EASTON — Alexis Courneen was a 19-year-old only two weeks out of Coast Guard boot camp, serving on her first boat and embracing the challenges of military life like so many of her family before her, when her life inalterably changed.
She doesn’t recall the details of the accident that day in 1998, but she remembers raising her arm to protect her face an instant before a steel buoy struck her head. Nearly two decades later, she cannot read, has trouble seeing and hearing, and is plagued by fatigue and anxiety.
If the accident had occurred after Sept. 11, 2001, her husband, Jason, who has faithfully and patiently cared for Alexis since shortly after her debilitating injury, would have been eligible for an array of benefits available to the caregivers of veterans injured on active duty after the terrorist attacks.
Now, the couple are lobbying for those veterans benefits to be extended to all families caring for injured loved ones.
“We’ve seen what a lack of support looks like,” Jason said at his dining room table.
Under a bill being considered by Congress, veterans injured before 9/11 — and their caregivers — would be eligible for extra assistance such as child-care services, mental-health counseling, tuition assistance they can transfer within the family, and a monthly stipend of up to $2,600. The bill, sponsored by dozens of lawmakers from both parties, is currently in committee in both the House and Senate.
For the Courneens, the benefits would supplement the health coverage they already receive from the Department of Veterans Affairs.
Seated beside her husband, Alexis spoke haltingly of the obstacles she encounters every day, all while helping to raise two girls, ages 14 and 12.
She bumps into furniture because she has no depth perception. She has difficulty swallowing and breathing. She often becomes tired and sometimes drops to the floor or takes piggyback rides from Jason — “anything to keep out of the wheelchair,” Alexis said.
Crowds make her dizzy and anxious, even at low-stress school events she attends to support her children. Depression can be a problem. And Alexis does not cook when she is alone because she could not smell the smoke from a fire.
“The girls have had to grow up a little bit earlier,” said Alexis, who married Jason in 2003. “The worst of it is, they don’t know who I was before.”
Jason knows that woman, the teenager he dated while they attended high school in Newington, Conn. They drifted apart, but then got back together around the time Alexis received an honorable discharge from the Coast Guard in 2000, a time when she was having difficulty with memory and concentration.
Jason said the extent of her physical problems was not apparent at first, even though he knew something was wrong. Doctors suspected Alexis was suffering from multiple sclerosis, and the couple shuttled for years among eight to 10 medical specialists at the VA, Jason said.
The correct diagnosis did not come until eight years after the accident, when the Courneens visited a polytrauma specialist, Jason said. The physician asked him to review a list of symptoms of traumatic brain injury and tell him if they were familiar.
There they were: problems with anger, cognition, vision, hearing, depression, and light sensitivity, among others. When Jason read them on a computer screen, he began to cry. The symptoms described his wife.
“This is a very isolating injury,” Jason said. “It’s an invisible wound.”
Dan Stack, the Disabled American Veterans adjutant for Massachusetts, said that extending caregiver benefits to veterans who served before Sept. 11, 2001, is overdue.
“It’s been kind of discriminatory,” said Stack, an Air Force veteran. “When it comes to a veteran’s benefit, you cannot grant a benefit for one class of veterans and not for the other. This would put all veterans on equal footing.”
Jason visited Capitol Hill in November to press for passage, visiting Senator Elizabeth Warren and Representative Joseph Kennedy III, as well as the staff of Senator Edward Markey, all of whom have cosponsored the effort.
At first glance, Alexis’s disability is not apparent. At 39, she exudes a quiet confidence that masks her physical limitations. Despite the struggles, she is determined to live as normal a life as possible.
“I’m a tough cookie,” Alexis said with a smile. “I am always up for a challenge if somebody says you can’t do this.”
Still, her children cook their own breakfasts, and Jason attends some school conferences alone. The couple operate a marketing business from home that allows Jason to be near her.
“We hit a spot where we realized we were going to be in this forever,” Jason said of the injury. “We realized our 40s and 50s would not be like everybody else’s.”
Jason’s previous jobs, including one as a general contractor in Connecticut, gave him enough money to be comfortable and the flexibility to be with Alexis when needed. But many families who care for injured veterans — including those who fought in Vietnam, Korea, and World War II — do not have those advantages, he said.
In the meantime, the couple contend with the constant demands of an exhausting condition that restricts their lives, but in some ways enriches them.
The children learn from the example of their courageous mother. Alexis is comforted by a husband who is committed to her care. And Jason is bolstered by a wife who shows him what a true partnership can be.
“Alexis is my biggest cheerleader in everything I do,” Jason said. “Of everyone I’ve known in my life, Alexis is the most loyal, devoted, and supportive.”
Still, even the closest of relationships can be complicated by such an injury.
“It’s not a fairy tale over here. There are days when I don’t deal with it well, and she doesn’t deal with it well,” Jason said. “All these years later, you feel that frustration, and I have to realize Alexis is not making a choice.”
To help him cope, Jason said, he heeds the advice he once received from a therapist who warned that frustration will be inevitable.
Instead of getting angry at each other, the therapist said, get angry at the injury. It’s advice, hard-earned, that they work to share with others.
Brian MacQuarrie can be reached at firstname.lastname@example.org.