How Vision Loss Helped Me See the World in a New Light
In my dreams I was always healthy. In my dreams I could still see, I could drive at night, I could devour books with impunity, and I could pursue goals without constraint. In my dreams I was confident, smiling, and happy. And, for a very brief moment every morning when I woke up, my dreams were real. Then I would blink and rub my eyes and the normal blurriness of sleep would not abate and the darkness of my new reality would descend upon me.
My story is about getting hit with NAION in 2018 and being unwittingly transformed overnight from a healthy 50-year-old into a guy who faced blindness. My story is about an abrupt transition from hopping around the world buying companies to contemplating a life with dark glasses and a white cane. My story is about surgery, about expensive and experimental medicines, about endless doctor’s appointments, eye tests, MRIs, and hyperbaric chambers. My story was initially about fear, sadness, darkness, loss, depression, and loneliness. But my story became one of acceptance, adjustment, happiness, and hope. My story transitioned from bleak to bright after finding, partnering with, and leveraging a medical team that helped me be a fighter against a foe I couldn’t see, in a ring I had never been in before, and in a fight I didn't feel like fighting.
When you are diagnosed with a sickness, at a profound level, you immediately and unsurreptitiously transition from order to chaos. With a few quiet words and concerned looks from your doctor, the life you thought you controlled is replaced with a life you know nothing about. And in this tumultuous state of fear and confusion, you grasp for anything that might provide a tenuous link to the control, predictability, understanding, and certainty you had before. You search the Internet, you read statistics, you do regression analysis to try and predict outcomes for your life, you scour archives, and you answer questions with more questions. But the more work you do, the more lost you get. And the more lost you get, the more depressed and distracted you become. Life basically stops—and you hope and pray it is only on pause.
I was lost in this sea of confusion and fear when I first was introduced to Dr. Shannon Beres and Dr. Joyce Liao. I had read about Joyce when I was told my sight problems might be due to vascular culprits after an MRI had thankfully ruled out a brain tumor. And, when I was able to consult with Joyce so quickly, I felt like I had been thrown a life raft. I do life-science private equity for a career—which means I get paid to assess the validity of scientists, of doctors, of innovators, and of transformative medical advancements. Armed with this perspective, I feel comfortable in saying that Joyce is elite, a star amongst stars. Period. While she is gifted in understanding disease processes and paths, she is equally talented at applying her knowledge to innovative constructs that can advance treatment and understanding. In other words, she doesn’t just do what she has been trained to do; she applies critical thinking and novel pathways to try and lift up the quality of care she delivers. And she does all of this with a collegial demeanor that belies her world-renowned status.
Within one meeting, I was a friend, not a patient, of Joyce’s. We shared ideas; we discussed research. And through this friendship, she helped me accept the new reality of my health and then she worked with me to make adjustments to my life—with an informed and specialized perspective on what I could do and not do, what I should expect, and what would be surprising. Through all of this, she encouraged me to get back to a new normal—one where anxiety about blindness didn’t impede my personal and professional goals and aspirations. The relationship with Joyce provided me the solace that I desperately needed at the most uncertain time in my life.
NAION changed me. It acutely showed me that I am getting older and that my body and my health are not going to last forever. It exposed me to true vulnerability—to something that is uninfluenced by the drive, motivation, and output that have propelled me forward, effected outcomes, and shaped my life. It forced me to accept my limitations and to lean on others to do what I could not do by myself. And it provided me with invaluable perspective about the wonders of life that result from staring down fear and fortunately emerging on the right side of a possible outcome—alive, functioning, and happy.
I remember very early after my diagnosis seeing a blind man sitting with his sight dog in the lobby of the Byers clinic. I asked Shannon what had caused his blindness and she told me NAION had. My blood pressure shot up, my heart raced, and I secretly thought to myself, “I would rather die than be blind.” I no longer feel that way. Joyce, Shannon, and this disease have allowed me to focus on the health I still have and not dwell on the sight I have lost. They have allowed me to attack my world with the wonder of getting a second chance, but at the same time be grounded in the realization that unfair things happen to people regardless of how hard they try or how relentlessly they pursue their goals. And as I look around, I am aware of how everyone is dealing with these unfair things in one way or another. For the first time in my life, I truly understand empathy. And I am truly awed by the gift of health and life.
Sometimes I dream scary, dark dreams. I wake up frozen in fear and darkness. And then, in a moment of lightness, I blink and I see. And it is wonderful. My life is wonderful. And I am fortunate.
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To learn more about NAION research and how you can support this work, contact Melanie Erasmus.