How to Live a Thousand Lives (and fight to cure spinal muscular atrophy)

Blog

January 14, 2024 How to Live a Thousand Lives

“I write so I can live a thousand lives.”

A young woman named Shea Megale wrote this which, as a fellow writer, I loved.  She is one of the most daring and amazing persons I’ve had the opportunity to meet.

Shea shared parts of her life story so far (she’s 29) at our Lions Club fall conference in Fredericksburg Va. Her third service dog matches her for his remarkable job as a trained and loving companion. Her second service dog helped her graduate from the University of Virginia (even crossing the stage with her if I understand correctly, a school which is no whiz to get into, founded by Thomas Jefferson in 1819). She also managed to live on the university campus without special helpers, except for her dog. She is an author of numerous books and began writing real publishable books at the age of 13, starring her first service dog Mercer.

But let’s begin at the beginning. She is an ambassador for those everywhere who were born with or have experienced huge difficulties and challenges. But, she is not letting the difficulties stop her. She and her family support an organization called “Canine Companions for Independence,” for people who need the help of a dog to get around and to survive independently.

Shea was born with spinal muscular atrophy, which is a genetic “neuromuscular” condition. She is quite short and is confined to a motorized wheelchair, but she is one of the most entertaining and uplifting speakers I’ve ever heard. She has traveled all over the world, organizing her own itineraries and transportation with drivers that she lines up. 

She tells stories both amusing and remarkable. She told how she and her service dog were on a beach somewhere (I think Australia) and something slid off her lap and onto some sand. She reached for it rather than give a command to her dog, and began to slide out of her electric wheelchair. The dog was ready for her, and pushed his body to her legs to keep her from slipping further. I forget (and it’s not in my notes) how she got out of that dilemma but I know she was very thankful for the quick action of the dog.

Another story I loved was about her helping write and produce a short historical film in the Czech Republic. In addition to the assistance of her service dog, she had a helper who didn’t speak English at all, and Shea did not speak Czechoslovak. This woman was helping her take a shower but the water was way too cold for Shea’s comfort. To communicate, she made her teeth chatter and demonstrated shivering, which finally connected! Her finished film also connected: won the President’s Award from the Film Academy of Miroslav Ondricek. The academy is named for Ondricek as a prolific Czech cinematographer who had also worked in the U.S. on films such as Amadeus and Hair.

Shea has been invited to ring the opening bell on Wall Street for NASDAQ, was the youngest ever member of the National Press Club in Washington, D.C., spoke on the USS Intrepid, appeared on The Today Show, launched a partnership with Build-A-Bear and FAO Schwarz, and, most importantly for Shea, “speaking at schools all over the country” which she loves doing.

Shea’s family was and is very close, but they experienced what way too many families have gone through. In a 2018 article for a UVA publication, I learned that Shea’s older brother Matt struggled with opioid addiction for years eventually dying from it. After he died, Shea wrote a memoir of their close relationship, telling people he was much more than his addiction. “He played a huge role in her life, as a brother and a caregiver, and he encouraged and helped her pursue all sorts of adventures, from ziplining to skiing to traveling the world,” the article explained.

Opioid addiction “is like cancer now,” Shea noted. “Everyone knows someone that is affected by it. There have been more deaths from opioids than deaths from the entire Vietnam War.”

Shea writes novels, especially young adult fiction, science fiction, and fantasy–which may or may not be your thing; her blog notes that “consciously and unconsciously, nearly every character she creates has an element of disability: physical, emotional, or mental.”

I wouldn’t mind hearing her speak again. Just three of the leadership lessons she left with us as Lions Club leaders were these:

1. Show up. Even if you don’t know what to say or do when you get there (a funeral, a friend’s recital, an interview, etc.), you’ve already done half the work and your presence tells others that this event or person is important to you.
2. Make an effort to remember things. Important dates for others (anniversary of a death, birthdays, etc., details of their lives they share with you, their favorite things and their dreams. This is hard, but it is done by really listening.
3. Never ask others to do something you won’t do right alongside them.  

–Shea C. Megale. Find her blog at S. C. Megale – Home (scmegale.com)

You can find out more about Canine Companions for Independence here.

Lions Clubs International are known for their training of leader dogs especially for those with blind or other vision issues.