My Diagnosis Was a Death Sentence. It Started With a Strange Symptom

I got a death sentence at the ripe age of 29.
I’d started noticing some strange tightness in my calf, and that I was now walking really, really slowly. I didn’t think much of it because I was young, and just assumed that I’d done too much Pilates.
Then, that calf tightness turned into a limp on my left side.
I was living in New York City at the time and it is not a place to walk slowly. People very quickly started pointing out that I had a limp, so I ran to my sister who’s a doctor and she had me walk on my heels.
As I was walking on my heels, my right foot was able to, but my left foot would just slam down into the ground instead.
That moment was the kickoff point for a four-year run of trying to get a diagnosis.
I went to every type of doctor you could imagine. I had every type of test you can imagine. At one point they brought up polio as a possibility—that’s how deep we were going with the medical theories.
The four years of testing were strange. I was in denial that it was anything serious, and yet I wasn’t improving no matter how much personal training I did.
Walking around was getting tougher in NYC. I was so much slower than everyone else. I’m sure I was worried deep down, but I tried to ignore it and carry on with my life as normal.
My doctors brought up ALS about two years into that journey. ALS—amyotrophic lateral sclerosis—is an incurable and terminal progressive neurodegenerative disease.
Put simply, your brain slowly loses its ability to control your muscles, which then waste away over time.
Because only one of my limbs was showing symptoms at that time—specifically, my left foot—my doctors weren’t able to give an ALS diagnosis. They just weren’t certain and needed more evidence.
I was devastated, but also in such disbelief. The first neurologist who brought up ALS ordered a genetic test, and when that came back negative, I assumed I was in the clear.
So we just assumed the doctor made a mistake. I was progressing so slowly back then that we thought there was no way it was ALS.
After four years, my right foot started acting up too, and that was the point where I was able to get an official diagnosis of ALS, which is also known as Lou Gehrig’s disease. It’s the disease Stephen Hawking had.
When diagnosed, doctors told me I probably only had two to five years to live, and there are a couple of medications that might slow things down, but they weren’t totally sure of that.
They told me there is no cure for ALS, and that I would be paralyzed. I was going to lose the ability to move, talk, swallow, breathe—all of it.
That day sucked, and so did the following couple of months. I pretty much crawled into bed and ate a pack of M&Ms a day.
A few weeks later, I had a friend’s wedding, and I was a bridesmaid. I showed up to the wedding using a walker and in a bridesmaid’s dress that was way too tight because of all the M&Ms.
I turned to a friend and said: “Let’s leave.” But she said: “Or, we can make this really fun.”
Half an hour later, we had the bride doing the limbo under my walker and I was giving walker rides all over the dancefloor.
That was the point where I thought to myself: “OK, we’ve got to live life in dog years here. If I’m being told two to five years, we’ve got to make every one of those years worth seven.”
It’s kind of like when you live in New York City but you never do any of the tourist attractions because you think you’ll always have time for that, versus going to the city for one week and doing everything because you don’t know when you’ll be back.
I feel like that’s my life. I’m not sure how much time I’m going to have, so I’m going to do it all, have so much fun, and act like a tourist of my own life.
When I was first diagnosed, I didn’t want to talk about it. I was in shock for a couple of months. Then I was able to start opening up to friends and family and let them support me. They’ve all been great, and laugh and cry along with me.
I’m now 35, so I’ve had symptoms for six years and diagnosed for almost two years with my cute little death sentence.
I’ve shared my story online in the hopes of increasing awareness and funding toward ALS, and that’s opened a lot of opportunities for me: Speaking at conferences, traveling to meet with researchers, and meeting so many fellow people living with ALS.
I think we all assume we’re invincible until we learn the hard way. So my advice to everyone is this: Just enjoy life as much as possible, and laugh a lot.
Brooke Eby lives with ALS. You can follow her journey on TikTok.
All views expressed are the author’s own.
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