My name is Jessie and I have an incurable degenerative eye disease called retinitis pigmentosa (RP). I was diagnosed with RP when I was only seven years old – and learning how to accept my condition has been an ongoing and confusing process.
When I was seven, I didn’t understand the gravity of my disease or what it meant for my life, and I was able to live carefree. It wasn’t until I was fourteen years old when my parents talked in more detail about it with me, and I will never forget how it felt to have them sit me down, and tell me that I was slowly going blind.
To say that my world was turned completely upside would be a massive understatement. I instantly lost all hope for my future, turned to drugs and alcohol, and started drowning in self-loathing thoughts and habits. I didn’t believe that people who were blind could be productive members of society, let alone people who were happy, and I adopted the mindset that I would be better off dead than blind.
Finding my power
It took me years to develop any sort of self-confidence, however I eventually realized the power there was in being different. Learning to embrace this disease hasn’t been easy, but I’ve learned that not only am I able to have a life despite being legally blind, but I am capable of having an absolutely incredible life.
Due to this condition, I am now able to bring awareness to a community of people who are ridiculously misrepresented in society, while raising money for blindness research. I have been the president for the Foundation Fighting Blindness’ Los Angeles chapter for the past few years, and I have been fortunate enough to personally raise over $230,000 in order to help find a cure for RP, and other retinal diseases.
I have realized that you can’t always control what happens to you in life, but you can control how you react to it – and I have made the conscious decision to be positive and optimistic. One day I might be completely blind, and even though this still scares me beyond belief, I know that despite having no sight, I will always have vision.
At the end of the day, life is what you make it, and I choose to make mine amazing no matter what.
About the author
Jessie Wolinsky is a disability advocate, podcaster, fundraiser for Foundation Fighting Blindness and co-founder of Sight Club, a community of visually impaired young adults in Los Angeles.
To keep up with her, find her on Instagram at @JessWo, @BadassBlindBabe and @JessiesSightSavers. You can also follow her on TikTok.