If you’re new to this blog, I am one of 100,000 in the United States that suffers from Retinitis Pigmentosa, an inherited progressive eye disease that results in blindness or near-blindness.  My posts focus on my experiences in coping with my ongoing vision loss, culling out the positive.


I loved the sound of my jangling car keys!

When July’s endless sunshine rolls around, interrupted by thick, gray clouds and a downpour, it brings back the memory of that one summer day all over again.

“You’re in Michigonian land now,” Mark said after my arrival, “Don’t expect your Pennyslgonian weather to follow you here.”

He liked to play with words, maybe to impress the writer he imagined I was back then. Maybe because when a relationship is fresh, the banter is too.

He pushed the grocery cart with one hand and held onto my fingers, which rested on the steel handle, with the other. Earlier, I had folded my cane and left it in the car. “You don’t need that right now,” he’d whispered. Such moments came rarely for me, and I relished them.

I remember the thick watermelon slices we ate, the sticky juice dripping down our fingers in the store parking lot next to the car. He used a pocket knife to cut through the tough rind, and with a slow smile, he handed me slices too big to fit into my mouth.  I attempted to eat a second one but the juice tickled, and to my dismay, I snorted and felt a weird sensation as a seed flew up my nose. “I’m not a cartoon character,” I said feeling like Bugs Bunny. “Cut this in half.”

I laughed at the silliness of eating watermelon slices that big.

Mark laughed, too, as he wiped the juice off my face with his hand, one so tanned by the sun he said people took him to be from over the border. Which border, I wasn’t sure.

The sun caused a problem for me. Even with my sunglasses, I squinted to see this man that filled my stomach with butterflies from the start. He leaned over and kissed me before opening the car trunk and placing several full bags inside.

“We’d better get these groceries home,” he said. “We have the whole afternoon for our picnic.” He glanced at the sky and frowned. “Hope the weather holds up.”

With the leftover watermelon stashed away in its flimsy plastic bag and the dark green rinds tossed in the trash, we prepared to leave.

I opened the passenger door to Mark’s small white Mustang convertible. “She’s got some years on her,” he’d said caressing the glossy enamel exterior, “but she’s still my baby.”

The tips of my mouth turned up as I looked over at his blurry figure. “Don’t hold back now.”

I faintly caught his shrug.  “You gotta slam the door or it won’t close all the way.” His words were part-apology and part-directive.

“I used to love driving.” I tried not to let my voice show how I longed to feel the wheel at my fingertips.

“I used to love driving.” I tried not to let my voice show how I longed to feel the wheel at my fingertips, how I used to follow a curve to wherever it went, then make my way home, put the car in park and slowly take the key out of the ignition. I jangled the keys on my chain all the way to the house before I set them on my table.

I hated giving up driving, something I did twice, once before going overseas in ’97 and again, nine years later when I returned to the States. I made excuses why I didn’t buy a car. I couldn’t admit that I didn’t see well enough to drive anymore in a country where driving equaled a show of independence.

Mark looked over at me, a dare in his eyes. “Want me to put the top down?”


I kicked off my sandals and jumped onto the seat as he slowly backed out of the Kroger parking lot. I stood up, my face to the sun. My short hair whipped around as he gained speed. “This is living!” I shouted, my words lost in the rush of the wind.

My heart beat faster and I waved my arms back and forth, thrilled at my own daring. Maybe it was that I was nearing fifty and felt sixteen again. But maybe, with the sun warming my arms and the wind whipping my hair, it didn’t matter that I couldn’t see much or that I relied on a red and white cane to get around.  At that moment, I trusted myself completely.

At that moment, I trusted myself completely.

As we neared the private road leading to Mark’s house, he pulled the car over.

“Drive,” he ordered.

“What? No, I can’t. I couldn’t. Can I?”

“You want to drive, don’t you?” he sounded excited. “Is it a good vision day?”

It was no better or worse than usual but I said, breathlessly, “Yes, it IS.”

