Before retiring, I considered volunteering for a charitable organization. Little did I know the path my life would take.
My Journey to Becoming a Lary
In early 2022, I was diagnosed with throat cancer. Faced with the decision between radiation and chemotherapy, or a laryngectomy. A laryngectomy involves removing the voice box and any affected tissues, separating the trachea (windpipe) and esophagus (food pipe), and redirecting the trachea to a hole in the neck called a “stoma.” This procedure leaves patients without their natural voice, and requires them to breathe through their neck for the rest of their lives.
After consulting with five doctors who advised that the tumor was too dense for radiation, I opted for the laryngectomy. I underwent surgery on April 4, 2022 at Emory Winship in Atlanta. You can read more about my laryngectomy here.
Discovering Lary’s Speakeasy
During my hospital stay, my Speech-Language Pathologist (SLP) recommended a Facebook group called “Lary’s Speakeasy.” This group consists of laryngectomees (we call ourselves “Larys”), their relatives, caregivers, SLPs, and other medical professionals.
The initial shock of losing one’s voice can be overwhelming, and depression is common among Larys. However, the group provided me with invaluable support and showed me that I was not alone in this journey.
With approximately 10,000 Larys in the U.S. – .003% of the adult population -. Encountering another one of us in everyday life is rare. Lary’s Speakeasy offered me a platform to connect with others who had similar experiences where I could ask questions and receive guidance.
But beyond a support group, Lary’s Speakeasy is a 501(c)(3) nonprofit dedicated to providing essential laryngectomy supplies nationwide at no cost, addressing a critical need often unmet by insurance companies and Medicaid.
My Volunteering Journey
Later in 2022, a board member noticed from my Facebook profile that I had experience in web design and asked if I could improve their website. I offered to completely rebuild it at no charge, as the organization had been a great help during my early recovery. We launched the new site in February 2023, you can visit that website here. And I subsequently set up their Twitter (now “X”) account .
In October, I was invited to join the “Our Team” page and later asked to become a member of the Board of Directors. I accepted and have since created a YouTube channel, as well as Instagram and TikTok accounts. My primary role involves maintaining the website and social media presence, while other board members and volunteers manage the distribution of supplies to Larys in need.
Positive Thinking Transforms Tragedy
I share my story not to focus on myself, but to illustrate how positive thinking can help overcome adversity. Becoming a Lary prompted me to assist others who did not receive the same level of care that I received. While prestigious hospitals like Emory Winship, M.D. Anderson, the Mayo Clinic, and Johns Hopkins, among others provide excellent laryngectomy care, many smaller hospitals lack the necessary resources. It is disheartening to hear stories of other Larys struggling to find the information and supplies they need post-surgery (I count rant for a while about this.)
Two years after my surgery, I can now help new Larys, just as the veterans helped me. This cycle of support turns what was a personal tragedy into a positive force.
Embracing a Positive Outlook
Although I had planned to volunteer in retirement, I never anticipated this path. Working with Lary’s Speakeasy has allowed me to turn my experience into something meaningful. While living without a natural voice and breathing through a hole in my neck comes with challenges, my life has largely returned to normal, thanks to a TransEsophageal Prosthesis (TEP), which is how I speak now.
This experience has given me the opportunity to support others who are struggling, ensuring they have access to essential supplies and information.
Breathing through my neck is nothing compared to what some people go through. Anytime I visit a hospital, I am reminded that many people face far greater challenges.
The Power Of The Positive
I am not some sort of positive thinking guru, but I believe in finding good in every situation. Focusing on the positive aspects of life helped me cope with my condition. Ignoring the negatives beyond our control and embracing the positives can significantly improve our outlook and well-being.
If you know another Lary or a caregiver of one, or someone in a related medical prefession, please point them to Lary’s Speakeasy.
And consider donating to us as well. We are an all-volunteer organization and we rely solely on donations, both monetarily and donation of supplies.
You can donate to Lary’s Speakeasy here.