Tuesday, May 01, 2007


Twenty-two is about college graduation.
Twenty-two is about starting real life; building futures and families.
Twenty-two is about being at the top of your game.

I sit in the presence of a warrior; awed and humbled by his strength.
Twenty-two for him is the fight of his life; the fight for his life.

I do not know other people who recognize the gift of life this way.

We complain about our lives and the trials and toils. We feel unfulfilled by the gifts bestowed on us, always yearning and striving for more. We grumble about having to get up out of bed, and yet, this warrior before me has not had that privilege in many years.

The machines that surround him beep and hiss a gentle sound; white noise blurring one moment into the next, whispering the rhythms of his body. Intibated, the machine beside him has taken over where his lungs have left off. He speaks through his eyes.

I make endless conversation, wondering if I am a nuisance. His eyes never unlock from mine as I share stories about his cousins. The tiny nods of his head tell me he wants me to continue. We finally get down to serious discussion. “This sucks.” I tell him. He nods. “This really, really sucks!” I look down at his body, 67 pounds of courage.

The nurse in green scrubs enters with a chart and a greeting; a strong and kind young man with an easy smile and sincere eyes. He asks for a pain level in numbers. Five tiny frail finger tips twitch and pain medication is discussed. The balance between comfort and safe blood pressure levels leave the warrior needing to endure the pain.

Muscular Dystrophy/ Duchene’s Disease: a cruel disease, chiseling slowly away at the muscles until they are rendered useless, yet allowing the seemingly lifeless limbs to feel every bit of pain. Trapped as a prisoner of war, he fights; inside lies an unbendable will of steel that the disease cannot touch.

On schedule, the nurse beckons an assistant to help to move him, shifting his aching body into a different position to lessen the stiffness. He attempts to communicate with his lips over the tube that bends his mouth open. The kind nurse is good at this communication and understands the directions.

“Perhaps I should go so you can get some rest,” I offer, to which he responds with a definitive shake of the head. “You want me to stay?” I ask. He nods and mouths the words “I’m scared.”

I tell him that he is the toughest and bravest guy I know; a fighter, not a quitter. He nods ferociously, devouring the words of encouragement as fuel. Tomorrow they will operate. They will put in a permanent tracheotomy with a breathing regulator to keep his lungs functioning.

A difficult decision.

A frightening prospect.

The alternative is to stop breathing; unacceptable to my warrior who holds the precious gift of life dearly in his strong heart and busy mind.

At days end, I tell him that I must leave. Again we play the lip reading game and I understand this time. “Thank You.” he mouths.

“For what,” I ask, “I’m lousy at this and have twisted you in knots and am no good at charades.”

“For coming,” he mouths.

I walk away inspired.

I think of all of the people I know, myself included, who take for granted our very link with this life. The warrior is enlightened to so much through the walls of his prison body. He is a shining example of strength, dignity and courage; a role model for the weak. I feel privileged to have shared his company today, and tuck a little of that strength into pocket as I walk to my car.
The above is about my nephew Robbie, undergoing surgery today. Please keep him in your prayers...


Suzy said...

Give my love to Robbie.
Prayers to him, oh so many prayers.
He's had a tough life.

Susan McDuffie, LMFT said...

Nancy, thank you for your words. I will pray for Robbie, for him to have the best possible outlook to carry him through this. But I have to say, it makes me mad that people have to live like this! I just don't get it sometimes.

Carrie Wilson Link said...

Thanks for reminding me to be SO grateful for all that I have!

Prayers for Robbie and all that love him!

Terry Whitaker said...

Please let us know how the surgery went. What a true hero!

Michelle O'Neil said...

This is so heartbreaking. You two are beautiful.

Jerri said...

Beautiful, Nancy.

Many prayers for Robbie and all who love him.