We Are All Dead, Not Dying

December 27, 2014 at 11:58 pm (Personal Real Life) (, , , , , )

On 4 May 1991, Star Trek: The Next Generation aired episode 4.22, “Half a Life”, guest starring David Ogden Stiers as the aging Timicin, a scientist dedicated to finding a way to restore his planet’s dying sign. The science would have been fascinating enough, but in the tradition of the classic Star Treks, the episode tackled much more difficult questions and issues. In so doing, they did something rather rare, not just for a television show, but in life.

They asked about dying.

Timicin’s people have a practice called The Resolution. At the age of sixty, a person’s family gathers for time together and a farewell, and the newly-sixty-year-old kills his or herself, offsetting the infirmities of greater age, the loss of the sense of self, and relieving the burden and strain on families obliged to care for those who can no longer care for themselves. This is something in which Timicin has always believed, even as he nears his own sixtieth birthday, but under the dual influences of an unsuccessful attempt to save his sun and the passionate, defiant, acknowledges no obstacles love of the inimitable Lwaxana Troi, Timicin begins to consider a life outside of that tradition, where he might be free to continue his work and live his life.

Also in the tradition of the best episodes in this and the original series, they don’t try to answer the questions. Rather, they admit, openly, perhaps ruefully, that the issue is never as simple as yes or no, or right or wrong. They ask the question and let the characters explore that dangerous, bewildering, sometimes polarizing intersection of perspectives. I always loved this episode, but lately it’s taken on new meaning for me.

Because we as a culture don’t really talk about dying.

Death, yes, we’re all obsessed with death, but only when it surprises us, in a way. We talk about murders, about accidents, about natural disasters. We talk about death toll, and once it reaches truly epidemic proportions, we can even bring ourselves to talk about disease. It’s like we all ascribe to this James Dean sort of immortality: unless we’re taken out, we’ll live forever.

We don’t, of course, but we don’t talk about that. We fill ourselves with death as the unexpected, leaving no room for the everyday sort of things. We rattle off statistics, and despite the astonishing number of life insurance commercials on the television, we don’t prepare for things, not really, because no matter how old or young we are, that’s never going to be us. So we’ll talk about violence from people, from animals, from nature, because it can always surprise us. We’re obsessed with death, but we’re never dying.

Except, of course, when we are, but we don’t talk about that.

We don’t talk about the slow, unsteady decline unto death, the gradual and inexorable loss of self and vitality. We don’t talk about what disease actually does to a person, to a family.

We do fundraisers for cancer research, treating it like it’s any enemy to be defeated, using strategically chosen poster children to create a sense of community or empathy, but it’s only ever as an abstract. Because cancer is depicted in our culture as something that can be beaten, we expect strength and grace and dignity and endless optimism from those who’ve been diagnosed with it. Chin up, soldier, and fight, you’ll get through this. We buy into the commercials that tell us beating cancer is as simple as finding the right doctors, the right treatment centers. We don’t buy into it because we’re stupid (or at least not entirely) but because that sort of relentlessly ignorant optimism is part of our cultural obsession with being vibrantly alive until suddenly we aren’t.

We don’t want the truth about suffering. When we ask someone how their treatments are going, we want to hear “Oh, they’re just fine. You know, I really think they’re working!” or “I’ll be cancer-free in no time!” We don’t to hear about the side effects from the chemotherapy a/o radiation. We don’t want to hear about surgical complications. We don’t want to see the pharmacy of carefully measured risks and interactions spread across the counter, hoping the effects will be more than the averse possibilities. We don’t want to hear about vomiting or dehydration, or being unable to eat. We don’t want to hear about weight loss or hair loss or the ability of cold to make you lose sensation in your extremities. We want our poster children to be brave and bright.

We don’t want to hear about the countless people left abandoned or neglected in sub-par nursing facilities as their needs outstrip the ability or willingness of their families to care for them. We don’t want to hear about the families struggling to keep their loved ones at home through increasing infirmities. We want to hear about our senior citizens doing extraordinary things–being active! Iron Man Nun! We went boating, biking, digging for dinosaurs, whatever the commercials are selling–so we don’t want to think about the inevitable decline of the body. We don’t want to think about the body as a machine that will, no matter we do, one day simply run down and stop.

