Life and Death with Sister Jane

Jane had been my sister for 54 years. We were Ok with each other by and large. I had some difficulties with her from time to time. A lingering sore involved her job. She was some kind of care worker in a special school (Two Rivers, Tamworth). It bestowed on her a kind of sainthood. You know; “aren’t you wonderful working with disabled people”. This put me in a position whereby I had to believe my sister was not a bad person and would do a good job to the best of her abilities but doubts would linger when i heard how she and others would talk about people at the school, how she would talk over people, how she would poke fun at behaviours, and how she would actively promote herself in a quiet, unassuming way.

I would talk to her about independence, about being included in the community. It was her belief, just as it was her family’s belief that this was not possible. “These people will always need looking after”.

Two weeks before I was called home to watch my sister die she told me how well some disabled people were doing in the community, how they had jobs and how they were getting paid. I didn’t rub it in. I didn’t claim to be right.

During her final weeks she said to me; “I do not want to be like this. I have lost my independence”. What a wonderful epitaph that would be. How great it would look upon a stone. I considered this a gift and took it gratefully.

Later she said; “I know you are here but I need to hear your voice”. This was another gift. She would lie awake on her bed with her eyes closed. She had a great awareness of who was in her room, her voice was reducing and became so no words could be heard but she managed to say this to me. It gave me permission to speak. It allowed me to break out of my non communicative stammerers perspective and to tell her things like i love you and i am proud of you because of who you are and how you have lived and how you changed your mind about independent living.

I was to receive 2 more gifts. Her daughter, my niece, was massaging her feet one day when she was called away. I took over. I didn’t think i was doing that great but i got in to a rhythm, a very circular pattern. She said; “That’s nice”. I felt good about myself for a moment.

During her last 10 minutes I found myself alone with her. I told her she could go now, there was nothing left worth waiting for. My mom came into the room and my sister died. I called the rest of the family in. her body did a couple of those automatic reflex things but she had gone. It had seemed so important to me to be there at the end supporting her, helping her pass away. She could have died when i was out of the room or when i was sleeping. But she let it be when i was with her. I am grateful for this. Death does not have to be too bad an experience. My sister had left us as she had lived: quietly, unassuming, in control of herself and her body, setting an example, doing her best. For me with her work she could not have led a blameless life, there had been little moments of innocent abuse, you know, where you talk over people, where you speak for them, where you innocently invade someone’s dignity. I did not do this when my sister was dying. Other’s did. I preserved her dignity by involving her in her care as much as i could. I was given the chance through this sad event to set my own examples, to practice my values as a disabled activist, and i am accepting it all as my gift.


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