On June 28th, Erin Spineto, Renee Moreno, and I swam 12.5 miles around the island of Key West, FL. We were the first team of people with type 1 diabetes to swim the race, and we swam a significant portion against the current. The water was so shallow that we jammed our fingers into the coral, and they bled. We swam over the tops of sharks. We were impatient with each other and laughed about it later. We were each relieved to climb back into the boat when our own portion of the swim was complete. In terms of swimming stamina, we were prepared, but conditions made the race more challenging than we expected, and now, we’re stronger for it.
Erin, Renee, and I didn’t swim around Key West because we were after a speed record. We’re just people who made swimming a priority for several months, with hopes that through training and racing we’d learn something about ourselves, each other, and our diabetes.
Here we share what we learned with you, hoping you might find some of it useful if and when you prepare for an adventure.
1. You don’t have to articulate it.
Our reasons for doing this swim were questioned, even by those who know that we are capable and competitive, that we like challenges and like being active. Why 4.2 miles in open water, on the other side of the country where 50% of the shark attacks in the United States happen, where it’s so stupid-hot that the ocean isn’t even refreshing, and in a medium where our diabetes gadgets might not work? We asked ourselves the same things.
Through the project, we wanted to spread awareness, and as I trained, I realized I didn’t need a specific reason why I was doing this. Some things just feel right. We worked hard to prepare for the swim and the preparation made us healthier than we would have been otherwise. It’s a great story to tell about something we did with people we love, in a beautiful place, while improving our relationship with diabetes.
2. Sometimes your endo doesn’t know how to help you because she’s not diabetic, and she’s not swimming around Key West, and she has another patient in 20 minutes.
Renee had three appointments with her endocrinologist during our training for the swim. “The first appointment was positive and encouraging with only a mild undertone of ‘you’re crazy,’” she said. “The second was a little more skeptical as I had come off the pump and started injecting Levemir for basal insulin.” By the third appointment, when Moreno asked for help troubleshooting post-swim highs, the doctor said she couldn’t help her, “If you were on a pump I’d know what to do.”
But, the post swim highs were not specific to Moreno’s switch to injections. Erin, using an insulin pump, also experienced the same insulin resistance after swims.
As the Chinese proverb says, “Tell me and I will forget. Show me and I may remember. Involve me and I will understand,” we found answers through active learning – learning by doing. We based our trials on direct experiences in the water while training. Through experiments with new insulin delivery methods in a very specific environment, Renee created solutions to her post swim challenges with insulin resistance. She found that with injections any post-swim high blood sugars were easier to manage than the extreme highs she was having from being disconnected from the pump and not receiving her basal insulin.
We’ve learned that the best place to find the answers to our questions is in the medium in which we wish to accomplish our goals.
3. There is no substitute for experiential learning
If you are training for an open water swim, it’s most helpful to train in open water.
“My confidence to swim in unknown water didn’t come from laps in the pool,” said Renee after the race, “It came from knowing I was mentally and physically capable of recognizing, accepting, and adjusting to whatever the conditions would be that day.”
We designed our training swims to replicate what we expected in Key West and to include the possibility for unknown consequences to occur, creating opportunities for both mistakes and success. We reflected on each experience, adjusted when necessary, and moved forward better informed.
Renee wouldn’t know that she has hypoglycemia unawareness – only while exercising in the water – if she didn’t swim often and test in the middle to figure it out. Knowing this didn’t stop her from doing the swim, instead it enabled her to properly prepare. She arrived at our swim locations ahead of time and placed an extra glucometer and carbohydrate snacks on the beach at the turnaround point.
We tried to get our continuous glucose monitors to read to our receivers in the accompanying kayak boat. We experimented by placing our sensors in different locations on our bodies that might increase the time they spent out of the water, sending a signal - no luck. So, we prepared to not depend on that data on race day.
Erin rigged up a waterproof pouch for her receiver, but on race day she was unable to read the screen because of the sunlight. This is something we might have figured out ahead of time if we’d varied the timing of our workouts more to align better with the sunlight on race day. You can’t learn that in a medical office.
4.) Your support crew is a luxury, so prepare for the worst-case scenario
One training day we gave all of our supplies to our friend Katie Bringe (also T1D) who’d planned to stand-up-paddle alongside us. Looking forward to travelling light on this swim and mimicking race day, we filled her dry-bag with diabetes supplies and car keys. Since our swim paces differed, we’d planned for Katie to paddle between us to distribute any supplies we might need.
What we hadn’t considered was the size of the swell that day. Katie wasn’t able to get past the break (with her dog on the front of the board). We found ourselves treading water past the break, and getting cold. We had to decide: Do we head in and restart the swim a mile down the beach where Katie could enter the water more easily with her board, or do we continue without her, without supplies?
If we’d prepared to be without support, we’d have known we could complete the swim. But, the reality was that we had only one energy gel between the three of us, one I’d tucked in my suit. Still, we decided to go.
Forty-five minutes later we were separated. I wasn’t in danger, but was too cold to continue, my jaw was shivering and affecting my breathing, and every part of me wanted to be on the warm sand. I was also feeling guilty that I’d led the group out without proper supplies. Renee was close enough to see that I’d stopped and was treading water. Seeing how cold I was she recommended that we head in to the beach. Three hours later, with the help of a lifeguard (we used his phone to text Katie), we were reunited with our cell phones, supplies, and insulin.
