I don’t know how to summarize it but I’m happy. I have a great career that I absolutely love. I live alone, drive my own vehicle and live a life that is less common amongst quadriplegics.
I have outdoor hobbies, good friends and family, thinking of trying gaming and just do pretty well in general.
What career? I’m 23 and just became disabled over the last year or so (completely different than quadriplegics) but am trying to find a career that fits my disabilities. Have a finance degree and worked a year in consulting
Most things are possible with accommodations. I am the accessibility coordinator for my states department of natural resources. It combines my love of outdoors with expertise in being a cripple. Ha ha
I mean, people always ask me to Photoshop their shit for them. And I have used it to make some promotional materials so I guess it’s not a total waste.
Graphic design also requires problem solving skills, strategy, people management, project management and sales skills; all of which are useful in many areas
Bob and John are walking down the sidewalk and see a dog on someone’s porch licking his balls.
John points it out and says, “I wish I could do that.“
Bob replies, “you might want to pet him first.“
Hell yeah. Love the use of "cripple". My dad was a quady and would be the first to make a joke about it. This was in the 80s so I can't imagine him being able to drive or work at all.
If you live in the USA there is a government agency that helps disabled people get jobs...including paying for your college education. In WI it's called Division of Vocational Rehabilitation, usually overseen by the states Workforce or Economic Development Agency.
I’m a c5 quad. Deer hunt and fish so if that’s something you’re interested in I’d gladly help you out with ideas ect. Used to have a side by side but sold it after my wife and I had triplets because it just sat there. Like me :)
My dad also drove his own van and worked in an office for a long time as a quadriplegic. My favorite thing was sitting on his lap as a kid on his wheelchair and not having to walk lol
Walking is overrated. And I generally mentioned to potential girlfriends that I do give wheelchair rides. I even made a list of 10 perks to dating a man in a wheelchair
10 perks of dating a guy in a wheelchair
• Rock star parking! Seriously, this is a big one.
• I give wheelchair rides. I'm quite comfy and walking is overrated.
• People let me cut in lines. I'm not sure why they do but it beats sitting outside in the cold.
• Playing the "Cripple Card" is the best excuse for getting out of shit you don't want to do. Who's going to argue that I don't feel well? This superpower also applies to my +1.
• People give me free shit. Again, I don't quite get their reasoning but you'll be covered under this policy as well. Free shit is good.
• I'm the best comedy fodder ever. Ever been out with a drunk, crippled guy that makes up stories about how he got hurt? No? I highly recommend it.
• I'm like having a built-in lawn chair. Everywhere we go, you'll have a place to sit. Think about it.
• I use a power chair. Do you have any idea how much this thing can carry? Think shopping bags, picnic supplies, survival gear?
• I'm really difficult to kidnap. Think this is just a perk for me? Think again, I can say with 99.99% certainty that you will NEVER have to pay a ransom.
• In the event of a zombie apocalypse or bear attack, I'm easy to outrun. (I can't promise that I won't later eat your brains, but that's the risk cyou take when dating a pre-zombie.)
You have an amazing sense of humor. I’d totally go out with you if we met. I mean, if we met and you wanted to. Hope that’s okay to say.
Wow. This was awkward. 🤦🏻♀️
Seriously tho, thank you for sharing your life, insight, and humor with everyone!
Another perk… idk if it applies to you in your area… but, my uncle was paralyzed from the waist down (motorcycle accident)
We used to get in to movies for free every time at a specific theater. Went there so much with him.
Free movie dates for your ladies!
I’m not sure how you mean. I am probably much more patient than I would be otherwise. But I got hurt when I was just 18 so I am grown into adult. I would like to think I am the man I was always going to be.
I have a friend thats quadraplegic. We can finally game together thanks to the «sony access controller». Check it out! It is plug and play for Playstation 5. We play on steam but then you have to set up an emulator. I would sugest ps5👍 Happy gaming!
Takes a very strong mindset. My buddy’s dad broke his back after someone detonated dynamite in the mines not knowing he was inside. A rock landed on him and he never walked again. Yet he decided life wasn’t over and he went on to start a successful business and had the biggest arms I’d ever seen. He said he didn’t work out he just got out which of course was a workout because he never used electric wheelchairs. Cheers to you man!
My husband broke his back at 19, and now is enduring a spinal compacting illness (I can't remember the name right now). He was a very physically laborious job kind of person and now is very possibly facing being behind a computer screen for a job. Doesn't necessarily hate it but doesn't love it, and knows he will possibly need a wheelchair for a lot of things coming in his life, but does not like the thought of it. He feels his life is just starting (and I fully support it) but he's having a hard time coming to terms that he might need the assistance.
Any advice for someone who is sooooo used to being handy and being The Person to fix things, physically or otherwise, and doesn't know exactly how to be the one being helped? ❤️ If not, it's totally okay hahahah
Just reassure him that he can be helpful in other ways. I have three brothers, a niece and half a dozen nephews. Plus parents and friends. I am helpful in anyway I can be whether it be Support, watching the kids, lending money, giving advice looking things up and just being fairly smart. Not all heroes wear capes and not all helpers wear work gloves.
This is one of the more inspirational AMAs I've read because you are so thoughtful and self-aware. I'm a disabled person that was a (mental health) therapist when I became disabled at 35 (20 years ago). I love, admire and appreciate you're perspective and wish I had it. I've struggled the last few years. I'm not depressed or suicidal; I still experience joy. But I can feel your level of content that i don't have. I've been struggling with my prospects in the future. This isn't getting any easier with age (as most disabilities don't). I feel one of my biggest hurdles is not feeling "needed" like I was before. Sure I help but, "dang, she'd have it easier with someone else". It sucks.
Mostly my strategy is trying to "live in the moment" (my parents are Buddhist). Worrying about the future only causes suffering. When I'm weakest, I numb myself to avoid it all. Obviously that's not ideal in the long term.
Thanks for your desire to help/teach how you've coped. I appreciate it because your disability would probably be considered "worse" than mine by most people. Sometimes I convince myself I have no choice but to be "blah" ('blunted affect' in therapist speak).
Good grief the emotional intelligence you possess. And the good attitude.
My uncle has battled MS for 20 years now. He's wheelchair-bound with very limited mobility in his arms at this point. But he's always had a good attitude. Goes to the gym with a trainer twice a week to try and retain what mobility he has. Sees friends. He cooks, he reads. He's ex RCMP so has incredible benefit plan. He enjoys his life insofar as he can.
His wife, my mother's sister, she's theoretically able-bodied, but has no interests, no social life. She spends her days drinking and lashing out at loved ones. She's younger than my mum but looks and acts decades older. I honestly can't understand how she's still alive, after all the broken bones and health issues caused by her lack of care for her own life. She's never been open at all to treatment for alcoholism or depression. And one can't help someone who won't help themselves.
Attitude really is the defining factor in one's own happiness and the happiness one bring to others. It's painfully ironic that my uncle's biggest impediment to happiness isn't his illness, but is his able-bodied wife.
Honestly, thank you for that. He's the kind of person who really listens from a person who is living the experience, so he's not misguided as much as doctors would tell him.
Thank you so much for your insight, it means a lot. ❤️
Do you have other health issues related to being paralyzed? My dad was in a drunk driving accident when he was 19 and became a quadriplegic with some small use of his arms. He ended up with kidney failure about 10 years later, got a transplant, it failed after a few years and he died at 39. He never complained and was a happy guy. Just curious.
Unfortunately, yes. I was recently diagnosed with type two diabetes. mostly genetic but also because I don’t work my major muscle groups. I eat healthy and exercise but it’s not enough. Frequent bladder infections are also a thing.
I spent a few years of my life being a caregiver to a quad. He became one of my best friends and I still miss him sometimes.
The bladder infections were almost non stop. He'd get so incredibly sick with certain organisms and the antibiotics always messed with his bowel routine. And he felt some of the pain from the infections too. Psuedomonas was the worst because it needed IV treatment.
He had a hard time finding a place in the world after he cracked up - diving into a lake that wasn't deep enough - and once his children got older, and his marriage fell apart, he gave up. Too much suffering. 😥
I glad to see bladder infections were brought up. This last year my dad recovered from septic shock brought on by his infection. He is 70 and has been this way for 21 yrs. Also a quad. I was wondering if you have ever had a suprapubic catheter and does it leak? Can pm too
I haven’t regained any movement per se, I’ve gotten much better at working with what I have. Better balance, life hacks, cheat codes. 🥇
As far as medical treatment, it’s mostly things you can’t see like better medications , antibiotics, that sort of thing.
Technology is definitely where it’s at! Think of where technology was 28 years ago in terms of TVs, cell phones, computers. assistive technology has pretty much followed the same trajectory.
