Is it Better to Have Seen and Lost, or Never to Have Seen At All?

Almost immediately after learning Finn was blind, I began asking myself this question all the time. As the old saying goes and, it’s better to have loved and lost than never to have loved at all. But, does the same hold true for a sense like vision?

People say to me all the time in learning of Finn’s blindness, “thankfully he was born this way and doesn’t know any different.” Often times I think that’s true, but other times I think life would be a lot easier for him if he had at least been given the opportunity to learn about the world through sight, even if only for a little while. For example, Finn will never truly know what a color is. How can you explain color? With so many things, I’m able to help Finn understand through touch, through sound, through smell. Colors are different. They can only be seen to be understood. The concept of the sky is another one. You can’t touch, smell or hear the sky. Sure, in time Finn will understand size and distance and he can start to grasp how vast and expansive the world and the sky is, but wouldn’t it be more fully grasped if he’d seen it even just once? At least that’s what I assume as a person born with vision.

In trying to answer this question of whether or not my son is “better off” having been born blind, I’ve asked the blind people I’ve come in contact with, and researched those who’ve shared their stories, exactly how they feel about it. The problem is, yes, they can answer this question better than I can, but they still have only their own experience to rely on, and obviously no one can ever experience both being born blind, and losing blindness later in life, in order to compare the two. Still, I have found that hearing these stories have gotten me closer to my answer.

Of those who lost their vision in childhood or later in life, many describe an overwhelming sense of loss and sadness that immediately followed. I met a man on vacation last summer walking with a cane and approached him by the pool. He lost his vision in his late teens due to a genetic disorder. He said the loss was extremely hard for him and took him years to work through and begin to cope. Hearing this made me so thankful that Finn would never have to go through that sense of loss, through the loss of a sense. However, this same man was vacationing with his family, having a wonderful time, told me of his successful career, and said that he’d gone on to live a very full life, one that by all indicators seemed not too different from my own. He mentioned that his sister had made a career out of helping those who are blind as a result of his diagnosis — she opened a center in the Southeast dedicated to aiding the blind find employment. Would she have chosen this path had her brother never become blind? Likely not. For that reason, among many others, he felt that his blindness had happened for a reason and he wouldn’t change it.

I read the biography of Ed Lucas, a blind sports broadcaster. He lost his vision at age 12 after an accident playing baseball. He, too, says he went through a dark time after losing his vision, but that he would never accept an offer to be given his vision back. He says he would never have gotten to create a lifelong career in baseball, the sport he loves, if he hadn’t lost his sight. Relying on his hearing to listen to games instead of watching them gave him a unique perspective and acuity that led him into broadcasting. He also says losing his vision changed the way he viewed the world and people — judging on character and integrity rather than outward appearance. He says in his book, “Though I didn’t realize it back then, God graced me with a wonderful gift: When he took the use of my eyes way, he allowed me to gain an even better vision of the world than I might have ever known.”

A blind architect was recently profiled on 60 Minutes and he echoed this sentiment. When he lost his vision as an adult he was already well into his career. He was asked by many people upon hearing of his vision loss, “Well, what are you going to do now that you can’t be an architect anymore?” He turned that negativity into personal drive to prove otherwise. He found a way to create raised, tactile drawings of buildings to discuss with colleagues new ideas, and went on to design buildings that feature raised dot flooring, echo location systems and other adaptive features for the visually impaired. Without losing his sight, he would never have taken his career in this new direction, nor had the impact he’s had on others with visual impairment who live or work in one of his buildings. He says he is even happier now than ever.

You’ll hear in interviews with any blind person the interviewer almost always ask, if you could have vision tomorrow would you take it? And almost always the answer, even among those who’ve had vision and lost it is, no. They say that losing their vision led to where and who they are today whether that be a stronger, less judgmental person; a new career path they might not have explored; meeting someone they otherwise would not have met; experiencing the world from a new perspective; or like the man by the pool, to influencing the life path of others. At first I thought this was crazy! How could you lose your sight and not want it back if given the opportunity? But, isn’t it so often true that the biggest losses in our life usually lead us to greater things and lessons we become thankful for, ones that we wouldn’t trade for anything?

