The real answer that anyone can realistically give you is to fight for your life and dont give in to despair. You can have your time to despair of course, but dont let it swallow you. Thats pretty general and beyond that, it’ll be advice to seek out programs that help which is also general and not always helpful.
Your life is your own and flavored with so many variables that internet people can only help so much. I won’t give you advice, but I will tell you who I am and maybe that will help in some small way.
I am a double leg amputee. A hip disarticulation on the left (no leg at all) and an above knee amputation on the right. I was a 35 year old professional driver with a six month old daughter when the accident that took my legs happened to me. I had no fault in it and had no way of seeing it coming. It was something I was forced to deal with. I was in a coma for a month.
I woke up to endless pain, an ended relationship that was rocky anyway and a body so weak I had to start from scratch on even basic things like opening a can of soda. I was told I would have to use a power chair because of how damaged I was. I worked to be stronger than that and I succeeded, despite my endless phantom limb pain sometimes driving me insane. I use a manual chair by choice and I can do many other things I was told I wouldn’t be able to do again. Being legless and poor didn’t even stop me from meeting my wife, who is doing crafts with my daughter next to me.
It’s been a decade since the accident and my life is more solidly grounded now then it ever was when I was able bodied. I faced enormous pain and physical challenges and still do, but I’m glad of it. It was the forging fire that revealed who I am now.
There is a you that is looking back from a decade in the future. Who do they see in you now? The beginning of some maudlin end without even a fight, or the spark that eventually became your fire? If I can get through the shit, so can you.
Thanks. I appreciate the story and support. I certainly have no idea what it would be like in your situation. I was an amateur bicycle racer. I was folded backwards and had most of my features in my neck, but all of my pain has always been thoracic (between the shoulder blades). My limitations are not just pain but more like a muscular failure that posture causes. I wish I could sit in a chair. I mean no disrespect when I say this, but I would trade my legs for the ability to hold my head up and hold posture.
In cycling and racing, it is more of a mental sport than a physical. A crit is a formal type of bicycle race set up around an industrial park loop or a city block type of environment. It involves around 50-100 people and lasts anywhere form 20 minutes to 1 hour for each class of racers. By the last few laps, you’re blood oxygen is super low and all of your blood flow is going to your legs. The pain is extreme and everything in your body is saying hell no. The last lap is all about strategy, being sharp, and self aware. At the same time, it feels like I have the mental capacity of a toddler. The game of it becomes this internal battle between instinct, intellect, and how that aligns with chance and the way 10-15 other people on the front are coping with similar constraints. The physicality differences are negligible under most circumstances at this stage. It largely comes down to who has the highest pain threshold in the moment.
For me cycling has always been this fascinating struggle of overcoming pain perception. This is my background relative to what I call pain. I hurt a tremendous amount all of the time. If that is all I had to deal with, I would be fully functional. My old physical therapist for 2 years started trying to invent tools to help him with deep tissue massage because I wore him out unlike anyone he had ever worked on. I told him, “blood sweat or tears, otherwise you’re not pushing me hard enough.” I stopped pushing like that after I broke my scapula from pushing too hard. That is when I started developing a better routine empirically that got me off the rollercoaster of major ups and downs and allowed me to get more consistent sleep. Still I’m slowly degrading. I fight, but I fight with routine structure.
No pain meds change what hurts in my back or the length of time I can endure, they only impact my cognitive function and how much I care. I guarantee that something muscular inside of me is broken or loose or damaged in some way. A more advanced future state of medicine would likely fix me without issues.
I’ve also gone down twice on the bike since the broken neck and back. Both times I had broken ribs. Both times I just rode back home, because that kind of pain is a joke to me. When my ribs swell like that, I actually feel better. Both times, for two weeks I felt the best I have felt in 10 years. An epidural injection on both sides of my Spesious me felt great as well, but only lasted 3 days. So all I need to do is break some ribs and I am functional again. You’d think that would mean something to someone in medicine, but no dice.
It probably sounds crazy, but having something that is clearly able to put me in the disabled category would in many ways make my life easier, but that part is just a minor issue. The really hard part for me is that I can’t really be around other people. I often regret my words in person. I can’t suppress the pain to the point of fully masking it. I can’t do anything in the outside world with dignity or be myself. The act of getting dressed and transportation is already placing me under extreme stress. Laying in bed, I toss and turn. I’m always uncomfortable and deeply sleep deprived. I dread any upright activity, but wake up in a cold sweat every day from being in the same positions for too long. Anything that helps with this level of pain causes me to stay in the same positions longer and that leads to pulls, strains, and a much larger cycle of minor ups but much lower downs. I can’t get assistance like I need. I’ve tried to date and meet people, but I am not myself, and the physical cost to try is enormous. I have nothing to offer anyone. The thought of burdening someone else, on top of the physical and mental cost were simply untenable for me. I have to manage me mental state and sleep first above all else.
