sun-stopping

21 December

From the Latin sol, for sun, and sistere, to stand still, comes solstice – literally, “stopped sun.” It refers to the seeming pause the sun takes before changing direction in its declination, either to the north or south depending on the time of year. I look this up later for the specifics, but I’m thinking about it as I cross the Delaware Memorial Bridge, DC-bound, six months ago now on the longest day of the year. The sun has just set – I recall the time now as 8:44. Midspan I think of a truly stopped sun, stopped time, wish it were so, and I itch to write these words but know I won’t for several months at least, the longer the better. I don’t want my sister to read what I’m thinking right now – she of the interminable, non sequitur-laden stories peppered with “long story short” transitions that mean nothing of the sort. What I’m thinking about in the benign summer twilight is her stealthily advancing cancer. The outcome is not in doubt – she is going to die from it. Still, I wonder how, against all reasonable expectation – against nature itself – her too-short story might be made a little longer.

I will not write this while she is alive. It is difficult for her and me to discuss her prognosis at all. She talks of fighting and beating the disease, and if one asks about “Plan B,” about what she might want to do with her time before it runs out, one is met with a list of prosaic household chores and projects, or an emotional accusation of premature grave-digging. Somewhere around this time, the start of summer, about seven months from her initial diagnosis, it dawns on me that my sister will not have a Come to Jesus moment about her illness. She will not receive peace, she will not sing Kum Ba Ya and greet visitors with an air of sweet, halfway-to-heaven acceptance. In fact, in the days to come it will be worse than I can now imagine, as the metastasizing cancer stampedes into her brain, robbing her of personality and even sanity before finally taking her breath.

For now, though, with full-on summer upon us, it’s still possible to whistle past the graveyard. I’m coming down to spend time with her – my first visit since our family gathered outside DC for Easter in April. She has been tested and scanned again and the good news of spring has yielded to the troubling (and expected) progression of her disease.

My sister’s name, Ardith, marked her forever as utterly unique. The name came from my mother, who had a friend by that name as a child. We joked sometimes that she must have misheard the name back then, because it was so unusual. I have only seen it one other time. It is of Hebrew origin and means “blooming meadow.” Growing up she was “Ardie.” To my dad, she was “Duff” or “Duffer.”

By June of her final year, she has undergone chemo and radiation to treat tumors in her head, chest and a few other random spots. The radiation, aimed squarely at the brain mets, did its job, as apparently it always does. The chemo, for tumors elsewhere, largely did not. Now, here in June, new tumors have sprouted in her head. This is what will kill her – what typically kills cancer patients like her. She needs more radiation, and this, along with a new chemo regimen, is what will be planned and discussed with her doctors this week.

When someone is seriously sick and dealing with multiple doctors and complicated treatments, the underlying stress level makes it really impossible for the patient alone to absorb all the pertinent information that is presented, or formulate and ask all the relevant questions. I know this from my former wife, who tended to her mother during her cancer – the patient often just doesn’t pick up everything the doctors say. So I am here to hear, to ask and also to report. I have the tape recorder that Ardith sometimes forgets to bring or turn on when she meets with doctors. I want to give a faithful accounting to my family and even I won’t remember everything that is said. We meet with her radiation oncologist, setting up for Ardith’s next treatment. My sister never asks questions like “How long do I have?” or “What are my chances?” but I feel a crushing need to know this. When I get a private moment with the doctor in the hallway, he and I have a frank conversation about her status. He tells me at this stage predictions can be hugely imprecise. She could have only one month, or six. It depends on how quickly new brain tumors have appeared, how many there are and where. She could conceivably drop dead from a stroke tomorrow without warning.

Brain radiation can’t be done over and over. In fact, twice seems to be about the limit, and even then your brain could turn to oatmeal in the process. You might lose your sight, and then your mind. It is, however, 100 percent effective at killing tumors. The problem is that new, more aggressive tumors develop, sometimes very quickly. This is the case for Ardith – new growths have appeared in the two months since doctors last looked. She is crestfallen at this news – says she really thought she was beating it. Not for the first or last time am I brought close to tears by how naive she seems to be about her illness. Maybe she has the right attitude and I am the voice of doom, rushing her into the grave. “I need to be surrounded by positive people!” She’s said that a few times to me and I have difficulty responding. She can’t go there, but I can’t seem to leave.

