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some day i will write a book

Someday I will write a book. It will begin like this:

When it was my chore as a child to clean the kitchen after supper, I would set the biggest pots in the sink and fill them with soapy water. In my little hands, they were unwieldy and difficult to manage. I knew after my Mom heard me say the magic words, “these need to soak,” I could walk away and trust her to clean the big pots.

Tonight I remembered this bit of childhood while standing in the kitchen. My wife had cleaned up after supper. I found three large pots filled with water sitting in the sinks. Difficult for her to manage, I know “they need to soak.” I smiled, grabbed the dish detergent and sponge, scrubbed the pots and dried them.

With my hands in hot water, I realize the time has come. I knew it would, but I couldn’t start until it became necessary, until I actually felt the need.

It’s time to begin writing. It’s time to start sharing the changes brought by Multiple Sclerosis (why do we give it the respect of capitalization?), and it’s time to share the impact those changes have had on my wife, my family and me.

Now that it’s time to write, I’m sure I should begin by clearly establishing the various reasons.

When my wife was diagnosed with MS, we were shocked. And while the information was helpful in a “this you need to know” sort of way, the reading materials we received from doctors and those I found in the library were too clinical to help my heart. It was great stuff for the mind and useful information about all that we would or could experience, but it presented no pathway for the emotional journey.

I’ve worked as a performance improvement director for a large residential treatment facility for children. I’m skilled at planning, implementing plans, observing results and reiterating the process after tweaking the plan in response to undesired outcomes. It’s easy for me to distract myself from the important matters of my heart by focusing on the practical aspects of preparing myself and my family for an uncertain future. Many things I do because they simply must be done.

So the first reason I write is because I want to be helpful to anyone who has read the clinical materials and still feels overwhelmed by the emotional aspects of an MS diagnosis.

Another reason is to honor my wife. And through the story I tell of us, to honor every person who lives with MS and other diseases and those who love and support them. No adult truly believes life is fair. Most of us grow past that fantasy during adolescence. Even so, there lives deep in our hearts the desire that life at least seems fair and reasonable – and “fair” would be great. When life is not, we ache for what “should” be.

I have a picture on my desk which I took on our honeymoon. It’s a reminder of many things for me, but mostly it’s a memorial to joy, fear, and commitment. Exploring Eureka Springs, Arkansas, we noticed an observation tower. Robbie said, “let’s go look.” Afraid of heights, I looked at the tower and saw the first platform about 15 feet above the ground. I thought we’d stop there, look and return to the ground.

She started up first, and I carefully followed her walking 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. “Do I stand here waiting for her to come down (and look like a wimp) or do I venture to the top?”

One cannot be proven a wimp on one’s honeymoon and ever feel good about it. I overcame my fear and with a hand gripping both stair rails slowly walked to the top. A few minutes later, with the tower swaying in the wind, and my stomach knotted up, I stepped to the top of the tower. She was standing at the edge looking out across the valley. “Come here,” I said, “and kiss me.”

We kissed. I held the camera out at arm’s length, pointed it at us kissing, and I tripped the shutter. “Gotta go,” I mumbled and started slowly and carefully back to Earth.

It is my favorite photo. She is taller than me in the picture because I was standing on the top step. 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 (faded as time has passed) with two doves cut into the upper corners of the mat.

Magic, it was! Swirling, giddy, joy. Just the two of us on top of the world on a beautiful, blue-sky day. That’s how it should be. But of course, life is not fair.

Third, I write for catharsis. During the last several years it’s as if I’ve looked at the world with tears behind my eyes. Seeing my wife slow down, listening to repeated efforts to get a word off the tip of her tongue, doing the grocery shopping because the effort would wipe her out for a few days, living with the constant reminders of what was, what is, and what may be is like going to a movie, watching the sad scene at the end and holding the tears back so you leave the theater misty-eyed but not so much that anyone would notice. You know it touched you. But you don’t want anyone to know how it affected you. You don’t want to be vulnerable.”

When I write my book, I will be vulnerable, and I will write the things I do not say.

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