We don’t want to think of dying as a process.

We don’t want to think of dying as something we can’t stop.

So, culturally, we don’t. We shield ourselves with the unexpected, the unpredictable. We comfort ourselves with sudden, with random, with malice.

We don’t talk about dying.

But we talk about death.

My mother died on Christmas Eve.

She was diagnosed with cancer in May 2013, with what the scans showed to be a very small, isolated cluster of tumors. Surgery showed us it was anything but. The pathology report, however, the thing that would tell us exactly what we were dealing with, took longer than usual to come back. In fact, it wasn’t until I was at BEA, a couple of hours after my ARC signing, that the results came back. My mother had a very rare form of cancer, hence the extra days–the pathologists weren’t entirely sure what they were dealing with, so they had to check with others.

In treatments, most oncology centers lump cancer of the appendix in with colo-rectal and other GI cancers, largely because they don’t know what the hell else to do with it. It’s not a GI cancer, and it doesn’t respond or behave or grow like a GI cancer, but they treat it like one anyway. It’s probably not a shock that these treatments don’t have any inspiring results.

The last time I openly talked about my mother’s cancer, we were headed down to Daytona for a surgery that could have been the miracle we were hoping for. It’s a surgery specially designed for THIS type of cancer by a doctor who specializes in rare cancers, but there’s a narrow window for candidacy. Mom’s scans looked beautiful. Opening her up showed a rather uglier picture. There was far more cancer tissue than the scans had indicated–two to three hundred times what was expected–which meant the procedure couldn’t actually proceed. Our miracle surgery was a failure.

The cancer was going to kill my mother.

Really, it was just a question of when. Despite chemotherapy having shown no signs of slowing the growth of tumor tissue before, it was hoped that changing chemo agents (still GI agents) would at least slow or maybe even contain the growth. My mother’s life would revolve around treatments and side effects, but she’d be alive, and for some people, that’s enough. Some people want all the time modern medicine can give them. Some people want to accept the days left to them and live comfortably, doing they things they want done so they leave nothing behind.

But we don’t talk about dying, and that’s really a terrible thing, because as members of our particular cultural peculiarities, we don’t really have any idea how to approach dying.

We don’t talk about Hospice, or just how amazing a thing that really is. It’s always surprised me that so many people don’t seem to know anything about it, and I was never sure if that was because my mom used to be a Hospice nurse, or if it was because I was a broken child obsessed with dying as equally as with death. Hospice began as end-of-life care in oncology wards in England. When the other doctors gave up on patients, when there was no more cure to be sought, they were just left in corners of wards and forgotten, left to die. The amazing Dame Cicily Saunders made it her mission to make their end of life more comfortable. Where the disease or the decline could not be conquered, she sought to alleviate their symptoms. Eventually this spread to the United States. Today, Hospice serves all end-of-life care, not just from cancer. They work in hospitals, in care centers, and in the homes to assist patients and their families. In additions to doctors, nurses, and nurse practitioners, they have cadres of social workers and chaplains to provide emotional support and resources, as well as an incredibly active volunteer horde to assist in innumerable ways.

We don’t talk about the mindset and clarity–and acceptance–it requires to actually make plans for your death and after. To talk with family members and friends, to make arrangements. We talk about the five stages of grief, but only after death. We never talk about how it can start long before the moment of death. We don’t talk about fear or denial. We don’t talk about the frenetic push for things to do, just to pretend that our end isn’t looming.

It’s not about religion or faith, at that point, or any sort of belief in what does or does not (or may or may not) come after death. Fervently faithful people can still be afraid. People who believe, passionately and whole-heartedly, that death moves them to a better place, can still not be ready to go.

