That was the easy part. The hard part was watching my beloved Muv die.
The day I arrived from Paris I raced to the hospital, just as I had 5 years ago when this all began. Then, unlike now, I had helped nurse her back to health after 3 weeks in intensive care. They’d given her the wrong drug to address her white blood cell count and practically bled her to death. I had changed her bed pan, massaged her bruised feet and legs, held her hand, loved her as best I could but this trip, this time, I knew it was going to be very different. The end was near and I felt it completely.
When we lived in Rome I'd flown my parents to Rome for two months and was surprised by how much they’d changed in the last 6 months. Every visit to Seattle within the last 7 years provided far too vivid snapshots into how quickly their bodies had changed. My father’s Parkinson’s is compounded by the mystery of a fragile mind, one that manifests by way of an evolving physical and mental state. I can only address by taking him to see his Dr., as I did, and by watching, waiting and respecting his desire to take care of himself. My cousins agreed, and both stated emphatically, ‘keep him in that condo for as long as possible, even longer than ‘appropriate’. I’ve talked to him several times since I left and my husband will see him soon. Somehow, our talks have awakened his sense and need to fend for himself. He is having far too grand a time with Muv gone, but this is for his survival and I am relieved and grateful.
For the past several months, per always, I called Muv everyday or every other day from Paris or Malta or London. I knew exactly the day her voice changed from chronically enthusiastic and positive, upbeat, to someone who had become tired of this chemo exercise, this life lived less than. If she couldn’t paint, what was the point? I could tell from the topic of conversation we shared how well she felt. I could tell from the amount of time we spent on the phone, to the conversations she had with my father while I listened on the phone, she’d allow me to hear them address their lives. She started responding less to my emails. She started to fade in her own way. She held such energy and then suddenly she was growing fatigued.
Several weeks before she died she told me that is was becoming too painful to walk. I wanted to come. She said ‘No, not yet. I will tell you when to come.’
I waited. Then I told my father to take her to the hospital. He did and called me the next day. I had to locate the Dr. by phone from Paris. He said, “Your mother has a blood cell count of 200,000, she’s reached acute leukemia, you better get here fast.”
I started to make travel arrangements.
He had told me to call him back in 4 hours. I called him back in two, only to be informed that they were taking her from one hospital, Swedish, where she’d ended up because all the beds were full in the other hospital. They said she didn’t have insurance so they would have to move a critically ill patient, one that I had just assured would not have to be moved, to Virginia Mason. She had insurance, what in hell were they talking about. I cannot go into the particulars of the next 24 hours and the 5 doctors I spoke with, some asking me for Muv’s medical history, which simply made me feel paralyzed with fear, so far away.
I was living in a Michael Moore documentary.
Monday night I arrived in Seattle. I raced to the hospital and knew that this time was different from the last, 5 years ago.
When I came to her side she said, “Now darling, don’t tell the Dr’s what to do, let them tell us.” And hour later, after the perceset wore off she was in deep pain and started suggesting that she simply couldn’t take it anymore. When this started 5 years ago, we signed a document stating she would not be kept alive if her heart stopped. She told me that if this ever happened again to please not allow them to poke and prod and do that which they had to do to keep her alive.
I knew it was simply a matter of time. She was in so much pain. I had to beg the nurse to give her a hit of morphine on the second night. To suggest that my mother is strong and incapable of complaining is simply fact and something that may have worked against her at this time.
The next morning the oncologist was kind enough to stop by for 5 minutes. He told us that they would have to monitor the pain and see how things played out later in the week.
This was complete nonsense and contrary to the diagnosis of the Dr. from Swedish. I called my close friend, a top oncologist in San Fran and Seattle and we met for drinks at our old watering hole downtown. I needed a drink or 3. We talked about his new baby and my mother’s imminent death. Such are the cycles of life. He looked at the stats and agreed. “Bay, she’s got between 2 and 10 days.”
Everyday I woke at 4 and went into 5th gear. The next day I arrived to a woman that was not only exhausted from pain and lack of sleep as the acute leukemia had spread to her bone marrow but something else was very wrong, as if a light had gone off in her face, her eyes, her way. Muv had had enough. I demanded that the on-call Dr. speak to me. We had a candid, comprehensive conversation over the phone and then she raced up the stairs. We sat on either side of Muv and asked her whether or not she was ready for comfort care, if she was ready for the end of her life. We three spoke for a long time. I said to the Dr. “I love you very very much, Dr., thank you for listening to us.” She looked at Muv and raised her thumbs up with a broad smile. After she left, right after she left Muv asked, not able to smile, “Is she, gay?” “Yes”, I said, “and she’s our angel, Muv.”
The oncologist arrived soon thereafter and assured Muv that he and two to other assclown Dr’s, one who had been Muv’s doctor previously, one that Muv didn’t like at all, had agreed this was the right thing to do. In a society that does not accept death, these paid professionals will keep the body alive in spite of everything that points to the contrary. I understand why, but I still can’t accept the fact that this Dr. didn’t understand Muv’s medical history, analyzed her complicated medical presentation differently than previous colleagues. I was Muv’s advocate. I hope that every person can have their own advocate within our health care system, a system that is positively broken, incapable of a process that allows vital information to flow naturally and effectively. Instead, with each Dr. and nurse on call, they start over. It sucks.
