I was paralyzed from the neck down. I will never turn my head again. I ride 1500 miles a month. Ask me about surviving hell.

You ride what 1500 miles a week?

A bicycle. 1500 a month. 350+ a week.

That's insane!

Like I said. I have a problem.

You got the high of life...

Ride it

Yes, sir. Endorphin junkie for lyfe.

a first world problem...

White male problem.

Is it more difficult to be aware of what's around you while riding, such as oncoming dangers, since you can't turn your head?

The body's capacity for adaption is remarkable. All of the vertebrae below C3 are hypermobile in my neck, so I can sort of turn my head in a downward arc. I actually use my shoulders most of the time. I can't drive because moving my shoulders to look around would endanger my ability to steer, but on a bike, I can stay largely stationary. I just pivot my entire torso to look around. It's kinda like doing Down Dog, and probably looks really odd to people.

Also, years of riding in heavy city traffic (Boston, MA, US) has really honed my situational awareness.

Are you using mirrors on your bicycle? I think that would help a lot with awareness.

No. My spine is super flexible. I can actually turn my entire torso to look behind me in a "shoulder check." Plus, in the position I'm in on a bike, the remaining vertebrae in my neck permit just enough movement that I can look downward and back.

Or even better, use while driving. Had a surgery a while back where I couldn't move my neck for months. Just bought every mirror I could find at Auto Zone, had my wife test to make sure I didn't have any blind spots and I was off.

I'm a shitty driver. I'm not afraid to ride full speed in rush hour, but I was scared to death to drive in suburbia (when I did drive). All I could think of was the 2000 lb death machine in my hands.

What is that about 2-3 hours a day 7 days a week?

60 miles a day, 7 days a week. 3-4 hours, depending on the terrain.

Did you ever have thoughts of suicide? If yes, can you tell us a little about that?

Of course. I remember one night in winter 2011 when I tested the height of a doorknob with bathrobe sash around my neck. It was hard, the first year, knowing I was broken in a way that would never heal, never improve, and never disappear. Being unable to turn your head is a weird thing - the social cues are confusing to people, and it makes dating awkward. But I had good friends who helped me realize I could survive.

Honestly, I kept going because I had no choice. I couldn't stop working; I had bills, student loans, a job. I couldn't abandon my life and live on disability, and suicide is really difficult (I'd tried years prior). I suppose the feeling that you're forced to be alive is worse than wanting to die, because you have no way out.

Another question, what are/were you studying?

Edit: grammar

Not a student.

Then why the student loans?

I was a student, years ago.

Ah, I think /u/DionKr spelled "were" wrong, what were you studying when you were a student back then?

I have Bachelor's of Fine Arts in creative writing. Poetry. (HA!)

I'm finding it difficult to grasp why you were unhappy when the alternative outcomes to the one you got are so much grimmer. Could you explain why you focused on your loss rather than your good fortune?

I read your description and thought "This guy mustn't be able to wipe the smile off his face" - you should be dead or so totally paralysed that you couldn't even breathe on your own, and the only thing it cost you was neck mobility and some nasty rehab. From my perspective, that's a gift, not a burden.

I don't mean to be cruel or unsympathetic, I just don't understand why you responded the way you did.

It is a gift. But I'm also hyperaware of the fact that there are 10 3-mm screws shoved into my spine, sitting a millimeter on either side of my cord. Everything I do in life, everything I am, comes from that moment of paralysis. I focus on the loss insofar as it's motivation.

I don't claim to have suffered like any of the people in this thread who are SCI complete. Sorry if that's how I come across.

If someone calls for you, do you move around like Micheal Keaton's Batman? Thanks for doing this AMA!

More or less. If I'm around a group of people, I don't stop moving, so that I can look at them all. I don't like sitting at bars because I can't talk to the person next to me.

Most of the time, people don't notice I can't turn my head. The only people who comment are trained to notice dysfunction (therapists, doctors, etc.) I'm very graceful on my feet, and most people mistake the disability for personality (i don't look at people) or a love for dance (which I don't actually have.)

Congrats on an excellent recovery! I'm a T1 complete from a dirt bike accident myself.

What was your sensation/movement like at first, and would you attribute your initial survival to having a good helmet?

Damn, friend. You have my sympathy. Anyone who's complete is a bigger badass than me.

Sensation from the paralysis, or after surgery? I've never talked to anyone else who's been quad, but all I can say is the feeling of quad is "quiet." I honestly didn't know I was paralyzed at first; I thought I just had the wind knocked out.

