By: Safurah Bharwani
On April 16th, 2015, the Center for Human Health’s film series, Health Screenings, the Disability Studies Initiative and the Center for Ethics screened the documentary, When I Walk. This film focused on the story of filmmaker Jason DaSilva and his journey with multiple sclerosis. Jason was 25 years old, a rising independent filmmaker exploring the world and its magnificence through the lens of his camera, when his life suddenly changed. He had been diagnosed with primary progressive multiple sclerosis. Primary progressive multiple sclerosis, or PPMS, is a disease of the central nervous system, commonly characterized by the progressive slowing and worsening of neurologic functions, such as numbness, weakness, difficulty walking, etc.  Jason’s chronicle of his mental state at the time of his diagnosis mimics that of hope in the face of fear and a strong willpower to learn to live in harmony with his MS. He experienced an unfortunate fall on a family vacation at the beach at the early stages of his PPMS, after which he gradually but progressively worsened in terms of physical stability. He mentioned to his mother, during the time after his diagnosis, that he always thought about being sick. His condition had taken over his mind, over his entire life.
Since his childhood, Jason found solace in artistic expression, whether it was through music and performance, sketching and painting, or through photography and film making. He decided to make a documentary based on the candid chronicle of his journey through life since his diagnosis, not only for personal therapeutic purposes, but also to share and enlighten the world around him to be educated about his personal experiences with MS.
The documentary made me feel as if I was walking with Jason throughout different stages of his life and disease. We saw his diagnosis and the progression of his MS, to arrive at the point where he established a relationship with the delightful Alice Cook. Jason and Alice met at an MS support group, which Jason attended after his mother’s recommendation. MS personally affected them both, though in different ways. Alice’s mother has MS. Thus, the showed different experiences with the condition and the way in which it affects everything in a diagnosed person and caregiver’s life. Their relationship grew as Jason’s condition progressed aggressively. Alice became his primary caretaker, assisting him in all aspects of his life: dressing, bathing, eating, and getting around the city. They built a beautiful life together, celebrating their love and happiness in matrimony, surrounded by family and friends.
Through their new lives together, Jason and Alice became a team. They both understood the reality of the disease, and fought together to overcome any difficulties and barriers they faced. They searched for ways to find more disability accessible taxi services, restaurants, and businesses. But through the day-to-day life, Alice felt tightly bound to Jason because of his PPMS. She found herself sacrificing her own priorities and passions for the sake of taking care of him because she didn’t want to leave him alone – or rather, because she felt that she couldn’t, or shouldn’t, leave him alone. The couple wanted to have a family, but given Jason’s condition, they were unsure if they would be able. After medical consultation, they were thrilled to know that Jason was still viable and that he could be the father to her. Alice got pregnant, but unfortunately had a miscarriage. This was particularly hard for Jason as his mobility impairments and lack of accessibility of the city’s transportation system prevented him from going to the hospital with Alice. He felt stranded and partially to blame, but there was nothing he could do. The couple recovered from this loss, and celebrated the new pregnancy, thus ending the movie on a positive cliffhanger.
Jason DaSilva’s story truly was unique; it was uplifting, inspiring, and the chronicle of a brave soul, whose vulnerability and pursuit of happiness continue to fuel his willpower to fight multiple sclerosis.
1: Primary-progressive MS (PPMS). (n.d.). Retrieved April 23, 2015, from http://www.nationalmssociety.org/What-is-MS/Types-of-MS/Primary-progressive-MS
2: Braswell, H. (2011). Can there be a Disability Studies Theory of" End-of-Life Autonomy?". Disability Studies Quarterly, 31(4).
3: Frank, A. W. (1994). Reclaiming an orphan genre: the first-person narrative of illness. Literature and Medicine, 13(1), 1-21.