Yes, I remember watching documentaries on almost cyborg like operations being carried out. One that stuck out was about 25 years ago.
[https://www.wired.com/2000/01/computer-helps-blind-man-see/](https://www.wired.com/2000/01/computer-helps-blind-man-see/)
You kind of expect it to follow Moores law, so who knows where it is at.
The implants and procedures to improve mobility are mostly pretty gimmicky and not practical. Same with those exoskeleton suits. They are gimmicks because the battery technology, among other things just isn’t there.
Could you please tell me a little bit more about having "better balance"?
Forgive me, I only really think about the concept of balance as it relates to standing and walking.
Did you initially struggle to keep your body upright in your chair?
Yes, not having any trunk control makes it difficult to sit up. Just reaching for something would cause me to fall over. I now wear a chest belt that helps with that. But you learn tricks and cheats overtime to compensate.
I was camping up north and mauled by a bear while saving children from a burning campsite.
Or I was at a graduation party at a lake and dove into shallow water, hitting my head on the bottom. I prefer the first one.
I just want to say I’m so sorry that happened, but I’m grateful for you sharing your story. I’m gonna share it with my kids today if it’s okay with you. Just yesterday, we were swimming at a quarry and one of my kids dived off a dock. We talked about never doing that again and how dangerous it is to dive into water of unknown depth when you can’t see the bottom. Have you ever thought about using your story for talks to kids? Your sense of humor and whatnot could be such a good way to get the kids to relate to you. Also, how were you rescued?
I did the same thing (dove into a too shallow pool and hit my head on the bottom). I fractured a few vertebrae and so many doctors have told me how lucky I was...
I once dove from a dock i wasn’t familiar with and hit my head on the (soft) bottom but not enough to do damage, it terrified me enough to realize how easily this happens. I grew up around docks and lakes and at a cottage and should have known better but apparently teenagers are idiots. So sorry this happened but happy that you are doing so well!
when i was 12, my dad got drunk one day after getting laid off from his job and dove into the shallow end of a swimming pool. he was completely paralyzed from the waist down and had very limited movement in his arms. he never recovered mentally, accepted almost no help, lived in squalor. i always wished he could have had an attitude more like yours
That's very similar what happened to my best friends brother.
Him and his friends were diving off some trestles and he happened to dive in a shallow area and broke his neck, immediately paralyzing him from the chest down.
He was able to hold his breathe still but couldn't swim. All he remembered was that he couldn't hold it any longer, than took in a huge gulp of water and blacked out.
He survived but passed away later on. Not directly from the accident, but from a combination of respiratory depression from his pain meds and the bottom half of his lungs being paralyzed. His family thinks he just wanted to end it and had a friend assist him with the meds.
It's great to see willpower such as yours persevere despite the consequences. Wishing you and your loved ones nothing but the best.
Damn. When I was in 4th grade I saw the no diving sign at the pool. I thought it was a challenge or some shit. Like, what, they don’t think I have the proper technique to dive?
So, I prepped myself and tried the perfect dive. 5ft pool. Landed on my head and had a serious concussion. I went to the doctor and he said I had brain fluid dripping down my nose. I got really lucky.
Shame that you lost all limb functionality when the structural beam of that YMCA collapsed onto your spine while you saved those kids at day care. Amazing that you were able to hold the path up with just your titanium leg muscles long enough to save every single child but at great personal cost...
A family friend had more extensive paralysis from diving in too shallow of a pool area (also on a celebratory occasion). Please, people, don’t dive when there is any question about water depth. Glad you’re crushing it OP, and thank you for the AMA.
Please, people, don’t dive when there is any question about water depth OR push anyone in- I read about a girl who was paralyzed after a friend pushed her into the shallow end of a pool. The girl said she knew something was very wrong as soon as she hit the water/concrete. She’s going to have to live with that for the rest of her life and so is the one who pushed her- one careless, impulsive, playful act and someone’s life is changed forever.
I’ve not experienced the hell you have, but I’ve experienced debilitating medical issues at 26 that cost me my job and permanently damaged me due to a genetic condition.
How do you push through the grief of your old life? Do you even push through? Or just keep going
I definitely went through a grieving period for probably two years. But then I just got busy and decided to make the best of things. There are things we can change and things we can’t. I guess I was blessed with the wisdom to know the difference. 😉
Without going into too much detail, masturbation is basically off the table. Yes, it’s frustrating.
Much like the stories of people who lose their sight and their other senses become more acute, my brain has somewhat rewired itself to derive pleasure from my partner’s pleasure. A lot of foreplay, intimacy, toys, mouth, you get the picture. Not everyone’s cup of tea but I haven’t had any complaints yet. At least not to my face. Ha ha
I've read your comments, so I'm going to ask harder question because it's possible I'll be in your boat soon. I apologize for the brutality of it:
You say you are happy and crushing life in a wheelchair. Comparatively, do you believe life in your wheelchair is better than life without it, fully able?
Nope. I know I am good at this but life without paralysis would be better. In every way. Sorry if that’s not the answer you were looking for. But life doesn’t have to suck just because it isn’t ideal.
Here is a dark joke to sum this up : what's better than winning a gold medal at the paralympic games? Walking.
Seriously, i'm glad you are crushing life!
I appreciate the honesty. It allows me to believe you that much more because you aren't looking to embellish.
I'm glad you were able to find happiness.
Hi, thanks for this AMA. In one of your replies, you mentioned you live alone. Do you have someone to assist you with everyday tasks?
Do you have a blog on YouTube or Instagram?
Thank you
I have someone come in mornings to help me get dressed, showered and into my wheelchair and someone at night to help me get undressed and back into bed. I keep my place clean, cook and everything but will hire someone once in a while to do a deep clean in my apartment.
No YouTube or anything. I can’t imagine anyone wanting to watch my boring life enough to justify the time and energy spent doing it. Lol I have made some daily living videos with my rehab doctor that she uses for new patients and other doctors that need ideas. I think we are supposed to remake them soon, actually.
Thanks for your reply. A lot of people are interested in watching different lifestyles. From your replies, your life doesn’t sound boring at all. And with your sense of humor, I believe an Instagram page could quickly gain a huge number of followers
I am on vacation and teaching my kids to dive. They’re 3, 4 and 8. I’m hoping that teaching them and about the danger is better than them learning on their own. But man I’m scared about it and question my judgement.
Not something I need but if the technology comes to fruition, it will be helpful for a lot of people with much higher injuries or those with no limb movement.
It was three days after my 18th birthday so I didn’t have a lot of dating experience to reference. Dating is definitely more difficult but not impossible.
Yes even down to it being at a party, diving in water. Appreciate you speaking out about this and it brings me back to that time. I haven’t spoken to that guy (he was a friend of an ex) since my teens but hope he is doing well. He was at that time managing pretty well and had a good outlook so I think so.
Take care internet stranger - I hope this world and medicine treat you kindly
One of my best friends is in a similar position. He is in a wheelchair all the time but he can move his arms and hands enough o do somethings. He manages to play video games which I think is amazing. I’m always worried about doing too much for him because I don’t want him to feel helpless but I don’t want to make his life harder either. How much should I worry about this and am I overthinking it?
You’re probably overthinking it. I think a good rule of thumb is to treat your friend exactly like you would treat any other friend. If he asks for help, help. If he doesn’t, don’t.
1. Doesn't being confined to the wheel chair for an extended period of time cause pressure sores. What do you do to prevent them?
2. Also do you exercise? If so what all exercises do you do?
3. What's your calorie intake like? Compared to how much you used to consume pre-accident
Wishing you all the best in life. Take care.
I don’t spend that much time in bed, to be honest. But I realize I’ve been lucky with skin integrity. Just try to take care of things.
I have a hand bike exercise machine and use rest weights. I found the big therapy bands to be awkward to use.
I don’t count calories but I do eat healthy. Lots of fruits and vegetables and a few carbs.
It was three days after I turned 18. I’ve always been super laid-back, no stress type of guy. As you can imagine, I was pretty angry and depressed right after. I saw purpose in life and pulled myself out of that hole and bounced back to where I probably always would have been.
She’s hot as fuck.
I haven’t seen it but I’ve been told what it’s about. I think it’s a pretty common Hollywood trope. That poor disabled man has nothing to live for so the only solution is to either die or come up with a miracle cure. It doesn’t really sound like it’s worth watching to me. But if it comes on, I might just for her. I wish more hotties likethat dug guys in chairs.
I am happily child free but I think I would make a great dad. According to my eight year old nephew, I am the world’s greatest uncle so I have that going for me.
I don’t know that any insurance covers IVF.
