Democracy falls while my mother is dying

I can barely keep up with the news. I’ve read about DOGE, and the Department of Education cuts, and the Harvard hiring freeze. I work in higher education, and I keep waiting for my university to respond. In a Zoom call earlier this week, I learned that UVA is nixing their DEIA office. I read the New York Times article of the words that are being scrubbed by the Trump administration.

About two weeks ago, my mom was back in the hospital, and she met with a palliative care nurse who told her that she needed to consider what she wanted for the rest of her life because she has approximately six months left to live.

It’s not surprising. I knew it was coming. She’s had metastatic cancer for just over a decade, and her hospitalizations have become more frequent. Her medical conditions have become more complicated. She’s tired. She can no longer walk. She sleeps a lot.

And I knew that the country would look like this under Trump. I knew that women and Black folks and Brown folks and queer folks and trans folks and disabled folks would all be attacked. The man in office mocked a disabled reporter. He has multiple allegations of sexual assault. He picked a Nazi as his right hand man.

But it’s still shocking.

It’s shocking that my mother is dying. It’s shocking that democracy is falling and schools like UVA, universities we TRUSTED, are turning into slumlords, operating at any cost, squeezing every last penny from their students without protecting them.

The worship of money is America’s true religion.

I fought to raise awareness and funding for pancreatic cancer research for over ten years. My mother has neuroendocrine pancreatic cancer. And that funding is about to be cut. (I started writing this essay in mid-March. That funding has now been cut.)

And my mother is dying.

I’ve written feminist essays and articles for my entire career, and now the word “women” (and all associated words) is literally being removed from the government and public education lexicons.

And my mother is dying.

I work at a Predominantly Black Institution, and I have no idea what’s going on, how are students are affected, or what is happening to our faculty and our research. The emails we get are vague and limited.

And my mother is dying.

The dismantling of American democracy is a tragedy so large, so all-encompassing, that each day is a punch that leaves me breathless. And yet, within this landscape of fear and uncertainty and horror, smaller tragedies continue. Like mine. Like knowing that I have six months left with my mom. Maybe more.

Maybe less.

And it’s hard to focus because everything everywhere is demanding my attention and the amount of sadness that I have is overwhelming. I’m angry that this incomparable shitshow of an administration is destroying my attention. I want to focus on my mother. I want to help my mother. I want to put all of my attention into caring for her and being with her and making sure that she can do all the things that she wants to do in the time she has left.

But I’m worried about whether budget cuts to higher education will cut my job. I’m worried about what further rights I’m going to lose as a woman. What rights my friends will lose. What rights my mother will lose. What access to healthcare she’ll lose when she needs it most. I’m worried about my plummeting retirement fund. I’m worried about her plummeting retirement fund. I’m worried about deportations and the fucking DOGE team accessing my records and measles outbreaks and I’m so fucking enraged at this godamn fascist and Nazi bigotry that I want someone to come at me just so I can punch them in the fucking face.

My mother is dying.

Every day is another day gone. I have no idea how many days we have left. But I know that it’s nowhere near as many as I want.

I know it is impossible to be a decent human being and ignore what is happening in America.

I know that within the larger tragedy of losing America that these smaller, personal tragedies are still happening. Heartbreak. Loss. Grief. Endings. And it’s hard to mourn on top of mourning. It’s hard to be afraid when we’re already living in fear.

But it’s important to make room for this heartbreak. For this sadness. For this impending grief.

Because we are the things that matter. Our small, human lives. Our small, personal tragedies. Our small, personal joys.

The entire point of government is to serve us. Human beings. With our small, individual lives, and our small communities of friends and family, and our small roadmaps of work and life.

We should never live in a world where grief feels like a distraction. Because being able to form the connections and lives that allow us to grieve when they end, that is the point of living well. And governments should help us live well.

And they should help us die well.

Instead of having to spend our last months in a fight for healthcare, and medical billing, and coverage, and spending over $9000 a month for higher care levels in “assisted” living.

My mom is no longer ambulatory. She can’t do basic things for herself. And I don’t live in her state. So she’s punished by a system that she served, as a hospital employee, for over 40 years, and forced to pay extraordinary sums for care. Because money matters more than people.

And still, my mother is dying.

And it’s hard for anything else to matter.