James Rhodes says the story behind his physical challenges began 24 years ago, when he worked in the Air Force as a refueling specialist.
During a recent stroll through the Alaska Botanical Garden, James and Brenda Rhodes enjoyed a rare moment of tranquility.
They got married in the garden, and it’s also where Rhodes gets inspiration for his photography hobby.
But it’s been getting more difficult to do what he loves.
Rhodes suffers from hand spasms, bad knees and neurological issues, which he links to his Air Force service.
“We used this fuel called JP4,” Rhodes said. “I found out it contains benzene, hexane gas and also has kerosene. While I'm fixing the lines and repairing them, the fuel is just pouring out all over me.”
Studies show exposure to such chemicals can cause long-lasting neurological harm.
“I had no clue what I was doing was as dangerous as it was,” Rhodes said.
The problems began shortly after leaving the military, Rhodes said. First came the hand twitches.
“By 1996, just that tremor was full-blown to where it is as you see me today,” he said.
That’s when his 20-year battle began -- with VA clinics in Louisiana, Texas and Alaska. He said he was consistently misdiagnosed.
“(Doctors said) all of my symptoms were obviously psychogenic and if I just calmed down and learned to control my anxiety, everything would be just fine,” Rhodes said.
He waited more than a year for the Anchorage VA to treat him.
“The whole 13 months I was on the wait list they said I was only on for three months,” Rhodes said. “My math is September 2012, I went in; October 2013, I got a primary care doctor.”
Samuel Hudson with the Alaska VA declined to speak about Rhodes’ case, citing the VA’s privacy policies, but did point to a recent national audit that shows Alaska’s clinics have among the lowest wait times in the country. It shows 99 percent of appointments were scheduled within a month.
Hudson says less than a dozen people are on the Alaska VA’s wait list.
“The number today is 11, and those are new veterans that are just waiting to receive a phone call,” Hudson said. “We don't have a phantom wait list, nor have we ever had one.”
The VA did eventually send Rhodes to see a doctor at Providence, but he said the VA has denied his doctor’s referrals to specialists.
“Numerous calls to them and I shall quote them, 'Mr Rhodes, you do not need to see a hand specialist. I know what you need. I'm going to send you back to the orthopedic. The only thing wrong with your hands is the carpal tunnel. Everything else is anxiety. We just need you to stay calm’,” Rhodes said.
Documents show the VA denies his neurological problems are related to his time in the military.
But Rhodes and his wife believe the stutters, shakes and seizures are a direct result of Rhodes’ contact with jet fuel.
“The work I did and breathing in that fuel every day has caused me now to lose everything,” Rhodes said. “My dignity, it's caused me to lose the ability to provide for me, provide for my wife, her kids, do anything. I've gotten to the point where sometimes I need to ask for help to get out the front door: ‘Can you open this door for me? I need to leave.’”
“With life in general, it's been hard,” Brenda Rhodes said.