Kevin Jess stands firmly as the rock of his family. He lives to care for his first and only loves, Sheila and their children.
Sheila Jess has Huntington's Disease
. It's a cruel illness that isolates its victims. It's also rare enough that the medical field has very little answers.
Huntington's in itself is not fatal but the symptoms can cause death.
In simple terms, in Huntington's Disease brain cells commit suicide. Affecting the frontal lobe, victims appear to be drunk. For that reason many assume that sufferers are alcoholics. One characteristic of the disease is motor function - the gait of victims is much like an intoxicated persons.
Another issue is eating. Because of the loss of motor function each meal could be life-threatening. Victims choke on their food. As the disease progresses food has be prepared in liquid form, even the simple process of drinking water can be deadly.
Kevin Jess knows these symptoms too well. For the past 10 years he has watched the love of his life slowly get sicker. For the past two years Jess has had to be Sheila's full-time provider. He's not complaining, though, in fact he says that this time in his life has made him a better man.
"I don't miss my old life. I wasn't the nicest person. I was in management and I was good at it. But it changed who I was, I took the job with me. This illness has made me a nice person, honest and good to people. I once was mean spirited but I have become a better person. My wife likes me better now."
When you talk with Jess it's hard to imagine he was ever mean spirited. His kindness and devotion to his family rings out with each word. He is proud of each of his three children. His oldest daughter is grown and married. His middle child is 16 and at this time living with her older sister and then there's his youngest son, 10, who lives with Kevin and Sheila.
Huntington's Disease is hard on the kids. They miss out on what is considered a normal life. His older two children have memories of that. The youngest, however, does not.
"My youngest doesn't remember normal. He doesn't see our live as a normal one. He sees other families and knows what life 'should' be. It's very hard on him."
Caring for a family member that has a disease like Huntington's is not easy. Hearing that one you love say they hate you, which is par the course in neurodegenerative genetic disorders, is heartbreaking. Family members are often blamed for things that aren't their fault.
"I swallow my pride daily."
Suicides among victims are not uncommon. Jess knows this too well. His wife has attempted suicide twice.
Life wasn't always hard for the Jess family. Kevin owned a nightclub. They brought a new car every two years and took vacations every year. They were living the dream.
He said, "I owned a nightclub. We had everything. It's all gone now. I have no choice to to live on assistance, it's barely enough to get by. It doesn't matter.
I used to be very materialistic. Now I don't want that anymore. I want to look after my my family."
Kevin first saw Sheila when he was 12. From then on he knew she was the one. "I knew at 12 that she was going to be my wife. She was always the prettiest thing. A little Barbie doll. She was a little older and dated others but I have always been faithful to my heart."
Sheila fell in love with Kevin. They will be married 29 years in June.
These days Kevin is the one who puts on Sheila's makeup and does her hair. She can no longer do so herself.
"It's hard but not when you care about someone," Kevin admits.
Kevin says the hardest part is the lack of social support. In the past they were the family that hosted dinner parties.
"People avoid us. Friends have stopped coming over. I do miss that part of my old life."
The couple used to go out every Saturday night dancing. That is in the past but dancing is still a passion. Today the couple dance in their own living room.
Jess is a writer at Digital Journal
. He turned to writing as a way to do something productive while still being at home caring for his family.
"DJ is a release. I am doing something. I get a little pride out of writing my articles. It gives me a sense of doing something."
Jess is in the process of moving from a grand home to a smaller one with just one level. The move will make life easier for him and his family.
Some may think of the Jess story as a riches to rags tale but they would be wrong. Riches are in having love and devotion, a family and the courage to face hardships straight on. For that reason Kevin Jess is a very rich man and a hero to aspire to.