At what point does an illness go from being a challenge in one’s life to becoming one’s life? The progress of the transformation is so gradual, the change so nearly imperceptible, that one barely has time to realize that while a short-term coping strategy is helpful, a long-term plan is critical to the well-being of all involved. Few if any counseling programs that I’ve encountered deal with the long haul. You make it up as you go along.
Disabling degenerative illness was part of my family’s life for many, many years. We coped with little guidance or advice, few respites, and no cause for optimism. Given our family history and background, it would not have been surprising if religion had played a major role. But the most help came from ordinary people in small acts of thoughtfulness and kindness.