Bringing Out The Best(Disease)

This blog is about a book in the making.

Bringing Out The Best

_{How Losing Sight Has Given Me Vision}

That’s the title of the book that I’m going to write (or something like that). It’s about a book that I’ve been thinking about for a while and one that is going to take a lot of time to do well. It’s going to be a book that will change lives. I’m calling my shot. But for now, you get this blog post.

This blog is about the condition that I live with, or as I like to see it, the condition that lives with me. Not just that. It’s about how this condition has shaped who I am in the best way possible. It’s about how I see the prospect of going blind as a blessing instead of a burden and how that perspective has taken shape in these first 26 years of life. Before I dive into this blog head first, let me slow down and provide some context for those of you not familiar with what I’m talking about.

I have a condition called Best Disease. It’s a genetic condition that affects the macula, a small portion of the retina that is responsible for central vision. The disease causes progressive degeneration of the macula and therefore, progressive deterioration of central sight. You can read more about it here, but to make a long story short, I’m going blind and there’s not much I can do about it.

I was diagnosed with Best Disease as a child and I’ve had my fair share of ups and downs. The episodes that I experience are unpredictable and characterized by sudden losses of sight. Treatment can control the damage but it doesn’t restore what’s lost. It’s an unfortunate a challenging reality to live with, but it’s far from unfortunate. That last sentence is a bold statement that I’ve only come to believe in recent years. For those dealing with sight loss maybe you can relate, but maybe you can’t (yet). For those of you without sight loss, I know that you’re struggling with something, because we all are. No matter what your struggle, I want you to replace mine with yours as you read on.

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When I first noticed my sight loss, I was 10 years old. I want to make it very clear that from that point on, I struggled a lot. Throughout childhood, I felt disadvantaged, I felt confused and I felt sorry for myself. It was clear that the condition I was facing was out of my control and that was hard to handle. I struggled to make adjustments in school (using magnifiers, extra time on tests, etc.), I had to give up certain sports (enough baseballs to the face will make you think twice) and I navigated life with a brittle ego. The uncertain nature of what I was dealing with left me anxious around the clock. Each night when I went to bed, I worried that I would wake up blind and each morning, I worried about how I would get through the day in front of me. In those days, Best Disease was a burden heavier than I knew how to handle.

“It’s not what you look at that matters, it’s what you see.”

Henry David Thoreau

I began to find a groove when I went to high school. I was fortunate enough to have my sight stabilize, I had a good group of friends, I could channel energy into sports that didn’t require high levels of hand-eye coordination (football, pole vault and javelin), I excelled with academics and I stopped thinking so much about my eyes. Looking back, I made a conscious effort to dissociate who I was from the very thing that I would come to embrace: my sight, or lack thereof. I graduated high school, went to college and speed bumps aside, things went well. I poured endless amounts of effort into school and ended up graduating with a 4.0 GPA, great GRE scores and a pick of whatever DPT (doctor of physical therapy) program that I wanted. Following applications and interviews, I chose Drexel University and I was insanely excited to start. The only thing that stood between me and graduate school was one summer. I hadn’t had an episode of sight loss in almost four years, what could go wrong? If you’re still reading, you can probably guess.

Just weeks before I moved to Philadelphia and started graduate school, I lost quite a bit of sight (you can read more about that here). In those weeks leading up to school, I was consumed by doubt, anxiety, darkness and hopelessness. I was lost and I felt as if the world was collapsing in around me. I felt the full weight of the reality that I was slowly going blind and that scared the crap out of me. I ended up deciding to go to school anyway and to make a long story short, it ended up being the best decision of my life (you can read more about that here). One of the best things that happened was meeting the girl who changed my life and is now my wife. Beyond that, graduate school was the place where I stepped into who I am and trusting God with all of my heart. I’ll save the details for the book, but it was this time in my life where I came to believe, with everything that I am, that everything happens for a reason. I graduated school and looked back to understand how the winding and difficult road had led me to an amazing place; one where I knew who I was, understood what I wanted and felt confident how I was supposed to change the world for people(s).

“Sometimes when you’re in a dark place you think you’ve been buried, but you’ve actually been planted.”

Christine Caine

I look back at the challenging road I’ve been on and I understand that I’ve been planted. I’ve been given the gift of unrelenting struggle and that’s a gift because there is no strength without struggle; there is no light without darkness. What I’ve lost in sight, I’ve gained in vision and I wouldn’t trade that for the world. Living with the prospect of going blind isn’t easy, but it’s created an excellent environment for accelerated growth. The consistent struggle that I face has afforded me incredible perspective, significant strength and a deep drive to help other people. I understand that we can’t control what life throws at us, but we can always and entirely control how we respond. Going blind has given me innumerable opportunities to choose and respond well to less than ideal life circumstances. It’s great practice for life.

“Between stimulus and response there is a space. In that space is our power to choose our response. In our response lies our growth and our freedom.”

Viktor Frankl

I’m grateful for the circumstances I’m facing because without them, I wouldn’t be who I am, and I like that person. The struggles that I’ve encountered have been a source of immense strength and I truly feel strong. My loss of sight has connected me with incredible people and given me awesome opportunities to encourage others. That’s what I feel called to do. To tell you that it’s only through struggle that we find strength and that whatever you’re dealing with, it’s happening on purpose for a purpose, even if you can’t see it just yet (even if you can’t see well, like me).

What I have lost in sight, I’ve gained in vision.

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When I first decided to openly share the things I was struggling with (circa 2017 with this first ever blog), I was scared of what people would think of me. Sharing my writing (and therefore myself) with the world is sometimes daunting, but always rewarding. Being vulnerable is a skill that I’ve been intentional about developing and the hope is that these words will reach somebody (even just one person) who needs light during a dark time. If that’s you, know that you’re not alone and that I’m here for you (reach out to me and let me prove I’m serious). Before I end this blog, I want to extend a big thank you to everyone who supports me, encourages me and loves me. You all mean the world to me and I couldn’t be more grateful to have you in my life. I also wouldn’t be who I am without my biggest source of love and encouragement, God. There aren’t enough words to describe the magnitude of meaning that faith brings to my life.

“The only thing worse than being blind is having sight but no vision.”

Helen Keller

Thank you for taking the time to read.

I’ll let you know when the book is done!

Joe Rinaldi

IG: @joearinaldi

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