The Situation

by Francese, Glasoe Lila;

  “What can I do to help?”

  Chris arrives home, and Carolyn seems relieved. He looks disheveled from a very long flight and the drive back to Ojai. He has brought both Carolyn and me Korean bath products. Carolyn feels well enough today to have us move her to the family room. We place her on the cushy linen sofa next to the fireplace, where I light the fire and place one of the faux fur blankets made by our friend, Brian, over her lap. She has been very cold, and before Shelly left, I had her brew a pot of hot tea for Carolyn. Chris sits beside Carolyn, and she leans her head on his shoulder.

  “I want to call Al and Mary,” Carolyn says.

  “Okay,” Chris says. He opens his bag and picks up his phone. He dials Alan (at work). “Hi Al, it’s Chris. Lila and I are sitting here with Carolyn, and she wanted us to help her call you.”

  “Ok,” Alan replies. Not knowing what Carolyn wants to say, Chris has his iPhone on speaker and places it in front of Carolyn.

  “Hi, Al. I wanted to call to say goodbye. I’m done,” Carolyn says matter-of-factly.

  Silence… and Alan says slowly and finally, “I don’t know how to respond to that, Carolyn. I’ve never gotten a phone call like this before…but I understand, and I love you.”

  “Thanks Al. I’m just done,” Carolyn responds.

  “If there’s another side, I guess I’ll see you there?” Alan offers. “Yes,” says Carolyn, “‘Bye.”

  I am frozen. Chris is frozen. This feels surreal. I am crying but making no sound. Carolyn now asks Chris to dial Mary, her best friend from high school. It is apparent as Carolyn speaks she is also calling her to say goodbye. “I love you, Ladybug,” Mary says. This is the nickname they have always called one another. “Promise you’ll visit me if you can.”

  I know that both of these calls were devastating for the recipients. Carolyn has been sick for so long that these goodbye calls seem fictional to me, like part of the bad dream I’ve been trapped in for fourteen months. It’s why I am silently crying. I can’t yet ask myself how our lives will go forward without her. How can life be so cruel? When my mother arrives for her daily visit, I hear Carolyn tell her that she has been in bad pain for a long, long time.

  That afternoon, as she naps, I lay my head on her pink sweater, and I cry out loud. I tell her I don’t know how to live without her. I tell her she has been more than just a big sister. She has been a second mom. She knows all of my secrets. She has been my protector. She has been my safety net. I thank her for finding me my husband Dines and loving my daughter Fliss as if she were her own. She repeats, “Sshhhh,” and pats my head. Her cancer has affected her ability to show emotions. I can feel, with her hand on my back, her love for me. I steady my breathing with hers, like I did when we were little girls. I listen to her heartbeat. We fall asleep for awhile. When I wake up I check to hear if she is breathing, and I am comforted to hear a soft snore. I am grateful that the looming, dreaded moment of leaving us is not now… “Please, just a little bit more,” I say as I quietly shut the door.

  Chapter 42, Ojai, CA 2015

  UNIMAGINABLE

  Carolyn is so weak she cannot get out of bed without help. She is in my guest room and despite Chris repeatedly asking her if she wants to go to her bed in their now completed house, she refuses. “It is quieter there,” he says. Sounds annoy her. The children are still young and robust. I can see her fading away. Her hospice nurse visits daily and helps her manage pain medication. She’s on morphine for her pain.

  I can’t imagine what the end will be like, but I know we are near. My reading on the end of a glioblastoma patient’s life describes violent seizures, vomiting, long hours of coma involving loud gasping for air. I tell Chris I think we should move her across the street to save the children from having this in their memory. He agrees but only if I can convince Carolyn. I have had a few of these “come to Jesus moments” already in my life. My mother could not find the courage to tell my dad she physically could not care for him anymore when, at eighty-one, he quit walking and needed staffed care. Carolyn and I told him, together, what the next step needed to be. When our elderly cousin, Margaret, who had no family, had to move and have someone take over her affairs, Carolyn and I again had that difficult conversation. But this moment in time promises to be the toughest, because it will be about Carolyn, and I have to face it alone.

  That afternoon, Carolyn’s nurse comes to give her a bath, and I dress her in a long-sleeve white shirt of mine that she loves, and her light gray, very soft yoga pants. When I pull her shirt over her head, a large wad of hair falls out and lands on her lap.

  “Really?” she says in defeat. I notice her fingernails are changing color. They now have a purple shade to them.

  “Oh Sissy, your body is shutting down. You know that, right?”

  “I can’t do this. I never wanted this. I didn’t want this for …” she gestures her hand, inferring I should finish her sentence.

  “You didn’t want this for Matson,” I say.

  “Yes,” she says. “Sucks.”

  “Carolyn, I don’t want Matson to have this be tougher than it already is either, and I see your body failing in front of me.”