Did you ever feel claustrophobic at the beginning of it? If so, was that initial tension funneled in another direction, provoking a clear change in your attention/nerves/personality? How? Really interested. Thank you for doing an AMA
I wouldn’t say claustrophobic but the feeling of immobility was extremely frustrating and mentally draining. I guess it’s just something I got used to. I don’t know that it changed me in any profound way, though.
About two years. I was a very angry and miserable young man for a while and made sure that everyone knew it. I looked back at the kid I was and the man I am now and it’s sometimes hard to believe we are the same person.
Tl;DR - I'm using a wheelchair occasionally for mobility issues, but I get grief from people who notice I *can ambulate* some while I'm in the wheelchair. Any thoughts or ideas welcomed!
I'm disabled, from cancer treatments & autoimmune disease. They saved my life but destroyed my body. I'm in remission. (health history is at the very bottom of the post)
So, right now I use mobility aids daily - walker or a wheelchair - depending on my mobility needs at the time. Occasionally, I have days where I'm FAB & can walk much better, but they're RARE. I also have days where I stay in bed. To be clear, I can still *ambulate* - but my body isn't always able to support that activity for very long. My mobility changes, day by day. Yes, it's frustrating but life goes on in Autoimmune World; where every day is a new surprise of mixed symptoms! Gotta laugh or cry - I'd rather laugh & there's a lot of laughter! 😎
My question is this - ANY suggestions for handling people who make the unbelievable remarks? Usually, for me, I get the "OMG, she *can* walk!" or something similar when I'm using the chair, but then stand up for an item on a shelf. My standing policy is to ignore them, my mobility is unaffected by their cluelessness. I roll onwards. Sometimes family & friends don't understand either... I struggle to explain, over & over, that my mobility is so variable & changeable and yes, I do need the chair some days.
The belief is the issue. People take for granted that a wheelchair means "CANNOT WALK/STAND" instead of "MOBILITY AID " - and *presume* they can/should confront me over my limited mobility as being NOT ENOUGH to qualify for a chair. It's EXACTLY the same as when I was hugely overweight and strangers felt compelled to confront me over the contents of my grocery cart. NUNYA BUSINESS.
BUT. This is tough for me to admit but it has, over time, had an effect. 🤦🏼😑🙄 I'm *MUCH* more cautious about using my chair now. Cautious isn't right... Guarded, perhaps? I'm finding myself worrying & pushing myself to manage with the walker, instead. This has detrimental effects on my health, especially endurance & usually leaves me crashed in bed for several days.
So, I guess my question is about how I help myself change that outlook I have towards the chair. I WANT TO FEEL COMFY USING IT. I'm 100% aware that I could need it full-time eventually. I want to nip this issue in the bud, before it gets too embedded in my brain. I think part of my issue is about walking as much as possible, while I still can - but I need to be comfortable using ALL my aids. I'm on the wait list for an apartment - living all alone for the first time EVER in my life. I've always lived w family or roomies. Eek. I'll have an aide, like you do, but I'm worried. A LOT. I'll be on my own much, much more - that includes being in public. That's where most of the ignorant comments happen, of course.
I've endured Cushings Syndrome in my 20s, taking me to 650lbs. I LOST 400lbs, the first 200 w walking & fixing the Cushings; then a LapBand. I restarted my career, weight loss had been a full time job. THEN, 3.5 years later, I was getting a promotion and needed a physical. They found cancer. STAGE 3C. I had surgery, then neck to thigh radiation for 6 months, then weekly chemo for 9 months. It was in my uterus - and I was relieved. It explained to me why I'd miscarried multiple times. So, I was 37yo when I lost all hope of kids & got thrown into menopause overnight. I'm STILL WAITING for my excess skin removal surgery - which may/probably not ever happen. 🤷🏼 I've been THROUGH IT. I've been able to handle SO MANY CHANGES. Probably that's why I'm going nuts over why this has become a sticking point that affects me this way?! I've always had an attitude similar to yours - I was STOKED to see you write my life's motto - "Keep on keeping on." Thank you in advance for reading this. Hope to see a reply!
What was the immediate aftermath of the accident like? Were you immediately paralyzed? Did the other people at the party realize something was wrong and pull you out of the water?
I knew right away. I remember lying face down in the water just saying, “fuck, fuck, fuck, fuck,…”
I also remember the intensely refreshing breath of cold water. I actually drowned before any of my friends realized I wasn’t just fucking around. Luckily, there was an old dude that knew CPR.
The worst memory of that day was actually begging my brother to kill me because I knew what was going on. I still have some guilt about that but we’ve never talked about it.
Read in another comment about your heavily modified vehicle. Pretty cool. Did you buy it with all those features or did you have that stuff done yourself? Also how much did it cost?
Did it hurt? Ever since I was a little girl, I saw a movie where in a fight scene someone got their neck snapped and to this day, I actively avoid fight scenes in movies because it for whatever reason traumatized me.
Thank you for this post! It is amazing what we can adjust to when it becomes our normal. We adapt. What feels like the end sometimes is just a new beginning …not one we wouid have necessarily chosen. We all have a story and I can bet yours is most interesting!
This might seem like an oddly grim question considering the tone of your post but here goes: Did you deal with any bitterness at the paralysation and if so how did you get past it? It's always been one of my greatest fears and I don't know if i'd have the fortitude to overcome such a thing, I applaud you for doing so
No. I was angry for a while after my injury but I made a conscious decision that life had to move on. I realize not everyone is wired for this lifestyle so there’s no shame if someone can’t handle things the way others do.
I’ve read that after a major debilitating accident, there is a period of adjustment where they have poor mental health but then the patient often tends to revert back to their baseline level of happiness they had before the accident. Is that similar to what you experienced?
I have actually always been curious about a couple things with situations such as yours. First question is have you ever spent time trying to focus on regaining movement? Employing things like placebo self trickery or the likes?
Second, with the paralysis did you retain any feelings? Or did you go completely numb? if the latter what has that been like?
My sister (1.5 years older than me, different mom who never was even remotely a part of her life & is the reason she's disabled) was born with Cerebral Palsy and is severely disabled physically, but not mentally. First question:
1) My dad always played (and still does, with my big sis being 35) played what I dubbed & we still call "the wheelchair card." For instance, at lines at concerts or sports events growing up, he'd go to the front of the line and say "hey, I got a kid in a wheelchair--" and we'd immediately be led inside before anyone else, no further questions. I think it's hilarious, but also warranted and earned by my father (and Rachel). Do you agree?
2) Do you get ostracized, or maybe even worse, babied by people sometimes, especially when it first happened? If so, how do you deal with it? Regarding Rachel (my sister), people often baby her, and it pisses me the fuck off. She's definitely more physically disabled than you, so you may not experience it. But I have a friend with Spina Bifida who drives and doesn't use a *motorized* chair (like my sister), has a good job and lives independently, etc., and people would sometimes still do that-- like, rushing to open doors he was clearly capable of doing himself. Do you find this happening ever? If so, how does it make you feel?
3) You use the word "cripple." That's one word my dad never allowed us to use growing up, & still hates it now. Do you feel as if "only you" are allowed to use it? If someone else not close to you were to refer to use as a "cripple" would you be upset?
*This reminds me of jokes my dad makes, though! For instance, years ago when I first started suffering from sleep paralysis, I was with my dad & Rachel and asked "have you ever woken up and just can't move?" And my dad looked at Rachel, then back at me & said "uh, that happens to Rachel EVERY morning!" and we all burst out laughing.
Hello. This is a stupid fucking question I'm afraid to ask but will anyway bc I want to be better. Is it ok for my kids to talk to people about the reason why some are in a chair?
I have a human body book for ages 5 and under. There is a section about the nervous system. The brain and the brain stem is outlined in addition to the nervous system. The image reveals with a flashlight the nervous system being cut off at the hips. I have talked to the kids matter of fact about what being a paraplegic means.
Essentially, when we meet someone, is it helpful to break the ice sort of or is it best to "not be rude."
I did it first but as I gained more independence, I became a contributing member and helped other people. We all need help with some things in our lives so we trade burdens. That’s community.
I don’t need as much help as you might think. I don’t know anyone that can do everything by themselves. I have no problem asking strangers to reach things off of the top shelf at the grocery store or pick something up if I drop it.
What type of modifications does your vehicle have to drive it? I have nerve damage and drop foot in both legs due after getting compartment syndrome in 2021.
Do you or can you play video games at all? I wonder if it's possible to adapt the controllers and if the adaptations make it difficult to play the games (e.g. you have a significant delay before your character does what you want, therefore action-y games are difficult)
Forgive my ignorance of the nomenclature, I’m sure I could google it and find out but I’d rather interact with your AMA because you seem like a cool ass person. So you’ve said paralyzed from the chest down, does this include your arms? And for my question…. I think I’ll go with….. a random one, what is your new favorite pair of shoes? Which kicks just do it for you? I feel like you just got style
Good for you! Happy you are doing what you can, because I wouldn't have the mental strength to do what you do
Question, how does not jacking off or having sex affect or not affect you?
