This is a speech I presented yesterday to Siemens Energy for ALS Awareness Month. At the invention of Alberto Schirmer, an employee and fellow ALS’er. We met at the inaugural Lou Gehrig Day in Houston. Thank you, Alberto, for the opportunity!

Good morning, and thank you for allowing me to share my life with ALS today.

When I received the request to speak, I wondered to myself, what in the world could I offer you in this field? My background is anything but.

As I reflected on the request to share on living with ALS as a veteran and a Latino, I settled on one frightful term “Terminal.”

Depending on the context, it has many meanings. In the world of ALS, in my world it in fact, means death. This word has a profound effect on lives worldwide. However, today, I will illustrate that Terminal, although it means death, it does not mean Dead. Now, I do want to clarify that these are my personal thoughts, based on the fact that I am living the terminal effect.

These are my observations on the impact a Terminal disease has had on the way I see and live my life.

When you are labeled as Terminal, the initial assault on your psyche is devastating. As you come to terms with the reality of your own mortality, you have a choice to make. This is not a binary process: live or die. No, it is a complex algorithm, one that is affected exponentially by progressive factors.

ALS itself is a neurodegenerative disease, causing the death of motor neurons. The nerves control voluntary muscle movement. It can begin vaguely, a twitch, a limp, or slurred words. In the end, its afflicted are paralyzed, unable to speak, eat, or breathe without assistance. All while the mind remains in tact. ALS can strike anyone and at any age, not just older white males, a common misconception.
• But it most commonly strikes between the ages of 55 and 75
• It’s estimated that between 14,000 and 15,000 Americans have ALS.

• It affects slightly more men than women. Regardless of gender age or socioeconomic status…
The cruelest aspect of ALS is that our body is, in fact, the victim and the perpetrator.
• The first symptoms of the disease often appear in either a hand or a leg and are referred to as “limb-onset ALS.”
• For others, the first symptoms are speech or swallowing difficulties, called “bulbar-onset ALS.”
• The spread of symptoms differ from patient to patient, but eventually, all patients will lose the ability to move and breathe on their own.

However, the mind is the one factor that remains, well…you.

This is my weapon of choice to wage my battle against ALS.

Now, how has being Terminal changed me?

It has made me realize that life is not a constant. It’s a variable in the equation of existence, always changing, always adapting. And, in the face of the terminal effect, it’s our responsibility to adapt, to evolve, and to change our perspectives on life. It’s not about how much time we have left, but about what we do with the time we have. I choose to live ambitiously, not allowing ALS to rob me of my joy.

I have discovered that it’s not just about survival but about thriving. It’s about the spirit of resilience, the will to push on, the courage to face the unknown. Even as an Air Force veteran, I faced numerous challenges, but none quite like this. Especially since, for unknown reasons, veterans are two times more likely to develop ALS than the general population. Yet, the discipline, determination, and sense of duty that the Air Force instilled in me, those are the very attributes that I apply to face ALS. It is an enigma, after all. Here are a few interesting nuggets.

• ALS patients burn calories faster than non-sufferers and, as a result, are often underweight.
• There isn’t one test to diagnose ALS. Diagnosis is done through a variety of observations and scans.

Being Terminal has taught me the value of the present. It’s easy to get lost in the what-ifs of the future, but when you’re living with a terminal disease, you learn to appreciate the now. Every sunrise, every laugh, every small victory… they become infinitely more precious.

I’ve also come to realize that my life is not defined by my disease but by my actions, my experiences, and my relationships. ALS is part of my journey, but it is not the entire journey. It is not the book of my life but merely a chapter.

And, perhaps most importantly, being Terminal has shown me the power of community. The support from my fellow veterans, from my family, and from all in the ALS community has been overwhelming. My ALS family, as I call them, is an army in and of itself. Given that over six thousand individuals are diagnosed annually, and approximately 30 thousand are living with it in the United States. Why wouldn’t there be an army of warriors. There’s a sense of unity, a shared understanding, a collective strength that comes from facing adversity together. It’s a testament to the human spirit and our capacity for empathy and compassion.

• Ninety percent of ALS cases are considered “sporadic,” meaning there is no clear reason for the disease’s development.
This is the category I fall into. As such, I have undergone genetic testing in order to contribute to ongoing research.
• Five to 10 percent of ALS cases are familial and due to mutated genes.
• There is no known cause of ALS, but researchers think that it is a combination of genetics and environmental triggers.
• Researchers are studying exposure to toxic substances, diet, and physical trauma as potential causes of the disease.
• There is no cure or effective therapy for ALS. Patients will undergo palliative therapy to make them as comfortable as possible.
• However, the drug Rilutek can offer patients a few extra months as the drug has been shown to slightly reduce motor neuron damage.
Despite the hardships, despite the uncertainty, I choose to view my situation through a lens of positivity. Because, in the end, that’s all we really have control over – our attitudes, our outlooks, our reactions to the challenges we face.

I stand before you today, not as a victim of ALS, but as a person living in spite of ALS. As an embodiment of resilience. I am a testament to the fact that even in the face of terminality, life can be meaningful, fulfilling, and profoundly impactful.

The terminal factor, in its essence, is a reminder. A reminder that life is fleeting, that each moment is a gift, that we must cherish what we have while we have it. It’s a call to live, truly live, not just exist.

So, to all of you, I say this – live your lives with courage, with purpose, with gratitude. Embrace each day, each moment, each opportunity. Because, in the end, it’s not the years in your life that count. It’s the life in your years.

Thank you.