In a world that often overlooks the significance of life’s small victories, there are those like Liz Persaud, former Program and Outreach Manager for Tools for Life (Georgia’s Assistive Technology Act Program) and the Pass It On Center (The National Assistive Technology Device Reutilization Coordination and Technical Assistance Center) at the Center for Inclusive Design and Innovation within the College of Design at Georgia Tech, who passionately reminds us to celebrate every moment, no matter how fleeting. Liz, a beacon of strength and resilience, shares her journey as a nationally recognized public speaker and advocate. Her story begins not unlike many, marked by the challenges of a rare neuromuscular disease. As we step into Spinal Muscular Atrophy Awareness month, Liz’s words serve as a testament to the transformative power of hope, community, and the unwavering determination to embrace life’s journey, no matter the obstacles. Join us in honoring Liz’s profound insights as we explore the depths of her experiences, triumphs, and enduring spirit.
I’m one of the few in my circle of friends who adores birthdays and embraces celebration! Bring on the music, good food, drinks, decorations, all the sparkles and glitter, the company of my loved ones, and of course, the cake! Planning my annual trip around the sun has become a cherished tradition, and I gladly take charge of it every year. My birthday is in January, so it’s a great way to kick off the new year. Typically for the rest of the 11 months, I hear from most people around me how they want a quiet birthday and don’t want to celebrate. When everyone is in this collective conversation, I always say, “I love birthdays! Life should be celebrated because it’s precious and goes by way too fast.”
So, where does this love of birthday celebrations stem from? my story starts not very different from many people I know living with various disabilities. I’ve had a rare neuromuscular disease that affects only one in 11,000 births since I was just over a year old. My parents, having lived in America for about six years at that time, noticed my physical development wasn’t the same as my older siblings. This is when my life embarked on what I often refer to as a “medical rollercoaster.”
After a battery of cognitive and physical tests, including an invasive muscle biopsy, in the early winter of 1980, I was diagnosed with Spinal Muscular Atrophy Type 2 (SMA). Most all the doctors told my parents that I would not live beyond the age of two and that they should take me home and prepare to give me the most comfortable life in my remaining months. But my parents refused to accept this fate. In that pivotal moment, they said, “This isn’t an option.” Their unwavering determination laid the foundation for my zest for life celebrations, reminding me that every moment is precious, and every birthday is a reason to celebrate.
My parents are from Guyana, South America. In the early 70s, they made the decision to move to this country to pursue the “American dream,” access better education and job opportunities, and secure a brighter future for our family. It wasn’t an easy decision, considering they’re both from large, close families and each grew up in small villages where most everyone knew each other. When I reflect on the magnitude of their decision, gratitude fills my heart. I wouldn’t be where I am today were it not for their courage in making those difficult choices. It’s clear where I get my drive and resilience.
One of the neurologists that performed the tests that ultimately led to my diagnosis told my parents I passed them all. This wasn’t true, but his point was more significant than they could’ve imagined at that moment. He told them I was curious, funny, quite a “talker”, and energetic. He even said that I would do well in school, live independently, and one day fall in love. This was all said about a little girl under two years old! That moment became a pivotal point in our lives. That doctor gave my parents hope, and they took that newfound hope and moved forward in life. Every single decision they made about my health, education, and overall well-being was backed by that optimism. I owe the strength to press forward, even in the face of challenges, to the hope instilled in me by my parents. It remains an enduring source of inspiration, driving me toward a future filled with possibilities.
Having lived with SMA my entire life is what I’ve always known. Navigating my education, the path to my career, and overwhelmingly complex medical history are integral parts of my journey. People often commend my strength and wonder how they would cope with the obstacles I face. It isn’t always easy, but this is the only life I’ve known, and it has shaped who I am today. As we celebrate Spinal Muscular Atrophy Awareness in August, it’s important to recognize that telling my story about this journey wouldn’t be possible without the myriad of experiences I’ve endured.
Since I was a little girl, I’ve always noticed and acknowledged people who look like me. Making eye contact and smiling at other disabled people, especially those who use wheelchairs, has always been important to me. Many people have been taught not to stare at people with disabilities. Still, I would argue that avoiding eye contact can lead to a sense of invisibility and can be detrimental to one’s self-esteem. I’ve been singled out for looking different, bombarded with inappropriate intimate questions, and even touched by strangers. These experiences have emphasized the significance of finding a like-minded community. As an adult, I’m constantly paying attention to my environment, looking for people that look like me, especially seeking out brown women with physical disabilities.
