After years of not knowing whether he was carrying the gene that causes Huntington’s disease, Jake Dowell found out recently his prognosis is good. But the relentless disease is never far from his mind.
There’s a tremendous amount of liberty in learning that you’re probably not going to die anytime soon. There’s even more in learning that when you do eventually go, it won’t be from a disease will rob you of your mind and body before killing you.
If you’re Jake Dowell of the Rockford Ice Hogs, you take your triumphs where you can get them these days. And for Dowell, recently finding out that he is not carrying the gene for Huntington’s disease is indeed cause for celebration. To be sure, it will make Christmas this year, his first with five-month-old daughter Elizabeth, one to treasure.
But as always for Dowell, the joy will be tinged with sadness and tragedy. As he revels in the fact that the Huntington disease gene skipped him, his older brother, Lucas, is living out his final days in a care facility, slowly decaying from the same disease that took their father almost two years ago.
“He’s in the final stages of everything,” Dowell said of his brother. “He’s very much into the voices that are in his head. He’s just really quiet and he’s completely dependent on someone to care for him for everything.”
There is no cure for Huntington’s disease, at least not yet, so the prognosis for Lucas Dowell is grim. His organs are still working and he’s able to swallow food that is cut up and fed to him, but Jake Dowell knows the disease is progressing quickly.
“My dad was much more there mentally, so we debated for a while and he stayed alive a lot longer because we put a feeding tube in my dad and I don’t think we’re going to do that with my brother,” Dowell said. “He just doesn’t have the quality of life where he can even have a conversation with anybody and it was just so hard with my dad to decide when to take the feeding tube out and I don’t want to go through that again. I asked my mom if I need to come home over Christmas and the all-star break and she thought that he’s still eating, she thinks he would at least be able to make it through the hockey season and I’d be able to spend time with him in the summer. So I’m hoping for that, at least.”
The Dowell family’s plight was brought to light in 2011 when The Hockey News featured him on the cover. Dowell was a fourth-liner for the Chicago Blackhawks at the time and was dealing not only with the uncertainty he faced about his own future, but also the fact that both his father and brother were afflicted with Huntington’s, a rare genetic disorder in which nerve cells in the brain are irreparably damaged, causing various parts of the brain to deteriorate.
Here is a PDF version of the THN story on Dowell:
So while Dowell may be free of Huntington’s disease in a physical sense, it never, ever really leaves him and probably never will. But gone are the days when a simple muscle twitch would have him wondering whether or not he was carrying the gene. For years and years, the disease has played games in his head and it finally got to the point where he had to know what his future was going to be. The fact that the uncertainty has been removed has given Dowell a new lease on life. In many ways, even though he’s 30 years old and has played 562 pro games – 157 in the NHL – Dowell feels the optimism of a rookie these days.
“To be totally honest, I just assumed I had it because I wanted to be prepared for the worst,” Dowell said. “There are certain things you do where your mind can play tricks and make you think…but now I look back laugh. I said to my wife, ‘Now that I know I’m not sick, I was just doing something dumb.’ But I do feel so much lighter. Now, I can stop overanalyzing everything.”
How that will translate to hockey is the next question to be answered. Will skating with less of a personal burden make Dowell a better hockey player? He hopes so. After playing out his contract in the Montreal Canadiens system last season, Dowell went to Rockford on a tryout and not only made the team, but is tied for the lead in scoring on a Rockford team that is in first place in the AHL’s Central Division and second place in the Western Conference.
“I’ve been pretty focused this year and I’m having a pretty good year,” Dowell said. “And I want to be able just focus on that and try to get myself to where I want to be and that’s the NHL. So now that can be my main focus.”
The first cardinal rule in sports journalism is that there is no cheering allowed in the press box. But we’re cheering for Jake Dowell to get back to the NHL. Loudly. There are few players who deserve it more.