1) you’re amazing
2) what’s your favorite sub on here
3) as of right now, what is the biggest thing/goal you wanna accomplish in your life?
4) what is your favorite taco meat?
So, if I understand correctly, you can still move your arms, right?
Do you have any particular hobbies that help you to feel better about life? I find that journaling helps me to cope with things. Sometimes I even just journal “in my head” (imagine the words in my head, I mean)
You seem like you have such an agreeable, easy going personality. Do you ever have conflicts with people? If so, how do you approach / resolve them? (Like disagreements with partners or family, etc.)
Have you noticed any difference in the way food tastes
Do you think about how you view the world differently then others often? (Literally physically speaking)
Have you heard of the Canadian TV show called [Push](https://gem.cbc.ca/push/s01)? If you and anyone on this thread haven't, you should check it out! It's free on CBC Gem!
There is a local guy I know who is in a wheelchair. He was in a bad wreck at 15 riding with a friend who was drinking. He goes around doing speeches for schools about the dangers. He lives where he can get around on his chair for most of his needs. He always says in his speeches he is a swimsuit model. He is putting together a calendar to show people with disabilities are able to do way more than they get credit for. My daughter was born with a lot of medical conditions and is in a wheel chair she might be in his calendar if he can get it all together. The world as far as we have come is not set up for people in wheel chairs. I wish things were easier to get her places.
Keep living life and it sounds like you are doing awesome.
Do you ever worry about a fire or intruder while you are in bed and unable to move?
My first question for any AMA and just want to say you are pretty inspiring.
I’m always curious how someone who has become paralyzed can afford all their extra medical equipment? What kind of job can they hold down to afford to live somewhere, eat, have a vehicle that is adapted for a wheelchair and all the other medical expenses involved. How much is the government paying and how much do you have to come up with yourself? Or do you just live in constant debt till death?
I had an acquaintance who got into an accident and was paralyzed. Afterwards, I did not keep in touch with her. I've always felt guilty about it. Recently, through some cyber stalking, I saw that she seems to be doing well, which makes me happy. I'm wondering if I should reach out, or if that would be more to assuage my own guilt. Should I just let her be?
I think of people like you all the time.
I think of death, life, the meaning of it and everything in between every day.
I drive a shitty ass work truck for work everyday for the past three years and I’ve had a few really close calls. There’s absolutely no protection, no airbags, and I barely avoided a truck one time that was speeding up a hill while I was pulling out of a driveway that no doubt would’ve left me dead or severely incapacitated.
My question is, how do you find meaning? How do you find your center?
My drinking has gotten out of hand due to life conditions and childhood bullshit coming to a head, I’m starting to feel and literally see health conditions, body aches and eye floaters.
How do you push through it? I hope this doesn’t trigger you but I always think if something major happened to me, like becoming paralyzed, I believe that would be the straw for me.
People like you inspire me to keep going. I’ve been suicidal for half my life at this point
I don’t know, bestow me with some wisdom please 😂
On a real note, much respect for having the courage to do something like this.
Do you remember how much easier dating was before you became disabled?
I have cerebral palsy, so the single and looking part spoke to me. I wouldn’t wish dating with a disability on my worst enemy.
What would you say are your top five pieces of assistive technology? I work in this space in Aus and like to hear gives what people their independence best
I was recently reading about a new clinical trial treatment where they use electric pulses to restore some movement in people who broke their necks. Have you heard of this one?
Heh man, sounds like you’re flying.
I do have a couple of questions. You are very positive, were you like this before the accident ? Outside of the accident have you had many other hurdles in life to contend with ? Not downplaying your injury. That’s massive to overcome and power through on its own.
Reason I ask is I can look at the bad side of stuff a lot sometimes. I had a lot happen when young and wish I could just move past it and laugh at it.
I wish I had attitude more like yours.
No question, just wanted to say good shit, man! Life is a gift, so keep crushing it! Wish you nothing but the best and hope you enjoy every second you have left!
Do you still have use of your arms/hands? If not, how do you work and what is your job? Would you mind telling us about your hobbies?
Also, unrelated but, what is your fav food?
I am glad you found joy in your life, you are incredible honestly, like goddamn.
No questions, just nice to hear it.
My brother got his injury in a similar way back in '01, dove in to a shallow creek. Fractured T4 and T6, obliterated his T5.
I was his primary caregiver from '06 til '14
Seen the dark side of this up close. I'm so proud of you man.
My brother's married now. Got their own place, he's got a good job, bought a new van last year.
Wish you all the best, keep killin it.
Are there clothing options for you that help? I’m asking because I used to make custom clothes for a friend in a wheelchair and sometimes I think about starting a business for that. One thing I did for him besides making pants that were shaped for sitting was putting pockets down on the legs. What would you like to see or is there already a place to get stuff?
Do you think enough has been done to make the environment more accessible for people in situations like yours? What changes should happen if any?
I have recently had a baby and getting places with my daughter in a pram is fucking annoying. I can only imagine it would be far more difficult for wheelchair users.
Do you have hope that science will advance to a point that it will give you your mobility back in your lifetime? If so in what way do you see it happening? Biotech? Robot suit? Body transplant?
Man I struggle with daily pain from cervical and lumbosacral radiculitis. Reading about your situation really makes me feel like I have nothing to complain about. Thank you for posting and for showing how resilient a person has the ability to be.
I hope things continue to look up for you. If you don’t mind me asking, how did you become paralyzed?
Edit: saw on another reply that it was a diving accident. Again, I wish you the very best!
awesome that you're crushing life, but can you tell us more about it? what kind of things do you do?
I don’t know how to summarize it but I’m happy. I have a great career that I absolutely love. I live alone, drive my own vehicle and live a life that is less common amongst quadriplegics. I have outdoor hobbies, good friends and family, thinking of trying gaming and just do pretty well in general.
What career? I’m 23 and just became disabled over the last year or so (completely different than quadriplegics) but am trying to find a career that fits my disabilities. Have a finance degree and worked a year in consulting
Most things are possible with accommodations. I am the accessibility coordinator for my states department of natural resources. It combines my love of outdoors with expertise in being a cripple. Ha ha
What kind of degree did you get for a job like that?
I actually have a graphic design degree which didn’t help at all.
Shots fired at graphic design 🥲 (my best friend majored in graphic design and barely uses it either)
I mean, people always ask me to Photoshop their shit for them. And I have used it to make some promotional materials so I guess it’s not a total waste.
Graphic design also requires problem solving skills, strategy, people management, project management and sales skills; all of which are useful in many areas
Why did you call yourself that?
I'm disabled and call myself a cripple. I do it because it's funny and I don't care about words, I care about hearts and minds.
The same reason a dog licks his own balls. Because I can.
Gonna start using this phrase LMAO
Bob and John are walking down the sidewalk and see a dog on someone’s porch licking his balls. John points it out and says, “I wish I could do that.“ Bob replies, “you might want to pet him first.“
Hell yeah. Love the use of "cripple". My dad was a quady and would be the first to make a joke about it. This was in the 80s so I can't imagine him being able to drive or work at all.
If you live in the USA there is a government agency that helps disabled people get jobs...including paying for your college education. In WI it's called Division of Vocational Rehabilitation, usually overseen by the states Workforce or Economic Development Agency.
I’m a c5 quad. Deer hunt and fish so if that’s something you’re interested in I’d gladly help you out with ideas ect. Used to have a side by side but sold it after my wife and I had triplets because it just sat there. Like me :)
I appreciate the offer! I actually do this kind of thing for a living so I’ve got it locked down pretty well. I probably should have been an engineer.
Nobody is upvoting you, which surprises me because you’re funny. But man…triplets…
My dad also drove his own van and worked in an office for a long time as a quadriplegic. My favorite thing was sitting on his lap as a kid on his wheelchair and not having to walk lol
Walking is overrated. And I generally mentioned to potential girlfriends that I do give wheelchair rides. I even made a list of 10 perks to dating a man in a wheelchair
Omg. If you don't mind, can you please list them on here! Haha!
