People With Quadriplegia Are Holding Nothing Back About What Their Lives Are Like

Life takes us all in unexpected directions, but for some, life takes them down a far more unexpected path than they ever could've imagined.

Over on Quora, people with quadriplegia (a form of paralysis that affects all four limbs and the body from the neck down) are bravely sharing their experiences. It's an important conversation that hopefully will spread understanding and empathy. Here's what they had to say:

(Some entries were taken from Reddit threads here and here.)

Warning: This post includes a mention of contemplated suicide.

1."I was a cheerleader, and I was at the top of a human pyramid. We were doing a stunt in a sports event. During a performance, one of my teammates below lost her balance, resulting in me falling and hitting my neck hard to the ground. The fall was quick, and I could feel a huge pain in my neck and even heard the crack of my neck breaking. All my senses became confused; I was in shock, and I don't remember anything from there."

"I just woke up the next day in the hospital with a nasal cannula and other medical devices. There were my parents, and I was scared. I could only notice that I couldn't feel my body and tried to move it, but nothing. We waited a while there while the doctors made some analysis of my condition, and that's when a doctor told my parents and me that my injuries were severe because I broke my C3 and C4 chords, and I'd never be able to walk again. It was devastating to hear this news.I wanted to have assisted suicide after I knew I wouldn't be able to walk again, but my parents didn't allow me that because they wanted me to live. I told my parents and my sister many times to just kill me in a quick way to end my suffering, but they loved me and wanted me alive; plus, my parents are Christians, and that's another reason they wouldn't let me die. Since I couldn't do anything to even attempt suicide because of the paralysis, I decided to starve and dehydrate myself to death by refusing to eat. My mother desperately tried feeding me by force, but I'd just spit the food out. They had to give me nutrient injections by force because I wouldn't want to eat. My parents, seeing that I was suicidal, took me to therapy, and the therapist told me it was normal to feel that way but that I could still live because I had other abilities, and after a year of therapy, I changed my mind. I still get depressed sometimes, though."

—u/Glum_Benefit3704

2."Well, for me, it’s definitely isolating; I have lost a ton of friends from before my accident. But I have gotten used to the isolation. In terms of the physical sensation? It’s very weird. I don’t feel my body, but I know it’s there. I have head movement and some feeling in my neck, but that is it."

—Beth P., Quora

3."Here's what it's like: Imagine sitting next to someone with their arm on an armrest. Now, try moving their arm with your thoughts alone. That might give you an inkling. I can remember how to move my arm, but no matter what I do, nothing happens. I can't force it to move; there's no strain...my body just ignores me. Remember, there's no sensation either."

"How do I cope with it? Well, I was in a lot of denial to begin with. I would strain with my head, hoping to wake my body up. I just could not believe that this was all I could do. Unfortunately, it was and still is.

In rehabilitation, we learned how to use what function remained to us. In other words, neck control and how to use a mouth stick. That's what it sounds like — a stick I hold in my mouth — that I can use to press buttons. I use a smaller stylus for my phone which is how I'm typing right now. I also control my wheelchair with my mouth.

Not being able to move comes with several other problems. For example, sores from remaining in one position for a long time, shortening tendons that make limbs inflexible, and spasms where the nerves (in your leg, for example) talk to themselves and cramp up. I can't feel this, but it can make things awkward for my caregiver if they are trying to move or dress me. So, I have a daily range of motion exercises in which a physiotherapist will move my limbs to encourage flexibility and blood flow. I guess it's a bit like yoga!"

—Ellie H., Quora

4."There’s a lot to deal with. Firstly, you need to wake up hours before the time you leave home to get ready. In my case, there’s severe pain all the time, along with violent muscle spasms. There can be special situations, too, like finding my bed flooded when I wake up. More to deal with is human. My spasms are so severe that they may kick me out of my chair and make me look abnormal. That often scares people off and hinders me from going out to the public."

—Emily L., Quora

5."I was asked if I could have sex/feel anything. Yes, I can and have had sex. There is no difficulty getting an erection, but I get them only as a response to physical stimulation (i.e., being turned on alone will not cause an erection). Sometimes, there is difficulty maintaining an erection, though, so I use Viagra. I cannot feel below the nipple line of my chest, so I do not derive pleasure through sex in the same manner that everyone else does. For me, it truly becomes an emotional experience. I do not orgasm, but I definitely feel an emotional release when my girlfriend has."

"I find sex emotionally satisfying, but I do not always feel physically satisfied if my girlfriend cannot go another round. I prefer having sex with the light on so that I can be visually stimulated, and given the choice, I would rather bring my girlfriend to orgasm orally. When giving oral sex, I am in control, which is a welcome change. Having said that, I am more than willing to change things up to make my partner happy."

