For the last five and a half years, it has become an important mission of mine to try to end each column on somewhat of a positive note.
Because, as we all are aware, there’s a lot of darkness in the world currently, and I try to add as much space for light as I can. It goes without saying that sometimes finding a positive note to end on is harder than others, especially this past year.
But recently, I got to experience perhaps the biggest source of light that I have so far this year — a week away in Martha’s Vineyard with my family. A week without doctor’s appointments, blood draws, meetings and article headlines. A week to read books, reconnect with family and just be.
It was a miracle, in itself, that I was able to go on this vacation. From January through March, prospects for my going were looking bleak. I couldn’t sit up for any prolonged period of time because my heart rate would increase to frightening levels. Thankfully, in May, when my iron levels rose to a normal level, my heart rate stopped acting up. I was optimistic that I would be able to make it on the car and ferry rides. But then there was the additional hurdle that I have gotten very seasick in the past.
Armed with my reflux medication, salt and Pedialyte to control my heart rate, if needed, and my anti-nausea pressure point bands, I did surprisingly well on both ferry rides. The one on the way back was a little smoother because I was able to sit on the upper deck of the boat, with the weather being more agreeable. We came into and left from a different port than last year, one that has the bigger boats coming and going, which probably contributed to a smoother ride, along with the very kind people who worked there and helped carry my equipment to make the journey as seamless as possible.
And I didn’t take my health being stable for granted while on vacation. Honestly, I went out more during five of the seven days than I have in the past seven months.
This was mostly because we had been to the island three times before, so we knew the lay of the land. And I actually felt up to doing things more in the evenings because I wasn’t sitting by my phone waiting for a boy to text me back.
Arguably, one of the most stressful elements of going on vacation as a disabled person is finding accessible places to go, especially accessible beaches. As my mom and I have learned the hard way over the years, everyone’s definition of “accessible” is very different. Sometimes, it includes steps, one step or, my personal favorite, a very large lip that is impossible for me to get my wheelchair over.
Therefore, every time my family and I go away together somewhere new, it’s always a game of trial and error to find a beach that I can actually get somewhat on. Typically, I am content to stay on the entrance ramp because I don’t particularly enjoy getting sand all over me. And when we first went to the Vineyard in 2016, we stumbled onto one of the most accessible beach accesses that we’ve come across — a long boardwalk and a sizeable deck that I can perch my chair on, while family members spread out around me.
Thankfully, the weather was gorgeous the week that we were there, so we weren’t lacking for things to do. Going to the beach was the obvious choice, and that was the main daytime activity on five out of the six days of the week we were there. Then, in the evenings, we went out to dinner a couple of times. One restaurant was especially accommodating when my mom called them and told them about the situation.
Yes, I probably pushed myself a little bit hard at points in order to keep up with everyone else. Also, yes, I was very tired after the vacation, but I choose to primarily blame that on my iron levels dipping again.
Plus, I’ve come to the conclusion that I’m never going to get these moments with my family back, so I might as well lunge into them, headfirst. Because all of my other problems will always be there. I know that from experience very well.
Oftentimes, the darkness can be all encompassing. But, sometimes, it’s just easier to turn towards the light.
Gazette columnist Joanna Buoniconti is a freelance writer and editor. Her work is also featured in the Muscular Dystrophy Association’s Quest magazine and SMA Daily News. She is a reader at West Trade Review. She can be reached at columnist@gazettenet.com.