For Sal Grasso, the Promise of Easter

The Boston Globe

It wasn’t easy. Not for him. Not for his children. Not for his brother and sister. Not for any of us who loved him. He was needy. He was demanding. He was stubborn and brilliant and frustrating and funny, a pain in the neck, sometimes, and an ache in the heart all the time; a very human, human being locked in a body that hung up a "Gone fishing" sign many years ago and never returned.

Sal Grasso could do nothing. He lived in a bed in a small, shared hospital room. He couldn't talk. He couldn't move. He couldn't eat; he had a feeding tube. He couldn't breathe; he had a ventilator. He couldn't smell the flowers his friends brought or turn his head, even in the spring, to see the trees blooming just outside his window.

When an IV was inserted into his skin instead of a vein, he couldn't scream. When he was cold or hot or just plain uncomfortable, he couldn't complain. And, though he couldn't sip or chew or open and close his mouth on command, he could and did every day of his life, manage to smile. 

His was the agony in the garden. And the scourging at the pillar. And the carrying of the cross. Sal Grasso carried his cross for 10 long years.

He wasn't an easy patient. He needed. He wanted. Not just a boost because he had slipped down in the bed; not just the air conditioner or the TV turned on or off. He needed and he wanted to do, to go, to live, to be involved, to listen, to sing, to hug his son and daughter, to ride his motorcycle, to ski, to skate, to eat rocky road ice cream, and to go home to Gloucester and smell the ocean again.

Day and night he dreamed about going home.

He was 48 and newly a widower when ALS, a fatal neuromuscular disease, ambushed him. He didn't know what he had. His legs were weak. He got tired biking. He fell playing hockey. He prayed and read self-help books and told himself he was just tired, that he couldn't get sick because he had kids to raise.

Amyotrophic lateral sclerosis, also known as Lou Gehrig's disease, didn't care about his kids. It took him hostage anyway.

People were stunned when they saw what this disease did to Sal, people who knew him when he was healthy, when he was a huge, fun-loving man doing for everyone, living life the way life is supposed to be lived. He was an artist. He was a salesman. He was a hockey coach. He skied. He sang. He danced. And he gave and gave. They had trouble reconciling what they saw with what they remembered.

They cried when they left Sal's room.

But Sal seldom cried. He was still Sal, full of spirit and life, and still involved in other people's lives. He said he danced in his dreams. He said he painted in his head. He said he sang songs in his mind. Most of the time we just asked questions. "Do you need to be suctioned? Is it your feet? Do you want socks?” 

And Sal would raise his eyes for yes and lower them for no. But he could also raise and lower his eyes to manipulate a tiny computer, which, letter by letter, when it was working, slowly spelled out words.

He averaged two words a minute. Night after night, year after year, his brother, George, copied Sal's words onto a computer and e-mailed Sal's friends.

Sal lived through his friends, even when he couldn't manipulate the letters anymore, even when ALS stole the movement from his eyes. After a trip to the Museum of Fine Arts in Boston a few years ago, one of his final trips outside the hospital, he wrote: "I had a blast. Having my friends enter my world for a few hours was my treat of the year. I hope I taught everyone not to ignore beautiful buildings like museums in your own backyard. . . . The best part of the day for me was rain on my face, sun and wind in my few strands of colored jet black hair.” 

Sal died last week. He never wanted to die, not even on his worst days. And he had some bad "worst" days. But he loved life even his life.

I picture Sal with God. I picture him sitting on a bench chastising the Almighty, then getting up and skating away, not the way he used to, not to score a goal, but slowly and rhythmically. I picture him dancing, sun and wind in his hair.

Sal loved the world.  But he's in a better one now. That's the promise of Easter. Life doesn't end. It just changes.