Logistics

If people don’t know it by ALS, they know it by another name: Lou Gehrig’s disease.

As a caregiver, I have the misfortune of being on the front lines, watching this disease attack every aspect—physical and emotional—of the man I married. This disease often comes out of nowhere. It strikes people who appear resilient, capable, healthy—people who are still working, running, building, living full lives. And then, quietly at first, it begins to dismantle the body.

ALS is a neurological disease. It attacks the motor neurons—the nerves that control voluntary muscles. As those nerves die, the muscles they control weaken and fail. The body progressively loses the ability to move, to speak, to swallow, to breathe.

People think ALS is a disease of muscle failure.
It is not.
Or at least, that’s not the whole story.

ALS is a logistics disease.

It is without emotion. It is neither cold, nor heartless, nor cruel. It simply is. We attach those words to it because they describe how we feel—our helplessness, our grief—when we are confronted daily with caring for someone we love who has fallen victim to it.

The neurological damage is real and devastating. Regardless of the order of progression, function is lost: hands, arms, neck, legs, feet, lungs. The ability to move, to breathe, to eat, to speak. Decisions appear about machines that sustain life. And through most of this, the mind remains intact—unless frontotemporal dementia (FTD) enters the picture, sometimes misdiagnosed as Alzheimer’s.

But what consumes daily life is not only the damage itself.

It is everything that must be coordinated around that damage as its relentless progression engulfs you: care, equipment, people, timing, coverage, transportation, contingency planning. As the body changes, the systems around it must change too—constantly. Nothing stabilizes.

What you think will happen soon may happen later. What you don’t anticipate will happen tomorrow. ALS erodes any sense of groundedness. It is like being afloat at sea in a storm, with little to hold onto other than the mast or boom—hanging on, knowing that you cannot scream because there is no one to hear you in the void.

Every basic human function becomes an operation. Eating. Breathing. Sleeping. Moving from one room to another. Going to the bathroom. Showering. Functions we take for granted. Each requires planning, setup, backup plans, and someone to manage it all. ALS doesn’t just weaken muscles—it dismantles routines. Once it progresses beyond the earliest stages, there is no routine at all.

People often say caregivers have “a lot of support.” What they mean is that there are many names, numbers, and agencies you could reach out to—if you know who they are and how they fit together. What they don’t see is that none of those pieces talk to each other.

I was one of the fortunate ones.

I happened to know someone who personally knew someone who had recently been affected by ALS—and they connected me. That single connection led me to CCALS (Compassionate Care ALS), an organization built by people who have lived this disease firsthand: as family members, as caregivers, as witnesses to what ALS actually demands.

It was there that I met E.

She changed my life forever—and most certainly the quality of life for my husband. She told me I was in crisis. I didn’t believe her. I am never in crisis. I am always in control.

But she saw what I couldn’t.

Quietly, without drama, she anticipated needs before I knew they existed. Equipment arrived before I realized we would need it. Support was in place before the situation tipped. She understood the terrain so well that she stayed ahead of the disease, even as it shifted beneath us.

And in doing so, she created something that felt almost miraculous: a sense of calm, even while standing in the storm. Not because the storm had passed, but because for the first time, I was no longer facing it alone or unprepared.

That is what real support looks like. Not a list of resources, but someone who understands the system well enough to integrate it—before failure cascades.

Because failure is constant.

Equipment breaks or no longer fits. Care coverage falls through. Insurance approvals expire. Appointments shift. What worked last month no longer works this month because the body has changed again. Just as one problem is solved, the problem changes shape. And when you need something, you need it now—not tomorrow, or next week, or a month from now. You need it today, at this moment.

This is why ALS is exhausting in ways that are hard to explain. The work is not only physical or emotional—it is operational. It requires constant attention, decision-making, and adaptation, often under conditions of extreme fatigue. There is no “set it and forget it” phase. There is no steady state. And all of this while trying to live your “other life,” as a parent, a spouse, or working your “9 to 5” to pay the bills.

We talk about ALS in terms of loss of function. We talk far less about the systems that fail alongside the body—and the person who performs the work to absorb that failure to keep life functioning at all.

That work has a name.
It’s called logistics.

And until we name it, we will continue to misunderstand what ALS actually demands.

I am not an executor. I am a strategist and a planner. I live in contingencies—plans A, B, and C. This has been my professional life for more than three decades, and how I have tried to build my life. I define visions, anticipate failure points, and create paths forward. I surround myself with people who can take a plan, strengthen it, fill in the gaps, and execute it seamlessly. I am humbled and in awe of those who can do this without seeming to sweat.

ALS does not care about strategy.
It demands execution—at scale—every single day.

And every once in a while, something—or someone—reaches out from the darkness to offer a rudder. Something to hold onto. Something that steadies you while you navigate the storm. I have been fortunate to have people who have walked this road before me fall into my path. I can name them all—those who make a material difference, and those whose presence provides the emotional and spiritual sustenance I need to continue.

I am broken—but pieced together by the arms of those who hold me up every day.