On a sunny May afternoon in 2002, a 19-year-old individual embarked on a memorable trip to Westport Beach in Washington with friends. Little did they know that this typical Monday would begin a long, uphill battle. Early-onset macular degeneration was soon going to severely reduce their quality of life.
The 42-year-old main character is forced to deal with the day-to-day struggles of a vision-stealing genetic disorder. Their vision is on par with that of an 80-year-old. This quick loss of vision has had a deep impact on their lives and relationships around the world. On that serendipitous beach day, they lay down on a blanket. They were hoping the sun and sea would do wonders to recharge their spirits. Their eyesight continued to deteriorate.
Needless to say, after hanging out for almost an hour just enjoying the tropical beach vibes, my very compliant subject decided it was time to have a little fun. Their crowning achievement was a synchronized double digit cartwheel routine that left them all in gales of laughter as they crumbled to the floor. As it turns out, their friends thought the display was hilarious. They jested that performing 13 cartwheels in the opposite direction would do the trick to help unscramble their brain. This jovial atmosphere would soon stand in stark relief to the profound medical ordeal that awaited him.
Early on, physicians misdiagnosed them as having sun damage to their retinas, blaming their vision loss on overexposure. The recovery time did not appear to take long – no more than two or three weeks. Yet this was only the beginning of a years-long uphill battle. During the past 7 years, the subject had several other milder episodes of vision loss. Even though the service was thought to be so successful that all would flourish, things didn’t really turn out that way.
Years later, the subject’s vision kept getting worse. The early-onset macular degeneration brought anxiety and upheaval into their world, as it robbed them of their anticipated future plans. This ultimately resulted in life-altering decisions, such as scheduling the birth via C-section because of the fear of losing one’s sight while delivering. The effects of this rare condition have been equally physical and emotional, as it has affected nearly every facet of their lives.
Despite these challenges, the subject remains resilient. These individuals have become masters at making the world work for them, using a plethora of techniques to accomplish day-to-day tasks despite failing vision. Support from friends and family is key to keeping them encouraged.