We don’t talk about caregiving, not really. In commercials, sometimes, for nursing agencies, but even those are full of crap. The commercials, I mean. They show gracefully aging seniors being assisted in normal activities by smiling, uniformed people, and sure, sometimes caregiving is cooking a meal or helping to clean, but that is such a tiny, tiny piece of it. Caregiving is riding the emotional extremes of the person you love, and not being able to ride out your own, because your focus is so entirely on the other person. Caregiving is doings things it never even occurred to you might be necessary. It can be giving rides and doing the shopping, but it can also be helping someone use the toilet or take a bath.

Caregiving can be learning every single medication and what they do and when they can be taken and what are the side effects and what can be taken at the same time and what has to be separated and what are my options if she throws this back up? Caregiving can be pretending you’re not gagging when you need to measure the color, consistency, and volume of a bucket of vomit as you’re also making sure there isn’t any undissolved medication in there. It’s talking to doctors and nurses and trying desperately to make sure you understand everything. It’s being snapped at and having to remind yourself that it’s the fear and the pain, not the person, saying these things.

Caregiving is hard. It is hard and it is exhausting and it is emotionally, mentally, and physically draining. It is the single hardest thing I have ever done and, God willing, the hardest thing I will ever have to do, and I was far from alone while doing it. But because we don’t talk about dying, or about Hospice, or about caregiving, we deprive those caregivers of really important support and resources to be found in Hospice.

We had that support. My mom entered Hospice at the end of September, after two hospital stays and the realization that her chemo was actually causing life-threatening problems. Chemo came to an end, and the focus switched to pain and symptom management. Accepting that you need Hospice, though, is not the same as accepting you’re dying.

It’s incredibly difficult to talk about dying with someone who refuses to accept that they are, and nothing in our culture prepares us for that.

Our culture thinks people who accept death and dying are weak, somehow, like they’re traitors for not fighting and denying and burying ourselves in a perceived immortality.

My mom vacillated wildly between denying her impending timeline and morosely drowning herself in it. And that’s normal, sadly, and difficult, and painful, for everyone connected to it. Her doctors told her to gather the family and have an early Christmas, and at the beginning of November, we did. We had Thanksgiving a few weeks later. My brothers came down on more weekends than they ever had before. Some days it felt like the house had a revolving door, there were such constant streams of visitors, overlapping each other.

As her symptoms got worse, the medication got higher. A LOT higher. My mother–an incredibly active woman who used to run COPE courses and lead Boy Scouts on hikes and camp outs–was increasingly confined to bed. We had to get a wheelchair for the few longer outings she could still tolerate, like the giant craft fair she and I have gone to together every single year as our one big Mother-Daughter tradition. After getting called at four thirty in the morning because she’d fallen and cracked her head and was unresponsive, we had to get her a walker, and then hound her endlessly to use it, because it’s one thing to know, in a professional sort of way, that your body just can’t do this anymore, and completely another to obey it, to accept it. More and more, we had to help her with medications, and with using the bathroom. When the narcotics and relaxants were at their mega-doses, and she was rather less than cognizant, we had to make sure we repositioned her fairly regularly, so she wouldn’t get bedsores. We had to repeat conversations, and try to parse through the confusion and aphasia that wasn’t entirely the fault of the morphine. As we tried to start making arrangements for After, we had to accept and try to work around the resistance, the insistence that it wasn’t necessary.

My mother fought like hell against something she couldn’t ever hope to beat, and she fought right up until her last breath at 10:25 pm, Christmas Eve. And I have to wonder: if we a culture were more open about dying, would she have fought so relentlessly?

Because that’s our other myth about dying. When we can accept that it happens, when we can somehow manage to work against the prevailing atmosphere in order to talk about it, we have this image of serenity. Surrounded by loved ones, the dying person smiles, closes his or her eyes, and simply lets go on a seraphic sigh, all peace and grace and dignity.

I hope I never again have to hear the sounds my mother made as she struggled to keep going. We clustered around her, holding her hands, touching her, telling her it was okay, we were okay, she could just let go, because we could see how anxious, and restless, and miserable she was. She wasn’t responsive by then, but still fighting like hell against a force that was always, always going to win. We tell people to make the most of life. We tell them to fight, we tell them to cling, we tell them to always focus on how much we have left to do.

