Regine's Book

by Regine Stokke

  It wouldn't be hard for me to fill whole notebooks with more stories like this, with Regine always in the starring role. When she was around eleven or twelve, she became somewhat shy, and started to move behind the camera instead. She became interested in taking photos and making movies. She and her friends were particularly fond of making horror movies. They used to head to the forest, and with Regine behind the camera, they made such classics as The City Witch Elvira. Regine got help from her dad and edited it and added sound effects, and it turned out to be a really well-done movie.

  Regine had just turned three when her little sister, Elise, was born, and I remember her first visit to the newborn unit. She was glowing with happiness when she held Elise in her arms and sang children's songs to her. My belly was still a bit big, and Regine wondered if there was another baby in there…Regine was never jealous of Elise and was a kind and caring big sister. Regine said that one of the worst things about dying was that she wouldn't be able to support Elise while she was a teenager, and that really says something about how much her sister meant to her.

  I think I can honestly say that Regine was a truly good child. She was always happy, kind, full of understanding, fair, agreeable, and hardworking. But we got a surprise two days before Regine was due to start high school. She was out with her friends Eli Ann and Anne Marthe, and it was eleven at night. Her father called to find out where they were. Regine told him that they were out by the lake grilling fishcakes. Regine had trouble pronouncing the word “fishcakes,” and we realized they were drinking. We were shocked. Not in our wildest dreams could we imagine that our “angel,” who (we thought) could never do anything bad, could be out drinking with her friends. It turned into a big to-do, and we made it very clear how we felt. We could safely say that the “good child” period was over…Later, Regine told me that she'd been to a lot of parties after this, and that we never noticed anything. I only believed good things about Regine, and that probably blinded me a bit.

  After she'd been in high school for a while, she got a boyfriend, and we weren't very happy about that either. He was handsome—it didn't have anything to do with that—but he was also a bit older than she was, and he lived in a studio by himself. It probably lasted five months, and I was relieved when it was over.

  After Regine got sick and died, though, I began to see things differently. Now I'm glad that she had the experience of being in love, going to parties, and having fun. She went on a language trip, and got to go to concerts and festivals with Eli Ann and Anne Marthe. She got to experience a lot before she got sick, and for that I'm glad; it was a consolation for Regine when she realized where things were heading. Regine talked about these memories a lot when she was sick.

  Regine loved shopping for clothes, and she was right in her element when we took a girls trip to London during Easter 2008 with Aunt Anne, cousin Fride, and Elise. Oxford Street was like heaven on Earth for her. She could check out the new offerings at Top Shop and go to other stores that we just don't have at home. It was a lot of fun. She decided where she wanted to shop before we left and took the lead and got the rest of us to come along. She liked leading the way and getting clothes that nobody else was wearing yet. She had her own way of putting together outfits that really worked. We went to see the musicals We Will Rock You (with music by Queen) and Les Miserables. We especially liked We Will Rock You and it was a fun experience for all of us. You aren't allowed to take photos at the show, but Regine couldn't restrain herself and clicked away anyway. To my embarrassment a guard even wound up reprimanding her. We strolled around beautiful Notting Hill and looked for the bookstore from the movie, which we eventually found. We really enjoyed ourselves with good food, good conversation, and a lot of laughs. After three days of going almost nonstop day and night, Aunt Anne and I were totally exhausted. Nonetheless, we'd had such a great time together that we started planning our next trip, either to Barcelona or New York, almost immediately. But things didn't turn out that way. That was the last trip Elise and I took with Regine while she was healthy, and it's a precious memory for us.

  Regine wrote in a blog entry that it would have been better for her family if she had never been born at all; that way, we could have avoided the sorrow. I was so sad when I saw that, because how could she ever think that? I could never imagine life without her. I still can't! She and Elise are the two best things that ever happened to us. Think of all the great years we've had! Think of all the love, happiness, warmth, and pride she gave us—nothing can compare to that. These memories are stored away in our hearts like priceless treasures. I told her before that it would be unbelievably painful for us to keep on going after she's gone, and that we'll grieve and miss her so much. But this is something we've got to learn to live with, and that over time the pain will get less intense. Eventually I think we'll only feel joy and be grateful for all the great memories we've had together. But we're always going to miss our precious darling.

  When Regine was sick, it was a tumultuous time, filled with highs and lows, laughter and tears. Powerful feelings for Regine flared up in me, and in some ways it was similar to when she was little—when we had a basic and profound dependence on each other. The only real difference was that I wasn't nursing anymore.

  After her relapse, we knew it would be difficult for Regine to ever get better. But as long as the doctors were willing to try new treatments, we had some small rays of hope, and we managed to be positive and encouraging. After Regine got sick, we saw new qualities in her that we didn't know she had. She went from being a typical, self-absorbed youth who thought friends were more important than parents to a person who really cared about others and showed a lot of concern for everyone around her. She wanted to encourage and help other sick people, even while she was busy fighting her own battle. She also had courage and a strength in her that I didn't realize was even possible. It turned out that she was the strongest one of us right until the end. We knew that she was a good writer, but we never could have dreamed that she would be able to give so much of herself through her writing. It all seemed to come out of her so honestly and sincerely, and I think that's why her words resonated with so many other people. But still, her fame is still kind of unbelievable even today.

