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THE HONGI

9/19/2018

3 Comments

 
Picture
Our family has a new favorite actor. His name is Manu Bennett, more popularly known as Deathstroke in the TV series Arrow, Azog in the movie The Hobbit, or Crixus in the TV series Spartacus. Still don’t know him? No worries. I didn’t either until last weekend at the Cincinnati Comic Expo. But from this day forward, I’ll never forget him.
 
For those unaware, Manu is a strong, chiseled, and deep-voiced actor typically cast as a tough guy - villain or hero. On film, he fights hard and usually wins. In press, he’s often found gracing covers of fitness and health magazines. In person, he is a tan-skinned New Zealander with dark flowing locks, a warm, beaming smile, and an incredibly caring heart.
 
The world needs more Manu’s. Let me explain.
 
The Cincinnati Comic Expo is one of Alex’s favorite days of the year. Each year, he circles the date on his calendar months in advance and counts the days until its arrival. He does not for the comic books, the graphic artwork, or the elaborate costumes, but for the plethora of actors willing to exchange an autograph, selfie, or both for cash. It’s a racket, if you ask me, with starstruck fans shelling out hundreds of dollars for the chance to meet celebrity. Not my usual cup of tea, but Alex LOVES this event, and we attend every year.
 
Our day started this year upon Alex’s waking and his excitement for the day. He couldn’t stop talking about the Comic Expo, and hurried me along to get him ready. He patiently waited in bed while I fed and then dressed him for the big day. Although he genuinely worried whether his deteriorating back would last, he eagerly brainstormed which movies to bring for the various actors to sign. Wait a minute, I thought! Who said anything about autographs? Ignoring my non-verbal warnings, Alex pressed.
 
“Yeah, Dad. Autographs!”
 
For whatever reason - perhaps his level of excitement or his challenging year of back pain - I relented. It had been a tough summer for Alex. I reconsidered and thought what the heck.
 
“Okay, but only one,” I surprisingly succumbed to his excitement.
 
“Yes!” he immediately replied with achievement, then pushed his luck. “Can I get two?”
 
I shook my head with resolve. “No. One.”
 
Alex frowned disappointment and pressed further. “Awwww, come on, Dad! You KNOW I love to meet people!”
 
I smiled and nodded agreement. “I know you do. We think that’s awesome. You can meet all the people you want! But…only ONE autograph, okay?”
 
Alex looked away to the window trying to think of another route of persuasion.
 
“ONE!” I preempted when he opened his mouth. I then revealed how I really felt. “Besides, they’re just scribbles on paper anyway.”
 
Alex grumbled his shock and disagreement. I silently worried if I had squelched his enthusiasm. I guess I was already in a sour mood. You see, he and I have different perspectives of the Cincinnati Comic Expo.
 
To Alex, the Cincinnati Comic Expo is a superhero-packed, fan-filled event that is alive and awesome! It gets him out of bed and out of the house. It allows him to spend time with people other than Mom or Dad. It connects him with the world and especially his heroes, favorite celebrities, and complete-strangers-turned-best-friends…seriously. The day helps him to forget about his limitations with Duchenne Muscular Dystrophy. It helps him to forget about his back pain. It puts an everlasting smile on his face.
 
To me, the Cincinnati Comic Expo, while entertaining, is challenging and exhausting from start to finish. The day is physically taxing, emotionally tiring, and oftentimes downright frustrating. I sigh thinking of the effort involved for simply getting Alex dressed in costume, out of bed, and out the door. I cringe with annoyance thinking about locating accessible parking, navigating through oblivious crowds, or any other inconvenience in the world of immobility. I say this because where before I could dress Alex easily, now requires a nearly continuous and complex series of pulls, lifts, pushes, and turns of a body larger than mine. Throw in Alex’s desired one-piece superhero costume, and I quickly break out in a sweat while dressing him. This is followed by hoisting, positioning his heavy body to a place of seemingly disappearing comfort, and then grooming him to be ready for the day and challenges that await. After more than an hour, we then have the joy of looking forward to parking, crowds, and other challenges at the Expo.
 
Sigh. Bad attitude, I know. But, please keep reading.
 
