I have always said I wouldn’t write an article about my multiple sclerosis. It was diagnosed in 2003. For the past 13 years I have ignored this fact, as far as possible, and have treated the diagnosis with the contempt I believed it deserved, perhaps in the hope it might go away.
“Hope” is an important word, because a certain degree of relief came with my diagnosis – it wasn’t something worse. I am one of many others living with a similar diagnosis, and I have been extraordinarily lucky so far: no motor symptoms and, interestingly, since the birth of my eldest son, fewer sensory symptoms. The fatigue can be difficult and there are other challenges, but I can function.
I’m married with two young sons. I write freelance for the Church press, have authored a couple of education titles and am a qualified teacher with a PhD in education. I work part time as an administrator for my parish priest and am chair of governors at the local Catholic primary school, where my sons are pupils. With the exception of my teaching qualification, all of this has been achieved since my diagnosis. There are those who think I should do less. But I have done (and do) these things because I can. And I am grateful that I can.
Until now only my closest friends, and those who needed to know, have been aware of my condition. I refuse to be defined by it. But I started thinking about writing this article earlier in the year, when I met Sheila, whom I was interviewing for an article about the work of the local food bank during the Christmas and New Year period. I suddenly told her – why I don’t know – about my MS.
When I tell my GP that I don’t really want to engage with my condition, but would rather ignore it and treat it with contempt, he smiles and agrees that this is a healthy attitude. Sheila’s reaction was different, however. “You shouldn’t treat it with contempt,” she said. “It is a part of you, to be embraced.”
Sheila’s words immediately put me in mind of Mo Mowlam, and a scene from the biopic Mo, starring Julie Walters. Towards the end of the film, Mo’s doctor pays her a visit and explains that her brain tumour was there long before she even noticed any of the symptoms it caused. She could have had the tumour for more than 20 years. She asks her doctor if the symptoms, the disinhibition and the personality change, can go back 20 years. The doctor says yes. She replies: “So, good old Mo, the Mo that everybody loves, larger-than-life Mo, that could all be because of the tumour?” She wonders what part of her personality is really her, and what part is the tumour.
I have spent some time reflecting on Sheila’s words to me. In one way, they were a relief. If I accepted my MS as a part of myself and who I am, then I wouldn’t have to fight it any more, or drive myself quite so hard to try to prove I was in charge of it, rather than the other way around. I sometimes think about other opportunities I might have taken had it not been for the MS, and how life might have been different. But this is how it is. And I have begun to think that maybe this is how it was meant to be.
What makes us who we are? God told Moses: “I am who I am” (Exodus 3:14). We are made in the image of a likeness of God. So, we are who we are. But that is more than blood and bone. More than DNA. How interesting that, although the Archbishop of Canterbury, Justin Welby, said that the news that his real father was Anthony Montague-Brown came as a “complete surprise”, he also said: “There is no existential crisis, and no resentment against anyone. My identity is founded in who I am in Christ.”
It is in recognising Christ that we understand who we are. Look at Peter’s profession of faith in Matthew’s Gospel. “Who do you say I am?” Jesus asks his disciples. “You are the Christ,” responds Peter, “the Son of the living God.” Jesus replies: “So I now say to you: You are Peter and on this rock I will build my Church” (Matthew 16:15-19). Peter recognises Christ, and Christ’s immediate response is to tell Peter who he is.
At Canterbury Cathedral, suspended above the site of the first tomb of St Thomas Becket, is a 6ft sculpture by Antony Gormley. The piece, called Transport, is made from old iron nails taken from the cathedral’s repaired roof. Our bodies are our transport through life, and through which we pass. “We are all temporary inhabitants of a body,” Gormley has said. “It is our house, instrument and medium. Through it, all impressions of the world come and from it all our acts, thoughts and feelings are communicated.”
Our acts, thoughts and feelings are perhaps the essence of who we are. But illness has an impact on this, and therefore a part in shaping who we are. Issues concerning our physical selves and our identity can be difficult, especially when it comes to neurological conditions and dementia. But Justin Welby is right about rooting ourselves in Christ: a person’s identity can be held by God, even when they can’t be sure of it themselves any more.
I recall, years before my diagnosis, overhearing a conversation about someone who was ill, and how this person had “found God”. The conversation was sympathetic, but insinuated that those who were ill turn to religion because their circumstances are difficult and this is their last vain refuge: “Poor thing, it’s all she’s got left.”
I turned to God at the time of my diagnosis not because I felt hopeless, but because it is rude not to talk to someone standing right next to you, and Jesus was there, day and night, right by my side. Talking to him was easy at that time. Jesus needed help to carry his Cross, and he is ready to help us carry our own. We are not self-sufficient. We all need each other.
The theologian Kathryn Greene-McCreight writes something quite beautiful in her book I Am With You: “The people of God is not just a collection of individuals, but a web of relationships created by God. We are not our own. We are not on our own.” This is one of the things my MS has taught me, one of the ways it has shaped me, and made me who I am.
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