An Afternoon with Letitia - Photojournalist

Woman showing muscle loss in shoulder from ALS

Letitia shows how the muscle mass in her shoulders has atrophied. In ALS, both the upper motor neurons and the lower motor neurons degenerate and stop sending messages to the muscles. Unable to function, the muscles gradually weaken, start to twitch (called fasciculations), and waste away (atrophy). She insisted that I take this photo. She wanted people to see and know what this disease, which she has referred to as a “hurricane”, does to the human body.

Woman with ALS using trilogy breathing machine

Respiratory complications are a large part of ALS as the disease weakens the muscles needed for breathing. The trilogy machine Leticia was using here is noninvasive ventilation to assist with breathing, though she did not use it much. It assists with the muscles in the chest and the diaphragm. The issue she had been experiencing was with muscles in her throat. As the disease progressed, the next course of action would have been invasive ventilation in the form of a tracheostomy in her neck. She was greatly concerned that the invasive ventilation would take away her ability to speak, something she did not want to lose. As someone who thrived in physical activity, she simply said, “That’s not me.”

Letitia’s leg braces were initially used for her arthritis. As her muscles began to atrophy, they ultimately assisted her with her ALS, helping her maintain the strength in her legs to walk and keep her balance.

Though she had a brace for each leg, she often wore only the left one. Her right leg muscles had atrophied so much that is was too difficult for her to get the brace tightened enough so that it would not slide down her leg. At this point, she had started to have difficulty turning the dial on the left brace to get it tight enough but she was still able to do it. She sat on the arm rest of the couch because sitting at anything lower than a 90-degree angle made it difficult for her to get back up.

Her right leg brace was different from the left brace. It had more straps and small slots to weave the straps through, making it more difficult for her to manage as she began to lose muscle movement in her hands. She had recently applied for a Myomo Robotic Arm, for which she qualified. She then had to wait for her insurance, Medicaid, to approve it, a process that can take months. Regardless of the lengthy process, it was something that gave her hope, hope which she had indicated was so hard to find when diagnosed with a “hurricane” of a disease.

Woman with ALS pushing grocery cart with cane

Though she used a cane when she walked, the big carts at the grocery store offered enough stability to keep her mobile as she shops. On this shopping trip, she stocked up on one of her favorite drinks, Monster Energy

Women with ALS walking with can through store

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.