A Pain in the Neck

On good days, or during a string of good moments, I sometimes feel content enough. On bad days, I feel as if I’m already dead and am simply haunting my old life. I’m weak and there’s a litany of things I can’t do. I’m like a ghost trying to cause a light bulb to flicker or making a door creak. I’m taking up space in a world where I no longer belong. But I’m stuck here, like an unsatisfied spirit, doomed to wander through what was once my life. It now belongs to cancer, not me.

With my thoughts often turning to mortality these days, I sometimes contemplate the afterlife and, inevitably, Nikki Sixx.

Everyone has different views on what happens after you die—reincarnation, heaven, nothingness. Some people who have had near-death experiences report seeing a bright light and having a sense of peace. Presumably that means something good is going to happen. When I was a junior in high school, our French class had a visiting mime, bien sûr, and I remember that he told us—when he wasn’t in mime mode, obviously—that one of his projects involved a documentary about people who didn’t see a bright light during a near-death experience. They felt something dark and terrible and saw something akin to writhing demons. His job in the project was to writhe.

This alternative concerned me. What brings me some comfort, however, is the story of Nikki Sixx that inspired the Mötley Crüe song, “Kickstart My Heart.” According the Mötley Crüe autobiography The Dirt (I haven’t read Sixx’s The Heroin Diaries), when the bassist overdosed on heroin in 1987 and was declared legally dead for two minutes before he was revived, he saw his body on the gurney as he left it and he saw a bright light. He lived a life of rock star debauchery and saw a bright light!

Since then, when I wonder if I’ll see a bright light or writhing demons, I think to myself that as long as I’ve lived a life more virtuous than that of Nikki Sixx, I’ll be OK. Still, I don’t know him, so it’s hard to compare. What if rock stars are judged on a giant curve? What if bassists get special dispensations? (I took bass lessons a long time ago, but I’m no Sixx.) What if God loves “Shout at the Devil?” (Who wouldn’t? It’s a great song.)

I saw Sixx speak at a David Bowie event in December, but I was too shy to even sneak a photo, let alone ask him what he thinks happens when you die. Do we all get our own custom paradise? I feel like he would have a fun one, but maybe with all the debauchery on Earth, he’s content with the simple pleasures of a rose garden for eternity. Whenever I picture trying to have a good time, though, I picture a Mötley Crüe video. It’s how I feel as if I should spend my limited time, but, of course, cancer doesn’t allow for debauchery, and I don’t think that’s probably what I would actually do to live life to the fullest.

It’s one of those things I think about when I should be spending more time thinking about useful things.

As a former goth girl, I’ve spent a lot of time thinking about death. Drawing skulls on notebooks, taking the occasional photo in a cemetery…and that’s about it. I wasn’t a very good goth. I really just like wearing black and listening to the Cure.

Before my black-clad teenage years, though, when I was a little girl, my mom had me read all about the lives of the saints. It wasn’t all martyrdom and gruesome ends, but of course that’s what stuck with me the most often: St Winefride, who was decapitated by a suitor when she became a nun; St. Germain, who suffered from physical ailments and slept on a bed of twigs; St. Lucy, who plucked out her own eyes; St. Maria Goretti, who was stabbed to death during a rape attempt; St. Ignatius, who was fed to lions in the Coliseum; St. Lawrence, who was grilled and reportedly said, “I’m well done. Turn me over!” (Though I was also particularly fascinated by the story of St. Felix, whose life was saved by a spider; I still try not to kill spiders to this day.)

Catholicism—particularly my mom’s brand—didn’t shy away from death, from the souls suffering in Purgatory to Ash Wednesday’s reminder that we will all turn to dust. My mom taught me this rhyme, “Whenever I go by a church/I stop and make a visit/So that someday when I’m carried in/The Lord won’t say ‘Who is it?'”

When I was in second or first grade, my mom would send away for cassette tapes recorded by a priest who had some theories. It was the early- to mid-’80s, and the priest shared his thoughts on the AIDS epidemic. On one of the tapes, he said that HIV was so contagious that you could get it just by touching something that someone with HIV had touched. Over Christmas, while my cousin and I were playing with our knock-off Pound Puppies, she told me that her sister’s boyfriend had contracted HIV. I spent a week thinking that I had AIDS and was infecting everyone. My grandparents even took me to Burger King to cheer me up (we never went out to eat, so our bimonthly trips to Burger King or Arby’s were a big deal) and try to find out what was wrong with me, but I kept the news of my imminent demise to myself. That miserable week, when I went back to school, I tried not to touch much but I was convinced I was silently killing everyone with my presence. I don’t remember what snapped me out of my gloom. I might have finally said something to my mom.

I was kind of a weird, morose kid, acutely aware of the problems of the 1980s. I was also resigned to the possibility of being obliterated by a nuclear bomb during the Cold War. I made sure to tell my mom and my grandparents every night that I loved them before going to bed, in case it was the last time I saw them.