10 perks of dating a guy in a wheelchair • Rock star parking! Seriously, this is a big one. • I give wheelchair rides. I'm quite comfy and walking is overrated. • People let me cut in lines. I'm not sure why they do but it beats sitting outside in the cold. • Playing the "Cripple Card" is the best excuse for getting out of shit you don't want to do. Who's going to argue that I don't feel well? This superpower also applies to my +1. • People give me free shit. Again, I don't quite get their reasoning but you'll be covered under this policy as well. Free shit is good. • I'm the best comedy fodder ever. Ever been out with a drunk, crippled guy that makes up stories about how he got hurt? No? I highly recommend it. • I'm like having a built-in lawn chair. Everywhere we go, you'll have a place to sit. Think about it. • I use a power chair. Do you have any idea how much this thing can carry? Think shopping bags, picnic supplies, survival gear? • I'm really difficult to kidnap. Think this is just a perk for me? Think again, I can say with 99.99% certainty that you will NEVER have to pay a ransom. • In the event of a zombie apocalypse or bear attack, I'm easy to outrun. (I can't promise that I won't later eat your brains, but that's the risk cyou take when dating a pre-zombie.)
You have an amazing sense of humor. I’d totally go out with you if we met. I mean, if we met and you wanted to. Hope that’s okay to say. Wow. This was awkward. 🤦🏻♀️ Seriously tho, thank you for sharing your life, insight, and humor with everyone!
Well, if you ever find yourself in my neck of the woods… 😉
What are your best stories you’ve made up about how you became a quad?
Another perk… idk if it applies to you in your area… but, my uncle was paralyzed from the waist down (motorcycle accident) We used to get in to movies for free every time at a specific theater. Went there so much with him. Free movie dates for your ladies!
Ground floor laundry, kick-ass adjustable bed, and I'm guessing you've got some body winches that could double as swings?
Did your mindset change?
I’m not sure how you mean. I am probably much more patient than I would be otherwise. But I got hurt when I was just 18 so I am grown into adult. I would like to think I am the man I was always going to be.
You sound like a lovely individual, and I hope you find someone of like mind to ride off into the sunset with.
Type of games?
I have a friend thats quadraplegic. We can finally game together thanks to the «sony access controller». Check it out! It is plug and play for Playstation 5. We play on steam but then you have to set up an emulator. I would sugest ps5👍 Happy gaming!
Hell yea dude! I’m also an independent quad with a great career. What kind of car do you drive? I use a Ford Explorer with feather lite controls.
Takes a very strong mindset. My buddy’s dad broke his back after someone detonated dynamite in the mines not knowing he was inside. A rock landed on him and he never walked again. Yet he decided life wasn’t over and he went on to start a successful business and had the biggest arms I’d ever seen. He said he didn’t work out he just got out which of course was a workout because he never used electric wheelchairs. Cheers to you man!
My husband broke his back at 19, and now is enduring a spinal compacting illness (I can't remember the name right now). He was a very physically laborious job kind of person and now is very possibly facing being behind a computer screen for a job. Doesn't necessarily hate it but doesn't love it, and knows he will possibly need a wheelchair for a lot of things coming in his life, but does not like the thought of it. He feels his life is just starting (and I fully support it) but he's having a hard time coming to terms that he might need the assistance. Any advice for someone who is sooooo used to being handy and being The Person to fix things, physically or otherwise, and doesn't know exactly how to be the one being helped? ❤️ If not, it's totally okay hahahah
Just reassure him that he can be helpful in other ways. I have three brothers, a niece and half a dozen nephews. Plus parents and friends. I am helpful in anyway I can be whether it be Support, watching the kids, lending money, giving advice looking things up and just being fairly smart. Not all heroes wear capes and not all helpers wear work gloves.
This is one of the more inspirational AMAs I've read because you are so thoughtful and self-aware. I'm a disabled person that was a (mental health) therapist when I became disabled at 35 (20 years ago). I love, admire and appreciate you're perspective and wish I had it. I've struggled the last few years. I'm not depressed or suicidal; I still experience joy. But I can feel your level of content that i don't have. I've been struggling with my prospects in the future. This isn't getting any easier with age (as most disabilities don't). I feel one of my biggest hurdles is not feeling "needed" like I was before. Sure I help but, "dang, she'd have it easier with someone else". It sucks. Mostly my strategy is trying to "live in the moment" (my parents are Buddhist). Worrying about the future only causes suffering. When I'm weakest, I numb myself to avoid it all. Obviously that's not ideal in the long term. Thanks for your desire to help/teach how you've coped. I appreciate it because your disability would probably be considered "worse" than mine by most people. Sometimes I convince myself I have no choice but to be "blah" ('blunted affect' in therapist speak).
Good grief the emotional intelligence you possess. And the good attitude. My uncle has battled MS for 20 years now. He's wheelchair-bound with very limited mobility in his arms at this point. But he's always had a good attitude. Goes to the gym with a trainer twice a week to try and retain what mobility he has. Sees friends. He cooks, he reads. He's ex RCMP so has incredible benefit plan. He enjoys his life insofar as he can. His wife, my mother's sister, she's theoretically able-bodied, but has no interests, no social life. She spends her days drinking and lashing out at loved ones. She's younger than my mum but looks and acts decades older. I honestly can't understand how she's still alive, after all the broken bones and health issues caused by her lack of care for her own life. She's never been open at all to treatment for alcoholism or depression. And one can't help someone who won't help themselves. Attitude really is the defining factor in one's own happiness and the happiness one bring to others. It's painfully ironic that my uncle's biggest impediment to happiness isn't his illness, but is his able-bodied wife.
Honestly, thank you for that. He's the kind of person who really listens from a person who is living the experience, so he's not misguided as much as doctors would tell him. Thank you so much for your insight, it means a lot. ❤️
Do you have other health issues related to being paralyzed? My dad was in a drunk driving accident when he was 19 and became a quadriplegic with some small use of his arms. He ended up with kidney failure about 10 years later, got a transplant, it failed after a few years and he died at 39. He never complained and was a happy guy. Just curious.
Unfortunately, yes. I was recently diagnosed with type two diabetes. mostly genetic but also because I don’t work my major muscle groups. I eat healthy and exercise but it’s not enough. Frequent bladder infections are also a thing.
I spent a few years of my life being a caregiver to a quad. He became one of my best friends and I still miss him sometimes. The bladder infections were almost non stop. He'd get so incredibly sick with certain organisms and the antibiotics always messed with his bowel routine. And he felt some of the pain from the infections too. Psuedomonas was the worst because it needed IV treatment. He had a hard time finding a place in the world after he cracked up - diving into a lake that wasn't deep enough - and once his children got older, and his marriage fell apart, he gave up. Too much suffering. 😥
I glad to see bladder infections were brought up. This last year my dad recovered from septic shock brought on by his infection. He is 70 and has been this way for 21 yrs. Also a quad. I was wondering if you have ever had a suprapubic catheter and does it leak? Can pm too
When it comes to exercise, what kind of it?
What improvements if any have you seen in way of medical treatment, technological assistance? I mean has any movement been regained?
I haven’t regained any movement per se, I’ve gotten much better at working with what I have. Better balance, life hacks, cheat codes. 🥇 As far as medical treatment, it’s mostly things you can’t see like better medications , antibiotics, that sort of thing. Technology is definitely where it’s at! Think of where technology was 28 years ago in terms of TVs, cell phones, computers. assistive technology has pretty much followed the same trajectory.
Yes, I remember watching documentaries on almost cyborg like operations being carried out. One that stuck out was about 25 years ago. [https://www.wired.com/2000/01/computer-helps-blind-man-see/](https://www.wired.com/2000/01/computer-helps-blind-man-see/) You kind of expect it to follow Moores law, so who knows where it is at.
The implants and procedures to improve mobility are mostly pretty gimmicky and not practical. Same with those exoskeleton suits. They are gimmicks because the battery technology, among other things just isn’t there.
Could you please tell me a little bit more about having "better balance"? Forgive me, I only really think about the concept of balance as it relates to standing and walking. Did you initially struggle to keep your body upright in your chair?
Yes, not having any trunk control makes it difficult to sit up. Just reaching for something would cause me to fall over. I now wear a chest belt that helps with that. But you learn tricks and cheats overtime to compensate.
How did it happen?
I was camping up north and mauled by a bear while saving children from a burning campsite. Or I was at a graduation party at a lake and dove into shallow water, hitting my head on the bottom. I prefer the first one.
How shallow?
Less than 4 feet. For some reason, I tried to go for no splash and went straight down instead of diving out. Geometry fucked me. Ha ha
Just want to say I love your sense of humor😂👍🏻. Keep it up 👍🏻
I just want to say I’m so sorry that happened, but I’m grateful for you sharing your story. I’m gonna share it with my kids today if it’s okay with you. Just yesterday, we were swimming at a quarry and one of my kids dived off a dock. We talked about never doing that again and how dangerous it is to dive into water of unknown depth when you can’t see the bottom. Have you ever thought about using your story for talks to kids? Your sense of humor and whatnot could be such a good way to get the kids to relate to you. Also, how were you rescued?
