Francine: Where We are Now

My beautiful bride of 17 years was taken to the emergency room at midnight of Easter Sunday. She was physically weak and having trouble with her memory.

At Tacoma General Hospital, they ran every test you could imagine. They even sent a sample of her spinal fluid to the Mayo Clinic. On May 5, we received the final diagnosis from the neurologist.

They are 98% certain that it is Creutzfeldt–Jakob disease. This is basically the highest percentage of certainty they can have, as you can only achieve 100% certainty by means of a brain autopsy.

This disease is fatal, and once symptoms appear, most of those afflicted die within months.

When we first received the diagnosis, Francine summed up the future this way: “O, my Jesus”. We will face the future together in love, walking eyes open as much as we can, forward.

On May 9, we moved Francine to hospice care.

Her decline has been shockingly fast. A month ago, she was hiking and writing. Now she cannot stand up unassisted, and she is largely nonverbal.

If you are the praying type, I ask that you do so.

This morning, as I was reading her some of Emily Dickinson’s poems, I was particularly struck by a line that I think captures Francine:

She dealt her pretty words like Blades –

I don’t know how to live without her. She is my life, my joy, my reason for wanting to be anything.

She made me better. She made me want to live up to the image of the man she saw in me. She challenged me. She loved me without reason or condition.

I don’t know how to live without her. I don’t know. She is my everything.

And now I see her slowly dying, her light and life trapped in a dying brain. Struggling to get out, to shout, to wail, to make herself heard. 

She knows what’s happening to her. She knows it, and when first she heard the news she resolved to face it with a quiet power and dignity. 

But sometimes, like today, the fear washes over her, the uncertainty of it, like a great tidal wave submerging her and dissolving her in wailing and lament and tears.

And all I can do is hold her and tell her that I know. I know what she’s facing. What we are facing. And I tell her that we are facing it together, but of course, she is sliding into the abyss, and I am helpless to stop it. 

We are on our last Camino, she and I. She is walking into the heavenly city, into the new Jerusalem, into the arms of our Lord. It should be a moment of hope and of joy. But right at this moment, the only thing I feel is loss.

The loss of the love of my life, of course, but also the loss she is experiencing. The woman who made her life with words, losing her words. The woman whose strength and determination took her walking across countries, losing that strength. The woman who selflessly gave herself in service to countless others, now forced to rely on the service of others.

She always embraced the Benedictine charism of hospitality, and now she must come to terms with that other pillar of Benedictine spirituality: humility. She is, step by inexorable step, losing everything that was her.