Elena Westbrook is a former camper, five-year volunteer counselor, and Camp Odayin enthusiast. She is a proud third generation Chicagoan who currently works at a small marketing agency in Chicago’s west loop. When she’s not at Camp Odayin, she’s trying new recipes, diving into Chicago history, and catching up with camp pals old and new.
Elena shared a bit of her story with guests at our first annual Big Heart Bash in Chicago on October 13, 2022:
Through sharing my story, I hope that I can, in the next few minutes, impress upon you the magnitude of the difference you’re making. As was mentioned, I am a former camper and current heart patient. I genuinely cannot count how many cardiac procedures I’ve had, and I have no memory of a life without heart disease since my condition was discovered when I was 2 months old. What I do remember, what it all felt like before I went to camp.
While I was growing up with serious cardiac illness, well-meaning adults tended to treat me like I was made of glass. I grew accustomed to being sequestered, separated, having to constantly explain to both peers and adults why I couldn’t fully participate in certain everyday activities because of the fatigue those activities would induce, eat certain foods because of their conflicts with my medications, or even walk through a metal detector because I had a pacemaker. It was kind of stressful lifestyle for a 12 year old. I glowered enviously at those big-name diseases with well-publicized 5Ks and people wearing pink for a whole month, and trendy rubber bracelets. On the occasions people did mention ‘heart disease’, it was all old people and something about cholesterol, which meant they obviously weren’t talking about me. Nobody knew anything about kids like me. My diagnosis was cardiomyopathy. My disease was loneliness.
Then, in 2005 during one of my many cardiology appointments, I picked up a brochure sitting on one of the side tables in the waiting room. It described a summer camp, a real sleepaway summer camp, for kids with heart disease, in some suburb called Minnesota. But I was overjoyed, because prior to that moment, camp had just been another thing on the long list of stuff I could never do. After much pleading and very diligent research, my parents agreed, piled the family into our SUV, drove six and a half hours, and nervously hand-delivered me to Sara Meslow and her phenomenal staff.
The rest, as they say, is history. At camp, for the first time in my life, I met a lot of other kids who were just like me.. I met other kids who had also had countless surgeries and proudly sported the telltale “zipper” scar on their torso. I met older teens, and counselors who served as role models who truly “got me” in a way few others did. I tried new things that my thoroughly urban environment simply couldn’t have introduced me to – horseback riding, tubing, kayaking, and roasting marshmallows over a bonfire (we usually just used the microwave at home).
For five glorious days, I was introduced to myself, and to who I might be outside of hospital rooms and surgeries and anxiety. For five days the most salient detail about me to most adults, that is to say my heart problem, just didn’t matter. I also gained really important perspective on my life and the severity of my condition, as I met many other kids multiple diagnoses of equal severity to my own.
When I returned, my parents were floored. I overheard my mom telling her sisters how much more confident I seemed, no small feat for a middle school girl. They happily sent me again and again and again, and soon my friends became theirs too. When I “graduated” from camp, the support didn’t stop there, as the young adult retreat reconnected many old camp friends and provided valuable information about how we might best manage our transitions into the world of adult cardiac care.
I went for fun and I gained a family, a community, and the sense of identity that so many chronically ill people are robbed due to circumstance. My parents could connect with others who could truly understand their worries and hopes for their child. I met one of my lifelong best friends at camp that very first year.
I simply do not know who I would be if I hadn’t had that chance at 12 years old. Each year at camp I could see bright, technicolor flashes of the adult I might become. Historic civil rights activist Marian Wright Edelman said “You cannot be what you cannot see”, and through camp I could finally see so much. So thank you for your support of a place that allows heart warriors, families, and friends to see and be seen. Even now, on the other side as a counselor, I still feel that deep sense of connection, wonder, and joy from our community and the many people connected to and through it. I am beyond excited that even more kids from my neck of the woods will have this opportunity. Thank you.
