Greta Baier
"Zip lining." That's what Greta considers the bravest thing she's ever done. As someone with Nemaline Myopathy, a rare genetic disorder causing muscle weakness, the two-and-a-half-hour process to complete this adventure exemplifies her determination to live life to the fullest.
Early Life
Born and raised in Manhattan, Greta grew up as an only child in the city environment. Her earliest memory is attending the Maleficent movie premiere around age four, an experience that sparked her love for entertainment and social events. Greta's parents, Lynn and Pete, fostered her independence and curiosity from a young age. Their approach to parenting emphasized normalcy and inclusion, encouraging Greta to explore the world around her just like any other kid in the city.
Threads of Wisdom
Living with Nemaline Myopathy has profoundly shaped Greta's perspective on life. While she acknowledges the challenges, she also recognizes the unique opportunities her condition has provided, particularly in terms of community. The friendships she's formed with others who share similar experiences have become a cornerstone of her life.
Greta's best friend, who also has a disability, plays a crucial role in her life. Their shared experiences create a bond of understanding that Greta finds invaluable. This friendship highlights the importance of connection within the disability community, offering support and companionship that others might not fully comprehend.
Her view on her condition has evolved over time. As a child, Greta thought about the possibility of a cure, but her perspective has shifted as she's grown older. She's come to accept and even embrace her situation, focusing on living her best life rather than waiting for a medical breakthrough.
Greta's daily life involves using a ventilator, wheelchair, and needing assistance with tasks like coughing, dressing, and personal care. However, she doesn't let these needs define or limit her. Instead, she's developed a strong drive for independence, constantly seeking ways to navigate life on her terms.
Reflections
Greta hopes her legacy will be changing perceptions about people with disabilities. She's passionate about demonstrating that disabled individuals can lead fulfilling, "normal" lives that don't require pity or special treatment. Through her actions and attitude, she strives to challenge societal assumptions about disability.
Despite her physical limitations, Greta maintains an active lifestyle. She enjoys shopping, attending concerts, and hanging out with friends. Recently, she's ventured into podcasting, showcasing her ability to adapt and pursue new interests.
Looking ahead, Greta dreams of traveling more, particularly to far-flung destinations like Japan. While travel presents additional logistical challenges due to her medical needs, it's a goal she's determined to pursue, embodying her refusal to let her condition dictate the boundaries of her experiences.
Greta's advice to others in similar situations reflects her resilient philosophy: don't be afraid to put yourself out there. She encourages others to approach people, be social, and not let fear of perception hold them back. This advice stems from her own experiences of sometimes being overlooked or misunderstood in social settings due to her disability.
Throughout our conversation, Greta's spirit of adventure and determination shines through. Her story isn't just about living with Nemaline Myopathy; it's about embracing life with enthusiasm and courage, constantly pushing the boundaries of what's possible. Greta's journey serves as a powerful reminder that disability doesn't define a person—it's merely one aspect of a rich, complex life filled with challenges, triumphs, and everyday joys.
