Facing ALS, Concord High Principal Gene Connolly stays upbeat
Prinicipal Gene Connolly in his office at Concord High School.
Principal Gene Connolly in his office at Concord High School.
Gene Connolly still greets visitors to Concord High School with a smile and a handshake, and his eyes still widen when he talks about the start of a new school year.
Connolly, Concord High School’s longtime principal, was diagnosed in July with amyotrophic lateral sclerosis, or ALS. Connolly still says he lives a charmed life, and he carries this mindset into battle against a debilitating and deadly neurogenerative disease.
“I would like you to put in there that I haven’t spent one second feeling sorry for myself,” he said Thursday. “I don’t want any sympathy. I want to do my job and negotiate what I’m dealing with, but I don’t want anybody to lower the bar for me. I want everybody to have high expectations for this school and for me.”
In his first public comments since his diagnosis, Connolly talked candidly about the disease he continues learning about, the overwhelming response from the community and the upcoming school year.
In early May, Connolly noticed he was having trouble pronouncing words clearly. The slurring became more pronounced, and for the first time in his tenure, he kept his remarks brief at graduation.
A Concord neurologist diagnosed him with ALS weeks later. “The day I got the diagnosis, I never in a million years thought that was going to be it. Up until that day I thought I had asthma or allergies or some other affliction,” he said. “It was an out of body experience. You think the doctor is talking about someone else. You think you’re going to roll over and wake up.”
A week later, on July 28, a second neurologist in Massachusetts confirmed that Connolly had ALS, which has no cure. “It was a very different feeling. It was a week later and I was in a very different place,” he said.
He has attended speech therapy since the diagnosis and takes two daily doses of Riluzole, one of the few drugs that have proven to be effective in delaying the disease’s effects. A follow-up visit is slated for late September at Massachusetts General Hospital in Boston.
“I’m not going down there thinking they are going to cure me, but if they can extend my life, that is wonderful,” he said. Connolly has kept his routine as normal as possible. He jogs often and takes guitar lessons, in addition to working full days. “I didn’t do anything to get it, and there’s nothing I can do to end it,” he said.
He has relied heavily on his “two families” for support, he said. “I have one at home and I have one here. I am very fortunate.”
Connolly has revisited many of his fondest memories from his 35-year career in the weeks since his diagnosis, he said. Staff members have sent notes, and students and colleagues from three decades have called, dropped in or mailed Connolly words of support.
“It’s funny what people remember,” he said. “They generally don’t remember the tough times, but they remember the good times. Sitting down and telling stories and reliving them and laughing – that has been so much fun.”
Finding himself on the receiving end of these kind words is an adjustment, he said.
“I tend to be a private person. It’s hard for me. I sometimes feel a little uncomfortable, but it’s not about me,” he said. “There is something that hits home when people see somebody they know suddenly dealing with this horrible disease. I think it’s natural people personalize it or put themselves in it. I remind them I’m going to be around here for a while, and I’m feeling good. Don’t feel bad for me.”
Connolly’s situation has made tighter an already close-knit family that includes his wife, Patty, and his two children, Jimmy, 27, and Allison, 26. Allison has decided to bump her wedding date to October because she wants to have a first dance with her dad. “We’ve been spending a lot of time together, talking about the future,” he said. “It’s hard to explain to you. I’ve been married for 34 years, and I didn’t think it was supposed to be like this, and it’s hard for me to put into words what that feels like.
“We’re making a concerted effort to make every day the best day and appreciate all the little things.”
Back to school
One of the first questions Connolly asked his neurologist was whether he could return to work. The answer was yes.
Connolly announced he had ALS in a July 30 letter to the school community. “People were coming to me and saying, ‘Are you all right,’ ” he said. “I felt strongly that I owed people an explanation. Without it, you know, people would have continued to ask questions. Once I get it out there, it’s out there, and I can focus on doing my job.”
Connolly admits he is in an unfamiliar – and at times uncomfortable – position. “I think the school year will start, there will be a little bit of, ‘There’s Mr. Connolly. Now we understand his speech has changed.’ But I think after a week of school we’re just going to go about our business. That is my hope.”
As a public figure, Connolly has embraced the chance to help raise awareness and money for ALS research. He has only one caveat.
“I absolutely have reservations about doing it during the school year. We have a mandate here, a huge responsibility to educate,” he said.
The responsibility to educate continues when students arrive this week. Connolly, who said he never took his life for granted, plans to approach the school year at a different pace.
“I used to look forward to the weekend, like most people do. I don’t really care about that now. Today is Thursday, and I am going to have a great Thursday. I’m not looking ahead to Friday,” he said. “I still look forward to things, but I’m not in a hurry for things to happen.”
(Iain Wilson can be reached at 369-3313 or firstname.lastname@example.org or on Twitter @iainwilsoncm)