Upon arrival to the downtown venue, we found a nearby parking garage and predictably drove to the highest level because the spattering of handicapped parking spots were already full. We maneuvered Alex’s wheelchair out of the van and onto the parking stripes partially covered by the wonderful parking job of the adjacent car. We encountered a rickety elevator too small to enter that forced us to traverse five levels of ramping while continually cautioning cars from hitting us (note: we found a more accessible parking garage AND a working elevator on Day 2 of the Expo…thank you, 84̊ 51ꞌ Building!). Upon safely reaching ground level, we navigated our way to the Expo entrance only to find stairs and yet another long detour for wheelchairs.
 
Inside, we found thousands of people more concerned with finding that rare comic book, unique t-shirt, or collector’s pin rather than allowing a young man in a wheelchair the chance to simply drive. We politely and continually redirected those who failed to simply look down to avoid collision. We saw costumed fans enjoying hot dogs, pizza, popcorn, and fun drinks, while we patiently worked to feed Alex a bite and then wipe his lips after every one. After being told straws were no longer provided at the event for environmental reasons, I tilted a water bottle to his mouth and tried not to pour it down his face, but did anyway. We ignored the frequent stares of those unfamiliar with a young man in a wheelchair with portable sip ventilation.
 
Sigh. Such is life with Duchenne. As much as you learn to deal with it, it’s still frustrating at times.
 
Then, after fighting the crowds, we made our way to celebrity row. There, an abundance of celebrities sit behind tall tables that are positioned in front of black curtains with elaborate posters featuring the actor’s name and photograph. In front of the tables, signs post the actor’s window of availability as well as cost for an autographs, selfies, or both. Highway robbery, if you ask me. Besides, they’re basically all the same, right?
 
Was I ever wrong.
 
Alex had selected Manu Bennett for his ONE autograph. I had no idea who Manu was but just smiled my support of Alex’s dream to meet a celebrity. As Alex led us to the line for Manu, I could see the crowd ahead and my frustrations soon began to mount their offensive. The line was long, about fifty people deep and snaking through several switchbacks taped on the floor. Simple for most navigators, but awkward for wheelchairs. I subtly shook my head at the situation and sighed.
 
We then waited.
 
And waited.
 
And waited.
 
It had been over an hour already and it seemed the line was not moving as fast as it should. Although we met many interesting people, I wondered What could be taking so long? Was it really worth it? Someone ahead then relayed that a few dealers had brought a boatload of items for Manu to sign and certify, which extended our wait time. I noticed a sign posted that Manu would only be available for another 20 minutes. I counted the number of fans before us and calculated our chances. My frustrations mounted on top of the ones I already had brought with me that day.
 
Are you kidding me? I thought. We wait all this time and then NOT get an autograph!?
 
“Dad, we’ll get one. Just be patient.”
 
I looked to Alex. “Sorry, did I say that aloud?”
 
“Yes!” Alex shook his head in mild embarrassment, and then sipped his ventilation.
 
I settled myself and focused on Alex’s genuine excitement. I still could not see the value of the autograph, but a deal’s a deal. Be patient. This was for Alex, I told myself.
 
Soon, our position in the line had approached the celebrity table. And, go figure, Manu’s handlers announced he would be leaving for a photo shoot and be back in an hour. I swiveled in frustration before one handler noticed Alex and said, “but...after this young man!” I sheepishly smiled our thanks and swallowed my impatience. I then opened my wallet, voiced apology, and paid the requisite fee, silently protesting the charge as ridiculous. Alex asked me to get his empty Arrow DVD case for Manu to sign. I did, and then handed the case to Manu.
 
“Ahhh, you’re an Arrow fan, I see!” Manu exclaimed in his rich New Zealander accent.
 
Alex beamed that a celebrity actually talked to him. I waited politely.
 
Manu signed the movie and then, after some chit-chat, reached for a picture of his character Deathstroke (Alex told him he loved Deathstroke). He signed the picture as well, while I whispered to the handler we only wanted ONE autograph. The handler shook his head and dismissed my cost concerns. After some more chit-chat between fan and actor, Manu stood up, walked around from behind the table, and asked Alex if he wanted a selfie, too.
 
I immediately looked to the handler who had anticipated my concern and dismissed it a second time. Relax, man, he expressed with just a glance.
 
I turned back to Manu and Alex, who were talking and lost in their own world.
 
And there, they struck me.
 
Before me was one of the most beautiful, personal, exchanges I had ever witnessed. Manu had squatted to wheelchair level, ignoring all eyes upon him. He reached out and then gripped Alex’s hand like they were blood brothers. He held it tight while they talked. Manu listened as Alex shared his life with him. Alex told him about being adopted from Romania. He shared how he lives with Duchenne. Manu smiled, nodded respectively, and leaned close. He told Alex to stay strong, be brave, and keep being the awesome young man he could tell that he was. While tears formed in my eyes watching this exchange, Manu and Alex posed for a selfie taken by the handler. Alex’s joy was beautiful. I was so happy he could meet one of his heroes.
 
