Eric Von Schaumburg, an advocate for the fight against ALS, has been battling the disease for nearly three years.
It’s the end of May and a time for graduation and life change for many high school and college students. It’s also a time for inspirational speeches. At Independence Plus, Inc., we were recently honored to read a speech written by our patient Eric Von Schaumburg, who was diagnosed with ALS (also known as Lou Gehrig’s disease) nearly three years ago at the age of 29. Since then, Eric and his family have become amazing advocates to raise awareness of this devastating progressive neurodegenerative disease. Eric, a 2001 graduate of Schaumburg High School, was given the school’s 2016 Distinguished Alumni Award at a ceremony held last week. His speech was not only inspiring to those in attendance at that event, but also to us at IPI. We thought it was so wonderful that we asked Eric for permission to share it with everyone else. Below is a transcript of his acceptance speech, which was given by his brother Josh.
To view the video of this speech, visit Eric’s Facebook page at www.facebook.com/fightlikeachampion.org.
To read Eric’s ongoing blog of his fight against ALS, visit www.fightlikeachampion.org.
Eric Von Schaumburg’s speech:
It was 4:57 pm on Wednesday June 19, 2013. I was in the neurologist’s office with my now wife and Mom. We were still trying to figure out why I was slurring some words – almost like a child’s lisp. Surely there would be some speech therapy; I cringed at the idea of transforming into a 3rd grader, working on my ‘s’s’ in small box room with a speech therapist.
The day was long and I was anxious. Not anxious from my newly pronounced lisp but because the Hawks needed a win in Boston to tie the Stanley Cup at 2 games apiece. The doctor came in to review my brain MRI. It looked good, clean of anything that would cause any speaking issues.
Why should I be worried? I was 29 years old and had 2 sick days in 8 years of work. I had the perfect life. Awesome family and friends. Success on the sports fields and in the classrooms of SHS and at U of I. I had my dream sales job downtown in financial advising, working my tail off to quickly move up the corporate ladder. I had a sweet condo on Michigan Ave. I was in the best physical shape of my life. And the one thing that had alluded me – my dream girl – I had found 16 months prior in a beautiful angel named Lindsay. Life was perfect. Heck, I even had this town named after me.
And then came the doctor’s words, tingling down my spine “I think you have ALS, or Lou Gehrig’s disease.” I knew very little but could tell by his tone that it was awful. But wasn’t that for older people? And wasn’t it cured like 50 years ago? No was the answer; I found out I had a life expectancy of 2-5 years. All my muscles would stop working leading to paralysis but my mind would remain intact; trapped and helpless as I eventually die of respiratory failure. The odds were better for me to win the Powerball Jackpot then be diagnosed with sporadic ALS before Age 30.
At this point you may think I had a decision to make regarding how I wished to spend the rest of my life. Was I going to be angry and dejected, wishing to speed up death? Was I going to change my loving, outgoing personality? Or was I going to become inspirational, using this diagnosis as a catalyst to challenge others?
Truth is, this decision was already made for me. Rather made by me… back when I was your age. It was pulling an all-nighter to make sure my AP Calculus exam went perfectly.
It was diving in the parking lot baseball practices, sacrificing a bloody elbow because I was so darn competitive. This was freaking practice, by the way. It was in the weight room and August 2-a-day football practices when my body could take no more but my mind kept going.
It was always having an ear-to-ear smile, holding the door for strangers and befriending kids who didn’t seem to have very many friends. It was choosing to have fun, be a smart ass and love life. So when faced with the fight of my life, I didn’t know any other way to tackle it.
Oh by the way, I have this thing called the ALS card. When you’re dying with ALS, you can get away with literally anything; that includes cursing in public speeches to high schoolers.
To be completely honest with you, I wasn’t even sure if I wanted to accept this award. My left arm is basically done moving, and my hands are so curled up I’m down to typing with one finger. So writing out this speech was quite time consuming. I spend most of my days communicating my basic needs to my family and nursing staff, trying to write my blogs and viewing 94.7% of Netflix’s catalog.
More than anything, I hate being dependent on others, and I hate being considered as some “charity case.” I hate feeling even a hint of being patronized. I couldn’t help but realize the fact that I would never be receiving this award if it weren’t for this terrible disease. Why should I receive an award for navigating ALS the only way I knew how?
But then, I talked it over with my family and I went into deep thought, like I always do when I write. I realized that, even though I would not be receiving this award if it were not for this horrible disease, ALS is not what this award is about, and it’s certainly not what I’m about.
This isn’t some charity award. This award is for the people I’ve inspired in choosing to live life with the same zest as always, even while my body deteriorates. It’s for the newly diagnosed patients I’ve connected with and helped make life a little bit easier and less scary. It’s for the perseverance I’ve displayed through the intense pain and suffering I’ve endured.
You see, “Quality of Life” is merely a perception of our adaptability to life’s challenges and whether that adaptability allows us to continue to pursue happiness. Perception is reality. As someone who loves every ticking second of my life, you can bet I will always have a high quality of life. And that will, that strength, comes from thousands of little decisions I made around the time I was your age.
Nothing shows you what a person’s made of more than what he does when his back is up against the wall. Anyone can play hard when the ball is bouncing their way, but the true measure of a human is the way she acts when adversity strikes… whether it’s the 4th quarter and you’re down 2 scores, or you’re struggling to understand the study guide for your physics final, or you’re battling one of the world’s most devastating diseases — what are you gonna do when your back is up against the wall?
Are you going to quit… because it sure as hell would be a lot easier… Or are you going to stare down that challenge and give it everything you have and show life what you’re made of! I wish you the very best in your future endeavors and thanks especially to Coach Stilling and Schaumburg High School community for all the support I’ve received over the years. Remember, you have the opportunity right now to shape the rest of your life. Good luck and thank you.
About ALS:
ALS is a progressive, degenerative disease of the motor neurons of the brain stem and spinal cord, characterized by a general weakening and wasting of the voluntary muscles, and eventually complete paralysis. It is presently incurable and usually is fatal within two to five years.
According to The ALS Association at www.alsa.org:
- ALS usually strikes between the ages of 40 and 70
- An estimated 30,000 Americans have ALS at any given time
- Military veterans are twice as likely as the general population to develop ALS
May is ALS Awareness Month, a time to help increase public awareness of this devastating disease. Click here to find out how you can get involved.