Finding Strength in Uncertainty
On Tuesday and Wednesday I was at Boston Children’s continuing in the Hope 3 drug trial by Capricor, which has the potential to improve upper arm strength and heart function. My heart function has improved since starting the trial, yet it looks like the drug will not be getting approved. What a strange contradiction. Still, I try to stay grounded. I have been commuting back and forth from Boston for two years, and being part of this research has felt meaningful, even when the outcome is uncertain. My parents find it harder, watching their child be denied a medication that clearly improves heart function while noticing my arms weaken over time. For me, it is not that sad. I am too focused on landing my next health PR role, so my skills and talent continue to shine through.
I’ve been busy sending out applications and reconnecting with PR professionals who are both well connected and attuned to my disability. During my internship at Porter Novelli, I had the chance to work with colleagues who showed genuine kindness and support, many of whom I still keep in touch with today. At the same time, the office I worked in on 42nd Street was an older building, and some accessibility updates weren’t in place during my ten weeks there. Since then, the team has moved to a new office.
Beyond work I am focused on my personal goals. I hope to start a family in my late twenties or early thirties, so I have been trying different dating apps. I grew up with the quiet assumption that 25 was the magic number for marriage because my parents tied the knot then, and for a long time I pictured myself on the same track. A strong degree, meaningful work experience, and a personality that connects with people have always felt like the right ingredients for building a life with someone. While my path is unfolding differently, that vision still guides how I think about relationships and the future. Now I am testing Amata, where a matchmaker screens people before connecting them.
My blog has also stayed steady for nine months, giving me an outlet to share my experiences. I write about the pros and cons of agency life, how my caretaker setup works, and why agencies need to take disability inclusion as seriously as LGBTQIA+ and minority inclusion. Too often disability falls short in those conversations, and I want to help change that.
I also make time to live life outside of work. I went to Mass MoCA for live music, saw a surreal light show at Franklin Zoo with glowing pandas and fish, and even heard Mark Ronson perform at a fried chicken joint in Hillsdale. Closer to home, I spend afternoons at my local coffee shop Rubies, chatting with neighbors, swapping stories from my job hunt, and talking with young couples about raising a family.
Living with Duchenne muscular dystrophy I know it will never be cured in my lifetime. But I do not want a cure. It is part of who I am, challenges and all. What I want is to manage symptoms, build a career in health PR and pharma, and find an authentic relationship with someone who loves me as I am. A cure would turn me into someone I am not, but a healthy long life managing symptoms feels truer to myself.
Each day is a new opportunity to keep up the fight. One of my PR connections told me that when she first started she applied to hundreds of jobs, cried to her mom in frustration, and now she is thriving. I hold onto that. So I take it day by day, living up the time I have left in the Berkshires while the Big Apple waits for me.
