Hobby helps Liverpool couple move forward despite ALS
Article online since February 10th 2009, 16:10
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Liverpool residents Margo and Gordon O’Neill believe Gordon’s remarkable ability to build model boats has helped him “beat the odds” in his battle with amyotrophic lateral sclerosis (ALS), a progressive and ultimately fatal neuromuscular disease. Jack Kyte Photos
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Hobby helps Liverpool couple move forward despite ALS
By Jack Kyte

FOR THE ADVANCE

NovaNewsNow.com

Margo and Gordon O’Neill moved to Liverpool last summer from their home near Halifax, looking for a slower pace in their retirement years. They found a house on Lawrence St., not far from the Mersey River where they can take advantage of parks, downtown shopping and the local hospital, all within walking distance. It is familiar territory for Margo, a native of nearby Brooklyn.
Not long after settling in, Margo returned home with groceries and noticed something strange going on in the bathroom. Gordon and a family friend were up to something as they stared into the bathtub, smiling from ear to ear.

The two had just launched Gordon’s hand made replica of a New England longliner, just to see if it would float. It was a tight fit, but the “Lady Grace” bobbed perfectly upright, just as any self respecting fishing boat should, engine and all. Gordon just smiled with a “was there ever any doubt” smile.

For Margo and Gordon, moments like this are precious because Gordon has amyotrophic lateral sclerosis (ALS), a progressive and ultimately fatal neuromuscular disease. So they find joy wherever they can. By ALS statistics, Gordon is beating the odds and Margo believes it’s all because of his remarkable ability to build model boats.

His four- foot model of the Lady Grace is a masterpiece. The steel hulled sister ship to the doomed “Andrea Gail,” immortalized in “The Perfect Storm,” takes your eyes into custody as you enter his small workshop. You would never guess the little boat was created without plans, from scratch, simply from a photograph found on-line.

The punch line comes when you grasp the extent of Gordon’s limitations. Typical of this cruel disease, his muscles are very weak. He has limited mobility, cannot walk and has lost his ability to speak.

How can this be? Where do all this beauty, form and attention to detail displayed in the Lady Grace come from, when the movements of its creator are so impaired? And then you realize these things are created from a place that ALS cannot touch, Gordon’s soul.

“I do it to pass the time and I do it to keep on going each day,” he says through his electronic “LIGHTWRITER,” a laptop typewriter which provides an audible voice to the words the muscles in his throat will no longer allow him to say. Building models of fishing boats and dories are simply his way of coping.

Margo smiles and restates her husband’s comments in her own, straightforward way.

“He wouldn’t be here if he didn’t have that hobby,” she says. “He has been working on the Lady Grace for three years, roughly four hours every day.”

The hobby has kept Margo busy with errands to local hobby shops for balsa wood, paint and other materials. Many pieces, like the oars for his North Atlantic fishing dories, simply emerge from a raw piece of wood, after hours of carving and sanding.

Margo and Gordon are on a journey shared by several thousand ALS households across Canada. Only about 10 per cent of those with ALS live more than two to five years following diagnosis, so starting a project that will not be finished for several years is a bold stroke. Gordon is at year 10.

At any given time about 60 Nova Scotians have the disease and although numbers fluctuate, about 20 die in the province each year according to the ALS Society of Nova Scotia. There is no known cure or effective treatment although Canadian ALS research is leading edge.

So families carry on as best they can, shouldering the heartbreaking physical, emotional and financial burdens that few people realize.

“This is our way of life because he has had it (ALS) for so long,” explains Margo.

Jennifer Gardiner, Client Services Coordinator of the ALS Society of Nova Scotia says she feels attitude plays an important role for families coping with the disease. She has worked with many ALS families and believes the O’Neill’s are “a little stronger than many.”

The Society’s Executive Director, Mary Hatcher agrees attitude is a critical factor in maintaining a good quality of life. “In spite of the challenges, they are still husband and wife, caring for each other to the best of their abilities,” she says. “To be valued and to be loved are key.”

As Gordon copes in his way, doing many of the things he has always enjoyed doing, Margo takes things in stride, letting her heart take the lead. What else would you expect from someone who has seven cats, most of whom just turned up at the door. A former staff trainer at the Academy of Learning in Halifax, she retired from her “dream job” to be with Gordon.

“In the summer I’m a walking billboard for ALS because I always wear my ALS t-shirt,” she says with pride.

When living in Halifax, Margo organized “Gordon’s Angels,” a team of volunteers in the annual ALS Walk. This vital fundraiser sponsored by the Society is essential in providing client outreach, supportive technology and equipment and for much needed research.

Along with Margo, the family cats have joined the ALS team as the O’Neill household entertainers. They usually hang out with Gordon as he works, and their everyday antics make the Liverpool couple laugh. They help keep alive the other thing that ALS cannot steal, Gordon’s enduring sense of humour.

The former fisherman, fish cutter and long time Halifax shipyard employee has always been good with his hands, with a knack for building. He built the couple’s Cape Cod style home in Portuguese Cove almost single handedly. The two went on to build their dream getaway cottage on the shores of East Port Medway, just before the cause of Gordon’s failing health was diagnosed.

The final diagnosis changed everything. The disease forced early retirement from the shipyards at age 52. The cottage was never used and has been sold. And the family focus changed from what Gordon can no longer do to what he can do.

Gordon explains how he approaches a new modeling project in one, simple sentence. “You get the shape and everything else should fit 100 per cent,” he says.

As with his house, he discovered an ability to visualize his finished product. And as a fisherman out of Portuguese Cove in his teenage years, the form and rigging of fishing boats is second nature.

The model boat building began out of the blue while he was still working at the shipyards. A fishing boat took his eye at the Sambro wharf and became his first scale model nine months later.

“I knew he could build things, but I did not know the depth of his talent. It blows my mind; absolutely amazing,” says Margo with an ever present smile.

Gordon has sold several dory replicas, has donated some to ALS Society fundraisers and has some orders to fill. There have been offers to buy the larger boats. But it’s not about money for Margo.

“I told Gordon I will never sell them. They will stay in the family,” she says with conviction.

Gordon’s creations will always be kept close at hand. And, they will always be ready to sail in the bathtub; any time Margo has the urge.


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Jack Kyte is a freelance writer and communications consultant living in New Glasgow.

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