I am confident that one day we will end ALS
Growing up, sports were an integral part of my life. I played baseball, basketball, soccer, football and was on the local swim team, too. When I graduated from high school in 2013, the next part of my journey was heading up to the University of Oregon (Go Ducks!) to study Sports Business. While at Oregon, I worked for the athletic department and football team and was also the Vice President of the University’s sports business club, so not to toot my own horn here, but I was doing everything I could to immerse myself in the community, gain experience, and ultimately set myself up for a successful career in sports upon graduation.
However, during Fall term of my senior year, I began to experience random muscle fatigue, muscle twitches, and cramps in my arms and legs. At first, I thought maybe I just didn’t get enough sleep the night before or didn’t get proper nutrition and hydration for the day. But as days and weeks passed, it continued. Normal things like taking notes in class, walking to and from campus, and working out at the gym started to become progressively difficult. As it became obvious that something was off with my body, I made an appointment to see a physician about my symptoms. After that initial visit, I was quickly referred to see a neurologist and two weeks later was doing a series of medical tests to figure out what was going on. I scheduled a follow up appointment on October 25th, 2016. Within five minutes of walking in the doctor’s office, I was told by the neurologist that I have ALS, or better known as Lou Gehrig’s disease, and I have 2 to 5 years to live. And just like that, my entire life flashed before my eyes as I was told that besides a pill that could potentially extend my life by 6 months, there are no other effective treatments or cures to give myself a fighting chance, and to go home to prepare for the road ahead. To give some perspective, the legend Lou Gehrig was diagnosed with ALS 83 years ago, and yet, people who are being diagnosed with ALS today are still given the same prognosis of 2 to 5 years. I don’t know about you, but to me that is simply unacceptable.
The average age for an ALS diagnosis is 55. I was 21 years old when diagnosed, which goes to show that ALS can affect anyone at any time. It is a relentless disease that has deteriorated every voluntary muscle in my body, leaving me physically paralyzed, and unable to talk, eat, or breathe on my own. I actually wrote this on an iPad that I control with my eye movements, pretty cool shit to be honest. I’m blessed to have technology like this which gives me so much independence and the ability to communicate and interact with others. I’ve even developed a nice game of chess because I’m a competitive guy at heart, and I don’t let my physical limitations get in the way of that. (If anyone here plays chess and ever wants to get their ass kicked in a game online by a guy who plays with his eyes, just let me know.)
Even though my diagnosis threw a major twelve six curveball on the plans I had in life, I haven’t let it stop me from pursuing my passions, creating lifelong memories with my family and friends, and advocating to make a difference in the fight against ALS, especially through the power of sport. As difficult as this disease is, the power of the ALS community is something that I’m continuously inspired by and I deeply value the relationships I’ve made with other people living with ALS and their families, because we fight for each other and in memory of those we’ve lost, like Dwight Clark, Pete Frates, Pat Quinn, Gretchen Piscotty, Kevin Heller, and so many others who were taken too soon.
Because of science and cutting edge research, I am confident that one day we will end ALS. When that day comes, if I’m so blessed to be here to witness it, you can rest assured that I will be having tequila shots and champagne through my feeding tube in celebration, what a mixture. I’ve supported Augie’s Quest and the research at ALS TDI ever since I was diagnosed, and I have so much faith in the important and urgent work they do day in and day out to find treatments and cures for ALS. As many of you may know, ALS takes a village and I’m lucky to be surrounded by so much love and care that my family and caregivers provide me to ensure that I live a meaningful and high quality life.
I’ll leave you with my favorite quote from one of my idols, Steve Gleason, “I believe that my future will be greater than my past.” Every day is a battle, but that quote is a mindset I strive to live by and it keeps me pushing forward every day. Thank you to each and every one of you for being here and being our teammates in the fight against ALS. You are truly making a difference and that gives me so much hope and motivation to keep going. God bless.