My Ancestry: My Introduction

Hello, I'm Amina Allah, and I want to share a significant journey that transformed my confusion and despair into clarity and understanding. As a 41-year-old woman who identifies as autistic, left-handed, and living with a rare disease, I have traversed a unique path filled with both challenges and victories. I have found strength in my diverse intellectual interests, including science, psychology, sociology, philosophy, and medicine. My passions also include writing music, poetry and literature, and I take pride in my role as a teacher. My latest project involves explaining the reasons behind my book on ancestry, a deeply personal narrative shaped by my experiences of misdiagnosis and eventual discovery. From childhood through early adulthood, I faced misdiagnoses that led to years of struggle. Despite my pain from a rare disease called Hypermobility Ehlers-Danlos Syndrome (hEDS), my symptoms were often dismissed as signs of mental illnesses. This misunderstanding led me through a 16-year journey in the educational and healthcare systems, which was meant to be enlightening but turned into an exhausting source of pain. During this difficult journey, I lost everything: my car, custody of my children, education, and nearly my own life.

The stigma surrounding mental health further complicated my situation. I was often perceived as "crazy" for speaking my truth. It felt as though I had become a target, with many trying to silence my claims about my condition and the words I express in my books. The prevailing mindset around me was like a fog that obscured their understanding of my experience, an invisible, debilitating illness that turned my world upside down.

In my quest for truth, I not only discovered my condition but also an intriguing ancestral connection to Ashkenazi Jewish, Edo, China Tokyo and Igbo lineages intertwined with historical tales as ancient as Noah’s Ark. This discovery profoundly affected my understanding of identity, culture, and belonging. The journey to uncover these truths, from Mount Horeb to encounters with medical professionals, has led me toward a kind of salvation wrapped in historical significance.

The Misdiagnosis: A Struggle for Clarity

My quest for clarity began in my early medical encounters. Healthcare professionals frequently linked my physical symptoms, like joint pain and fatigue, to emotional issues. This response left me feeling marginalized and invisible. Imagine enduring years of pain that made walking impossible, only to be told your suffering was all in your head. During this period, I faced social exclusion, as if sharing my reality marked me as a Foreigner. A World Health Organization survey reveals that over 60% of people with chronic illnesses encounter skepticism from family, friends, or healthcare providers. This statistic deeply resonates with my experience. Being labeled a "mental patient" shouldn't have defined me; instead, it obscured my reality and complicated my search for help. It erected a barrier between me and the care I urgently needed.

The Journey of Self-Diagnosis

Disillusioned by the medical system’s lack of understanding, I took charge of my own health. Driven by desperation, I spent countless of hours researching, visiting libraries, and combing through online databases, piecing together the puzzle of my symptoms, genetics, and potential family lineage connections. After 16 years, I diagnosed myself with Hypermobility Ehlers-Danlos Syndrome, a discovery that, instead of bringing relief, was met with skepticism. This diagnosis turned my understanding of my life on its head. Hypermobility provided a name for the exhaustive list of symptoms I had endured, including frequent dislocations, pain and debilitating fatigue. However, this newfound clarity brought an additional challenge: I needed to explore my ancestral ties that shaped my identity.

Uncovering My Ancestry

In my research on hEDS, I found connections to Ashkenazi Jewish heritage and ancient tales linked to the Dead Sea. This journey allowed me to delve into my family history, my ancestry, and the essence of my identity. Historical accounts of endurance and resilience intertwined with my personal struggles, giving me a renewed sense of purpose.

I discovered that genetic predispositions like hEDS are significantly more common among Ashkenazi Jews, with studies indicating that about 1 in 250 individuals in this group carry the genetic markers for the condition. This understanding enriched my sense of identity and underscored the significance of my cultural heritage. Recognizing this lineage was pivotal, prompting me to share my story in my book about ancestry. My aim is to demonstrate how our backgrounds shape who we are and provide strength during life's challenges. my books embody resilience, self-discovery, and the vital importance of our histories.

Facing Persecution and Overcoming Adversity

Despite receiving a diagnosis, the challenges of being labeled as "crazy" did not diminish; they grew. Society's lack of sensitivity towards invisible illnesses and autistic adults led to legal battles and conflicts with law enforcement. My encounters with Mount Horeb Police and School, Beloit, UW, Dean, Marshfield, Cleveland Clinic, and others highlighted the societal issues surrounding mental health and invisible disabilities. Even those closest to me, friends, family, and numerous professionals often found it difficult to accept the reality of my experiences. This skepticism fueled my determination to share my story. Speaking out was essential for my healing and to illuminate the struggles faced by many in similar situations. I aimed not only to tell my story but to amplify other voices. The stigma linked to my past became a driving force for change, fostering understanding and awareness of invisible disabilities.

The Transformation of Pain into Purpose

Instead of allowing bitterness to take hold, I channeled my pain into motivation. My experiences reflect dark struggles that resonate with many but are often left unspoken. This journey has molded me into a champion for truth and empathy. Through my book, I strive to reveal the harsh realities associated with misdiagnosis while honoring the remarkable legacies interwoven throughout our histories. The pain related to my condition became a Painted canvas illustrating resilience and hope. I aim to inspire others to explore their ancestral stories and foster discussions around invisible disabilities. Our histories are not just backgrounds; they are vital to our identities and survival.

Wrapping it Up

I encourage you to delve into the themes of my books and reflect on the journey behind my words and songs. By understanding our histories, we can nurture empathy and compassion for ourselves and others, particularly those facing invisible illnesses. Purchasing my books and music supports my mission and aligns you with a broader movement to dismantle the stigma surrounding mental health and invisible disabilities. Together, we can promote dialogue, healing, and understanding. This journey is not just mine; it is a shared legacy ready to be uncovered. Let’s work together to dismantle the illusions that hold us back and create an inclusive world that values all differences, invisible or not.

In Conclusion

My path from misdiagnosis to ancestral discovery embodies courage, resilience, and the relentless pursuit of truth. It highlights the power of self-advocacy and the importance of understanding our roots. By sharing my experiences, I hope to inspire those who feel marginalized to find their voice and embrace their truth, exploring the intricate tapestry of their ancestry. Thank you for being part of my journey, may it encourage you to uncover the hidden legacies within your life. Your family history may hold the key to understanding not just who you are, but also who you could become.