It’s hard to say when I first believed I had ataxia. I’ve worried I had it since my mom’s diagnosis in the ’90s, though my fears were casually tucked away when I was a teenager and 20-something.

I think I only first began to believe I had it a couple of years ago, and even then, I’ve really only ever expressed my beliefs openly a handful of times over the course of 2-3 years.

You write things off as long as you can. I fell because I was drunk, or the floor was slippery, or I was not paying enough attention, or I’m just a klutz (all dancers are klutzes, though I stopped competitively dancing in high school). I lost count of the falls but each time a new fall occurred it secretly scared the shit out of me. I’m 36 and I need assistance walking down a flight of stairs. It isn’t normal for someone born able bodied.

On August 3, 2015 I was in Orange County about to start a trial. My first step into the courthouse, I walked on a slightly wet floor and my right ankle gave out and I slipped and fell – with the client and two colleagues looking on. Beyond being incredibly embarrassed, my ankle was throbbing and I could not put weight on my right side. Fortunately my dear friends, Rushika and Romesh, came to my rescue and I had a walking boot to use for the next day of trial.

The August 3 incident freaked me out. It was the worst of my falls and the most public. I immediately worried that I had ataxia but didn’t know what to do about it. Ultimately I did nothing.

Two months later, I was in the cafeteria at work and I fell again. It was completely out of the blue. Not a wet floor or alcohol induced or due to lack of focus. My ankle just gave out. While eating it in front of your boss and client should be more traumatic, this was terrifying – an out of the blue, completely inexplicable loss of bodily function.

I called my doctor and she said she would see me right away. She examined my ankle and found nothing, but nevertheless referred me to an orthopedist. When I went to the orthopedist I only wanted to hear one thing: you need surgery. I didn’t care what that meant in terms of incapacity. I just cared that it was a diagnosis based on some fucked up feature of my ankles or feet. Instead, he said the only thing I did not want to hear: there’s nothing wrong.

Imagine going to a doctor and praying he will tell you that you need a surgery that will keep you on the DL for months. It is all I wanted. The fact there was nothing wrong with my ankles meant the problem must be elsewhere.

This led me to reach out to a very good friend from college who is now a neurologist at UCLA. I told him my fears and he suggested we test for other possible causes first, which we did — all negative. Hallelujah. We then tested for ataxia, only to have my blood sample go missing. I mean seriously. I could have just chickened out there…easy out. But I didn’t and we tested again. Today we received the results confirming what I’ve known for years. I have ataxia.

So what now? Nothing is different and everything is different.

Ataxia isn’t a heart attack. It doesn’t take you right away, it takes away from you piece by piece. Your ability to walk, to type, to speak, to chew. Right now, thank heaven, my walking is only slightly impaired (as is my speech if you know what to listen for). It may be years before we are looking at walkers or wheelchairs. Meanwhile, I promise you I will be doing everything in my power to fight this head on. I have a referral to the top ataxia specialist at UCLA and will participate in any studies that make sense. I will keep myself positive and ask that you stay positive with me.

Ataxia is not well known and I will be using this page, and my diagnosis, as a means to educate those who are unfamiliar with the disease. I will update on my progress as well as research and charitable giving opportunities. I will also be using this website as a memory box — a place I will be able to refer to in the future for things that are important to me.

Today was a tough day. More difficult days lay ahead. But I am surrounded by love and support. I will try very hard to remain mindful of that.

Love, Amy