I met Letitia in late March of 2019. Leticia had been diagnosed with Amyotrophic Lateral Sclerosis (ALS) but, being on Medicaid, she did not have access to adequate healthcare. Even with healthcare, the costs for a person living with ALS easily add up to over $200,000 in a single year. She spoke of big pharma and stem cell research but the words she kept repeating were, “I just want people to know.” Struck by these words, I gave her my contact information and offered to help her tell her story through imagery. A few days later she called and we met for coffee.
I discovered that her story wrought with complications. Like many, her ALS went undiagnosed for months, possibly years. There is no test to diagnose ALS. Rather, it is a process of elimination. In the midst of her diagnosis, she lost her home in a complicated court battle over an increase in lot rent. She was fortunate to have friends that offered her a room, but were unable or unwilling to do much more for her. Though the ALS Association had advised her to enter a group home, she refused to do so citing extreme concern for the fate of her two 16-year-old cats, a core source of comfort to her. She did not have children and was never married. The family she did have was estranged or she simply did not have contact with. Letitia was fiercely independent and fought to maintain her independence to the end.
I met with Letitia on sunny afternoon in early April to start documenting her experience. She found purpose in sharing her story and I found purpose in giving her a medium to do so, a voice she otherwise felt she did not have. Two days later, at 56, Letitia passed away.
Letitia changed the course of my work. She reminded me of my reasons for picking up a camera. She showed her courage and vulnerability unabashedly. While we were never able to complete our project, I’d be doing her a disservice if I did not share what we had. In a very large part, I owe my pursuit of creating meaningful work to her.