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Measuring the Moments in My Life With Cerebral Palsy

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In early July of 2015, my family and I were being led by an elderly German man, Frank Van Den Broeke, through Vatican City’s most famous monuments. It had been an interesting morning. Frank was not the typical tour guide. He was very enthusiastic about helping us fully experience the beauty of every artifact and used philosophy to explain each one. He spent time showing us pieces others usually skipped, like the statue of Augustus Prima Porta that is displayed in the Pio Christian Museum. The statue is of Roman ruler Augustus. It is believed to be the bronze copy of the one Augustus’ adopted son Tiberius commissioned in 15 A.D.

Even though it was quite amazing to see a classic Roman piece, I was becoming a little irritated. I couldn’t get to fully appreciate most pieces because I was being pushed around. I was born with cerebral palsy. Cerebral palsy is a neurological disorder that primarily affects body movement and muscle coordination. I rely on a motorized wheelchair for mobility. However, I was in my small manual chair for this trip since Europe is not exactly accessible. Most buildings in Rome were built decades ago and there is limited ramp access. Many don’t have working elevators. Even if there is ramp access, the doorways are narrow and small.

“We are now about to enter the Sistine Chapel,” Frank said as we approached a long narrow staircase. Seriously? As modern as the world is today, you’d think there would be an elevator.

My stepfather and uncles started to prepare to carry me up the steps.

“Let me help you gentlemen carry this lovely young lady,” Frank said as he began to take hold of the right side of my chair. “You just enjoy the ride, Miss.”

With his free hand, he suddenly took out a small sliver harmonica of his pocket. He smiled and started to play a soft tune. He did not lose rhythm — not even once. It must have been either a German or Italian tune, because it was something I’ve never heard before.

“Only a few steps left,” he said as he put up his harmonica. “Prepare to look up.”

We finally reached the top and I was sat down. I looked up. It was more beautiful than I ever imagined it would be. It truly felt like a dream. Every inch of the ceiling was painted flawlessly with colorful frescoes. Fresco is made using pigments mixed with water painted onto a wall when the plaster is still wet. It was done by the Italian sculptor Michelangelo di Lodovico Buonarroti Simoni.

“Isn’t this just incredible?” my mother said, smiling.

“It’s breathtaking,” I replied as I continued to look. “I wish I had my other chair so I could lay back completely.”

“You’re not the only one,” she said, laughing. “I want to just lay down and enjoy the view.”

I was most astonished by Michelangelo’s Last Judgment design on the back wall. It was so detailed. Every impression of each individual in the paint could be perfectly seen, even 10 feet away. I could not stop looking at it. It moved me in a way I never experienced before.

There is an altar right below this piece. On the altar, there are six long white candles displayed on a short narrow brown table. Frank was slowly kneeling down at this altar with his white fedora in his left hand. I smiled and kept looking at the piece. I had been in deep thought and did not notice Frank was now next to me.

“Life is not measured by the number of breaths we take, but by the moments that take our breath away,” he said quietly.

I smiled brightly.

Since that day, those words have inspired and helped through my daily struggles. It only took one moment, one person.

Originally published: April 23, 2018
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