Every time I get to a place of acceptance, it seems God allows ALS to take that away as well.
When I lost my job, I had to learn that a job did not define me. I said, Okay, if I cannot work here, then I will redouble my efforts to get to the bottom of my infirmity, heal, then get a better job.
I got my ALS diagnosis. I grieved the loss of my life as I once knew it. I said, If I'm to lose control over my muscles, I will get my affairs in order; I will sell my motorcycle and my car and purchase a wheelchair van. We will build ramps onto the house, widen the doors, add a door to the bedroom, and add a roll-in shower. As long as I can assure my mobility, I can deal.
When I got a whopping dose of frontotemporal disease, as a byproduct of ALS, the combination of wildly fluctuating emotions and increasing caregiving needs, my husband became overwhelmed and tapped-out, abandoning me and forcing me into a nursing facility. My family withdrew. I thought, I cannot do this! Eventually, I accepted my circumstance, thinking, As long as I have this private room overlooking the lake, I can bear my incarceration.
After three months, my husband returned to be a peripheral part of my experience. My family trickled back to visit sporadically. The care was marginal, the food barely edible, and the atmosphere oppressive. My private room became a shared room overlooking the parking lot and I didn't get a window. I was, alternately, depressed and accepting. I continued to deteriorate. I thought, At least I have my husband, my daughter, and a core group of friends to visit.
A respiratory issue nearly claimed my life and took me to the hospital. Despite a stay in the intensive care unit, it was preferable to the home. I thought, My trust has been abused! Please God, find me a decent final home...
Prayer answered. I landed in a first class care facility. Care, food, activities, attitudes, atmosphere, everything improved. I thought, Thank you God, I can deal with the remainder of my life.
I continue to lose abilities, but the degree of love and caring coupled with my own room, make the progression toward the inevitable...tolerable.
When I lost my job, I had to learn that a job did not define me. I said, Okay, if I cannot work here, then I will redouble my efforts to get to the bottom of my infirmity, heal, then get a better job.
I got my ALS diagnosis. I grieved the loss of my life as I once knew it. I said, If I'm to lose control over my muscles, I will get my affairs in order; I will sell my motorcycle and my car and purchase a wheelchair van. We will build ramps onto the house, widen the doors, add a door to the bedroom, and add a roll-in shower. As long as I can assure my mobility, I can deal.
When I got a whopping dose of frontotemporal disease, as a byproduct of ALS, the combination of wildly fluctuating emotions and increasing caregiving needs, my husband became overwhelmed and tapped-out, abandoning me and forcing me into a nursing facility. My family withdrew. I thought, I cannot do this! Eventually, I accepted my circumstance, thinking, As long as I have this private room overlooking the lake, I can bear my incarceration.
After three months, my husband returned to be a peripheral part of my experience. My family trickled back to visit sporadically. The care was marginal, the food barely edible, and the atmosphere oppressive. My private room became a shared room overlooking the parking lot and I didn't get a window. I was, alternately, depressed and accepting. I continued to deteriorate. I thought, At least I have my husband, my daughter, and a core group of friends to visit.
A respiratory issue nearly claimed my life and took me to the hospital. Despite a stay in the intensive care unit, it was preferable to the home. I thought, My trust has been abused! Please God, find me a decent final home...
Prayer answered. I landed in a first class care facility. Care, food, activities, attitudes, atmosphere, everything improved. I thought, Thank you God, I can deal with the remainder of my life.
I continue to lose abilities, but the degree of love and caring coupled with my own room, make the progression toward the inevitable...tolerable.
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