Part of my fatalism stems from what I observe in her. Like so much of her life over nearly the last 20 years, she preaches a gospel that she does not seem to practice. Over the years she has pursued and sworn by homeopathic regimens and remedies for health and mental well-being, yet she continues to smoke until a year before her diagnosis – more than 35 years in all – and routinely deflects suggestions that she pursue psychotherapy or medication for the demons that seem to paralyze and consume her. During her illness, she speaks of miracle cancer survivors and their ascetic, life-prolonging regimens for diet, exercise, nutrition, but she does not really follow these. Her routine is largely unchanged. She takes supplements but goes to bed late, maintains her usual diet and tends not to keep to a schedule. She makes a cottage industry of organizing the life-choking clutter of her apartment but does not seem ever to reduce its size. I wonder if she takes comfort in her devotion to these quotidian rituals, hiding from the finiteness that lies ahead.

Summer, from the perspective of this writing, on the first day of winter, is a hot and hazy blur. After the June doctor visits I return to home in New York. Ardith comes up from Virginia in early July, to our childhood home where my parents still live in Westchester. The immediate family gathers, all of us, to celebrate my mom’s 80th birthday. Ardith has been wearing a pricey, natural-hair wig she chose for herself shortly after treatment started. It is nothing like her own hair. If anything it reminds me of how my other sisters wear theirs, or used to. She still had hair when she got the wig in January, but to fit it properly, and with her hair starting to fall out, the attendant suggested that she shave her head then. Ardith consented, crying as the hair came off. Later, she is surprised when her supervising oncologist says the hair will not grow back. What the doctor means, I’m pretty sure, is that she will not live to see it grow back, but I keep this to myself.

During her July stay in New York, my sister has an appointment with another oncologist at Sloan-Kettering in Manhattan to discuss a drug trial there. My dad and I go with her and we learn that while she is not a candidate for the trial (no brain metastasis – sorry), the drug used in the trial is available for off-label use via simple prescription. It she ends up taking it, though, it will be because the second-line chemo treatment she is currently taking has failed. Third-line treatments and trials are even less promising. But we’re not there yet. We don’t know yet that the chemo she’s on is having not even a placebo effect.

Soon after, she goes back to Alexandria to begin more radiation. Apart from her lost hair, she does not look or seem sick. I call her frequently, but in hindsight not enough. If you don’t have an hour or so free, it is hard to have a productive, informative conversation with her – pretty much as it has been for years. A simple “How are you?” is met with a long incongruous story, way off the subject and only sometimes about what she is actually doing; a second, more insistent inquiry returns a casual “I’m OK.” This remains her reply up until the time that she can no longer even manage this short sentence. The upcoming round of radiation will be targeted on specific areas of her brain but also will be unleashed on her neck and upper chest. It will last a couple weeks and for the first time she will experience discomfort from side effects – radiation burns on her back. Yet during and after treatment, she believes that she is doing better. Whenever she is under active treatment, she says, she actually feels the cancer shrinking, going away. It seems to me to be more magical thinking, like when she talks about her voice coming back. Late the previous fall, she went to the doctor complaining of a lingering illness and sore, raspy throat. As it turned out, one side of her vocal cords was paralyzed. The ensuing biopsy found cancer pressing on the vocal cord nerves. Her voice was a hoarse wheezy rasp last December but by February, after her initial round of treatment, it had largely come back. It’s easy to make the leap – voice comes back, cancer gone. But in fact it’s just moved on. It doesn’t make any sense to me that she “feels” what she thinks she feels. And yet who am I, the grim reaper pro tempore, to say otherwise.

I am back in Alexandria in August for a couple days to take her to another oncologist, this one at Johns Hopkins in Baltimore, to discuss another trial and treatment options. As before, I record the conversation and will post it online so other family members can listen. It was a long, informative conversation, 90 minutes, and I don’t remember much of it now. The doctor’s father died of Ardith’s type of lung cancer – small cell – and she has chosen to specialize in it. The three of us decry how lung cancer carries a stigma – that those afflicted with it from smoking have brought it on themselves. It is understandable but not really fair – why not blame tobacco companies, or recognize the fatal lure of nicotine as a disease in itself, like other addictions, and not blame the victim? I remark that I don’t recall pink ribbon awareness campaigns or walks to support lung cancer research.

