NARRAGANSETT - Rebecca Lloyd has a Christmas wish. It might be her last.

 She speaks her words with a halting fragility, her voice trembling under the weight of their truth. Tears streak her cheeks, the rawness of her emotions breaking through as sobs interrupt her sentences.

 Rebecca is living with amyotrophic lateral sclerosis (ALS), an unrelenting disease that mercilessly steals the body’s ability to move while imprisoning the mind within its crumbling shell. The fatality rate for ALS is effectively 100% because, as of now, there is no known cure or treatment to halt its progression.

 This Christmas, she holds onto a heartfelt wish for a gift that might allow her to maintain some connection to the world as her illness inevitably separates her from it. Control of her body is disappearing in a very frightening way.

 First, of course, there’s a story about why this gift matters so much.

 “The holidays are getting harder because I’m slipping into a body that doesn’t work,” she said in a difficult interview this week, her words slow and deliberate, each one a testament to the growing difficulty of speech we all take for granted. 

 She sits every day in a wheelchair that has now replaced walking, a freedom she no longer enjoys.

 “The time is coming soon I will need a tracheotomy and doctors will put me on a ventilator. At that point, I will lose all ability for purposeful movement. My body will stop functioning, and my brain will continue to work until the end stage,” she said, her tone detached, as though pretending the terrifying inevitability of it all is academic.

 It is not for her, as she goes on explaining.

 “Your body just a vessel,” said Rebecca, recounting the moment she received her diagnosis in October after months of tests to uncover the reason behind her weakening strength.

 “For me, it’s hard for me to talk (about it) because the end is a reality. I feel myself falling into my own body. I used to push through, but I can’t do that anymore,” she said, the pain in her voice palpable.

  As the daughter of Robert Lloyd, a firefighter in Narragansett and chief in Tiverton, her strength and resolve have always been a defining part of who she is. But now, even that is being stripped away.

 Rebecca and her family have called Narragansett home for over 80 years. She lives in their beach house on Rodman Street, a place full of memories. But now, even the thought of those memories brings tears. 

 Her two children, now 23 and 21, have been her anchor, but she grieves the moments she knows she’ll miss.

 “I have imagined they would come back to their beach house in the summers and there would be pitter-patter of little feet and I’ll never know that,” she said, her voice breaking.

 “I won’t see my sons, I won’t see my grandbabies, I won’t see my kids get married, and come back to this beach house,” she said, crying as the weight of those losses presses heavily on her heart. 

 The pain isn’t just in what will happen, it’s also in the vivid imagining of what never will.

 This is the cruelty of ALS—an unrelenting torture of the mind, as expectation and imagination turn joy into sorrow. The connections that the holiday season celebrates feel more distant, as though her body is forcing her brain to grieve its eventual disconnection.

 “We all have hopes and dreams, but we aren’t guaranteed them,” she said, summoning her composure. “For someone like me who has the gift of gab, it’s hard to have it going away.”

 The reality is stark: soon, Rebecca will lose the ability to speak and to move the facial muscles that have shared her smiles and laughter. It is a cruel theft, silencing the voice that has been a constant companion to her loved ones. It’s like turning the key of a car, hoping for a sign of life, and hearing only silence.

 “The 'board' for as long as possible will allow me to be on the ventilator and still be part of the world,” she said, her hope clinging to this piece of technology she cannot afford though it will be a true lifeline to the outer world.

 The “board” she speaks of is an augmentative and alternative communication device—a computerized system that would allow her to communicate when her body no longer can. 

 Through tax-deductible donations to Peace Dale Congregational Church, Rebecca is hoping the church can purchase the device, which costs between $10,000 and $15,000.

 PDCC church members have been her unwavering support, providing her with both hope and help. They are rallying to ensure she can obtain “the board” that can be an extension of her in many ways. Anyone interested in making a tax-deductible donation through the church can write to Office@peacedalechurch.org or call (401) 789-7313.

 These devices, which include speech-generating systems, eye-tracking technology, and text-to-speech tools, offer a temporary reprieve—a way to maintain her voice and presence, even as her body slowly, without hope for reversal, becomes paralyzed.

 Rebecca knows, though, that this is not a solution, but only a temporary forbearance. 

 The day will come soon, she and others believe, when feeding tubes and ventilators together keep her alive in a near vegetative state in some hospital bed within the confined prison of a nursing home she will never leave alive. 

 A difficult choice then awaits her, she said. It will be about disconnecting or both.

 “It will be mine to make. I will need to make it, I know that, but I won’t be able to do it without the 'board' and I want to be the one making it,” she said.