When I read of the sad case of Nancy Fitzmaurice and the battle to end her life, I found myself in tears. Whatever the intricacies of this case, I also felt saddened by the way this child's death highlights changes within society towards illness, disability and the concept of quality of life. Anyone who knows me, or who reads my output on this esteemed online publication, knows I am passionately anti-assisted dying or euthanasia. For many people who are in favour, their support revolves around beliefs on "suffering" and the aforementioned "quality of life", pain being at the center of their concerns. What troubles me is that very few of the people so deeply worried about pain have ever experienced it, and most of those who have have done so second hand, normally watching a loved one at the end of their life. I fully appreciate how hard it is to witness someone in the grip of pain, but I truly believe that unless a person knows what it is to live with pain personally they cannot understand how it impacts on a person, both physically and mentally.
Baby Mik (aged 6 weeks), at GOSH, smiling after surgery to remove my tumour.
I was born with cancer, and during a recent chat with a pain specialist I discovered I was probably in pain well before I was born. I am now fast approaching fifty and for all of those years I have lived with chronic pain. I have experienced pain in all it's guises, from the throb that starts a whisper that becomes an deafening shout through to the agonizing tearing stabbing pain that steals your breath and is all you can think about. So I feel I can comment of the concept of pain and how it might impact on quality of life from a position of informed personal knowledge. It is actually possible to make pain part of your life and once you have achieved that, not only can you lead a normal life but you also awake each day with an amazing sense of accomplishment. You find yourself overjoyed as you internally exclaim "I am the master of my own life, and my own body!" This will sound strange to all those who have never known chronic pain, but I expect all those who have will be shouting "hell yeah!"
It is vital to understand what pain is. It is a function of the nervous system to inform the brain of illness, injury or change in function that may be detrimental to well being. The causes of chronic pain are mainly two fold. Either there is an actual issue somewhere in the body that hurts without chance of being cured, or that the actual mechanics of pain are damaged so that you feel pain while there is no real physical cause. I experience both of these. I have several painful medical issues that are untreatable as well as having trapped nerves in my spine that constantly send false pain signals. I also experience a break through pain, which is even greater than that I live with on daily basis, usually when the trapped nerves themselves get injured or I hurt myself in a place the trapped nerves are already saying is injured. I know how constant pain can impact on your mind. It can eat away at who you are in such a way that you loose yourself. In those moments you seek any answers, and some may consider one that is very permanent. But this is a passing stage and I would hope we might consider these moments in the same way as we view a mental health crisis, not cause to allow someone to die. I know many sick and disabled people who also live with chronic pain and not one of them decries the pain as a reason to die, yet the wider public still sees pain as something so terrible that death is a preferable alternative.
All of us who live with pain fully understand that the wider public's attitude towards what we see as usual is based on fear. They equate their reaction to the worst pain they've experienced, extrapolate it up and then worry about their ability to cope. The same is at the root of how people react to my using a wheelchair. They cannot see how they could "live like me" and thus call me an inspiration for living as I do, happily and successfully. Yet I see my pain and my inability to walk as the same, something that I have no choice over that causes me to just get on with it. However, I also feel that I, and so many of the sick and disabled people I know, have done much more than get on with it, we've have built lives. Lives worthy of envy. When people say that killing sick and disabled children is an act of mercy, remember I was once a very sick disabled child, riddled with cancer in screaming agony, that was given five years at most to live. Yet here I am today, nearly fifty, with a life behind me worthy of a best seller (autobiography is written publishers so get bidding now!). It is not a cut and dried issue, as a prognosis may not always correct and medicine advances every day.
Please before you pass judgement on anyone's quality of life, stop and think. Don't just claim "I couldn't cope", as I really think you could. Pain, like many other trials in life, can be beaten. It can be medically treated and psychologically mastered, with help, and so we need to have a sensible debate on quality of life before we go any further down a road that may be very hard to come back from.
Remember, until you have wheeled a mile in my shoes you cannot really know what it is to be me.