Little Things Make the Difference

A blog about an ALS patient and her experience from the onset of the disease to her everyday life in an ICU.

Thursday, April 05, 2007

The Patient and the Family

When a grave disease knocks at our door, it isn’t only the patient that is affected. The whole family becomes sick. Here, I believe that it depends a lot on its structure, so that all, even in sickness, seems to be apparently normal.

Each one reacts in their own way, not before considering how much suffering each one can handle. It’s as if each one began a journey, using only the own resources.

From that point on, I believe that the worse thing is abandonment. It is necessary to distance oneself in order to make a more valid analysis, but there are stronger callings which make it impossible at times. Processing within us what the other person (which we so dearly love) may be feeling is perhaps, one form of integration. It isn’t easy to live through someone else because there are always patterns which make us unique and that causes conflict at times.

When my sister’s house started to “crumble” I, trying to help, tried many times to do things my way. That wasn’t possible of course, although I believed that we tried to do what was best for everyone. My sister was always very oriented and due to this, it was also possible to find some essential help for the daily chores. They weren’t perfect yet, they were welcome.

Contrary to what I believed to be best, Josélia and Vítor isolated themselves in a world with very limited access. Since André was very young when his mother became ill, I felt equally worried about him. I wasn’t sure if the contact he had with his mother’s ill body (André was the primary help at home) would be a barrier in his growing up. Today I believe that it wasn’t. I also believe that my sister, due to her illness, had a fantastic experience as a mother: they lived in an authentic manner, they got used to one another, they both knew the steps they had to take so that all would work out well in the end. They were able to play and to laugh in a playful manner about situations which would arise.

I believe, that André was able to accept in a heroic, receptive, spontaneous and instinctive form everything that happened, in a way that only a harmonious person could. Hence, any being, which instinctively knows the truth, can react in an equally truthful and knowledgeful manner when faced with adversity.

Today André is a father, and due to this, I believe that little Afonso will have the best father in the world, because if someone gave up so much of himself to be a good son, he will surely be a great father.


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