It was a sunny and dry fall day, and I was poolside at a hotel in Las Vegas. I spotted a 19-year-old young woman in the corner of my eye. She was chatting up the very good-looking lifeguard, who was probably in his 20s. So I hopped on my foam raft, wearing floatie wings on my arms, and I started paddling.
I was 7 years old, and I don’t know why I still had floaties, but I wore them proudly. I floated by once, and the young woman didn’t even look over at me. I floated by again, and still nothing. I floated by a third time, and the lifeguard noticed I was sort of stalking them. “Hi!” I exclaimed. “That’s my sister, and she’s supposed to be paying attention to me.”
Sometimes I wonder if my health was ever scary for my sister. Everything that could go wrong started at an early age for me. I reacted to a vaccine at 2 months old, had a massive seizure, and stopped breathing. I spent time in the hospital, developed apnea as a result of the seizure, had to be on a monitor for months, and sometimes stopped breathing. My sister was 12 at the time, and I was not the baby sister she expected. My parents let her name me Samantha, after Molly Ringwald’s character in Sixteen Candles. I hope that was some consolation for the years to come.
I don’t really remember my sister taking care of me. My parents made sure she didn’t miss opportunities to enjoy her youth because of how sick I was. I always wanted to be with her, and if my parents weren’t around, she was my next best option for comfort. Still, for all of my health issues, I was a fairly independent child. My main source of solace was a baby blanket that had belonged to my sister’s father. My sister’s father died when she was 5, and I was born on his birthday. My family looks at my birthday as a blessing. I carried that blanket (or “the schmatta,” as it was named) with me everywhere, much like the Peanuts character, Linus. The years weren’t kind to the schmatta, and the preschool often mistook it for a kitchen rag, and it was horrifying every time that happened.
My sister was a waitress at a restaurant over the hill behind my preschool. So on one rough day, when someone mistook my schmatta for a rag at school, I wanted to see my sister at work. The teachers were slightly puzzled at the 3-year-old trying to make a great escape. “I’m going to see my sister,” I yelled. “I want my Amy!” If I couldn’t have my schmatta, I wanted a hug from my sister.
Now that I’m older, I’ve been curious as to what it is like to be the sibling without a chronic health condition. So I talked to fellow National Youth Leadership Institute member Manda, a 21-year-old pursuing a master’s degree in public health at Boston University. Until this year, she was the only sibling in NYLI of someone with a bleeding disorder who didn’t have one herself. Her 16-year-old brother, Anthony, has type 2 von Willebrand disease.
I asked Manda how her brother was initially diagnosed, how it affected her, and if she was frightened by what her brother was going through. Anthony was diagnosed at about age 5 after frequent bloody noses. Manda said she remembers sitting next to him while he was holding his nose. She was never frightened by his episodes, but—since she was 9 years old at the time—she was sometimes annoyed when he bled after sneezing.
Anthony once hit his front teeth on a restaurant booth, and he bled for days. At the hospital, Manda’s mom overheard an emergency room nurse asking a doctor if Anthony had von Willebrand disease. She brought it up at Anthony’s next doctor’s appointment, and he was then tested and diagnosed. Manda remembers feeling a sense of ease when her brother finally received his diagnosis, since the family finally had a tangible reason for what was going on. The family made contact with their local chapter.
In recent years, Manda has learned how to help infuse factor at camp programs, but she has never needed to help her brother infuse. She views herself as a normal protective sibling, and she doesn’t feel her brother’s bleeding disorder has made her overprotective. She is proud of how independent and responsible he is with his health. Her brother’s bleeding disorder has actually had a very positive effect on Manda’s life; it’s why she first got interested in genetics and public health. Her brother’s experiences helped her decide what type of career she wants to pursue.
Even though I didn’t have an effect on my sister’s career choice, I’d like to think having me as a sister hasn’t been that bad. If anything, our life experiences have made us stronger. She can understand me in a way no one else can. She lives an hour away from me now, but we are still close. Recently, my parents were out of town when I had a quick-spreading staph cellulitis on my leg. I was terrified, but I knew my sister was only a phone call away. I called her twice that day, mostly for comfort.
I still look to my sister for support, even if I no longer climb a hill to get to her. She’ll always be there as someone I can count on, and I hope she sees me as the same.