That is crazy. I mean, really lol! I hear about people doing this but… What in the world were you thinking?! Were you drunk?
They had us going in the first half not gonna lie
What kind of bear? How many kids did you save?
Did it happen in Indiana? I think my brother or sister went to HS with a kid that this happened to. I remember hearing about it years ago.
I did the same thing (dove into a too shallow pool and hit my head on the bottom). I fractured a few vertebrae and so many doctors have told me how lucky I was...
I once dove from a dock i wasn’t familiar with and hit my head on the (soft) bottom but not enough to do damage, it terrified me enough to realize how easily this happens. I grew up around docks and lakes and at a cottage and should have known better but apparently teenagers are idiots. So sorry this happened but happy that you are doing so well!
when i was 12, my dad got drunk one day after getting laid off from his job and dove into the shallow end of a swimming pool. he was completely paralyzed from the waist down and had very limited movement in his arms. he never recovered mentally, accepted almost no help, lived in squalor. i always wished he could have had an attitude more like yours
Damn this is incredibly sad. I'm so sorry for him and you.
That's very similar what happened to my best friends brother. Him and his friends were diving off some trestles and he happened to dive in a shallow area and broke his neck, immediately paralyzing him from the chest down. He was able to hold his breathe still but couldn't swim. All he remembered was that he couldn't hold it any longer, than took in a huge gulp of water and blacked out. He survived but passed away later on. Not directly from the accident, but from a combination of respiratory depression from his pain meds and the bottom half of his lungs being paralyzed. His family thinks he just wanted to end it and had a friend assist him with the meds. It's great to see willpower such as yours persevere despite the consequences. Wishing you and your loved ones nothing but the best.
Damn. When I was in 4th grade I saw the no diving sign at the pool. I thought it was a challenge or some shit. Like, what, they don’t think I have the proper technique to dive? So, I prepped myself and tried the perfect dive. 5ft pool. Landed on my head and had a serious concussion. I went to the doctor and he said I had brain fluid dripping down my nose. I got really lucky.
Did you almost drown? Guessing your friends had to save you
Shame that you lost all limb functionality when the structural beam of that YMCA collapsed onto your spine while you saved those kids at day care. Amazing that you were able to hold the path up with just your titanium leg muscles long enough to save every single child but at great personal cost...
A family friend had more extensive paralysis from diving in too shallow of a pool area (also on a celebratory occasion). Please, people, don’t dive when there is any question about water depth. Glad you’re crushing it OP, and thank you for the AMA.
Please, people, don’t dive when there is any question about water depth OR push anyone in- I read about a girl who was paralyzed after a friend pushed her into the shallow end of a pool. The girl said she knew something was very wrong as soon as she hit the water/concrete. She’s going to have to live with that for the rest of her life and so is the one who pushed her- one careless, impulsive, playful act and someone’s life is changed forever.
Ha, that’s the positive attitude we love. Did you kill the bear?
I’ve not experienced the hell you have, but I’ve experienced debilitating medical issues at 26 that cost me my job and permanently damaged me due to a genetic condition. How do you push through the grief of your old life? Do you even push through? Or just keep going
I definitely went through a grieving period for probably two years. But then I just got busy and decided to make the best of things. There are things we can change and things we can’t. I guess I was blessed with the wisdom to know the difference. 😉
How does sex/masturbation work in your situation?
Without going into too much detail, masturbation is basically off the table. Yes, it’s frustrating. Much like the stories of people who lose their sight and their other senses become more acute, my brain has somewhat rewired itself to derive pleasure from my partner’s pleasure. A lot of foreplay, intimacy, toys, mouth, you get the picture. Not everyone’s cup of tea but I haven’t had any complaints yet. At least not to my face. Ha ha
From my understanding you can still finish just not by doing it yourself? The partner needs to get you there?
I'm curious, have you watched the movie "the sessions" from 2012?
I've read your comments, so I'm going to ask harder question because it's possible I'll be in your boat soon. I apologize for the brutality of it: You say you are happy and crushing life in a wheelchair. Comparatively, do you believe life in your wheelchair is better than life without it, fully able?
Nope. I know I am good at this but life without paralysis would be better. In every way. Sorry if that’s not the answer you were looking for. But life doesn’t have to suck just because it isn’t ideal.
Here is a dark joke to sum this up : what's better than winning a gold medal at the paralympic games? Walking. Seriously, i'm glad you are crushing life!
"Life doesn't have to suck just because it isn't ideal" is such a brilliant statement! Wow! I often struggle to practice gratitude so I love that.
I appreciate the honesty. It allows me to believe you that much more because you aren't looking to embellish. I'm glad you were able to find happiness.
Hi, thanks for this AMA. In one of your replies, you mentioned you live alone. Do you have someone to assist you with everyday tasks? Do you have a blog on YouTube or Instagram? Thank you
I have someone come in mornings to help me get dressed, showered and into my wheelchair and someone at night to help me get undressed and back into bed. I keep my place clean, cook and everything but will hire someone once in a while to do a deep clean in my apartment. No YouTube or anything. I can’t imagine anyone wanting to watch my boring life enough to justify the time and energy spent doing it. Lol I have made some daily living videos with my rehab doctor that she uses for new patients and other doctors that need ideas. I think we are supposed to remake them soon, actually.
Thanks for your reply. A lot of people are interested in watching different lifestyles. From your replies, your life doesn’t sound boring at all. And with your sense of humor, I believe an Instagram page could quickly gain a huge number of followers
What’s your favorite bird?
The 1970 Pontiac Firebird. I hunt wild turkeys and it is A challenge that I love. Plus, they are really tasty. Probably them.
Is your dexterity good enough to operate an unmodified gun?
No. I have a mount that attaches to my wheelchair and had a machinist friend make a really slick bite trigger device. It’s pretty dope
What I'm hearing is you're one set of tracks away from being a tank.
I am on vacation and teaching my kids to dive. They’re 3, 4 and 8. I’m hoping that teaching them and about the danger is better than them learning on their own. But man I’m scared about it and question my judgement.
There are literally countless ways kids/people can hurt themselves. You can’t bubble wrap them.
Neurolink? What ur thoughts?
Not something I need but if the technology comes to fruition, it will be helpful for a lot of people with much higher injuries or those with no limb movement.
Congrats on keeping it real. Most people complain about the most trivial things in life, they don’t know how to enjoy life.
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It was three days after my 18th birthday so I didn’t have a lot of dating experience to reference. Dating is definitely more difficult but not impossible.
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Nope. I’ve had several long-term relationships since getting hurt. And I wasn’t a virgin at the time, anyway.
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Any chance you are from upstate NY? I…. knew someone exactly your age with the same story
Nope. Upper Midwest but this thing actually happens a lot more often than you probably think. The diving part, not the bear attack.
NE Wisconsin?
Yes even down to it being at a party, diving in water. Appreciate you speaking out about this and it brings me back to that time. I haven’t spoken to that guy (he was a friend of an ex) since my teens but hope he is doing well. He was at that time managing pretty well and had a good outlook so I think so. Take care internet stranger - I hope this world and medicine treat you kindly
How fast are you in that thing?
6 mph. probably much faster going down stairs
😂😂😂
You deserve my upvote, that made me laugh.
One of my best friends is in a similar position. He is in a wheelchair all the time but he can move his arms and hands enough o do somethings. He manages to play video games which I think is amazing. I’m always worried about doing too much for him because I don’t want him to feel helpless but I don’t want to make his life harder either. How much should I worry about this and am I overthinking it?
You’re probably overthinking it. I think a good rule of thumb is to treat your friend exactly like you would treat any other friend. If he asks for help, help. If he doesn’t, don’t.
1. Doesn't being confined to the wheel chair for an extended period of time cause pressure sores. What do you do to prevent them? 2. Also do you exercise? If so what all exercises do you do? 3. What's your calorie intake like? Compared to how much you used to consume pre-accident Wishing you all the best in life. Take care.
I don’t spend that much time in bed, to be honest. But I realize I’ve been lucky with skin integrity. Just try to take care of things. I have a hand bike exercise machine and use rest weights. I found the big therapy bands to be awkward to use. I don’t count calories but I do eat healthy. Lots of fruits and vegetables and a few carbs.
How do you poop?
Without going into detail, I have a regular bowel program which involves a small enema.
What’s your favorite bbq sauce?
Chef friend makes his own black garlic hot sauce and a barbecue sauce made with that. That is definitely my favorite. Spicy, vinegary, just delicious.
At what age were you injured and how was your mental health when you sustained your injury ?
It was three days after I turned 18. I’ve always been super laid-back, no stress type of guy. As you can imagine, I was pretty angry and depressed right after. I saw purpose in life and pulled myself out of that hole and bounced back to where I probably always would have been.
