Realisation took a while to arrive but it occurred to me one day that I may be disabled. The circumstances of my life crept up on me so insidiously that I didn’t even know what I was. I mean am. Two and a half years ago I was an active woman leading an average life and doing normal stuff like going to work, doing the housework, walking the dogs. My only problem was a slightly vunerable back resulting from two episodes of nerve compression from disc herniation and a subsequent lumber spine surgery. Then one day my spine gave up on me again, and the real nightmare began.
It began with electric pain in my lumber spine , fire down the outside of my right leg, a limp and a walking stick. Two and a half years later the pain has spread to my pelvis, the front of my right leg, further into my right foot and it’s making rapid progress down my left leg. In fact it reached my left foot last night. The episodes of weakness in my right leg have reached the point where I use crutches to walk up the garden, I need a wheelchair to go shopping, grab rails to safely get in and out of the shower and a rail to help me get out of bed. My morphine usage has escalated and I’ve been trialling Gabapentin and Amytriptyline in dosages used for neuropathic pain. TENS doesn’t work for me. Specific exercises do help and I do these exercises with obsessive zeal. I practice activity pacing, I’m highly self aware of my body, I’m careful about what I eat to maintain good health and I’ve lost a lot of weight. I’m doing everything I’m supposed to do to help myself and I continue my bloody minded fight to stay fit.
The severity does vary from day to day, hour to hour and even minute to minute, but the trajectory of my condition has been generally downhill. Then I had an epiphany, “I’ve become a disabled person. How the **** did that happen? I don’t remember having a dramatic accident or waking up in hospital after an illness. My GP and past consultants don’t seem to be the slightest bit concerned. Am I missing something here?” It’s not as if you’re given a booklet entitled “Welcome to Disability” to mark the transition of life from “able bodied” to “disabled”. It was around this time that a new friend, also in chronic pain, directed me to the BBC Ouch! podcast. I felt like a fraud, an outsider, when I first listened to it. I’d already taken some time to come to terms with the wheelchair because I felt such a phoney. I’m not paraplegic. I’m not an amputee. I have terrible pain and my right leg has an annoying habit of going on strike, but does that give me the right to use a wheelchair and to identify myself with the label “disabled”? When a medical condition is slowly progressive, at what point does a person become “disabled”? Can I now use the politically incorrect but reclaimed term “crip”, because I am one?
I was recently listening to a Radio 4 comedy programme about people’s attitudes towards the wheelchair and wheelchair users. The presenter addressed the issue of the correct terminology surrounding disability and told a story in which he asked a wheelchair user what term she uses to describe the “able bodied”. Her reply struck me as being almost unbearably true, she called them the “not yet disabled’. On that disconcerting note, it’s time to finish this blog post.