My sister Eileen was nine years my senior. We were never close until she began her long crawl on bloodied knees towards death. Her prognosis from the time she was diagnosed at stage four was six months. It took almost three years for Inflammatory Breast Cancer to kill her. I held her hand throughout it, until she slapped mine away and ran toward death in a fit of anger. I knew her best and at her worst, and I hardly knew her at all. Eileen was dark Irish, seven inches shorter than I, funny and quick tempered. Despite her unpredictable fury, I was always drawn to her company because of her scathing but humorous sarcasm. As a family, the one thing we have in common is that we are willing to pay a steep price for wit.
I was closest to Eileen’s daughter and then her husband Paul. Erin came to stay with me as a child in the summertime. With Paul, I shared conversations about books and a cigarette now and again out on my parents’ porch. Literature was a topic Paul and I never exhausted.
Paul’s was kind, slow to anger, and he adored Eileen. I don’t use that term lightly. It was adoration, unmistakable even if he had not brought her coffee in bed every morning for over 28 years and put socks on her feet so that she, stepping lightly from her slumber would not suffer the agony of cold toes. I made fun of him for that “Oh!” I would say drily taking a draw before passing back his cigarette. “By all means protect her from “de agony of de feet!”
Paul loved being married to her, even when he was shaking his head sadly when I asked if he had bought that stereo he had an eye on saying, “Eileen won’t let me have one.” He was proud to have a woman who could deny him something even when he could deny her nothing.
Although Eileen was closer to another sister I was the one she told first when she discovered the inverted nipple.
In my family I am the keeper of unspeakable secrets. I am the one with whom they test the words aloud. I am not the one who is loved the most, sometimes I know their love for me is tinged with resentment, but I am the one who actively and passionately puts my love for them into action, protection, the one least likely to accept their fates as inevitable.
I don’t love my siblings because they are all kind, or easy, or even because they love me back. I love them because they are mine. My love is piercing, unrelenting and sometimes as unwelcome as a stage light. I don’t love everyone who crosses my path, but my love for them is not a choice.
When Paul died it was because he couldn’t face a life without his bride. I am certain of this. We had recently returned from NIH. Eileen and I had gone alone to Washington and secured a hotel room so that we could toss sleeplessly in some modicum of comfort and await the dawn. Finally we tore ourselves from the sheets at five a.m. for further tests for victims of IBC who were stage three.
We were exhausted, but there was a current of jubilance to it. We were smug with confidence. She could be cured. After all, we had made it this far, earned a second trip. They wouldn’t drag her in from South Carolina twice for nothing.
We understood that this visit was all about fine tuning the treatment. At about six p.m. we were ordered to report to the bowels of the hospital for a brain scan instead of the top floor where we had been told to expect our trial schedule. We shrugged and raced to the elevator. Time was everything. Being on time for each examination was another kind of test it seemed as we raced through the hospital maze.
Eileen used to love “The Amazing Race” on television. I despise reality TV and particularly any shows where contestants are eliminated. Years later, I am finally able to watch snippets of “Amazing Race” and I recognize the successful contenders’ expressions as I remember ours. The race? We were IN IT. It was grueling but we were winning. Even when we were lost we righted ourselves with astonishing alacrity and earned the right to advance to the next level. It wasn’t a race against time as much as a race for more time for Eileen.
We finished the bran scan and made our way from hell toward heaven. That is figurative of course, but the unexpected delay was underground and salvation awaited us on the top floor.
We were directed into an office. Instead of one physician it was crowded with four. They were good looking and pleasant children in lab coats. They showed no signs of distress as they delivered the news and we were polite as we were pronounced stage four. Eileen was the patient, but by that time I was so involved in her care I didn’t know any longer where she left off and I began.
Our mother reared us well. We shook their hands, we thanked them, we may have even smiled and they looked gratified that we weren’t going to reenact any of the stages of grief with them. No denial, anger, or bargaining; we left the office calmly and made our way to the elevators.
As we drew closer I heard a terrible sound, a keening moan, an angry choking. I did not realize right away that it was us. Alone in the elevator alcove we slipped to the floor as we made the unearthly guttural sounds of women who never learned the art of weeping.
Eventually we recovered ourselves, stood up and without speaking pressed the button for an elevator to come and carry us away.
We were supposed to check out in the morning with a treatment schedule, but with this reversal of fortune I knew Eileen didn’t want any part of that hotel room, not for another second. She stayed in the car as I packed our suitcases in a fury. I drove all night to deliver her back to Paul.
Within weeks my sister heard Paul in the kitchen chiding their little dog then the sound of a mug shattering and a thud. Paul was on life support for three days before she let him go. We sat in the waiting room, all of her sisters and brothers and Mom. We heard her from that waiting room as the machines were unplugged and he slipped away. The sound she made was beyond any grieving cry. It was the desolate howl of the wolf that lost its mate, the sound was chilling and supernatural and larger than anything a woman so small should be able to make.
Once Paul was buried I became nearly everything to Eileen. I was her mother, her sister, her nutritionist and friend. Her world had always been so small. She had one other friend, a daughter and her other siblings. Our mother, more firmly in the grasp of Alzheimer’s every day, was no longer a comfort. Eileen told me one morning she had thought about what to have for dinner. She asked herself “What would Mother want me to eat?” But the image that flashed in her mind was of me. It made me sad; I already felt I had become my mother’s keeper, now I was her usurper as well.
I bought Eileen’s groceries, made her eat tomatoes and drink aloe juice. She would never drink the aloe unless I took a swig of it first. “Tastes like horse piss,” she would remark mischievously as I swallowed it.
My mother was sometimes aware that I had been away with Eileen. Mom asked why I tried so hard. “If you were ill,” she said, “you’d get a card.” The brutal truth of that was eviscerating. Even now as I type it my breath catches. Alzheimer’s disease is a thief, but not often a liar. Not often enough.
