> My second chance at sight: A patient’s hopeful journey after optic nerve stroke
My second chance at sight
A patient’s hopeful journey after optic nerve stroke
The following story was written by our patient, Duke Rohlen, about his journey with non-arteritic anterior ischemic optic neuropathy (NAION), also known as optic nerve stroke (learn more about NAION on page 4).
In my dreams I was always healthy. In my dreams I could still see, drive at night, devour books with impunity, and 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. 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 2019 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 appointments, eye tests, MRI’s, and barometric 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, 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.
NAION provided me with invaluable perspective on 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 was lost in this sea of confusion and fear when I first met Drs. Shannon Beres and Joyce Liao. I had read about Joyce when I first heard 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 within a day of reaching out, I felt like I had been thrown a life raft. I work in 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 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. And she does all of this with a collegial demeanor that belies her world-renowned status. Within one meeting, I was a friend, not just a patient, of Joyce’s. We texted. We had calls. We shared ideas. We discussed research. And through this friendship, she helped me accept the new reality of my health. She worked with me to make the adjustments to my life – with an informed and specialized perspective on what I could and could not do, what I should expect, and what would be surprising. Most of all, 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 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 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 on 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. 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 defined endpoints. 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.
By DUKE ROHLEN