We learned that it is important to be self-sufficient in unpredictable environments and that it’s important to have a plan B and communicate it to everyone. From that day on, even when we had accompaniment, we carried our own low blood sugar supplies and prepared to be without assistance.
5.) Exercising can be fun, just add some purpose
Exercise is often portrayed as a punishment, a chore, or something for which we deserve a reward. But, exercise itself can bring great pleasure. If you set a goal with benchmarks that require exercise, you’re much more likely to feel that the suffering is worth it.
“Before training for this swim I only swam for waves,” Renee said. “I signed up to do this swim because I hate running and I thought it was something I “should” be able to do. Turns out swimming is super fun and my diabetes loves it!”
For me, respect for 4.2 miles in open water and accountability from my teammates provided the motivation I needed to adhere to an improved exercise routine. I had the opportunity to view sea life, earn some tan lines, and laugh with friends along the way. What a deal!
6.) Sometimes inspiration works in reverse
Erin brought us together for the swim with hopes that people would follow along and be encouraged to find their own athletic passion and pursue it, ultimately, we also drew strength from those people. Fellow type 1 athletes offered to accompany us on our training swims in kayaks or on stand-up paddle boards and it was their enthusiasm for what we were doing that made the tough days fun. The day we flew to Florida I received a text message from a new friend of mine, Delaney, a high school senior living with type 1 diabetes. “Good luck in your Key West swim!” she wrote. “Saw it on Facebook. Make us T1Ds proud!” Delaney will be running cross-country and track on scholarship at Princeton next year, she’s someone who would never ask why we were going to swim around Key West, instead, she gave us purpose.
7.) If you’re not moving forward, you’re moving backward
By the time Renee entered the water on race day, the tide around the island of Key West was such that the current was moving against her. She spent over two hours fighting a current so strong that every time she stopped for water she had to frog-kick on her side just to hold her ground. Floating debris flew by her in the opposite direction. By the time our team reached the location where she was to tag me to start the final leg, the marker had been pulled from the water, so Renee swam a significant distance without a finish line in her sight. After the race, she reflected on the swim as a diabetes metaphor; “If you’re not moving forward, you’re moving backward,” she said. “A “break” only means you have catching up to do later, and there is no finish line (like when they literally pull your transition buoy out of the water).” The reward is in knowing you’re strong enough to do each stroke, each step, each inconvenient blood test, each injection, each CGM insertion, each alarm in the middle of the night, each walk after dinner, because, that is the only progress for which we have control.
8.) You’ll be surprised by how infrequently you think about diabetes
The start of my swim didn’t go as we rehearsed and I was rushed getting into the water. I was chewing salted small golden baked potatoes to fuel the half unit of insulin I’d taken just before we realized I’d be getting in the water sooner than I thought. I messily applied an extra layer of zinc sunblock as I ate, careful not to get the white stuff on my goggles. I put my water bottles and emergency low supplies in a bag for the crew on the boat to give to Katie in the kayak. I had eaten well throughout the day, so I didn’t plan to eat while I was in the water. I sat on the edge of the boat and frantically asked Erin for last minute directions pointing to landmarks on the coastline ahead as I put on my cap and goggles. Renee approached, and I dove in. The water was immediately relief. I’d been on the boat all day, and finally was going to be able to do what I came to do – swim farther than I’ve ever swam before.
It was the greatest honor to be able to swim after Renee, and give her a hug at the end of the longest swim of her life. Then it was just me, Katie in the kayak, and less than two hours left in our allotted time to finish the race.
The first hour flew by. Katie paddled the tangent in front of me and I sighted her boat. We were going with the current for a while and I felt like I was flying. I was going to have to swim well if we were going to complete the race in the allotted time, so I only stopped once for a sip of water. The first shark I saw on the ocean floor was the color of terracotta pottery and I thought maybe it was fake. After the second, I realized nurse sharks are cute, boring almost. The bottom of the ocean around Key West was so foreign to me, seemingly Amazon as floating debris hit me in the face, Atlantis as I swam over conch shells covered in moss and coral that looked like old fashioned dishware. We rounded a turn which led to a straight shot down the coast to the finish. I looked at my watch. That’s when the sky it turned gray and the current was no longer in my favor. It got so shallow that I couldn’t take my normal strokes and had to run my hands down along my face, and keep my thumbs along my torso with each pull. I was avoiding the bottom for what seemed like an eternity, searching for deeper water, willing to swim farther for more depth. I wanted this part to end.
Then the sun broke for my last few minutes as I approached the beach. My watch told me we were going to make it in the allotted time. Relief. Hugs from teammates and crew on the beach. We had done it.
Looking back, I remember doing one serious self-check, slowing everything down for a few seconds and asking myself if I felt low. Nope. Onward.
Because I’d prepared myself mentally and physically, those few seconds were all the time diabetes required from me after I jumped off the boat and tagged Renee.
9.) If left alone we’d swim in circles.
The three of us met through Insulindependence and stayed connected because of the many benefits of the community. It’s good to be reminded that I have options, by people who like to do the things that I like to do.
In reference to changes she made to her diabetes management based on what she learned during training and racing for this swim, Erin said, “I don’t know if it was the challenge to make huge changes that got me to think about my care more, or if it is a better system, but my blood sugars haven’t been this good in a long while.”
“I learned that left alone I’d swim in circles,” said Moreno, “It’s nice to have support and accountability from teammates. And a kayak to bump into when I swim off course!”