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Today we are delighted to share a spotlight interview with James Rukin - XLA Life’s newest team member. The interview was conducted last summer with the Jeffrey Modell Foundation. We at XLA Life are very grateful to share this amazing interview, and thank the Jeffrey Modell Foundation for their help.
James was diagnosed with XLA as a young child and is now a thriving 14-year-old. James is a wonderful role model for our patient community. He is an inspiration for how to live life to the fullest; never dwelling on his chronic disorder. We hope you learn something new and feel encouraged after reading James’ positive words!
JMF: What inspires you? In general, I am inspired by people who work hard to achieve their goals despite the obstacles in their path. I am also motivated by selfless individuals who take their own time to improve other people’s lives.
We know you’re a big sports player. What is your favorite sport to play? To watch? I love sports – watching and especially playing. I have been involved in sports my whole life and my favorites are lacrosse, soccer, golf, football, and basketball. And when I can’t be playing, I love to watch NY sports teams (Giants, Mets, Rangers, and Knicks). Lately, my favorite sport to watch has been college lacrosse!
Outside of school and sports, what hobbies do you enjoy? I love hanging out with my family whether we are cooking, grilling, traveling, swimming, or looking for an adventure. I also love to play board games, video games, and work out.
What is your favorite childhood memory? One of my early memories is from one of my first IVIG infusions at Mount Sinai when I was around three years old. I was really scared because my mom had put numbing cream on my arms, and I was in a huge hospital with a lot of strangers. Shortly after I sat in the infusion chair, the entire staff in the infusion department surrounded me and started to sing “My Favorite Things” from The Sound of Music. They made me laugh since they were having so much fun and that distracted and consoled me. I was so grateful that they were willing to act silly and step outside of themselves just to make me feel more comfortable. Even a little gesture can make a big impact on someone else’s life.
What do you wish more people knew about living with a chronic disease? Do you have any advice you’d like to share? When I was younger, I was terrified of my infusions. According to my parents, I was extremely strong, and for three or four years my father had to leave work every month to physically hold me down before I was stuck with the IV needle. I remember screaming and squirming to avoid the stick. I always wanted to watch the procedure and while that was important to me, it probably exacerbated my anxiety. I didn’t understand how to make myself relax, and everyone was on edge. But, most of my nurses were great and they utilized innovative techniques to try to alleviate my fear. One of them brought over an assortment of unique-smelling hand sanitizers, another one would talk to me about her kids, another would bring me candies and small gifts, and another would instruct me to wiggle my toes as the needle went in. I don’t remember which method worked the best, but what I do know is that after a while I got comfortable with the process and I’m ok with getting the infusions now. I think it is important for young patients to know that the extreme fear dissipates as they get older--I promise, it gets better! The needle hardly bothers me now. It has become a part of my monthly routine, and it really is not such a big deal anymore!
Overall, my illness has taught me a lot of things, including the importance of being kind to other people. Since my diagnosis with this challenging illness, my medical team has treated me with such incredible care, kindness, and respect. From an early age, the staff made me feel as safe and comfortable as they could. They also talked directly to me, not just to my parents. This made me feel as though my opinion mattered, and that I was not just a spectator in my own treatment. I hope that I have started to pay those kindnesses forward. While being kind is most important, I also believe that my disease has taught me to appreciate and embrace differences in other people. You never know what someone else is dealing with, but whatever it is, it is usually fascinating. Each of us is unique and individual differences are cool and certainly make the world more interesting. My parents always treated me like I was "normal" and as a result, I really do not think about my immunodeficiency until the day of the infusion. I would like to provide the following bit of advice: try not to dwell too much on your disease. Be smart, but also, live life to the fullest and enjoy all it has to offer.
XLA Life is very thankful for our friends at the Jeffrey Modell Foundation not only for conducting these interviews, but also for allowing us to share and amplify their reach. We look forward to more great work together. To read the interview on the Jeffrey Modell Foundation website, please click here.
If you are interested in sharing Your XLA Life story, please reach out!