Nor, given small cell’s lethality, do many cancer docs seem to want to venture there. Average life expectancy from diagnosis is measured in months, not years. How much can be achieved in such a time frame, so few successes? The doctor is patient, direct but compassionate. I ask leading questions to keep the conversation focused and moving. Ardith’s manner of questioning seems to require a lengthy preamble to explain what she is asking and why, almost as if one came to the New Testament Jesus story by way of all those Old Testament “begat” passages. We discuss another drug trial, another chemo drug, get confirmation that more radiation is not an option, given the risks. This last part to me is like a steel door closing. I don’t think the chemo is working. That will be confirmed later in August. None of her doctors, caring and competent as they are, seems to have thought it would.

On this visit, we take a trip out to the Civil War battlefield at Antietam and have a remarkable experience you can read about here. I return to New York and in mid-August Ardith comes up for more family birthdays, including hers. I come out to Westchester for these. Nothing really seems to be changing about her, but we all know she is likely to start going over a series of cliffs healthwise. I wonder when the first of these will appear.

At the end of August she returns to Alexandria for another meeting with her supervising oncologist at Georgetown and new scans. The news is mixed and mixed is not good. The second-line chemo drug hasn’t worked. The radiation did but we already know we can’t go there again. It is the two-minute warning and we are out of timeouts. Her doctor advises her to think about the options – not so much for treatment but for quality of life. There will be no treatment at all for several weeks while we ponder this, or maybe we are avoiding it. The first cliff is around the bend.

My birthday is in mid-September. I’ve been out of work for just over a year and spending much of the late summer on eastern Long Island, where for years I’ve rented a house not far from the beach. Ardith has wanted for some time to come out, see the ocean, maybe swim in it. She talks of doing these things “one last time” and we finalize plans to celebrate my birthday out there with my parents. A friend drives her out midday; my parents are arriving later. I come out to greet them as they pull up to the house and when she gets out of the car her left arm is hanging limp. The left side of her face is drooping slightly. I ask about her arm, and she seems unaware that it is dangling from her shoulder like a dead chicken hanging in a butcher shop. Her speech is a little slurred and her gait uncertain, and I ask her friend, and later my parents, how long she has been like this.

Later, after dinner out, I drive my parents to where they are staying and tell them I think she needs to go to a hospital right away. Initially they push this off and I wonder if it’s denial, for I’m worried enough to call an ambulance. I come home and call my siblings and we decide on a conference call in the morning. We support a plan for early return to Westchester by way of Stamford Hospital. As we conduct triage the next day, one of my sisters posits alternate, less serious diagnoses for her condition. I read this as deep denial, but at the same time Ardith’s accusations rear up in my mind. Am I indeed shoveling dirt on her prematurely? Why? I get her radiation onc on the phone, describe her symptoms and ask him for an updated time frame. His answer is one to three weeks. This proves overly pessimistic, but only because it is based on my observations, not an exam. We don’t yet know what’s causing this.

My older sister has spoken to one of the top doctors at Stamford, a personal friend, and on the conference call we finally all agree to get her there quickly. She will be met by a proverbial team of experts. Before she and my parents depart, though, we drive up to Montauk, and on the beach there my sister teeters down the sloping sand to the water’s edge. The surf is pretty big, rough and bumpy, and she is so wobbly that if she goes in she will be immediately swept away. I sidle up to her as a wave sloshes in, bringing water up to her knees. I’m nervous but joke with her, asking if she had decided to take matters into her own hands with a plunge into the stormy surf. She chuckles, low and mischievously – this is the way she laughs now and it is at once both endearing and heart-rending. Her faculties are diminishing; at dinner last night, I had to help her eat and wipe food and sauce from her chin and cheeks. This is where she is going, soon to be a full-grown infant, dependent on others for everything. The worst is yet to come.

