By Eddie Ilarraza
Eddie Ilarraza was diagnosed with ALS in 2002, and while his body may have slowly succumbed to the disease over the years, his mind and his spirit have not. Eddie graciously shared his story about his personal journey living with ALS, and how his determination to do whatever it takes to achieve his hopes and dreams has prevailed.
My name is Eliseo; most people call me Eddie. I was diagnosed with Amyotrophic Lateral Sclerosis (ALS), aka Lou Gehrig disease, on November 23, 2002.
It was a horror when I knew I was in a terminal state. I only thought about dying every day and night; I hardly slept because day and night, it was haunting me to die so young, and all my hopes and dreams were gone forever.
Just before I was diagnosed with ALS, I was a very active guy. I would go to the gym in my time off, I was once a case manager at a nonprofit organization reaching out to the homeless, educating the public on HIV-aids and harm reduction and distributed flyers of different organizations where they could be helped.
At the same time, I was going to college for my bachelor's degree in human services. I obtained my bachelor's degree, and then I moved on to work as a drug counsellor in a detox unit. Also, I loved playing baseball, basketball and dancing to all types of music. As you can see, I felt it was not my time to go so quickly.
Then, as ALS progressed, I started getting weaker and weaker until I became bed bound. I lost my ability to eat by mouth and got a peg tube. I lost my ability to breathe normally and got a trach. I became severely anxious, and I could not sleep without sleeping medication.
With everything against me, I never lost my passion for helping others. It came to my mind to start writing my life story, poetry, and music. I obtained a communication device that can access the internet, and I found a self-publishing company, and I published four inspirational, positive books.
Subsequently, I thought with my ability to write, why not apply for my master's in social work online? And I did. I got accepted for the master’s in social work with Hispanic children and families at Our Lady of the Lake University.
And, now, on May 8, 2021, I graduated.
My first book is called "Changing Views," second "Psalms on the Bridge," third "The Zealot Besotted Purpose, and the fourth book is called "Frozen for a Higher Purpose."
In conclusion, I want to say to all who are reading this succinct story to never give up on fulfilling your dreams. With the help of organizations like The ALS Association, family and friends, and many others who help you, you can do all things if you simply believe you can. Then, nothing shall be impossible.
If you want to learn more about how you can get involved and make a difference for people living with ALS and their families, CLICK HERE.
Special thanks to Eddie Ilarraza and The ALS Association Greater New York Chapter for allowing us to share his inspiring story of hope and determination.