Skip to content

Waiting

We are waiting. There is a date on the calendar now — within the week. Deep brain stimulation surgery, again.

A year ago, we believed we were moving into a new chapter. The first DBS procedure (Lee pictured right before being wheeled into surgery) was meant to widenIMG_3927 our world. Instead, the lead missed the target. There are phrases you never expect to hear in your own life. “Misplacement” is one of them.

What followed was not dramatic. It was incremental. Symptoms worsened. Fatigue deepened. Confidence thinned. There is something uniquely destabilizing about taking a decisive step forward only to discover you are still standing at the beginning — perhaps even a few paces behind it.

This past year has made our world smaller. We travel less. We leave earlier. We weigh every commitment against the cost of the following day. Some days feel like careful negotiations with a body that refuses to honor prior agreements.

There has been anxiety, of course. Surgery is never casual, particularly the second time. There are statistics and clinical assurances, and then there is your own kitchen table. They are not the same thing. There has also been grief — not theatrical, just steady — for the momentum we thought we were entering.

And yet, this year has not been defined only by narrowing.

IMG_4544Lee has held his newest granddaughter for the first time. He has stood on a local tennis court watching his grandson from out of town connect cleanly with a forehand, the sound of the ball sharp and familiar. Over the holidays, he sat trackside as four Chicago grandkids raced go-karts in determined circles, their laughter louder than the engines. These moments are not small. They are not consolation prizes. They are the architecture of a life.

Good days still arrive without explanation. A steady morning. An afternoon where concentration holds. An evening when conversation stretches comfortably and fatigue does not interrupt the story. The unpredictability works both ways; surprising steadiness can be as inexplicable as crashing exhaustion. We no longer ask why. We take what is offered.

Waiting sharpens awareness. We notice the generosity of friends who adjust plans without fanfare. We notice the relief of an ordinary errand accomplished without strain. We notice how much of life still fits inside a narrower frame.

There is hope. We would not be doing this again without it. The surgeon believes the reward outweighs the risk. The technology has evolved. Experience has accumulated. All of that matters.

But hope at this stage is quieter than it once was. It is not a banner. It is a decision made deliberately, without guarantees.

We are choosing to believe that widening is still possible. We are choosing to pencil in small plans beyond the surgery date — a dinner in early spring, a lecture we would like to attend, a trip written lightly in the margin.

The future has never been certain. This year has simply made that more visible.

For now, we wait — honestly, carefully, with more appreciation than we might have had in easier years.

The world is smaller.

It is also, unexpectedly, sweeter.