Care Giving is a Two-Way Street

By: Saralee Perel

My husband Bob and I began a wondrous new journey. All because of a dream. We are now the happiest we have ever been, though it took years to reach this point.

The journey
Four years ago, quite literally overnight, I developed a permanently disabling spinal cord disorder. Bob became my round-the-clock caregiver. With our wonderful marriage of 25 years, we knew we'd cope beautifully. But we didn't.

Most of us will be caregivers in some way. By sharing our lessons, I'm hoping you won't need to wait as long as we did, to heal.

Nobody meant harm; nobody was to blame. But nobody was prepared for what lay ahead.

The honeymoon phase
After surgery, we were euphoric that I wasn't completely paralyzed. My neurologist called it, "the honeymoon phase." We knew it would last. Our entire marriage was a honeymoon. But soon, reality hit hard.   

Bob needed to dress me, clean me, and do every household chore. I felt so guilty. But I didn't tell him. Bob felt overwhelmed, but he didn't tell me.

Never wanting me to feel bad, he'd say, "It's nothing," when I'd thank him. Our roles became exclusively caregiver and sick person. "Where did husband and wife go?" I'd wonder -- to myself. The distance was evident in my dreams. Not once in four years, was Bob in any of them.

Coping with the disorder
Instead of reaching out to each other or friends or therapists, we metaphorically locked ourselves in self-made isolated emotional rooms. We'd have crying jags, but kept them barely audible  --  never wanting to break each others' hearts. If only we had cried together, we'd have mourned our loss and started to heal.

My self-esteem took a nose dive. Once an independent, self-assured woman, I became dependent and subservient. I was a burden. I constantly apologized for needing help. "I'm sorry I can't put my socks on by myself."

I longed to talk with Bob. But it seemed more loving not to. I desperately wanted to tell him what living in this defective body was like. I needed to share -- to be heard and understood. That's exactly what Bob needed too. 

There still is hope
Then a miracle happened. Recently, he said, "Last night was the first time I dreamed you were disabled." He became tearful. I touched his face. "It's fine to cry." Timidly I asked, "How did you feel?"

"The way I have all along. Protective." He hung his head. "And powerless to fix you."

"Nobody can." I kept my hand on his face -- so needing to touch him -- so needing to be touched. "It would help if you'd tell me how you're feeling." 

"It's hard. When I'm exhausted or my back hurts, you'll feel bad."

"I could rub your back." I held his hand like the lifeline it is. "I've never told you about feeling like a burden."

"I love taking care of you!" he said. "I want 'us' back."

"Oh, so do I."

"I think we're having a breakthrough." We were laughing through tears. Then he told me his dream.

The man of her dreams
"It was a cold day, but we were on a beach and we had to get to an island. I don't know why. There was a boat. I panicked." He knows -- no more boats for me. I have no balance. After a deep cleansing breath, he said, "A path appeared. We walked across on soil. I held my arms around you so you wouldn't fall and you held me for support."

We put our arms around each other, like in the dream, but now for emotional support. I said, "You made our path," I could barely get the precious words out, "on solid ground."

I had never felt anything more profound in my life.

And just as our roles had instantly changed that fateful day long ago, we were no longer caregiver and sick person. We were lovers and best friends.

Though Bob has always been the man of my dreams, he's back in my dreams as well. We have finally found our way.

Award-winning columnist, Saralee Perel, welcomes e-mails as sperel@saraleeperel.com or via her website: www.saraleeperel.com.

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