My parents leave with her. I follow later. She is admitted at Stamford and we learn, after tests, that advancing tumors in her brain, along with the side effects of her radiation treatment, are causing brain swelling and the partial paralysis. Ironically, thanks to the last round of radiation there is no cancer anywhere in her lungs or chest. She is put on a steroid to reduce the brain swelling and in a few days regains most of her mobility. We take her home.

Right after this hospital stay, more than ever before I want to hide from her illness. I don’t call as often to check on or talk to her. My parents don’t have this luxury. Despite their age, it seems they have more stamina than I to care for her. How excruciating this must be, to care for a dying child. How incomprehensible, to be there at both the beginning and end of her life. They do the best they can with almost no help for the next month or so, until we all go over the next cliff with her, landing down a rabbit hole.

In mid-October I come out to stay with her a few days while my parents go out of town for a function at their college alma mater. By this time Ardith is exhibiting odd behaviors, hyperactivity, mania. She blames this on the steroid and perhaps it is contributing, but it is all textbook behavior for someone in her condition – the effects of the disease, the nearness of death. She would awake in the middle of the night and want breakfast, she would rock gently at the kitchen table, drumming her fingers or patting her hands on the tabletop, she would wobble around the house asking for help with her various self-created and essentially purposeless (except to her) tasks. She drove my mother nuts with her incessant activity, waking at odd hours, opening and emptying chests of clothes, rearranging drawers, insisting on playing over and over some selection of the contemporary evangelical Christian music that for years has been practically the only music she listens to. I don’t know where this began with her. As a teen-ager, she vamped and lip-synced to “Lady Marmalade” at school dances, loved Latin, disco and other dance music, not to mention all the pop hits that I remember blaring from an AM radio on Saturdays amid the household chores. Standing in for Cousin Brucie and 77 WABC now is a discomfiting, formulaic rock anthem to the power of Jesus to save, a little too loud and way too often.

What’s wrong with this picture? What happened to her in her later years, from her mid-30s? It is a mystery that now, a few weeks after her death, is beginning to haunt me a little, though if she were still alive and able to answer direct questions, I could get no closer to the answers than I can now, conjuring up memories of her for interrogation. Ardith’s reality was not yours and mine. Just how far she could wander into the woods was about to reveal itself in dramatic fashion.

I won’t be sentimental about this: Ardith was a complete pain in the ass the days I spent with her. I was alone with her so every question, every request, every utterance – usually shouted over the music playing in headphones she did not remove – came to me. She was like a big clumsy child, wandering the house always in search of something – safety scissors and construction paper, maybe? But at this stage she could still be left alone, and so occasionally I did, going out on errands, for coffee or a run. But getting away didn’t alleviate all the tension and we got into a loud argument our last night together. Ardith still fully expected that she would soon return to Alexandria and wanted very much to do so. Who, after all, wants to live with your parents after decades of living on your own? She raised this again with me, wanting me to drive her, and I told her with exasperation – since this was the umpteenth time we had discussed this – that it was just not going to happen. She could not live on her own, could not reasonably expect that her friends and neighbors could or would attend to her ever-growing needs. Our back-and-forth came at considerable volume but it died down quickly, like when we were kids. Later, though, I wondered if the angry exchange helped precipitate the break she was about to have.

My parents returned Saturday. I had dinner with them and got ready to leave, a little relieved. We commiserated and blew off a little steam at her expense – I referred to a chaotic errand trip I took her on, and to the not-to-be-realized trip to DC, as “Driving Miss Crazy.” I suggest again to them, as we kids had been urging, that they needed to get someone in to help with her care. Yes, they said, but will she accept that? Ardith’s hackles rose at any mention of palliative care or hospice – she was fighting to the end and anything less was complete surrender. Would she cooperate with an outside caregiver, my parents wondered. My overly direct response was who cares? She’s not in a position any longer to make decisions regarding her care. Jesus, she still thought she could drive back to Alexandria and live on her own.