Of those who have been blind since birth, a more rare experience, similarly, none of the ones I’ve heard from wish for sight. This is less surprising to me since I can grasp the idea of not wishing for something you’ve never had or known, but yet it’s still hard to fully understand. I saw an interview with one man who said he wished he could see his wife and children’s faces just once, but then he’d want to return to being blind after that image was captured in his memory. I found this to be so sweet, but again crazy! Why would you not want to keep the vision forever? Our friend, Miss H who I’ve talked about in previous blogs, was born blind as well. She’s told us of her wonderful childhood growing up in Australia where her parents treated her no differently from her siblings and as a result, how she felt no different. She was encouraged and supported in pursuing whatever dreams she had in life, just as her sighted siblings were. She went on to move to America on her own and succeed in a long career in music and now education. She, too, has said that she does not wish for a life with vision, or any other life than the one she has.

I had been coming at this from the view of, if a genie could grant you a wish to make your life easier, better wouldn’t you want that? But there I go again assuming a life without vision is lesser than one with, or that I could ever understand what it’s like to be blind. Of course my research has not been comprehensive and is based solely on subjective conversations or interviews in a short amount of time, but I have certainly seen a pattern amongst those I’ve heard from. Both groups, those born blind and those who have become blind, have adapted, thrived and excelled in this world that is strongly geared toward the life of a sighted person.

Patrick and I were visiting some friends and family in California not long ago and one of our friends was meeting Finn for the first time. We started talking a lot about his blindness and he said something that was so simple, yet so profound. He said that every single person in this world experiences life from their own, unique perspective. The way I experience the world is different from the way Patrick experiences the world because we are two completely different people even though we may both have all of our senses. The same holds true for Finn. Yes, he’s different. But, we all are. Every single one of us. And isn’t it exciting to watch and learn how Finn will experience the world in his own way? I really loved the way our friend was able to simplify something so complex. Why should we assume that Finn’s lack of vision makes his experience any less worthwhile, fulfilling, or complete than our own?

It’s pointless for me to worry about how Finn is going to learn about colors because he’ll learn about them in his own way. I know of a toddler at our local school for the blind who will only sit in a red chair at school because red is his favorite color. He’s completely blind and has been since birth, yet he has a favorite color, which I find so interesting. Maybe it’s because he’s heard his siblings or other kids talking about their favorite colors so he wants to have one too. Maybe it’s because he’s created his own idea of what red is and he likes that better than what his interpretation of blue or yellow is. Whatever the reason, he’s come to perceive color in his own way. Finn may not be able to see colors they way I do, but I’m not able to see things in the way he does either. That doesn’t mean either of us is at a deficit, it’s just our unique experience.

All of this is to say I’ve yet to come to a definitive conclusion to answer the question, is it better to have seen and lost, or never to have seen at all, but I’ve stopped wondering about it so much. Everyone’s experience is unique so most likely the answer is that neither is better than the other. Yes, I’m very thankful my son doesn’t have to experience a major loss by having vision and it slowly deteriorating to blindness, or go through the immediate sadness or depression that could potentially ensue from that loss. But, he’ll experience other losses and tragedies in his life as we all do at times. That’s life.  Regardless of how his blindness came to be, it makes Finn who he is. I love that he will only judge people based on integrity, character and heart without any aesthetic bias ever coming into play, as Ed Lucas pointed out. I love that he has no interest in screen time or television thus far and would much rather be outside playing than anything else. I love how excited and mesmerized by music he is at such a young age. I love how he recognizes my presence solely by my sound or touch. And every time I see my son let out a huge laugh or giggle, I am reminded at just how happy and thriving he is, vision or no vision.

So now it’s my turn to make you think I’m the crazy one. If there were a medical miracle created tomorrow that would give Finn vision, I honestly don’t think I’d pursue it, and Patrick agrees. It’s hard to say for sure, but we both think we’d hold off until Finn is older and could make that decision for himself. After hearing time and again from so many blind people that they don’t wish for vision even if it were an option for them, I have to take that to heart.  I have to stop thinking someone is crazy simply because I haven’t been in their shoes in order to understand their perspective. Finn’s blindness is not life threatening, it’s not even life altering in his case. It’s just his life, and has been from the start. Finn was born blind and that will give him the one-of-a-kind experience in life that he is meant to have. Just like those who lose their vision later in life have their own one-of-a-kind experience. Just as you do, just as I do. We all come into this world exactly the same — as different human beings with our own blank slate waiting to be filled in with unique life experiences, and isn’t that such a crazy beautiful thing?

My happy little guy