—u/quillquip

6."To be frank, it's not easy. I've been in a wheelchair for more than three years now, and I'm still learning how to manage my daily life as a quadriplegic. One of the challenges we have to deal with are people's stupid questions. They ask things like, 'Can you hear?' 'Can you understand what I'm saying?' 'Does IT work (meaning whether I can get an erection and have sex)? How can anyone ask this type of personal question to someone they don't know?"

"Also, when you don't have anything to do the whole day or, to be precise, when you can't do everything an average person does, you think. You think a lot, unnecessarily.

Sometimes, you're laying in your own pee for hours but don't realize it until someone comes to change your side and sees your flooded bed. It may be disastrous in winter when you're covered in blankets but wet inside.

Summer isn't good weather for quadriplegics either. Since Quadriplegics cannot sweat, our body temperature rises and rises and won't come down until we enter a room equipped with AC or air coolers. Breaking one's spine means losing control over maintaining body temperature, too.

My country, India, makes life for people in wheelchairs more miserable. You can't go out in your wheelchair for 100 meters without a problem in small cities. You'll encounter potholes and speed breakers on every step. Even washrooms with wheelchair-friendly notices aren't accessible.

I'll end this with one funny but not-so-funny problem. Quadriplegics can't feel their body below the level of injury, i.e., the neck. But they still feel pain in their legs and hands, sometimes unbearable/severe pain. Doctors say that it's just in your mind. It's neuropathic pain. But it's not less than real. And there's no solid treatment for neuropathic pain."

—Purushottam, Quora

7."I have been paralyzed from the neck down since a car crash in 2018 left me a c3 complete quadriplegic. I feel like a baby! I can’t do anything physically for myself, as I can’t move or feel anything below the base of my neck. I’m totally dependent on others to look after me, feed me, dress me, put me on the toilet, and so on. Little problems drive me mad. You don’t know hell until you’ve got an itchy nose and no way to scratch it. Objects are an endless source of frustration when all you’ve got is a mouth stick."

"This is permanent, so I’m doing my best to get used to it. My mind is still active. I’m hoping to study accessibility next year."

—Ellie H., Quora

8."What does a typical day look like for a quadriplegic? TV most of the day, mostly in bed. I sit up in a wheelchair for about five hours a day for my cardiac health. I sometimes get taken for 'walks,' but I can't handle temperatures outside of 70/75 degrees very well because of my brain injury, so I spend most of my time inside."

9."This is what I wish people understood about being quadriplegic: I can drive my chair forward just fine! However, I can't see behind me, so the chances of you being reversed into are high! I do apologize in advance, however."

"While I personally love answering questions, others in my situation may not.

I have a sense of humor! It's wheelie used at the wrong times, and I get myself in more trouble than anything else *shrugs*

Obstacles are everywhere… even if it looks clear there is something, somewhere, just waiting to appear.

Kids are curious, so let them approach me. I promise they will leave with a smile and more knowledge than most.

Kids don't see a chair; they see a jungle gym. As fun as it is, I'd rather leave the jungle gym to my own children to avoid the awkwardness of some 'wheelchair' lady cruising around with random children hanging on and around her chair. Yeah, it's cringeworthy.

A more serious note:

Quadriplegic means it affects four limbs. I know I can use my arms, and my hands seem fine, but please understand that quad (4) literally means four affected limbs, not necessarily four nonworking limbs.

I drive. As often as I joke about using a broomstick for the accelerator, I don't really, so don't panic.

Disabled toilets...the big controversy! Gasp! Seriously, if I see you entering a disabled toilet while WALKING, you know what I do? Nothing. Because it's not my business who uses a toilet, and I am not the 'check your disability card on entry to use the loo, police.' If you have a pram or a child, I would much rather wait. Your safety, and that of your kids, is primary to my 'entitlement' to be first.

While most people are usually offended and triggered by what I say, believe me, many of us are happy-go-lucky individuals with a dry sense of humor. I laugh, you laugh, and they laugh. It is much more fun than crying over things that cannot be fixed."

—Kayla S., Quora

And lastly, here's some important advice from someone whose been through it, to anyone just starting the journey:

10."I'm a quadriplegic as a result of a diving accident, and I know how overwhelming things are in the beginning. So what's my advice? It's that things can always improve. I know how desperate and disheartening things can be in the beginning, but many people, including myself, live happy and fulfilling lives despite their condition. Even though I'm not able to fully care for myself independently, I was able to complete school, relearn how to drive, and do many other things. Also, God has taught me so much through my circumstances, and I find that I am much better able to empathize with others who are going through difficult times. With time, I actually learned to be thankful for my injury. Like I said, things can always improve, so don't let yourself stay down."

—Nicole A., Quora