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Writer's picturemelindafox

Living with ALS: Alyssa’s Powerful Words on Family and Grace

Words don't always need polishing to shine. As a chronic over-thinker who's trying to change, this is a challenge for me. But today, I held back and tried to keep my own words to a minimum

Below is an unfiltered glimpse into my first conversation with Alyssa Anthony. Her focus on family, forgiveness, and grace radiates through her words in a way I could never properly articulate.

I hope this imperfect (because of me) snippet allows you to see Alyssa as I do- a woman whose beauty lies not just in her strength but in her quiet determination to live and love well.


• • •

"We used to be so private," Alyssa told me as we jumped into our conversation. "Like very, very private. Now I share everything. It's such a switch."

Loving family of four looking at their mother during their in home photoshoot in Upstate New York.

"And it doesn't make you uncomfortable, talking about having ALS and all the things that go with it?" I asked, trying to measure my words.

We both knew what I was alluding to. ALS is progressive muscle weakness that eventually takes away the person's ability to walk, speak, and breathe. ALS attacks every muscle in the body, usually working from the feet up. It's a quick disease with no cure and minimally effective treatments. Life expectancy is typically within 3-5 years of diagnosis. Alyssa was officially diagnosed in September 2024 but problems started in June of 2023.


Alyssa's time here is limited.

Mother who battles ALS fixes her son's suit for their photoshoot with local Pennsylvania photographer.

"Honestly, I want to share. I have all these thoughts but the words just don't come out," Alyssa said, pauses and quivers in her voice. "When we got the news we grieved really, really hard. Then we looked at what we needed to do. My daughter, Loralye said, 'I know there will be grief after this, but I want to be in this moment and focus on what I can do.' She also says we just have to laugh. There is a lot of dark humor in our house."

Husband and wife close together in sweet moment as wife battles ALS in upstate New York.

"Oh, that is my favorite kind," I said, already knowing we would get along so well. "How has it been with your kids? Sounds like they are pretty amazing."


"So amazing. They are my favorite caregivers," Alyssa said, and I could hear the smile in her voice. "Their strength and their compassion. Never once have they complained. I was a stay-at-home mom their whole life, and I even home-schooled for a while. I have always been their caretaker and took care of everything."

Alyssa paused, and I could imagine her looking across her home, remembering her young Nehemiah and Loralye as they ran around the living room.

"It went so fast," Alyssa continued. "I was taking care of every need, and it was an instinct. Then I lost it so fast. And they just picked it up and switched it around. They are the best caretakers."

Alyssa, mother of two, sits with her two smiling children for a family picture.

"I can tell you love them a lot," I said. "I can hear it in your voice when you talk about them."

"Oh I do," Alyssa said, "My husband, Luke, says they are my legacy. Our children are our greatest legacy. The bond I have with my husband and children is hard to explain. It's incredible."

Lucas, father of two, smiles with his son and daughter in their Waverly New York home.

"That's beautiful," I said, my pencil moving quickly, trying to write all the words my new friend was sharing. "All of this was an unexpected turn in your life. What's been most surprising?"


Alyssa laughed, "Honestly, people's reactions and their lack of understanding and compassion. Their responses aren't even what I expect. People compare this to MS, which it isn't like. People's responses have been the hardest thing. Someone asked me about a cure and meds. The man said, 'Well, everyone is dying; you're not special.'"


I stood up from my spot on the floor, my face feeling hot as the fighter in me raged.

"Oh my word," I said, chewing back the phrases I wanted to say. "That's horrible and not ok."

"I just don't think people know," Alyssa said, her voice showing no signs of the frustration she would have been entitled to share. "People also say, 'Why don't you fight more, fight for your kids more.' If I could fight for my kids, I would. But I fight battles I can win. My neurologist told me that my fight is to get up and see my kids off before they go to school or to get out of bed to go to my daughter's soccer game. My battles don't look like someone's battle with cancer or Parkinsons. My battles look different."

Alyssa, smiling with joy and love despite her ALS diagnosis.

"How do you handle all that?" I asked. "It sounds like this is all so much to take in."


"I realize now I spent too much time focusing on the stupid things, worrying about what people thought. It was such a waste." Alyssa's voice was stronger now, less pauses and hesitations. "Why did I even care? Why did I even worry? Why didn't I just enjoy?"

Black and white photo of Alyssa holding her daughter Loralye in a gentle hold.

We didn't say anything for several moments.

I was asking myself all the same questions Alyssa had just asked . . .

Emotional image of Alyssa looking over Loralye and she rests against her mother.

Alyssa filled the silence first, "Luke has asked me what I want people to see in me through this process. At first, I didn't really know. But it's come to me- Graceful. I want to be so grateful. I do have grumpy days but I just want to be graceful with everyone. I try to be kind and respond with a smile. I am trying so hard and some of it is coming easy."

• • •



Every interaction with Alyssa is easy because she is always kind, always hopeful, always smiling. And she doesn't have to be. She has every excuse to be bitter, resentful, and just as cantankerous as the hard-hearted people who've shared their unnecessary opinions and insight.

It is easy to be angry.

It is much harder to be kind.

Alyssa and her son Nehemiah happily together for family pictures.

Alyssa, despite her body losing physical strength daily, is developing powers that not only change her life but the lives of her children and husband: Compassion for misunderstanding.

Forgiveness for hurt.

Love despite unfairness.

Gratitude for rage.

Grace for the struggles, the pain, and the unknowns ahead.


These powers, intangible and immeasurable, are Alyssa's greatest strength. And with them, her life will be as beautiful as she is.


Alyssa’s journey is far from over, and neither is the impact she’s leaving on everyone lucky enough to know her. And just so it's clear, I count myself lucky, blessed, and uplifted to know Alyssa and the rest of the Anthony clan.


Alyssa with her best friend, Jessica


As Alyssa says, “I just want to be graceful, to respond with kindness.” She is, without a doubt, succeeding.



Thank you for all you have taught me, my friend.



Hair and makeup and behind-the-scenes work thanks to the incredibly talented and kind Shea Hollister.


Love,

Melinda




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