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I’m sitting in my son’s intensive care unit (ICU) room, on the window seat that transforms into an overnight bed with the help of a sheet and a pillow, watching the medi-flight land on the hospital landing pad across the way. For 19 years this scene has played out before my eyes. Ben is recovering from his 50th surgery, to address respiratory, orthopedic, or eye issues resulting from Schwartz-Jampel syndrome, the neuromuscular disorder that my husband and I unwittingly passed on to him at conception. I call these medi-flight landings my messages from God; each one is a reminder that no matter what is happening in this ICU room, it could certainly be worse.
When Ben had his first surgery at 1 year old, I learned from other parents of children who endure multiple hospitalizations that you bring photos of your child in a happier state to tape around the room, to remind the many members of the care team that your child is not the one they see before them, hooked up to tubes and in pain. As Ben became older and had repeated surgeries, often with the same surgeons, same anesthesiologists, and the same recovery room and ICU staff, these photos became less important, because his reputation preceded him. These health care professionals knew he loved school. They asked him what his favorite video game was, what languages he was studying, and whether he found his sisters annoying or funny. Now, following this latest surgery, I marvel as we witness the ICU team set him up in his room, with the occasional statement to my husband and me, such as, “I hear he just finished his first year of college, that’s amazing!” When Ben wakes up, they ask him, “What are you planning on majoring in?” Groggy and bewildered, he responds with weak statements of “classics” and “linguistics.” I could not have imagined this scene when he was 1 year old. It certainly could be worse.
I first wrote about Ben’s health care needs and experiences and how these impacted our family in this journal 13 years ago.1 Ben’s birth and the start of my health services research career coincided, yet his journey through the health care system helped me find my academic and advocacy voice. As patient-centered and family-centered care became more integral to the US health care system during the last 19 years, I began to play an unplanned dual role in the grant proposals and manuscripts that I was writing, and in the research projects I was conducting—that of both a family member stakeholder and an investigator. I could never approach a research topic such as examining access to care without thinking about all of the challenges families face in trying to get timely, effective, equitable care for their loved ones. Although I am equipped with strong knowledge of and experience with a range of research methods, it is my perspective as a family member, a mom, and an advocate for a now young adult with a rare genetic disease that has shaped how I approach the research my colleagues and I conduct.
Writing helped me find my voice, but modeling communication for Ben, I felt, was important for helping him find his. In preschool and elementary school, I joined him in his classroom at the beginning of each year, telling the kids and teachers about Schwartz-Jampel syndrome. The children’s questions were sometimes painful: Why does his face look like that? What is that tube sticking out of his neck? Why can’t he walk? I patiently explained myotonia in the simplest language possible, often asking Ben to flex his muscles, to bring some humor to this conversation. We brought a doll with a tracheostomy tube into the classroom so that kids could play with this; this doll had been a training tool provided to us by the hospital years earlier when my husband and I first learned how to change a trach. Later, I watched, with pride, as Ben began to share his own story as he progressed through school.
In sixth grade, for example, when 7 elementary schools in our town merge into one middle school, he led class discussions on Schwartz-Jampel, to ensure that his new classmates felt comfortable around him. But it was through specific activities, such as video game club or summer language programs, where he really found his friends. These kids didn’t need to know the specifics about his disorder. They just wanted to beat the best Super Smash Brothers player in the school, or plan a play in Arabic with the student who seemed most able to understand the intricacies of the language. My voice or modeling wasn’t needed here; Ben found his own ways to highlight his strengths.
As Ben grew up, I began to share my essays with him, to show him how his life experiences were shaping mine, how writing helped me develop resilience and energized me to keep advocating for him. Now, Ben writes about his own encounters. This year he published his first piece about the subtle and overt ableism he has experienced his whole life, even on his college campus. I read his essay, wondering if in some ways my efforts had contributed to this discrimination. Would he have been better off if I had just let him figure out how to—or indeed, whether to at all—talk to others about his condition? As a summer intern for a disability policy organization, he is discovering how to engage with stakeholders in the legislative process, learning about health care law that will shape his life for years to come. I reminded him that I am an experienced interviewer and shared tips for how to analyze these qualitative data and how to write up a report. He told me he knew what to do, thanked me for offering, but his look told me that it was time to step back. This was his work, not mine.
In third grade, he became best friends with the only other child with a physical disability in his class; their friendship was a source of strength and mutual understanding throughout their school years, as each underwent numerous surgeries, hospitalizations, therapies, and, sometimes, setbacks. Tragically, this friend recently passed away, due to complications from the craniopharyngioma he had lived with since he was 5. Ben wrote a eulogy—how many 19-year-olds need to do this? The power of this tribute needed to be shared more widely, I said. Why not consider publishing this, too? Our local paper was interested in doing just this. He reminded me it was his friend, his voice, and his decision.
At 19, Ben’s story is his to tell. Being an active participant in his life helped me find my voice, describing my perspectives on health, health care, disability, inclusion, and advocacy through writing. Now, he is teaching me that it is time to pass the baton to him. I am the family stakeholder, but he is the one with the lived experience from which we can all benefit. Ben, your story has always been yours, not mine. Please share it, on your own terms, for all of us to read. We will all be worse off without it.
Corresponding Author: A. Rani Elwy, PhD, Department of Psychiatry and Human Behavior, Warren Alpert Medical School, Brown University, Box G-BH, Providence, RI 02912 (firstname.lastname@example.org).
Additional Contributions: I thank my son Ben, and the family of Harry Clark, for providing permission to share this story.
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Elwy AR. Finding His Voice. JAMA. 2020;324(11):1039–1040. doi:10.1001/jama.2020.16334
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