because of that it brings up these intense emotions towards everything that I can't do. Sometimes even stuff I don't really want to do.
I get that. I went through a grieving process after I became blind. It took me a long time to accept my situation. Allow yourself to grieve and try to connect with others that are similar to you. It was very helpful for me to get out and meet other blind people.
Brilliant answer 👏 It's not easy. I've always had kyphosis and scoliosis. The former a bit, the latter being noticeable and causing pain since I was around 7 or 8 years old. The surgeon who did the corrective surgery botched it up. He's currently being investigated as he's done it to so many people! Both are now very pronounced and very painful. I look weird plus I've got serious mental health issues, I'm on CD painkillers and struggle daily. I'm also very Spiritual. I follow Jesus NOT religion, however I struggled to accept the "new" me, I went through all the stages of grief several times! After a while I accepted what I could do rather than get upset over what I can't do. I was blessed that I had children whilst I was very young because I had to be sterilised aged 21 as getting pregnant again would seriously affect my health. It isn't easy. There are ways though, of living a good life, different to what we originally wanted but things happen. I couldn't draw so well as I've got damaged nerves in my arms so started doing digital art. I really hope you accept it, I'm so sorry 🫂
Very well said!!! And you have inspired me with your words. So thank you so very much!!!
Hi there are you a therapist? I'm a therapist myself and struggling so much with my new disability. I dunno how to work with this. Cognitive I'm fine but physically I'm limited. My disability is invisible. Have arms but can barely use them. How do you work?
I used to be a therapist, but I am currently a third grade teacher. When I worked with clients in their homes, the agency I worked for paid for a driver. At the time that I was working at that position, I didn’t have as many physical limitations as I do now, I don’t know much about mobility aids or assistive technology for other abilities, but I have seen people use. Dictation software to take notes if they have issues typing. I’m sure there are other people on here that would have more experience with this. When I met with clients, I would type all my notes on my laptop, and I use the screen reader.
I use dictation. I was more so wondering about the mental aspect of it? I grieve my body and the ability to run and do hobbies. I spoke to a client who was suicidal because he had an injury that would leave them out of exercise for a week. Whereas I may never be able to exercise. I'm trying to work out how to not let my own suffering impact while I take a break from work. It's hard
Sure, that makes sense. For me it was just a grief process that I had to go through until I got to a level of acceptance. Many things have happened in my life that changed its course. There are certain things I thought that I would be able to do that I will never get to do. What’s really help me is living in the present moment and accepting what is. Here are some books that helped me: The Power of Now by Eckhart Tolle Deep and Simple by Bo Lozoff I’ve had some health problems arise, and now I will never be able to do certain physical things again. It’s just a part of life and I’m so grateful that I’m here right now.
Acceptance is truly the most difficult part. Mourn, grieve and try to take it easy on yourself. It will get a lot better when acceptance settles. Wishing you all the very best. I will be keeping you in my prayers.
Every day choices are taken away from us. Every day, new choices are offered. It's true that a life can be thought of as a wandering from choice to choice, but it is dynamic and the path keeps unwinding. Mourning one particular path from long ago seems so random. Why just mourn that path/choice? Why not every other of the myriad ways your life could have unfolded? We only get one lap through life. Your game is still being played. Look at the choices before you this moment and choose well for yourself. Step from rock to rock and you'll cross the river. So many choices in your future that you have no idea are coming. Enjoy the game as it is.
Thank you. I think I usually wouldn't be that upset about the choices of having a family but currently I have no friends and reason to leave the house. I think I'd be OK if I felt as if I had some choices but currently I don't feel I have any.
Read about Buckminster Fuller. It’s not always what it appears.
What about him?