  “It’s done!” she exclaims.

  “Yes, your body is just done,” I say, trying my best to hold any emotion in as I continue speaking. “I think we don’t want you to be in the room next to Matson and Fliss if you keep declining. Your hospice nurse says you could seizure or fall into a coma. I’m worried it will scare them. Matson is still so little. Are you okay going across the street to your house if Chris, Dines, and I promise one of us will always be with you?” Carolyn looks at me for what feels like a very long time.

  “Ughhhh, I guess,” she responds, almost childlike in tone.

  “Okay,” I say. “I will make sure the bed is the way you like it.”

  That evening Dines and Chris carry Carolyn over to her bed. I have made it just as she would have, had she been able, with her fluffy, overly-stuffed goose down pillows, Frette Sheets that are her favorite – ironed, like she always did for guests. She has been very cold. I put an extra comforter and blanket at the end of the bed.

  As we ease her down, I say, “That feels good, right?”

  “I don’t care,” she answers. “I want to be over there.” She means my house.

  “I know, I know, but this is for Matson. You are such a good mom.”

  “Used to be,” she says.

  I can’t answer. The reality of the end is circling around me. “I’ll let you rest here with Chris and check in on you later. Think about what you’d like to eat, maybe. I can get anything you’d like.”

  “I don’t want anything. Not now. I want to go! Why can’t I go? How bad do I get?” she says. She means how much does she need to decline before she dies. My heart continues sinking. Carolyn runs her fingers through her hair, and some more of it falls out. She groans. “Ahhhhh…really?” She says in a high-pitched voice, full of desperation.

  I kiss her goodbye, and as I close the door I wonder, as I have the past few days, if this is a final moment. Our friends, Jon and Christian, have come to stay, and I will force myself to escape from reality for dinner with them. She needs time with Chris. Jon and Christian are a comfort for me. I am so glad Jon is a doctor and can explain, if needed, what is happening. Not having much of an appetite, we decide soup at the Inn up the road sounds good. Halfway through dinner, my phone rings. It’s Carolyn. “Soup. I want soup,” she says.

  “Mmmm, yum. Good, that’s what I’m eating right now,” I answer.

  “What kind?” she asks.

  “Tortilla,” I say.

  “Okay,” she says. I order soup to go. When I get back home, I walk it over to her room. I sit down on her side of the bed. Chris is almost asleep next to her, wearing earplugs and a hat. He doesn’t sit up. Carolyn cannot eat on her own anymore, so I slowly begin to feed her spoonfuls of soup. “Thanks… Mmmmm…Why am I still here?” she moans.

  “Oh, hush,” I whisper
. “Eat your soup.”

  “Seriously, Lila, this situation has to go.”

  “I know, honey,” I answer. The two glasses of wine I had with dinner make it impossible for me to hold back my emotions, and tears begin again streaming down my cheeks.

  “I’m going tonight!” she proclaims.

  “Okay!” I respond, pretending to laugh rather than cry.

  “Fuck, fuck, fuck! I’m fucking out of here!” she bellows, laughing too. The soup is gone, and I wipe her face, put the napkin in the to go container, and stand up to leave for the night. I kiss her forehead as I tuck her back in.

  “I love you, Carolyn. Sleep well.”

  “I’m so fucking done,” she says once again in a low tone.

  “I know. I know,” I say. She sighs. I kiss her again and hold her face.

  “Okay, Carolyn…get the fuck out of here. “

  The next morning Carolyn does not wake up. Chris calls us very early. She is in a coma and gasping loudly. We agree to send the kids to school as if nothing has happened, so we can spare them her final moments and figure everything out. I can see that Fliss knows something is wrong. She pretends to feel sick. After Matson leaves with Dines, Fliss immediately asks, “What’s happening across the street, Mom?”

  “Carolyn has slipped into a coma. Sometimes that happens before you die. She’s leaving us, honey.” I break down. Fliss embraces me.

  “Don’t worry, Mama. You have me.”

  “I do, my girl. I do… thank you.” We walk hand-in-hand across the street. Chris is pacing back and forth outside the house. This is too hard for him. He goes for a walk. I can’t leave my sister. No, I won’t leave. I touch her soft skin, and I whisper, “I love you. Oh God, I love you so much, Sissy,” in her ear. Fliss and I turn on Sarah Vaughn, Carolyn’s favorite, and we just sit with her, hoping she’ll suddenly sit up and sing along. Her gasps of air get louder and further apart. The discoloring in her nails I noticed days before looks like it is spreading to her hands and the skin around her eyes. I keep softly touching her forehead and her arm. I pull the blankets up and add an extra one. She looks like a blonde angel lying in her fluffy white bedding and wearing my white t-shirt. Dines stops in to say goodbye. If there is a moment in life when you know you love your spouse, it is this one. He is so loving and gentle now, as he has always been with Carolyn. He calls my mother and spares me the pain of informing her that her first-born baby is dying…my sister is DYING. Her magical smile and sharp laugh is gone. So much of her has been gone for months, but now the part of her that remains for us to hold is slipping away. The reality of life without a sister is unimaginable. I am afraid I will not survive this moment…

  I have been anticipating Carolyn’s death since the day of her diagnosis. But when, at last, this moment arrives, it hits me with intense force. There is no sense of the relief I may have expected. I am overwhelmed with deep, unimaginable loss and the brutal reality that she is gone from my life forever.

