Two years ago, Erin Spineto sailed into the Florida Keys, tied her boat to the dock and headed into the Fiesta Key RV Resort restaurant. She wanted a burger and a Coke to regain the energy depleted during her 100-mile journey from Key Largo to Key West as captain of her own ship.
“Did everybody leave you to tie up the boat?” a local dockworker asked.
“Nope,” the athletic blonde said with a smile, “it’s just me.”
As she reflects back on the exchange today, Spineto admits she could have invented a much more dramatic story, but the town folks she met along the way were so friendly that she didn’t want to put one over on them. In fact, the six people who were in the restaurant enjoying a meal when she arrived had become friends by the time she’d left.
The purpose of her trip to the area was to show what people living with diabetes could do; she was traveling solo even though a doctor once told her never to sail alone because of her type 1 diabetes. The condition accounts for 5 to 10 percent of all cases in the United States and develops because the body makes too little insulin. Type 1 appears to have a genetic component that science has yet to identify.
Spineto was 19 and a college sophomore when she was first diagnosed. She realized something was wrong as she biked home one evening and felt extraordinarily tired. As she sat on the curb to rest, she became slightly delusional. Later, she went to her family doctor for a checkup, where her mother insisted on blood work.
“My mom told the doctor: ‘You know, she’s been losing weight,’ “and then she listed some of Spineto’s symptoms that even the sailor herself hadn’t noticed, “I was tired a lot and drinking water like it was going out of style. It was crazy for me because I didn’t really like water.”
When the blood work came back three days later, Spineto got a call at school saying she had type 1 diabetes.
“I thought: Okay, great. No problem. You just shoot up with insulin, and it’s no big deal.” But it wasn’t so simple. At one of her first doctor’s appointments, they told her there were a number of things she could no longer do. They said that she couldn’t drive a big rig anymore, which she didn’t mind. But when they told her she couldn’t sail alone or fly a plane solo she thought: That was not okay.
Spineto grew up near Huntington Beach, CA, with a passion for water sports. She became a surfer at 5, and her grandfather took her sailing when she was 8; she became passionate about both sports. Drifting out to sea meant getting away from the problems of every day life and concentrating on the simple things.
When she went to college, however, she left sailing behind. Then a few years after graduation, when Spineto married her husband, Tony, and they had two children, surfing also took a backseat to her new life. Besides, Southern California waters had become as crowded as its freeways, which made it easier to give up catching waves to chase toddlers.
Putting all of her energy into her family not only shifted her focus away from water sports, it also took her attention away from managing her diabetes. Ignoring her condition became a problem, especially as she began to get older. “It slowly wears you down,” she said. “As a kid you don’t realize that diabetes is for the rest of your life. It’s every single day. There’s no vacation. It’s with you until you die.”
Determined not to let the disease get the best of her, Spineto made up her mind to rally.
She attended a Taking Control of Your Diabetes conference, and met people in a group called Insulindependence. “I really didn’t want a support group of people who were just going to sit around and cry about it. That’s not my style. These guys were young, and their whole point was: You learn to take care of diabetes through adventure and experiential knowledge. At that time, I felt I needed to have something that would give me that sense of achievement that I lost when I became so focused on the kids.”
The Spineto family is about living life with purpose. In addition to water activities, Erin runs races and triathlons, and hiked the Grand Canyon rim to river to rim in one day, while her husband, Tony—profiled in the April/May 2013 issue of ABILITY. They both use their sporting adventures to raise awareness around clubfoot and diabetes. So when Spineto thought about how to gain better control of her life, she remembered being an 8-year-old girl with her grandpa out on the water. She knew that she wanted bigger things for herself, and a better way to demonstrate to others the powers they have to steer their own course in life.
Spineto thought about the adventures she could embark upon to test her abilities. Her greatest quest to date, however, involved a tremendous effort, along with a leap of faith.
She rekindled thoughts of when her doctor first told her that she had to stop sailing by herself, and set out to prove that he’d grossly underestimated her capabilities.
“It was always in the back of my mind that I had to go out and sail alone just to prove that it was okay and safe. You can manage it, if you plan well,” Spineto said. Still, she had a lot of logistics to sort out.
Erin Spineto planned the 100-mile sail through the Florida Keys—between Key Largo and Key West—mostly owing to the warm weather, and also because the trip created an end-to-end journey, sailing from one destination to a finishing point.
“When you get to the end of the Florida Keys, you’re actually at the end of something,” Spineto said. “It wasn’t like you were going until you decided to quit. So this was great for me. There was something I could achieve if I could make it all the way.”
Some hiccups delayed Spineto’s plans for a year and a half: She was diagnosed with hypothyroidism, which relegated her to taking the kids to school and then flopping on the couch the rest of the day. Though her low energy proved to be a blow to her trip timeline, it also allowed her to hone her itinerary.
