What does it feel like to be paralyzed? Like everything in life, everyone has a unique experience. Same goes with the sensation, or lack thereof, of being paralyzed. Most people assume that it just feels like nothing. However, nothing is an oversimplification.
Even if no physical sensations are present, there is still an emotional or psychosomatic element to being disconnected from a portion of your body. In many cases, this is often an abrupt and catastrophic change, so it can be quite jarring and surreal. It becomes more “normal” overtime (but even 2.5 years in it still hits me once a day or so that holy s*@# I am paralyzed and in a wheelchair). Even more jarring is the fact that when I am asleep I walk and run in my dreams. Although strangely, I still consciously know in my dream that I need a wheelchair, it just isn’t there. Even so, when I wake up there is a sharp jolt into reality.
I have the unique perspective of having the privilege to have lived as a healthy able bodied person for 27 years. Then, in the blink of an eye, I am now living with a permanent disability. Overall, life after paralysis is a big adjustment at first. Essentially, you literally have to re-learn how to live in a new body. In this sense you are literally and figuratively born again. You have to start from scratch and relearn how to even the simplest of tasks: re-learning how to sit up, how to turn over, get dressed, how to transfer to your chair, shower, how to go to the bathroom, how to propel a wheelchair, how to navigate different terrain in a wheelchair, learn how to drive with hand controls, and just generally learning how to adapt to a world that is not designed for you.
A spinal cord injury is more than just not being able to walk, or having to use a wheelchair, It affects every single aspect of your life. That being said, everything is manageable and becomes more automatic over-time. Sensation and degree of paralysis will be highly variable for everyone, especially between those with incomplete versus complete injuries. Other factors include injury level, mode of injury, and time since injury. Some people may have more sensation on one side of the body or the other. In addition, there may be a degree of hypersensitivity to the point of pain that occurs at the injury level.
Simulating Paralysis
To any able bodied people who would like to simulate the experience of paralysis. One of the best ways I have seen it described is using the ring finger on a table trick. Place your hand in a fist with your knuckles pointing up, pressing your fingers against the table and extend your ring finger out straight. Now try to lift your ring finger up. You are still sending the message to your finger to move, your brain and nervous system are going through the same motions they have a million times before, but the finger does not budge. Now imagine this for a larger portion of your body, such as your legs, your arms, or your core. Additionally, imagine not being able to feel your finger as well.
Needless to say, it can be psychologically unsettling. For some people there is almost a sensation of being trapped in your body. It is a strange juxtaposition between parts of your body with “normal” function and those that are paralyzed. Before injury you don’t realize how much you take for granted. So many processes become unconscious and automatic in day to day living. To use an analogy, your body is a vehicle that takes you through the world and enables you to explore on your journey. It is not until this vehicle breaks down that you really appreciate the miraculous subtleties of the human body and the perfection of the system working in harmony.
Physically
In terms of physical sensation, I wish it were as simple as feeling nothing. Unfortunately, due to nerve damage and sustained trauma, chronic pain has become an ever-present part of daily life. Most of the time it just becomes background sensation. However, there will be a few moments each day where it will flare up and become excruciating. The pain is mostly focused at my level of injury and radiates down into my legs. The best way to describe the feeling is that it is like a prickly, burning sensation with almost a “tv static” electric quality to it. Or very similar to the feeling you get when a body part falls asleep, and the pins and needles sensation that you get as the nerves “wake up.” Except, my legs feel like this all day, everyday to varying degrees of intensity.
Needless to say it is not pleasant, and can become severe to the point where it becomes debilitating and hard to even think straight. It is also exhausting to always be in pain and fighting this response. There are some things that help me manage the chronic pain and make it bearable. Unfortunately, it is always present in some degree and has become something I live with every second of every day. Let me say this: it is brutal. I have multiple tattoos, used to kickbox, and consider myself to have a fairly high pain tolerance. However, it is without question, the worst pain I have ever experienced by far.
Becoming paralyzed is a uniquely surreal sensation. I was completely conscious the whole time, at the moment of impact it felt a switch had been flipped that turned off half of my body. Initially there was no pain, but I could not move, and with three broken ribs to boot I couldn’t raise my voice above a whisper to call for help. In addition, the way I was situated I couldn’t see if anyone was coming to help me or not. But even at that point I didn’t realize how bad it was, I thought my body was just in shock, I had never broken anything in my life prior to this, so breaking my spine was a go big or go home scenario.
