A Career I Never Planned, a Mission I Never Expected

By Tom Perski   

When I began my career in low vision rehabilitation more than four decades ago, the world was a very different place. Resources for people with vision loss were limited, information was difficult to find, and families facing a diagnosis such as Stargardt disease often had more questions than answers.

There was no internet to connect people with similar experiences, no social media to bring families together, and few opportunities to hear from others who understood what they were experiencing. Too often, people were left to navigate an unfamiliar and frightening world on their own.

But I knew something about that world. I had been introduced to it at just 18, when I was diagnosed with Stargardt Macular Dystrophy.

I understood the uncertainty, unanswered questions, and fear of not knowing what the future might hold. At that age, I had no idea how profoundly my diagnosis would shape my life. I was simply a young man trying to understand what was happening to me and wondering whether my dreams were still possible.

Looking back, I can see how that uncertain beginning became the foundation for a life I never could have anticipated. My personal experience with vision loss meant dropping out of college, giving up driving, and as a much older student, returning to college and graduate school as a legally blind student. This journey eventually led me into the developing field of low vision rehabilitation, where I discovered I had something meaningful to contribute.

Over the next four decades, I helped establish programs serving hundreds of children and students with visual impairments, assisted thousands of adults with macular degeneration, worked alongside dedicated professionals, and became increasingly involved in improving the lives of people living with vision loss.

As my career progressed, colleagues began describing my contributions as pioneering work. Invitations to lecture at major professional conferences followed. My work took me throughout the United States and Canada, as well as to Europe and Australia, where I shared ideas, exchanged knowledge, and advocated for individuals whose needs were too often overlooked.

Those professional experiences were tremendously rewarding, but some of the work closest to my heart happened far from conference podiums.

During evenings and weekends, after fulfilling my full-time responsibilities at the low vision clinic, I devoted countless hours to volunteer work helping individuals and families affected by Stargardt disease and other inherited macular dystrophies.

Long before digital communication made it easy to connect with others, I wanted parents to have reliable information, young people to understand they were not alone, and families to recognize that vision loss did not necessarily mean giving up their hopes and dreams for the future.

With the assistance of Dr. Gerald Fishman, Professor of Ophthalmology at the University of Illinois, along with four of his distinguished colleagues, and referrals from the National Eye Institute, I helped connect families with information, support, and a better understanding of these conditions. I did this entirely as a volunteer, driven by the belief that families facing these challenges deserved guidance and reassurance.

Perhaps my commitment grew from remembering what it felt like to be 18 and face an uncertain future of my own. I understood how much it could mean to discover that someone else had traveled a similar road and found a way forward. Sometimes, simply knowing you are not alone can make all the difference.

Whatever the reason, my work had become more than a profession. It had become a passion, and over time, that passion grew into my life's mission.

In my later years, I began reflecting on a career that had taken me places I could never have imagined when I started out. I considered writing a memoir about the programs I had helped build, the professional milestones I had achieved, the outstanding people I had worked alongside, and the thousands of lives I had touched through my work.

Anyone familiar with my career might have expected that to be the focus of my book. My colleagues certainly did. They often told me, “Your career was legendary. Everybody in the field is familiar with your work.”

“But that isn't the book I wrote. The story I wanted to tell was a very different one.”

Before the lectures, conferences, international travels, and professional recognition, there was a teenager struggling to understand what a diagnosis of Stargardt disease meant for his future. There was a young man filled with questions, facing unexpected challenges, and wondering where he belonged in a world that suddenly seemed different.

That was the story I wanted to tell.

My memoir, There's No Vision Like Low Vision, chronicles that personal journey, including the struggles, fears, unexpected opportunities, remarkable people, and experiences that ultimately shaped my life. It is not really a story about professional achievements. It is about finding direction when the road ahead seems uncertain and discovering possibilities that once appeared unimaginable. But there is something I wish every family understood when first hearing this diagnosis.

A diagnosis tells you something important about a person's eyes. It does not tell you everything about that person's future.

When I was 18, I couldn't have imagined the life I would eventually lead. I didn't know how many people I would meet, how many families I would help, or how many extraordinary opportunities would emerge from circumstances I initially struggled to understand.

I certainly never imagined that my own experience with vision loss would become a source of encouragement and connection for thousands of others. If someone had described that future to the young man I was then, there is no way I would have believed it.

That is why I hope individuals, parents, and families reading or listening to my story will recognize that, although worrying about the future is natural, it is equally important to leave room for possibilities they cannot yet imagine.

I hope young people living with Stargardt disease will discover that they can pursue their interests, develop their abilities, establish their independence, and find meaningful ways to contribute to the world.

Most importantly, I hope individuals and families understand that they do not have to figure everything out today. There is time to learn, adjust, discover resources, and connect with people who understand what they are experiencing.

My journey began with a diagnosis I didn't understand and a future I couldn't predict. It eventually became a career, a mission, and a lifelong commitment to helping others find their way.

Now, by sharing that journey, I hope to offer encouragement to those just beginning their own. Because sometimes, hearing how someone else found a way forward can help us begin to believe that we can, too.

I'd be honored if my story could make a difference in yours.

 

Check out Tom Perski's memoir, There’s No Vision Like Low Vision: Living With and Serving Those with Macular Degeneration And Stargardt Macular Dystrophy, available on Audible and Amazon.