To Live

Written by Rachel

In the future.

"We knew it wasn't going to be easy to get the second remission."

Charlie could hear the words coming out of Dr. Rabin's mouth, but they seemed somehow disembodied. The return of the cancer, the chemo, the bone marrow transplanted from Julia, each time they had tried something new he had tried to remain positive and hope for the best, but this was it . . . the end of the road.

"There really isn't anything else we can do. I know you want to get home, so I'm going to give you a referral to Bay Area Hospice. They can get you set up at home with the equipment and nurses. I am presuming that you want to do that, go home."

Charlie looked at her with a blank stare. He still wasn't comprehending it all.

"Yes, that's what we all want. What do we need to do?" answered Julia.

The conversation continued but Charlie only heard bits and pieces. A nurse from the hospice would come and talk to them and then he would be able to go home . . . home to die. Julia was taking notes. She had really been incredible. She'd taken care of the kids when he couldn't, the bone marrow. She'd really grown up. The doctor left and Julia came over to his bed.

"This is what you want, isn't it? Because we don't have to take you home," Julia said.

"No. I want to go home. It'll be better that way, for Owen, for all of us," Charlie said weakly.

"Okay, then that's what we'll do," Julia answered.

The hospice nurse's name was Jean Swenson. She was in her mid-fifties and had returned to nursing after her family had grown. It was clear from the first time that they met her that she would be a large part of making his last days easier for everyone. She had explained the hospice program. She would come as often as needed, first every couple of days and then every day when it got closer to the time. There would also be volunteers that could help out with Charlie's care. It was hard for him to get around now, he was very weak and their house was not well-suited for an invalid. She made arrangements for the hospital bed to be set up in the dining room, a wheelchair to get him around and other medical equipment to temporarily convert their house into a medical facility.

"The volunteers are an important part of the program, but we also call on family and friends to help with the patient. What kind of support will we be able to expect?" Jean asked Charlie and Julia.

"We'll all be around," Julia answered. "My brothers Bailey and Owen, Kirsten and Sarah and my sister Claudia, she'll be there, too."

"No, Claud doesn't have to come home," Charlie protested.

"I'm sorry, Charlie. I talked to her last night and she's on a plane right now," Julia answered.

The ride home was a blur. Maybe it was the medication. Bailey was there and Julia and then Kirsten at the house. Was she there all the time now? Jean, the nurse was there too, helping him out of the car and into the house and then into the bed in the dining room. Strange how they had turned it into a bedroom again all these years later.

There was a sound at the door and then the room was full of people. Claudia was home, home from college. She was sophomore at the Berklee College of Music in Boston. Weird, he'd gone to Berkeley and now she was. She was so grown up.

"Hey Char! What have you been doing with yourself?" Claudia asked as she sat down on his bed and took his hands. "Nice hairdo." She hadn't seen him since he had lost most of it during the chemo. He usually covered it with a bandana, but now it didn't really seem like it was worth the effort.

"You didn't have to come home. You have school. When's your spring recital?" Charlie asked.

"It's not for a while and I wasn't not coming home. This is the final leg of the journey, Charlie. We all have to be here, it's the only way it's going to work," Claudia answered.

The door opened and closed again. Owen was home. Charlie heard voices in the hall and then his brother appeared with Kirsten.

"You're home," Owen stated.

"Yeah, no more hospitals. How does that sound?" Charlie asked his brother. In fourth grade now, he had grown-up so much Charlie hardly remember what he'd been like as a baby.

"Sounds good. We won our game today. Sarah came and she cheered really loud. The ref had to make her be quiet on a timeout once," Owen said. He was on the traveling soccer team for his elementary school.

"She's loud, but she does a pretty good job, don't you think?" Bailey interjected.

"Yeah, I guess marrying her was a pretty good idea," Owen said. Bailey responded by first tickling and then throwing his little brother up over his shoulder and carrying him off to take a shower.

It was later, the room was dark and it was quiet. There weren't that many times that it had been this quiet in this house. Charlie stirred in his bed. Kirsten got out of her chair and came over to him.

"What's the matter? Do you need anything?" she asked.

"No. What are you doing here?" he asked.

"You know I'll always be there for you. I'm going to be here now until the end," she said softly as she sat down next to him. "I don't know what happened with us, but I know one thing. You are my soulmate, Charlie. I don't want to be anywhere but with you. You and this family have meant more to me than anything else in my life. Don't worry about me, I'm going to be okay, but I'm also not leaving you. Not until I have to."

"I was an idiot. So many things I screwed up," Charlie said.

