Sarah: Was it difficult for you to accept help at first?
Morty: I would say yes—but at the same time, I accepted it because the illness was so shocking. I learned early on this was a fight that my family would also fight alongside me.
Sarah: I remember you would quote Fred Rogers.
Morty: Actually, it was Fred Rogers’ mother. She would tell her son during hard times, “Look for the helpers. You will always find people who are helping.” Helpers can be family members, friends, doctors, and aides, as well as others who have the same illness.
Hope
In the face of all life’s challenges, hope is important, but in the face of a life-threatening illness, hope must be multifaceted.3 In addition to hope for a cure, patients may focus their hopes on deepening relationships, maintaining dignity, or living each day to its fullest.
Morty: Early on in this illness, I chose to set a positive tone when I told people. I would say I have the top doctors and there is more research now than ever. Years ago, I wrote a children’s book with the mantra, “I say I can, I make a plan, I get right to it and then I do it.”4 My plan is to be around for at least 30 more years.
Sarah: Do you think it’s possible to hold acceptance and hope at the same time?
Morty: Acceptance and hope are not easy, but possible. I get down about this illness. In my dreams, I walk and talk, and most mornings I wake up and see my wheelchair and I think this is absurd or a different choice word. But I focus on the things I still can do, and that gives me a feeling of hope. I can read the latest research, I can enjoy moments of laughter, and I can spend time with my family and close friends.