For my entire life, conversing with Muv was effortless, fun, insightful, hilarious, warm, and entirely perfect. Even when we argued it was fun and didn’t last long at all. And we did argue. But we could agree to disagree about everything. We knew everything about the other, absolutely every delightful detail and secret. And there are secrets. And they are delightful.
From this point forward, towards the end, few words would occur. I asked Muv if we could call Dad. After a brief time she said yes. I held the receiver to her ear as they thanked one another for such a wonderful life and expressed their love for one another. I hung up the phone and paced about the room every so often and just watched her process death, her life, an amazing life that had witnessed a person create a reality so adroit and healthy I could see that she couldn’t quite believe she had to leave something she worked so hard to make so right.
I saw the fear, just a bit, the anger, so subtle, and the resignation and then acceptance. She would look at me and gently raise her arm over her head onto the pillow or ask me to move her, shift her position, just a bit, please, for the pain was such.
I’d packed randomly, throwing in a bunch of crinkly Issay Miyake to my suitcase. This made her smile, my being swathed in my avante guarde designer wear. She’d tug at the fabric every so often and look directly into my eyes as I leaned over her and say “you are so beautiful”…
Everyone at the hospital loved her. She didn’t complain, moan, ask for much, but what bothered me was that she would not press the pain button. I would gently lean over and suggest that I push it. She would give me a long, direct look and softly nod her head. When I spoke with Marie the next day, in deep confusion about this part, she told me how her mother wouldn’t accept the pain pills; she’d just put them under her tongue and spit them out the moment the administrator left.
Muv did every thing I suggested but I was not here to end her life, or was I? I was here to be with her to the very end. That much will never be in question.
Muv was going to experience every last moment of her life. As she should. For it was certainly the most exquisite life I would ever know.
Muv understood protocol, perfect manners, grace but just underneath, under all that Chaucerian irony, lived the bohemian, the artist, the fighter for the underdog, the contrarian. She loved when I became attached to Chaucer back at university. She loved the way I suggested this was the story of our lives, how I questioned everything, that I’d married a man that did the same and gave me confidence to question conventional wisdom. When I introduced Muv to my future husband I wasn’t sure how she’d respond for he was so different from the rest. The next day, she said, “I understand completely.”
The awkward geek was calmed by her affections; the bright girl admired for her intellect. When she was ‘wedding planner’ for the church she made sure the shotgun wedding was anything but, and when I needed someone to help my father, the young guy that cleaned the condo main rooms said he’d do it for free for the short term. Muv had been so supportive, loaning their car, expressing support, always, and now that he was so successful he said he loved her because she was so cool.
I recall walking along 4th avenue several years ago. Muv was looking for a subject to paint. She’d sit at various spots downtown and wield her magic. We couldn’t find anyone, then suddenly, our eyes landed on the saddest, most downtrodden female soul wandering aimlessly down any avenue downtown. “Oh, Bay, take a picture, hurry, I’m going to make her look so beautiful.”
Muv didn’t go negative. She didn’t talk about her sickness, even to her husband, even though he took great care of her in the last couple of years. She told me. She wanted me to know. I needed to know. I lived too far away, but we always talked, we talked things out, our lives, our conundrums, our everything.
Twenty years ago, after studying in London I was staying in Manhattan. A friend’s mother, a classic east coaster, one that had my friend in therapy by the time she was 13 years old, once said to me ”you know, you really should go home to your mother, Bayulee.” I was kinda wigged out by the comment. I promptly called Muv and said, “Should I come home?”
“No, you enjoy every minute, if it’s working for you stay, if you need me, come home.”
Muv didn’t know how to guilt trip. She’d spent far too much of her life sacrificing and spending the emotional energy that would make her life work, for her, completely. She sacrificed so much for her children. When the family drama began to unfold around my brother’s death, after hidden agendas became known, my eldest brother and I would look at one another and say, “we came from the same family, right?”.
My sorrow is so deep but my hopes are so high. Marie, her cousin, understood my mother through their privileged childhoods together in San Fran. I think they were both poetic in their lives, so bright, so positive, so emphatic about keeping above the fray. As we bawled like babies when I broke the news, she said, “You are going to assimilate your mother’s strength, it is going to be yours. You need to understand that fact, Bailey.”
Yes. But not now. I love Marie dearly for instructing me on the lessons I will need to learn, for I look forward to them, but now, I’m quite mired in the shock of losing my beloved Muv, the love of my life, the light of my life.
I told her I would dedicate my Europhile Travelogue Blog as well as my novel to her. She looked at me with a small smile as she looked away, trying to escape the pain, ”Finally, some good news, the kind I like to hear.”