Proportionally I am approximately 65% legs. It takes a lot of strength and balance to move your legs around using your upper body. Especially without straining my back or over exerting a muscle. A loss of my upper body or a serious upper body injury is a loss of my independence, so I have to be super mindful to keep my body healthy for the long term and keep up good habits every single day. There are no days off with a spinal cord injury.
People don’t understand how tiring it is in the beginning. Pre-injury I was in the best shape of my life. I did multiple intense hot yoga classes in a row, kick boxed five days a week, and worked physically demanding jobs. However, my first week in a wheelchair I could barely push myself 25m, and it was a slow go. But slowly but surely I built up stamina and the proper muscle groups. At first, with my twig arms and disproportionally weaker upper body, lifting your legs around feels exhausting. Overtime your body adapts and adjusts. Leg muscles atrophy, and upper body muscles become stronger.
For the first weeks after surgery you are completely dependent on people to take care of you, it is an eye-opening and dehumanizing experience to lose all independence. I can do all my self-care independently now, but it still takes more time and effort than it would when I was able bodied. Sometimes it feels like a full time job keeping myself alive. All in all, I take pride in doing things independently, even if it takes longer or it would be easier with help.
It’s no exaggeration that one small mistake could have potentially life threatening repercussions. Two years post injury your bone density becomes equivalent to that of a 70 year old lady, so one bad fall could literally cause broken bones. I have even heard stories of people breaking their leg while putting on their shoe since their bones were so brittle and it was too much force to cross one leg over the other.
In the early days of my injury it felt like more of a clear cut line between what felt normal and what I couldn’t feel at all. I initially had zero control over my lower abs and lower back muscles. I felt like one of those tipping drinking birds. Everything would make me tip over, the smallest bump or a sudden stop. It was even hard to hold my hand out in front of me without toppling over. Over the years my lower core has become stronger, and I have much more confidence in my balance. This is especially important when doing transfers or daily tasks like cooking or carrying something hot in one hand while I wheel with the other.
I have gained a lot of sensation back as well, and now it feels more like the top half of my body “fades out” or you feel like you are floating (think Casper the Friendly Ghost style). Consciously, I know my legs are still my legs, but there is a disconnect there. I liken the feeling to when you are watching tv or doing another activity where you legs are not in use. You just don’t notice your legs, even though you know they are still there. It’s also a shift in perspective that your legs become something to take care of and nurture, rather than vehicles to move through life.
Mentally
Another surreal aspect is when you accidentally hurt yourself. For example cutting your toe or spilling something hot on yourself, and you know that it should hurt, but it doesn’t. It is incredibly strange to see yourself bleeding or bruised up and having no idea when or where it occurred. Even worse is not knowing the degree or severity of an injury below level of sensation until it potentially becomes a life and death situation. Common cases in point include: pressure ulcers that develop to the point where they go down to the bone. Or UTI’s that progress to the point of kidney infection or sepsis.
There are no days off when dealing with a spinal cord injury and paralysis. It seems like there’s a million things to remember and consider and plan out every single day. The scary part is that if you slack off, or simply don’t have the energy to do all of these things, things can snowball into a potentially fatal predicament.
While loss of sensation is more jarring, it can also be a shocking experience as sensation comes back. You get used to not being able to feel, then all of the sudden one day you can feel a part of your body you couldn’t before. Or you can feel temperature, or pressure that was absent for a period of time.
At first you think it is in your mind; after all “phantom limb sensation” is a common reality for many people after a spinal cord injury. Your brain is so used to receiving a certain type of input over so many years, that it can essentially “fill in the blanks.” So not all sensation is necessarily real sensations, which is strange in and of itself. This can cause you to second guess yourself or be wary of getting your hopes up of sensation returning. As much as paralysis sucks, it is also a fascinating window into the intricacies of the brain and nervous system. So many things that were always “there” just cease to exist in an instant.
It is surreal and unsettling when your brain is doing what is has always done and nothing is happening. Your legs feels like they are made of lead and trying to fight against the gravitational force of Jupiter. You try to move them, but they just don’t budge. To this day over 2 years post injury, this disconnect still feels super strange.