Death has always been a presence as an inevitable part of life; I’d always known my father died when I was a baby. My great-grandfather died when I was 4. In a religious household, you’re somewhat always preparing for death, or at least living with an eye to the afterlife. In the stories of the lives of many of the martyrs, they were beatific when their eyes were plucked out or making jokes while they were cooked alive, because they were at peace with how they’d lived their lives and had an afterlife awaiting.

I have been following the blog of a friend of a former workout pal. She has been blogging about her colon cancer and has a book coming out on Random House, and she writes about death in a more eloquent way than I do. In one of her posts, she wrote about reading Piers Anthony’s Incarnations of Immortality series. “The first book was about the Incarnation of Death with the Angel of Death coming to end people’s lives when their time came,” she writes. “I don’t remember anything from those books except one statement and image. The Angel of Death said that anyone who believes in nothingness after death will experience nothingness.”

Now that the end of life is approaching, I know some may be concerned about what happens after death. Although who knows how much time I have left? I could have years or months. They have stopped saying decades. I might have a long time to say goodbye, or it might come quickly. Some people live for years with these debilitating symptoms, and I don’t want that. Some days, when I feel particularly sick and bad, I would go immediately if I could. I have little affection for this life of diapers, IVs, shots, medications, and near constant discomfort or pain.

Different people in my life have varying beliefs, ranging from nothingness to a Catholic afterlife of angels playing harps on clouds. No matter what your beliefs, though, a happy death—or being at peace with death—seems to hinge on a good life. (Of course, what constitutes a good life also varies based on belief.)

One of my favorite books is actually A Happy Death by French Algerian philosopher Albert Camus. While The Stranger is Camus’ most famous work, which we read in AP English (during my black-wearing days), I preferred this unfinished book that wasn’t published until 10 years after his death.

The book starts (spoiler alert) with the protagonist, Mersault, killing Zagreus, a man who amassed a bit of wealth before an accident took his legs and left him dependent on others for his care, and filling a suitcase full of money. In Mersault, Zagreus sees a man like himself, who thinks it’s one’s duty to live and be happy, however, Zagreus is bitter about his accident and thinks that he cannot realize happiness in its fullest state as he is. He also believes that to have money is to be free of money and to have the time to find happiness. This gives Mersault the freedom to philosophize and pal around with some of his friends in “The House Above the World,” marry a woman he doesn’t love, find solitude, and come to some conclusions that allow him to die a happy man “without anger, without hatred, without regret.”

I don’t have a suitcase full of money or a sun-baked home in North Africa, but I am, for the most part, satisfied with my life. I’ve hated a lot. Maybe more than most. Years ago, I dated someone whose family owned a funeral home, and, knowing my penchant for holding a grudge, he promised that if something happened to me, he would tie a string to my middle finger so I could show my displeasure to people I didn’t like who might show up.  But at this point, time has faded a lot of the perceived injustices, vanquished my nemeses, allowed wounds to heal. I’ve tried to forgive—or at least distance myself from—those who try to steal my joy.

I’m angry a lot. I’m angry at the disease. Like Zagreus, I’m angry at my quality of life. Sometimes I’m just angry in general, and in this particular political and social climate, it’s hard not to just be angry all the time. I’m angry at the insurance companies and that I have to spend so much time fighting for prescriptions and payments.

For the most part, I have few regrets. Most of my regrets are second guesses about selling the house in Ohio. Many things I’ve done over the years might cause me to wince upon remembering them, but I don’t think there’s anything huge. I would have maybe had children. But then I would have to leave them now, and it would be harder for me to let go. It’s hard enough to leave the cats. I’m at peace with how life will go on without me.

It’s impossible to wrap up a life into a tidy package, and leaving loved ones are the messiest parts. As for the rest, I’m trying to take stock of my life, updating my freelance portfolio, selling things from my closet, finishing up projects. I could have years left, and even if I do, I still wouldn’t be able to finish everything. I’ve been looking for a duvet cover, but it hasn’t turned into the consuming symbolism that Nina Riggs faced during her search for a couch as she died of breast cancer. I have books to read, shows to watch, projects to finish. A friend who wrote a book about her chronic, rare, fatal disease says she too is haunted by the thought of not knowing how some TV shows will end. If you can imagine your own afterlife, I hope it’s a place where you can find out how TV series ended. I hope it’s a place where I have access to the never-filmed second season of Carnivàl. (My own Sartre-esque version of hell, in case you are wondering is a constantly cold place with a ski slope, a dueling piano bar, really slow WiFi and no cats.)

I try not to spend too much time thinking about what I could have done differently. Any changes might have been at the cost of something else. I was finishing baking an olive oil cake a few weeks ago and I wondered if I should have baked more. But then I wouldn’t have time to do other things. I’ve spent a lot of time freelancing, but that’s so I could live in New York, one of my favorite places in the whole world. I’ve been lucky enough to do something I enjoy—mainly writing—and it doesn’t pay a lot and I’ve had to take on extra work here and there but I prefer it to making a lot of money at a job I would hate. I’ve written a lot of things, and while I don’t think anyone is pining to read my story about ornamental vines, I’d like to keep my articles for posterity.

Overall, I am at peace. I’m more afraid of the years or months of being sick before death. More than death and its promised release, I am terrified that I will live for years like this, sick and in between worlds.