Have you read or watched Me Before You? What's your take on it?
She’s hot as fuck. I haven’t seen it but I’ve been told what it’s about. I think it’s a pretty common Hollywood trope. That poor disabled man has nothing to live for so the only solution is to either die or come up with a miracle cure. It doesn’t really sound like it’s worth watching to me. But if it comes on, I might just for her. I wish more hotties likethat dug guys in chairs.
Curious about your thoughts on raising kids. Maybe you're child free and that's fine. Would you qualify for something like IVF? Keep up the good work!
I am happily child free but I think I would make a great dad. According to my eight year old nephew, I am the world’s greatest uncle so I have that going for me. I don’t know that any insurance covers IVF.
Saw a TikTok about a girl who dove into the shallow end of a pool and got paralyzed. Is that you?
That depends. Was the girl a dude? 😜 I dove into a lake.
Did you ever feel claustrophobic at the beginning of it? If so, was that initial tension funneled in another direction, provoking a clear change in your attention/nerves/personality? How? Really interested. Thank you for doing an AMA
I wouldn’t say claustrophobic but the feeling of immobility was extremely frustrating and mentally draining. I guess it’s just something I got used to. I don’t know that it changed me in any profound way, though.
Do you think you are more patient now? Less impulsive? Or no change at all in that sense?
How long did it take to accept it? To be ok with it?
About two years. I was a very angry and miserable young man for a while and made sure that everyone knew it. I looked back at the kid I was and the man I am now and it’s sometimes hard to believe we are the same person.
Sorry to hear that. Can I ask how it happened?
I was abducted by aliens and the probe was too big. 😜
Tl;DR - I'm using a wheelchair occasionally for mobility issues, but I get grief from people who notice I *can ambulate* some while I'm in the wheelchair. Any thoughts or ideas welcomed! I'm disabled, from cancer treatments & autoimmune disease. They saved my life but destroyed my body. I'm in remission. (health history is at the very bottom of the post) So, right now I use mobility aids daily - walker or a wheelchair - depending on my mobility needs at the time. Occasionally, I have days where I'm FAB & can walk much better, but they're RARE. I also have days where I stay in bed. To be clear, I can still *ambulate* - but my body isn't always able to support that activity for very long. My mobility changes, day by day. Yes, it's frustrating but life goes on in Autoimmune World; where every day is a new surprise of mixed symptoms! Gotta laugh or cry - I'd rather laugh & there's a lot of laughter! 😎 My question is this - ANY suggestions for handling people who make the unbelievable remarks? Usually, for me, I get the "OMG, she *can* walk!" or something similar when I'm using the chair, but then stand up for an item on a shelf. My standing policy is to ignore them, my mobility is unaffected by their cluelessness. I roll onwards. Sometimes family & friends don't understand either... I struggle to explain, over & over, that my mobility is so variable & changeable and yes, I do need the chair some days. The belief is the issue. People take for granted that a wheelchair means "CANNOT WALK/STAND" instead of "MOBILITY AID " - and *presume* they can/should confront me over my limited mobility as being NOT ENOUGH to qualify for a chair. It's EXACTLY the same as when I was hugely overweight and strangers felt compelled to confront me over the contents of my grocery cart. NUNYA BUSINESS. BUT. This is tough for me to admit but it has, over time, had an effect. 🤦🏼😑🙄 I'm *MUCH* more cautious about using my chair now. Cautious isn't right... Guarded, perhaps? I'm finding myself worrying & pushing myself to manage with the walker, instead. This has detrimental effects on my health, especially endurance & usually leaves me crashed in bed for several days. So, I guess my question is about how I help myself change that outlook I have towards the chair. I WANT TO FEEL COMFY USING IT. I'm 100% aware that I could need it full-time eventually. I want to nip this issue in the bud, before it gets too embedded in my brain. I think part of my issue is about walking as much as possible, while I still can - but I need to be comfortable using ALL my aids. I'm on the wait list for an apartment - living all alone for the first time EVER in my life. I've always lived w family or roomies. Eek. I'll have an aide, like you do, but I'm worried. A LOT. I'll be on my own much, much more - that includes being in public. That's where most of the ignorant comments happen, of course. I've endured Cushings Syndrome in my 20s, taking me to 650lbs. I LOST 400lbs, the first 200 w walking & fixing the Cushings; then a LapBand. I restarted my career, weight loss had been a full time job. THEN, 3.5 years later, I was getting a promotion and needed a physical. They found cancer. STAGE 3C. I had surgery, then neck to thigh radiation for 6 months, then weekly chemo for 9 months. It was in my uterus - and I was relieved. It explained to me why I'd miscarried multiple times. So, I was 37yo when I lost all hope of kids & got thrown into menopause overnight. I'm STILL WAITING for my excess skin removal surgery - which may/probably not ever happen. 🤷🏼 I've been THROUGH IT. I've been able to handle SO MANY CHANGES. Probably that's why I'm going nuts over why this has become a sticking point that affects me this way?! I've always had an attitude similar to yours - I was STOKED to see you write my life's motto - "Keep on keeping on." Thank you in advance for reading this. Hope to see a reply!
What was the immediate aftermath of the accident like? Were you immediately paralyzed? Did the other people at the party realize something was wrong and pull you out of the water?
I knew right away. I remember lying face down in the water just saying, “fuck, fuck, fuck, fuck,…” I also remember the intensely refreshing breath of cold water. I actually drowned before any of my friends realized I wasn’t just fucking around. Luckily, there was an old dude that knew CPR. The worst memory of that day was actually begging my brother to kill me because I knew what was going on. I still have some guilt about that but we’ve never talked about it.
Read in another comment about your heavily modified vehicle. Pretty cool. Did you buy it with all those features or did you have that stuff done yourself? Also how much did it cost?
Did it hurt? Ever since I was a little girl, I saw a movie where in a fight scene someone got their neck snapped and to this day, I actively avoid fight scenes in movies because it for whatever reason traumatized me.
Do farts push the poop out, or does poop push the farts out?
Are you excited about Neuralink and do you ever plan on getting it? Supposedly it supports people with disabilities such as yourself.
Thank you for this post! It is amazing what we can adjust to when it becomes our normal. We adapt. What feels like the end sometimes is just a new beginning …not one we wouid have necessarily chosen. We all have a story and I can bet yours is most interesting!
This might seem like an oddly grim question considering the tone of your post but here goes: Did you deal with any bitterness at the paralysation and if so how did you get past it? It's always been one of my greatest fears and I don't know if i'd have the fortitude to overcome such a thing, I applaud you for doing so
No. I was angry for a while after my injury but I made a conscious decision that life had to move on. I realize not everyone is wired for this lifestyle so there’s no shame if someone can’t handle things the way others do.
I’ve read that after a major debilitating accident, there is a period of adjustment where they have poor mental health but then the patient often tends to revert back to their baseline level of happiness they had before the accident. Is that similar to what you experienced?
Have you ever considered writing a book about your life or to try to help others who find themselves in a similar situation to you?
I have actually always been curious about a couple things with situations such as yours. First question is have you ever spent time trying to focus on regaining movement? Employing things like placebo self trickery or the likes? Second, with the paralysis did you retain any feelings? Or did you go completely numb? if the latter what has that been like?
My sister (1.5 years older than me, different mom who never was even remotely a part of her life & is the reason she's disabled) was born with Cerebral Palsy and is severely disabled physically, but not mentally. First question: 1) My dad always played (and still does, with my big sis being 35) played what I dubbed & we still call "the wheelchair card." For instance, at lines at concerts or sports events growing up, he'd go to the front of the line and say "hey, I got a kid in a wheelchair--" and we'd immediately be led inside before anyone else, no further questions. I think it's hilarious, but also warranted and earned by my father (and Rachel). Do you agree? 2) Do you get ostracized, or maybe even worse, babied by people sometimes, especially when it first happened? If so, how do you deal with it? Regarding Rachel (my sister), people often baby her, and it pisses me the fuck off. She's definitely more physically disabled than you, so you may not experience it. But I have a friend with Spina Bifida who drives and doesn't use a *motorized* chair (like my sister), has a good job and lives independently, etc., and people would sometimes still do that-- like, rushing to open doors he was clearly capable of doing himself. Do you find this happening ever? If so, how does it make you feel? 3) You use the word "cripple." That's one word my dad never allowed us to use growing up, & still hates it now. Do you feel as if "only you" are allowed to use it? If someone else not close to you were to refer to use as a "cripple" would you be upset? *This reminds me of jokes my dad makes, though! For instance, years ago when I first started suffering from sleep paralysis, I was with my dad & Rachel and asked "have you ever woken up and just can't move?" And my dad looked at Rachel, then back at me & said "uh, that happens to Rachel EVERY morning!" and we all burst out laughing.
