I seem to be asked this question more and more frequently of late. And depending on what time of what day I am asked, the answer will vary enormously. Other questions are asked under the same guise, such as do I not feel angry or cheated about how cruel the situation is.
The way I feel about our predicament is very difficult to verbalise, let alone write down on the blog. Obviously, there have been stages. Stage one was disbelief tinted with dread as I was given the diagnosis. Having been here before with dad, it was never going to be pleasant. Stage two was to ignore it for as long as possible in order to enjoy every possible second with my beautiful wife and newborn son in our newly bought family home. Stage three arrived when it was no longer possible or realistic to ignore the symptoms. Until this time we had been enjoying a relatively normal existence in our new house, having fun with our friends and I was enjoying a full-time position in an architecture practice where I ran a project for a £50 million cardiac and renal centre for Cork University Hospital. For those who are unaware of the time line, we moved to Harrogate when I was walking with a limp on one leg and using a walking stick in April 2008. By today my movement is limited to slight movements of the neck, speaking and swallowing. Given the speed of this progression I think I’m probably on stage 75 but I have no idea what happened between now and stage three.
I do know that we have had a colossal amount of help from some very special people, friends and family alike. They feed me, dress me, allow me to go to the toilet, help me with itches in places from the ordinary to the extra ordinary, as well as every other conceivable daily function. These people, by just being as they are, allow me to continue just being as I am. Sure, everybody has good days and bad days. I know when I have a bad day because I can feel a river of rage bubble up to the surface and one of these people I mentioned will, for reasons I know fine well, receive the sharper edge of my tongue or be cold shouldered completely.
Most of the reasons I feel I have conquered. Such as being forced to leave family and friends, being forced to leave Louise because I am confident she will succeed in every aspect of her future life, and even being wrenched from Oscar as I consider myself fortunate to ever have known him. You also know that I have spent a considerable amount of time and soul-searching when writing him his letter and creating his memory box. This is not to impart knowledge to him, as he will have the human Encyclopaedia Britannica in his immediate and extended family. The reasons for doing it is to give him an idea of what I was about.
I feel I have done this to the best of my ability and can offer him no more.
The one and only remaining reason for this river to break the surface is very very simple. Jealousy. This ranges from something as banal as someone lifting a cup to the more deep-rooted acts such as anything involving Oscar as I struggle to be a good dad, from this chair, whilst our dearest and most precious companions through life step up to do those father-son things I cannot. Similarly, every hug Louise is given reminds me that I cannot look after her as I always had intended.
I am absolutely convinced that my remaining anger and disappointment will never dissipate. Nor would I want it to. Because the remaining jealousy and anger are now providing the fuel for the fire as we fight to find a cure for this bastard of a disease.
However, there’s always the possibility that all of this is caused by a bee sting in the eye whilst riding my motorbike last October. Alright, unlikely I know but you’ve always got to carry hope, even if we are only hoping for an extra day.
I hope this post helps you understand a little better how motor neuron disease sufferers feel and why it is so important that we fix it.
All my love,
All I can add to this is to acknowledge how it makes me really feel… If I am to lose my dignity through disease in the future, then please let me also lose my mind. – Louise (2013)