No thinking adult truly expects life is fair. Most of us grow past that fantasy during adolescence.

Even so, there lives deep in our hearts the desire that life be fair. And when it’s not, we ache for what “should” be. Unfortunately, if we focus so much on what “should be” we miss the joy available to us in what actually is.

I have a photo which I took on our honeymoon. It sits on my desk. It’s a reminder of many things for me, but it serves primarily as a memorial to joy, overcoming fear, and commitment for the long haul.

Exploring Eureka Springs, Arkansas, we drove by an observation tower. My wife said, “let’s go look!” I turned around and parked. Afraid of heights, I looked at the tower and noticed the first platform about 15 feet above the ground. I expected we would stop there, look, take a picture and return to earth.

She hurried across the parking lot and started up first. I carefully followed her, walking slowly up to the first observation level.

She wasn’t there!

Instead I could hear her running up the metal steps to the top. I faced a dilemma. I remember making a calculated decision, “Do I stand here and wait for her to come down (and look like a wimp) or do I venture after her to the top?”

I often consider how current events will impact my future. I knew, if proven a wimp on my honeymoon, I’d never feel good about it. I swallowed my fear and with both hands on the stair rails I slowly climbed to the top.

A few minutes later, with the tower swaying in the wind and my stomach knotted up, I stepped slowly and gently from the last step to the platform at the top of the tower. She was leaning out at the edge looking across the valley. We were alone at the top of the world.

“Come here,” I said, standing near the stairs trying to hide as much of my terror as I could, “and kiss me.”

We kissed. I held my camera out at arms length, pointed the lens toward our kiss and I tripped the shutter. “Gotta go,” I said and started slowly and carefully back to Earth. In my opinion, it’s the best photo I’ve ever shot.

The angle, the lighting, the wind … it’s an excellent photo. She’s taller than me in the photo because I was hunkered low near the stairs. The wind is blowing her hair in my face. We’re against a blue sky. The photo is in a frame matted with a red heart with two doves cut into the mat’s upper corners.

It’s a photo of swirling, giddy, joy. Just the two of us on top of the world on a beautiful, breezy, blue-sky day. She was full of energy and possessed the grace of young lady, the excitement of a newlywed, and the hope for a great future. I was frightened of the height, hanging on to the only stability I could find, and wanting something firm, like planet Earth, under my feet again.

Fast forward 17 years and see the change. Several years ago, a psychologist-friend cured me of my fear of heights. I’m the one who flies up ladders now, while I doubt my wife with MS could make it to the top. Our tower-climbing roles have reversed.

I see the photo on my desk and I’m reminded of how roles change over time. If you’re an MS caregiver for a family member, the disease will force role changes. Caregiving will call you to make changes in your routines, roles and responsibilities. Some changes will be uncomfortable and you’ll think, “This isn’t fair. I didn’t ask for this.”

It’s also likely that you will enjoy some of the role changes.

For example, I get the biggest kick out of a day with my daughters at the mall buying clothes. To be honest, if my wife could do the mall, I’d probably rarely, if ever, spend the day clothes shopping. It’s just not natural. But it’s fun.

I know my daughters have stepped out of a dressing room and heard me say, “too short,” “too tight,” “too thin,” or “too much,” and they’ve thought, “Mom should be doing this.” But such is life.

Caregiver Tip: Avoid focusing so much on what “should be” that you miss the joy available in what actually is.

2 Comments on Discovering the Joy in What Is Beats Aching for What Might have Been

  1. gabe says:

    wow.

    good stuff.

    – nice to finally have a story behind the picture i have seen for years.

  2. As a married woman with MS, it’s really comforting to me to read a spouse’s point of view. When my husband and I were planning our future, we thought I’d be the one out making money, and he’d be the stay-at-home parent with time for writing.
    We planned. MS laughed.

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