"No, it just happened that way. Look at what you did here. You have raised a beautiful family. Bailey has flourished the past few years with the restaurant and Sarah. You knew how to handle Julia, to let her find her way. If you had pushed her into going to Stanford that first year, who knows what would have happened. This way she made the decision, it was hers and she did it. I think about Claudia and all of the changes she's had to go through. You have helped her grow up into a very well-adjusted young adult. She is so gifted and Owen . . . Charlie, he's your greatest triumph."

"Yeah, I just . . . " Charlie broke down.

"It's okay to be sad about leaving them. You should tell them that. They need to hear it," Kirsten said as she ran her hand over his head. He was feverish all the time now as his body continued to weaken and lose its ability to self-regulate.

"I know," he answered. They sat silently in the dark until his breathing became even and he drifted into sleep.

He felt better being at home. It was also easier now that he had accepted his fate. Jean, the hospice nurse, came early in the day to help him get ready. When the sun shone he went out into the backyard and on days like today when it was foggy and cold he stayed in bed. There were people in and out of the house, but not so much that it was overwhelming. Bailey and Sarah had given up going home at night and were taking up residence in his old room. It was good to have Claudia home. She had been so upset when he had first gotten sick, but after five years of the disease coming and going they all seemed to have come to an understanding. The sound of Owen in the hall pulled Charlie out of his stupor.

"Hey, Charlie. Are you awake?" Owen asked as he came into the dining room.

"Yeah, come here, Munchkin," Charlie said patting the bed.

"You're not supposed to call me Munchkin anymore. I'm 5'2" now," Owen said in a mildly annoyed tone as he crawled up on the hospital bed.

"I'm sorry, it's just that you'll always be my Munchkin. What do you have there?" Charlie asked as he pointed to the papers Owen had clutched in his hand.

"It's an essay we had to write at school. It's about someone we respect. It's part of that gang program we have on Tuesdays. The police guy said we should write about someone we respect, because looking up to them is a good way for us to respect ourselves and then we won't get into trouble," Owen answered in a very serious tone.

"Sounds like a good idea. Who'd you right about?" Charlie asked.

"You," Owen answered. He looked at Charlie shyly and then smiled. He handed the paper to Charlie. As Charlie began to read, his eyes filled with tears.

When I had to pick somebody I respect the most it wasn't too hard. I respect my brother Charlie because he has always been there for me no matter what. He's not just my brother, but he's also my dad because my mom and dad died when I was a little baby. My brother Charlie moved to my house and took care of me and my brother Bailey and my sisters Julia and Claudia. My sister Claudia said he wasn't a very good dad at first, but he got a lot better. When I was little he would take me to the library for story hour and sometimes I'd get to go to his restaurant and help him work.

I respect Charlie because he has taught me how to be a good person. He taught me about sharing and being nice to other people. At his restaurant he lets people who don't have anywhere to live come in for supper sometimes and he gives his extra food away, too. He also helps build houses for people who don't have one.

Charlie came and took care of us but I think that made his life kind of hard sometimes, but he never complained to me. He helped me learn how to ride a bike and he taught me how to play soccer which I'm really good at. I respect him most because he's been really sick, but he always tries to talk to me when I come home from school or before I go to bed. I love my brother Charlie and that is mostly why I respect him the most.

"Owen . . . that's beautiful. I . . . " Charlie couldn't continue. His brother hugged him and then got up and walked into the kitchen. As he left, Sarah came into the dining room.

"What's going on in here?" she asked. "Can I get you anything?"

Charlie handed her the essay. As she read it a smile spread across her face.

"That's wonderful. You must be so proud, Charlie. He's such a great kid," Sarah said as she handed the paper back to him.

"I don't think a father could be prouder," Charlie answered. Then he turned more serious. "About Bailey, I hope I can count on you."

"How do you mean?" Sarah asked.

"He's going to need you more than ever. He's going to have to be strong for all of them and I just have to know that there is going to be someone there for him. You're going to do that, aren't you?"

"You know I will. Don't even give it another thought," Sarah answered as she smoothed his brow.

"Good," Charlie answered.

He was getting weaker. It seemed like he was unaware of what was going around him more and more. They had a family party for Owen's birthday. Charlie was able to get out of bed for a little while, but left before the cake was served. As the party continued, he lie in his bed listening to them in the kitchen.

"Hey, do you want a piece of cake?" Julia asked as she came in the darkened room.

"No," he answered. "I'm just lying here listening to all of you. It's great. I think Owen liked his party, but you give him another one, with friends. He needs that."

"I know. Don't worry, we'll do it, Charlie," Julia answered. "I'm sorry this is happening. I thought . . . I thought the transplant would work. I feel like somehow, I've failed you. I'm sorry."

