Life is a contradiction.
I find myself wanting to withdraw more and more from this MND world. I find it difficult when I read stories of people who have lost loved ones and I find myself going into shut down mode as a form of self protection. I have no problem whatsoever talking about MND or talking to others in a similar position, but sometimes I'm just not wanting to face others pain because it is a little like looking at my future self and sometimes that is just too much to bare. At the same time of course I feel the deepest sympathy for anyone going or having gone through this too. I hope my self protection doesn't make me seem too selfish. It's just something I do when life gets too painful. I try to distract myself instead by painting, or listening to my favourite artists or by driving others nuts promoting Chloe's music, anything other than thinking about MND 24/7.
We may try to pretend this isn't happening, but we face it everyday and I hate how this has all become so normal. I hate that Chris's choking episodes have become part of everyday life, I hate, in a wierd way, that we don't panic about it anymore but just deal with it. I hate that it is happening more and sometimes just from a build up of saliva in his mouth. I hate that Chris having to use walking aids and a wheelchair is second nature now, I hate that this once fit and active man sometimes has to feel his way round the house as if he were in the dark. I hate how Chris can no longer eat many of the foods he loves. I hate how it is just normal now to attach him to an enteral pump for an overnight feed to keep up his nutrition. I hate how our early morning alarm call is now the pump alarm telling us it is empty and needs to be flushed. I hate how we have gotten used to all of this.
Inspite of all this hate for things beyond our control, there is is also a lot of love. Love for each other and love for our family. I love the time we spend together now, whereas before Chris was always working. I love that Chris can still get out on the farm everyday for a few hours, except in the rain, and still do some of the things he used to do. I love that someone gave him an old mobility scooter and that on the farm at least, he still has some independence. I love how Chris can still smile and be happy inspite of it all. I love that he is the balance in our life.
So life truly is a contradiction. The time will come in the future when I will be able to face things and fight back and fight for others, for now we live for us, one day at a time, even I, this control freak who always needs to plan, is learning to take life one day at a time.
