Sir, – Reading Brenda Maguire’s letter (October 2nd) prompts me to write. Finally individual voices are redressing the balance in the perception of Motor Neuron Disease.
Five years ago I was diagnosed with MND. It is a bad thing to happen to a person. But bad things happen. That’s life. We only know they’re bad because we measure them against things we consider good. And I have a lot of good things in my life.
People often think it’s tragic, to have to bear such a burden, but, for me, the only tragic life is the one that knows no love. And, thankfully, I have love in my life.
The patient knows more about their condition than anyone. But in my experience this idea is laughable to the majority of consultants. And when a consultant ceases to believe he or she has anything to learn from the patient, bad things happen. Voices are lost. The voice of the patient.
The general perception is that MND is something impossible to live with.
Obviously, general perceptions expressed in passing conversation don’t impact to the same degree as the context of a hospital, where the general perceptions of MND can literally mean the difference between life and death. As I found out.
What astounds me is that a debate around this particular subject exists at all. That if someone expresses a desire to live, and the means for that life exists, that that isn’t enough. No, not in Ireland. It isn’t enough that someone says “Yes I want to live this way”. And it’s not a debate anyway, call it what it is: a fight. I had to fight for the right to live. That is not right.
How many other people with MND will have to fight consultants tooth and nail for the right to live? How many people with MND will die because they have no one to fight for them? No one to support them? No one to advocate on their behalf? How many voices need to speak before the consultants involved realise that only the individual with MND can decide what constitutes a standard of living? – Yours, etc,