“I Want to Die but They Won’t Let Me” – 28-Year-Old Man Living with Sickle Cell Anemia Painfully Cries

We are all created in the image and likeness of the Almighty, and in His eyes, we are equal. For the past five months, my thoughts have been consumed by the idea of my own death. I’ve tried to maintain a facade of strength, but the pain is gradually tearing away that mask......Read The Full Article>>.....Read The Full Article>>

This marks the first time in 26 years that I’ve chosen to reveal my vulnerability, deciding to seek peace, even if unconventional, in the afterworld. Though my decision may seem strange to my people, culture, and country’s laws, I’m confronted with the choice of enduring unbearable pain that affects every fiber of my being.

Having lived with sickle cell disease for over two decades, I’ve become familiar with pain as an unwelcome constant. However, since April last year, my life has undergone a profound transformation, and even the pain I thought I knew has become a daily shock.

Despite exhausting all efforts to alleviate the pain, I find myself clinging to the final option – euthanasia, often termed mercy killing. This became part of my considerations during a severe pain episode while residing with my cousin in Kasarani. I vividly recall enduring six hours of excruciating pain, with nurses struggling to locate my veins.

Following that ordeal, I delved into researching euthanasia, immersing myself in countless YouTube videos and extensive online materials on the subject. Although Kenya doesn’t permit this choice, I contacted the Association for the Right to Die with Dignity in Belgium, receiving a positive response and initiating the process. However, I face opposition from those around me; I navigate this journey alone.

Joe, 28, diagnosed with sickle cell at two, faces the debilitating impacts of the disease. His recent decision to pursue euthanasia, sparked by unbearable pain, has created a stark divide among those close to him. Despite Kenya’s legal restrictions, he reached out to Belgium’s Association for the Right to Die with Dignity, encountering support but facing opposition from his local doctors.

Even his mother, discovering his intentions through a Facebook post, is disappointed and insists on being part of any decision about his journey to Belgium. Mudukiza grapples with the weight of his choice and the reluctance of those around him to accept it.

The revelation of my sickle cell disease came when I transitioned to high school, leaving the protective cocoon of my mother’s white lie. Adjusting to boarding school life proved challenging; I struggled to adhere to my medication routine, leading to a decline in my health. Eventually, I switched to a boarding school near my village, where my battles with pain intensified, often keeping me away from classes.

In this new environment, my peers lacked understanding of sickle cell, and their misconceptions led to hurtful labels like “devil worshipper” and accusations of cult involvement. Initially, the emotional toll was heavy, but over time, I grew resilient, caring less about their unfounded judgments. Despite numerous absences due to health crises, I persevered to reach university, pursuing English and Literature against my father’s wish for me to become a teacher.

I also pursued a course in Film and Media, exploring my passion for journalism. Teaching brought fulfillment, but my health compelled me to quit, redirecting my focus to another passion – drama. A defining moment in my career came in 2019 when I authored a play narrating my life and those of fellow sickle cell patients. Proudly staged by Kapsabet Boys High School students, it remains a significant achievement in my journey.

As a father, long before my illness took its toll, I was filled with energy and a passion for community service. Growing up isolated from society due to my condition, I developed a strong desire to help others. During my community work, I encountered children whom I felt needed my support, leading to the legal adoption of five kids in addition to my biological child.

My children are aware of my health struggles, and their presence during my crises provides a sense of responsibility and purpose. However, I’m uncertain about their reaction when they discover my decision. The thought of their response weighs heavily on my mind, as they have been a source of strength and purpose throughout my challenging journey.

Living with sickle cell presents a peculiar daily struggle – waking up and going to bed fatigued, regardless of activity. During a crisis, the pain is indescribable; it’s like someone tearing off my skin and inserting broken glass into my veins. The agony robs me of speech; attempting to talk feels like chewing and swallowing razor blades, making communication an excruciating experience.

In these moments, I find solace in silent observation or sleep, as bone-deep pain disrupts coherent thinking and productivity. Opioids offer a brief respite, numbing the pain, but the temporary relief raises concerns about sustained use despite being a prescription drug. Adhering to a six-hour interval for opioid doses provides a fleeting sense of relaxation, albeit within the limitations of medication.

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