IamA 30-year-old quadriplegic after breaking my neck 11 years ago. AMA!

This might be a silly question, but in your dreams are you moving, running, walking, all those things?

Actually, yes. In most of my dreams I am still upright and walking. Every now and then I will have a dream where I am sitting in my chair, but even then I'm not necessarily restricted to it. I recall one dream a long time ago where I was driving around in my chair, but then I encountered some steps. I got up and walked since there was no way around. I'm not quite sure what that means.

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Or maybe my brain still has 19 years of experience in "walking mode" and 11 years of experience in "wheelchair mode"

No, that can't be it.

Yeah its definitely gotta be some motivational shit.

Especially if this was some sort of Upworthy video.

What is something relatively simple you wish was invented to help you?

Something to help me: Driving modifications that don't cost a fortune. For my level of injury, driving controls can cost $50k. That's on top of a modified van that already costs $40k-$50k.

Something for fun: Rocket-powered wheelchairs. I want to go fast.

In college we had a friend that was wheel chair bound due to a rare form of muscle dystrophy. We sooped up his wheel chair so it would do 80 in a straight line.

Video or didn't happen.

I second this.

Do you have any sort of sex? If so, how? Any feeling whatsoever in terms of an orgasm, even if you can't feel it physically on your organ?

I have all kinds of sex.

Ha ha… Just thought that was the best way to answer it. Anyway, to answer your question without fully turning this into a NSFW thread, sex is still possible for someone in my situation. For me, it takes a little more assistance from the woman and a little more creativity. Even if it doesn't feel exactly the same on my organ that doesn't mean it's not fun.

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kinky

she's not a thing, dude. she's a person with feelings

Just not in her legs.

I love reddit for all the dark humor.

Fantastic answer. All kinds of sex is the way to be! Do you still have any sensation? Or is it all mental?

Thanks for doing this man! Great AMA.

In general, I have no normal sensation below my level of injury (my shoulders). However, on my left side I have some dull sensation all the way to my toes, and I have sensation down to my hips on the right side.

Have you seen the movie The Sessions?

I have not. The IMDb summary sounds… Interesting.

could anyone elaborate on what the sexual activity/feeling is like? I always hear they can have sex "in their own way" or something vague like that, but i'm never quite sure what that means.

also, can we not say "organ"? it's weird.

For me, it feels like I have 10 condoms on. You might say, "Oh, that sucks!" But come on, you know sex would still be exciting.

Nice work on the degrees! I'm a C5 quadriplegic, and have been for 13 years. I earned my PhD last year, and have a tenure-track faculty position at a state university.

That's great to hear! Do you enjoy it so far? I have thought about teaching, but I am enjoying my work right now. Did you have to come up with any new modifications or adaptations after becoming a professor?

How has it affected the relationship with people that you knew before the accident? Do they treat you any differently?

Great question. I had just finished my first semester in college when I was injured. It was still close enough to high school that I was in good contact with my high school friends, but I also had a lot of new college friends. Some of the people that I knew before my injury became less communicative. Maybe they didn't know how to react to such a huge change. The majority of my friends were amazingly supportive. I really felt like they understood that my personality hadn't changed.

If anything, the injury helped me find out who my best friends were, and it served to strengthen our friendships even more.

I've noticed that most people drift apart from old high school friends (just like I did). There is only hand full of high school friends that I still hang out with all the time. So it might not be due to your injury, everyone moves on to different things after high school.

I've thought about this a lot too. Many of the high school friends that I don't hear from anymore is mostly due to the natural drifting apart that happens when high school ends.

Can you still feel pain or discomfort from a stomach ache or intestinal pain? If you ate too much in one sitting could your feel that you're full?

Not necessarily. Sometimes I think I feel stomach discomfort through what's called "Autonomic Dysreflexia". I get a rise in blood pressure due to anything that is irritating my body below my level of injury (where I can feel). It is something that would otherwise cause pain, but my blood pressure goes up instead which causes flushness feeling in the face and sweatiness.

This is not a question, more of advice.

I (a male) dated a quad (female) for several years. She was C5 from a car accident before I met her. It was tough. I did my best to help her to forget her disability. We'd go to amusement parks and I'd carry her into the rides and strap her in, I had friends help me strap her onto the back of my motorcycle, etc, etc...

But it didn't work out. She burned me out. I became over time more of her personal nurse than her lover. I was suffering from sleep deprivation because every two hours I'd have to wake up and turn her in her bed so she wouldn't get bed sores. I'd go to bed an hour after I got her in bed (a routine that lasted about an hour) and her morning routine required me to get up half hour before her and spend two hours getting her ready.

