The Diagnosis Room - Keri Allen

The colors on the walls are foamy sea green and clean surgical white. They make for a calm doctor’s office, but they cannot calm my racing heart as I sit in the cold, clammy office chair awaiting the neurologist’s return.

Actually, no, I can’t even sit. I get up and pace. I find my eyes drawn out the window instead, to the uneven skyscrapers that form the skyline of Indianapolis - my sprawling, bustling city with its noise and pulsing movements, because this sight better reflects the waves of chaos churning in my soul.

This is what we came for.

10 years of symptoms. 10 years of heartbreak. 10 years of wondering what is happening.

This is our second round trying to figure out what is wrong with Dad.

We tried five years ago when his increasingly aggressive behavior was putting us all in danger. We tried a geriatric doctor, a radiologist, and a psychiatrist, only to be told what is so commonly said when the doctor doesn’t know: “He’s having a midlife crisis. He’s probably bipolar. He’s manic depressive. He’s late onset schizophrenia.” And my personal favorite, “There is nothing wrong with him.”

But there is something wrong. We all know it.

We just have to find the words to prove it.

And that is why we are here.

This is the fifth doctor’s office in six months. Before, we have seen a geriatric nurse practitioner, a geriatric doctor, a radiologist, and a local neurologist - only the last of which will admit anything at all is wrong with my father, who interacts and laughs like a five year old, even though he’s over fifty.

I remember the path that led us here, to this moment. The years of increasingly bizarre and inappropriate behavior. The times we wondered, who in the world is this person and where did the real Dad go?

The last straw was that trip to see his sisters, where he made such a scene that he almost got arrested. He probably should have been. But I thank heaven he is sitting in the next room instead of in a jail cell.

This third story office in the research hospital is a different experience altogether than the doctors visits before it: This time, Dad is pulled for testing and we, the family, wait here in the deceptively tranquil seafoam room. Waiting for the answers that we have prayed for so long and yet that none of us want to hear. Waiting for the crash of the wave.

The doctor returns. He is kind, quiet, and concerned. All things I longed to see before, but now that it’s actually happening, I realize I am feeling a panic rise in my chest. This is it. The tide is coming in, whether I’m ready or not. I brace myself.

“He has FTD. Frontotemporal Degeneration. There are three different kinds: a language variant, a behavioral variant, and a series of motor variants. But he very clearly has the behavioral.”

YES! Finally: a diagnosis.

Relief. Release. Victory! And then…

Disbelief. Desolation. Defeat.

No… This cannot be.

So what can we do? Now that we know what it is, what can we do?

“I’m so very sorry. There is not much we can do.”

Oh no.

“We won’t just leave you to care for him: we’ll be here to help. You’re not in this alone. But there is no treatment. And there is no cure.

The wave breaks. And I am broken in its wake.

My dad - my 57-year-old dad - is gone. Has been gone for years, actually. And sitting here in this room above the highrises, I’ve just realized he is never coming back.

The grief process begins.

Bittersweet isn’t quite strong enough a word for this emotion, here in the diagnosis room, the first of many finish lines along the FTD journey. Perhaps that feeling is like saltwater: it will wet your dry and thirsty mouth, but the sting makes it hard to swallow.

I love my dad. We worked so hard to get him here… But now that we are, I already find myself wishing it wasn’t so final, so concrete, so…. terminal.

And yet, my heart knows there is surely goodness and mercy even here:

This is what we came for. We have what we need now to care for him.

We have a diagnosis. We know what is wrong. We have tools to help us on the journey.

And we will never let FTD stop us from loving him.

So we shake off the seawater, we stand to our feet again, and we start learning how to brace better for the next wave.