I'm generally pretty upbeat about being paralysed from my chest down. I talk about the free(ish) car, the free tickets, the VIP airport treatment. I have my hands, which are a lot more useful than legs. I don't need a carer. I'm independent. The list goes on: there are many positives, and I'm a positive kind of person.
But there's a danger in this approach. Too much emphasis on my being ok can deny the reality of the spinal cord injury I live with. And I sometimes think people forget I'm paralysed. I like that but it can also be frustrating at times. Because the reality of my life can be summed up in one word: hard. My life is much tougher than it used to be. I'm in constant pain. I get far more tired. I fear leaking and the humiliation of leaking in public. Getting dressed is a struggle and changing trousers in a wheelchair is impossible. I worry about falling out, especially crossing roads at night in London when I can't see the potholes. I can't jump kerbs easily. I have to ask for help pushing up hills. I can't reach many shelves. Shopping is no longer a solo activity. I have to book accessible restaurants. I can't go rock-pooling with my children. I can't chase them over fields. I sometimes fall when transferring from bed to chair or chair to sofa. If I fall upstairs it takes me five minutes and a lot of dragging to get back up again. It's far harder to lose weight once gained (and it tends to go straight to my waist). My trousers usually slip lower when I transfer out of my car and I have to ask strangers to pull them up. I can't feel touch below my injury: a massage is no longer a wondrous whole-body experience. I can't do much yoga any more. I have to carefully check surfaces before I transfer: if I sit on a pen, say, it could lead to a pressure sore. I can't make subtle entrances if I'm late for meetings. Staying dry in the rain is no longer possible. I can't stay at or visit any of my friends' houses in London because they all have steps. I can't get to Griffin's room because the stairlift only reaches Arden's. I can't get out of my chair to have a picnic unless helped. I'm always anxious wheeling with hot drinks because if they spill, I won't feel the liquid as it burns into my leg. I'm covered in scars on said legs from such burns. I'm almost always cold...
Oh the list is endless. It goes on and on and on and it's somewhat depressing re-reading it. Of course there are ways round most of these challenges. But today I'm accepting and explaining the reality of spinal cord injury: life is tougher than before.
