A man from Steinbach wants to spread a message of hope for all those, like himself, who are living with encephalitis.

"There is hope," says Kevin Friesen. "Don't hole yourself up."

Thursday, February 22nd is World Encephalitis Day. Encephalitis is inflammation of the brain that can be caused by an infection or through the immune system attacking the brain. Friesen says though encephalitis can be developed through herpes or by a tick or mosquito bite, he developed his through an infection.

Friesen says he was first diagnosed with encephalitis in March of 2019. It was around that time that he was suffering from flu-like symptoms, including body aches and a headache. He also had hiccups that would not go away.

Friesen ended up working a shift and when he came home, he recalls feeling confused and tired and decided to take a nap. However, his wife Julie, realizing something was wrong decided to rush him to the hospital. Friesen recalls being triaged but says he has a lot of lapses in memory after that. 

Friesen spent the night in hospital at Bethesda Regional Health Centre and the next day was transferred to St. Boniface Hospital in Winnipeg. Eventually, he learned that he had viral meningitis and encephalitis.

"I remember the doctor telling me this could change your personality and it didn't make sense to me," he recalls.

Friesen was also told that he might lose his driver's license, which also did not sit well with him, as his work as a proctor for Southern Health-Sante Sud required him to drive a vehicle. 

Friesen was in hospital for about two weeks and shortly after arriving back home, more of the symptoms began to weigh him down. He recalls attending Summer In The City in downtown Steinbach and how sensitive he suddenly was to the busyness and the noise around him. That weekend, he also suffered an anxiety attack.

"I really thought I was dying," admits Friesen. "It felt like I had sparks coming out of my head, my hands and feet were tingling."

Friesen went back to the hospital and underwent more tests. He says it took a nurse sitting down with him in the middle of the night to let him know that his "illness" is something he would have to learn to deal with and that one of the symptoms is anxiety. 

The tingling hands and feet come every night and Friesen says it is something he has learned to live with. There is also a chance is it a side effect from his anti-seizure medication. Friesen's neurologist says eliminating this medication will almost certainly cause another seizure.

"And I don't want to play that game," he says. "I'd rather just live with the tingling hands and feet and the buzzing ears."

Other functions that are difficult for him to enjoy because of his condition include fireworks, sporting events and even just going to church and being around visiting people. He notes one place where he finds relief is at Coffee Culture in Steinbach, where he sits most mornings. The difference here is that Friesen says it feels like he is in control and can leave whenever he wants to. It is at Coffee Culture where Friesen pops in his earbuds and listens to quiet music while working on his photos. 

Photography is something that Friesen had a passion for but briefly lost after being diagnosed. Friesen says he lost the desire to snap photos until one day when a friend of his encouraged him to give it a try again. So, he grabbed his camera, headed down to the Seine River, and photographed the trickling water through freshly fallen snow. Suddenly, photography became part of his recovery journey. 

Friesen, who enjoys photographing horses, says the owners of Sandy Ridge Stables permitted him to take pictures at the stables anytime he wanted. 

"I've done that," he says. "It's been just another huge blessing; these animals are just amazing for mental health."

Friesen says he tries to get to the stables once a week, which has opened up doors to not only sell his photographs but to take part in stable connection therapy in Lorette. 

Friesen says he is so incredibly grateful for the support system he has. This includes his family and friends, his doctors and psychologist, and the brain trauma support group in Steinbach. He notes it is through the support group that he finds others he can relate with. 

"Because you feel pretty alone in the world sometimes," he admits. 

Yet, Friesen says his children have been really good and his wife has been his rock.

"I am so grateful that I have that support system because I know people don't have that," he adds. 

Friesen has since retired from work, which he says was not easy. He says he enjoyed his work as a proctor, finding it fulfilling to help others. But he says the work also gave him the advantage of knowing what people with mental illness need and then encouraging them in that way. Friesen says his work as a proctor has taught him the importance of structuring his mornings, which includes getting out of bed at a certain time, making breakfast for himself and his wife, feeding the cat, and taking a shower. Friesen makes a list on his phone and then checks off each task once completed. 

Friesen says it is also helpful when his wife sends him out grocery shopping or he pops by Coffee Culture. 

"Don't hole yourself up at home, that's a mistake, you can't do that," he says. "Don't just keep it within yourself, talk to people."

Friesen says it is possible for someone to fully recover from encephalitis, noting prompt treatment obviously helps. However, he says more often than not there is damage to the brain and in his case, he has long-term brain scarring on the right side. 

"I've come such a long way, I really have," says Friesen. "I still want to get further."

He notes what has been helpful for him is to keep a grateful journal but says part of the journey has also been to learn to live with his condition and try to figure out his new normal. 

"I think I'm close there," he says. "But it's taken me a long time to get where I think I know what the new normal is now."

Friesen would like to take the time on World Encephalitis Day to thank the staff at Bethesda Regional Health Centre in Steinbach. He says they were amazing and on the ball. His neurologist has told Friesen that if not for their prompt diagnosis, he could be learning how to walk and talk all over again or could even have died. 

"I know an individual that has passed away from encephalitis just partly because not getting the care quick enough," says Friesen. "So that is so critical to this."

Friesen says it is important to raise awareness on this day because the more people familiar with the condition, the better the chance that someone is treated as quickly as possible and lives to tell their story. 

Friesen encourages everyone to wear something red on World Encephalitis Day.

More on Friesen's story can be found here.