As a kid, I can recall being very proud of a silly feat I could accomplish. I was really, really good at picking up objects with my feet…or my toes more like it. No, I couldn’t resist the cheap pun. I would spend hours picking up pencils and crayons with my toes, even attempting to write on paper and colouring books from my toe skills. I might have even been better writing than when I wrote left-handed. Hell, there are a lot of people who’d say it was better than my adult right-handed chicken scratch now (wait…they are putting their two cents in now…I can hear them as I write).
I bring this up because my toes matter in my history of becoming a geek on wheels. Confused yet? In 2008, when we first noticed my right leg doing a swing kick as I walked up the strip in Vegas, I started to notice around the same time that I was having trouble wiggling the toes on my right foot. I could do it…but I had concentrate do it. That’s not normal. Go ahead and try it. You don’t even have to think about it, you can do it without even having to look at your feet. As time went on, I couldn’t do it without staring at the toes and even then, I could wiggle them and curl them less and less. When surgery number two happened in 2010, one of the first things I did upon waking up in recovery was to wiggle my toes. If I could do that, I was sure that things were ok. I could do it. It wasn’t any easier, but it wasn’t any more difficult either. A good sign. For a few months it stayed that way, with my left foot as dexterous as ever…but the toes were a good sign when things kept getting worse.
So where am I going with this? It’s not the most common question I get, but occasionally someone does ask what it “feels” like. It’s not an easy question to answer, especially when you can no longer “feel” anything in the area you can’t control. I recently came across a picture that was designed to bring attention to September being Spinal Cord Injury Awareness month. I shared it out on my FB page, but the more I thought about it and the more I challenged people with it, the more it made me think.
So take a look and give that a try. Put you hand on a hard surface, your desk, even your thigh, and extend your ring finger out. Now try to lift it. Now wait! Don’t cheat! This is really key, because I know people will try this and say they could move it…but you will probably make the same mistake that I did when I first tried it. I thought I was able to barely lift the finger, until I realized I was doing it by actually slightly bending my wrist and rocking my hand. I was cheating. The trick is, this actually shows you something else about how it feels to be paralysed. You do a lot of cheating with other parts of your body to make up for the parts that you can’t control. For example, rocking your hips to get your thighs to lift from a seat.
Now look, I also know full well that someone out there is going to do this and be able to do it no problem. That number of people who can do a Rock style raise of one eyebrow (I’m looking at you Benjamin Kean). Most won’t though. So look at that finger, swear at it, use your other hand to force it to lift and feel the stretch in the back of you hand as you do. Scream at it that you own it and you control it.
You’ll get a small idea of what it was like to lose control of one’s toes…and from there, your legs. I’d be curious how many actually try this and what they think.
So here’s to Spinal Cord Injury awareness. I think a bit of empathy for what’s it like, can go a long way.