She circled February 2011 on her calendar to set sail. Her biggest challenge was funding, so she sent out sponsorship packets and found investors. A swim shop outfitted her with bathing suits, gear and backpacks, while Key Lime Sailing Club in Key Largo supplied the boat. Paul Keever, the owner and operator of the cottages there, had a grandmother with diabetes, so he felt an emotional investment in Spineto’s journey.
“We had sent out an email message advertising a Key Largo to Key West trip with the Key Lime Sailing Club, and Erin responded that she would like to do it and asked if we could help her out,” Keever said. His team set up a boat specifically for Spineto, knowing she would be on the water for several long days. At night, she docked at different ports.
“We spent a lot of time making sure the boat was prepped and ready with everything she wanted,” Keever said. “We replaced the normal lights with LED lights so she’d have good battery time. We put a solar panel on there. We did specific things so she would have a safe, comfortable trip.”
With a boat and a plan, Spineto began her journey. She left her kids with her parents, and Tony, a teacher, remained at home to finish out the school year.
“In terms of being aware of the dangers, I wasn’t really concerned,” Tony said. “She’s very smart about her diabetes, and I’ve always been very confident about her being able to control any situation.”
Spineto admitted she got jitters during the early part of her trip.
“The first day I was really nervous,” she explains. “I was taking this on, and I didn’t have a lot of time on the water. I had never taken a boat out by myself, and I had never sailed point to point. For what I was doing, I had very little experience.
“On one of the first days,” she says, “the wind was coming straight down a channel and my engine cut out.
There was no engine for me to use; it was on the fritz the entire time I was out there. I was trying to sail against the current up a little channel and figured out I couldn’t make it. You can’t sail directly into the wind; you have to zigzag up the channel, and I saw that it wasn’t going to work. At that point, I thought either I have to sail 30 miles around this long line of keys just to make it—which was more than I was planning on doing that day—or quit.”
“Right then a Coast Guard boat in the area doing drills saw I was struggling, and a guy hopped on board and towed me through the channel. The engineer fixed my engine and pulled me right through.”
On her second day, Spineto recalled being bored. “There wasn’t a lot of wind, and I was spending 8-10 hours on the water alone with nothing going on. It was a long, dragged-out time.”
On the third day, she missed a small craft advisory warning and went out on a day with 25-knot winds roughly equivalent to about 30 miles per hour. “I was right on the edge of what I could handle with my experience. I knew what I should be doing, but I had never shortened my sails nor reached my sails. The guy who gave me the boat said, ‘You do that and then you do this.’ I kind of knew what I was doing, but to actually do that on the fly with winds that could have knocked me down was actually scary.”
“The next day was supposed to increase in winds, and I wasn’t dumb enough to take the boat out that day. And then, on the final day, I had gotten the boat to the near side of Key West and figured I had made it to Key West and didn’t need to bring the boat all the way around the outside. Winds were far too scary for what I could handle. So I spent that last day just cruising around Key West and enjoying the sites.”
In the end, Spineto completed her mission to prove she could sail solo for three days with diabetes. She took control of her condition, rather than let her condition control her.
“It was a very emotional moment for me because I was proud of her,” said Tony, “and it motivates us to continue doing what we do as a couple to inspire people who have similar circumstances. In our relationship, one person will do something and the other will do the next. We keep challenging ourselves.”
Still, Spineto’s solo journey presented new challenges to
managing her daily routines.
“I’m used to taking on my diabetes through a triathlon, where the exercise you do makes you more sensitive to your insulin, and that makes everything a lot easier,” Spineto said. “Sitting on a boat is just the opposite. If you’re still, your body is not going to use the insulin and not going to be able to move it through your system, and everything becomes really difficult. So learning how to adjust my insulin rates based on the inactivity was a new challenge.”
To combat the isolation, Spineto had a smart phone with a solar charger and exchanged a lot of text messages with her husband. She kept a blog of her experiences, which she said saved her sanity during the slow drifting from island to island. She stayed in touch with followers and friends through Facebook and Twitter. Prior to her journey, she had been writing, Islands and Insulin: A Diabetic Sailor’s Memoir, and long periods of time on the water allowed her to work on the book.
“I wanted to use that time to think about where I had been with diabetes and life in general, and think about where I was going and what I wanted to do,” she said.
Since returning from that 2011 trip,
She said she continues to meet people who have amazing
testimonies of achievement and activity. Her personal stories is just one of many to be written:
“There are millions of diabetics with no network, with no concept that they can overcome their condition by gaining knowledge about how to do these things safely,” Spineto said. “They’ve really let it beat them. They’re sitting down and not doing anything. I wanted to tell the story about how you can go out and do this.”
by Josh Pate