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Learning About Darkness

Author: Marc Berger
June 2019
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Complete and utter darkness.
So dark, you can’t see your hand directly in front of your face. 
Black.

Nothing can prepare you for the experience of losing your ability to see. For those who have been able to see their whole lives, it is nearly impossible to understand what life must be like for those who have never seen at all. Last week, during our inaugural Verana Days, Verana Health participated in The Blind Cafe — a two hour event where we attempted to navigate a communal meal in total darkness. Our guides had been visually impaired for most of their lives; one lost his sight at the age of three due to a rare form of ocular cancer, and our other guide was born blind except for limited vision in one of her eyes. Both used a variety of adaptive techniques along with canes to make their way through the world. We, on the other hand, were fortunate to know the darkness was only temporary, and we could breathe easier knowing that in two hours, there would be light again.

Our goal for this exercise was to momentarily experience the challenges that the visually impaired face on a daily basis. Through Verana’s unique partnership with the American Academy of Ophthalmology, we are stewards of an unprecedented amount of clinical ophthalmic data, which we have the privilege of curating and analyzing in an effort to cure or delay the progression of a number of ophthalmic diseases. Our hope is that through our data-driven insights, physicians and life science companies are empowered to improve treatment courses and develop breakthrough new therapies for ophthalmic diseases.

As we went from the sighted world into the darkness, we were led by our blind ambassadors. It is impossible to see in front of you and you are completely dependent on the helping hand on your shoulder. As you feel your way around the table and ultimately into your chair, there is a feeling of relief and safety that you have made it this far. You attempt to adjust your eyes to the darkness but quickly realize that no matter how hard you try, eyes open or shut, there is no light.  Just complete darkness. You explore your lunch plate, unsure of anything you are being served. Is that a carrot or a potato? Rice or another grain? When someone shouts, “I just ate a full egg yolk!”, you decide that maybe you will skip lunch today.

“We, on the other hand, were fortunate to know the darkness was only temporary, and we could breathe easier knowing that in two hours, there would be light again.”

The Blind Cafe bills itself as a social change experience held in 100% darkness. A chance to break down social barriers and provide participants with a brief opportunity to feel the everyday challenges of those who are dealing with visual impairments. Our guides were not defined by their disability but rather possessed an enviable passion for life. Rather than shrink away from the challenge or cower in fear, they chose to work on mastering adaptive technologies to compensate for their inability to see. Something that for the visually-abled is as simple as crossing a busy San Francisco street requires acute listening skills for queues on the direction of moving cars or the willingness to ask passing strangers for help from someone who is not visually impaired. We learned about the various technologies that are being created to assist with these everyday tasks– technologies that we at Verana are developing as we work on tools to be incorporated into future clinical trials.

“Our hope is that through our data-driven insights, physicians and life science companies are empowered to improve treatment courses and develop breakthrough new therapies for ophthalmic diseases.”

As we concluded the meal and our guides lit a single candle to eliminate the darkness, the Verana Team took some time to process what we had just felt together as a community.

While we learned a lot about each other during this event, the single greatest takeaway from the experience was the reinforcement of our Company’s mission to empower physicians and accelerate research for patients, and the sense of urgency that must constantly drive our progress forward to prevent future sight loss.

About the Author

Marc Berger is Senior Vice President and General Counsel at Verana Health, where he is responsible for all of the company’s legal functions, including corporate, privacy, commercial contracting, health law, and intellectual property activities.