It is a very lonely feeling being isolated and no friends to converse with, I used to have a large range of friends but since becoming disabled they have all disappeared. I sit at home each day alone while my family is at school and work. Sometimes I strongly miss the days of yesterday but I have come to realize that must have not really been a friend if they decided not to stick by me through this. So I have decided to forget those days and focus on what lies ahead, which is really the unknown. I have good days and plenty of bad days where I am feeling sorry for myself. But I am working on the new life, the new future because I don’t plan on taking my life so I can either find a way to be happy or continue to sulk. So I choose to be happy, how is this going to work?? Not exactly sure but it is much better than giving up. We just have to choose and work on it the best we can!!!
This is going to sound trivial, but read books. Watch movies. And most importantly, write, draw, scribble, whatever. Pouring those emotions out into a creative effort is life changing (at least it was for me). While it doesn't help the pain, it's kept me sane. Poetry in particular has been my major calling, but I also write short fiction and have started illustrating and doing photography too. I have spinal fluid leaks amongst other chronic illness which make being upright extremely painful, so I'm pretty much limited to my house and need help with a lot. I write when I have to lie down, I draw when I can tolerate a reclined postion, and I take pictures on my way to the bathroom or to get a drink. Based on another comment, it seems like you either do write or wish to at some point - so do it! It's easy for me to say this, but don't write because you want to get published. Write because it is a NEED for you to get that story on a page. Write short fiction too, learn the ropes. Read famous books, read indie books, read books you don't like so you know what you shouldn't do. Movies are also phenomenal for studying to learn how to write and pace you work. Ultimately, it doesn't matter what you write as long as you have that innate desire to keep writing it. None of this directly answered your question as to how to cope, because it's different for everyone. Art (as well as family) is what keeps me going. You find things worth fighting for and you fight for them. And if it for whatever reason goes away, you find something else, write about something. I've found communication to be the most important thing on this planet, be it verbal language, physical/tactile language, written language, or artistic language conveyed through art. You have a unique perspective that isn't heard enough in media. You have a voice.
I love it and it's my passion. I just wish I could always do it. On the harder days I don't have the energy but I desperately want to. I love sharing things with people. I just wish I knew someone who I could share art with and got that same love for it. I struggle a lot with isolation and finding places to meet people. My family don't really get it. They only like it because I like it but I have a lot of anxiety around showing my writing to them. Not to be edgy but I don't think I'd trust them with it or they'd get it. I want to write about gay shit and being disabled lol. My relationship with my parents is complicated and I don't know if I could trust them with that. Thank you for your such kind words tho.
This might sound like a long shot to you but I believe your local senior citizen center would welcome you. They tend to have various workshops etc and the other clients can teach you a ton. Also for those bad days find a journaling app that features voice to text for the bad days
I agree OP needs to write. I grew up with dysgraphia and was always flunking every subject because try as I might I could not write legibly especially not in longhand which was the standard in my time. I started writing a lot last year when I had to start a GoFundMe to try to stave off homelessness due to the new landlords passed out 30 day notices to most if not all residents the day they closed on the properties. In the past year I’ve learned I have a talent and once I have my personal housing situation sorted out I will be starting a net career doing disability advocacy including all the writing that will go along with it.
I was Lorenzo Milam’s friend and literary agent. He authored many books. His classic CRIPZEN a manual for survival is just that, Lorenzo passed on a few years ago CRIPZEN was not available in digital form. Wanting to make it available, I have scanned it. I offer it at no charge. Message me if you would like a copy \------------------------------------------------------------ Cripzen: A Manual for Survival By Lorenzo Milam "Over half of the disabled commit suicide in the first few years of their new lives," says the author. "I wrote CripZen to show my brothers and sisters how to survive and in the process find love for others (and themselves.)" Milam has been described as "a survivor's survivor." He has been disabled for over forty years. With rich humor and a sageness born of so many years in what he calls "the wilderness of the body," he shows his fellow disabled how to deal with their new world of rehabilitation specialists, SSI, wheelchairs, doctors and a new body. There are several chapters on aspects of sexuality, including "Celibacy," "Gay Love," "Self Love," "Sex Surrogates," and "Fetishes." (Milam wrote a sexuality column for several years for Independent Living, [https://www.youtube.com/watch?v=dsi-HNtCPrI](https://www.youtube.com/watch?v=dsi-HNtCPrI)
I would appreciate that. Thank you. It's nice to see disabled authors. It's a dream of mine to get published.
