Brenda’s Story

Brenda Arredondo smiles while wearing a black top, long necklace, and ring, while sitting on a mobility scooter and holding a gold cane.

Brenda

I’d always wanted to be one in a million. I just never thought it would be this way.

In 2017, I received the 1-in-10-million diagnosis of primary lateral sclerosis, a much less fatal version of Lou Gehrig’s disease. It was devastating news. My disease became the primary reason (The New York Times, December 2019) my marriage ended just months after my final diagnosis.

In the months following my diagnosis, I looked into medical-aid-in dying laws.  I did not qualify, however, for end-of-life care.  Since I was not terminal within months, this option was not available to me.

But because my disease is so rare, little is known about its progression. This is. especially tragic when it afflicts someone so young. In my case, symptoms began in my mid-20s. While I have remained relatively stable for the past three years, there is just no way to know when my health could quickly deteriorate. 

Currently, I have difficulty with balance, weakness and stiffness in my legs, spasticity (involuntary muscle contractions) in my lower body, and speech and swallowing problems due to the spasticity in my facial muscles. My greatest looming threat, however, is that my breathing may also become severely compromised.

This is why I’ve become active in Us for Autonomy.

I have no interest in suffocating to death through no fault of my own yet at the mercy of my own body. As diseases like mine progress, I believe we should all have the choice to make the decision best for ourselves. If I ever choose to make an end-of-life decision, it will not be made lightly nor without medical advice.

No one will make that choice FOR me, but neither should anyone be able to take that decision FROM me or from anyone else who may find themselves in a position where they're also one in (10) million.