In May 2009, my mom came to visit me just before I graduated from law school. My dad and sisters were scheduled to arrive a couple of days later. The day after she arrived, I met her for lunch.

My mom had been undergoing medical tests for several months because her speech had started to be slurred and several other mysterious symptoms had presented themselves over the past few years. When I asked her if the doctors had discovered the cause of her symptoms, she blurted out, The neurologist thinks that I have ALS [amyotrophic lateral sclerosis] . Im scared to die this way. Eventually, I will be unable to speak and eat on my own. ... I will never make it to your wedding.

I froze in my chair. The words were barely sinking in. The way she looked that day her shocking weight loss and the visible despair on her face is still etched into my brain.

To understand how devastating it was for my family when my mom was diagnosed with ALS a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord, according to the ALS Association you need to understand my mom, Sarah. For my whole life, for better or worse, she was not like any of the other mothers I knew. She was one of the few female partners in her D.C. law firm and one of the few moms in a senior position. She embarrassed me by yelling out the chorus of Salt-N-Pepas Lets Talk About Sex in front of my friends in elementary school, always arrived late and sometimes demonstrated her New York roots by flipping off cab drivers when taking me to school. She was short but athletic and tough. I can count on one hand the number of times that I saw her cry in my life, and I distinctly remember when I was finally old enough to beat her in a running or swimming contest. The most common expression that we heard from her was, Reilly, you are so full of shit, which was directed at my dad, typically during a debate about politics. I simply could not believe that someone as seemingly invincible and full of life as my mom was now facing a disease that would kill her in just a matter of years, if not sooner.

When I found out about my moms diagnosis, like most people, I knew virtually nothing about ALS. Weeks before my graduation weekend, my dad had badgered me to let him drive me from my law school in Indiana back to D.C., which seemed ridiculous, given my age. But as he drove my car home, I sobbed the whole way. Katie, please breathe, he sporadically reminded me as I read every article I could find on Google about ALS. He explained the details of the agonizing process of elimination they underwent to arrive at the diagnosis. He painfully recalled how a callous neurologist gleefully exclaimed, She has ALS! to my parents after he finally determined what was wrong with her. Dad promised we would figure it out. These people clearly dont know my mom. She will beat this, I declared.

The timing of my moms diagnosis was lucky, in that I had been recently deferred as an associate at a law firm in New York, which enabled me to move in with my parents. Before I learned about my moms ALS, a bad breakup was the most intense heartbreak I had experienced in my life. I was not personally familiar with death at all, as all my grandparents had passed before I was even a year old and I never had a close relationship with anyone who had died.

Initially, my mom didnt want to share the diagnosis with anyone outside our immediate family and a couple of close family friends. We desperately hoped that it was a mistake. So we kept the news tight, leaking it only to select individuals when my mom felt comfortable. It felt like a weighted blanket of shame. For months, although I understood it wasnt logical, I firmly believed that she would somehow defeat this terminal illness. We would just hunker down as a family and research, fight and win.

Months later, when we could no longer hide moms symptoms, I strategically began to share her diagnosis with friends. Frequently, the person I told was unaware of what exactly ALS was or what it did to its victims, so I would then detail the way that she was going to die losing the ability to speak, eat and eventually breathe as all her muscles slowly atrophied while her cognition remained intact. While I said each word out loud, I felt more and more alone as I realized that no one knew or could really understand what we were facing. Each word physically hurt to say. The conversation would usually end with me saying, No, there is no cure, as friends inquired about our treatment plan.