Sunday, March 31, 2013

"It is Finished"

Linda was diagnosed with pulmonary fibrosis three years before her death. As with her breast cancer diagnosis, she fought it hard and she gave it all she had. Much of the time she didn't know how debilitated she was becoming. In 2008, on the Tuesday of the week we were finally going to be able to be legally married, her pulmonologist told us she was terminally ill. We knew it beforehand. You Google PF, and what you get is "Life expectancy of five years or less. 60% die in the first three months." There was no doubt from the beginning what we were facing. But then it actually starts to gallop, and you are off to the worst race of your life.

The day we were married, September 6, 2008, it was hotter than blue blazes. Our church is charming, beautiful, historic- and has absolutely no air conditioning. It was close to 107 degrees that day. All week we had watched the weather forecasts, and all week they revised it upward. Our beautiful church baked all day in the merciless sun, and at 5PM it was an oven. But if you look at our pictures, you would never know it. Linda laughing with her brothers.The kids with their bouquets. Dancing. "YMCA" with the crowd. Our hands together exchanging rings, and saying vows we knew meant more than anything, ever. And an agreement with our minister to leave out "Till death do us part." And not a word to anyone that we had been told anything final that week.

I made sure Linda stayed in the cool of the Mission Inn as long as possible as I got other stuff done. We set up her oxygen in the kitchen. She had never ever had to use it before. I had it there because I was paranoid at that point. Who knew the O2 tank needed a special key and a connector or it will do no good? Not the social worker side of the family. Not at that point. It was a never to be forgotten lesson for me.

Half way through the evening, after the magic of vows, the beauty of the music, the love of friends, Linda was doing what she loved best- dancing. And then suddenly she could not breathe. I could see the panic on her face. I could also see her telling me not to tell anyone else. Don't ruin the night- just fix it! We got her into the kitchen, reached for the tank- and it would not turn on. The magic key was not on it. A church member who read the body language and followed us in ran to find a wrench. The tank opened. We had a tube, nasal cannula, tank- no connector. Linda was pasty white. She lost her balance. She sat. The kids came in. She managed to say she was fine. She wasn't. Kerry finally figured it out, and came in to say she was ready for bed. We had a sleepover planned for the four of us at the Mission Inn. In my family honeymoons are always shared. My parents took my aunt and grandparents. We took our kids. Kerry and Chloe guided Linda across the street with her cane for support, smiling all the way. The AC was cranked up, and we got the oxygen concentrator turned on- and it had all the pieces! What do I remember about our wedding? My beautiful Linda and the way she smiled at me. The music. The readings. The vows. Our kids and niece and nephew. Our flower girls. The toasts. The friends. The panic. The firm realization that Linda was going to die, and I could not stop it. And the room service dinner at midnight where we celebrated being a family, and where Linda could revel in her kids.

Eighteen short months later, not five years as we had hoped, Linda's fight was ending. She worked as long as she could. She snuck oxygen at work to keep working. She begged every doctor, every ER, every provider, to keep her here until Chloe graduated from high school. She gave me list after list of things I needed to take care of then and later: school for the kids; adopt Charity; watch out for Munchkin; make sure her family knew she loved them; make sure I was not alone; put the Angels on our headstone (not the ones with wings- the Big A); tell special people how much she loved and appreciated them; keep an eye on our nieces and nephews; send flowers; and on and on and on. She was up and active, and so ornery that even I had a hard time seeing the changes happening before me. Looking back at pictures now I am haunted by how much she was changing, and how, as a nurse, she had to know it. She took a picture in the car on the way from a hearing in court over Charity and looking at it now I can see how puffy she was. Her heart failure is so evident I could kick myself. But I was the wife- I just saw Linda. I took her to Roger's Gardens with my girlfriends, and she couldn't remember she needed her wheelchair, and then that we had to pay for purchases. We went to lunch and she fell asleep in her soup, and could not figure out how to use the bathroom. And she was blissfully unaware of all of it. As far as she was concerned she was still the same active, vibrant Linda she always was. I so wanted to believe that.

And then it just before Holy Week of 2010. Holy Week has always held drama for me. I have spent two Good Fridays in the Service of Darkness after having to hospitalize one of our kids. It's the week folks with mood disorders seem to lose touch with who they are and a good bit of reality. We were supposed to play poker the Friday before Good Friday with Sherry and Tracy and Connie at Connie's house. Two weeks before, when Linda was struggling with yet another lung infection her nurse ordered a hospital bed for the living room. I asked for that location, so she would have the option of using it to see the kids after school and to be a part of the neighborhood. Linda hated it. Purple passion hated it. She pushed the couch up against it to hide it, and refused to even look at it. For two weeks nobody touched that bed. Then that Friday morning, when it was just the two of us at home, she said "I think I'll just go try it out. I'm a little tired."

I should have known. I did hospice for a living. She was short of breath all the time. Her morphine intake was going up. She was at 5 liters of oxygen. I should have known. She never got out of it again. That last time she walked down our stairs, on her own initiative, was the last time we would share a bedroom. It was the beginning of her last week on this earth. And I had no idea.

