See saw, see saw

Up, down,

Back and forth

Do I fight and strive

to do what I love to do?

Do I surrender and move on

     to find a new passion

     that is not so difficult?

Pride resides in determination

     Don’t give in.

Peace dwells in acceptance.

  This is the new me.

How much do we become

what others perceive us to be?

Intelligent thoughts are trapped in here.

  People wait patiently

            trying to understand

I feel handicapped, mentally deficient.

 I’m still in here!

  The first touches of yellow

            like highlights in the leaves.

  A few gray strands

appearing in my hair.

  The leaves proclaiming

a new season.

  The gray hairs announcing

            a new season of my life.

  Both seasons, nature’s and my own,

           are welcome.

Plans being made

Meetings

The job goes on,

But I am gradually stepping back.

Preparing for the transition,

Doing the work,

            Fulfilling the responsibilities,

            But withdrawing from the passion.

This work I loved

  Left to someone else

Plans being made

Meetings

The job goes on,

But I am on a different path.

“Live in the moment,”

       Maria said to me.

In my head I knew what she meant,

       but not in my heart.

       I had my list to check off-

       Jobs to do,

       Plans to be made,

       Life to be organized.

Then a hiccup, a diagnosis,

an interruption in my plans.

       Music sounds sweeter to me now

                 I listen to the subtle harmonies.

                 It is more than background.

       Hot chocolate gives more pleasure.

       The fall leaves take my breath away.

I am more awake,

       more alive,

Alive in this moment.

My Bible Study leader said, “All of our circumstances are temporary.”

Isaiah 32: 4 says “…and the stammering tongue will be fluent and clear.’

I don’t remember having read that before. It just jumped off the page at me when I was reading something on the opposite page. When I read it I thought God was telling me I would be healed. I didn’t want to read any more of the context because I wanted to believe that God was speaking to me about a miracle. After I came a little closer to accepting what was happening, when God gave me peace about it, I went back to the verse and read what comes first in this chapter. It is talking about the Kingdom of Righteousness after the end times.

“A king will reign in righteousness.’

“Then the eyes of those who see will no longer be closed.

And the ears of those who hear will listen.

The mind of the rash will know and understand,

And the stammering tongue will be fluent and clear.”

This condition is only temporary: In Eternity all will be right.

The stammering tongue will be fluent and clear.

I will be singing songs.

I can wait.

Tears spring unexpected into my eyes.

They come unexpected

  when I try to read aloud.

  when I try to sing.

Memories of what I was good at,

Memories of what I enjoyed.

“You are distraught, depressed”

  my speech therapist says..

Isn’t it possible to be strong,

  Have faith,

And still do the hard work of grieving?

Diagnosis

Primary Progressive Aphasia. ”What is that?” No one has heard of it… no one that I talk to knows anyone who has lost his or her language. “We don’t even notice,” they used to say. “You sound just fine to me.”

          But every conversation is an effort. I hear the sentences in my head, but when I start to speak the words fade. Our amazing brain! The part of the brain where we prepare for speech has its own special function (or, in my case, malfunction). I can think thoughts in my head and carefully say them aloud. But if I think while I am speaking, the thoughts do not come.

          My speech surprises me. As the words leave my mouth, I think, “That’s weird. That didn’t sound right!” I repeat myself and can’t get the vowels right. I can answer questions or speak in sentences, but paragraphs, stories or long explanations elude me.

          I practice reading in short phrases with a slow pace, like my speech therapist taught me. I see the words. I hear them in my head. I remember enjoying reading out loud. I am surprised by what I hear coming out of my mouth. Is this me speaking so haltingly?

          What I read and what the doctors tell me is the scariest part: “progressive.” I don’t know exactly what that means for me. It could develop a number of ways. I could continue to lose my spoken language. I could even lose my language of thought –what would that be like? Dementia. I can’t imagine.

          Other diseases I have some knowledge of. This is new to me. I don’t have any examples.

I am going forward into the dark.