"Life doesn't come with an instruction booklet" stated a very wise woman on one of the online ALS support groups I belong to. She is a CALS and works very hard every day to care for her husband who lives with this awful disease. This woman writes eloquently and I always have a take away from what she writes.
There is no right way or wrong way to care for someone with ALS or live with ALS or even love someone with ALS. We all just mosey along in the best way we know how, and try to share with each other different solutions to the different problems that pop up - a different one almost every day. The most interesting solution was something I came across a few weeks ago as I was trying to figure out how to sleep with my gnarled pointer finger in a straightened position. A PALS suggested that one should sleep with an empty movie candy box on your hand. It forces your fingers to lay straight AND you get to eat the candy first! Genius! If I were ever to write a "How to do LIFE" instruction book that would definitely make the cut.
I recently had the opportunity to drive through Perrineville, New Jersey. Perrineville neighbors Roosevelt, where I grew up. I spent a considerable amount of time there as my friend Lisa's grandparents (both sets) lived there. Predominantly rural, open space and farm land when I was a child, it is now a bit more suburban. As my parents and I drove down a familiar road, I commented that this road remained unchanged. My father responded that "no, the abandoned house finally fell". I looked to my right and there lay the remains of what was once an old, wooden home. It took my breath away as I remember driving by this empty, broken down structure almost every weekend, each time wishing I could go inside and explore.
I felt that way about every deserted and discarded home or store or structure that I would see. I envisioned walking in and finding treasures under years of dust. Old dolls, and broken tea cups. Rusted tools and expired cans of food in cabinets with doors hanging from just one hinge. I am not sure why I thought the previous occupants of such homes would leave their belongings there. Maybe they had to escape the mafia or they were run out of town by the sheriff! Whatever the reason I would romanticize the items left in these forgotten homes.
I remember one time Lisa and I venturing into the broken down chicken coops on Grandma Jackie's farm. We didn't get very far before Lisa's Uncle Lonnie found us and threatened to tell. I remember the excitement I felt when I discovered that the abandoned tiny house sitting on the edge of a property in Etra (on the way to Hightstown) was part of Andy's family property. I met Andy in high school, but I had spent most of my elementary school years wondering about the contents of that tiny house, which in my young mind was occupied by tiny people or fairies who only came out at night. They ate on doll size plates and wore the leftover Barbie clothes thrown away by the people living in the big farmhouse behind it. I thought now that I knew Andy I would finally be able to look inside the small vacated home. I never got the nerve to ask.
Chapter two of my imaginary "How to do LIFE" book would be Don't be afraid to explore. Chapter three - Have the nerve to ask.
Now that I live in this uncooperative body and a power wheelchair, I recognize that I will never see what is inside these abandoned structures. The dolls and tea cups will remain under the decades of dust, as well as piles of termite infested wood now that the home has fallen. The secrets of the tiny nocturnal people in the plastic Barbie heels will remain undiscovered. They will continue to live in my childhood, in my mind, and in my imagination.