“Then drive.” I could hear the challenge in his voice.

My heart thumped against my chest, the excitement welling up in me. I stared at Mark, still in disbelief. I felt like Olive Oil with a cartoon heart increasing three times itself in size as she almost swooned at Popeye, her sailor man. “Are you serious?”

“Drive,” he repeated. “We’re almost home. It’s a private road. You’re having a good vision day.  Take the wheel.”

He didn’t have to tell me again. I took it. As we changed places, I think we both realized what a gift he was giving me.

After not driving for fifteen years, I found myself behind the wheel of a small gutsy convertible. With my bare feet lightly touching the pedal and my hands gripping the steering wheel, I stared the road down and drove forward. Somehow I managed to drive in a straight line. I halted momentarily as I glimpsed the driveway to Mark’s place. There, I made the turn and parked his convertible.

I’ll never forget that rush of adrenalin. “This is living,” I whispered, my face tilted toward the steering wheel breathing in the leather. “I can’t believe you trusted me with your car.” I pointed to goosebumps on my skin and the slight movement. “I’m trembling.”

Mark pulled me into his arms and gestured to the July sky. “Look. We made it home just in time.” The clouds had rolled in. The sky was gray and large Michigonian-sized raindrops pelted us as we made a dash for the house.

“This is living,” I whispered, my face tilted toward the steering wheel breathing in the leather.


You have just read “This Is Living!” Copyright July 2014. If this struck a chord with you, please LIKE it or take time to LEAVE A COMMENT. What would you choose to do again if you had the opportunity?  Make sure to SHARE this post with your friends. Help me get the word out about Retinitis Pigmentosa…and go ahead,  celebrate LIFE!
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15 thoughts on “This Is Living!

  • July 29, 2014 at 2:14 pm

    Lovely! Sometimes it is good to have days like that. Hope you have many more days like this one. 🙂

  • July 29, 2014 at 2:32 pm

    Ha ha! Thanks, Vishal. We have to throw ourselves into living, don’t we?!

  • July 29, 2014 at 2:44 pm

    Thank you, Reema. I agree. I’m grateful that God gives me such moments to remind me that He cares about even my a tiny momentary pang that I have, such as driving!

  • July 29, 2014 at 10:35 pm

    I love it! I am so glad you have this opportunity. I try every day to live my life to the fullest, without a disorder. I think I take some things for granted. But then again, I’ve always been one to enjoy all kinds of little things.

  • July 30, 2014 at 4:22 am

    Ok…please do not take this the wrong way (as most people do when I say this) But I just love Mark! He is one awesome guy! I work with a man who has lost his vision as well and you remind me of him. He drives golf carts, helps people put new roofs up…he lives like everyone else, like you. This is living…thank you for sharing Amy 🙂

  • July 30, 2014 at 1:24 pm

    What a great piece – a great start to my day!
    Love summer 🙂

  • July 30, 2014 at 1:27 pm

    Thank you! Glad we share that philosophy!
    Culling out these pleasures take an eye for it, so to speak!
    Come back and visit again!

  • July 30, 2014 at 1:31 pm

    Ha ha! You made me laugh, Jen! =)
    Good to hear about your friend! Always encouraging!
    Thanks and come back to read more of my stories.

  • July 30, 2014 at 1:48 pm

    Smiling here! You got it, Kate!

  • July 31, 2014 at 2:30 am

    Great post Amy!! I could so relate. It’s been about 6 years since I last drove (I gave it up willingly because my vision wasn’t cooperating with me). When I was reading this I almost felt like I was right there with you experiencing the awesomeness of being behind the wheel if only for a moment. Thank you

  • July 31, 2014 at 12:42 pm

    Loving that you can relate! =)

  • July 31, 2014 at 5:57 pm

    This is a great story! When you started to drive, I got the goosebumps!

  • August 1, 2014 at 2:27 am

    Wow, Beth, you got how I felt! =)

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