We were able to talk this way at that moment because Ardith had left the dinner table and now seemed to be wandering around the house, up and down the stairs, muttering to herself. I vaguely remember hearing her talk of betrayal, a large sum of money, missing items. It seemed weird but at this point what wasn’t? I went back into the city. When I woke the next morning and checked email, there was a message from her from the night before – cc’ed, I realized in mounting unease, to several dozen members of her women’s service group in Washington. Her eyesight was going and perhaps her finger coordination as well, but this is the message, as typed:

“Why did yosu disabllr =y phonr and take my red leather bag? It’s not right. God sees what you are doing”

Then, two hours later, with the same group cc’ed and with the subject “HELP”:

“WELL,BILL, QKQ JUDAS JUS TTOOK MY CHARGERS AWAY, WHy/ SO YOU COULD GET THE 800k i tole you qbvoT / rA

This was early on a Sunday morning. As the day played out, we would see what had for years been her mild underlying psychosis notched up to volume 11, and it was both terrifying and tragi-comic. I still didn’t have the whole picture, though, and called my parents, thinking only to suggest that we needed to disable her email and get this sorted out. My dad answered but seemed preoccupied and evasive as I spoke, rushing me off the phone to deal with something there. It was not like him. I called one of my siblings, or sent an email – I don’t remember exactly. I reported that Ardith appeared to have had a cognitive break, that something was going on at the house but I didn’t know what. I called there again and got more of the story – enough to decide to head back out.

Early that morning, Ardith had packed her belongings and called a taxi. She was fleeing what she described as incarceration at my parents’. The conspirators, her tormentors, were my parents and me. I had stolen her phone charger, she alleged, seeking to block her ability to contact the outside world for help. My parents, her jailers, were holding her against her will and preventing her from returning home in Alexandria. I was a betrayer, a Judas Iscariot, selling her out to my parents, the Pharisees. She needed protection. This is essentially the story she clung to all day. My parents, thinking that they should let it play out, allowed the confused cab driver to take her wherever she wanted to go, telling him to return for payment, for she had no money. She ended up at the local police station and told the cops her story. The police called my parents asking what to do with her. She refused to come home and so we enlisted a neighbor and longtime family friend who went and picked her up and took her to her house. This is where she would remain the entire afternoon, semi-barricaded, refusing our entreaties to let us take her to the hospital.

Around the early 1990s, my sister’s life essentially imploded. The real details of this collapse are open to debate and interpretation – her account could hardly be objective, maybe not even reality-based. She had blown the whistle on friends she worked for, tipping off authorities to business dealings they were having with a leading figure in an international banking scandal happening at the time. The whole thing blew up in her face when an assistant district attorney faxed back to her office the note she had sent, asking “Ardith, what’s this?” (All the bad guys got what was coming to them.)

That whistleblower status actually led to her next job, at a prestigious investment bank. A story about the banking scam in the Wall Street Journal had identified her by her initials and married name, and the president of the bank personally tracked her down. There, however, she became embroiled in a personal situation at work on a trading floor that ultimately led to her forced departure and the start of her wanderings in the wilderness. She ended her marriage – perhaps as was inevitable, but not the way she should have. She was depressed but rejected therapy and medication. Instead, she found what a solution to her troubles without the meddlesome need to look at her own actions in her undoing. She began taking homeopathic medications and supplements and she developed a fundamentalist Christian faith. Both of these exposed to her ridicule within the family for her perceived hypocrisy. She talked of how her self-prescribed regimen “saved my brain.” She talked of the sexual harassment she experienced on the trading floor – this was certainly true – and the book she would write exposing it. When she talked about matters of faith, she occasionally sounded downright racist, though this softened over time. In all of it, though, she was a victim. She could never work through that or get beyond it. She never held a real job again. Her resume included two-page opening statement that read like a paranoid’s manifesto. No one reading it would likely ever interview her, much less hire her. To me she was unreachable and by the mid 1990s I barely spoke to her. A few times over the years I tried, thinking that she might benefit from 12-step programs, encouraging her at least to try therapy. Others in my family tried harder. Whenever she seemed to accede, she would not follow through, her reasoning against it often circular. I resented her for not having the courage to look at her mess, but only because it had exploded so close to me.

