MDA Ambassador Guest Blog: ALS is Not the End of My Story

Monica Torres is a 42-year-old mom of 6. Monica was born and raised in Puerto Rico and recently moved to the city of New York. She has a service dog name Cloe.

Before getting diagnosed in old San Juan just enjoying my day out with help of my family

Being diagnosed with ALS is a moment that will forever stay with me. It felt as though time paused, and in that silence, I was forced to face a reality I never expected. Questions filled my mind. I was only 39 years old. What would my future look like? How would my life change? How would I keep moving forward? Along with the fear came sadness, uncertainty, and a deep sense of loss for the life I once imagined.

But within that moment of shock, something else remained strong inside me: my purpose.

Strength through passion and purpose

I have always believed in education, in justice, and in standing up for what is right. As a graduate student in the field of criminal justice, I have dedicated myself to understanding systems, inequality, and the importance of protecting the rights and dignity of others. Living with ALS has transformed those beliefs into something deeply personal. What I once studied in books, I now live in my daily life.

With one of my daughters (Kamilah)

ALS affects my body, but it does not take away who I am. It does not take away my mind, my voice, or my passion for justice. If anything, it has made those parts of me stronger. I now see the world through a different lens, one that understands what it means to live with a disability in a society that is still learning how to be fully inclusive.

Some days are harder than others. There are moments of frustration, moments of exhaustion, and moments when I grieve the physical abilities I once had. It is not easy to accept change, especially when it touches every part of your daily routine. Yet in those difficult moments, I remind myself that strength is not measured by physical ability. Strength is waking up every day and choosing to keep going. Strength is continuing to learn, to grow, and to hold on to purpose even when life feels uncertain.

A journey of growth

Me and my husband Luis

Being a graduate student while living with ALS is both a challenge and a source of pride. Every assignment I complete, every class discussion I take part in, and every step I take toward my academic goals feels like a victory. Criminal justice is more than a field of study to me. It represents fairness, accountability, and the belief that every person deserves dignity and equal treatment under the law. As someone living with a disability, those values mean even more to me now.

I have always cared deeply about social justice and equal rights. Today, I feel that commitment more strongly than ever. Living with ALS has shown me firsthand how important accessibility, understanding, and compassion truly are. It has also shown me that people with disabilities deserve to be seen, heard, and respected – not pitied, not overlooked, but included.

This journey has changed me emotionally. It has made me more reflective, more aware, and more grateful for the people who stand beside me. My family, my support system, and those who encourage me remind me that I am not alone. Their love gives me strength on the days when I feel tired, and their belief in me helps me continue forward.

Me and my best friend Cloe (she is 7 years)

There are moments when fear tries to take over. Moments when I think about the unknown and what the future may hold. But then I remind myself of something important: I am still here. I am still learning. I am still fighting. And I am still using my voice.

Living with ALS has not taken away my dreams. It has reshaped them. It has deepened my understanding of resilience and strengthened my desire to advocate for fairness and equality. I want to be part of a world where disability does not limit opportunity, where accessibility is not an afterthought, and where every person is treated with dignity.

Taking on tomorrow

My family helping so I can pose for pics

Sharing my story is emotional, but it is also empowering. If my journey helps someone feel less alone, more understood, or more hopeful, then it has purpose. I want others living with ALS or any disability to know that their lives still have meaning, value, and strength. We are more than a diagnosis. We are people with goals, intelligence, and voices that deserve to be heard. Since I was diagnosed, I have been unstoppable. Why? Because quitting is not an option for me. I have found a new meaning in life.

I continue to move forward one day at a time as a student, as a person who believes in justice, and as someone learning to live with ALS. I may not know exactly what tomorrow will bring, but I do know that I will face it with courage, with heart, and with the determination to keep going.

ALS is part of my life, but it is not the end of my story. My story is still being written, and it is filled with resilience, purpose, and the quiet strength to keep fighting for what matters.