I tried to mitigate "the work" but she wasn't helpful. For example, I asked her if we could just shower her every other day to save me an hour, and she freaked out on me. I wanted her to hire a nurse one night a week so I could sleep in my own apartment in my own bed, and she guilt-tripped me about needing time away from her.

Or the times I'd ask her if she could go grocery shopping without me so I could nap. Admittedly that was a lot harder for her (she had her own modified van) because she'd need to get staff at the store to help her and load up her van, but I desperately needed the sleep and she couldn't understand that a bit more hassle on her part would be very helpful to me.

The final straw was when she admitted to me that if she wasn't disabled she would have never hooked up with me (she was drop dead gorgeous before her accident and still gorgeous after it and I guess to her I was just "average.")

I finally had to walk away, which was quite a bit harder than saying "fuck it, I'm outta here." I had to figure out how she was going to get care (she lived alone before and after her accident). Government social services suck. Thanks to Easter Seals she got supplementary care on top of her minimal work-provided health insurance, then I split.

So my advice is, treasure those around you who love you and are willing to help and do everything you can to do what you can on your own so they don't have to do it for you -- even if they are willing. You have to basically make sure they don't burn out too.

(ps, yeah, I still feel horribly guilty about it, like I could have done more if I was stronger....)

Thank you very much for sharing your experience. One of the lessons I learned in rehab was that you should leave some distance between those you love and your personal care. While it's important that your family, SO, spouse know how to help you if needed, but it can weigh very heavy if your family is your full-time care. At the time I didn't really have first-hand experience, but now I really see how it is important to not rely on your family for all your needs. As you said, it can be very exhausting to be providing help morning, night, overnight, and throughout the day.

I'm sorry to hear that it didn't work out. I think you had every right to walk away. All the best to you!

I hope this doesn't sound ignorant, but I know so little about this sort of thing. How do you perform certain necessary daily tasks that typically require large body movement? E.g., getting into/out of bed, showering, eating. Do you have personal assistance or do you use technology?

I have personal care assistants to help me every morning and night. They physically assist me with getting in and out of bed, stretching, hygiene/showering, and dressing. At first it seemed like a real invasion of privacy, but you get used to it.

At first it seemed like a real invasion of privacy

Or you could just consider yourself royalty. The elite of Europe never used to bathe or dress themselves. That was for peasants!

Edit: 450+ internet points? where is my gold, peasants!! Someone guilde me!

I feel like Eddie Murphy in Coming to America sometimes.

The royal penis is clean!

My thought exactly.

That's what I thought, but I wasn't sure. Thanks for your response. Also, I think it's great that you got your PhD and landed what sounds like an awesome job.

Nice username BTW!

What is your job, exactly and what do you do for fun?

I work for a large company (10,000+ employees), and I am a research engineer. Luckily, my job can be done mostly with computers. Technology has many amazing adaptations to let people with practically any disability have access.

A perk of being in a wheelchair is getting handicap access to venues and events. I love going to movies and concerts. I was an adrenaline junkie before my injury, so I still like watching skiing, mountain biking, etc.

I bet the Oculus Rift would be great for you. I've ordered a Dev kit 2 and was considering making a snowboarding game.

I wonder if I could build a sensor in to it to allow you additional control. I would like to know more about the equipment you currently use for work.

Argh! Millions of ideas just hit me and I have rainy cycle home to think about them. If you want to discuss this, let me know.

I keep hearing about the Oculus Rift, but I don't know much about it yet. There are definitely a lot of cool devices that are being developed. Many things aren't specifically developed to help people with limited mobility, but they just happen to help people like me!

Personally, I can't wait for Google cars.

Have do you manipulate the computers?; if you don't mind me asking.

My friend is wheel chair bound, and one summer he had this great idea of tying his chair to a ATV and other dangerous things for "summer fun".

I have enough movement in my arms to use a trackball. It took a lot of practice at the beginning, but it's a lot easier than trying to get to the left and right click buttons of a mouse.

I can slowly type on a keyboard with one of my knuckles, but I usually use voice software for typing. I've been using Dragon NaturallySpeaking for the last 11 years.

I use MouseKeys on my wireless keyboard for all mouse functions. I find it easier/faster than a trackball mouse and/or Dragon.

I haven't heard of that before. How does it work? Do you press specific keys on your keyboard for up, down, left, right, left click, right-click, etc.?