Over the years her mania would rise and fall like tides. She would have outbursts of paranoia, but you could talk to her for hours, or even days or weeks, and she would seem perfectly rational, if a little too chatty. I realized during her illness that her friends had a distinctly different experience of her compared to us, and it made me feel guilty. So did all the comments about what a good brother I was being. I’d all but ignored her for most of the preceding decade. I just couldn’t deal with her craziness. She was a hoarder. She was obsessive-compulsive. But most of all she would not, could not get help, and we could not force it upon her.

I realized that Sunday afternoon, as I walked to the house where she was essentially barricaded, wearing a full winter coat and hat on this warm Indian summer day, that the cancer’s effect on her brain had been to unleash and magnify her worst paranoid fears. This was confirmed when we spoke to psychiatrists and doctors at Stamford Hospital, whom my other sister had consulted that day as we tried to figure out how to get Ardith back there for treatment. Legally, we now had the ability to force this upon her, since she had passed the threshold of becoming a threat to herself or others, but we spent the afternoon trying to cajole her into going willingly. We could not do so directly, because we were still her perceived persecutors. “No! No! No! Go away. Don’t come near me, you Judas. I’ll scream if you do!” she said to me when I walked in the front door of house where she was staying, forcing me to hide from her on the back porch. So we went through intermediaries. One was a well-intentioned by deeply out-of-touch Catholic priest who was a close friend of our neighbor’s. The other, a progressive, with-it Presbyterian minister and family friend, the daughter of the pastor at our church when I was growing up. Her father and mine had been best friends. We had been briefed by the Stamford psychs on what we could have them say to Ardith to gain her trust and I relayed this first to the priest, who was already there when I arrived. My heart sank when, with a pained look, he told me he was just there to minister to her spiritual needs, then railed against dehumanizing psychiatric institutions, as if we planned for her a straitjacket fitting and a horse-sized dose of Thorazine. I will refrain from describing what I thought of him at that moment. Our pastor friend arrived, though, immediately got the plan, and tried to get through to Ardith. I invited the priest to leave but he would not, and in fact interfered in what we were trying to do.

These efforts ultimately failed and we went to Plan B, or really, Plan C, which we had worked out with the local police. On our signal, they responded to the house quietly along with paramedics. I stood out of sight out front so Ardith wouldn’t see me. When she saw the police enter, she immediately became compliant. She went into the ambulance without argument, heading first to the closest hospital before transfer to Stamford. Because of what happened and what she had been telling people all day, she landed first in the psych ward there, and social workers spoke to us to investigate the veracity of her story. They had to, but it was a little humiliating, requiring the airing of a lot of family business to correct her fantastic conspiracy. Thankfully, it did not take too much to convince them.

Medically speaking, what tests showed was more tumor activity in her brain, and more swelling. She had been tapered down on her steroid dose in the preceding weeks and this was immediately reversed, I think even increased. In a couple days her mania completely subsided, but she was considerably weaker. I remember all of us being immensely relieved that we had her back. After a final meeting with a half dozen hospital staff, including doctors and social workers, we brought her home. My dad was away – while this was going on his sister’s husband had died suddenly. My mom was worried that she could not handle Ardith on her own and finally we began to look for someone to assist in her care. One of my sisters and I called around from a list of people the local Cancer Support Team had provided. We found someone quickly and she came in a day or so. Ardith took an instant liking to her and the latest crisis seemed over. For the moment we stopped falling.

