Editor’s Note: February is Retinitis Pigmentosa (RP) Awareness Month. Be sure to read Retinitis Pigmentosa: Two Stories One Message Part 1 in our series.
Denying the Diagnosis
As a young teenager, I seemed as normal as my friends; roller skating around the neighborhood, talking to girlfriends over the phone in quiet whispers about boys, badgering my brother to play a game of chase, and dabbling with drawings to create my own artwork. But something was slowly changing within my body. Puberty – yes, of course! But there was a change that no one saw coming – sight loss.
Over a period of two years, my sight mysteriously began to fade. At first, it was easier to ignore the blurring of words on the classroom blackboard, passing it off as just another phase of adolescence. I was also painfully shy about the thought of being ‘different’ to the girls at school so I kept quiet about needing to wear glasses.
In my parents’ eagerness to glean any insight into my clumsiness at home, walking into a door or spilling a glass, they often peered from around corners to see how I was managing visual tasks. If they asked me direct questions about what I could see, it annoyed me to think there might be anything different to report since the last time they asked. My eyes were still a clear blue, seeing well on bright sunny days and not so well on overcast ones. I looked and felt normal in every other way. But the truth lurking behind my eyes was a different story. Within the thin layers of my retinas, diseased cells were forming and spreading along the nerve tunic of the eye. These light-sensitive cells were slowly dying, losing signal to the brain.
The Diagnosis: Retinitis Pigmentosa
I couldn’t ignore the diagnosis when it came. At seventeen, my family learned two new words I could hardly pronounce – Retinitis Pigmentosa (RP). The doctors had given their diagnosis and I was labeled “disabled.”
Could RP be a Gift?
That is how my story of Retinitis Pigmentosa began. Here is the “gift” that I couldn’t acknowledge at the time; RP has given me a different perspective on life. My life is certainly different but not necessarily worse due to this so-called “disability.” I eventually made friends with RP by accepting that my eye condition is just one aspect of who I am. There is so much more to my life as a mother, wife, friend, writer, gardener, traveler, mentor and educator.
While seeking practical adaptations for my home and writing studio, I found self-acceptance and the kind support from others; and I gradually learned that there are many ways in managing the challenges of sight loss. For me, RP is the reason why I can help my community embrace having low vision as a part of life, not as a barrier or stigma to be ashamed of.
A Beacon of Hope
People I meet are constantly amazed by watching a “blind” person going about life in a confident way. As I see it, the gift of RP is it allows me to be a beacon of hope to those who fear losing their sight. This was not who I imagined myself to be as a teenager. However, in my more mature years, I am extremely grateful to be seen as a ray of hope for anyone who needs that initial light of encouragement. With my peers at VisionAware, I found like-minded people who all support one another.
If you are new to RP, my most valuable suggestion is to encourage you to reach out to those who are on the journey, who understand the challenges, and who can share valuable insights as you tread and explore the new territory. With a willing heart and a practical approach to adaptation, you can discover the “gift” of RP too.
You don’t have to change the essence of who you are but you will need to change the way you do things to approach daily-life tasks in making them achievable with less sight. During RP awareness month, this may be the perfect time to start moving forward again towards your big picture-goals to grow RP strong!