When Is Enough, Enough?

The Reality of Pain: A PALS Story

Living with ALS is often defined by resilience, but behind that strength lies a battle that many don’t see—one fought against pain, limitations, and a medical system that too often refuses to acknowledge our suffering. As we step into ALS Awareness Month, I want to share my reality, not just for myself, but for every PALS navigating this journey. This story is raw, honest, and unfiltered. It’s about endurance, advocacy, and the weight of decisions no one should have to make. If you’ve ever wondered when enough is enough, you are not alone.

As I lay on my side, enduring the daily ritual of having my bed sores cleaned, I wonder—when is enough, enough? How much pain can a person endure before reaching their breaking point? My body, once resilient, now struggles to heal wounds that should have been minor, and the fight against relentless pain has stretched across the years. It takes my wife and two dedicated caregivers to tend to me, ensuring each wound is carefully cleaned, each painful movement met with gentle hands. Yet no amount of care can erase the reality of what it feels like to be trapped in a body that no longer obeys.

Pain is a constant companion. Being flipped like a pancake might sound harmless, but when your muscles have long since withered, when the simple act of lifting a leg sends shockwaves through your bones, the word “tolerable” loses all meaning. Some doctors—clutching their outdated textbooks—have the audacity to claim that ALS doesn’t cause pain. I beg to differ. Many PALS are lucky enough to escape the agony that haunts others, but for the rest of us, the suffering is undeniable. And to make matters worse, laws built on fear and ignorance stand between us and the medications that could offer relief.

What happens when the pain becomes unbearable? I have always carried an unshakable positive attitude, and I truly believe it has allowed me to live far longer than anyone expected. But even the strongest among us have our limits. When your life shifts from being healthy and carefree to crying out in agony with the slightest touch, you begin to wonder—have I reached mine? The same painkillers that once offered relief have become nothing more than empty promises. My body has adjusted, rendering them useless, and yet increasing the dosage comes at a cost: a choice between enduring pain or spending my remaining days in a medicated haze, lost to sleep. I chose pain. I chose awareness. Because despite it all, I am still here, and I refuse to let ALS steal my spirit.

Pain has a way of dragging you into darkness, whispering thoughts you never imagined would cross your mind. And yet, when I feel the weight pressing down, I remember why I keep fighting. I think about my wife, my friends, my fellow PALS. The love and support I receive are more powerful than any prescription, and every message, every shared moment reminds me that I am not alone.

But this shouldn’t be the reality for any of us.

Doctors must recognize that PALS experience pain. The medical community must do better. We are not just numbers in a system, not just insurance codes and paychecks. We are fathers, mothers, sons, daughters, sisters, and brothers. We are human beings deserving of dignity, respect, and proper care. The battle against ALS is cruel enough without having to fight for the basic right to pain relief.

To my fellow PALS teetering on the edge, ready to give up—hold onto the people who need you as much as you need them. Remember that your life, even in its hardest moments, carries weight and meaning. Our loved ones suffer alongside us, powerless to stop the disease that has taken control of our bodies. They hurt in ways we will never fully understand, and their strength fuels our own.

I never expected that living with ALS would turn me into an advocate, but here I am—year after year, sharing my experience, pushing for change, proving to others that life with this disease is possible. Even the strongest among us break down, but we do not break apart.

So, as we step into May, ALS Awareness Month, I ask everyone reading this to reach out—to reconnect with the people in your life who are struggling. The smallest gesture can remind someone that they are not invisible, that they are not forgotten.

And for me? When is enough, enough? The day I stop fighting is the day I am six feet under. Until then, I will continue to push forward.

𝔗𝔥𝔢 𝔑𝔢𝔰𝔦𝔩𝔦𝔢𝔫𝔱 𝔖𝔠𝔯𝔦𝔟𝔢 aka 𝓙𝓾𝓪𝓷 𝓔𝓼𝓬𝓪𝓵𝓮𝓻𝓪