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.

 

In addition to her leg braces, Letitia used a cane when she walked, but the big carts at the grocery store offered enough stability to keep her mobile as she shopped. On this shopping trip, she stocked up on one of her favorite drinks, Monster Energy.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

“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.

 

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. 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.” ⠀

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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. ⠀⠀⠀⠀⠀⠀⠀⠀
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Two days after we began shooting, Letitia passed away.

 

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. 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.⠀

Letitia strapping on her leg brace as we prepared to go to the grocery store. Letitia’s 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 had 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.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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”.

    

 

woman with ALS showing muscle atrophy in shoulder

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.⠀⠀⠀⠀⠀⠀⠀⠀

 

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.