"You haven't done anything wrong here. It was a long shot, we knew that. What you've done, the most important part is you've helped this family stick together. You helped Claudia and Owen when I couldn't and in ways that I couldn't. That's the stuff that's really going to make a difference in the long run," Charlie said.

"Thanks, Charlie," Julia said as she leaned down to kiss him. "Are you sure you don't want any cake?"

"No, but thanks," he answered.

The end was coming. There were so many things to be discussed, but it never seemed like the right time. He needed to talk to Bailey, but Bay was busy with the restaurant and Sarah and Owen. He had to make sure that they made the time.

As Charlie woke up he knew that Bailey was sitting in the chair next to his bed. He could sense it. He rolled on his side and faced his younger brother.

"So, have you been avoiding me or what?" Charlie asked.

"Not avoiding, just putting off," Bailey answered.

"We need to talk," Charlie stated, "and I know you don't want to hear this, but there isn't a lot of time to spare."

"I know," Bailey answered. "The restaurant, the house, Owen, the girls. There's a lot to talk about."

"Yeah, that stuff's important, but we've got other stuff, too. In so many ways you've been the man of this family for years. I don't know if I get into that whole Thead of the household' thing, but you held it together for a long time when I didn't know how," Charlie said. He paused and then began again, "I need you to do it again. Can you?"

"You know I'll do whatever you need," Bailey answered.

"I just need you to be there for them. Jule's been great, but it's going to be really hard for her after I die. Claud might lose it again. I think she's ready, but I don't know and Owen, he's going to need you more than ever. Can you clean up my mess again?"

"This isn't a mess you made, Charlie. This is life," Bailey answered. He moved to hold Charlie as they both began to weep.

The last days moved by in a blur. Owen sitting next to him reading stories. Claudia playing the pieces she had prepared for the recital he wouldn't be able to attend. Bailey carrying him upstairs to the bathtub. He had grown so small it didn't even require much extra effort. Julia rubbing his bony back telling stories about when they were young. Kirsten holding him all night when he couldn't sleep. Other people slipped in and out. Joe and Frannie were there, people from the restaurant. Dudley came and left without even coming in to see Charlie. Everyone dealt with death in their own way.

Jean had stayed one night when Owen had an open house at school. She helped Charlie get comfortable, adjusting his pillows and massaging his calves which seemed to be cramping all the time.

"How do you do this, work with people who are dying?" Charlie asked.

"It's one of life's miracles. To have life we have to have death. To be able to allow people to die in their own homes as comfortable as they can be, I think that is a gift. I feel really grateful to be able to give that gift," she answered. "How about you? Are you feeling prepared? Is there anything that you would like to talk about, that you can't with your family?"

"What will it be like?" Charlie asked quietly.

"Most likely you'll drift away. You'll have a sense of being here and then you won't. It's not unlike the sun setting. Your body is shutting down slowly and in some ways that makes it harder, but in so many other ways it's better because you've had this time to prepare yourself and the others. I've seen a great number of families go through this process. They seem as ready as we can help them to be."

"You think they'll be okay?" Charlie responded.

"It's going to be hard. They are losing someone very important, but it doesn't seem like you've left a lot of loose ends here. I've seen you making a concerted effort to have the important conversations with each of them. That's something you didn't have when your parents died. This will be a different kind of grief process because some of it has been happening now. Owen is young, but he is going to have good memories of you, even now at the end. The others, they've been able to say the things they needed to say. They'll be okay."

Charlie nodded, once again feeling reassured.

At the end they were all there: Bailey, Julia, Claudia, Owen, Sarah and Kirsten. All the people who mattered in his life except his parents and he would see them soon. He could feel their touches, the sense of pulling away, the love . . .

Charlie sat up with a start. He looked around the room not quite sure where he was. It took a moment but he recognized he was in his own bed in his room. It was a dream. A very realistic dream, but a dream after all. He got up and went down to the kitchen to get a glass of water. As he started back to his room, he noticed Julia sitting in the dark in the living room.

"Hey, what are you doing up?" he asked.

"Thinking," she answered.

"At three a.m.?"

"Well, sometimes that's the best time. What about you? Any special reason for the nocturnal hike?" she asked.

He told her about the dream. As he retold it, the details seemed more clear. It was strange how he had been able to see Claudia and Owen grown up. And what was Kirsten doing there?

"This must be part of the adjustment phase," Julia said.

"What do you mean?" Charlie asked.

"The remission. You just found out you will probably be okay. It's like when you were in the hospital and you said you had to figure out how to die. Well, now Charlie you have to figure out how to live."

"I guess you're right," he answered. "Any other suggestions?"

"Go to bed," she responded.

He kissed her and went back up to his room. Figure out how to live. That one was going to take a bit more effort.