Have you see the mice controlled by your eyes? I don't know much about them but I looked them up once in hopes of becoming a FPS god or the equivalent of using a mouse keyboard on the Xbox. It's still pretty new looking technology but I imagine it could potentially be quite useful for someone with difficulty using a standard mouse.

I have a friend who has the same level of injury, but has practically no arm movement. He wears hats that have reflective "beacons" on the front, and his computer uses infrared to track the beacon and move his mouse. Pretty cool stuff.

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I don't think you could have asked this any more professionally. I have never had desire to recreationally experiment with compound, but I have been curious about how it would medicinally affect me. I have muscle spasms that I need to take medication 4x daily, but cannabis is rumored to be very effective as well. For now, I have no intention of inserting it into my drug regimen.

Hoping you see this. One of my best friends in high school recently suffered an accident similar to yours about three months ago, he was snowboarding and broke his C7 after landing wrong. He has control of his arms but I believe he is still classified as quadrapaligic(sp). I'm going back home this summer and I'm hoping to see him frequently, the problem is that we were extremely active in our friendship together. Always hiking, swimming, biking or whatever. I'm not concerned that our friendship will suffer because he is no longer able to do these things, we are friends because he's a cool guy not because I needed a hiking buddy, BUT I'm genuinely nervous to see him because I'm not sure how to treat him. Should I ignore the wheelchair and pretend like nothing changed? Do I treat him carefully and try to cater to what he needs? I feel like if I completely ignore it he'll feel like I want to go back to "normal" and I definitely don't want him to feel that way. Can you give me some advice on how I can be the best friend I can be to him?

TL;DR: My good friend was paralyzed recently and I haven't seen him since before it happened. What is the best way act around him to make him feel comfortable when I go back home for summer?

My best suggestion would be that you shouldn't think about it too much! It sounds like he should be far enough from his injury that you don't have to worry about treating him to gingerly. If you guys are joking around, don't be afraid to give him a slap on the shoulder, or anything that may have been the norm before he was injured. I'm sure he's considered the fact that many of his favorite activities are now impossible, but you might think about asking him whether he's looked into modified forms of the same activities. He has a low enough injury that he might get into wheelchair biking. Or maybe find accessible parks to go hiking in. He will definitely want to stay active, so he'll enjoy looking into ways that he can still do that!

This might sound stupid/ignorant (so my apologies), but how are you answering this AMA?

Do you mean how am I physically typing these answers? I use voice software for typing, especially when writing in full sentences.

do you find that having to speak to type makes your every day chit chat more articulate and well pronounced? There's no room for an "um" or an "uhhhh" with this kind of typing, is there? I bet you're good at giving speeches...

I find that I don't generally type in long, flowing sentences. Instead of making my every day chitchat more articulate, I think that my speaking for the voice software has become more casual. I know exactly how I need to talk to get the proper enunciation, and it's not quite as robotic as most people think.

I don't know what program he's using, but we use speech rec in a professional setting where I work and it can filter out "fluff" words like that :)

I use Dragon NaturallySpeaking. It's not great at filtering out extra noises that the user makes, but using a unidirectional microphone helps a lot to filter out background noise.

How do you correct typos with that software?

I like to go to the store oh fuck nuggets a WASP, I MEAN SHIT, FUCK NO DELETE THAT LINE, PLEASE DELETE THAT LINE

Just like this!

I have a church friend with the same chair and condition. Why does he sometimes tilt the chair back for a little while and then straighten it again?

You can imagine sitting in a seat (In a movie theater, church, etc.) for a lengthy period of time. You start the need to shift side to side because you get uncomfortable. Your skin is telling you that you've been sitting in one spot too long, and you need to shift your weight. As a quadriplegic with limited arm mobility, I can't physically move my weight to get the same shifting. I don't feel that I need to shift my weight, but tilting back every 30 minutes ensures that I don't get pressure sores by sitting upright for too long.

I am so proud of you and I don't even know you. Your attitude and energy serve you well :)

Thanks so much!

I hope this isn't a stupid question but seeing as you said you've had some neurological recovery, do you have any control of your hands? How do you use a computer?

Good question. Immediately after my injury, I had no movement of my arms. I could just shrug my shoulders. When I was pushed around in a wheelchair during the first week or two, I would need help repositioning my arm if it fell off the side of the arm rest. I didn't have the strength to lift my hand back to the armrest. I regained mobility mostly in the first two years after my injury. I now have use of my deltoids (shoulders), biceps, and my wrist extensors. I can't move my fingers at all. The hands and triceps run from nerves that are the lowest in the cervical region (C7-T1).

