Caregiving Is the Story We Live Inside

There are stories we choose to tell about ourselves — the professional milestones, the hometown details, the clean through-lines that make a life sound intentional. And then there are the stories we live inside. The ones that shape our days quietly, restructure our priorities, and reveal how fragile our systems really are. For me, caregiving is not just a policy arena or a professional calling. It is personal.

What follows is an excert from the first essay I published on Substack, Caregiving is the Story We Live Inside. It relates the story of a heart attack, a diagnosis I struggled to name, and the long road through a care system that both saved me and failed me.

It’s also a story about the caregiving divide in America — the widening gap between those who can assemble support when crisis hits and those left to navigate it alone. Here is an excerpt.

“Across the country, people in need forgo care because it is too expensive, or because they can’t find a qualified worker or available family member to help. Hundreds of thousands of people sit on Medicaid waitlists — an underestimated figure at best — waiting desperately for months or years to access services. Others are prematurely institutionalized and forced to live in nursing homes. And too many people suffer and then die unnecessarily, all while Congress debates whether Medicaid is a fraudulent scheme that allows people to stay unemployed.

This is the caregiving queue we’re all standing in. A stroke changes how we speak and move. A fall becomes a hip fracture, which becomes a wheelchair. A child with developmental disabilities ages out of school-based supports. One morning, you realize you can no longer manage your medications, or shower, or eat on your own. And then what?

What we’re facing as a country is a caregiving divide—the chasm between the wealthy, who can afford to scrounge together solutions that make long-term care more bearable, and the vast majority of us, who must drain our incomes, bodies, minds, and careers to stay afloat when disability or illness arrives and becomes harder to manage.

Until these crises manifest, many of us place them on a shelf in the other room. In doing so, we convince ourselves that this is about some other unfortunate person brought down by circumstance. However, it will be most of us, today or tomorrow.”

Read the full article here in English or Spanish and subscribe to Care, Actually.