Living with Motor Neuron Disease
I would like to share with you the true story of a man who stands seriously in need of healing at so many levels that you might seriously remember him in your prayers. The reason I am sharing this story is because it contains so many lessons that may be relevant to many of us, especially if we have some medical challenge. This man in his early 50’s is from the Limerick region who came to visit recently along with his wife. For a few years he had felt something wrong with his speech and six months ago following tests was diagnosed with Motor Neuron Disease.
As you know its one of the most crippling progressive diseases and the most devastating of diagnoses that any human being could be landed with. Needless to say his smiling exterior disguised a lot of fear and inner turmoil. By profession he was a farm manager and while for the moment he was able to continue his work, his hands were beginning to shake and he wondered how long he could continue. For someone whose entire life and identity revolved around work the prospect of being able to do little or nothing was quite terrifying.
Where do you begin with someone like that for whom the medical profession can offer little or no hope. As Christians we say so easily that Christ has conquered death, so that means that he has also conquered motor neuron disease, but how can this truth of faith become real in the life of someone who is suffering from the disease? How can that dreaded label ‘incurable’ be transformed into, ‘curable from within?
The medical profession were in fact making his condition far worse than it was. Every month he was given an appointment in Beaumount Hospital for 10am to meet with a specialist. Dozens of others, all suffering from the same disease, were also scheduled for the same time and it would be evening before he would get out. So for six hours he was rubbing shoulders with unfortunates, some of whom were in the last and most frightening stages of the disease. They were mirrors for him of the worst possible scenario for his future. He would come home devastated, and take up to two weeks to recover. Such practice amounts to medical abuse and ensures that even if the disease doesn’t kill the person the diagnosis certainly will. Luckily he was beginning to follow his own wisdom by saying ‘no thank you’ to future appointments.
It was obvious that he was living in the future and haunted by the worst possible prospects. His fear was such that he was already there and that’s what fear does; it robs us of the precious time we have be it long or short. I remember a man who was diagnosed with cancer and given a few years to live. His wife said afterwards that her big regret was that they allowed fear to rob them of those precious years as if they never happened. I explained to my friend that while we may have discomfort in the present, suffering only comes from either living in the past with regrets, or the future with worry and fear, or often a combination of both. There is no suffering in the present so how do we get to that place. Again I explained to him that past events like loss can rob us of hope for the future and so make our future far worse than it needs to be.
He then went on to talk about his father, who he was very close to, dying while he was still a teenager, and a few years later losing his best friend in a car accident. Not long afterwards another close friend died of cancer. He then admitted that instead of dealing with those losses he had buried himself in work, and rarely if ever took time out for himself. In effect he was still holding on to those three people and needed to release them to the light. So we did a ritual of letting go where I reminded him that to hold on to someone in life is called control so why should we call it anything else when we hold on to someone who has died? He had always hated controlling behavior and when he discovered it in himself, and what he was doing, it came as quite a shock.
Its very hard to say, but not difficult to consider, that a lifetime of suppressed emotions and grief may well have contributed to his condition especially when you consider that in blocking out those emotions he had effectively shut down on his entire emotional life. Our emotions are like the old Christmas tree lights; when one bulb went they all went, we cannot block out one emotion without blocking them all. So while we can’t be sure of what caused his condition we can point out certain things that can greatly improve his overall state of well-being and even boost his chances of recovery.
One of those would be encouraging him to become involved in something other than work that would awaken his creativity. There’s nothing like a project or hobby to boost the immune system that has an amazing capacity to fight all sorts of diseases provided we keep it at optimum level. All stress and tension has the effect of lowering it, and that’s when we are most open all the bugs and viruses that are all around us.
That brings us to the next point: Stress is a killer so avoiding it as much as possible is so crucial for recovery. A piece of wisdom on the Causeway to the Pilgrimage Route says; ‘Its never the water in the ocean that sinks the boat but what we allow on board.’ The boat for him was already overloaded with too much work so he needed to offload as well as watching out for the things that might get to him and cause him to leak; like spending a day with terminally ill patients.
Its often been said that more people die from a serious diagnosis than from the disease they are diagnosed with. Part of the reason is that it’s all too easy to become so identified with the disease that it becomes ones badge of identity. Many who are diagnosed with cancer react on such a way that they don’t just have cancer but they allow the cancer to have them. In other words they eat sleep and breathe the disease, night noon and morning, to the extent that they have no other life apart from the disease. That form of fear is even more fatal than the disease. The first step of healing is to always see oneself as bigger then any disease and to never allow it to take over ones whole life.
Finally it helps a lot to avoid using expressions like fighting or battling a disease as if it were an enemy that needed to be subdued. If it’s in our lives it has a lot of important lessons to teach us and it may even be there not to kill us but to cure us. For that reason it so important that we co-operate with the disease as a friend rather than a foe. For some that may sound very challenging but remember Christ did say love the enemy and the enemy is often more within than without.