In the beginning there was a lot of body dysmorphia. I couldn’t even look at myself in the mirror. It all felt to shocking and too alien. It has taken time, but i am coming around and feeling more comfortable in this body. Even though it takes a lot of hard work and can be stressful at times.
Emotionally
Emotionally there is a lot to handle following the acute stages of a spinal cord injury. For the first few weeks in the hospital you completely lose all of your independence and sense of privacy. Everything changes in a moment. You have to completely re-arrange your life. There is an overbearing sense of uncertainty about the future; in addition, hopes and dreams for the future seem dashed. People inherently treat you differently because of your disability. Since unfortunately, even second hand it can be a hard thing to deal with, and friendships change. Some people will be uncomfortable and find it awkward to face the new reality of your life. There is nothing glamourous or enjoyable about it. However, it is helpful to have friends sit with you through the grief and share some of the weight on your shoulders on bad days.
There can be feelings of guilt or remorse tied to injury leading to self blame or resentment. There is a lot of internalized ableism to overcome, and it takes time to re-establish self-confidence. In my case time has been the best source of healing. It is not something you can rush. Or something you can avoid. It is a classic case of the only way out, is going through. Allow yourself to grieve your old life, and be gentle with yourself. Allow the emotions to come up rather than bottling them up and waiting for them to explode.
For myself, there is peace living in the moment. Sadness comes up comparing my life to my past, and the uncertainty of the future can cause me to feel anxious. Unfortunately, no amount of regret will change the past; and no amount of anxiety will change the future. So I have found peace in my situation by being present and living in the moment. Mindfulness and meditation have been indispensable tools for helping me along this path, by allowing for the slow process of ‘forgetting who I was” so I can become who I need to be.
While the negative aspects of loss may be more noticeable on a superficial level. It has also brought many positive things into my life as well. It has helped me develop more patience, humility, resourcefulness and ingenuity. As well as, taking the time to appreciate the dark and cosmic humour of it all. Most importantly, I have become closer with friends and family in a way only life-shattering catastrophe can bring.
My injury has also given me a sense of perspective and I have learned to appreciate the little things in life more. When you toe the line between a life and death, you realize the things that really matter to you. There truly is pure joy in the simple things: good family, good friends, good food, sunshine, pets and laughter. Every moment is a miracle. After injury you realize how quickly it could all just be gone. So I appreciate the things I can still do and experience that much more. However, I am still grateful for the memories I have made and the lessons I have learned along the way., even through the pain and embarrassment.
Psychosomatically
On a psychosomatic level, and using a video game example, it is like cranking up the difficulty level in life. You become used to living a certain way all of your life, then in an instant you are playing a whole new game. Learning to live in a whole new body and adapting to a whole new world. Or at least one where you are two feet lower than before. The most eye opening experience I had early injury was falling out of my wheelchair. Being on the ground and not knowing how to get back up was incredibly surreal. Thankfully, there were people to help me up; and eventually, I was able to learn to do vertical transfers from the floor during my rehab stay. However, it was still an unexpected, jarring and vulnerable experience for me.
To use the car analogy again, in many ways it is analogous to driving an automatic car all your life, then all of the sudden driving a finicky, temperamental manual car with no dashboard indicators or speedometer, and knowing when to fill up the gas tank and change the oil and perform maintenance. Basically having to figure out a whole new way to live and do things without crashing the car or breaking down on the highway. Needless to say, it can be incredibly scary and overwhelming.
Another analogy is that it is kind of like half of your body is now a toddler and you have to anticipate its needs and keep it healthy, all while not getting direct feedback responses, but piecing together the bits of information and signals you can. The only difference is that my legs are basically perpetual toddlers which require constant babysitting and monitoring for the rest of my life.
Overall, it sucks not having the freedom to just flow through life with ease. I always have to worry about having the necessary equipment and making sure environments are accessible. Even in Canada there are many instances where there are one step barriers to get into businesses, and locations without accessible bathrooms. These physical barriers take away my independence and freedom. It is frustrating to have to navigate a world that generally thinks of you as an afterthought at best, in most causes, and a burden as a worst case. There needs to be a push for universal design and equal access for all. Everyone can use a ramp. Everyone can use wider doors and everyone can use a step free entry way.
