Sara awoke from a beautiful dream of running through a green meadow. Running until she was exhausted, falling upon the cool grass, watching the clouds play in the vast blue sky. When her reality sank in, she had a moment of sadness cross her face. But quickly she would put on her best face as she called for her husband, John.
John was usually awake earlier than Sara and had already enjoyed his first cup of coffee by the time she awoke. He said "good morning honey" in his usual chipper voice. "Morning" I replied groggily and unintelligibly. He pulled back the covers, exposing her lifeless body and kissed her on the forehead. "Ready?" he asked as he lifted her to her chair. He was very gentle so as not to pull on her catheter. Making sure the seat pad was positioned, her neck brace was okay, as they headed for breakfast. He poured a can of Ensure into her feeding tube as she sipped through her straw the liquid gold taste of coffee.
John had spent the next three hours dressing, bathing and making her feel pretty. Her computer went where Sara went as she used her eye's to speak, making sure he didn't miss anything. He would sometimes lose his cool or skip a bath when she wanted one but normally it was routine. Sara hated strangers coming in to do it but John needed a break from all of it regularly. He need a life too.
Sitting on the deck Sara would close her eye's, smelling and feeling life all around her, grateful to just be. She often said nature and man will find a way to uncover the mystery as to why the brain cannot get messages to her muscles. What caused that gene to be triggered? Her breathing needs a rest with a bi-pap machine during the day that she jokingly calls her Darth Vader mask. Sara had only been sick for two years but she felt hope in the breeze. Someone will solve the mystery of ALS.
I have ALS but this story is fiction. 15 cases diagnosed a day in US, there is no cure and most live only 2-4yrs.