Despite challenges, Alex James maintains a happy home

Jan. 27, 2013 @ 01:00 AM

A cursory glance at Alex James and family says much about his life, and yet it says so little.
We see 54-year-old Alex — tall, lean and ever smiling — surrounded by wheelchairs.
We see Liz, his wife of nearly 28 years, crippled by multiple sclerosis and unable to speak anymore. She’s been on a gradual downward spiral since being diagnosed in 1991, but the disease has taken a particularly debilitating toll since 2007.
We see their 22-year-old sons, Will and Matt, twins who were diagnosed with muscular dystrophy when they were 3 years old — only two years after Liz was diagnosed. Neither of the boys is expected to live much past the age of 30.
All three of them — Liz, Will and Matt — require feeding tubes. Matt, who is autistic, also has a ventilator to help him breathe. The family lives in Greensboro, in a modest home built specifically to accommodate a family living with disabilities.
Alex, the primary caregiver for his wife and sons, clearly did not envision this life for himself when he was growing up in Thomasville during the 1960s and ’70s. A brilliant student and gifted basketball star at Westchester Country Day School — where he was recently inducted into the school’s Athletic Hall of Fame — he went on to earn a degree from Harvard University, where he also lettered in basketball, and landed a promising job with IBM. Two weeks after starting the job, he met Liz, and they married in 1985.
Life seemed idyllic, and Alex could not have predicted what his life would look like today. But today, you will not hear him complain. Not today.
“It looks tragic from the outside,” Alex says softly, “but it’s not as hard as people might think. Yes, it’s a tragedy that this would happen to all these people in one family, and it looks real challenging. But from the inside, there’s plenty of room for joy.”
And there is joy. The reminders are everywhere, from the constant smile on Liz’s expressive face to the green rubber bracelet on Alex’s right wrist. The bracelet, part of a fundraiser for the Muscular Dystrophy Association, reads “I love Matt and Will.”
It’s more obvious, though, in the way Alex cares for and interacts with his family: Patiently reading Liz’s lips as she tries to express a thought to him. Gently encouraging Matt to smile for a photo Matt’s not sure he wants to be in anyway. Assisting Will when he needs to go to the bathroom.
“Yeah, this isn’t what I planned, but it’s clear what needs to be done, and so I’m gonna do that,” Alex explains.
“I get up every morning and their needs are right there in front of me, and these are the people I care about more than anyone in the world, so this is what I’m gonna do today, and it’s the right thing to do. And that’s kind of rare. People comment when they spend time with us that they can sense the love between us, and that we really do have a happy home.”
That first statement — “It’s clear what needs to be done, and so I’m gonna do that” — defines much of Alex’s adult life.
When the boys were diagnosed with muscular dystrophy, for example, he quit his job at IBM and went back to school to study occupational therapy, which he had read would be beneficial for his sons.
“That’s the kind of guy Alex is,” says Kim Setliff, who knew Alex at Westchester and remains friends with him today. “He’s an inspiration to me and to lots of people.”
After earning his degree in occupational therapy, Alex secured a job at Gateway Education Center, working with students who have severe mental and/or physical disabilities.
When the boys reached middle-school age, and Alex and Liz didn’t think the school system’s curriculum for the boys would be beneficial, Alex quit his job at Gateway and home-schooled his sons.
“It’s been more like home-fun, really,” Alex says, explaining that he mostly just spends time with his sons, teaching them what he can and loving them while he can.
He gets home-health assistance during the day — pretty much a necessity, considering he’s caring for three people with challenging disabilities — but he chooses to tackle evenings on his own.
“I think if you have somebody around all the time, it’s hard to have an intimate family time,” Alex explains.
The family lives primarily off of Liz’s disability insurance.
They also receive help from the “JoyFriends,” a network of friends and acquaintances who since 1998 have been providing meals and assisting with other needs. Church members raised money to help purchase a handicap-accessible van.
“We get to see people at their best,” Alex says. “It’s really uplifting to have so many folks trying to help you out.”
Spend a little time in the James household, though, and talk to a few people who know them well, and you’ll begin to believe Alex and his family are the ones who are doing the lifting, rather than the ones being lifted.

jtomlin@hpe.com | 888-3579