Geek on Wheels

Happy New Year one and all, as I start 2015 (the Future!) off right with a post that has waited in my wings for a while. It isn’t a resolution, just a promise to myself to truly, finally get back to some writing…so…I thought let’s start here. With another of the questions I get so often. What the hell is a spinal cord injury at the T9 anyway? (well, let’s be frank, no one who isn’t an SCI asks about the T9…but they do want to know what’s up!)

Hi, I’m Jason T9 incomplete para. Good to meet you.

It’s funny, but when I meet other people with spinal cord injuries (get used to the term SCI), it seems like we almost never introduce ourselves by our full names. Instead it is first name and what our injury is. The level of the injury actually being the more important than the name naturally.

Why we do this is another post in and of itself and not something I can easily explain. It just seems to come naturally anymore. This post is about the letters and numbers.

T9 refers to Thoracic 9, which is the number of the disk where the damage approximately occurred. The lower the number, the higher up your back. Thus T1 is the base of your neck, T12 your lower back. Each level has its own various effects, with the lower numbers (and thus higher in the back) being more and more extreme. T9 places it just about at the lower end of your shoulder blades. At that spot (and various spots in your spine) the nerves actually cross back and forth, producing different effects on the body. Thus when I was first injured I had one leg with no feeling, but strong, but the other with full feeling and weak. Awww how I miss those days.

Now what about the incomplete part? I am considered incomplete because my spinal cord isn’t completely cut. It’s badly compressed due to scar tissue which has caused major nerve damage in the region. Thus I still have some movement in my lower extremities, though as time has gone on that control has become less…well…controlled. Actually, it’s a bit of a misconception that a complete para has just floppy legs. They can’t control them, but they still experience spasms and never pain similar to what I do. I just can sometimes make them obey me…usually after much swearing at them.

There are no hard and set rules when it comes to spinal cord injuries. Two people with almost he same type of injury may show very different symptoms depending on the level of the injury and the severity of it. There are some guides that can help people understand what happens when a person is injured in a certain place, but one of the big things I’ve learned in my own rehab time is that no two spinal cord injuries are the same. I found this infographic from the great people at www.apparelyzed.com and it has a host of info that I barely even knew. I mean, seriously, 81% of spinal cord injuries occur in men (which of course brought the Shannon response of “that’s cause your more likely to pull stupid stunts!”…and I couldn’t really argue with her). Oh and the RTA graph refers to Road Traffic Accident for the causes, I had to look that one up. unfortunately, it’s US stats, but I imagine it’s still relevant on this side of the border.

While there is a lot to absorb and discuss in this, I also have something to admit here. This is a post I had pondered for a long time, but was a bit reluctant to discuss. When I identify myself as T9 to others with SCI’s, there’s a certain amount of “taken for granted” that comes with the knowledge of another’s injury. We just assume certain things about the injury and the effects its had on the other’s life and there is no need to bring it up. However, beyond the legs not working, or perhaps arms if the level is higher, people without SCI’s often don’t think of the other impacts its has. Or more likely, don’t WANT to think about the impact it has. I tend to think it’s more the latter…no one wants to think this could happen to them.

To be honest, I didn’t want to write about EVERYTHING that is affected by the injury. Oh sure, my family and friends know I am quite open in discussing the impacts of it, and I don’t keep anything a secret. Putting it out on the blog though, I wasn’t sure. As such, some things I will leave open to your interpretation and questions later. The trick is this past fall  I had a bit of a pissed off epiphany during a conversation with a client. It happened when the client assured me that Shannon and I would change our minds about having kids. I was forced to stare at her blankly as she said this, not really getting how someone couldn’t make what seems to me to be an obvious conclusion. Thus I said, “screw it”, there is nothing about this that needs to be blushed about. It’s reality. It’s a reality that can happen to anyone…and in our case, we’ve dealt with it.

So take a look at that chart on the right. Even with all I now know it’s amazing me to how much can be affected by injuries quite low in the spine. It also amazes me how lucky I am that I am “just” a T9. A few slots higher and I’d be at risk for hand issues, difficulty holding myself straight and certain diseases that can afflict those with T6 and above. Despite all that, I got quite lucky in the first few years of my injury. I didn’t show many of the symptoms of being a T9 until very recently. I don’t take that for granted…and I know that what I experienced isn’t what more would with a similar injury. I also know that my knowledge is quite amateur despite the experience.

So here’s the gist of it. Everything you see in that chart is affected below the T9. Yep. Everything. Strength and positional awareness in my legs. It also affects what is known as spasticity and tone. My legs tend to spasm at random times, with little to know rhyme or reason to it. This shows that there is still some muscle strength in them, it’s just that signals from my brain aren’t getting down there properly, which leads to not just lack of control but also the random spasms. The spasms themselves aren’t GENERALLY painful, though sometimes the cramps in the muscles can get sore, which makes me wonder how bad the pain must really be given how little I can feel. What sucks is that it can lead to my feet kicking out into objects (yes I’ve broken some toes) or my knees ramming up into tables. My friends are now used to having dinner with me and knowing the cutlery is going to jump at various times during the meal.

What’s more complex is the tone in the legs, which refers to the way muscles tense up and stay tense, once more out of control. I’m a bit unique here. Tone normally goes one way and forces the legs to a certain position. The muscles hit tone, and lock up, forcing the legs into either a bent or straight position, anywhere from minutes to hours at a time. Normally, this happens in only one direction. I happen to be one of the rare “let’s show Jason off to the students” type that the tone goes BOTH ways. This tends to kick in at the same time and it’s really the only reason I can still stand for short period and walk short distances with a walker. It isn’t safe and we are trying to cut back on it as much as possible, but it is still there when I need it. Everything else you see in the Lumbar and Sacral levels is affected to some degree or another (you’ll let me to leave that vague…hey there’s family that reads this!) Otherwise, from the thoracic region, it’s only my lower abdominals that are seeing any ill effect, thus I truly do count myself lucky.

I get asked quite often, what is affected by the injury and I hope this helps to explain a bit of what mine and other SCI’s truly are. So hi, I’m Jason, a T9 incomplete para. Let’s look at why we identify ourselves that way another time shall we?If you have questions or comments, or even corrections to my meanderings, feel free to comment below.

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