So we don’t talk about making your peace with what you’ve done, and what you will never do. We don’t talk about letting go.

Through that silence, that willful ignorance and relentless optimism, we hurt not only ourselves but our loved ones. We, as a culture, cannot handle dying.

In “Half a Life”, Timicin’s people came up with The Resolution in an attempt to be humane and compassionate, to spare themselves the indignities and infirmities and decline. They did it as a way for families to come together and make their farewells, to leave nothing unsaid. They did it as a way to meet death with dignity. We see a number of perspectives in what follows, and they’re paralleled in real life by all the arguments surrounding physician-assisted suicide, and extended into the debates about living wills and do-not-resuscitate orders. The conversations are only half-formed, though, because we refuse to talk about them in practical measures. The ideas, the concepts, the abstracts, those we can discuss. The ethics and philosophies. Faced with the reality, though, we turn away.

We’re all dead, but never dying.

Timicin makes his choice in the fiction, and my mother made hers in real life. Neither was easy. Neither made their choice without doubts.

My mother was a pretty amazing woman. She was a dedicated nurse and Navy officer, and her three favorite areas of nursing were neonatal, Hospice, and teaching. The full spectrum of birth to death. Despite working insanely long hours at most of her jobs, she was involved in all of our activities. Church, choirs, Youth Group, Sunday Schools, Bible studies, soccer, baseball, drama, dance, French club, competitions and field trips and projects. She started a Boy Scout troop and led it for ten years, one of the first female Scoutmasters. She faced derision and insults and sabotage, having to stand in a line across from entire troops of boys and adults chanting “No women in Scouts!”, and rather than return insult, rather than succumb to indignation or hurt, she and her troop won the campwide Spirit Award, and she carved out a name for herself in the Council as a Scoutmaster whose Eagles truly earned that distinction. She also started a Girl Scout troop, and there was very little more funny than my sleep-deprived, caffeine-deprived mother teaching a group of eight-year-olds how to make campfire coffee simply because she was going to scream if she didn’t get that black elixir. The Boy Scouts similarly learned not to approach her until she’d had her first cup of coffee. Preferably the second, maybe even with the third in hand.

My mother spent one Christmas Eve with a flashlight in one hand and a golf club in the other because the snake my brother was baby-sitting got out of its cage.

She spent another in the emergency room, after my Advent candles set a portion of the furniture on fire.

Christmas was really her Thing. The tree was always perfect–not in the showhome kind of perfect, but in the sense that chaos came together to really mean something. We had store-bought ornaments, some because they were meaningful and some because they were pretty, and we had craft-fair handmade ornaments, but our tree always had more clumsily or beautifully hand-made ornaments that were family. And Mom was the only one allowed to put on tinsel. The rest of us would toss it on, letting it fall like flurries of snow, but she’d place it strand by strand on the branches. The presents she wrapped were works of art. Baking smells filled the house, and then later there’d be cooking smells, too, and all of it wonderful. And there was music. My mom had an incredible voice, and every year during Christmas Eve services, she sang “O Holy Night”. One year (the year of the fire) we found an incredible dress shirt with a glittery tree and cuffs (and it was actually a beautiful shirt, even though it sounds like anything but), and as she sang, she’d lift her arm, and the lights would spark off the bit of cuff that came out of the choir robe, and it was like she had her own halo. I sang that song at other services some years, and other songs during others, but even when I sang it, it was still Mom’s song.

My mother was passionate about education, both receiving it and giving it. She believed fervently in continuing education for nurses, and was most of the way through a Masters program to become a Family Nurse Practitioner when she was forced to take a medical leave of absence. She was a teacher, both in profession and in spirit. She passed a thirst for learning on to her children. And she was a caregiver. It wasn’t just a job, it was a vocation. A calling. She was fiercely proud of us, even when we made mistakes. It got a little embarrassing, sometimes, that everyone she talked to just HAD to know that I’m a published author (and here’s something I never thought about with publishing–just how freaking hard it is to write an inscription to your mother!) but she was just that proud of me. My brothers, too, even when we struggled to find a path or stick to a path or just plain make the path work.

