If you’ve ever worked a bluegrass festival, as a volunteer or on staff, you know how much work is involved. There are many hours of pre-planning to be done in the months before the event, and a flurry of activity leading up to the festival itself – which is another whirlwind all its own.
Can you imagine dealing with all that while coping with a debilitating disease? That would take a truly heroic effort.
But that’s just what Candi Sawyer has done this past dozen years, running the popular Jenny Brook festival in Vermont. Just a year after the festival’s launch in 2001, she received a diagnosis of Multiple Sclerosis, but her dedication to keep the event going has never wavered. This weekend she will manage the 12th successive festival at the Tunbridge Fairgrounds in Tunbridge, VT.
We caught up with Candi recently to talk about the evolution of the festival, and how her battle with MS has affected her ability to keep up with all the details. Like so many bluegrass lovers, she says that her family’s involvement when she was a girl is what lit the fire.
“Jenny Brook started in 2001 at the Weston Recreation Area in Weston, Vermont.
My grandfather produced shows at the Weston Playhouse for over 25 years. I was only 15 when he started them and I learned a lot from him. He was getting ready to switch the bands the year before his 20th Anniversary and a sponsor, David Johnson, asked me why he never promoted an actual bluegrass festival. He told David he did try back in 1979, but the town wouldn’t let him.
David then asked me if I was interested in him helping me financially to get one started. The rest is history.”
Sawyer said they needed David’s help the first three years, but were afterwards able to repay him for startup capital from festival proceeds, and have been on their own ever since.
And as though starting and running a bluegrass festival wasn’t hard enough, Candi says that giving up was never an option when MS complicated her life.
“I was performing at the Mineral Springs Bluegrass Festival in Connecticut a couple of weeks after our festival in 2002, and I went down. At the time the doctors didn’t know what was wrong, but in November the diagnosis was Multiple Sclerosis.
I did not give up when I was diagnosed, that wasn’t an option. I was only 34 and had a wonderful husband and two sons (6 and 4) that needed me. With the support of my family and bluegrass friends I continue to get moving every day even when it feels impossible. My Bluegrass Family, spearheaded by Herman McGee, put together a concert series called Pickin’ for Candi that included concerts in the northeast to raise money so I could have holistic treatment that wasn’t covered by our health insurance. Medical doctors didn’t think I would walk again but with this treatment it proved them wrong.
In just a few months I was walking with only a cane and eventually without any assistance at all. Of course it couldn’t cure the MS, but I feel that it slowed down the progression. At times I’m back in the wheelchair again, but it doesn’t seem to last as long.”
Candi is also a picker, and when the disease hit, there was the fear that she might never be able to play again.
“I used to play guitar but the year before I met my husband, I lost the use of my left index finger. I was at a jam and went to go to the C chord, and my finger just flopped over. I ended up having surgery because they felt it was an ulnar nerve entrapment but they never found it.
It eventually came back so years later when I was diagnosed they felt that was part of the MS. I didn’t want to quit playing back then so I learned how to play the bass. I can still play the guitar but don’t normally do that on stage.
I play bass now with The Seth Sawyer Band.”
Like so many successful festivals, Jenny Brook soon outgrew their space in Weston. But it was just another hurdle for a determined problem-solver to overcome.
“It was heartbreaking because I thought it was over, but luckily we found our new home on the historical grounds of the Tunbridge World’s Fairgrounds in Tunbridge, VT. It ended up being the best thing that ever happened to the festival. We have more than enough room and it has grown a lot since we relocated.
The staff at the fairgrounds actually makes it easier for me to manage the event. I love it when things turn out this way!”
We asked Sawyer to explain a bit about her condition for those unfamiliar with the disease, and she responded that running the festival has been the ideal therapy.
“MS is a chronic disease that involves an immune system attack against the brain, spinal cord and optic nerves. I have lost the use of my legs and eye sight and so far they have come back. Eventually the more the myelin is scarred this won’t be the case. I have pain that is sometimes severe.
The worst thing about having MS is that you never know what to expect. I always have some form of pain and numbness but what is most annoying is not knowing which flare-up is coming next. Some days it’s difficult to walk, see, swallow etc. You just never know.
One thing that I do know is that I always make sure to work on the festival every day no matter what is going on. That is what keeps me going. People have suggested I get committees to take care of things but that isn’t an option. I consider the festival that best medicine in the world. It gives me something to focus on. I may have to rearrange my schedule from time to time but I always get it done. It’s important for me to have something to focus on.
I can’t drive anymore, so when it’s time to put up flyers or go shopping for supplies I have to depend on others. Luckily I have a very supportive husband. He was forced to quit his job and stay home to take care of me and the kids.
I have a very positive attitude and even though at times it can be very frustrating, so far I haven’t let MS take the festival away from me. I work really hard every day to make the festival the best it can be. When the time comes that MS wins and I can no longer manage the festival, I want bands and fans to remember it as a great festival.
I want the people I work with to put on the festival and the fans that support it to see me as a strong person who has obstacles that get in the way at times but who never lets them stop her. I’ve had several people through the years tell me that I help them to keep going. Some of these people were fighting cancer, one of them had lost his legs, and some are dealing with every day aches and pains. I feel this is why God gave me MS, he wants me to help give others strength.”