  EPILOGUE

  I wrote this book in the year and a half following Carolyn’s death. I wrote it in Ojai where we lived. I wrote in Minneapolis where we grew up. I wrote it flying across the country in a plane and on two other continents –in Switzerland and Kenya. No matter where I went, I couldn’t run from my memories of my sister and the grief of losing her. This book began as a journal of Carolyn’s illness. The day I first heard the word “glioblastoma”, I was unaware of what it meant. I never dreamed such a devastating diagnosis existed. When I began research, I couldn’t find big articles or books on Carolyn’s disease. I felt like I was swimming in an ocean of unknown depth and among unknown inhabitants. I hope this book will help inform those affected by glioblastoma. I hope it will give insight into the intense journey that follows diagnosis. This is also a book about sisters. A year into writing it, I realized Carolyn and I had been writing this book about sisterhood our whole lives. I am the one left with the ability and honor to share our story with the world.

  Carolyn Glasoe was nineteen years old when she started her first fine art gallery in her hometown of Minneapolis with business partner Kim Montgomery. Kim and Carolyn had met a local gallery where they were co-workers. They began their gallery with the belief that there was a better way to educate art collectors about supporting emerging artists, paying for artist’s work (first rather than last as a majority of the art world practiced at the time) and selling fine art with a strong secondary market value. They ran Montgomery Glasoe for six years. The Minneapolis art scene thrived at this time due to the concentrated art scene that had begun in the city’s Warehouse District. Carolyn believed that Minnesota artists needed to be recognized outside of the State before collectors, mainly other Minnesota collectors, would pay attention to their careers. In 2000, she co-founded the Dee Glasoe Gallery in the Chelsea Art District of NYC, taking many of the talents she had discovered in Minnesota on as her resident artists. Some of the artists included David Rathman, Rob Fischer, and Chris Larson. In 2002, Post 9/11, Carolyn returned to her home base of Ojai, CA concentrating on curating private art collections for her collectors around the world. She continued to support and encourage the artists she represented in Minneapolis and New York and countless others she had met along the way like Ry Rocklin, whose work she had discovered in Los Angeles and Charlotta Westergren whose work she discover at Art Omi. Carolyn served as Board President of the Museum of Contemporary Art Santa Barbara for many years and hosted many of their Art Openings. Carolyn’s life ended tragically at the young age of 46 after a year and a half battle with Glioblastoma brain cancer. She was mother to a beautiful nine-year-old boy, Matson West Bailey, and wife to entrepreneur Chris Bailey. In 2016, Her foundation, The Carolyn Glasoe Bailey Foundation, was started by her husband, Chris Bailey, and her sister, Lila Glasoe Francese, who serves as President of the Foundation.

  ABOUT THE AUTHOR

  Lila Glasoe Francese was born in Minneapolis in the 1970s and was the first Glasoe sister to leave the Midwest. She enrolled in SMU’s Meadow’s School of the Arts in 1990, where she was offered a full scholarship in their Bachelor of Fine Arts Program. She graduated in 1994, moving to Los Angeles, CA. In LA, Lila sold a screenplay (Peg & Shirl), provided character voices for animated television shows (the most notable Family Guy), renovated real estate, and ran the personal lives of producers, studio heads, and CEOs. Lila is the recipient of a McKnight Fellowship and the Wellesley Book Award (given to young women of leadership), and is also a graduate of Breck School. She appeared professionally in regional theatre in both Minneapolis and Los Angeles. Lila has been a long supporter of the arts, beginning her fine art collection in 1995 with the help of her sister, Carolyn Glasoe. Lila married Dines Francese in 2001 and gave birth to Florence “Fliss” Francese in 2004. In 2006 she and Dines began their design & home staging business OHI HOME, LLC. After the death of her sister, Lila helped found, alongside her brother-in-law Christopher Bailey, The Carolyn Glasoe Bailey Foundation. This non-profit art charity continues to keep Carolyn’s artistic enthusiasm, fierce generosity, and innovative spirit alive throughout the fine art world. Lila currently lives with her family in Ojai, CA.

  Carolyn Glasoe Bailey, 1969-2015