My social circle has always profoundly affected my life, and as I get older, that circle has become smaller yet more meaningful. Community, specifically the disability community, and even more so the neuromuscular disability community, has been a vital part of my personal growth over the past few years. This was especially true during the isolating times of the COVID-19 pandemic. This sense of community has been invaluable, especially in my professional career, where, for example, advocating for working from home has been an ongoing battle. I’ll never forget how before the pandemic and for many years, explaining the benefits of working from home, for instance, easier access for going to the bathroom, reliable transportation, and the comfort of working from an adjustable bed, often resulted in backlash and extra demands on my workload. I had to prove myself beyond what my colleagues were required to do. At one point, I was even asked if I could undergo a catheter placement to spend more time in the office. This is when the community of people who look like you and share similar struggles can confirm your experiences. My friends with SMA check in on me often; they give solid advice during these battles when I want to give up. Their advice comes with examples of their own lived experiences that I’ve been able to share with leadership throughout my professional career. Ultimately, these shared struggles have helped my advocacy efforts and the efforts of many like me. My disabled friends validate my experiences. They continue to give me hope.
In December 2022, I retired from a 21-year-long career in the field of assistive technology. What an achievement for that little girl who was told she wouldn’t accomplish much in life! There aren’t many people living with SMA who are my age and have worked consistently in the same field for that long of a time span. I was excited to begin the next unwritten chapter of my life and finally get the much-deserved rest I desperately needed. However, shortly before retirement, I started not to feel well and was constantly fatigued. After numerous tests and scans, I was diagnosed with rectal cancer in June 2022. I was back on that unsettling medical rollercoaster. After surgery, I was given the reassuring news of an all-clear diagnosis in September 2022. I was excited to begin this new chapter in my life and celebrate the holidays after such a scary time in my life. Unfortunately, the victory over cancer was short-lived, and my celebrations were cut short because, in early 2023, I started to feel that familiar fatigue again. After more invasive tests this past April, I received news that my rectal cancer had returned with a vengeance. Unlike last year, my confidence has not been as high, and this time, everything has been unfolding in what I can only describe as slow motion. As I share my story with you, I await more answers and a treatment plan. I’ve already been told it will not be as easy as last year. Here I am, back on that medical rollercoaster, and this time, it feels like it’s going 85 miles an hour with constant ups and downs.
So, how do I manage each day amid this challenging ordeal? It’s far from easy; it’s among the most challenging battles I’ve faced. There’s an undeniable fear, and a fear for my devoted husband, who is not only my caregiver but also my best friend. I fear for the unknowns of the future. The weakness in my body is all too real, and I feel like I’m approaching my mental capacity. This part is tough because often, with a neuromuscular disability, relying on your brain power is vital for everyday survival. Additionally, it’s been exhausting building relationships with my medical team. For every doctor I feel there’s mutual respect, there are two more that don’t speak to me directly or speak to me in a childlike condescending tone. Recently, a doctor complimented my smile and told me that I have a cute face, then became defensive when I began to discuss the seriousness of my diagnosis. I’m drained from repeatedly explaining the details of SMA to my doctors and the complication of the amalgamation of having a neuromuscular disability and a cancer diagnosis, all while aging. Sometimes I feel like the medical field doesn’t know what to do with that little girl who was not supposed to survive past the age of two.
Though, there is still a little spark, and sometimes that’s all you need. That little spark is a strong force; it’s my hope. The power of community, the strength of self-advocacy, advocacy for others, a sense of humor, confidence, tenacity, and the gift of empathy are some of the tools that help me find my way when I feel lost. However, it’s important to acknowledge the truth that no matter how much positivity I may exude, it’s okay to be sad and angry about life’s unfairness. It’s important to feel what we feel, but it’s just as, if not more vital, to make sure those feelings aren’t all-consuming. Negative emotions of self-pity, harmful self-talk, and faltering confidence can easily creep up and invade our thoughts. This is where my community steps in, a lifeline of support that reminds me of the shared journey and the resilient spirit that unites us all.
These words, etched into my heart for over 25 years, are from my favorite song, “The Best of What’s Around,” by my favorite artist, the Dave Matthews Band: “Whatever tears at us, whatever holds us down, and if nothing can be done, we’ll make the best of what’s around.”
As we all journey forward, embracing your identity is important because it’s your truth. Revel in your uniqueness; it makes you the beautiful person you are precisely at this moment. Allow life’s experiences to serve as sparks that ignite crucial conversations, even when challenging and scary. Never forget that you are not alone. Remember that your presence holds significance, and your voice wields the power to bring about meaningful change. And most of all, never give up hope.