I wrote a few blog posts last year in which I talked about the struggles of rehabilitation. It’s easy to talk about the hardship, the problems, the set backs, after all they stare you in the face and make life tough, but it’s just as easy to overlook all the positive developments. They creep up on you subtly and once established are soon taken for granted and you forget what life was like before that new found strength. I’ve been injured for twenty years and pursuing ABR Therapy for the last fifteen and I think it is time to reflect on just how far I’ve come.
Last autumn I went to see Leonid Blyum for my biannual assessment and he was amazed at the improvements in the divisions and connections in my back. There was a time when my trunk was an amorphous lump. With a catastrophic collapse of structure all the divisions and connections had gone. It’s like an earthquake; all the bricks are still there, but the connections are broken and the form has gone. You could take a fold of skin and slide it all the way up and down my back; the skin was not integrated into the structure. Now this is not the case. The folds of skin are firmly connected and cannot slide across the divisions between the sections of the back. I think Leonid was more excited than I was!
My perception of these improvements is rather different. Rather than seeing it from an external perception, I perceive from within, so for me these improvements manifest in improved articulation of the spine. Years ago my body was as flat as a playing card. It hinged in certain places, but not through the articulation of the spine, that floated around in the body playing no functional role. It hinged in the middle of the chest for example, deforming the ribcage. On the whole my trunk was stiff, but now it is much more flexible with all those individual articulations of the vertebrae coming back into play.
When it comes to spinal injury there are no miracle cures, only steps in the right direction, and I’ve taken so many steps through my therapy work that my body barely resembles the paraplegic I once was. I still trundle around in a wheelchair, but it must be realised that walking is the icing on the cake and rebuilding the cake is more important than icing it. In order to bring about functional change you first have to create structural change, so improving function is a long slow process especially if your ultimate goal is to walk again. One of the problems in trying to explain to people just how much I have improved is that they see walking as the only goal and can’t understand how you can have improved without getting the legs working again, so I’ll endeavour to give you some examples as to how much my life has changed.
When I embarked upon ABR Therapy, five years after my injury, my body was not only terribly depleted, it wasn’t expected to improve. When I went to sleep at night I woke up in exactly the same position I fell asleep in and always awoke to aches and pains from being in the same position for too long. I simply didn’t have the capability to turn over without being fully awake. To turn onto my side I had to sit up, which meant pushing my torso upright with my arms, then I had to use my arms to lift one leg over the other and then haul my body over onto my side, again by using my arms. From the waist down I was dead weight and this acted as a kind of anchor. These days I toss and turn in my seep like anyone else. I’ll turn from side to side without sitting up and without using my arms. I have the capacity in my trunk to turn my body and the function in my legs to position them where I choose.
Sitting as a paraplegic is not easy. Years ago I used to catch the bus quite a bit. Even if I had brakes on my wheelchair it wouldn’t make it stable as the bus lurches around, so I always sat on a seat and wedged my wheelchair in somehow. Getting to my destination without falling off the seat was not easy. Luckily there are always bars and poles to hang onto on a bus and hang on was what I had to do. With so little core strength I lacked the ability to support my own trunk and instead had to try and balance it on top of a collapsed and crushed pelvis. Last summer I caught a bus for the first time in ages and travelled a familiar route. I sat there perfectly stable with my hands in my lap. I didn’t have to hold on and was never in danger of falling sideways. It wouldn’t have surprised me if people wondered why I had a wheelchair next to me.
The other thing about sitting is the risk of pressure sores. There was a time when my backside was skin and bone. I lived on spirit in those early years and threw myself into life. After a trip to the West Country on my motorcycle and sidecar I developed the beginning of a pressure sore which got worse and eventually the skin broke down. With ABR techniques we successfully healed it, but it was testament to just how vulnerable I was. Leonid’s other excitement at my assessment was what he termed my ‘perma bum’. Finally I have a deep and underlying substance to my buttock muscles; finally a cushion to sit on! Of course I still pay attention to looking after my backside, but with greatly improved quality to my pelvis, hips and buttocks the worry has gone and I sit comfortably in all sorts of places.
Feet have been another worry. Being at the extremity of paralysed limbs the quality is low. At times the flesh on my little toes have been in danger of breaking down and I’ve had to work on my feet to improve the quality. I used to have no feeling in my lower legs and once managed to burn a hole in myself on a quad bike engine. Just like pressure sores, these sorts of injuries in a paralysed body do not heal on their own, but I got to work on it with manual techniques and healed it just fine. These days I take better care of myself, but if I was to risk burning myself again I think I’d feel it and with greatly improved flow down into the legs my feet are in so much better shape than they used to be.
When I first banned my wheelchair from most of my house, I wondered if I’d made a big mistake. I could barely crawl at the time, and certainly couldn’t crawl with proper use of the legs, and moving myself around with my arms was tiring. I use my wheelchair in the kitchen and bathroom, but then there’s a bench across the doorway into the rest of the house (see blog posts ‘The Heart of the Home’ and ‘The Comfort of Home’). I’m always up for a challenge and stuck with it and I’m glad I did. I move around with such ease these days that I take it for granted and forget just how much of a challenge it once was.
After all these years of laying down the foundations, the structural form of my body is really shaping up. Walking may still be some years away, but to be honest if I never walk again it’s really not that important (I’ll do it anyway though just to prove it’s possibe). What matters is to live comfortably in a body that has quality to it and more and more is that quality improving. There was a time when it was impossible to find a comfortable position and everything required effort. Now I have the ability to ‘simply be’ and very much enjoy the comfort and peace that goes with it.