Gumby

I don't talk about it often, if at all, but with winter approaching and time just taking its toll, I thought it might be useful to chronicle a bit of what life is like with a painful condition. I have Ehlers-Danlos Syndrome, type III, which is a disease of collagen, the helpful stretchy support molecule in many of our body's tissues. My collagen is all kinds of fucked up, which means that my skin is pretty crappy at healing, my joints are incredibly flexible (like freak-of-nature flexible), and I'm often tired and have crampy gut problems. Doesn't sound too bad, right? That's kind of how I present it when it comes up (not often, but people do ask, especially when I'm wearing my silver ring splints). The reality of it, though, is that it affects almost every move I make, all day, every day. Here's a helpful quick video that explains it well. Read if you want, the video is just down a bit. She has some good info on living with EDS as well.

The downside to being able to do the splits at age 34 and kick people's heads with hardly any effort is that every single joint in my body is prone to dislocation, often with very little force. Some of the more fun ways I've dislocated things:

Picking up laundry from floor: shoulder
Kid jumping into my lap: rib, from sternum
Pushing seat belt buckle: finger
Fun shove from friend: shoulder
Picking up shampoo bottle: elbow (goddammit this one happens all the time)
Sleeping: shoulders, ankles, collarbone (that one sucks)
Standing there idly: hip
Kid holding my hand, not yanking: shoulder, wrist, fingers
Existing: thumbs
Walking around: toes

I could go on. One thing I don't always make clear to people, partly because this is just how I've always been and so I don't make too much note of it, is how many times a day this happens to me. I think if I tallied it and averaged it out, it would probably fall at around 10-20 dislocations per day. Most of the time they just resolve themselves. If you've ever dislocated something you'll know that it hurts like a motherfucker. So yes, something painful happens to me quite often, every day. No, I don't usually mention it. Yes, it usually goes away, the initial sharp pain, and yes, I am often sore afterwards for quite a while. As an extra bonus, this condition comes with general musculoskeletal pain, unrelated to dislocations. So even a good day, joint-wise, can be a very achy one.

Like I said, I've always been like this, but the last 5 years or so have been increasingly painful. It's getting harder for me to get out of bed, harder to deal with some everyday activities (driving comes to mind, it is not going well in the hand/wrist pain department), and harder to cope with days that are rainy, cold, and otherwise barometrically shitty. I'm very achy much of the time, and I find myself getting irritable on particularly bad days, as the pain wears me down. Sitting is hard on me, but standing can be worse, so keeping in motion is one way I cope, that is, until I need a nap. I always thought I was kind of lazy or something, because fatigue is part of this condition, but my physical therapist pointed out to me that since my muscles are constantly vigilant, doing the work that most people's natural joint limitations do on their own, it makes sense that I'm a little more tired than most people. That was helpful to know. I don't feel so bad about having to rest a little now and then.

Now, you may wonder how I make all of this work with sports, especially the sports I do, which involve intentional bodily harm (those are the really fun ones). The answer, like with many things in my life, is that I Just Do. I make it work because I want to, and I am among the more determined people to walk the earth. I am firmly convinced that my activity level has a lot to do with the fact that I am not using a cane or in a wheel chair like many people my age with this condition. I'm probably ten trillion times more vigilant than anyone else has to be in karate, like for instance most people throwing a punch don't have to consciously stop it before their shoulder comes out of its socket, and it's the times when I'm not paying such close attention that something goes wrong. In jiu jitsu, which uses joint locks, I tap out almost instantly if someone has a lock on me, before they can pull it, because it will dislocate. I actually think my level of coordination has been enhanced by the need to know exactly where all body parts are, at all times. I cannot afford even a small misstep, my toes will go out for pete's sake. And I won't be able to do these things forever--I see a lot of swimming in my future. So for now, it's balls to the wall while I can.

There's a lot more to this condition than I've written here, but I don't really feel like making a long list of what mostly sounds like complaints. Suffice it to say that there's not much in my life that remains unaffected by it. And I know that it will continue to progress. So we will see where I end up, and in the meantime I will pack in all the physical activities of a lifetime, and continue to work on kicking people's heads. I drink from the glass that is half full.