Post-surgery, I was pretty ok. My scalp is still numb, and I had a lot of numbness in my arm because of the nerve damage, but that resolved itself.

Yes, and no. I literally did a swan dive and impacted the crown of my head, so my helmet was split in two. Same method of injury that kills people in diving accidents. The force transferred directly down my head to my spine and crushed the vertebrae into 4 pieces. I survived by luck and because years of riding had strengthened my cervical muscles to the point that they could hold the fragments in place and not sever the cord itself.

I'm paralyzed from T11 down complete due to a non-traumatic disorder since age 12. I'm now 41.

You're incredibly lucky! Any residual numbness or pain, weakness?

Nope. Nothing. As my neurosurgeon said, someone up there loves me. He was shocked I didn't have a stroke.

Hi. Thanks for taking questions. I was wondering do you have much pain? If so, how do you deal with it? Were you diagnosed with Spinal Cord Injury? Thanks again.

The pain in the injury itself (and surgery) lasted only a few weeks. Again, I was lucky - the paralysis was temporary and pressure-based; no lasting SCI.

However, the surgery severed my spinal accessory nerve (innervates your trapezius and serratus). The palsy atrophied those muscles completely, so I was in pain for years until the nerve regrew. Fortunately, I have a really high pain tolerance (redhead). I have this unfortunate immunity to opiates, so all i could take was ibuprofen.

The tolerance is also due to being a redhead :).

A gift and a curse.

What happened? Did you get hit by a car or what?

Tried to jump a curb to avoid a car driving the wrong way in my bike lane. Didn't clear the curb, and flipped like a missile straight into the sidewalk.

Were you wearing a helmet at the time? This in general is my worst fear cycling downtown or in rush hour.

I would not be alive if I wasn't wearing a helmet. When I finally got the helmet back from my friend (who took my bike when I went to the hospital), the helmet was split in half.

The thing they don't tell you about helmets: Helmets (as we know them) are really only designed to mitigate shock to the brain. You can still die from cervical trauma, and the helmet does nothing to mitigate glancing blows or axial compression (which is what broke my neck).

TLDR: Wear a helmet. It won't guarantee your safety, but not wearing the helmet is far more dangerous.

What was the most difficult/frustrating thing about adjusting to this extremely sudden occurrence?

My mom is a social worker for the VA, and she once had a patient who was paralyzed from the neck down. IIRC, he was lying on a dock and put his head back into the water, and the moving current paralyzed him from the neck down permanently. I can't imagine all the trouble he must've had adjusting.

The powerlessness. Knowing there was nothing on earth that I could do. Fearing the sensation of being broken forever.

shimano, sram or campy?

Ultegra Di2. I don't have the cash for Dura Ace, but for my money, Ultegra is awesome.

Dollar for ounce nothing beats ultegra.

Agreed. The difference between 105 and Ultegra is marked. Between Dura Ace and Ultegra? Partially vanity, partially truth.

How do you keep your seat area from going numb when riding?

Good positioning and a proper saddle. If part of your body goes numb on the bike, something doesn't fit right.

What's your response to those "healthy"people,who accidentally complain about how hard life is in front of u?

I don't notice? There are people in this thread who are SCI complete. I would never claim my life is hard, compared to them. No one wins that he "sweepstakes of suffering," the race to say "i've suffered more than you!"

Everyone's experience is different. Healthy people in a shitty life situation might have it harder than me in some way.

That was a satisfying answer.I really can't stand people who nag and complain about very small things.

Think of it this way: they're just asking you to care about how they feel. It's up to you if you want to care.

I know very little in the way of the science behind it, but do you think that the new upright assisted walking robots could actually help some people paralyzed from the waist down to learn to walk again?

I've seen some videos about how the repetitive movements help the body to learn to move in that way again.

Ekso Bionics in Berkeley, near me, has this cool assistive skeleton that basically moves for you once you lean forward. The technology and software are actually a few years old. Balance for robots is complex, but it's been done very well. There's also a team at Vanderbilt that has a similar exoskeleton which uses myostimulation at the joints to build muscle tone in paralyzed leg muscles. Super cool.

dude. i ride about 30mi a day in a city and my head is on a swivel the whole time. i can't even imagine not being able to turn my head and see whats behind me. do you use helmet mirrors now?

Nope. Never did. I'm just hyper aware of everything. I do shoulder checks every now and again when I'm not sure of the traffic behind me.

