photo by Alan Teller

I used to be a more prolific writer but lately I have been distracted by all that is going on around me and I thank those friends who have reached out. It has not been easy. But you knew that.
As promising as I thought the visit was a few weeks ago, as hopeful as I was that language would be somewhat functional, that is how opposite things are now.

Evan and I have had two visits, one has been blogged about in the previous post, and one on Father’s Day.  We brought lovely flowers and a bag of gifts, a New York Times baseball cap and two teeshirts:

There was no reaction to the beautiful flowers. There has never been. I pulled the gifts out of the bag and showed him the cap thinking he could wear it to shield his eyes when there are outside visits.

Would you like it? I asked.

Eventually he said, No.

I put the hat on.

Look at this cute Teeshirt, I said holding up the one with the crossword puzzle and remarking that Evan constructs similar puzzles.

Would you like it? I asked.

Yes.

And then I read the shirt that had words down the back about truth.

The truth is hard.
The truth is hidden.
The truth must be pursued.
The truth is hard to hear.
The truth is rarely simple
The truth isn’t obvious.
The truth is necessary.
The truth can’t be glossed over.
The truth has no agenda.
The truth can’t be manufactured.
The truth doesn’t take sides.
The truth isn’t red or blue.
The truth is hard to accept.
The truth pulls no punches.
The truth is powerful.
The truth is under attack.
The truth is worth defending.
The truth requires taking a stand.
The truth is more important now than ever.

~The New York Times

Would you like this shirt? I asked.
Yes, he said. And each time I asked a question there was more and more time passing with deafening silence.

In all the visits we have had Robert has not shown recognition or engagement with his son. That is painful for a child at any age, even those who say, I won’t take it personally.

For most of the half hour visit I held Robert’s hand. His grip is surprising and I wonder how it survived.
And during this visit, he never took his eyes off me, his gaze was locked on mine.

Nonverbal communication is a challenge and an art.

One of our family jokes was that Robert never stopped talking. He’d go on and on, embellishing, slapping words on top of words, using puns, building upon meaning, creating pictures and tomes.

And I would lose my mind and say, could you please stop talking! This happened so often.

He’d want to know what we were having for dinner after he finished lunch. He wanted to know when Evan was doing food shopping. He would sit reading menu after take-out menu and decide he was in the mood for a burger from the diner. Or Indian. Or Chinese. Or Italian. Or Greek. He was able to read. He was able to speak. He was able to make his needs known.

Was.

Now, his eyes are locked on mine and never leave, my hand is captured like a wayward animal in the teeth of a trap.

I had a few more things I needed to do: the main thing was to administer a genetic buccal swab test for the neurologist, from Invitae. I have been anxious for days over this responsibility. I have been feeling the pressure gnaw at me. I have been drowning in the what-ifs of a failed attempt. But here I was, kit in hand, dealing with two vials of fluid that were waiting for the incoming swab. Two vials that would be sent off to the lab via FedEx the next day. Two vials of cells holding DNA on the swabs that I would dig for in Robert’s mouth. (10 swipes on the lower gum line on each side. Screw the swab into the fluid-filled vials and shake ten times. Follow the packaging instructions.)

I told him what I was going to do, I asked his permission. He consented; I put on a glove and pulled his cheek away from his teeth and noted that it appeared that his teeth had been cleaned, and, his hair was cut, his eyebrows trimmed, he was shaved, he wasn’t wearing his glasses.

After that procedure was achieved and I held the prized DNA aloft, a new wave of anxiety washed over me, more what-ifs and ramifications. Each subtest is meant to sweep away the dust that has been veiling a diagnosis, the kind of fast-moving dementia that is formidable. The kind that has no cure. There is no cure for these strange and feared neurological conditions. Conditions that laugh in our faces, thumb their noses at us and snicker at the lack of funding.

All I can do is cringe. All I can do is send words to the Universe, positive thoughts, positive energy that other family members will not be affected by a bit of molecular information that can change a person’s life and go off like a time bomb.

Words are what we have that make us human. That bridge souls with communication. That make us real.

Without words the world is bereft, no matter what language we may speak.

I remember so many trips abroad when we traveled summer after summer to parts unknown, where one needed to carry a small, pocket Berlitz dictionary. I remember feeling a terrible sense of isolation despite the fact that I was traveling with my partner and we were in it together. I remember making the bank teller laugh, when in Italian, I asked to change tears, pain, meaning dollars. Dolore. Dollari. I accented the wrong syllable. I laughed along. It was a moment.

I wish I were able to go to a bank teller and exchange my tears. I wish it were that simple.

The truth is, Robert is losing his words. And I don’t have a Berlitz book to figure out what he is thinking.

The truth is hard.
The truth is hidden.
The truth must be pursued.
The truth is hard to hear.
The truth is rarely simple
The truth isn’t obvious.
The truth is necessary.
The truth can’t be glossed over.
The truth has no agenda.
The truth can’t be manufactured.
The truth doesn’t take sides.
The truth isn’t red or blue.
The truth is hard to accept.
The truth pulls no punches.
The truth is powerful.
The truth is under attack.
The truth is worth defending.
The truth requires taking a stand.
The truth is more important now than ever.

 

 

 

📌The series starts here:
Part 1: And The Band Played On … a mother’s life, a daughter’s journey

The previous post is here

The next post is here