on August 24, 2014 at 6:00 AM, updated August 24, 2014 at 6:03 AM
My brother Paul was in his recliner, before it was replaced by a hospital bed, working from home on his laptop and busying himself in the downtime with Sudoku puzzles and horse-racing charts.
It should be noted here that my brother was not a gambler — he was too responsible a husband and father to throw hard-earned money away — but he loved the intellectual challenge of handicapping.
It was during this visit less than a month ago that Paul said something to me I have already repeated often and will never forget.
“I don’t know what’s worse, the cancer or the loneliness,” he said. “Because at night, when Lolly (his wife) kisses me on the forehead and puts me to bed and turns out the light, it’s just me and this disease. When I leave the doctor’s office, it’s just me and the cancer. When people visit, they leave and then it’s just me and the disease.”
It should be noted here that my brother was not talking about external loneliness. His wife, especially, never left his side, caring for him in the most selfless, loving way I’ve ever seen. His sons, parents, siblings and other relatives and friends spent time with him.
He was talking about the internal loneliness. “Just me and this disease.” He was talking about the darkest things we’re all afraid of. Cancer. Mortality. The blackness of the unknown. Not being there to protect and love your family, to see it grow. The things that keep us up at night.
His wife understood. “He is fighting it alone. I can’t go in him and fight it.”
In the past few weeks, I have learned that the obituary words “surrounded by family” are the most beautiful phrase in this newspaper.
It is the only thing that eases the loneliness of the disease. It comforts, when medicine fails.
A few months ago, I did a column about a group of volunteers at the VA hospital in Lyons who sit with dying veterans and give them a hand to hold, and a presence to feel, gently ushering them out. Today, I have an even greater appreciation for the work they do.
Those words Paul spoke to me — about human vulnerability and universal truth — gave me a greater understanding of the sick. They are alone, just them and their disease.
My brother had an aggressive cancer, so rare there was no clear path of treatment. It wasted him away with a killer’s savage proficiency, deteriorating his body against the will of his mind.
Paul was an unlikely victim, which makes it that much more incongruous. At 61, he was fit enough to win the pushup contest at the fitness club in the federal complex where he worked. That was a year-and-a-half ago. He did 43 pushups in a minute, beating everyone in all age groups. Forty-three in a minute. Try it sometime.
He got his black belt in tae kwon do in his 50s and played in a soccer league with men half his age. After he had a cancerous kidney removed last fall, he was walking three miles a day within a week. He commuted into Washington — hot, humid Washington in the summer — a few times a week up until a month ago, even as his business suits swam on his diminished frame.
He looked at least 10, maybe 15, years younger than his age. He went unshaven in the last week and his beard still came in mostly black — and this was after seven months of continuous chemotherapy.
As it turned out, those heavily toxic drugs did too much harm and too little good. So a decision was made. Treatments were stopped, leaving just him and the disease. And us.
For most of the last two decades, my brother and father have gone to the Haskell Invitational at Monmouth Park. My dad has 18 giveaway hats to prove it. Many years, our sons or sisters were there, too. This year, Paul was too weak to travel, so the family went to Annapolis, where he has lived for almost 35 years, to watch the race with him — so it wasn’t just him and the disease. And we kept on going. We surrounded him with family, keeping the vigil none of us ever want to keep, but all of us do at some point in a loving life.
When someone is in the final stages, we all feel helpless and uncomfortable, and worry about being intrusive on private pain and grief.
We ask, “What can we do?”
My answer today is, “Show up.”
Show up and hold their hand. Show up and say the things you’ll regret not saying, even if they are whispered in the ear of a comatose person. Leave nothing unsaid. Leave nothing unsaid.
Show up in person, call on the phone. Prove to them they were loved and that they mattered.
In his final days, when my brother could only communicate with his eyes and maybe one uttered word that seemed to take all his strength to get out, we held the phone up to his ear. Best friends from Arizona and New Jersey. Cousins, from all over. If they could have only seen those eyes; they flickered to life, with acknowledgment and appreciation. He was alone with the disease, but not in death.
My brother, Anthony Paul Di Ionno, 62, died Friday at 5:40 a.m. He was peaceful and touched by many pairs of hands as he took his last breaths. He was surrounded by his family.