Can you achieve some kind of sexual gratification? Orgasm? [serious]

OP said

"I have all kinds of sex. Ha ha… Just thought that was the best way to answer it. Anyway, to answer your question without fully turning this into a NSFW thread, sex is still possible for someone in my situation. For me, it takes a little more assistance from the woman and a little more creativity. Even if it doesn't feel exactly the same on my organ that doesn't mean it's not fun."

Answers your question a lil bit

Thanks for taking care of that!

Hi, thanks for doing this AMA.

I hope you don't take this the wrong way, because you are a truly inspiring person, and what you have achieved after your injury is fantastic, but my question is this:

Do you think that being disabled has in any way helped you achieve what you have? For example: would the education you received have been as accessible if you hadn't suffered your injury?

Again, please do not take that the wrong way, I'm just genuinely curious!

Thanks for the compliment. In my experience, the education I received wasn't necessarily only open to me because of my disability. However, I was fortunate enough to receive a scholarship when I returned to college. The scholarship was specifically for disabled students. My college didn't offer very many academic scholarships, so I wouldn't have received a scholarship it wasn't for my injury.

I do think that my injury helps point out skills that would have gone unnoticed otherwise.

As someone who loves skiing, can you describe your accident more? How could you have prevented it?

Something that's always in the back of my mind while racing down the slopes is what could happen if I fell.

Don't let my injury stop you from skiing! My injury was definitely a fluke, and there probably wasn't much I could have done to avoid it.

I would have classified myself as a moderately expert skier. I could ski down any run, though it wasn't always graceful. A ski run wasn't fun unless it was deep and fast. On this particular day, my friend and I were skiing through the trees to get some powder (skier gold). We neared the bottom of the run, so we had to hop back on the regular ski run to get back to the ski lift. It was a blue/intermediate run, so it was straight and moderately flat. There were a few "lips" where we could get a few inches of air. It was my first run of the season, and before I knew it, I had tumbled forward and my head was between the snow and my chest. I think that my legs were weak from not being fully into ski season yet. When I stopped sliding along the ground, I was on my side and couldn't move anything.

Any plans to ski again? (Monoski/sitski)?

Now I can't stand cold weather. Reduced circulation is a consequence of spinal cord injuries. Not only is sitskiing completely different, but the cold weather would make the fairly miserable.

What was the first thought that crossed your mind when you realised the seriousness of your injury?

On a side note, your courage and will to live is way way more than admirable!

Thanks for your kind words! Honestly, I didn't realize how serious the injury was for a while. I broke my neck on a ski mountain, and it wasn't until I was in a helicopter on the way to the city that I realized that my sensation and movement might not come back. In the hospital all I could think about was how much my head hurt because they had me strapped down on a backboard with a neck brace. When the doctors took me into surgery to stabilize my spine, I remember telling my parents, "I'd give you a thumbs up if I could!"

The point of all of these anecdotes is that I never really had a sudden moment of realization that I would never walk again. It hit me gradually.

This also happened to a friend of mine. He fell off a cliff and broke his neck as well and is now a quadriplegic. I went to visit him before and he seemed very pessimistic about his future. Saying things such as "I can't do anything with my life" or "no one will be able to support my mom when she gets old". I tried to cheer him up by suggesting there are still many things he can do if he strives for it. I understand why he is very upset and down. I am not in his position so it is easy for him to shoot down my support. I want to be a middle man between you and him. What would you say to him if you were in the room with him that would help him to help deal with his situation?

Show him this AMA. This guy is so amazingly upbeat and positive in light of what many would consider a life-ending travesty that your friend will be hard pressed not to reevaluate his own outlook.

Thanks! While showing your friend examples of people who have been successful won't necessarily give him a roadmap for his own success, it could help to show him that he will still be able to do something that he enjoys. And even though you can give him his answers, it's great that you're still a supportive friend. He deserves a grievance period, but it will also be important for him to move on at some point.

How were the hospital bills? Did your health insurance help at all?

The initial bills? They were outrageous. I think the total cost of the full year after my injury would have been about $1 million if I had no insurance. Luckily, I did have insurance! Yes, insurance helped immensely.

Is there anything that's better or easier about your life now that you're a quadriplegic? I hope that doesn't sound insensitive!

Getting up in the morning is a whole lot easier. Instead of having to wake up to a nagging alarm clock and roll out of bed, my personal care attendant/caregiver shows up in the morning and stretches my legs for 20 minutes before moving on to getting me dressed and moved into my wheelchair. If it weren't for the fact that I can't physically do these things for myself, you could definitely call me lazy.

