I was down the street yesterday and there was an old woman and her son (?) he was about 40 and in an electric chair just like Don’s was. He looked as if he had Muscular Dystrophy or MS or something. Intelligent eyes above a severely twisted body. She was giving him his lunch, and it took ages for him to be able to swallow…each swallow was an effort. She was in no hurry. It was all calm and quite beautiful in its own way. You could see the love between them. Then he had a drink and almost couldn’t catch his breath. She was helpful but not panicky . It made me cry and I had to leave. People have no idea of the love that grows like this. Life is more precious because it can go at any time, any day. And no doubt people assume as friends of ours did assume that it was all “suffering” when I was not. We had so much fun and no doubt this pair did also.
A person I know here wrote a letter to the editor in support of our cause, after the Medical Anon letter. She was too late to have it printed but she gave it to me anyway. One paragraph was just so beautiful. I had not realised that people assumed our lives must be ones of suffering but obviously people did. This is what she wrote,
"Anyone who has visited the Mackay home would have seen on walls and dressers, a living testament of the loving family life the Mackay's shared - letters, funny drawings, handwritten poems by the children, photographs of special occasions, the dressing up games and plays they put on, and family gatherings. Dozens of them all so clearly showing a family at peace with themselves and so creative in having fun despite Don's Quadriplegia. The loving bonds between them and the strength and
supportiveness of that family was a revelation to me and would be to anonymous too I imagine. I had always thought that a tragedy like Don's accident and subsequent Quadriplegia could only lead to a life of suffering. Now I see how strongly it can unite a family. Don was the wise elder of the clan with still a bit of the larrikin in him. His life was of great value... "I felt so humbled when I read this, but what really surprised me was that people thought we must have suffering sorts of lives. This thought never occurred to me in the 25 years of Don's injury.
And the funny thing is that when you or a family member has a severe disability its sort of as if you become public property... in that people make assumptions about how it must be in the privacy of your home, when I know with my few married couple acquaintances the thought has never really occurred to me. I may have thought that he or she was a bit of a mongrel bastard or something and I wouldn't want to be married to them, but the inner workings of their lives never crossed my mind.
Our complete lack of privacy rankled us both... but it was something we had to accept, as it was impossible for us to exist without outside nursing help. The cost of staying sane for me, met I had to accept that bit of nursing care which got Don up in the morning while I had a bit of quiet time.
At times it felt like we were living in a fishbowl, having to accept that nurses we employed, came to the house for two hours each morning and that they would bring all their emotional shit with them and lay it about our shoulders before many people had even gotten out of bed. Poor Don would be trapped in the shower while they rattled on about their aches and pains, about their kids problems ect etc... and in the middle of this I would hear his quiet voice talking to them and telling them good things as almost a sort of older brother...
He would come out and look at me sometimes exhausted already from their shit... cross his eyes and pull faces that they couldn't see but I could...
It just all came to me watching that mum and son or whatever... I also shouldn't assume what they are to each other... but I can assume about the great love between them because it was as visible as if they were tied together with a golden cord.
It is morning now again. The nights are too long these days. The angel of the morning has strobed its light amongst the dark tree tops and I know I will be okay again. Its a one day at a time thing for me.
I had some really bad news yesterday from the Health Care Complaints Commission which I may post about some time or not...I also had a very disturbing email from my youngest sister in New Zealand, who couldn't be bothered returning my calls, but could take the time to email to me something which obviously she did not have the courage to say to me. I will no doubt be dealing with the consequences of her onslaught today. She's the family's "golden child" still at 45. I used to be so close to her once. Its still worth saving but I am not in the frame of mind to do to much about it right now...just flat out getting through these days.
