Meet guest blogger Elizabeth Phillipson-Weiner, the mastermind behind EE’s “sEEcret project.” For fear of divulging key clues, we will keep the intro brief and somewhat cryptic. Elizabeth hails from Lower Merion, PA; she was introduced to Emily’s Entourage by her sister vis-a-vis her father, who is a member of EE’s Scientific Advisory Board and Leadership team; and her supreme talent can only be matched by her fierce tenacity and gigantic heart.
Emily and I went to the same high school, although separated by about 8 years. My oldest sister is a couple years younger than Emily and I remember hearing about her and her family while growing up in Lower Merion. I was raised by a research scientist and a chiropractor so we were constantly talking about medicine and science in my house.
The year Emily’s Entourage was founded, I was a freshman at NYU. I should’ve been out and about enjoying all the new things New York City and my new school had to offer but like countless times before, my body was failing me. I was diagnosed with Crohn’s Disease when I was 14 and struggled greatly to get my disease under control for the first 7 years after my diagnosis. I spent most of my first year of college confined to my bed or in class.
My middle sister, Lindsey, first introduced me to Emily’s Entourage through social media. She told me about the work EE was doing and said that seeing Emily’s posts made her stop and reflect everyday. I started following along with Emily’s Entourage from my dorm room.
Crohn’s Disease is an autoimmune disease that affects the digestive system. My disease presented with pain, nausea, frequent trips to the bathroom and finally, internal bleeding. By the time I was admitted to the hospital in 8th grade, I had lost so much blood that I needed an emergency blood transfusion and couldn’t safely endure anesthesia during a procedure.
When I received my diagnosis I felt relieved. What I didn’t wrap my head around at the time was the word “chronic”.
For the past 4 years, I’ve been in a deep remission with my Crohn’s. I have control over my symptoms and can go days, even weeks without feeling like I have an illness. When new symptoms crept up on me this past fall, I was again confronted by the chronic nature of my disease. Still, after all these years, it’s hard for me to retain that I have a medical problem that is never going away. It’s like a shadow in the corner waiting to strike me down.
Still, after all these years, it’s hard for me to retain that I have a medical problem that is never going away. It’s like a shadow in the corner waiting to strike me down.
Just as it was hard for me to grasp that word, “chronic” and all it brings with it, we as human beings seem to not be able to wrap our heads around the permanence and pervasiveness of illness. We want to fix things, to make them all better and go away.
It’s even harder when that thing that chronically ails you is invisible to others. I realized quickly after getting out of the hospital that people don’t like to talk about illness. As a result, I became withdrawn throughout high school, only opening up to my family. Because I never looked sick, my teachers and classmates thought I was faking my illness, even going so far as to tell this to my distraught parents during parent/teacher conferences. I often think about what it would’ve been like to have a friend like Emily during this time in my life.
This past fall, I attended a songwriting retreat in California. We were asked to write a journal entry about the thing we liked most about ourselves and then turn that into a song. I was a bit shocked at what I wrote. The things I liked most were born from challenges I’d faced in my life due to Crohn’s.
The things I liked most were born from challenges I’d faced in my life due to Crohn’s.
With the help of my wonderful co-writers, Nkechi and Emma Holden, “Anyway” was born. We had so much fun creating the song together and when we performed it for our fellow retreaters, there was a consensus that this song might be able to help and inspire others. I immediately thought of Emily.
When I got home from my retreat I played the song for my family. We were all in agreement, I had to get the song to Emily! My dad, a vaccine expert who recently joined EE’s Scientific Advisory Board and Leadership Team, was meeting with Emily and her mom later that week and said he’d try to play it for them if there was time. As I got into bed that night, I received an email from Emily, herself, asking to meet. I was so nervous for that first meeting but when I met her my nerves immediately melted away.
Emily has a magnetic, effervescent personality and is the single most caring person I’ve ever met. This is someone fighting her own massive battle with chronic illness and all she cares about is my health. I’d never spoken to someone who was so much like me.
Family is extremely important to both of us. We both have siblings that we absolutely adore and couldn’t live without. We both worry what tomorrow will bring with our diseases, so we stay up way later than we should, either working or thinking. When tomorrow isn’t promised, you try to pack as much as you can into today. We also both have a love and admiration for northern California, specifically Monterey. I told Emily I planned on moving there. She told me that CF keeps her tethered where she is but if she could move, she would move there. The unfairness of that hurt my heart.
Emily’s mom joined us for the end of our lunch and the 3 of us cooked up an idea for what we could do with “Anyway.” The result of that meeting has been over 6 months of hard work and big dreams on a secret campaign to raise critical funds and awareness for Cystic Fibrosis. We can’t wait for you to see it!
This project seeks to shine a light on those left in the dark due to lack of research funding and attention. We are racing against time to cure Emily and so many people just like her. Over the last 6 months, we’ve gotten some incredible people to race alongside us. I’m so excited to share with you our first teaser for the project featuring 2-time Tony nominee Laura Osnes.
Follow along on all of EE’s social media and donation page for more updates as we take you behind the scenes of the “Anyway” Campaign.