Off Script

Andy and I are in Hawaii for three weeks. We arranged a home exchange here last year and were able to do it again. Our borrowed house is on a hill overlooking the Pacific Ocean and we swim every morning at Kauna Oa beach, a few minutes’ drive away.

In the quiet and peace of this calm environment, I’m allowing my mind to go to forbidden places. Being a full time caregiver for my husband with Parkinson’s- these 19 years- I have learned to keep away from certain thoughts and to cut short some feelings because they are dangerous. They are hard. They hurt.

But here, on this island, I have mustered the courage to go off script- meaning to those dangerous places. I want to discover my own way through and share with my readers so none of us get stuck believing a partial experience.

To start, I’d like to revisit the first paragraph I just wrote.

“Andy and I are in Hawaii for three weeks.” Yes.

“We arranged a home exchange here last year and were able to do it again.” No.

I arranged a home exchange. Andy had nothing to do with it.

Here’s the thing. My husband and I used to be a team. Most successful couples are. We no longer resemble the team we used to be, because he lives with Parkinson’s and can no longer initiate, plan, organize or execute.

I attempt to live a life with him that he will also enjoy, but I never really know.

My role has grown to be oversized. I often feel like the supreme leader in our relationship and I don’t like that or feel at ease with that- but if I don’t somehow embrace it, then we won’t function, much less thrive.

Today’s off script subject is: “What is it like to lose equality with your partner, because of a disease?”

“How can that ever be okay?”

In a word, it isn’t. It isn’t ever okay. I’ve learned that whenever something important (like equality with my husband) is lost, although IT will never be okay, I will be okay.

In time, after I do face the horror of it and feel the pain of it, I naturally-in time- discover an end to the grief and a way to transform our reality into something else.

Nothing is static. We are all fluid, and as sure as heaven and hell, our relationship to our situation changes.

If I can be aware enough, then my creativity kicks in and wiggles around in me until what felt unbearable becomes one more aspect of life that gets expressed as part of who I am.

I am not big enough to absorb all that occurs and make it okay, but I am big enough to let it be part of me and in doing so, I am okay.

In fact, I become more.
More aware, more understanding, more empathetic, more compassionate, more able to live with the hard parts of my world because they have become part of me.