Mike had an appointment last week with the ALS Team at GF Strong in Vancouver. Instead of seeing the neurologist this time, he saw the occupational therapist, speech therapist, dietition, the ALS nurse, social worker and gadget lady (another occupational therapist specialising in helping ALS patient find ways of maintaining independence). Mike was excited to purchase a knife from the gadget lady. It’s a long, sharp knife you hold like a saw. The first time he used it, he said, “It works really well, and I only cut myself three times.” My sister, Elanna came with us to the appointment. She has come to all three appointments at GF Strong since Mike was diagnosed. She provides emotional support, she asks questions we forget to ask, and she always brings a bag of snacks. We call ourselves the ‘Dream Team’…we are dreaming that we will show up and the doctor will inform us that he has made a terrible mistake and says, “Sorry for the inconvenience, Mr. Sands, but we have made a mistake and you don’t have ALS after all. You are free to go now.” We can dream, right?
It was a three and a half hour appointment this time. The ALS Team asked every question in the book. “How is your swallowing?” “How are you managing in the shower?” “How is your breathing?” “How are you managing going up and down the stairs?” “What is the layout of your house?” “Are you eating softer foods?” “Are you choking, are you sleeping, are you coughing, are you able to dress yourself, can you brush your teeth, can you balance on one leg, can you stand on your head and juggle fire? It was emotionally draining because answering all the questions was a reminder of all the changes in our lives caused by the illness. Even though we were exhausted, Mike and Elanna still had enough energy on the way out to act out a scene from a horror movie with Mike’s new knife.
The changes can sometimes be overwhelming, but the things that stay the same, bring comfort and joy. Mike is still the same on the inside and that will never change. Last night I listened to Mike give Madison a lesson on the Treaty of Versailles with all the knowledge and passion he has for history and although he speaks slower and words are slurred, he still speaks with the eloquence and conviction he always has. This morning, while at the fruit and vegetable market, Mike made the same old jokes about squeezing my ‘melons’ and holding my ‘melons’ and maybe looking for larger ‘melons’ and so forth. This afternoon, when Madison and I came home, Mike opened the door and like a kid, was happy to show off the dirt that covered him from head to toe. He had gone for a 13k bike ride in the rain and was wearing his badge of accomplishment.
Courage is the power to let go of the familiar. – Raymond Lindquist