February is Retinitis Pigmentosa Awareness Minth. This post is dedicated to those living with RP.
I am living with retinitis pigmentosa— an extremely rare genetically inherited retinal disease that causes blindness. It affects 1 in 5,000 people worldwide, roughly two million people total, and only about 100,000 people across the United States. The symptoms vary for everyone who with this condition. For me, life is excruciatingly bright. Certain basic everyday things I can no longer do with ease. Bright colors and hues like yellow and white are not good for me anymore for the most part. Depending on how my condition is acting on a particular day, I’ll sit and not move around much. I’ve been known for “walking in slow motion” but that is because I have to be careful with every single step I take. For people on the outside looking in I may do things differently, but on the inside I am simply making adjustments to the world as I have to experience it.
Life is tough living with this condition. It is no secret I would not choose this life for anyone, not even those who consider me a villain in their life’s story. I would do anything to experience a life without this condition, but that is not a luxury life affords us. We cannot choose our suffering, but we choose our response and we ultimately choose how well we live. In the past year I have battled hopelessness and anger, anxiety and doubt, But I have also experienced joy and hope, peace and love, empathy and comfort.
This condition has helped me realize I have all I need.
Though my life is not how I anticipated it would be by this point, I have learned and experienced so much that has given me strength and a new perspective to endure what I once thought was impossible to find joy in. I have experienced the support and care of so many from family, friends, colleagues, and in between. I have experienced more of myselfand ultimately more of God. My life is summed up in fhe steadfast love of a good God. Because I am unashamedly loved and cared for by God, I can trust that I will be okay. God will send the people I need in my life to help me through this. He will remove all who mean me no good, and God is my help and my strength; on. Passages such as Isaiah 41:10 give me comfort that I do not have to be dismayed because my God is with me.
And He is with you too. Whom are we that we are afraid of anything when the God who made us and knows the outcome is with us? We have all we need.
“Do not fear, for I am with you, do not be afraid, for I am your God; I will strengthen you, I will help you, I will uphold you with my victorious right hand.”
Isaiah 41:10
Until next time, continue to stay guided by grace,
Tra
Guided by Grace 