Since September is spinal cord injury awareness month, I thought I’d share a little bit about what I can feel and move despite having a SCI, starting from the beginning. It is said that no two spinal cord injuries are alike, so please remember this simply my personal experience.
In most cases, people who have become paralyzed through a spinal cord injury, would give anything to be able to move or feel again. They may seek physical therapy, exercise programs, experimental surgeries and more in an attempt to regain the movement or feeling they once had. Getting any amount back is an amazing thing in itself, whether it’s of use or not. Even having the ability to move a finger or toe can mean the world to someone who’s paralyzed.
On November 1, 2002, at the age of 16, I was in a car accident. I broke my neck at C-1 C-2 and injured my spinal cord, instantly paralyzing me from the neck down. Due to my injury level, I’m on a ventilator and require nurses 24/7. At the time of my injury, I lost all movement and feeling below my neck. About a month afterwards I started getting a tingling sensation throughout my body. Although the doctors saw this as a good sign that things were reconnecting, I didn’t share the same “goodness” about what I was experiencing. It’s very hard to explain how my body felt, but the best analogy I can give is to imagine that your foot has fallen asleep. You know the pins and needles you feel as the blood starts returning? That’s what it was like for me. Not pleasant.
I was screaming inside while my doctors were trying to tell me promising things. The tingling was constant and so annoying I couldn’t sleep and didn’t want to do anything. Any time someone touched me it got worse. My neurologist put me on a medicine commonly used for patients with frequent seizures and it lessened the intense tingling to more of a dull feeling.
Over time more feeling started to return in different ways. Since the accident, I’ve had a Caring Bridge site that my family would post my progress on. This is what they posted about a month after my accident:
Wednesday, December 04, 2002 at 07:36 PM (CST)
Tonight I want to share some exciting news. Jenni can feel touching in her arms, mostly her left side. She closes her eyes, you can touch her hand, forearm, wrist, fingers, and she will tell you where you are. Not as sensitive on the left side, but evident. This is a very good sign. We will let you know more as we do.
Saturday, December 07, 2002 at 10:21 AM (CST)
There’s been a little change with the feeling. As posted Wednesday, she can feel touching mainly on her left arm, hand, etc. Now she can feel touching on her left calf, and also the bottoms of her feet. She is regaining some sensation, however nothing in the form of movement yet.
Throughout the years, my sensation has increased a lot. I have feeling everywhere but it is more predominant in some places than others. It all depends on where it is. I’m no longer on medication and the pins and needles sensation has stopped throughout most of my body, with the exception of my hands or feet. In my lower body, the feeling is duller and deeper, requiring a harder pressure.
As far as my upper body goes, I have more feeling on the left than the right. My greatest feeling is on my arms, more specifically the top of my forearms. The sensitivity is so strong that I can even feel a crumb, drop of water, article of clothing, strap etc. and tell someone where it was. I can also feel my muscles throughout my whole body, again better in some areas than others. That’s probably why I enjoy massages and stretching so much!
In my case, I can also feel pain. This is good because then I am aware that something is wrong but it’s also bad because it hurts. In a lot of spots (mostly in my neck, shoulders and back) it’s chronic and hard to manage. I’ve tried many interventions including therapy, medications, Botox, TENS unit and more all of which haven’t decreased the intensity of my pain for a long period of time. Hopefully I can figure out something to help in the future.
Spinal cord injuries differ so greatly depending on the breakage point, type of damage, location, completeness, etc. It’s very difficult for someone in my situation to explain every aspect of feeling. This is the best I can describe what I’m able to feel based on my injury. I’m very open and honest so if you have questions feel free to ask! In Part II I will describe the movement I have.
Do you have a spinal cord injury? Leave a comment to share your injury level and what you can feel.