May is ALS Awareness Month so what better time to share this project than now.
Meeting Letitia – The Inspiration
I met Letitia in late March of 2019. She walked into the office where I was working complaining about having difficulty opening the door. I noticed she had braces on her legs, walked with a cane, and seemed to have limited mobility in her right hand. She was small and seemed a bit frail. After taking care of her business, I helped her out the door and we started chatting.
“I Just Want People To Know”
Letitia spoke about her diagnosis, ALS, brought up stem cell research, and big pharma, but the words she spoke which struck me most were, “I just want people to know.” She repeated this phrase multiple times. I went back into the office and paced with those words ringing in my head.
Finally, I chased her down in the parking lot and gave her my information. She had a story she clearly wanted to tell and I felt overwhelmingly compelled to help her tell it. A few days later, she called. We met for coffee later that week and the following week we started our project. ⠀⠀⠀⠀⠀⠀⠀⠀
Two days after we began shooting, Letitia passed away.
This was a bit of a shock for me as I thought I would have far more time with her than I did. Letitia was still walking and still maintained quite a bit of independence. Though at times barely audible, she could speak. She did not have a trach or a feeding tube. It challenged my all my preconceived notions on what ALS looked like.
The time I did have with her touched me deeply. Her story was wrought with complications and she, being fiercely independent, was facing this devastating disease, essentially, alone. She was incredibly brave, not only because she was facing this disease, as she had no choice in that. She was brave because she was willing to share her story. This gave her a bigger purpose. Allowing me to document her story gave me a bigger purpose. And I will be forever grateful to her for that. ⠀
ALS Awareness Month⠀⠀⠀⠀⠀⠀⠀⠀
Working with Letitia has lead me to connections with the ALS Association Evergreen Chapter, with whom I will be continuing this project in honor of Letitia and everyone else who has been affected by this, as Letitia called it, “hurricane” of a disease.
Letitia allowed herself to be vulnerable. Being vulnerable takes a great deal of courage. When we allow ourselves to be vulnerable, we allow others to be vulnerable. Vulnerability leads to genuine connection with others; it humanizes us. Her willingness to be vulnerable reminded me of why I pursued photography in the first place – “to do something good with that camera”.
May we all find inspiration in those willing to share their stories as openly as Letitia was as that is where true inspiration comes from.