Do you have an SO? If so, did you meet before or after the accident? If not, what is dating like?

I don't have an SO at the moment. I dated on and off through school. I definitely found it difficult because my self-confidence and "machismo" before my injury was already sub-average, so I found it difficult to ask women out. Though many women might not care, it's hard not to be self-conscious about things. Sometimes it can also be difficult to come up with creative dates that are both fun and doable for both of us.

Nonetheless, I do date because it would be nice to find someone to settle down and have children with.

Are the people that you date able bodied?

Yes, I have always dated able-bodied women. Many things get a lot harder if both people are in a wheelchair!

Well, i can see that. Would be really strange having one or two nurses around helping things get done between 2 quads.

Wasn't there a Family Guy with Stephen Hawking in bed with a woman who was also wheelchair-bound?

If you could be fixed, would want to be?

Is so, what do think of those who wouldn't?

What are your qualifications in?

I would want to be "fixed" there was no risk of serious complications or making my injury worse. Even if there was a way to just recover the use of my hands and improve the strength in my arms, I could be more independent and be more productive.

To each their own. Some people feel like they have become better people after a serious injury, and might not want to recover fully. Though IMO, you'd be crazy to rather stay in a wheelchair if there's no risk in getting fixed.

Both my degrees are in chemical engineering.

What sort of impact, negative or positive, has this had on your mental health?

I don't imagine it's had any net positive impact on mental health compared to before my injury. I definitely have bouts with low levels of positivity when things aren't going my way, and everyone probably has similar feelings occasionally. Sometimes it just feels like you're in a rut, or maybe that you're never going to accomplish a specific task.

tl;dr I generally try to stay positive, but it's hard to avoid being down every now and then.

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My mindset has always been something along the lines of "just go with it". I was fortunate to have just started college when my injury happened. I took a semester off to go through three months of spinal cord injury rehab, and then I returned to school. I hadn't made a big deal out of it, and I didn't preach about how it was my goal to graduate with my bachelors degree. It was just that returning to school made the most sense! I enjoyed the program and my friends, so why wouldn't I want to return back? In the long run, I realized that returning to school really was best because it got me back out of my parents house and it helped me feel like a "real person". The school was not used to dealing with people in wheelchairs, much less quadriplegics. So every modification that was made for me was new to everyone. So I never got "babied" by being given excessive adaptation.

Sorry, I've babbled. Basically, being with friends who supported me and doing something that I cared about helped me to move on. I never had a chance to wallow in self-pity because I was still living my life.

What technologies in the area of helping people with your injuries excite you? Do you keep up to date on them and what is happening in that sector?

Google! Google cars and Google glass are both interesting to me. A lot of wearable technology that interfaces with smartphones can be great for someone like me.

Who would you count among the most inspirational figures in your life? Did you find that these were different before and after the accident?

By this I mean, did you find yourself looking up to different people for different reasons after you were injured?

The most inspirational people are the ones around me. My family has been extremely supportive, and they are all successful in their own ways. My parents and my siblings continue to inspire me to stay positive and live the fullest life possible.

I know many people develop a dark sense of humor (or, more aptly, apply their sense of humor to their own dark situations) over time. Have you ever thrown people off by joking about your condition, or even offended someone (like someone else in the physical rehab center, etc.)? Can you think of the darkest or most unexpected joke you've made?

My favorite: Who is the opposite of Christopher Reeve? Christopher Walken.

Hilarious!

The parasympathetic fibres responsible for sexual arousal originate from S2-S4. Does this mean you cannot be sexually aroused? Or are you able to achieve an erection with the help of medication? If you can achieve an erection, are you able to orgasm?

I can definitely still be sexually aroused… Both mentally and physically. However, the mental and physical arousal are very separate now. I don't achieve an erection by mental stimulation, but both physical stimulation and medication get the job done. And yes, I can orgasm as well.

Both erections and orgasms are very individual to each person with a spinal cord injury.

Do you now or did you have a SO at the time of the accident and how do/did they deal with it?

I don't have one now, nor did I have one at the time of my injury. I've seen it go both ways for people I've known who had an SO when they were injured. For a select few it makes their relationship stronger. For many people, the injury eventually drives them apart, sadly.

Who's your favourite band? Do you still headbang if it's a heavy one?

Heck yes. I liked rock when I was growing up. Nirvana, Pearl Jam, Incubus, Linkin Park. And yes, I still head bang to worthy songs since it's something that I can still be perfectly :-)

Any intimate relationships on the horizon?

Time will tell.