Six Words

I first met my retinal specialist, Dr. Geeta Lalwani, on August 5, 2013. It was a day I thought would define the rest of my life.

In the thirteen years since, my annual eye exams have come to feel more like visits with an old friend. They usually follow a familiar script.

"Nice to see you, Chris."

A warm smile. A careful examination. A few quiet minutes as she studies the scans her technician has taken of my eyes. Then the familiar conversation about another promising treatment that might one day slow or prevent vision loss for someone else, but not for me.

For me, those conversations have changed over the years. We spend very little time talking about preventing further vision loss. As the saying goes, that ship has sailed.

Some of those promising therapies are now a reality. They're just too late for me.

At my most recent appointment, Dr. Lalwani greeted me with the same caring smile. We talked for a few minutes before she turned to her computer.

As she clicked through my records, I said, "Too bad I wasn't first seeing you now. You'd have something to help me."

I expected her to smile and say, "I know. I wish I did, Chris."

She didn't.

Instead, she said quietly, "I might have something for you."

Six words I had come to believe I would never hear from her.

I sat quietly, unsure what to say, as she reviewed my medical records, including the results of genetic testing I had undergone four years earlier.

From that first day in her office in 2013, Dr. Lalwani had suspected that my condition wasn't the more common age-related form of macular degeneration. I was diagnosed unusually young, and my brother had experienced similar vision loss, pointing instead to a hereditary cause.

The genetic testing confirmed what she had long believed. My vision loss was linked to mutations in a gene called ABCA4, a hereditary retinal disease. At the time, the diagnosis provided answers, but not much reason for optimism. There were no treatments that could change the course of the disease, and I assumed there never would be.

After finishing her review of my records, she turned to face me and began describing a clinical trial that I might be eligible for. The treatment showed promise not only for slowing further vision loss, but potentially for restoring some of what had already been lost.

The possibility of regaining even a small part of my vision stopped me cold.

That had never been an option.

And suddenly, there it was. Far from a sure thing, and still at least a year away.

"But how is that even possible?" I asked. "Those cells are dead, right?"

"Yes," she said. "But we would transplant new RPE cells under the retina."

It would be reasonable to expect that I would be excited by the prospect. Instead, I simply nodded and agreed to come back in January to explore it further.

Now, several days later, there is an uneasy feeling somewhere deep inside me that has me questioning whether this is the right path.

Certainly, the thought of surgery on my retina doesn't excite me. It's easy to make a list of everything that could go wrong, from pain and discomfort to losing what little central vision I have left, or even damaging my peripheral vision. The last thing I need is to end up worse than I am today.

But that isn't it.

Then I think back to those early years after my diagnosis. The retinal injections. The endless doctor visits. The uncertainty. The drama of the whole experience. It was frightening and more than a little exhausting. I can't say I'm eager to step back into that world, knowing that, in the end, I might be no better off than I am today.

Maybe even worse.

But that isn't it either.

How many times over the last thirteen years have I thought about stopping my vision loss, let alone restoring what I'd already lost? But that was never an option. It wasn't that long ago that Dr. Lalwani had written a letter on my behalf describing my vision loss as permanent. Now, she was asking me to consider the possibility that it might not be.

The truth is, I no longer even know what good vision looks like. In many ways, I live in a different world than I did thirteen years ago. Along the way, my limitations have taught me a great deal about myself and about the world I inhabit.

Somewhere along the way, vision loss stopped being simply something that happened to me.

It became part of the story I tell myself about who I am.

The funny thing about stories is that we rarely realize we're living inside one until we finally step outside it.

Last summer, I attended a silent retreat at the Rocky Mountain Ecodharma Center in Ward, Colorado. Most of those five days were spent alone, on the land, sleeping in my backpacking tent and sitting beside a mountain stream, doing very little except listening to the water and trying to follow the retreat's simple instruction: "just be."

On one of my last days there, I picked up a smooth, rust-colored stone that had rested at the bottom of that stream beside my campsite. Over countless years, the water had worn away its rough edges and reshaped it into something altogether different. As I held it in my hand, I couldn't help but see a reflection of my own life.

Vision loss had done much the same to me. It had changed me in ways I never would have chosen, softening some edges, exposing others, teaching lessons I could not have learned any other way.

In my earlier essay, "The Stone in the Stream," I wrote about that stone:

"Strong. Worn. Weathered and shaped by time. It didn't resist the current. It didn't cling to what it used to be. It simply allowed itself to be changed. And in that change, there was beauty. There was resilience."

At the time, I thought the lesson of that stone was about accepting the changes vision loss had brought into my life.

But maybe the bigger lesson was not to cling to any version of myself.

The stone wasn't beautiful because it had found its final form. It was beautiful because it allowed itself to be shaped by the current. Maybe people aren't so different. Maybe there is no final version of ourselves to protect. Maybe there is only the life in front of us, asking us to change once again.

Now my doctor was telling me that my future might be different from the one I had learned to accept. Even expect.

And it felt uncomfortable. Foreign.

It's an odd thing to admit, considering I spent more than half a century with what I once thought of as normal vision.

Maybe the real lesson of that stone is that change was never up to the stone.

That was always the work of the current.

Maybe that's the real lesson of life.