  In the same way, her photos developed a particular expression that reflect her feelings about the situation she was in; they're so naked and sensitive. I think that she wanted to create something lasting so that she would be noticed, and so that when she was gone she wouldn't disappear completely. I think that's also why she agreed to talk to the media, and worked so hard to recruit blood and bone marrow donors, and help other sick people of course. And the reason that she really wanted her blog to become a book—so that she would be somebody, both a photographer and a writer.

  Regine also liked to help when the doctor in charge at Children-4 in Trondheim visited on Thursdays with new medical students. She told them about all the symptoms she'd had before her diagnosis and answered questions frequently. The doctor in charge bragged about how good she was at mediating for him and providing instructive insights for so many future doctors. Regine was really bright and taught herself a lot about the disease, blood values, medications, and other technical terms used by doctors. Sometimes she could sound like a fully trained doctor, and she herself claimed that she knew more than certain doctors she met along the way.

  My solace in the sorrow I feel is the strong bond that developed between us. Regine and I developed a closeness that I think would be difficult to experience with another person without being in a situation like ours. I'm so grateful to Regine for letting me get so close to her. It was a closeness that was so full of warmth and love for each other. It's hard to describe in words what this means to me; it means so infinitely much. She showed so much confidence in and openness with me when we stayed up late at night talking, often while I massaged or stroked her back, feet, and arms. (She liked that so much.) It was obvious that she needed to talk about everything: politics, family, her disease, death,
and even the most personal things she experienced at parties and with friends and boyfriends. But as she said before she died (with a clever grin on her face), she had kept some of her secrets…

  And we had such a great time watching One Tree Hill! Both of us were hooked, and watched all the episodes twice. On her worst days, it was comforting for her to escape reality and watch an episode or two. Two days before she died, we watched Episode eleven of the seventh season for the last time together. In early January I watched Episode twelve alone, and sobbed and cried for forty minutes. It was awful to watch it without Regine. I could see Regine in front of me where she used to sit on the sofa and it felt like I could almost touch her. It sounds dumb, but I felt that I had to keep watching the series in case Regine is still with us in some way, so that she can also see the rest of it.

  Closer to the end

  During the last month, Regine's stomachaches just got worse and worse. The only thing that helped was getting big doses of painkillers directly from the Hickman line (intravenously). To solve this without having to admit Regine to the hospital, we asked her doctor at the Kristiansund hospital if we could learn how to do it ourselves, so that we could give her the necessary painkillers at home. And after we were skillfully trained by Regine's cancer nurse, we were allowed to do it. From then on I slept with Regine at night. She was calmer and more relaxed now that she knew she had painkillers on hand that would work immediately. After a while she had to have painkillers more often and in stronger and stronger doses. Since we knew how to administer the painkillers, we were also able to give her antibiotics and manage her blood transfusions as well. This wouldn't have been possible without the amazing kindness of the Cancer Polyclinic doctors and nurses. They provided the help we needed, and were available around the clock if we ran into any difficulties. We wanted to do all of this for Regine to make her as comfortable as possible. We were so exhausted in so many ways, but we put all we had into making life as pleasant as possible for her. As Aunt Anne said, she'll never forget the atmosphere of security, calm, and quiet at our house over the last weeks of her life.

  During the last week, she had two pumps attached to the Hickman catheter, one with painkillers and the other with sleeping medication, and those lines worked nonstop around the clock. That way she could push a button every time she needed an extra dose of painkillers, and it made things easier for all of us. Even though she was on high doses of painkillers, her pain never went away completely and Regine got more and more exhausted. Every day during the last week she would say that she could feel it in her body that she was going to die. During the last two or three days, she mostly lay in her bed and we noticed that she started breathed heavily and that it became tiring for her to talk. That's when we understood that it was almost over. Regine managed to talk with Elise and gave her her Dolce & Gabbana watch. She wanted Elise to engrave the back so that it said: “To the world's best sister, from Regine.”

  The last evening she was alive, her breath was even shorter than usual. She got so much worse in such a short period of time that when Grandma and Grandpa came to visit, it was painful for them to see her (even though they'd only just left three days before). We all cried. Earlier in the week, at Regine's instructions, I'd bought a piece of friendship jewelry with a white gold chain engraved with “Thank you, Regine” on it. Regine really wanted to give the piece to her best friend Eli Ann, and surprised us all when at around seven, she said she wanted to try getting up. Regine called Eli Ann, who didn't hesitate and came over right away. It was always like that with Eli Ann. As soon as Regine called and was up for company, Eli Ann would come over. Regine used all her strength and went into the living room to give the piece to Eli Ann. They sat talking for a while, but after half an hour, Regine was totally worn out and had to go lie down again. I heard Eli Ann say to Regine, “Maybe I won't see you again,” and they hugged each other and said goodbye for the last time. It was so sad.

