When Augie asks, you get to work! It’s my honor to be a guest author on the first Augie’s Quest email of 2019. We made it! Another year behind us, but don’t dwell on the past. Let’s prepare for what’s ahead and our pursuit of the ultimate goal – a cure for ALS. 2019 will unlock new mysteries of this dreaded disease. We must believe in creating change, not just hoping it happens one day. New year, new focus. Let’s do this!
I decided to write this on a day where I am really struggling, with the goal of not holding anything back. So, here it goes.
I was diagnosed back in March of 2013 at the age of 30, with my first noticeable symptoms dating back to the summer of 2011. Some would say my progression is slow simply because I am still alive, however, there is nothing slow about losing parts of your life or things that make you who you are.
ALS has destroyed so much. It’s decimated my physical body. I can no longer breathe on my own for more than a few minutes. So now a days, you will always see me wearing the mask to my bipap machine. I lost my voice, so I communicate through an eye gaze system. I can’t move on my own, so you will see me in a wheelchair. These things you can physically notice, but this disease doesn’t stop there.
The emotional and mental aspect, if you ask me, is even more devastating. It changed me and the person I loved the most – so much that our marriage didn’t survive. It crushes me. Some couples find a way through it, many do not. I am a young man. Everyone around me is having kids, building families, the things every man desires as he gets older. I am not, and it’s something I will never get over. ALS is an emotional roller coaster unlike anything you could ever imagine. If you’re not crying, let me tell you, I am.
This is where the search for new meaning, new focus, and new goals is what gives me hope. Despite all the challenges I face, I pride myself on my mental strength. My desire to inspire others to find their smile all while fighting to end ALS — it’s what keeps me going.
The new year is the perfect time to analyze ourselves and see what we do have in life, not focus on what we don’t have or what we’ve lost. 2019 brings new beginnings. It’s a time to move forward, not backward.
ALS can take and take and take, but I am still here. You are still here. Please join me in kicking off the new year with a renewed sense of appreciation for being alive today. Not yesterday, not last year, today. Let’s start with today.
Continue supporting Augie’s Quest so one day ALS will stop taking lives away and just be another disease we have treatments for, or God willing, a cure. 2019 – we are coming for you!
Pat Quinn lives in Yonkers, NY and is an ALS advocate, the co-founder of the Ice Bucket Challenge, a friend and champion to Augie’s Quest and just an all-around awesome guy. Follow Pat at Quinn for the Win.