She stayed in it all day. She told me she wished I had gotten the big screen TV I promised for over the fireplace. We were on a limited income and I'd put it off because we really could not afford it at that moment. Finally I saw what was real. "I'll be right back." I left Kerry with Linda, grabbed Charity, and we raced to Sears, where I had the open line of credit. Except because I hadn't used to they wanted five days to allow such a big sale. That was it. The salesman was ten years old, rude, and happy to make me wait. I was losing my wife. There was a culture clash. Think "Fried Green Tomatoes." "I have the card, and you will make it happen." "It's just a TV. You can't wait a few days lady?" The tears. The sobs. The manager rushing in to see what her ten year old salesman had done. "My wife. Hospital bed. Hospice. Movies. Kids." Suddenly there was a TV available. A better one. Bigger one. A sale. Someone to carry it out. Tracy and Trevor to pick up. A creepy Charter Cable guy.

And Linda never watched it. She would not let me cancel our old TV provider because she DVR'd so many shows. My realization that it no longer mattered was that morning. She wasn't going to get to watch them. But I could play her favorite movies, and she and the kids could share some Mama moments.

We played cards that night. Linda ate what turned out to be the last real meal of her life. Our best friends rolled to our house. They realized things changed. I was slow to catch on. I slept on the couch, pulled up to the bed. We held hands through the bed rails. Intimacy changes in terminal illness. But it does not disappear. At 5am we were in crisis. Linda was sick. Very sick. I called for help. The answering service was ugly, the on call nurse uglier. I called the private numbers for Linda's nurses that they left with us. At 5:30am Saturday Casper was at the door. Linda was so sick, and so out of it. And so began the final week. Palm Sunday was the next day. I missed church. The friends came. Work disappeared. Time evaporated. I flew dear friends in who needed to be there. I heard Linda's doctor, now a friend, saying "I thought we had more time. I was wrong. I promised to keep you comfortable. I promise I will. We'll have a glass of wine in heaven. Wait there for me." I held Linda as we cried that day. We'd known all those years. We were ready. But now it was the end. And we weren't. "I don't want to leave you. This really is it, isn't it?" We snuggled in the hospital bed. She smiled with those who stayed or visited. We laughed. We cried. The kids curled up with her- all of them, and Linda has not only our kids, but our niece and nephew, neighbors, nieces- they were hers. She loved them.

And then it was Good Friday. Linda was telling us movie trivia at 6am. At 7 she slipped into a coma. I held her tight. I mopped. I was afraid to shower, to leave her too long. Calls went out. Food was arriving. I stayed by her side. The dog and cat too. The kids and Kelsey and Trevor. The friends. My back was aching. My heart was too. I could hear the office calling Casper to see another patient. She'd promised Linda not to leave her at that point. The other patients waited. Then "You can turn off the oxygen now. It won't help any longer." What? For two years we had lived with oxygen ruling our lives. No high altitudes. Carry extra tanks. O2 keys in every car, in my purse, everywhere. We don't need it anymore? "She's past needing it. She's passed over. Her heart hasn't caught up yet. She's too young." Damn right she's too young. She's 58. That's way too young to die. She wanted to see Chloe graduate." "I know she did. She'll be there. Just not in this form." Apparently I said it out loud. "She's in heaven already. She's just so young."

And she was. I kept talking to her.I prayed. I counted her breaths. She was just so young, damn it. Her brain and heart, as damaged as they were from the ravages of pulmonary fibrosis, chemo, heart failure... they forgot to stop. I didn't ever want ot forget the feel of her warm fingers in mine. But they were losing their warmth. The cat kept moving in closer. The dog whined. I held her close, making every memory I could, telling her to go to her parents, to Mari, who visited that week several times to tell her she was coming for her, to my dad, who loved her immensely and wanted this terrible disease not to be real for us. One hour, two, three. I kept thinking I wasn't supposed to think about me. My wife was dying. But I was so tired. Her breath was irregular and hard to listen to. I never wanted this to end. And I could not wait for it to be over. This was not my Linda. My Linda danced, and sang off key, and laughed, and played ball, and rooted for the Angels. My Linda never wanted to be in a hospital bed. Ever.

And then, suddenly, there was no more. I looked up. I knew. The sun was shining, the roses were blooming, and my Linda was gone. The first words I thought of were those of Good Friday: "It is finished."

That day my faith was challenged. How does God allow such an incredible person to die such a death at such a young age, with kids who needed her still? What about me? The answer, as I sat in the sun outside as Linda was dressed for the last time in her Angel's shirt and cap, was that her time here was done. But our time, and our love, was not. Her love for our kids was not. Her plans for us were not. It absolutely stinks to have your wife die on Good Friday. But that Easter promise means more. It is who we were, it is what I lean on now with Casper being sick. It is finished is only for now. Tomorrow morning will dawn bright and sunny, there will be flowers on the empty cross at church, we will celebrate family and friends, and the love we share. And we will live that Easter promise. I will get up and sing the Hallelujah Chorus at the end of the service, and hope I will not cry during "Christ the Lord is Risen Today." I'll hear Linda singing off key as loudly as she can to the alleluias in that hymn. And I will know it was finished, but there is life ever after.

1 comment:

  1. I wish you peace in your wondeful memories

    ReplyDelete