Spiritually
It may sound counterintuitive, but becoming paralyzed has been positive on a spiritual level. There is no better express route to come to know that untouchable, unchangeable, and infallible part of yourself. You are not your body. You are not the activities you enjoy. You are not the groups you are apart of or the job you work. So much of modern identity is tied up in these things, but they can change and be taken away in a moment. However, there is an untouchable infinite essence inside of you that is immutable.
Paralysis or not, I still feel like I am the same me, even after a whirlwind of so much change. To use yet another car analogy: your body is a vehicle, moved by muscles and controlled by the nervous system. The “you” is not where you are going or where you have been. You are not the car. You are the driver. The car is merely a tool, just as the body is merely a means to move through life. Your car may break, or need a tow… or you may have to swap for a bicycle, but the “you” remains unscathed.
To sum up: although I physically do things a lot different now, I still feel like the exact same person on the inside.
Despite every single aspect of my life changing, I still feel like me.. at your core you are always the same. There is an eternal essence that cannot be marred by disaster or circumstance. Life is a dynamic continual state of change. I have re-invented myself before and I will re-invent myself again. It just hurts more this time because I finally felt that my heart was whole and happy. However, to feel something cause so much pain, means it was really special. To know that kind of love and passion: it is enough to feel that even if only for a moment, and even if only once in a lifetime.
Solidarity in Community
One of the most importance parts of coping and adjusting to a new life, is connecting with other people in the same situation. There is a strong sense of solidarity within the spinal cord injury community, the wheelchair community and the disability community and it is a worldwide network of people. It is comforting knowing that your struggles are not yours alone. There is a strong sense of unity through shared suffering. There are often local peer groups online or in-person; as well as, a number of Facebook groups such as: Spinal Cord Injury Rehabilitation & Recovery and Virtual Peers for Paras and Quads.
It can be very therapeutic to have a place to vent on bad days. As well as, a safe space to share with people who understand the intricacies of living with a spinal cord injury. As someone who is newly injured it is extremely beneficial to get tips and tricks from people who have used a wheelchair for a longer period of time, especially if they have a similar level of injury to you. I would recommend checking out YouTube channels such as Empowered Para, Pro Tips for Paras, or watching the Push Girls docuseries; they were all very helpful to me in my early injury days.
The Healing Power of Time
It sounds corny and overstated, but it really does get better in time. I still have good days and bad days, but overtime the good out-weigh the bad. There is no quick and easy way to move on after a spinal cord injury. As with everything in life, things unfold in their own time. Everything becomes more normalized and less overwhelming with time. The most important thing is to be gentle with yourself, have compassion for yourself, and give yourself credit for learning how to live life in a whole new body.
All in all, there is much more to being paralyzed than the preconceived notion that it just feels like nothing. What this something is will be unique to each person. There is so much more to being paralyzed than people realize. There are constant internal struggles with chronic pain and the emotional disconnect from parts of your body. Often these changes are abrupt and can take some time to adjust to. My best advice is be patient with yourself. If possible don’t waste your energy worrying over things out of your control.
To sum up: it’s hard, everyday tasks can feel exhausting. There is no glamour, it is grueling to say the least, and there are no days off for respite. But in spite of everything, it really is okay. It is something you slowly make peace with over time, you push through (literally), and live your life. Everything settles and you adapt. While I am not necessarily stoked about any of it, I have made a commitment to myself to live my life in the capacity I am able. I am not wasting time wondering what could have been, or wasting the opportunity of a second chance at life.
There is a real feeling of grief and anguish knowing that there are many things I will never be able to do again. As well as, things I will never get to experience at all. At least not in the capacity I imagined. However, I make a conscious effort not to waste my limited energy bank on remorse or self-pity; neither will change anything. Ultimately, life isn’t fair and it’s not all about me. Suffering is inevitable and not something that can be avoided. I am choosing to make the best of a bad situation and transform it into something that will help others.
So final note: live like it is the last meal you will eat, the last time you will see a loved one, the last time you will feel the wind in your hair or the sun on your skin.. because one day it will be, and it will always be sooner than you want it to be.. but that makes it that much sweeter. Life can change fast, and time stops for no one. So appreciate every moment for the miracle it is. Life can and will change fast. We are all on borrowed time.