They were not done.
 
Manu then turned again to Alex and explained what he was about to do. He told Alex they were going to touch noses and then foreheads, close their eyes, and breathe deeply together, intimately sharing the air they breathe.
 
“This is called a Hongi,” Manu explained quietly. “It is native to my homeland of New Zealand and is shared amongst friends to exchange the breath of life and the sharing of souls.” He waited until Alex understood, and then asked. “Are you ready?”
 
Alex nodded.
 
Manu and Alex then touched noses and slowly joined foreheads. They closed their eyes and breathed deeply, Manu’s breaths clearly stronger and Alex following Manu’s lead as best he could. Manu then whispered, “Use my breath to give you strength, as yours will do the same for me.”
 
Alex and Manu continued breathing like this for nearly a minute. I wish I had the nerve to take a picture, but I was too struck by awe and respect to do so. Those in line behind watched silently as well. It was truly magical.
 
When Alex and Manu finally parted though still holding hands, you could see the shared experience had affected them both. They held eye contact for an extended period. I stood by with an everlasting smile. What crowds? What frustrations? What Duchenne?
 
THIS was incredible.
 
THIS was back pain taking a back seat and frustrations melting away.
 
THIS was a reminder of our shared humanity, no matter how famous or able or seemingly overwhelmed.
 
THIS was life as intended. Shared. Beautiful. Giving.
 
Manu eventually stood, smiled, and then quietly disappeared behind black curtains to his scheduled photo shoot.
 
Alex and I sat stunned for a moment trying to comprehend what just happened. We looked to each other, smiled in amazement, and then pivoted to roll away. Alex held his smile and forgot about his back pain. I held my smile and walked with renewed energy to meet anything the Cincinnati Comic Expo had to offer.
 
As we approached another table, Alex asked, “Can I get another autograph from someone else?”
 
I chuckled at his renewed attempt and then shook my head.
 
“No, one is enough.”
 
One was more than enough.

 
 


Note: On Day 2 of the Expo, Alex rolled by Manu’s table again, hoping to chat. The line was long and we debated if we should wait. His handler noticed us and pulled us to the front of the line. There, a second time, Manu stopped what he was doing and came out to talk with Alex. Their conversation concluded with another Hongi as if they were friends for life.

3 Comments
David Pansing
9/19/2018 11:54:37 pm

Wonderful, absolutely wonderful !!!!
Thanks Dave Thanks Alex Thanks Manu....I’ve never had a “star” as a hero...glad to have one now.

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Rick Kenter
9/24/2018 06:55:00 am

In these times full of examples of humans acting badly, it is so refreshing and uplifting to see this example of what real humanity is all about. Great telling of a great story!

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Patrick A. Noll
10/1/2018 09:49:18 pm

WOW, what a powerful story. Such a complete narrative that has all the components of living with, worrying about, and mostly caring for and loving a child with special needs. The difficulties of every day life, the hurdles of the real world, the disinterest and inconsideration of the average person and most important, the revelation of those people that are inspirational. The people that you don't realize are so special because they don't have to advertise it, they wouldn't even consider boasting about it. It isn't until they are confronted with a difficult situation that they step out of the shadows. When this happens you know that you are witnessing a sign from above that things are ok. That, whether you see them or not, there are people out there that will restore your faith in the big picture. Alex is a special man. I knew that the minute I met him. He made me feel at ease and we talked for hours. It's a time that I will never forget. A time that profoundly effected me. I'm sure that Manu experienced the same thing. This isn't just a story about how Manu stepped up and truly went above and beyond. He is obviously a special soul that "gets it". It's also a story about a young man, afflicted with a disease, cursed with overwhelming difficulties that has a God given gift to make others feel comfortable with his smile and optimism. To positively affect people while strapped to a chair. And a story about the keeper of that gift from God, David who know the difficulties ahead but also knows it is his role to bring this gift into the world and expose the light that is surrounded by all of the darkness. He carries the unbelievable burden of caring for his son but also lays witness to the glory that is revealed by Alex's interaction in the world.
Thank you David, Alex, and Manu for sharing the stories of three super heroes. God bless.

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