Sometimes, the pain is so unbearable that U.S. Navy veteran Lt. Susan Machuga is bedridden, unable to put on her own socks, much less walk to the bathroom of her Kingsport home.
Other days, the pain subsides and Susan can walk, play with her two children and help her family operate their two small businesses, Immersed Scuba in Johnson City and Ocean Quest Mini Golf in Kingsport.
Susan, who served as a nurse at the naval hospital at Guantanamo Bay, has a rare condition called arachnoiditis, a spinal cord condition that causes extreme pain and sporadically renders her unable to walk.
Since December, Susan started counting the number of days she can’t get out of bed, and so far, that number has reached 42.
While that unpredictability could drive anyone mad, Susan persists through each day with a crucial constant: a caregiver who also happens to be her husband, Zachary Machuga, a fellow U.S. Navy veteran.
Regardless of the day or how she might be feeling, Susan always counts on having Zachary by her side.
Together, the couple receives medical care and counseling through the Mountain Home VA’s Caregiver Support program.
“We're together almost 24/7. It's been one of those experiences. They say when you love someone, you make sacrifices for them and don't think anything of it,” Zachary said.
Susan first injured her back while working in the labor and delivery unit at Naval Medical Center Portsmouth in Virginia.
(Her patient’s) baby's heart rate dropped and she hit the call button. Nobody came so she moved a larger female patient that was in labor by herself and herniated her disk. But the baby survived so she said it was worth it,” Zachary said.
A few years later, working at the Guantanamo Bay hospital where she eventually met Zachary, Susan’s back started acting up again.
She was eventually medically evacuated off the island and endured a spinal surgery. Doctors finally declared Susan permanently retired in 2007, but Zachary still had 2.5 years of active duty remaining, where he, Susan and their firstborn were stationed at Camp Lejeune.
“She was in the VA system there in Fayetteville, North Carolina, and it was like she was just a number. You'd walk in and they'd just say, 'What's your social?' It just wasn't very good patient care,” Zachary said.
“So we kept seeing different specialists, neuroscientists (and) neurosurgeons, to try to figure out what was going on. There is no cure for her condition so she started doing research and found an online forum for other people with her condition. A lot of people were saying higher elevation seemed to help.”
During the same time, Zachary said he began developing depression due to the stress involved with working full time while trying to take care of his wife and their first-born.
“The stress of caregiving is different than a lot of people realize. You're seeing your loved one in pain and there's nothing you can do about it. It's really hard. Then taking care of a family, it's just emotionally draining,” Zachary said.
Once out of the military, Zachary and Susan settled on moving to Middle Tennessee because of its high elevation, and its VA Medical Center, where Zachary first learned about the Caregiver Support program.
“We had been in the VA system for 2.5 years, and not a single person told us about it,” Zachary said. “It’s one of those things we didn’t even know existed until we moved here.”
Living in Middle Tennessee only lasted a year before the couple moved to upstate New York for a brief period.
“We were both miserable and missed Tennessee so much. It just felt like home,” said Zachary, who is originally from Pennsylvania.
“We came to this side of the state a couple of times and heard great things about Mountain Home VA. We came (to East Tennessee) one weekend, and before we went back up north, we bought a house in Kingsport.”
As one of the few males in the program, Zachary praised the local Mountain Home VA’s Caregiver program for its support system.
“So the program allows you to talk to other caregivers and talk about what they're going through,” Zachary said.
“Going and hearing other people go through the same stuff, you felt like you're not alone. The stress of not being able to work a regular job because I never know what's going on. Not only the regular job side, but the emotional stress of everything,” he continued.
“Hearing people's stories about PTSD and spouses that won't leave the house, I was like, 'Oh my gosh, I'm just so thankful that she is able to leave the house, and able to function normally.’ I hate to use that word, but you know what I mean? She's not so paranoid that she can't function. It's just a physical disability.”
As a veteran himself, Zachary already had access to mental health counseling, but he said for those non-veteran caregivers, the program provides immense value.
“There's such a stigma with mental health, and that's one of the things the caregiver program teaches is: If you can't take care of yourself, you can't care for other people,” Zachary said.
Even if you don’t qualify for the program, Zachary urges anyone who serves as a caregiver to reach out and talk to others going through similar experiences.
“Doing it on your own and thinking your alone is the worst feeling in the world, but realizing there are other caregivers going through similar situations, you can learn from each other. It’s great,” he said.
“If you can get help from the VA, just the emotional support to talk to somebody is worth it. And if you don't qualify, there are other caregiver support hotlines available. I felt like the VA has been a huge blessing for us."
For more information about resources available to veterans' caregivers, call Amanda Arwood, Support Services for Veterans Families Outreach Coordinator, Volunteers of America, at 423-461-0044.