The last five weeks of her life were relatively quiet – more cliffs, but less dramatic drops. She was on an expensive and ultimately ineffective third-line chemo drug and was about to begin a third course of it when she took her final turn the last week of November. A month before, though, she was still getting around OK. With her new nurse, she managed to walk almost all the way to Long Island Sound and back – about 1.5 miles – before the nurse summoned my mom to pick them up three blocks from home. The aide began to stay longer each day, then overnight. Ardith’s use of the stairs to get to her old bedroom was curtailed for fear of a fall, and a hospital bed brought in and set up in the family room. When the bed arrived, she pretty much took to it completely, sleeping more and more each day. She began to need oxygen, sometimes sucking on the tube instead of breathing from it. Her appetite kept up, indeed was ravenous thanks to the steroid, and she gained weight. She saw visitors and could talk in short sentences with them. About three weeks before her death I came to visit with a woman I had really fallen for. I wanted them to meet and they hit it off. Ardith was very, very funny that night, smiling like a mischievous child when offered more dessert, wise-cracking, laughing in her cancer-chortle. But she would also cry, and at this stage of her illness it sounded like an otherworldly, half-human wail. I heard it first over the phone one night when I was speaking to my dad. I asked him what was going on with her just then. He paused before saying, “We don’t know.” When I came out the following weekend, I read to her greetings people had sent to me to pass along, or had posted on her Facebook page or on the blog I’d been keeping for her. I heard her wail then and realized what it was, gulping back my own tears and steadying my cracking voice as I read messages from friends. As we left that night, the weekend before Thanksgiving, I lay next to her in her hospital bed and hugged her. She was communicating then mostly by nodding or hand squeezes. I asked her what she thought of my girlfriend and she patted her thigh rapidly in a one-hand clap. It was a deeply poignant moment for me. I was head over heels with this woman, and with that joy was the pain of watching my sister fade away.

I don’t remember the last thing she said to me – it was likely something trivial. The last couple times I called and spoke to her, she would say, “You’re coming out later, right?” and regardless of the timing or my plans I said yes. I didn’t actually come out again for a few days, on Thanksgiving. We would have a final, emotional holiday with her, all of us in the immediate family. But early that day, for the first time, she began taking morphine for pain, in addition to anti-anxiety meds. Her dinner that night, delicious deep-fried turkey with all the fixings, was the last solid food she would manage. Afterward, it was only Jell-O and purees. By Saturday, she could take only water, eventually given to her with a sponge so she would not choke on the liquid. She was actively dying, as it’s known. The death rattle of congestion in her lungs was there, causing no pain except to those of us who heard it. She was unconscious and unresponsive but we spoke to her directly, as if she were just there, sitting with us. Hearing, they say, is the last sense to go. The last things she said, according to our aide, came on Friday night. “Please God please let the pain go away. Let it stop,” she pleaded. Then, on Saturday, a call out for my younger sister. But no conversation ensued. She did not speak again.

Ardith died three weeks ago, on Tuesday, Nov. 30. I knew when she could no longer take water that the end was very near. The body knows when it’s dying and follows a well-documented progression of shutting down. Breathing slows, becomes erratic, but predictably so. It’s called Cheyne-Stokes respirations. The hospice nurse who so endeared herself to my sister, and to us, had prepared my parents for all of this, earlier taking them through the stages they would see as the end drew near. Beyond the selfless care she gave my sister, I am deeply grateful to that woman, Liz, for being there to help my parents. When Ardith’s breathing stopped for good a little before 5 a.m. that Tuesday morning, Liz was there, rising quickly to summon the family. My brother, who had come the day before, got downstairs first, calling me within minutes. I had been at the house Monday but returned to the city that night. Now, in the early morning, I drove out but took my time, stopping to take a picture of the sunrise over Long Island Sound before going to the house. When I got there, I looked at a dead body where my sister once lived, for it no longer was her, or even much looked like her. Maybe it’s morbid, but I took her picture. I looked at it often in the days that followed, trying to convince myself that she was actually gone.

I have written most of this on the winter solstice. Somehow, months ago, I was sure this was the day I would write it, though I did not know until earlier today how I would end it. Back on the longest day of the year, I wondered if she would make it to now, to the holidays. I didn’t think she would. A favorite saying in the circles I run in is: You can be right or you can be happy. Never did I less want to be right than now. There are waves of grief and tears, often coming when I see or hear how others, my parents and siblings, are faring. The night after she died, my dad awoke at 1 a.m. and for the next three hours replayed her entire life in his mind before getting up well before dawn. We each go through moments like this. Nothing seems too insignificant, too trivial to trigger a memory.