But the other hard truth is that I wouldn’t want anyone to do for me what I would do for them. I am introspective enough to question my own motives, wonder if it is a martyr complex, or ego, or that I need to be in charge.
Maybe all of that is true. But what it all comes down to in the end is I am the willing one. I’m not the only willing one sometimes, but I am my father’s daughter. When he died I became this woman who could not be a spectator anymore. It was a compact made in silence as I helped Mother with him in his last days. "I will take care of Mother," I told him, ushering him toward the light. Still he did not go. His eyes were insistent as I tried to figure out what would make him allow this unspeakable suffering to end. As I was wetting his lips on his last day I amended my reassurance: "Mom will never go into a nursing home. I will take care of all of them."
And so I take over, almost jealously guarding the crises. My foolish heart is a wellspring of cockeyed optimism hued with unfounded ego. I believe my fervor can make the difference. I attempt to prove a doctor wrong before he even drafts his sentence, wrest his pen away and rewrite it.
And so I take over, almost jealously guarding the crises. My foolish heart is a wellspring of cockeyed optimism hued with unfounded ego. I believe my fervor can make the difference. I attempt to prove a doctor wrong before he even drafts his sentence, wrest his pen away and rewrite it.
That did happen once, Eileen's doctor told us a year before her death that she had mere weeks left. He showed us on the computer screen where the cancer had infiltrated her lungs. "Lit up like a Christmas tree" he pronounced. It was a jarring analogy considering what it meant. I wouldn't accept it and I argued with him. Eileen was not dying that fast, she could still walk her dog.
I drove her to Duke with the file where Dr. Gretchen Kitchens took a look and said "That's pneumonia, get her back on chemo immediately or she WILL be dead in a month." We would have been none the wiser if we hadn't visited Duke. I will always be grateful to them for seeing her so quickly, for revising her fate.
Eileen died angry with me after discovering I had begged for a visit from someone for her. She was deeply wounded and humiliated. She called me, she cursed me, she screamed that she was a burden and we were tired of caring for her. She wouldn’t allow me to be with her for days. When another sister found her she had been crawling on the floor to get food, medicine, to throw up. Her skin was as dry and brittle as leaves in late Fall. Her hands bled.
The family swarmed in, they were heroic, but I was still a pariah. She did not want me. A kind sister-in-law told me later, "She was mad because you let her down. You come in when there's trouble like a savior. I've always thought she really believed you could save her."
At the end, still furious with me, she did permit me to take her to her last doctor’s appointment. After all, I had her file. I still have her file. She tired easily by then but could walk. She would not let me take her arm. She had only agreed to my request to accompany her to the appointment through an intermediary, a brother.
It was late June. The doctor suggested Hospice in front of Eileen, despite the agreement we had made long ago and at her request never to tell her the ugly truth. It had become obvious he was tired of that game, “You don’t have much time left,” he told her, "I want Hospice to start now.”
Eileen looked away as I began to bargain with him. There was rumor of FDA approval for a prostate cancer drug that seemed promising in IBC trials; could we keep her alive until they released it in January?
It was a desperate and irrational question he answered with an annoyed look. The chemo was making her heart-stoppingly weak, there were no treatments left. Once again he gave her less than a month. My brother was out in the hall. I stepped out and advised him of the doctor’s pronouncement.
The agreement to allow me to go to that appointment was no truce; it was simply a very brief détente. Eileen allowed me to stay as the family organized themselves around the hive that a home becomes when hospice arrives. As soon as she got in the hospital bed she began dying at an accelerated pace. My brother Greg and I stared at one another in horror as she chased death. “What the Hell?” he asked and wordlessly I shook my head.
Eileen did not allow me back for most of the days she had left. She was stubbornly convinced that the call I had made meant I wanted her off my hands, that I was tired of her.
She did not so much die as storm out of life. I suspect she died hating me. I will never recover from that.
But before that there was so much richness, laughter and strange commonalities. One of those was our discomfort with our tears. I do not cry when I am sad, she only cried when she was angry. We both found humor in the dark. We alone out of the sisters took a perverse pleasure out of creating awkward moments for those unlucky enough to reveal their prudishness. I am no prude but she delighted in going further and further with inappropriate remarks until she found my own Achilles heel. When she bemoaned her lack of a sex life to her doctors I was mortified enough for her to make it part of every visit.
Once she asked me quite seriously if I could contact the “Make a Wish Foundation” for her. She would like to have sex once more and wanted me to see if they could arrange it. I explained that the foundation was for children but I would gladly make any request for her if only to liven up the “Make a Wish” staff’s day. We cackled, we rolled, we crossed our legs to keep from wetting ourselves. We considered the image of some kindly middle-aged woman accustomed to opening teenaged requests for celebrity visits only to find Eileen’s plea for a one-night stand.
The things we talked about were interesting only in the fact that they were infused with humor and they never were about any expected topics. I did not wonder if she believed in heaven, I know she felt Paul in the room when she heard a sound. “Do you think it was Paul?” She asked hopefully, “Yes,” I said nervously toeing her dog out the door. “Yes.”
We never discussed movies, although I wish I had taken her out to some. She had never learned to drive so I always already knew from daily phone calls what had transpired in my absence.
​Eileen didn’t read novels often and was a horrifying cook. She liked TV more than I did. There was a notebook where I wrote down everything her doctor said but we didn’t talk about it. We were sick to death of cancer. She didn't want to talk about the appointments; she only wanted to know when I would be there again.
I had told her at the beginning that no matter what she did to me, said to me, I would never leave her. She tested that sometimes. I always came back until the end.
I was not there at the end.
She died on the 4th of July.