She had her faults, of course, and I was by no means blind to them, but at the end of the day, I was lucky to have a mother who was both my mom and my best friend, but always my mom first. The past nineteen months have been hellaciously hard and painful, but even at its worst, there has never been a point when I haven’t been grateful that I got to be here with her and for her. Even being unemployed for year, which otherwise sucks, seemed like a gift, because it meant that I got to be there, and as things declined and that became a necessity rather than simply useful or indulgent, I didn’t have any obstacles preventing me from being where I wanted and needed to be.

My mother didn’t die peacefully or gracefully, she died fighting, and our culture says we’re not really supposed to talk about that. If it doesn’t fit into our myth, it’s supposed to be left alone, because death should always be something unexpected. Death should always be something we can’t fight, so that way we don’t have to face what happens when we lose.

But my mother raised me to talk about it, so I am. We all make our choices, but by choosing to talk about it, no matter how hard or painful or impossible it is, I’m choosing not to be afraid of it. We will all be dead. We are all, little by little or step by hurtling step, dying. We don’t have to live our lives in spite of that. We get to live our lives with that, knowing that there is an end to all things, that we belong to a natural order in which death and life are intertwined. We get to exist in this miracle we call life.

We just need to start accepting all of it.

Katherine Ann Hutchison 9.1.1952-12.24.2014

Katherine Ann Hutchison
9.1.1952-12.24.2014

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7 Comments

  1. pheonixgate said,

    Thank you. Thank you for posting this, and I hope you know how very amazing your mom (and your entire family!) sound to me. Some people get to die suddenly, others beat their cancer, and yet others drag on to a point where they wish they could make the decision themselves…I truly adore you and hope you know it.

  2. Bev Knudsen said,

    Dot – thank you for using your gift in this way. Your mom said to me recently “I never got to do everything I wanted to do… I never got to be everything I wanted to be.” I told her that everything she ever wanted and everything she could ever hope to be came right through her… You and your brothers. She has always been so proud of all three of you and the promise and hope of your future contributions.

    When I lost my best friend this summer, someone sent me the following quote… and since you and your mom were besties I think it fits for you two as well. Love you my dear niece. Bev

    Thoreau: “On the death of a friend, we should consider that the fates through confidence have devolved on us the task of a double living–that we have henceforth to fulfill the promise of our friend’s life also, in our own, to the world.”

  3. Sharon Spence said,

    Thank you so much for posting this, for writing so clearly and lovingly about the process of dying. I am my mom’s caregiver, she lives with me and find myself increasingly worried about the next stages. I will look into hospice care now that you have pointed out its benefits, and I will continue the conversation I have started with great trepidation with my mom, about her wishes. Hers is a decline into old age which is increasingly debilitating and frustrating for her and, needless to say, for me. I find great solace in knowing that I am not alone, and in hearing truth spoken beautifully. Thank you.

    • Dot Hutchison said,

      I’m sorry to hear about your mother’s decline- I definitely recommend Hospice. Even though my mom was former Hospice, and her roommate worked Hospice for many years, I know that we could not have done even half of what we did without the care and support of Hospice programs. I wish you strength, patience, and fortitude for the journey ahead.

  4. Judy Catches said,

    Precious Dot,
    Although your mother has passed into the next chapter of her existence, you are here to remind us of the wonderful, energetic, tenacious, feisty, beautiful woman she was. You are the best part of her.

  5. Amanda Gaume said,

    Thank you so much for this. I am losing my grandmother now to a rare form of cancer (untreatable). She has been a major anchor in my life (my daughter bears her name) and I can’t imagine not having her. Your words have both shattered my heart and given me hope. My heart goes out to you. Deepest sympathies. *hug*

  6. Cheryl and Wendell Porter said,

    Dot; We just saw your Mother’s obituary in the paper today. I’m so sorry to hear of her passing. She was a most remarkable woman as your article so beautifully describes. Our thoughts are with you and your brothers now.

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