There are several unique experiences peculiar to living with Stargardt’s disease; some very personal and others played out quite publicly. Through these experiences I learn the truths that mould and guide my existence. Like most Stargardters, I recall needing to look at my classmates’ notes to get what was on the board at around the age of eight. After revolving through several Ophthalmologists in the Delta of Nigeria for over a year, my parents were told that I had unexplained irreversible sight loss. A diagnosis of Stargardt’s came almost two decades later when my youngest sister began to experience similar sight difficulties and my family relocated to the United Kingdom providing access to better health care.
Nothing changed at home after my diagnosis, I recall just before leaving for boarding school, kitted out with a binocular mounted on spectacles, having a conversation with my mother. She told me “You can achieve all you want, you just need to do it differently to everyone else”. Although my visual aids have changed with technological advancements over the years, the truth shared by my mother is applied unchanged to this day. At an early age, I learnt to set goals, be fiercely competitive and dedicated many hours into my work. It delivered huge academic and later career success. In 2005, I qualified as a Pharmacist fulfilling a prized dream and love every day of practice being of service to my patients more than a decade on.
Achieving goals through steely determination did little to address the social anxieties I experienced daily; the fear of failure and rejection because I am different. I would not disclose my visual impairment in social circles and would get anxious about not finding friends at social gatherings, or feeling quite inept with being unable to read the menu. My deliverance came through my spiritual awakening. My faith in God’s love allowed me to own my truth, “I am created perfect in every detail, including my mottled macular, and in my weakness a strength is at play”. From a place of self-confidence, I have created strong meaningful relationships in which support is offered and received. From this place of confidence, I live a purpose-driven life navigating the challenges of a world not designed with the sight-impaired in mind.