I haven’t written this story yet because it is so hard for me to tell, but this “story” is what inspires me to live life to the fullest every single day, and I hope it inspires you, too.
If you’ve read any of my previous blogs, you’re aware that I am the oldest of three children in my family. My two brothers, Sean and Christian, and I were all adopted at birth by my amazing mother and father. My youngest brother, Christian, and I are biologically related. Four years ago, at the age of fourteen, he was diagnosed with Retinitis Pigmentosa 2 (RP2) which is a genetic retinal disorder that causes progressive vision loss. Our retinal brain cells control our day and night vision. RP2 destroys these brain cells. Christian is lucky, relatively, because the disease has affected his night vision at this point more than his day vision. Christian is legally blind right now. He’ll never drive a car, he can’t read basic print, he had to give up contact sports and it’s extremely difficult for him to look at a computer. Sometimes it’s hard for him to cross the street if the sun is too bright. He also can’t see the street lights. At the start of this year, he began to learn braille. But being legally blind does afford him special accommodations at school which is a positive. There is no cure for this disease, though there is research being conducted in the area of genetics and stem cell therapies. This research might help my brother, but time is of the essence. In due course, he could become totally blind. The best case for him is that his vision will be like looking through the hole of a straw.
My parents first told me about Christian’s condition after my college’s home basketball season opener tournament my freshman year. After starting off our season 2-0 and being named to the All-Tournament Team, I could not wait to celebrate with my parents who I had not seen since the season had started. We went out to dinner and, after putting our orders in, my Mom turned to me and said, “We have something to tell you”. For as long as I live, I will never forget how those six words sounded…
From that day on Christian was no longer just my “little brother”. RP2 is a genetic disorder, so when I came home for Thanksgiving break that year I had to be tested for the disease as well. When the doctor came back with the findings and told my family that my test results were negative, Christian looked at me with one of the sincerest smiles, a smile I will never forget, and said, “Faith, I am so happy that you don’t have to go through this”. Words cannot describe the heartfelt look my brother had on his face. At times, I consider Christian to be the oldest. He is so selfless and has never taken his disability as an obstacle in his life. I have never heard him complain nor ask why this awful thing had to happen to him – which is an amazing, but also sometimes a scary thing to think about. How can be so calm about his disease and his future?
Being the oldest and having to watch my brother’s vision progressively get worse and worse is so hard. Hard in the sense that, because I am the oldest sibling, it is my job to take care and look out for my younger siblings. Truthfully, Christian is the one who takes care of me. The summer before I left for my senior year of college, I worked up the courage to ask him if he was scared about completely losing his vision one day. He looked at me and said, “Faith, there are people in this world who are getting killed over their religions, beliefs, and sexuality…I can’t be upset when we have been given such a blessed life.”
I aspire to live every day like Christian – whether it be on or off the court. He is right. We have been given such a blessed life that it is so wrong not to enjoy every single second we have on this Earth with each other. One of my favorite quotes that reminds me of all that my brother has taught me is, “No matter what happens in life, be good to people. Being good to people is a wonderful legacy to leave behind.” Not only is Christian just my younger brother, but he is my light, my encouragement, and my best friend. Even though, he may not always be able to see all of the beauty in the world, he knows it’s there and intends to be thankful for it all. Because of him, I witness something beautiful every day.
What truly matters in this world goes beyond sight! As Christian has learned from the incredible support of organizations like the New York State Commission for the Blind and NABA (Northeastern Association of the Blind at Albany, NY), and especially the vision impaired friends he has made — and I’ll quote him — “I may be losing my sight, but I’ll never lose my vision.”