That is why I love a place like Lemmy. I can write, reread, and think out my words in a way that feels like who I want to be, like I am myself in a way.
For you it seems to have been the fire. For me, I was already a freaking torch. The hard thing for me was acknowledging and coming to terms with my limitations and making the best of what I can do and what I have. I’m already in a prison of sorts. It can always be worse, until you’re not around to talk about it. I’m glad you found yourself. Indeed, I was a car nut that built engines, owned a body shop, painted, and did airbrush graphics. I was 340 lbs in '09 and under 190 lbs in 2013, because what good is my B&M mini blower in my camaro when I can’t overhaul and supercharge my own meatsack engine. I had the heads off of that camaro at the time, and had to sell it all when I couldn’t recover to the point of finishing the port and build. I’ve reinvented my Maker spirit elsewhere, but I died 2/26/14 and had to come to terms with a newly invented me. I understand that part. It is hard to relate just how odd it is to be so capable, but yet so very limited at the same time. I can’t effectively network socially, and I am very aware of the outcome that this means. This is not a plea for help. I don’t really need or want any. It is a statement of the indignity really. I shouldn’t be put into this situation and help so impossibly out of reach in terms of state support. I don’t have the margins to invest myself in the malignancy of the system and manage my needs and routine. It seems the concept of disability always accompanies the idea that one can sit upright, albeit in a manual or power chair. Thoracic damage is very rare. It only represents around 5% of cases for most neurosurgeons. It doesn’t follow any of the regular assumptions about back problems in how it manifests.
I’m well aware, the person looking back at me, if they are still alive, will roll their eyes at how dumb I am now, how much better I had it, and how I had nothing to complain about. Thanks for your thoughts and story. I’m glad you found your fire. I may not be a torch, but hey, at least I am still a lighter and can hold a flame.
The real answer that anyone can realistically give you is to fight for your life and dont give in to despair. You can have your time to despair of course, but dont let it swallow you. Thats pretty general and beyond that, it’ll be advice to seek out programs that help which is also general and not always helpful.
Your life is your own and flavored with so many variables that internet people can only help so much. I won’t give you advice, but I will tell you who I am and maybe that will help in some small way.
I am a double leg amputee. A hip disarticulation on the left (no leg at all) and an above knee amputation on the right. I was a 35 year old professional driver with a six month old daughter when the accident that took my legs happened to me. I had no fault in it and had no way of seeing it coming. It was something I was forced to deal with. I was in a coma for a month.
I woke up to endless pain, an ended relationship that was rocky anyway and a body so weak I had to start from scratch on even basic things like opening a can of soda. I was told I would have to use a power chair because of how damaged I was. I worked to be stronger than that and I succeeded, despite my endless phantom limb pain sometimes driving me insane. I use a manual chair by choice and I can do many other things I was told I wouldn’t be able to do again. Being legless and poor didn’t even stop me from meeting my wife, who is doing crafts with my daughter next to me.
It’s been a decade since the accident and my life is more solidly grounded now then it ever was when I was able bodied. I faced enormous pain and physical challenges and still do, but I’m glad of it. It was the forging fire that revealed who I am now.
There is a you that is looking back from a decade in the future. Who do they see in you now? The beginning of some maudlin end without even a fight, or the spark that eventually became your fire? If I can get through the shit, so can you.
Thanks. I appreciate the story and support. I certainly have no idea what it would be like in your situation. I was an amateur bicycle racer. I was folded backwards and had most of my features in my neck, but all of my pain has always been thoracic (between the shoulder blades). My limitations are not just pain but more like a muscular failure that posture causes. I wish I could sit in a chair. I mean no disrespect when I say this, but I would trade my legs for the ability to hold my head up and hold posture.
