GREENSBORO, N.C. — Alex and Liz James’ romance blossomed while working at IBM.
“She had just gotten back from some adventure and had taken a receptionist position. I came in after three weeks of sales training, so my confidence was up, and I asked her out,” laughed Alex.
The two married, had twin boys, Will and Matt, but life since those early days isn’t exactly what they had in mind.
Liz started having some weird symptoms, visual problems, balance issues. Doctors diagnosed her with multiple sclerosis. A few years later, another shocker. A double whammy. Both boys were diagnosed with muscular dystrophy. The diseases for all three of them are progressive, which mean they just get worse.
“I was in the tub not too long after the boys’ diagnosis and I just sat there kind of chuckling to myself about the absurdity of the situation, of three of us having such severe problems. I knew I was all in and I just decided then and there I would do the best I could and not with clenched fists and teeth, I would relax and do all I could,” remembers Alex.
Alex went to Harvard and played in a European basketball league before he worked for IBM. After the diagnoses, he quit his job and went back to school at UNC for occupational therapy so he could become a full-time caregiver. And that’s exactly what he is.
Will and Matt are now 25 years old and are on ventilators. Liz has lost almost all of her speech. All three are either bedridden or use a wheelchair. But this isn’t a story about disease and what it has done to a family, but about a family with enormous challenges who has created a life with so much love, joy and fun, in spite of them.
Other than the medicines and respirators and nurses in and out, the house has such a sense of normalcy. It’s full of art and wrestling posters and pictures. Alex tries to get the crew out and about at least three to four times a week. The twins love pro wrestling and pretty ladies. The family doesn’t miss a UNCG basketball game. At night, they gather in the living room and listen to music, mostly rock and 70s classics. There are many laughs and smiles.
“I do this for the people I love, it’s just normal now. And I have so much help. We have a nurse 16 hours a day because of Matt’s medical issues. We have so many friends that pop in and pitch in with meals for me and to go on our jaunts with us for the boys. We had an expectation of what our life would be like and this isn’t it, but there is still room for plenty of joy,” said Alex.
A family friend created a documentary about the family called “House of Love: The James Family Film Project.” There is a private showing at the Carolina Theatre this Friday.