Days and weeks are made bearable by people who understand, and by my knowledge that I am more than the pain.
Check out Kieren’s account of his bike race from London to Edinborough last year here.
There’s something about writing about yourself; it can feel a little clumsy or foreign. I suppose that is because you spend your life writing about other things; historical battles or glaciers at school, legal concepts or whatever at university, and finally this month’s figures at work. Whilst all of this writing develops certain skills and abilities, writing about me is a whole different thing. What is “my story”? How do I express in words the mixture of experiences – positive and negative – that I associate with PC?
Let me begin at the beginning; I am no Tarantino, and my understanding and coping with PC have developed across my life, so I would like to trace that from the start to today.
When I was a little boy, PC was a horror. I was different, I was in pain, and no one really understood. People called me lazy, and often smelly. I had secondary infections that smelt really awful. I was like a walking mature Stilton. I realize now though that of all the elements of my horror – pain, difference, and misunderstanding – it was the pain that was actually the least important. Being different was initially a problem because I was excluded – I couldn’t play rugby, football, etc. – and because I didn’t play sports I also missed out on much social contact that came from being involved in sports. I don’t know if it’s different for girls, I guess PC brings its own problems for women – but as a boy I just wasn’t involved with much of what was valued by boys – being the fastest, strongest, and the best fighter. As I got older, difference meant something else. It meant not being normal and feeling my separateness and women scared me more than anything else. The thought of being intimate with women – which all the other teenage boys were beginning to do – was perhaps the most daunting thing I could think of. Clearly, this sapped me of anything remotely resembling confidence, something I didn’t really understand till later; but this exacerbated my difference and my separateness from others.
Not being understood was hard. People would interpret my being inactive and reluctance to move around as laziness, and that hurt. The unfortunate thing about the idea that body, mind, and soul are linked is that when one goes wrong – in this case the body – the others tend to suffer as well. Looking back, I realize that the problem with my body made me really unmotivated, and this exacerbated people’s perception of me as lazy. They just didn’t understand and I was truly alone. Add to that loneliness and a good dash of pain, and by the time I was 18 I was thinking about ending my life on a regular basis… So what changed?
When I was 20 I was thrown out of Durham University. I was thrown out because I had become so depressed that I had not attended a single lecture, not responded to a single letter from my tutors, and had basically gone right off the rails. I was told by Durham that if I could get a reference from an employer saying I had attended a job every day for 6 months, and from a psychologist saying I was stable, then I would be allowed to re-enroll. So I started seeing a psychologist and got a job. It is perhaps sad that the first person I have really related to about my PC was a paid professional, but that’s the way it went. That relating – that understanding – changed everything.
Understanding came on two levels. The first was realizing that I needed to communicate with others, tell them about the pain, educate them, ask them for help, and often it would be forthcoming. It’s difficult because it felt somehow belittling to ask for help, but the reality is that it is empowering. I made myself little – less-able – by not asking and not telling. Now, I have so many opportunities I can take because people help me take them. Equally, if I explain to people where I am in my mood/pain – perhaps today is a bad day – then life tends to run smoother. There are less arguments, less tension, and less guilt.
A second level of understanding is that which comes within oneself: learning to listen to my body, learning to forgive myself, and ultimately learning to cope with my PC. The problem with living within a society of “normal” people is that an abnormal person – like my good self – internalizes these so-called “normal” capabilities. As a younger man, I really felt that what I was being told I was – lazy – was what I was. Subsequently, I carried a lot of guilt and shame about being such a person. Equally, I carried a great deal of anger – anger at myself for “failing” to live up to what was “normal.” Normal people played sport, normal people didn’t crawl at the age of 15 or 25, normal people could keep going throughout the day as long as their energy allowed (not as long as their foot pain allowed). Not being able to do what “normal” people could do made me angry with myself, but also at those around me for not understanding me. Now what I see is that I live in a world that wasn’t really built for me, and that really isn’t my fault. Stairs, massive airports, bus stops half a block away etc. are built for “normal” people. That is not something I need to feel guilty about, and that is not something I need to feel shame about.
I have grown to love being different. I love the fact that I have got to the age of 35, traveled, met so many people, done so many different things, and not let PC stop me. I’ve done more than many men, and I’ve done so in spite of pain and limitations. But what I know with a certainty that borders on religious fervor is that it was through understanding that I feel the way I do now.
I should add that in writing “my story” I have concentrated a lot on me. That’s fine, but I should also give credit where credit is due. I am very lucky that I have the friends and family that I do. Yes, I have sucked up the pain and got on with it; but equally my friends have carried me – literally – to places, from places, and thus made my world bigger. My friends and sisters have given me a shoulder to lean or cry on, given me a piggy back – even now I am 35 – and carried my bags for me. They have taken the car when they would have otherwise walked and walked beside me as I cycled somewhat precariously next to them. Bouncers have been argued with in my name, unnecessary idiots put in their place for me, shops gone to and more. Moreover, these lovely people have put up with cancellations and changes of plans galore, and generally treated me like a prince when I often haven’t deserved it. My friends put up with my moods and still show me care and consideration in ways that I probably haven’t always appreciated or deserved. If you’re reading this, thank you.
Don’t get me wrong, I still have days were the pain drives me to tears and weeks when I have to cancel my plans because taking more painkillers really isn’t a good idea. However, these days and weeks are made bearable by people who understand, and by my knowledge that I am more than the pain.