Paralysis, what does it feel like? To be honest, I’ve been avoiding this moment. It’s a large topic that will be divided into separate posts but I knew at some point I wanted to share this part of my life. Still, it’s something that feels weird and impossible to explain. Possibly because I have to open my mind to the physical pain I try to ignore. Or I just feel awkward explaining how I can/can’t feel areas of my body. I’m so used to this wheelchair that I literally forget, “oh ya, this is my life now.” So as I keep the tears in, here’s goes nothing.
When I broke my neck in 2012, I instantly knew I was paralyzed. What else could have described what I wasn’t feeling? My legs were attached but it felt as if they never existed. The only way I can think to describe this feeling is if you try to picture yourself with two extra legs… leg A and leg B. Now you have two extra legs but imagine you had them this whole day and you only noticed when someone pointed them out. Like right now. That’s awkward. When I was in the hospital I never knew what my legs were doing. For a long time during my recovery at Cincinnati Children’s, I thought I was wearing boots to prevent drop foot in my bed but it turned out the nurses would take them off with 2 hour intervals. Imagine my disbelief as my parents told me, “oh ya honey, didn’t you know they were off?” What??? No, I had no idea. What I’m trying to convey is this, paralysis makes your legs or arms foreign to your mind. The connection is cut off completely. You have no sense of position, touch, or temperature. Your limbs are just “there”.
Thankfully, I have gained sensation in my legs since then which brings me to a new level of “how do I explain this feeling” for you. Pain in spinal cord injuries is very complicated and there are many types. Right now I have three areas of sensation that I will try to explain in simple form. They are numb, ehhh, and ouch. There are parts of my extremities I cannot feel and other parts have unusual feeling. My triceps, forearm, hands, and areas of my legs are numb. You can touch them but there’s a good chance I will have no idea. The “ehhh” areas are the places I slightly know you are touching but it’s very questionable. Such as my thighs and abdomen. The third area is the “ouch” feeling. This feeling is painful by touch or position and is typically felt in my feet. It’s is called central pain and it’s a blessing in disguise. You might be thinking, how can a touch be so painful? A soft touch on my feet sends transmissions to my brain, but unfortunately, these transmissions are misunderstood and confused for pain. My brain says the touch burns like fire, tingles intensely as if your foot is asleep, and stabs. The lighter the touch the stronger it burns. So even though a sheet could gently rub on my bare foot, my brain thinks it’s pain. It’s awful and very frustrating. However, it doesn’t hurt when I have shoes on! I’m not sure why this is scientifically but I’ll take it. Temperature affects my pain as well. When it is cold, my feet swell. The tingles and burning intensifies. When it’s hot, my feet will swell but the pain isn’t as strong.
Please understand I am not complaining about my pain but trying my best to be transparent. I want to show you a fraction of what it’s like to feel paralyzed in my specific recovery. This is my life and it has taken time to learn how to cope with the physical pain. Everyday comes with different pain. Some days I don’t want to leave my bed. Even though my pain isn’t pleasant, it’s a blessing because I’d rather have the pain than not feel at all.
I hope you have gained a new understanding of nerve pain 🙂 Keep in mind, this is just how my pain feels, others might experience it in different ways.
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