Finding Serenity

May 7, 2018

I thought, it didn’t make much sense.  Driving two hours each way for a 45 minute long walk! But then, we haven’t been in Wellfleet’s Bay Wildlife Sanctuary for almost 10 months and we heard its nostalgic calling.  All of us.

“Ocean, Ocean”  Robert kept repeating.

“Ocean is still closed for swimming’, we told him, “but we can walk on Cape cod”

“Cape Cod” said Robert.

We weren’t sure if he understood where we were planning to go, so Jan added, “It is Audubon, like Moose Hill or Stony Brook.”

“Audubon, Audubon”  Robert confirmed his choice in his distorted speech that  squeezed each word into one strange syllable.

So we went.  we stopped on the way in Burger King.  As Robert finished his meal, he started screaming.

I didn’t know why he was screaming, but I regretted our excursion. He patted his cheeks, freezing in place from time to time and he screamed.

That didn’t last long, but Jan and I were momentarily paralyzed.  Robert screams always hurt.  They hurt double because we believe that Robert is also hurting.  with a lot of patience Jan encouraged Robert to get into the car. We thought for a 30 seconds what to do and we decided to continue driving to Wellfleet.  Robert was calm, although I noticed somewhat different breathing pattern.  He was holding air a little longer than usually and then exhaled with some effort. It seemed that acid reflux was at fault. I worried.

But then, there was the Sanctuary. The air got warmer and we could take our jackets off. There was balsamic smell of pines. There was this  silence that became a backdrop to birds songs.  There was the air devoid of any allergens.  We passed only one  group of elderly visitors who stopped to decide which way to go.  There were parts of the forest destroyed by water and wind  from severe storms or hurricanes. There was resigned silence of passing.  There were parts of the forest untouched by strong forces of nature breathing calmly their expectation for a better summer.  There was a view of dunes sticking out of the water. It was a high tide and the boardwalk was submerged.  We took a few minutes to look at the vast, open space of the bay before deciding to turn into Goose Pond Trail.  We walked carrying our jackets through the stillness of the warm afternoon.We didn’t break the tranquility of that walk with any unnecessary sound.

The following week, we asked Robert where he wanted to go for a walk.  We gave him a few options.

“Cape Cod” he said.

So we drove two hours again and again Robert screamed after the meal in Burger King.  And then  there was the Sanctuary.

We chose different trail, and Robert was fine with it. He walked mostly ahead of us, but kept coming back for his dad who stayed behind or waiting for me lagging after both of them.

We stopped many times to look at the Bay and a few times to take pictures. But mostly we  breathed and walked, letting the air infuse our bodies and permeate our souls.

As we found them.

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Pariah

May 2, 2018

It hurts when I see others treating Robert like pariah.  It  hurts even more when I see his peers with disabilities treating him badly.  I rarely have opportunity to notice that, as I don’t watch Robert in his programs.  I only see him getting on the van that takes him to the Day Program. ” Don’t sit here, go there” , says the girl as Robert noticing his regular seat being taken moves to another seat, next to that girl.  She doesn’t want him to be next to her.  “Go to the back.”  Robert doesn’t know what to do.  He looks to the back seat, but as the girl moves her purse closer, he understands this gesture as a permission to sit next to her.  She is not happy.  “Why are you ordering him around? ”  I ask, but my question disappears in the air as nobody pays attention to it.  As I close the door I see Robert placing himself next to the girl.  But that is not the end.  The van is not moving.  I look back and I see Robert walking to the back row. He seems resigned but I wonder if that sort of treatment doesn’t leave an effect on him.

Sadly, I noticed that a few times before.  Moreover, no matter how full is the van, he is always sitting alone.  Nobody is next to him.  I tried to explain that.  With the seasonal allergies, there were times when he was sneezing a lot. Who wants to be in a proximity  of person with such affliction?  But, he has not been sneezing in a few months now.  At least, I have not noticed that. So is there something I don’t know about Robert, that THEY, his transportation companions, are aware of?