Is your favorite movie Quicksilver, Breaking Away or Premium Rush?

I haven't seen Quicksilver or Breaking Away. I actually liked Premium Rush, despite how dumb it was. Who rides a $10,000 custom Parlee frame as a messenger? Better yet, how does a messenger afford it? That's beyond stupid.

I wouldn't give up yet on never turning your head. I have see some great stuff recently on regrowing nerves and printing replacement body parts. I think the next 5 years is going to be full of very encouraging news for you.

Have you read about this stuff?

You misunderstand. My C1+2 vertebrae are fused together. Unless I get a new spine, my skeleton is physically incapable of the motion that would turn my head.

Even so there is still of lot of promising work being done. 3d printed scaffolds and injectable materials, stem cells etc.

http://sydney.edu.au/news/84.html?newscategoryid=1&newsstoryid=13715

http://www.3dprinterworld.com/article/first-3d-printed-titanium-jaw-implant-sucessful

And this is just the stuff already in the media!

We're decades away from replacing things in the craniocervical junction; it's just too risky. I do appreciate your optimism, but there's no way science will find some method to replace my spine while I'm still alive.

You handled this very well. I'm a left leg amputee with a rather unique type of amputation called a rotationplasty.

There's great things happening in medical science with the advances of 3D printing and stem cell use. Folks, in an honest outpouring of optimism, seem to think that doctors are just going to be able to grow/print me a new leg like, next year, and it will all be good. I get angry about the ignorance behind this thinking sometimes. As I said, you handled it with a good amount of grace.

You sound like a really awesome person. I don't know what I'd do if I couldn't turn my head. It sounds terrible.

Cheers.

I just looked that up. Damn, man. You're a badass.

I actually didn't know how I would adapt. 3 years later, I don't remember what it's like to turn my head, and though I know i'm a special case because of my overall fitness, though. I had to relearn balance, and there was a period where I had intense vertigo all the time and every step made me dizzy until my brain learned to filter out all the vibration that is normally dampened by the cervical spine.

3 years later, I don't remember what it's like to turn my head

Isn't it amazing how our bodies compensate and respond? I'm 12 years out from my leg amputation, but honestly, after that first year, I didn't remember what having two legs was like. My body adjust very quickly (much more quickly than most, honestly) to my new situation.

every step made me dizzy until my brain learned to filter out all the vibration that is normally dampened by the cervical spine.

This is really interesting; something I never thought about or considered. Thanks for sharing!

There was really no one to ask about all the various symptoms I'd have, so that was terrifying as well. I still get vertigo at times when my shoulders are tight, but that first few weeks, walking was difficult.

I got really interested in paralympic athletes, people with actual disabilities. There's this time trial cyclist with one arm. His remaining arm is so jacked to hold himself up in the extensions, he can probably lift me. There was another transfemoral dude who has this carbon fiber bar that attaches from his socket to the clip on his pedal. It's so cool.

That is some amazing stuff! I like watching wheelchair basketball. Those guys are so fucking insane on the court, and could probably hunt me down and kill me with their bare hands (and giant arms). They've essentially created a new sport that fits their situation, that is just as, if not more, athletic than any "traditional" sport.

people with actual disabilities.

The more you talk, the more I like you. I feel the same about my leg. I kind of cringe when people refer to it as my disability. I've just never felt totally disabled. There's certain functions, like running and kneeling, that are disabled, but I'm certainly not. I know people with disabilities, and I'm certainly not in their shoes.

There's another AMA for a woman who was limited quad from her bachelorette because she got shoved into a pool. Apparently her favorite movie is "Murderball." Love it.

I consider myself disabled in the strictest sense. I literally have a disability, but it doesn't affect my life in any debilitating way because I have learned to cope with it. I would say I'm less disabled than you, obviously.

I had one dude tell me I should smoke weed, that'll ease up the muscles. I chuckled. He was just really high.

Haha but we have the tech to freeze you! Then we can find a way to fix your spine! Now we just need to figure out how to thaw you....

Fuck cryo. I wanna be a cyborg. I'm already .6% metal, why not the rest?

I don't think it will take decades.

I can't give too much detail without breaking some agreements. I can say that there is some very exciting stuff coming in the next 5 years.

There is submillimeter tolerance between structures in the occipitocervical junction. The kind of surgery that would replace that part of the skeleton would basically require them to sever my head completely in order to get the new hardware inside all the complexity.