For Muv, Betty and Marie, living life less than well was nothing more than an embarrassing alternative. And Muv’s life was about to end.
By the time we’d arrived at hospice too much time was spent listening to the warm and caring people tell me how warm and caring they were, for suddenly I realized that I needed to see Muv. She was not doing well as they hadn’t put her on the pain medication in a timely manner. I needn’t go into the last 7 hours for Muv had lived life with too much dignity to have to go through what she did. That strange body no longer resembled the gorgeous figure and skin and teeth that had made up my Muv. To write about how hard that body had to fight, just to die, would be too negate the beauty the vitality and life that was Muv.
When her last breathe released itself from her body I found the attendant to confirm that she had passed into deep sleep. For hours I felt her body shut down and grow cold, but still, that smooth, wrinkle free forehead was still warm. Such an experience is so humbling, so severe in its primal state, watching the most precious person in your life leave you, slowly and completely.
I must be the most fortunate soul. I may have lost her, but for a lifetime I had the most spectacular time with my mother. A couple of posts ago I quoted Oscar Wilde…something about the fact one adores their parents while young, begins to understand them and then must forgive them. My siblings couldn’t, and it shows.
I wished that my biological daughter could have known Muv. I’d given her up for adoption but even that small time in my life, when I’d fallen off the rails, manifested into producing a soul that made Muv so happy, so happy to know my DNA was moving forward.
I’d sent my daughter a letter a few years back, one that she appreciated dearly, including as much family history as possible in letter and pictures. And we all know how much I like to write. This lovely young soul, just starting out in her life, with a double degree from the University of Washington, having lived in a foreign country the same year as I, now residing in Manhattan at about the same age as I, dancing her way through life, creating, challenging herself, creating an artistic and unique reality.
But then, I suppose she didn’t need to meet Muv for unbeknownst to her, she’s living out her life proving that DNA does count. Muv was so proud and happy to hear of her adventures. This young, beautiful soul is completing biological circles in a most divine, blissfully oblivious way.
The cycles of life.
I kept returning to Muv’s room because I couldn’t possibly leave that body alone while it was still warm. I leaned down to kiss her forehead. I felt so confused, for the first time in my life, so frightened, for we were so alone, and I was rudderless, in need of just one person, Muv, the one that allowed me to be me, to fight for what I needed, to know why I was fighting for that need, to accomplish, yes, but to live and observe, to make a reality that allowed one to live well.
As I leaned over her, touching her face, hovering, in shock, the one thing that surprised me was that I really didn’t want to kiss my now deceased mother, because everything became so very wrong for a woman that lived so right. I didn’t want to kiss her good bye, but I did. For so many hours I’d wanted to simply devour her, her pain, to crawl up on that awful little bed, to lie next to her and hold her bruised body. Instead I just touched her face, her arms, her legs, her beautiful face, reading Edith Wharton, holding her hand, trying to stay sane, a practically impossible notion at this time. The young man told me that she could probably hear my voice, above her struggle.
When driving home in the early hours through the streets of downtown, my old hood, suddenly this city felt creepy and sinister, especially without Muv to welcome me back at their condo down on 1st avenue.
I walked into their condo and proceeded to open up a bottle of red wine, it was sometime after 2am. My father quietly walked through the door from their bedroom and waited. I just put one hand on the counter, another on my hip, head down, and said, 'she's gone dad...',,,.
I walked around the bar area and watched as he silently shuffled back into his room and lowered his slumped body back onto his bed, trying to retrace the steps, as if he could go back to those dreams of when his beloved was alive.
I sipped my wine at the bar, looking at Muv's blessed view, of the Puget Sound just outside their window and the sculptor park that lived just below. There's a bright red neon ampersand, in particular, our favorite piece of art, indicating love & loss. I then grabbed all of my mother's tissue boxes and placed one atop the other on the table next to the chair in which I sat, bawling for hours, grabbing a tissue and then throwing it on the floor, creating a garden of loss, of pure sadness. I wanted to see and feel the most primal sort of loss. Finally, I was spent. I wondered if I'd woken up the entire building, knowing I hadn't, not even my father, for when a grenade of grief goes off in one's head, you are alone, terribly, completely, all alone. I then put on Muv's dressing gown and fell into her other bed and fell asleep.
The next day was one of complete shock, sharing the news with our nearest and dearest. My Dad and I held one another up until I dragged the both of for a long walk to the market, just to get some air, to make some sense of the outside world. As if one existed.
I will know for the rest of my life what it is like to be completely adored, to adore completely, and understand the power of positive love, to be eternally grateful for the relationship that existed between me and my most beloved Muv. I will miss her every day in every way, and that’s just fine for the both of us.
I now have a small silver urn that contains some of Muv’s ashes; it lives just underneath a favorite oil painting by Muv. I have Muv. I will soon assimilate Muv.
Until then, I shall think of that soft skin and melodic voice, that powerful body, those soft knowing brown eyes, those gorgeous white teeth, hopeful, natural, funny, kind, loving, beautiful….did I say gorgeous soul…….
