An Uncertain Future

by: Joan Hitz

At twenty years of age, Eric Ryan (accidentally) drove his 275-pound motorized wheelchair off a cliff in Costa Rica. But before rolling on with this story, let’s back up a bit.

To infancy.

In 1988, when Corey Ryan was three months old, a thigh muscle biopsy yielded a grave diagnosis, also assigned to his identical twin Eric: congenital muscular dystrophy.

Kathy and Larry Ryan were devastated. For two months they’d tried to ignore their uneasiness about the babies’ sluggish movements, hoping that their premature birth was the cause. 

But like a crushing boulder the diagnosis arrived--definite, immovable--and without a crystal ball. Except for stating that the babies wouldn’t walk, and might not even survive, doctors could predict nothing about the future. The only certainty was ... uncertainty.

Mourning moved in, eclipsing what should have been a joyful time. The Ryans grieved for everything they’d wished for their sons: a happy childhood, and, twenty years into the future--girlfriends, college, careers.

Hovering over everything was the omnipresent awareness the twins might not even live.

So the Ryans embarked on a journey. For answers. For hope. For certainty. 

But specialist after specialist, test after test, the diagnosis remained unchanged. And the prognosis remained ... uncertain.  

Finally, exhaustion produced a cure the Ryans hadn’t even known existed. It wasn’t life-saving, but it was profoundly life-changing.

Says Kathy: “One day, we simply decided to quit the constant agonizing. It interfered with enjoying the boys. We couldn’t know their future--it was uncertain. But the fear and worrying certainly were crippling us now.” 

So the unnecessary appointments were cancelled and the Ryans determined their own prognosis: Normal Family Life. 

The boys, tiny firebrands whose weak muscles were suffused with an excess of healthy spirit, obliged. In their own time they learned to sit up, wriggle legs, wave arms. 

And, says Kathy wryly, “they learned to use their mouths.” 

The house overflowed with the non-stop mystery-language specific to twins. At dinner, the boys spouted secret syllables to each other, then burst into knowing laughter.   When they finally enrolled in the study of English, they attained a verbal facility that seemed fitting compensation for legs which refused to walk. 

Corey and Eric’s words walked--ran--to every corner of the house.

“They cracked jokes constantly,” says Larry. “And their humor was ‘out there,’ too. They were real characters.”

When it came time, the boys used 275-pound motorized wheelchairs to power themselves through a childhood crammed with the same broken arms, broken toys and begrudging homework as “normal” kids.

Add in: dogs, chores, adaptive karate, wheelchair basketball, and pickup football with older brother Sean. (Sometimes Sean had to pick them up.).

Also: spinal surgeries, leg braces, therapy, and, every obstacle in a world designed for the walking. 

The house’s doorways were widened, but chipped doorframes offer proof that eight-year-old speed demons once passed through. 

There were other barriers. With muscular dystrophy you don’t just “hop in the car.” Your parents lift you into your wheelchair, then you use the back door ramp, hydraulic lift and van tie-downs to secure the wheelchairs in case of traffic accident. 

Every single trip. 

When mom Kathy says you do what you have to do, it isn’t to answer a sports reporter’s question about carrying oblong balls down 100-yard fields. It’s because she does ... what she has ... to do. It’s normal--these are her sons.

Eventually the twins discovered girls, attained the legal drinking age, and ... Corey acquired a tattoo. 

It says: Until We Meet Again. 

“Dad didn’t want me to,” says Corey, “But I waited till eighteen.” 

The tattoo honors the memory of a close friend.

Last year, the Ryans continued to practice non-worrying: they allowed the twins to fly to Costa Rica with a friend. At the outdoor hotel lounge, Eric mistook a ledge for a continuation of highly polished floor and drove off it.

Only one witness was bold, or inebriated enough, to help.

“Tell me how to hold ya and I’ll pick ya up, little dude,” intoned a towering drunken Texan.

“Cradle me, like a baby,” counseled Eric (to ensure being rescued in one piece).

Next day, the (sober)Texan walked by, spotted Eric and squinted. 

“Dew Ayh know yew?” he drawled.

Stories like these allow the Ryans to lose sleep while never regretting a minute of letting their boys go. Boys who were once three months old and diagnosed with an uncertain future.

The message? Sometimes, wheelchairs fall off cliffs and all is well. Sometimes, it just takes a drunken Texan to get things rolling again. 

Or, a brave decision by young parents.

Ten days ago the “boys” graduated from Briarcliff College with accounting degrees. They’re going to open their own firm.

Look out, Uncle Sam.

(first published on August 31, 2011, in South Bay's Neighbor News)