THE BLOG

The Small Things Are Killing Us

02/15/2015 01:49 pm ET | Updated Apr 17, 2015

Today, I watched my father walk down the slippery porch steps in front of my mother and brush the cold snow from the railing with his bare hand so she could hold on as she followed him.

We do these kinds of small things for the people we love.

It makes me angry.

My young mother has Multiple System Atrophy (MSA), a rare neurodegenerative disease that causes progressive disability then death. There is no cure.

So we do small things like go to doctors' appointments, make a meal, or help her to the car.

I'm angry because these are the only things we can do.

When she was first diagnosed last year, we asked doctors, "What now?" They told us physical therapy, staying active, a positive outlook, a healthy diet. There are a few drugs that can help with the blood pressure fluctuations of MSA.

"That's not what we meant," I would explain. "What can we do about the MSA? The progression?"

We don't have anything for that, they'd say.

I keep asking. Monthly, sometimes weekly, I am in touch with a researcher or a doctor -- anyone who might have new information on MSA or even Parkinson's Disease (a disease cousin to MSA). I learn about their work through news articles or searching medical websites or the MSA Coalition. I write to them. What can be done? Is my mother a candidate? What do your studies show?

Nearly all of them write back to me. Almost every single one. They take time out of their work to tell me, kindly, we're trying. And some apologize: The funding is limited...

Government funding for biomedical research has fallen more than 20 percent in the last 10 years. If most of those government research dollars go to major diseases, the 30 million rest of us (many children) affected by some sort of rare disease are offered little hope.

So I write to the politicians. Please make medical research a priority. And they don't write back to me. Or they send me back a generic letter about health care. Or it's a form response that is completely wrong because their staff member didn't really read my letter at all.

I should be more realistic. My government has bigger fish to fry. We're a small thing.

I'm afraid people are going to keep ending up like us. Of course, I know they will. They do. They are. And I can't bear that thought. I can't bear it.

Imagine: your mother or your wife or your child is hanging from the side of a bridge. No one can save her. She looks at you. And all you can do is make sure the railing she holds isn't cold.