Understanding Spina Bifida: Personal Narratives and the Journey of Acceptance

Spina bifida is a complex and often challenging condition, impacting the lives of many individuals who must navigate surgeries, rehabilitation, and the ever-present stigma of living with a disability. In this article, we explore personal perspectives on living with spina bifida, from the challenges faced in childhood to the resilience developed over time.

The Experience of an Adult with Spina Bifida

At 50 years old with full-blown spina bifida and no sensation below the hips, the road has not been easy. Yes, the surgeries—some as numerous as 10 in a year—have caused pain and aches that are almost indescribable, but they also made me alive at 50 when the medical prognosis was grim.

Are You to Blame? No, I do not blame anyone for the condition or the surgeries. As an adult with spina bifida, my resilience has come from accepting my disability with faith and grace. Each day is a new challenge with its own set of obstacles, but every obstacle does not diminish the grace I receive to overcome it.

The medical journey was riddled with complications, one of which involved a severe infection after a surgery to straighten my spine with rods. Despite treatment, this infection lingered, leading to a draining wound that worsened with antibiotics for a Urinary Tract Infection. The doctors initially treated it as a pressure wound, only to discover it was related to the rods much later. This lack of understanding from the medical community is frustrating, but it has also fueled my determination to advocate for better communication and care.

The Mother's Perspective on Spina Bifida

Spina bifida is not just a personal struggle; it also affects the family. Take, for example, the story of a mother who was at a high risk for having a child with spina bifida due to her sister's life with the condition. She, however, was determined to avoid this outcome and had no doubt that she would have opted for an abortion if the tests had determined the presence of spina bifida.

During the 1970s, the mother underwent an amniocentesis without ultrasound and with minimal information, participating in an early trial for blood test information. With a risk of miscarriage as high as 1 in 100, she firmly believed she would not contemplate the loss of a healthy baby. Her resolve was unwavering, her decision to bring her child into the world despite the risk unforeseen.

This was the world my mother navigated, and when I was born, I had not been diagnosed with spina bifida at birth. Instead, a genetic disorder and a childhood injury ultimately led to my current condition. While I can walk, I rely heavily on a wheelchair, and I have undergone a series of surgeries. These life-altering challenges have always been met with a profound sense of resilience and determination.

Reflections on Acceptance and Resilience

No, living with spina bifida does not make me resent my parents or the doctors. What I resent is the lack of understanding and the failure to listen to the voices of those living with the condition. It is these failures that highlight the need for ongoing improvement in medical care and communication.

Reflecting on my life journey, I am struck by the resilience that has carried me through countless obstacles. Each day brings new challenges, but also new opportunities to grow and thrive. The journey has taught me that having faith and grace can lead to an awe-inspiring sense of purpose and strength.

Welcome to my story, a journey of understanding, acceptance, and resilience in the face of spina bifida.

Keywords: spina bifida, medical history, disability acceptance