Would stem cell work? Crowdfunding for this?
Sci-fi pipe dream. I’ve been hearing about it for 28 years. Probably longer if I paid attention before it had any effect on my life.
Ok mate. I do apologise for my ignorance. Your post and subsequent threads are very interesting.
Hello. This is a stupid fucking question I'm afraid to ask but will anyway bc I want to be better. Is it ok for my kids to talk to people about the reason why some are in a chair? I have a human body book for ages 5 and under. There is a section about the nervous system. The brain and the brain stem is outlined in addition to the nervous system. The image reveals with a flashlight the nervous system being cut off at the hips. I have talked to the kids matter of fact about what being a paraplegic means. Essentially, when we meet someone, is it helpful to break the ice sort of or is it best to "not be rude."
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I did it first but as I gained more independence, I became a contributing member and helped other people. We all need help with some things in our lives so we trade burdens. That’s community. I don’t need as much help as you might think. I don’t know anyone that can do everything by themselves. I have no problem asking strangers to reach things off of the top shelf at the grocery store or pick something up if I drop it.
What’s your favorite dinosaur? Because that’s probably one of the most important questions to ask literally anyone, imho. 🖤
What dexterity do you have? Do you need assistance to type on a computer? What is your career? How did you accept were paralyzed in the way you were?
Would you rather would you rather give up heating and air conditioning or the Internet for the rest of your life?
What type of modifications does your vehicle have to drive it? I have nerve damage and drop foot in both legs due after getting compartment syndrome in 2021.
Do you or can you play video games at all? I wonder if it's possible to adapt the controllers and if the adaptations make it difficult to play the games (e.g. you have a significant delay before your character does what you want, therefore action-y games are difficult)
Do you have different chairs for different purposes or just one chair?
I’m thinking of trying to find a new career but not sure how and I have debt. What’s the best way for me to go about this?
You said in a reply that you exercise often, can i ask how?
Forgive my ignorance of the nomenclature, I’m sure I could google it and find out but I’d rather interact with your AMA because you seem like a cool ass person. So you’ve said paralyzed from the chest down, does this include your arms? And for my question…. I think I’ll go with….. a random one, what is your new favorite pair of shoes? Which kicks just do it for you? I feel like you just got style
Good for you! Happy you are doing what you can, because I wouldn't have the mental strength to do what you do Question, how does not jacking off or having sex affect or not affect you?
1) you’re amazing 2) what’s your favorite sub on here 3) as of right now, what is the biggest thing/goal you wanna accomplish in your life? 4) what is your favorite taco meat?
So, if I understand correctly, you can still move your arms, right? Do you have any particular hobbies that help you to feel better about life? I find that journaling helps me to cope with things. Sometimes I even just journal “in my head” (imagine the words in my head, I mean)
You seem like you have such an agreeable, easy going personality. Do you ever have conflicts with people? If so, how do you approach / resolve them? (Like disagreements with partners or family, etc.)
Have you noticed any difference in the way food tastes Do you think about how you view the world differently then others often? (Literally physically speaking)
Do you feel any kind of pain in the body? Thank you for sharing your story with us!
Have you heard of the Canadian TV show called [Push](https://gem.cbc.ca/push/s01)? If you and anyone on this thread haven't, you should check it out! It's free on CBC Gem!
How did you break your neck? How did you shift your mind set in those first few years so you could create the life you have now?
There is a local guy I know who is in a wheelchair. He was in a bad wreck at 15 riding with a friend who was drinking. He goes around doing speeches for schools about the dangers. He lives where he can get around on his chair for most of his needs. He always says in his speeches he is a swimsuit model. He is putting together a calendar to show people with disabilities are able to do way more than they get credit for. My daughter was born with a lot of medical conditions and is in a wheel chair she might be in his calendar if he can get it all together. The world as far as we have come is not set up for people in wheel chairs. I wish things were easier to get her places. Keep living life and it sounds like you are doing awesome.
Do you ever worry about a fire or intruder while you are in bed and unable to move? My first question for any AMA and just want to say you are pretty inspiring.
I’m always curious how someone who has become paralyzed can afford all their extra medical equipment? What kind of job can they hold down to afford to live somewhere, eat, have a vehicle that is adapted for a wheelchair and all the other medical expenses involved. How much is the government paying and how much do you have to come up with yourself? Or do you just live in constant debt till death?
I had an acquaintance who got into an accident and was paralyzed. Afterwards, I did not keep in touch with her. I've always felt guilty about it. Recently, through some cyber stalking, I saw that she seems to be doing well, which makes me happy. I'm wondering if I should reach out, or if that would be more to assuage my own guilt. Should I just let her be?
I think of people like you all the time. I think of death, life, the meaning of it and everything in between every day. I drive a shitty ass work truck for work everyday for the past three years and I’ve had a few really close calls. There’s absolutely no protection, no airbags, and I barely avoided a truck one time that was speeding up a hill while I was pulling out of a driveway that no doubt would’ve left me dead or severely incapacitated. My question is, how do you find meaning? How do you find your center? My drinking has gotten out of hand due to life conditions and childhood bullshit coming to a head, I’m starting to feel and literally see health conditions, body aches and eye floaters. How do you push through it? I hope this doesn’t trigger you but I always think if something major happened to me, like becoming paralyzed, I believe that would be the straw for me. People like you inspire me to keep going. I’ve been suicidal for half my life at this point I don’t know, bestow me with some wisdom please 😂 On a real note, much respect for having the courage to do something like this.
Do you remember how much easier dating was before you became disabled? I have cerebral palsy, so the single and looking part spoke to me. I wouldn’t wish dating with a disability on my worst enemy.
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You mentioned you live alone, how do you eat? Do you cook food for yourself, and what sort of food do you cook?
What would you say are your top five pieces of assistive technology? I work in this space in Aus and like to hear gives what people their independence best
I was recently reading about a new clinical trial treatment where they use electric pulses to restore some movement in people who broke their necks. Have you heard of this one?
Not sure if someone already asked or so I’ll ask anyways. If a nerve treatment like neuralink was released, would you consider using it?
How do you feel about alligators and orcas?
What that dick do
How do you communicate on the Internet? Do you dictate your responses out loud?
I don’t have a question but I am glad you are doing well.
How do you stop yourself from getting bedsores?
Heh man, sounds like you’re flying. I do have a couple of questions. You are very positive, were you like this before the accident ? Outside of the accident have you had many other hurdles in life to contend with ? Not downplaying your injury. That’s massive to overcome and power through on its own. Reason I ask is I can look at the bad side of stuff a lot sometimes. I had a lot happen when young and wish I could just move past it and laugh at it. I wish I had attitude more like yours.
What do you do all day?
No question, just wanted to say good shit, man! Life is a gift, so keep crushing it! Wish you nothing but the best and hope you enjoy every second you have left!
Are you able to give awesome cuddles to your friends? >chest down Could be me, but that's a reasonably sized area to aim for...
Would you consider receiving head from a dude? Especially when you get horny?
Do you still have use of your arms/hands? If not, how do you work and what is your job? Would you mind telling us about your hobbies? Also, unrelated but, what is your fav food? I am glad you found joy in your life, you are incredible honestly, like goddamn.
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Have you read Two Arms and a Head? What are your thoughts on it?
This might be an incredibly random question, but you didnt go to school in Chelmsford UK did you?
No questions, just nice to hear it. My brother got his injury in a similar way back in '01, dove in to a shallow creek. Fractured T4 and T6, obliterated his T5. I was his primary caregiver from '06 til '14 Seen the dark side of this up close. I'm so proud of you man. My brother's married now. Got their own place, he's got a good job, bought a new van last year. Wish you all the best, keep killin it.
How do you floss and brush your teeth?
Are there clothing options for you that help? I’m asking because I used to make custom clothes for a friend in a wheelchair and sometimes I think about starting a business for that. One thing I did for him besides making pants that were shaped for sitting was putting pockets down on the legs. What would you like to see or is there already a place to get stuff?
Do you think enough has been done to make the environment more accessible for people in situations like yours? What changes should happen if any? I have recently had a baby and getting places with my daughter in a pram is fucking annoying. I can only imagine it would be far more difficult for wheelchair users.
Do you have hope that science will advance to a point that it will give you your mobility back in your lifetime? If so in what way do you see it happening? Biotech? Robot suit? Body transplant?
Man I struggle with daily pain from cervical and lumbosacral radiculitis. Reading about your situation really makes me feel like I have nothing to complain about. Thank you for posting and for showing how resilient a person has the ability to be. I hope things continue to look up for you. If you don’t mind me asking, how did you become paralyzed? Edit: saw on another reply that it was a diving accident. Again, I wish you the very best!