Each year, Epilepsy Foundation New England holds two, week-long sailing camps: one in Portland, ME and one in Newport, RI. Children and adults with epilepsy, along with family members, are able to get out on the water in specially designed boats and are taught how to sail. This year, Sail For Epilepsy was invited to participate and we were looking forward to bringing our boat to the camps. We planned to talk about a variety of topics: how to navigate, a few simple knots, identifying some constellations, and how Cepheus might differ from the boats they were using but that many of the concepts were still the same. However, due to the covid pandemic, we were forced to change our plans and shift the camp to be virtual.
Last week’s camp was facilitated by an impressive group of caring Americorp members, who worked together to plan each day’s event. They helped create a sense of community within the camp and were very attentive, engaging with the less out-going campers to bring them into the conversation.
Each morning started with Sail For Epilepsy giving a presentation on a specific topic. Day one started off with a boat tour, showing different parts like the helm, safety equipment, lights, the mast, the boom, the sails. Engaging the participants was one of our goals, so instead of just pointing at objects, we asked if campers could identify some parts of the boat. A few had participated in the in-person sailing camp last year and knew some of the answers. This helped promote more questions, related to how each part was used and how everything worked together to sail the boat.
After each presentation, there was an activity in a virtual break-out room. The break-out rooms were based on ability, as there was a full range of cognitive function represented in the camp. Some campers struggled with verbal communication or motor skills, while others were high functioning. During the boat tour, we showed the flags that we had flying in the rigging (including the partner flag for Epilepsy Foundation New England, which got a cheer) and discussed the use of signal flags, whether it be to send a message to another vessel, to designate the class of sailing boat, or even to protest another boat in a race! In the virtual break out rooms, participants then made their own flags and shared them with the full group at the end. All of the flags were awesome but we quite enjoyed the one that showed a car with “this is what zoom used to be!” We plan to get copies of all the flags to make into one real flag, that we’ll be able to fly from Cepheus in the future.
During the rest of the week, we were able to teach many of the same topics that we had planned on for the in-person camp. We talked about different types of knots, what they were used for, and how to tie them. Another day was constellations, focusing on the Big Dipper and how to use it to then find Polaris, the North Star, and its use for navigation. We also covered the importance of navigational markers and maps – or charts in our case – and the during the break-out activity, participants then drew their own maps.
One of the challenges of the camp – and this is also true of undergraduate teaching – was to make sure that the topics covered were taught in a way to captivate everyone. A tendency can be to teach to the lower 10% in the class, but you have to range what you’re doing, so that you can stretch the upper 10% as well. Not diluted too much, but not too complex.
The week culminated with the final live session from the boat as we were getting underway in Newport, motoring to the start of a race. We were able to point out the navigational markers we had talked about earlier in the week, view other boats who had their sails up, look at various points of interest on land, as well as answer questions from the campers, such as what our instruments were telling us or how we’d see other boats at night. The campers even had a surprise for us: most had made posters, wishing us good luck in the race!
Some campers were more out going than others. It was difficult to tell how much of the content some of them were receiving, but lack of verbal feedback isn’t an indication that they weren’t having a good time or learning something new. One camper in particular had a very difficult time with verbal communication, yet we found him to be incredibly engaging. You could almost see the two parts of his brain: one part that was thinking and formulating questions, and then the other part of his brain that was trying to communicate. One was significantly challenged in terms of communication, but you could tell he was really thinking. And he was so excited when he managed to communicate and would get an answer. You could see the actual joy in his face. It is a frustrating challenge to face, to be unable to communicate what is happening in your brain. It was really rewarding and made the whole week worthwhile, to be able see this one person with epilepsy engage and be excited.
We had multiple goals for the camp: to connect those with epilepsy with each other and into a community; to facilitate learning; to have some fun. We also wanted to show people with epilepsy that it is possible to do more. Having epilepsy shouldn’t stop a person from living a full life, as long as they have the necessary guardrails in place.
Our thanks to the Americorp members for helping create a sense of community during the week. We think that the connections made between the Americorp members and the campers will continue, even though the camp has ended. We’ve also welcomed many of the participants on board as Virtual Shipmates and have connected with them via social media. We look forward to their support as we continue to work towards our ultimate goal of sailing around the world.