15-52 Segment 2: Seriously ill adolescents

 

Synopsis: Seriously ill teenagers still act like teens in the hospital, sometimes aided and abetted by staff. A novelist discusses her observations from years on the hospital floor with her sick child as the basis for her book.

Host: Nancy Benson. Guest: Hollis Seamon, Prof. of English, College of St. Rose, faculty, MFA in Creative Writing program, Fairfield Univ. and author, Somebody Up There Hates You.

Links for more information:

Teen Hospice

Nancy Benson: During the holidays, our emotions may be close to the surface. We feel both joy and loss a little more strongly. For parents whose children are facing a life-threatening illness, the season can be especially difficult. But an author whose son was in and out of hospitals for most of his childhood says the kids themselves don’t allow themselves to dwell on the future.

Seamon:  They were fighting with every last bit of their strength to remain teenagers. They were not easy. They were pains in the butt to almost everybody – the nurses the doctors, their parents. They were teenagers; they were rebellious, they would party late into the night, they would be loud.

Benson: That’s Hollis Seamon, a professor of English at the College of Saint Rose and a member of the MFA in creative writing faculty at Fairfield University.

Seamon: They would be demanding of the nurses. I remember a girl who couldn’t get off the stretcher asking to be brought down to have their hair washed and makeup put on. That struck me as enormously brave and really inspiring in a way that I didn’t realize had affected me so much until very much later. This had all happened a long time ago and I thought that many of those voices of those kids had gone from my memory, but I began dreaming about them and I always heard their voices.

Benson: Those voices prompted Seamon to write a young adult novel called Somebody Up There Hates You. Its two main characters, Richie and Sylvie, are the only teenagers in a hospice, facing death by cramming as much life into their days as they can.

Seamon: Some people who have visited hospice units or had family or friends in them think of them as places that are very quiet and very still and mostly full of very elderly people. But they’re not. They often are, and we don’t want to talk about it much, but they’re often young people in hospice units. What I wanted to do here was have the young couple, Richie and Sylvie disrupt that kind of staid, very quiet atmosphere, which they do as teenagers. I think they bring a real sense of life to the staff. So sometimes the nurses and the other people who are caregivers in the hospice unit really stretch the rules and really let things go on that maybe shouldn’t so much medically be done, but they are charmed by the fact that this young couple on their floor falls in love and they begin to root for them, and they actually help to bring the kids together.

Benson: When people hear that Seamon’s story is set in a hospice, they assume it’s a pretty depressing book. But she says it’s not, and in some ways that’s the point. We can all learn from teenagers who live for the moment.

Seamon: I’ve even had to tell audiences at readings that it’s okay to laugh. I think that the book has many funny moments. I think that the narrator’s voice, Richie is perceptive and rye and funny and sometimes kind of sarcastic and snarky. He’s a seventeen-year-old boy who has a little bit of an attitude. But I think that is true to life. I have spent a lot of time in children’s hospitals with very ill children, and they are universally pretty much funny, smart, a little bit smart mouthed, a little bit raunchy, but they are full of the kind of energy that just continues no matter how ill they are.   

Benson:   Seamon says some of the hijinks she saw in the hospital, and included in the book, were pretty unbelievable. Much of the time the staff looked the other way.

Seamon: My own son was often one of those wheel chair racers and he had all kinds of adventures, probably things that would be best I had not known about, and some of then I didn’t until quite a bit later. But I do think that it’s a real testament in some ways to the humanity of the nurses and the medical staff who treat ill children that they are often able to allow them to be kids. That makes a huge difference in the whole feeling of the place.

Benson: Perhaps the nurses let all that go on because otherwise, the grief would be so hard to bear. Seamon’s son was one of the lucky ones who lived… And her book ends before we ever learn Richie and Sylvie’s ultimate fate. But Seamon doesn’t shy away from parents driven crazy by the prospect of losing their child.

Seamon: I have seen it and I understand it on a very deep level. I think most adults reading the book, and certainly a lot of teenagers will also understand it, that Sylvie’s father – he is out of control. He’s doing some very awful and dreadful things, but I think that we see it as coming from a raging grief that he has over his daughter’s illness and that he can’t help her. I see that as something that can very truly drive a person right over the edge.

Benson: In the children’s hospital, Seamon saw repeatedly that sick teenagers don’t think about their mortality, while their parents can think of little else.

Seamon: It’s a terrible thing to watch, to be there, to see. I think one of the things that my son and I actually talked about as he did grow up was that when we came home from a long stint, in what was then called Baby’s Hospital, Columbia-Presbyterian Medical Center in New York City, we felt a little bit like combat veterans. It was hard to come back to real life because the life in the hospital is so intense. Every decision is, or can be, a life and death decision. So it was be hard to come back to a world where parents were very very worried about whether their kid got to play second base in Little League. That sticks with you. I think that kind of experience shapes you.      

Benson: But does it take such an ordeal to learn wisdom, kindness and caring, as Richie does? For her teenage reader’s sake, Seamon hopes not.

Seamon: That is part of his growing up. For me that’s what makes the difference between the Richie in the first chapter, who’s a prankster and has a great time, and the Richie toward the end of the book, who has learned to respect the fact that he is not the only person in the world suffering. He has learned something about other people. He begins to see the other patients, no matter how old, on the hospice floor as people, as human beings. He has tried to do a little something for his mother even if it’s in a kind of crazy way. He has begun to see beyond himself. I think that for anyone of any age, that’s a sign of having gained adulthood. I really do think of Richie as a boy at the beginning and a young man by the end.     

Benson: If there’s a lesson Seamon tries to convey, it’s that no one knows how much time they have. So, even when things seem bleakest, there’s still time to spread joy. You can find out more about Hollis Seamon’s book, Somebody Up There Hates You through her website, h-o-l-l-i-s-s-e-a-m-o-n-dot-com. Our production director is Sean Waldron. I’m Nancy Benson.

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