Appreciating the View

How often do you wake up in the morning and feel grateful that you can see the sunny sky outside your window, the toothbrush and toothpaste sitting by the sink next to your soap dish?  Are you feeling grateful walking into the kitchen, pouring yourself a cup of hot coffee, opening  the fridge and glancing at the shelves to see what you might want for breakfast, all in less than a few minutes? Do you even think about how easy it is for you to accomplish these tasks? 

How often do you feel you’re the luckiest person on earth checking text messages from your friends, looking at photos they sent you, reading the newspaper online, checking your online calendar for events and tasks of the day while having your morning coffee? 

Do you feel lucky driving yourself to work, weaving your car from lane to lane, looking around  at others during traffic stops? It’s so cumbersome to get stuck at the red lights, but do you say  to yourself: “I’m so lucky to be able to see the world around me?” 

I suspect most of us don’t walk around all day feeling grateful for our eyesight as I often do now, after reading Andrew Leland’s powerful memoir The Country of the Blind. Leland chronicled his journey into losing his eyesight, a bittersweet memoir of loss, self-reflection on  life’s priorities, resilience and hope. 

Andrew Leland, a grandson of the famous playwright Neil Simon, was diagnosed with retinitis  pigmentosa (RP), a medical condition in which the patient loses vision of the lateral fields slowly over the years, until he meets the criteria for blindness. Think of it as the narrowing of his field of vision, until all he can see is through a pin hole! Leland suspected he had some vision issues even as a teenager, walking into a tree or, unlike his friends, having difficulty getting out of a theater after a movie ended. After some formal testing, Leland was diagnosed with  RP when he was a college student. Instead of feeling absolute despair, Leland became intensively curious about blindness and went into deep research about his condition and the world of the blind. He believed his knowledge would better prepare him for that final stage when he would officially be considered blind.  

In his quest to understand how blind citizens function, Leland traveled extensively and met  many interesting people who have played important roles in improving the life of the blind. As he attended national conferences of different blindness organizations, he met many blind activists and learned about the additional political challenges they face, including racism and  sexual bias in blindness.

He lived for two weeks in a radical training center for the blind in Colorado during the COVID pandemic and experienced the many conflicts within the communities of the blind, with some feeling different but not disabled, while others continue to mourn their lost sense of importance and adequacy as a human  being. 

Through Leland’s memoir, I learned so much about blindness, the kind of education that  medical students are not taught in school. I suspect even most ophthalmologists do not have this deep knowledge about the world of the blind and the issues their patients face daily  beyond their vision changes. The lack of understanding about the different degrees of blindness has led to serious discrimination against the blind, including a much lower rate of employment  compared to the rest of the population and the underestimation of their capacity to be productive citizens. Most people probably don’t understand how blind people can enjoy museum exhibits or movies. Pity for the blind, stemming from the lack of knowledge, can further hurt these citizens emotionally.  

Many scientific inventions have helped blind people live meaningfully. I learned about the field expander goggles, and the Argus II device, a microchip implanted into the retina of patients  with RP that communicates with the cameras in the goggles that the patients wear. One of the latest inventions was the Bionic Sight device of Dr. Sheila Nirenberg at Cornell University, who studied the “neural code” of the eyes, that improved the light sensitivity of some of those with RP by twenty-  to a hundred-fold in a 2020 clinical trial. 

Among the most moving lessons from Leland’s memoir is the importance of the communities  around the blind, how they maintain their hope and joy due to the love and understanding of those who care for them. He told many tender stories about his relationships with his wife Lily and young son Oscar, how they cope with his condition and help him navigate  many daily tasks, not being embarrassed by him but showing him how love can ease  someone’s difficult journey through any illness or disability.  In fact, Leland showed how blind people can live an even more active life than those with vision who do not bother to look or see. He does not take his life or daily experience for granted; he does not anticipate the end of sight because he learns to focus on the present moments.  

Andrew Leland’s The Country of the Blind is witty, charming, moving, insightful and thought- provoking. The science behind the treatments to improve the life or eyesight of the blind is totally fascinating. He’s a master story teller who can describe a technical device with ease and simplicity. You will recognize many well-known blind people in his memoir, in science, music and literature. You will learn a lot, not just about blindness, but about being grateful for not having to navigate your world through darkness, without equating that with feeling pity for the blind. There’s a whole science of using a cane by blind citizens, of reading braille, and other forms of reading and seeing. From the book, you can gain insight about when to ask if a person with blindness would like your help, without making assumptions that they can’t be functional without it. The balance  between feeling pity and empathy is very delicate and thoughtful. 

 I am so grateful for Leland’s courage to chronicle his journey to blindness. I believe every  medical student and healthcare professional should read his memoir. It will make us better  physicians. I hope you will enjoy his memoir as much as I did.