Saturday, March 23, 2013

The Gift

The Gift.
Something that I have been considering a lot of late. I always felt this way but didn't put it into words. It’s something that those who have not experienced severe disability, their own or their close ones - might have considered. Then again one must not assume anything in this life.

Severe disability whether born with it, caused by illness or accident is very hard for the person disabled of course and as well, for those very close to them. My husband and I were together for 35 years. I am of the mind that after having the company and care of my husband Don for the 25 years of his Quadriplegia – I have been the luckiest person and so have our daughters been.

Of course I would have rather it never happened to him – but that it did we took the best from it.  After a period of settling which was scary for us both at times I learned so much from him. Despite his pain and restrictions, he had the most amazing outlook on life and rarely did a day pass than he surprised me with some thought or something wickedly funny. But I learned stuff. I learned compassion for his braveness. He wanted to live so badly and to see and do. In helping him here I as well learned to appreciate every moment and I lived in the present.

Helping to ease things for him was a privilege. Laughing with and about him and being in turn laughed about was wonderful. I was always surprised and often disappointed when people assumed they had the right to make assumptions on the quality of his life, of our life. I wouldn’t begin to judge the quality of anyone else’s life because you cannot know. But too often so called professionals did that and still do to the detriment of those they make judgements about.

How I felt about my life with Don was that I had come home – and sometimes in homes there are differences of opinion, sometimes words are spoken. Sometimes yes there are tears...but there was so much more to laugh about. Don was an amazing mimic, something I was reminded of yesterday by one of our girls. He loved to mimic those he didn’t think much about, the pompous, the ponderous and the pedantic... one time he was dragged over the coals by the so called “executive” of the Hospital Action Group of which he was Secretary because he claimed they were getting too friendly to Labor when we were meant to be a community group. Here they were all these ponces, Bob Carr acolytes giving him a good dressing down – very brave of them – but our old VW van nearly rocked itself all the way home that night by our combined laughter as he imitated them all so accurately – I had trouble seeing through the tears of laughter.

Don needn’t have been so special to be cared for and loved so much. Ordinary able bodied people are not expected to be special. In homes right across the world there are people in our situation or like. In the way that there is love and compassion between these people we can judge our level of civilisation.

To be able to help someone because it is the right thing to do and to fight so that they are never abused or put down as is becoming too popular with so called “modern” medicine is the gift. I feel gifted. I was looking at a photo of a young man with Cerebral Palsy and his brother was behind him helping him stand and enjoy time by the water – and thought what these two were experiencing – knowing the family and their wonderful attitude – you cannot put a value on this sort of thing. Their faces were wonderful to see and I felt humbled.

The depth of love we had just as life partners, husband and wife was and is very strong. We came to feel as one person in many ways – but some will understand this – there is a greater depth that comes from having the time we had together in this manner – it’s on another level and I don’t have the words to describe it. I will try. Mostly I felt that there was a light around our family. I didn’t see that light physically but it felt a small bit how I imagine Heaven might feel.

Of course there was so much pain for Don, and there was so much he couldn’t do, but I grew not to notice these things apart from the pain which he never complained about – I grew to see what he could do and that I could be there with and for him, not as a duty but as a blessing for me – has left me understanding more about what it really means to be human.

It’s not all about us and what we look like, what we can own and who we can impress. It’s not about losing part of your life as some assume – For me as I went to sleep beside him, sometimes not knowing if we would both be alive the next day, it was about the time we had together. I wish that every single person with illness or disability has someone beside them who just loves them – that’s all. I know we are a long way from this state of affairs – maybe in a parallel universe we have got it right but here on Earth we have a huge way to go. I would like to say I think attitudes are improving but I can’t say this from my observation.

Sadly in many modern hospitals the Eugenics movement is alive and well as patients whose doctors consider that certain patients are “not fit to live” of are for “Futile Care”, are encouraged by being given the worst case scenario about their condition, and are enticed into what is called in the US, “Comfort Care” which involves withdrawing the ventilator and feeding tubes etc. Given another point of view and some decent rehab and support, the outlook can be so much different. I was amazed at the lack of rehab for Spinal patients such as my husband in today’s hospitals. Physio and Rehab was a priority in the 1980s in Australia... not so these days when a new Quadriplegic is encouraged by his doctor to have the ventilator removed only months after his accident and is allowed to die. This “choosing” to die is treated like some romantic drama by most of the press. Most newly paralysed people suffer depression a few months after their accident, when reality sets in and for most this passes as it did with Don. For doctors to allow a depressed patient to make this decision in this state is criminal.

It’s a slippery slope backwards into barbarism when disability was seen as costly, shameful and somehow a failure. If more was put into after care things would be a lot different but these days the big money spinner is the almighty cure and people are revved up by this. Not much point at all unless there is decent care now.

Don and I talked about a lot if these and other issues. I urge people to look at “Not Dead Yet which is a national, grassroots disability rights group that opposes legalization of assisted suicide and euthanasia as deadly forms of discrimination against old, ill and disabled people. Not Dead Yet helps organize and articulate opposition to these practices based on secular social justice arguments. Not Dead Yet demands the equal protection of the law for the targets of so called “mercy killing” whose lives are seen as worth-less.

As well Bad Cripple Cripple
Paralyzed since I was 18 years old, I have spent much of the last 30 years thinking about the reasons why the social life of crippled people is so different from those who ambulate on two feet. After reading about the so called Ashley treatment I decided it was time to write a book about my life as a crippled man. My book, Bad Cripple: a protest from an invisible man, will be published by counter punch. I hope my book will completed soon.”

It was after reading from these two places that I felt able to put into words what I had been thinking for some time now and I really appreciate this. I am grateful for the life our family had/ has together. I am blessed by the life I have had and as mentioned I feel privileged to have had the time I had being my husband’s wife. I would do it again infinitely and I know our girls feel likewise.

Therese Mackay

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