Never Say Invisible – The Inspiring Story of Jeremy Schreiber’s Battle with ALS
Jeremy Schreiber, aka Fred the Elephant Boy from the Howard Stern Show, tells his story of living with amyotrophic lateral sclerosis (ALS) in his forthcoming book “Never Say Invisible.”
Introduction:
Tragically, Jeremy Schreiber, also known as Fred the Elephant Boy from the Howard Stern Show, passed away in October 2021 at the young age of 42. However, his legacy will live on through his powerful words in his forthcoming book “Never Say Invisible.” Diagnosed with ALS at the age of 39, Schreiber refused to let the disease define him and instead, made the decision to “confront it head-on.” In this book, he shares his experiences living with a disability and the difficulties of navigating a world that is not always accommodating for those with disabilities.
Diagnosis and Initial Reaction
When Jeremy Schreiber received his diagnosis of amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, he was faced with a choice. He could let the disease defeat him or he could fight back. Schreiber chose the latter, saying in his book, “I had a choice – climb into bed, pull the covers over my head, or say ‘[expletive] it’ and confront it head-on.”
Writing “Never Say Invisible”
Within six months of receiving his diagnosis, Schreiber began writing his book “Never Say Invisible.” In it, he shares the difficulties he faced as a person with a disability, including the challenges of navigating sidewalks and doors that are not accessible. He also touches on the lack of representation and recognition of people with disabilities in society, saying, “It was really important for him to get the word out so that people would start listening and saying, ‘Well, we’re human too, we’re not invisible.'” Unfortunately, Schreiber lost the ability to type with his eyes in mid-2021 and was unable to fully finish the book before his passing. However, with the help of Sandra Jonas Publishing, the book will be edited, completed, and made available for purchase this spring.
Advocacy for the ALS Community
Despite the physical challenges he faced, Schreiber remained committed to advocating for those with ALS and disabilities. He spoke at the ALS Association Advocacy Conference in Washington, D.C. in the summer of 2019 and, with a delegation from various ALS association chapters, successfully lobbied Congress to end a rule that forced ALS patients to wait five months to receive Social Security disability benefits. Schreiber also testified in the New Jersey legislature calling for more funding for ALS research.
Conclusion:
Jeremy Schreiber, also known as Fred the Elephant Boy from the Howard Stern Show, was an inspiration to many. Despite facing the challenges of living with a disability, he refused to let ALS define him and instead, made the decision to “confront it head-on.” His forthcoming book “Never Say Invisible” will share his experiences and bring awareness to the difficulties faced by people with disabilities. Schreiber’s advocacy for the ALS community and those with disabilities will continue to make an impact long after his passing.
FAQs:
- What is ALS? Amyotrophic lateral sclerosis (ALS) is a progressive neurological disease that affects the nerve cells responsible for controlling voluntary muscles.
- When is Jeremy Schreiber’s book “Never Say Invisible” expected to be released? The book is expected to be available for purchase this spring.
- What advocacy work did Jeremy Schreiber do for the
