Beyond the Surface by Jessica Long is a powerful and relatable memoir that resonated deeply with me, even though I am not disabled. I have a rare genetic disorder, Neurofibromatosis Type 1 (NF1), which is the most common genetic disorder, yet one that most people have never heard of. This condition, like Jessica’s experience, has made me grapple with feelings of anger, shame, bravery, and everything in between. Jessica’s journey to self-acceptance is one I found myself connecting with on many levels, and I found myself highlighting many of her words because they echoed my own experiences so closely. Her words resonated with me so much, because I could have written them myself, having experienced the same emotions and struggles.

Jessica’s story is not just about her incredible achievements as one of the most decorated athletes in history, but also about the emotional and psychological challenges of living with a visible difference. She writes candidly about the trauma of multiple surgeries and prosthetics, as well as the anger, resentment, and insecurity of trying to find her place in a world that often views those with disabilities as less than whole. Her words, “I didn’t want to be special; I wanted to be normal,” struck a chord with me, as I’ve also struggled with the desire to blend in while dealing with the challenges of my condition.

My disorder, Neurofibromatosis Type 1 affects people in various ways, from visible tumors and disfigurements to less obvious but sometimes significant symptoms. Like Jessica, I’ve had to navigate a world that doesn’t always understand or accept those who are different. Some people with NF1 have visible signs and face significant discrimination, while others, like myself, have manifestations that are not very noticeable. I’ve been fortunate that my condition is relatively mild and invisible to outsiders, but that could change, bringing with it a whole plethora of complications. Jessica’s acknowledgment of her visible difference and her determination to embrace it rather than hide it is both inspiring and empowering.

Because my body can’t produce neurofibromin correctly, cells may divide and replicate excessively, leading to tumor formation. NF (which includes all three types) is characterized by the uncontrolled growth of tumors along the nervous system. It can lead to severe disfigurement, deformity, deafness, blindness, brain tumors, cancer, death, shortened life expectancy, learning disabilities, scoliosis, bone abnormalities, short stature, an oversized head, and much more. The condition is widely varied, affecting everyone differently from mild to severe. Like Jessica, I understand the complexities of feeling different but wanting to be normal.

Jessica’s story is not just about her incredible achievements as a decorated athlete but about her struggles with identity, self-worth, and the challenges of being seen as “less than whole” by society. Her words about not being a victim to circumstances and the importance of harnessing self-love are powerful. Over the past year, I’ve also become an advocate, using my voice and sharing my story—a journey I once wanted to keep hidden. Jessica’s journey has inspired me to continue speaking out, not just for myself but for others who might feel the same way. She reminded me that we never know who is listening or who we might be inspiring and this is how we create change and acceptance.

As you can see, Beyond the Surface is not just a memoir about overcoming physical challenges, but a profound exploration of the emotional journey to self-acceptance and a call to embrace our differences and find strength in them. Jessica Long’s story is a testament to the power of resilience, and her words offer comfort and inspiration to anyone facing their own battles. Her words about not being a victim to circumstances and the importance of harnessing self-love are powerful. Her experiences remind us that our worth isn’t defined by external achievements or how others see us. Instead, it comes from loving ourselves without judgment. I found her story not only inspirational but also a comforting reminder that we can all find strength and beauty in our uniqueness. This memoir will leave you with a sense of hope and a renewed belief in the importance of self-acceptance

Thank you to the publisher Sounds True Publishing for providing an advance reader copy via NetGalley