BBQ's and glass barriers
Entry posted by swilkinson
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BBQ's have been a big feature of our lives lately. We had two today. The first was lunch, I suggested it as a BBQ lunch on Australia Day seemed the real deal. It was very nice, lamb chops with onion, barbecued pineapple and salads. For someone on a low fat diet I've eaten my share of fat lately. No big deal as long as the pain stays away.
Tonight we went to a barbecue with friends from a social club we belong to. I enjoyed it at first but as the evening wore on it became obvious that Ray and I have little in common with these people now. They still have a lot in common with each other but with a couple of exceptions their talk sounded empty, vain and self-absorbed. Maybe that is what all groups sound like to outsiders. Maybe that is what we here sound like sometimes too. At least as self-absorbed.
Now I want to preserve the friendships I have. I know that in the months and years to come as Ray gets more incapacitated our lives will narrow down. There may come a time when we can't go out much, when the threshold of the front door becomes a barrier. I saw this happen to an old friend of ours as his wife had stroke after stroke. He could only go out as someone else came in to sit with her. His respite became the medical procedures he had to have from time to time, when she was booked into a nursing home. But out of love and loyalty as soon as he was strong enough to he would take her back home again.
People like Ray and I who had never until then been worried by illness ourselves became the lifeline to the outside world. Other well-wishers phoned but no longer visited. Towards the end her times in hospital became longer and longer. Some people who had been friends seemed more able to visit there than they had been able to come to their home. Why was that I wonder? Maybe sick people seem to be more in their right place in hospital?
The reason I am thinking about this is that one of our friends slipped into the kitchen to tell me that her cousin had died, at the end he requested that life supports be removed as he wanted to die on his own terms with life. A brave soul indeed. She was sad but said she admired the struggle he had had after many heart attacks and other malfunctions of his body. Some of these malfunctions are a big part of her own medical history so she has some fears that this might be her fate some day too.
I was as much as a loss to comfort her as others have been to empathise with me. It is as if there is a glass barrier between us and others that is hard to break through. That as individuals our expereinces are unique and as such private as well. So even we in this community of stroke survivors and caregivers can only see as though through a mirror, the expereinces of others. Our comfort is as much an attempt to warm ourselves as to warm others.
While this was going on the wine flowed and womens voices became shrill and the mens' laughter sounded more and more hollow. On other nights I would have thought indulgently that it was great they were all having fun. Tonight I didn't feel like that.
There is something very sobering about being involved with strokes, as a survivor and as a caregiver. Maybe being in a life threatened state with other conditions makes you feel the same. And even those lightly affected by strokes and left with little ongoing deficits have still had that brush with death.
These days because I won't drink and drive and I always have to drive I am not much fun at parties. Even though Ray managed to eat the food without choking ( we took our own chicken)and people went up and spoke to him and we weren't excluded I still felt very far away from the other carefree women of my own peer group. I can't talk about our proposed overseas trip, our latest trip to see a "Play in town", our planned big birthday bash. I have very little to boast about. The minutae of the day to day life of a caregiver does not rate very highly on the scale of what others deem important, does it?
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