Former teacher with ALS ‘blessed’ by support
People will often tell you in life to expect the unexpected. But nobody expects a diagnosis like the one Ron “RJ” Rounds received at 54 years old in 2016.
Rounds was an avid racquetball player, played bass guitar in a rock band called “Midlife Crisis” and was nearing 30 years of teaching at Exeter-West Greenwich High School. He was an active father of five and a loving husband to his wife of 32 years, Julie.
So “unexpected” may not properly convey the magnitude of Rounds’ diagnosis with amyotrophic lateral sclerosis, once known as Lou Gehrig’s Disease and now known colloquially as simply ALS. The disease affects the nervous system, causing brain and spinal cells to stop functioning, which degrades the body’s muscles and muscular functions. The disease can be treated but there is currently no cure.
The unforgiving disease first forced Rounds off the racquetball court and out of the classroom to an early retirement. It continued to progress, and now Rounds is confined to a wheelchair and must utilize a breathing apparatus. The muscular degeneration has taken his ability to speak as well.
However, one might be surprised to visit Rounds in his Warwick home and not be met with the look of a defeated man, but instead a man who smiles with genuine kindness and life in his eyes. He’ll tell you – through his improvised communication technique that utilizes an iPhone, a Bluetooth keyboard and a Google Doc – that he’s blessed, lucky even, to be where he is today.
Rounds said that he was upset and questioned how the diagnosis could happen to him at first. Few could blame him for feeling that way after being forced to swallow such a bitter reality. However the bitterness didn’t last long.
“Then you have time to reflect,” he typed. “Why not me?”
Julie led the effort to reconfigure the house into a wheelchair accessible space complete with a ramp leading up to the rear entryway. She actively engages within the ALS community to keep an ear out for new treatments, support groups and anything that may help Ron.
“You learn to adapt and find out what you need and plan ahead,” she said of living with the disease firsthand through her husband. “It’s accepting, more or less, the disease and making plans for how to deal with it.”
Ron and Julie are immensely thankful to the Rhode Island chapter of the ALS Association, which has helped coordinate medical appointments, lend necessary medical and technical equipment and provided shuttle rides.
“They have been a godsend,” Ron said.
The Exeter-West Greenwich community has joined the support network as well, writing letters and sending cards and gifts. Now one of Ron’s former students, Shawn Flanagan, has organized a fundraising comedy show where all proceeds from $20 ticket sales will benefit the Rhode Island ALS Association.
The event, “Riffing for a Cure,” is taking place on Sunday, Dec. 3 at the Avon Cinema in Providence. Its premise, “riffing,” is a style of comedy where people inject dialogue over the top of traditionally older and lower quality (read: bad) movies. The comedic style was popularized by the television show Mystery Science Theater 3000, which was recently revived by Netflix in April. The event for ALS, however, will be done live.
To purchase tickets visit www.eventbrite.com/e/riffing-for-a-cure-2017-tickets-38567919686. If you are unable to attend the event, the link gives you an option to donate directly to the ALS Association.
“I’m okay if we sell the theater out and nobody laughs – because at least we’ll have done a good thing,” Flanagan said. “If we sell tickets that’s all that matters.”
Flanagan developed a friendship with Rounds starting when he was 17, and had him for an English teacher his senior year. Flanagan and his friend Kevin Decristofano, who is helping produce and riff the Dec. 3 show, used to put on a two-hour public access television show based on riffing where Ron was the producer.
Despite the incredibly unfair plight he has inherited and despite missing playing racquetball a lot, Rounds said that he truly feels blessed to have individuals, family members, former students, colleagues and total strangers who seek to help him through fundraising, participating in ALS walks or just sending a note or card saying they’re thinking of him.
“I feel sad for people who don’t have support,” he wrote. “The Exeter-West Greenwich community is great…my wife is my angel…I’m blessed to have time to reflect on life. Not everyone does.”
As for advice, take it from somebody who has had the rug of what they had always known to be their life pulled out from underneath them with little to no warning.
“You want to make every day the best you can. You need to,” Rounds wrote. “Be calm and be strong.”