I would be shocked to hell if you or whatever company you work with/for has figured out how to repair craniocervical trauma in situ. The sheer amount of intertwined nervous and musculoskeletal tissue would probably make any human surgeon say "no thanks, I can't do that."

As a fellow cyclist, I feel it's those 50 miles each day that keep your head clear enough to get through all of the struggle. There's something to say about the meditative focus gained during those longer rides. I'm also amazed at your ability to return from injury, and find it motivating. After tearing tendons in my leg and ankle 13 months ago, I'm finally back to riding 50 a week with slight pain. But compared to what you've come back from, my struggles seem negligible.

How long were you down from cycling because of this injury? Also, if you don't mind talking about it, I'm curious as to what happened to cause your crash.

Again, thank you for sharing this, it's really motivating.

Well, I would disagree. My injury only affects my resolve and my riding position (can't get into the drops). Yours affects your ability to pedal.

As I said somewhere else in the thread: Tried to jump a curb to avoid a car driving the wrong way in my bike lane. Didn't clear the curb, and flipped like a missile straight into the sidewalk.

I was down for a year. I didn't actually start riding consistently again until 18 months later. I can't drive, so I do all my commuting on a bike. The first few months, I could only do 10 miles a day. I actually had completed my first century 2 weeks before the crash. In April of this year, I did my second century.

Was your spinal cord safe?

Yep. The paralysis was just pressure. No compromise.

How long/extensive was your rehab? I'm a physical therapist so naturally I love to hear about stuff like this.

My neuro was a fucking asshole, and actually didn't recommend rehab. I finally sought out PT on my own because of the nerve damage (which he caused, but can't blame him really). So technically, my rehab is still going, 3 years later, because I have to recover from total atrophy of the trapezius, a dysfunction that screwed up the rest of my body through compensation. My levator scapula is extremely strong, for example, but my erector spinae and paraspinals are very weak because they're under terrible stress.

My PT looked at me like I'm Superman. I don't like it; I'm not, I'm just lucky.

Does it hurt at all when you laugh?

Nope. Sneezing and coughing were painful for the first weeks after the surgery.

So what happens when you try to turn your head? Does it move at all or is it just stationary?

Well, because I've trained my muscles to adapt to the altered mobility, I actually turn my shoulders like you'd turn your head. It looks like I'm turning to talk to someone behind me, even if they're standing next to me. By which I mean, it looks completely natural to the untrained eye. My head is basically an extension of my spine at this point.

I don't know that my brain even remembers how to activate the sternocleidomastoid muscles that way anymore.

Hi there! Fascinating story, although Im sorry that it happened.

If a surgery for fixing you completely would be invented, but with a 50/50 chance of getting paralised again only this time for ever, would you do it? If not, how much of a risk would you be willing to accept?

Thanks for the ama!

Huh. I would probably refuse it. I have a 100% chance of enjoying my life now.

I would think the worst part would be the claustrophobia, the feeling of having no escape. Was that a factor at all?

Do you mean now? Not really. It's more the psychological sense of being forever broken.

At the time of the crash, while paralyzed, then yes. It took me 10 seconds to realize I couldn't breathe, 5 to realize I was paralyzed, and the remaining 15 or so, I was still in shock. I don't think I got to the panic phase before something released pressure on my spinal cord.

How old are you?

29.

What style of bike do you ride?

Felt AR5. It's an aero road bike. I have a very aggressive position too.

What coping mechanisms did you lean on in such a situation? Im curious being in the army and seeing the different methods soldiers use in "hellish" situations.

I can't even begin to imagine what soldiers see or experience in battle, so I'm hesitant to make any claims, but I made it through a solid week in the hospital without sleep know that any movement in my head could kill me instantly. Basically, I told myself there was nothing I could do except live. After the surgery, living through the knowledge of the disability in the dark of winter (cold weather makes the implant painful), even as I wanted to die, I couldn't. I told myself I had no choice but to continue, to go to work, to start rehab.

I found that telling myself that giving up will make me suffer worse, was better motivation than telling myself "I'm strong, I can do this." I wasn't strong, I was terrified and had no one who could understand (95% of people with my injury never survive to surgery).

Is your head positioned oddly? Like is it turned the wrong way?

Nope. I stare straight ahead. It's awkward because people think I'm staring at them, or ignoring them. I figured out little cues to compensate (i touch people instead of looking sideways), and I remind people when I talk to them I'm not ignoring them.

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God no. Always ride with traffic. The likelihood you get hit from behind is much less than the likelihood you cause an accident by salmoning against traffic.