The Day Everything Changed

We all experience specific days that indelibly alter the course of our lives from what we thought life would be. These specific days include the day we take our last final exam, the day we meet the love of our lives, the day we first become parents, the day we finally get the job promotion we worked so hard to earn, amongst others similar in nature. Additionally, such days can include the day we lose a loved one, the day a marriage ends, the day our job is included in the latest round of layoffs, and the day we are diagnosed with a disease, especially the terminal kinds. No one wants to experience the latter type of days mentioned. Such days cause pain and suffering and grief like no others. However, it is days such as these that, I believe, define our character and destiny for however much time we have left in this life.

On December 3, 2020, I was diagnosed with ALS (i.e., Lou Gehrig’s disease) at the age of 39. I recall this day with such clarity. Going into this appointment, I knew an ALS diagnosis was a possibility, but it did not lessen the blow when my neurologist at the time said, “You have ALS.”

Unbeknownst to myself, my journey with ALS started in May of 2019. I began noticing involuntary twitching, what I later learned are called fasciculations, in my biceps. Initially, I did not think much of it. After all, I was in my second to last semester of grad school, I was working full-time, exercising regularly, and being a husband and a father, and so, I simply attributed the fasciculations to nearly 2 years of being more stressed and sleep deprived. However, over the next few months and after graduation, my fasciculations became more incessant and had spread to my chest and legs. Even then, I did not think too much of it, but after much encouragement from my wife, I went to see a neurologist in November of 2019.

At this appointment, the neurologist performed various strength tests and an EMG on me. I recall sitting in the waiting room prior to the appointment thinking about the gravity of waiting to see a neurologist, and for the first time considering that this could be something serious. But I quickly consoled myself by thinking I am only 39 years old, I eat healthy and exercise regularly, and I have never been a sickly person. To my relief, the neurologist agreed with me by saying I have nothing to worry about, I am only experiencing benign fasciculation syndrome, and that most of the adult population also experience fasciculations. So, I left that appointment feeling good and optimistic about the future.

Fast-forward a few months; nearly everything is shut down or closed due to the COVID-19 pandemic. My fasciculations become more pronounced and incessant, but still, I do not worry because just a few months prior, the neurologist told me I had nothing to worry about. However, that summer of 2020 I began noticing other issues such as hand dexterity problems, but I attributed that to possible carpal tunnel syndrome since I worked in front of a computer typing day in and day out. And when the gyms reopened, I noticed some loss of strength and endurance, which came as a surprise because I continued to jog and exercise regularly throughout the shutdown. I can remember thinking to myself, “Damn, I guess I just need to work harder.” But nothing I tried helped; I was only getting weaker.

So, once again, my wife encouraged me to make another appointment with a neurologist, but with a different neurologist this time around. As per usual, I dragged my feet in finding a new neurologist and making an appointment, but I eventually acquiesced and made an appointment with a new neurologist in late October of 2020. This time around things were different. I had several appointments with this neurologist and after only a few weeks, I found myself sitting in his office hearing him tell me I have ALS.

I vividly remember standing in line to check out, and while standing there I just looked at the ground, trying to wrap my mind around what I had just heard. Trying to think about next steps, but not knowing which direction to go. All I knew in that moment was that I needed God to help me traverse the unknown that awaited my family and me. Additionally, I recall thinking that none of this was real; I didn’t feel sick and I especially did not feel like I was dying. And after all, isn’t ALS supposed to be an “old man’s disease?”

After I walked out of the doctor’s office, I got into my car where my wife was waiting for me. She asked me what the doctor said. I looked into her eyes not having to say anything, she knew. Not knowing what to do, we just sat in the car for a while crying and holding one another, not wanting to move or leave because then the new and unwanted future with ALS would begin. This day had just changed everything about what we thought our lives would be like together moving forward.