I scanned the original 200plus pages. By the time I finished I could not face proofing the scans so keep that in mind. By the time I finished I could not proof it So here it is. CRIPZEN googledocs URL https://docs.google.com/document/d/1rHbUY4Vp7Fp7CuKSB7vkpT32A5FjjrVfu2xQiXLJooQ/edit
So many of us dream of self publishing. Skills are needed. Luckily Internet and the hardware (smartphone, tablet, computers) maybe this simple enough for most here. Meantime, Reddit and similar areas can get us better and to prepare for putting our confused selves, ready to communicate to other people. With love, etc, from a very old, cis-married and frail pensioner in Australia.
Thanks
I am 36, and I was diagnosed with ALS on November of 2022. I understand what you’re going through.
Hey I sent you a pm, my GF is a quadriplegic and i just want to say you have a whole life ahead of you and anything is possible, wishing you well
Jill Kinmont was a skier headed to the Olympics when she was in an accident that left her paralyzed from the shoulders down. She went on to have a great life graduated college had a long career as a teacher married etc. The wiki I post below has links to the movies “The Other Side of the Mountain” parts 1 and 2. This was decades before we had the ADA etc. Just think of the possibilities and keep going for your dreams. [https://en.wikipedia.org/wiki/Jill_Kinmont_Boothe](https://en.wikipedia.org/wiki/Jill_Kinmont_Boothe)
Hello friend. I was born with a physical disability that renders me to use a wheelchair 95% of the time, but I am so sorry for how you are feeling about having lost your previous life. I mourn with you. I used to fear the lack of independency and not being able to start a family, as everyone around me was moving on to those stages of life. But before I faced that fear, I had to face myself. I had to learn to accept myself, followed by learning to love myself. From there, things got better. I learned to be patient, kind, and social. I learned to work and adapt with my physical disability. I now have a stable job, many friends, a house, I drive a car with hand controls, a beautiful wife who accepts all of me, and soon I will be a father. Don't give up, and you will make it just like I did. Now, regarding your disability as a quadriplegic. I feel you will benefit from this and learn to move forward with this. My wife was engaged in an SCI (spinal cord injury) community where many people share stories of their injuries, make friends, and learn to navigate life by having each other and giving advice, etc. It's not just quads, its disabled people of all types (CP, Spina bifida, muscle dystrophy types, etc) This community is on a national scale (and international since they also mingle with Canadians, australians, europeans, etc), and although everybody lives in different states, a lot of them know each other just from participating in wheelchair sports and other national social event gatherings. You will 100% feel supported and have many peers who share your experience. If you can find a wheelchair community/group close to you and/or research some wheelchair sports you could join or spectate into, it will help you a lot. I highly recommend you watch this documentary on Youtube called "Re-Inventing The Wheel" by Canadian indie filmmakers. Here is the link. It's an hour long but I hope you will watch it. https://youtu.be/cCgw1xpfykY?si=yVb7HqNwHJ6K2bAB This is about a Canadian guy from BC who, at the time of the film, was navigating life after a neck injury, as well as some stereotypical scenarios we go through with the public. He finds the wheelchair community (my wife has met some of the quads in this film). You will see people who have found love after injury and people who are starting families and have kids after injuries. It's a very emotional documentary. I have faith that you will find your way in life, just like many other SCI individuals.
How did you learn to accept and love yourself? This is my struggle right now. I don’t accept this body anymore
Oof. I feel this in my soul
I wasn't paralyzed yet when I found out I could never have children but I worked with infants to kindergarten so I got my baby fix there..... until I became paralyzed while working. Now I can't really tolerate being around younger children.