  After Eli Ann left, I asked Regine if she wanted me to give her a bath since she hadn't been able to take a shower for a few days. She said yes, and I washed her from top to bottom. Regine smelled like lavender soap all over. Again she showed me the greatest trust she could give me. I know Regine is naturally shy, and her body was the most private thing for her. She was so content, happy, and also calm and relaxed before going to bed, and then she told me she would probably sleep for the rest of her life. As her doctor had advised, we increased the painkiller dose so that she could sleep at night. I lay listening to her breathing and couldn't sleep. Regine slept well, but her body worked hard to breathe. Her chest rose and fell, and at the same time there was a wheezing sound. At seven in the morning, she suddenly got up and needed to use the bathroom. She was really drugged and didn't remember the pumps she was attached to. So I had to rush to carry the pumps and support her at the same time. She got to the bathroom, but couldn't hold herself up. “Hold me, Mom, I'm dying now,” she said. I supported her back into bed and decided I would read the advent messages to her.

  I'd made an advent calendar for Regine with heart-shaped cards filled with beautiful verses for her and lots of comments about how much she's meant to us. I really wanted her to hear all of the hearts before she died. When I started reading the eighth heart, she said her last words to me: “Stop fussing.” She was tired and wanted to sleep. She didn't wake up after that, and died quietly and calmly several hours later. When she passed away, she was in my arms with Dad, Elise, and Josefine by her side. I had my hand on her heart, and I felt her heartbeat getting weaker and weaker until it finally stopped. Then Regine calmly inhaled twice, and with that the life was gone from her body. It happened so easily and just like Regine wanted, totally without pain. Regine's long hard fight was over; the worst had really happened. It was so unreal, and we just sat by her bed for a long time, crying and crying. For those who have read Ida's Dance, Ida's last words to her mother were, “You're pretty”—whereas Regine's last words to me were, “Stop fussing.” But I think it's funny, and I laugh inside when I think about it. It was so typical of Regine, to be a little harsh without meaning any harm.

  The family members who lived nearby came to our house as soon as they found out. Aunt Anne helped me take care of Regine and change her clothes. We put on her favorite everyday clothes. A lilac-colored T-shirt, gray sweatpants, a black knit hat, and the wool socks that Martin's mother had knitted, with Regine's name on them. My father laid a rose between her hands, and she was so beautiful lying there with a knowing smile still on her lips. A flickering light on the table cast a beautiful light over her face.

  Just like when she was born, I couldn't look at her enough. I didn't know it was possible for a dead person to look so beautiful and happy. She lay in her bed for three days, and it was so good to have her there, to be with her, talk to her, and touch her. The funeral home put her in the coffin with her lilac pillow under her head, and her blanket over her. We put things in the coffin that meant a lot to Regine, as well as photos of the family, a photo of Josefine, and some teddy bears. Then it was time for them to close the coffin and take her away. It was so agonizing, so painful for all of us—and my reaction was so much worse than on the day she died. Now she was gone physically too and we would never see our lovely daughter again. I couldn't stop crying.

  Once, as a joke, Regine asked me if we could get Wardruna to play at her funeral. We laughed and didn't think about it much after that. Lasse and I played the CD and listened to what Regine had picked out. What if we could get them to come here, just like Regine had joked about, I said. Lasse took me seriously and called Einar Kvitrafn Sevik from Wardruna in Bergen. The funeral was in three days, but they managed to gather the troops, and the only thing we had to pay for were the plane tickets. It didn't seem real, and we were so happy. It meant so much to us to be able to fulfill this dream of Regine's. We found out that Wardruna was actually going to play for Regine at the Fosse concert in Valsoybotn last summer, but it didn't happen because Regine was sick at the time. So it
felt right for them to come, even if they usually didn't play at funerals. If only Regine knew that her favorite band came to play for her, or maybe she found out—who knows?

  The funeral service in the big living room at Kristiansund's Festiviteten on December 9 was moving, beautiful, and special. The coffin was gorgeously decorated. This is where Regine had done so many dance performances over the years, and this is where Regine's dance instructor, Anett Hjelkrem, had a full house sing happy birthday for her in English—a big moment for Regine, Lasse, and me. Now Wardruna was on stage next to her coffin. The performance opened with the powerful sounds of cascading water and birds from the song “Laukr.” It has the lyrics: “Laukr is water, tears from your eyes, mountain waterfalls, drops from ice, waves on the water.”

  Afterward, there was a remembrance by Berit Jorgenvag, a moving dance by Marte, Vilde, Maren, and Nathalie from the Kristiansund Dance Studio, and the song “You Are the Best” by Hanna Malm Erdtman. Then Bengt Eidem gave a speech, and we closed with Wardruna singing “Dagr”—which features the words, “I salute the sun. Rise up from the dark, rise up today.” It turned into a beautiful, moving, almost mystical goodbye for us and the 400 to 500 people who came. It was a powerful experience that suited Regine perfectly; it turned out to be exactly what she would have wanted. Gunnhild Corwin (who wrote Ida's Dance) sent us a poem1 that she was given many years ago, and that she felt suited Regine really well. It was read near the grave: