YORK, Nebraska — Nicholas Bell sits on a gray chair at a gray table in a gray room with three inmates, all in gray. A guard watches from the corner.
We are in prison, a fact hammered home in this colorless setting by the fencing and razor wire, the five locked doors we have entered and the three women serving long sentences.
Nicholas, a poetry teacher visiting from Omaha, is serving a life sentence in a prison of his own. But his walls, fences and doors are all medical. He has cystic fibrosis, an incurable, terminal disease that will probably kill him. He nearly died of it back in April.
On this day, he has entered the Nebraska Correctional Center for Women with a symbol of his own confinement — a mask. He pulls it up over his nose and mouth. He can’t risk getting sick.
But something strange happens around the gray table in the gray room inside the prison with the ill teacher and his guests, who include another poet from Omaha and Nicholas’ girlfriend.
As each person puts pen to paper, the words provide escape. For a couple of blessed hours, the walls disappear and this becomes a group of fellow writers, fellow sufferers of the human condition, people who are down but not out.
Nicholas gives them a first exercise, a simple one in which they are to construct a three-part poem. The first part begins with the words “Some days,” the next part with “today,” and finally, “tomorrow.”
Start with the words, he says. See where it goes.
Some days I fail to remember that I have a terminal illness
until my smokers’ cough interrupts the silence of forgetting.
Some days I don’t want to call my illness terminal.
I want to pretend that I’m normal just like you.
For nearly all of his life, Nicholas has known that cystic fibrosis will kill him. The median survival age is 40. He is 32.
But the real question, he realizes, is how will he live.
His answer to that question has evolved with age, experience and a very frightening episode earlier this year.
In childhood, Nicholas tried to defy the disease. When doctors said he probably couldn’t play sports, Nicholas went out for every sport he could: playing basketball, baseball, soccer and football. He wasn’t going to let a disease dictate his life.
Then in college, grad school and the rest of his 20s, Nicholas approached the heaviness of that question with a kind of denial. He hid his disease, barely talked about it outside his family and closest friends and never dreamed of sharing his journey with his wider circle in the world of slam poetry. He didn’t really write about it. He never spoke out about it.
Plus, he kept busy. He had a regular, full-time job, selling supplies for a dental lab. He had a side job with the Nebraska Writers Collective, an Omaha nonprofit that provides literacy outreach. This side job consumed him. Nicholas led teams in the annual teen poetry contest, Louder Than a Bomb. And he started a poetry program in three correctional institutions: the Omaha Correctional Center, the Douglas County Youth Center and the women’s prison in York.
The prison program, in particular, did two things for Nicholas.
First, it helped him feel like he was doing something worthwhile and necessary, something that was bigger than himself, something he could leave behind.
Second, in doing something for others, Nicholas felt less alone. Facing people with deep struggles, Nicholas could forget about his own problems even when that nagging, persistent cough raged.
Today I am frustrated that I am coughing way more
than yesterday. Today I am tired, but then I remember
that we’re all tired, we’re all battling something
and this thought makes me feel less lonely.
Nicholas coughs a lot — up to 30 times an hour. Cystic fibrosis is a genetic mutation that alters how the body produces and secretes liquids like mucus. The mucus is thick and blocks airways and ducts.
He also must keep a routine of hours-long daily treatments and is a regular at the adult cystic fibrosis clinic at the Nebraska Medical Center. He is vulnerable to infection. A common cold can become very serious, very fast, which is why he’s always on antibiotics.
Like the IV he shows me when we first meet in a coffee shop in early April. Nicholas lifts his sleeve to show me a snaking line of intravenous tubing and explains that, at that moment, he is on three different medications, each administered by an IV drip for hours. He has nine alarms set on his phone so he doesn’t forget.
We meet again a few days later, and he is competing in a poetry slam held in the Old Market. Nicholas stations himself near an exit so he can cough surreptitiously.
When we meet a third time, in mid-April in his hospital clinic, Nicholas isn’t feeling well. He’s been coughing up blood — a lot of blood. And after that clinic visit, Nicholas is soon hospitalized.
When we meet a fourth time, at his home in May, Nicholas is weak, has lost weight and is looking glum. He had nearly died in April. He had gone into the Nebraska Medical Center and was sedated for nearly five days as surgeons tried to stem the bleeding from his damaged lungs. His family had rushed to be with him. A brother drove from Florida. Another flew in from New York.
When he awoke, a doctor told him it was time to consider a lung transplant, a devastating next step. Lungs are fickle and transplantation can buy time, but not a ton. Maybe six years.
The news hit him hard. It made him realize that he could no longer treat his illness as some inconvenience to hide and work around. Nor could he treat his time left on earth as a given. What was important became crystal clear.
The day he was released from the hospital, Nicholas took his girlfriend, Kris Charboneau, to a park. He gingerly got down on one knee. And proposed.
Today I am grateful for life, for breath. Such a simple act
that’s become so complicated by my body.
Nicholas made some other decisions.
He stopped working at the dental lab and made the difficult decision to scale back his part-time gig with the Nebraska Writers Collective. He narrowed his focus to his health and made a promise to himself that he would do everything on his end to buy as much time as he could. He buckled down on rigorous daily breathing treatments — a life-jacket-like vest that shakes him and medications he must inhale while wearing that vest.
In early June, Nicholas Bell went to find out whether his efforts had paid off.
He returned to the cystic fibrosis clinic at the Nebraska Medical Center. Kris, who accompanies him to nearly every appointment, came with him. Kris helps keep him accountable for finishing his breathing homework.
During the two-hour appointment, Nicholas saw eight different health care workers, including respiratory therapists, a social worker and his pulmonologist, Dr. John Dickinson, who appears to have all the time in the world for Nicholas.
No one could believe the results. Nicholas went from being very, very sick in April to — could these readings be right? — having the best lung capacity numbers he has scored in two years.
“Keep-going-keep-going-keep-going, GOOD!” exclaimed therapist Sandy Wahl as a red-faced Nicholas completed his third-in-a-row breathing test, which measures how much air Nicholas can breathe out and how quickly.
He was at nearly 50 percent lung capacity — much higher than in April, when it was 30 percent.
“It’s great,” Dickinson says of the improvement. “It’s awesome.”
The better numbers mean Nicholas can ditch the oxygen tank he has had to be on at night. He can push the lung transplant to the back burner, too, though any more significant bleeding will move that option right back to the front.
Dickinson asked Nicholas why he thinks his lungs have bounced back.
It was no mystery to Nicholas. He had slowed down his life and made his lungs his top priority.
“I always put work in front of health,” Nicholas told him. “I don’t want to find myself in trouble again.”
Today we are in this fight together. Life takes
what it will from us but we steal back the moments
worth remembering and let life keep what it wants
because ready or not
tomorrow will come and we’ll be standing here ready
for the challenge. Today we pray for a cure that we hope will come
tomorrow, but if it doesn’t we will remain hopeful
and grateful that there will be another tomorrow.
Nicholas has quit trying to pretend he’s OK when he’s not. And while he may not be able to control the disease’s progression, he has committed to doing what he can to maintain his health.
For instance, Nicholas, who is not particularly religious, joined a Buddhist temple so he could chant — and thereby strengthen his lungs.
And he has called up Willie Karpf, a Morton Middle School music teacher and saxophone player in the local funk band Satchel Grande, for some lessons in his living room.
Willie makes the sax look all too easy. Nicholas, who squeaks up and down the scales, struggles.
“That was way off,” he says after one run.
“Do it insanely loud, offensively loud,” Willie instructs.
The point isn’t exactly to play well. It is to breathe.
After about a half hour, Nicholas is done.
“I’ve definitely reached my tipping point,” he says. “I play until I can’t any more.”
Inside the women’s prison, Nicholas is relieved to see Shar the guard. Sharlene Most makes his life easy. She doesn’t hover and therefore helps everyone in this prison gym try to forget for a couple hours where they are.
For a while, it seems, they do.
The prisoners fawn a bit over their teacher, over Kris and her diamond ring and seem sincerely interested in Nicholas’ health when he tells them good news, his numbers are up. And bad news, he can’t continue working here for a while because he needs to focus on his health.
Then everyone gets down to business. Nicholas and Shukura Huggins, another poet, run the participants through various writing drills that get them thinking about favorite events and future hopes. They do a wordplay exercise that pairs nouns with adjectives unpredictably like “hopeful clock.” This one gets wry laughs.
They take turns reading their poems to the group. Nicholas reads one about having cystic fibrosis.
As he reads, tears fall.
Two of the women prisoners said that prison life offers a paradox. Inside the walls and fences, they find a certain freedom. Freedom from mental illness, through the treatment they are receiving. And freedom from the strains of daily life outside.
Sure, they’d rather be out of prison than in. But within these walls, they find some peace.
So, too, does Nicholas in his own prison. He has found peace in the acceptance of his illness and in knowing that — even though so much is out of his control — there are things he can do to stabilize his health. He lives in the present and doesn’t worry so much about the future. He wants to marry Kris, become a father and do what he can to further the causes of cystic fibrosis research and outreach through the prison poetry program.
Sure, he wishes he didn’t have cystic fibrosis, wishes no one had it. At the same time, he acknowledges that the experience has shaped him, and not in a bad way.
“I’m thankful for everything I’ve been through because it’s made me who I am,” he says. “If I could wish away cystic fibrosis, I would. But I’d be wishing away who I am. And I like who I am.”
Nicholas Bell wants your support for the Nebraska Writers Collective, an Omaha-based nonprofit that provides literary outreach programs, such as the Writers’ Block poetry-in-prison program he started. To learn more: newriters.org
Nicholas also needs to build up his personal medical fund for a likely lung transplant and other expenses related to his cystic fibrosis. He is crowdsourcing for that fund at www.crowdrise.com/all-n-for-nicholas