In cycling and racing, it is more of a mental sport than a physical. A crit is a formal type of bicycle race set up around an industrial park loop or a city block type of environment. It involves around 50-100 people and lasts anywhere form 20 minutes to 1 hour for each class of racers. By the last few laps, you’re blood oxygen is super low and all of your blood flow is going to your legs. The pain is extreme and everything in your body is saying hell no. The last lap is all about strategy, being sharp, and self aware. At the same time, it feels like I have the mental capacity of a toddler. The game of it becomes this internal battle between instinct, intellect, and how that aligns with chance and the way 10-15 other people on the front are coping with similar constraints. The physicality differences are negligible under most circumstances at this stage. It largely comes down to who has the highest pain threshold in the moment.
For me cycling has always been this fascinating struggle of overcoming pain perception. This is my background relative to what I call pain. I hurt a tremendous amount all of the time. If that is all I had to deal with, I would be fully functional. My old physical therapist for 2 years started trying to invent tools to help him with deep tissue massage because I wore him out unlike anyone he had ever worked on. I told him, “blood sweat or tears, otherwise you’re not pushing me hard enough.” I stopped pushing like that after I broke my scapula from pushing too hard. That is when I started developing a better routine empirically that got me off the rollercoaster of major ups and downs and allowed me to get more consistent sleep. Still I’m slowly degrading. I fight, but I fight with routine structure.
No pain meds change what hurts in my back or the length of time I can endure, they only impact my cognitive function and how much I care. I guarantee that something muscular inside of me is broken or loose or damaged in some way. A more advanced future state of medicine would likely fix me without issues.
I’ve also gone down twice on the bike since the broken neck and back. Both times I had broken ribs. Both times I just rode back home, because that kind of pain is a joke to me. When my ribs swell like that, I actually feel better. Both times, for two weeks I felt the best I have felt in 10 years. An epidural injection on both sides of my Spesious me felt great as well, but only lasted 3 days. So all I need to do is break some ribs and I am functional again. You’d think that would mean something to someone in medicine, but no dice.
It probably sounds crazy, but having something that is clearly able to put me in the disabled category would in many ways make my life easier, but that part is just a minor issue. The really hard part for me is that I can’t really be around other people. I often regret my words in person. I can’t suppress the pain to the point of fully masking it. I can’t do anything in the outside world with dignity or be myself. The act of getting dressed and transportation is already placing me under extreme stress. Laying in bed, I toss and turn. I’m always uncomfortable and deeply sleep deprived. I dread any upright activity, but wake up in a cold sweat every day from being in the same positions for too long. Anything that helps with this level of pain causes me to stay in the same positions longer and that leads to pulls, strains, and a much larger cycle of minor ups but much lower downs. I can’t get assistance like I need. I’ve tried to date and meet people, but I am not myself, and the physical cost to try is enormous. I have nothing to offer anyone. The thought of burdening someone else, on top of the physical and mental cost were simply untenable for me. I have to manage me mental state and sleep first above all else.
That is why I love a place like Lemmy. I can write, reread, and think out my words in a way that feels like who I want to be, like I am myself in a way.
For you it seems to have been the fire. For me, I was already a freaking torch. The hard thing for me was acknowledging and coming to terms with my limitations and making the best of what I can do and what I have. I’m already in a prison of sorts. It can always be worse, until you’re not around to talk about it. I’m glad you found yourself. Indeed, I was a car nut that built engines, owned a body shop, painted, and did airbrush graphics. I was 340 lbs in '09 and under 190 lbs in 2013, because what good is my B&M mini blower in my camaro when I can’t overhaul and supercharge my own meatsack engine. I had the heads off of that camaro at the time, and had to sell it all when I couldn’t recover to the point of finishing the port and build. I’ve reinvented my Maker spirit elsewhere, but I died 2/26/14 and had to come to terms with a newly invented me. I understand that part. It is hard to relate just how odd it is to be so capable, but yet so very limited at the same time. I can’t effectively network socially, and I am very aware of the outcome that this means. This is not a plea for help. I don’t really need or want any. It is a statement of the indignity really. I shouldn’t be put into this situation and help so impossibly out of reach in terms of state support. I don’t have the margins to invest myself in the malignancy of the system and manage my needs and routine. It seems the concept of disability always accompanies the idea that one can sit upright, albeit in a manual or power chair. Thoracic damage is very rare. It only represents around 5% of cases for most neurosurgeons. It doesn’t follow any of the regular assumptions about back problems in how it manifests.
I’m well aware, the person looking back at me, if they are still alive, will roll their eyes at how dumb I am now, how much better I had it, and how I had nothing to complain about. Thanks for your thoughts and story. I’m glad you found your fire. I may not be a torch, but hey, at least I am still a lighter and can hold a flame.