2nd July 2003 – 12th February 2019
2nd July 2003 – 12th February 2019
It’s been a very busy and intense few years since my last post. I’ve had more heartbreak since losing Murphy. The time has now come for the Limping Cyclist to ride again and I have a lot of training to do.
The reasons for my absence from WordPress and renewed motivation for cycling will be revealed soon.
The National Cycle Collection in Llandrindod Wells is housed in the Automobile Palace, a 1909 car showroom converted into offices and a display area for bikes. The eclectic collection contains examples of the earliest two wheeled hobby horses, penny farthings, early “safety bicycles” and classic steel racing bikes before entering the modern era with one of Chris Boardman’s carbon Lotus bikes and Bruce Bursford’s Ultimate record breaking bike. In additon to the bikes on show, there are wall displays and cabinets crammed with cycling history.
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.
I know you’re speaking to me, but I can’t hear you. I know the flames are searing my skin, the lightening bolt is twisting my sinews, but you carry on talking as if everything is normal as a knife penetrates to my hip. “How do you look so well?” she asks me, when you’re [supposed] to be in so much pain. “A good sense of humour and factor 50 sunblock”, I facetiously reply.
The Truth. Because I’ve learnt to be a great actress. There should be a chronic pain Oscar for the best fake look of serenity, the most convincing insincere look of interest and most misleadingly deceptive smile. Acting this much is exhausting. I’m so tired.
Why? Because if you know the truth, I’ll have to observe your expression of embarrased horror. Because I don’t want you to feel uncomfortable and avoid me. Because you can’t handle the truth of my suffering. Becaue you’re afraid of what you can’t understand. But most of all, because I don’t want your pity.
Today is a special day. A milestone. Exactly ten years ago today I adopted Murphy from a dog rescue centre. He was about 20 months old, nervous, slightly underweight and infested with fleas and ticks. It was a Saturday and I was looking for a small smooth haired dog, but as soon as I saw large shaggy Murphy (his original name) I knew I’d be taking him home with me.
The man who owned this small independent shelter, quite literally in the garden of his home, was concerned I wouldn’t be able to cope with Murphy. He was very strong (still is), hardly trained and had spent most of his young life roaming free across a housing estate and fending for himself, but I was willing to take on the challenge and I’ve never regretted that decision.
Murphy was a troubled dog ten years ago, and I had to learn how to help him. He was petrified of fireworks to the extent that I had to literally hug him until they stopped. I remember the first time he saw me taking the belt off my jeans to put them in the washing machine, he immediately cowered down in terror as if bracing himself for a violent beating. The same thing happened the first time I took him for a walk in the country and picked up a stick to throw, he cowered and wimpered, then ran away. Other incidents at home would send him into a disturbing flashback where he would dart for cover under a table and his wide eyes filled with blank fear as if he couldn’t see or hear me. It’s hard to believe now because everyone who knows him encounters a confident, happy, mischievous but above all loving dog.
I gave Murphy all the patience, care and love I could when he needed me, even though I wasn’t an ideal dog owner and had a lot to learn. I took him to dog (and owner) training classes, paid the bills when he tried to eat my car and collected him from the police station when he ran away. Gradually, he settled down, put his terrible past behind him and when I became a chronic pain patient he rewarded me by becoming my emotional assistance dog. Dogs, like humans, respond to love. He’s a treasure, as is my other younger rescue dog and today they’ve celebrated with a lunch of fat juicy cooked sausages.
Happy anniversary Murphy.