Just the mention of “New York City” caused my ten-year-old brother Jack’s entire body to stiffen up. Ever since he could remember, the city has been tainted for him with the shadow of doctors, invasive testing, uncomfortable hospital beds, and the tense, stressful feelings that emanated from these visits. Once each year, Jack left his home outside D.C. for a three day visit to a place many find filled with opportunity and adventure for his yearly E.E.G at NYU hospital.
In the summer of 2008, New York City became Jack’s temporary home, while Amagansett became mine. My parents went to the city with Jack, while I (twelve at the time) and my six-year-old brother went to live with my grandparents at their home in Amagansett.
Jack has a rare genetic disorder called Tuberous Sclerosis, which causes tumors to form in his vital organs. At the time, his brain tumors were causing him to have over twenty seizures a day. The intention of this particularly long visit was to locate the tumors which were causing the seizures by attaching electrodes directly to his brain. This required an extensive operation. The hope was that doctors could locate these tumors and then remove them. The trick to all of this though, was that in order to locate the seizure-causing tumors, Jack had to have a seizure while the electrodes were attached to his brain. Long story short, he didn’t have one. So for almost a month, Jack lived in the NYU hospital as his neurologist tried every tactic imaginable to induce a seizure. It felt strange to pray for your brother to seize after years of praying for the exact opposite, but that’s what we did.
The juxtaposition between my summer and Jack’s was immeasurable. Two completely different worlds were separated by less than a three hour car ride. My grandparents live on Further Lane in a house I still fall in love with every time I lay eyes on it. It’s a child’s summer-time dream: a beautifully weathered gray cedar home with a sprawling backyard, littered with trees of all kinds. The strongest branches held handmade wooden swings, an old hammock and a zip line that spanned what felt like miles. The dark bottom pool in the center was built to look like a pond, edged with flowers and rocks with each twist and turn it made. We felt like pioneers exploring every last inch of that yard.
Every day felt like a Saturday. Mornings were filled with Dreesen’s Donuts, or if we were really lucky, with “chip whiches” (a scoop of vanilla ice cream between two crispy Tate’s Chocolate Chip Cookies). Days were spent walking along the beach, boogie boarding, searching for frogs in the pool, feeding ducks at the duck pond, collecting endless amounts of rocks at the beach below the Montauk Lighthouse, or just simply spending hours on end among the backyard trees.
The nights were quiet; time slowed down and there was more time to think. Night time was when I began to miss the other half of my family, feeling an innocent guilt for enjoying my days so much, for finding solace in a place only a car ride away from where Jack was suffering. Mom and dad would call after dinner. “Did Jack have a seizure?” We continued to ask, though the answer seemed to always be no.
I had been coming to this house since I was born, but Amagansett in the summer of ’08 was a different Amagansett than I had ever before experienced. It became my distraction, a place where I could fill my days with activity and adventure. It’s the kind of place that simply engulfs you one day at a time into an old fashioned, timeless lifestyle.
There was one week before school was to start back up again. Jack was finally allowed to leave the hospital to join his siblings in Amagansett. Nerves were high due to the underlying thought in the back of all of our minds: the minute he’s not at the hospital anymore he’ll begin to seize again.
I still feel as though I witnessed a miracle that summer. From the comfort of my own little world out in the East End, I witnessed the beginning of a new chapter through nightly phone calls and the occasional Jitney into the city. Jack never had a seizure in the hospital. He never had one in Amagansett in that last week of summer; he hasn’t had one since. For whatever reason, the twenty seizures a day plummeted swiftly to none and simply remained there. I don’t why. No one really does. Some considered the operation a colossal failure, a complete waste of time and money. Maybe it was; maybe he would have stopped seizing regardless of the intensive testing. But I don’t know, and for that reason I remain believing that it was worth while.
Whether it was a miracle, fate, or complete and utter randomness that stopped his seizures, observing Jack’s first week of freedom was mesmerizing. He was free from not only the wires chaining him to his hospital bed, but the seizures that led him there one long month before. And what a better place to finally be free than the place where New Yorkers have always flocked to escape their fast-paced lives for momentary relaxation and serenity. Amagansett engulfed him as it had to me, allowing him to finally be content doing nothing. It became his home the moment he arrived and has continued to be his solace and mine every summer since.