But with the grieving and feeling of loss comes growing, welcome relief. She is no longer in pain, yes, but what’s more, this incredibly sad experience that hung over us for nearly a year is at an end. I harbor no guilt for feeling this way and let the relief and everything else – anger, grief, fear, horror, melancholy, mania – pass through me without judgment, often jumbled together. I have a lot of trouble with anger and I probably need to get help for it. As days pass, I come to feel even greater relief realizing that the decades-old hijacking of our collective family experience that Ardith’s chaotic life represented, the background chatter that drowned out our family dialog for years, is also now gone away, and I become a little horrified at myself. This change is not worth her life. Yes, no longer will my parents have sleepless nights pondering drastic intervention to shock her into getting help. No more will the rest of us wonder how we will care for her when my parents are gone, for she is without question unable to support herself. Relieved of these concerns, our familial arc will assume a calmer, straighter trajectory, a path remarkably free of tragedy, calamity or sadness until now. But when family life is so buttoned-up and tidy, it’s not the way we really live. It’s not us. Without her we are out of balance, not the same.

We spend time, a few weekends, clearing out her apartment. It is the home of a hoarder – among her excesses, 32 bars of soap, not counting shoeboxes of those smaller bars you get from hotels. My siblings make jokes that I find uncomfortable, but I’m no different from them. I could not speak to my sister for years, so loathsome to me was her style of living, her deeply vested victimhood, her disconnect from reality and personal responsibility. But my visceral disgust was only the fear that it might land on me. But for the grace of God….

Finding things in her apartment, amid her clutter, in her writings and musings, things that others were likely never intended to see – there is no privacy in death. I attend still to her email and a few online accounts I have not yet closed. On a job site she has written, “Career interrupted – stay tuned.” On a news site, she lists her occupation as writer/editor but does not list income. She had none for years. She was unemployable, and the book she always vowed to write never even made it to a real outline, much less Chapter One. Had she been born later, her issues might have been spotted early and addressed with medication, therapy or both. Hers was a life hugely, sadly unfulfilled, her inherent goodness and decency underrepresented in her official CV but woven through the strands of her DNA.

My dad now calls Ardith a poet in a world of prose. During the time I spent with her this last year of her life, I was struck often by the childlike faith I saw in her, along with a gossamer fragility I had forgotten existed. She spoke to her doctors like a grammar school girl with her teacher. She had a meltdown in Staples when she couldn’t find the exact right binders to organize her treatment papers. She would interrupt our conversations with sidebars to strangers in the hospital waiting room or on line at CVS, asking about them, being friendly, and yes, usually it drove me crazy. Throughout her life she took profound interest in helping people and occasionally it was her undoing. Never was this maybe more true than in the crises that coincided with, or precipitated, the end of her marriage and career – what I think of, perhaps too judgmentally, as her “normal” years. She suffered, without doubt, from some mental tic, but benignly so for the most part, and in a manner that was only debilitating, not destructive. But she could not exorcise her demons or own the consequences of her actions in the drama of her life.

Yet in all her mania – her single-spaced Christmas letter screeds, her unwarranted attacks on my parents and siblings (and me), her weird fundamentalist-themed birthday and holiday gifts, borderline anti-social behavior and paranoia – beneath all that resides the Ardith I will remember, the impish, slightly awkward girl, tall with a mischievous smile and gleam in her eye, who had an amazing capacity to put herself out for anyone she thought she could help, selfless in a way I cannot be, hopeful and trusting in a way I lack the faith or strength to sustain as she did.

Today is the shortest, darkest day of the year. The pagans held festivals of light to ward off such darkness, later neatly co-opted by Christianity, Judaism and other faiths. After today the days once again lengthen and no longer do I want to stop time, stuck in this awful, dark place of grief. And if I would not stop time now, nor would it have been right, if within my power, to stop it months ago, for change is inevitable, loss is inevitable, death is inevitable. All I can control, if that is the right word, is how I cope with it. I can find comfort helping others who face similar sadness, the pain that life can mete out. With it we learn better to appreciate the good times, perhaps even as they occur.

For me also now, here in this dark time, I want to hold up and burnish the light that was my sister. The world would be a better, brighter place with more beacons like her. Sometimes, maybe, its flame was erratic, but it never went out. I pledge to keep it alight. We all have flaws, but we all have strengths, too. The best of her is embodied in all of us, can ennoble us, encourage us to be better than we are. In this way she will remain with me, not a ghost but a guide.

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