Johnson City Press: 'None of us are exactly just fine:' Local man talks about living with post viral encephalitis

'None of us are exactly just fine:' Local man talks about living with post viral encephalitis

Brandon Paykamian • Updated Dec 3, 2018 at 9:00 PM

At the age of 6, Newport native Shannon Stokely found out he had severe viral encephalitis, a rare viral infection that forms a rash and causes swelling on the brain, leaving many paralyzed or in a coma.

Now 41 and living in Johnson City, Stokely says he is “making strides in physically recovering” and working in the field of alternative “healing arts” as a Reiki master, auric worker and “master chakra worker.”

Last week, Stokely emailed the Johnson City Press to tell readers more about the challenges that come with living with post-viral encephalitis, which has left him largely nonverbal.

“The term nonverbal applies because I can make sounds and at times speak clearly, though those are rare occasions. Being nonverbal is hard to deal with,” he wrote. “Many people don't know that it's all right to engage me in conversation. I can type out my response on my Kindle Fire, then either have them read it or have the Kindle say it.”

While limited verbal communication is just one of the many challenges Stokely has had to work to overcome, including reduced use in both hands, he says his “mental sharpness has been compared to a katana blade.”

“Not bad for someone who, by all rights, should be dead or a vegetable,” he wrote.

But when Stokely was first hospitalized as a child with viral encephalitis, he said things looked grim.

“All your doctor can do is restrict the fluids and secretly hope like hell you die and don't have to be put into an institution. That is how bad I had it, but I was the first child to live through it and be mentally as sharp as ever,” he wrote. “I broke the mindset that a child couldn't be fully mentally intact and recover from it.”

Today, Stokely said he still vividly recalls what it was like being in the hospital in June 1984, when he was struggling to fight the virus that could have left him completely incapacitated for life.

Stokely said he fought stubbornly.

“After about five to seven days at the University of Tennessee hospital, I remember feeling spacey with the cluster of migraines and headaches that entire day and the day before. I was in a borderline coma. I heard the doctors tell my mom that I was losing ground and would probably be in a coma before the night was over and not to expect me to come out of it for three to eight weeks, if then,” he recalled. “I did go to sleep around 1 a.m., when they stopped pinching me. They wanted to get me to fight back. I did better than that, I threw a fit! I stiffened all the muscles in my body up and made a high pitched squeal, which set most the heart monitors off in the intensive care unit.

“I didn't go into a coma that night, or any other. By the next morning, I was responding a lot better when the nurse came in. From that point, the doctors just sat back in complete amazement as I ‘semi-recovered,’” he continued. “The list of things I wasn't supposed to be able to do was quickly trashed, and the doctors are still amazed that I've made it this far in my physical recovery.”

The next month after being hospitalized, Stokely embarked on his journey to recovery as he began to learn to walk again. It was then that Stokely said he began to reclaim his life after that traumatic night in the hospital.

“I took my first steps at UT on the 9th of July, 1984 — the night before I was released. My first words were spoken the 6th or 7th,” he wrote. “I can't recall if my dad visited me before or after the CAT scan. But the words were either, ‘Dad, get a damn grip’ or ‘Get me out of here.’

“When anger or fear are in play is when I can speak the clearest.”

These days, the former reflexologist said he continues to combat the effects of his post viral encephalitis “through tai chi, qi gong, kung fu, fencing and kendo,” as he works to take care of his mother, who has dementia.

Still, some days are more challenging than others.

“I only know of seven people who had it severely and lived and were not mentally affected in some way from it, but one has trouble walking and gripping things, another can't speak or walk without assistance, etc. None of us are exactly ‘just fine,’” he said. “Heck, my cousin had a much milder form of it, and he went from a straight A student to a C and D student. But still, I don't know if there is an instrument he can't play.”

Stokely remains optimistic the medical field will better understand how to treat and cure viral and post-viral encephalitis in the future. However, one of the biggest changes he said he hopes to see in the medical world is increased openness to allowing patients to choose more alternative and experimental treatments.

Stokely also hopes stem cell research will help doctors better understand how to cure and treat the condition. 

“I want to see more alternative therapies covered by insurances. The recent addition of acupuncture by both BlueCross and United Healthcare was a pleasant surprise, though I do wish they would include massage, reflexology, reiki, aromatherapy, etc, and conduct a few neural stem cell studies locally,” he wrote.

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