I haven’t led an extraordinary life, but it’s been a mostly happy one. I used to have these words from A Happy Death up on my wall at various apartments, as a reminder to live well. “He realized now that to be afraid of this death he was staring at with animal terror meant to be afraid of life. Fear of dying justified a limitless attachment to what is alive in man. And all those who had not made the gestures necessary to live their lives, all those who feared and exalted impotence—they were afraid of death because of the sanction it gave to a life in which they had not been involved. They had not lived enough, never having lived at all. And death was a kind gesture, forever withholding water from the traveler vainly seeking to slake his thirst. But for the others, it was the fatal and tender gesture that erases and denies, smiling at gratitude as at rebellion.”

If you asked people if I like kids, quite a few people would say no. That’s not true. I don’t dislike kids; I’m just not big on people, and children are small people.

Let me explain.

I’m not exactly a misanthrope. I’m shy, but I enjoy the company of others. I’ve been fortunate enough to surround myself with good people and quite often, people have shown me great kindness. I believe that people can be selflessly good.

However, I also believe the opposite is true: People can also be absolutely terrible. If you don’t agree with my pessimism regarding humanity, just read the comments section of just about any article online or most social media debates. Read posts from people who threaten the survivors of the Parkland school shooting, read why people eat Tide pods, watch YouTube videos of people pouring water over an orange to prove the world is flat. (I’m concerned about this celebration of ignorance. It’s as if, when presented with too many facts and too much information, humanity is overwhelmed and begins to shut down.) People like this and this and this and this exist, and every day, it may seem as if a new cast of deplorable people are shown to us.

Does that make me a pessimist or a realist? I think one of the reasons Maggie Smith’s “Good Bones” poem struck such a chord with so many people and went viral was the acknowledgment, “The world is at least fifty percent terrible and that’s a conservative estimate.”

Perhaps focusing on the negative sometime helps me deal with the thought of leaving this world. I am angry at my body, but I’m also angry at the world sometimes. I want life to show me how beautiful it is and beg me to stay. But sometimes, it’s ugly. And it’s not just me who feels this way; so many people are angry all the time. A recent column in The Washington Post posited that “Our anger is poisoning us.”  I’m actually being poisoned, physically, on a regular basis, and it’s sometimes hard to not let my anger turn into the soul-killing kind of poison. In fact, it’s impossible. I acknowledge that and just try to be aware when I feel the unneeded poison enter and I try not to let it spread too far.

I often believe it’s safest to hope for the best and prepare for the worst. I am convinced that one of the reasons the horizontal age line in my forehead aren’t very pronounced, is that (aside from genetics) I am not that often surprised by people.

My view of the world has influenced whether or not I thought I would have children, and it’s why I was still waffling when I turned 35. Motherhood isn’t something I actively pursued, but until my cancer diagnosis five years ago, it’s something I thought would eventually happen. A few years after my stem cell transplant, I was expected to get the green light, but shortly before then came the pancreatic tumor. And then the other tumor. After the liver ablation, if I was clear, it’s still something I could have pursued, but not now. I have to call a doctor’s office at some point and tell them to unfreeze my genetic material. I want them to create a clone army or a mutant strain of superpeople. But I think they just thaw it out or use it for research.

It’s really the loss of my genetic strain that bothers me. When I see people with children, I don’t have an envious tug of lost motherhood or grieve for what I won’t ever have. I want to continue somehow. Selfishly having children to avoid feelings of your own mortality is probably not the most noble reason, so it’s probably best that the decision is off the table.

Look at this childcare situation. It’s for the best I don’t have children.

Still, I sometimes feel the loss you feel when a door in your life closes permanently. I wish my mom could have been a grandmother. What will happen to my old toys that we saved for future generations? Sometimes, I think, What was the point of all that, if I was just going to die early and leave nothing of myself behind?

But another reaon I hesitated about having children was that I was worried I couldn’t be that vulnerable. How do you send a piece of your heart out into the world, unprotected? How do you create someone who has the ability to bring you so much joy and wound you so deeply? How can you ever let them out of your sight? After the Parkland shooting, I realized how grateful I was to be able to keep my three cats inside all the time and away from people who might hurt them.

How do you deal with someone hurting your child? A kid on the playground calling him names? A first heartbreak when you’re sure you will never heal? A bully?

Some of the worst and most cruel things ever said to me were out of the mouths of kids, when I was a kid. My mom told me that it would get better. She had been through it herself. But at the time, it was tough. I was overweight and funny-looking and wore weird clothes, and for most of fifth and sixth grade, I would spend recess standing against the school wall because I had no friends. It made me a nice big, easy target for people when they got tired of running around and wanted to try out a new taunt. When I lost the weight, I was (am?) still funny-looking, but by sophomore year of high school, I tried to be funny-looking and wear weird clothes on purpose to avoid getting teased too much. Looking a bit scary and uninviting worked for me.

So many online quizzes are devoted to finding out if you’re an extroverted introvert or an introverted extrovert. I haven’t taken one, but I took that Briggs Myers test a long time ago at a therapist’s urging, and I’m an INFP that is on the border of introverted, I guess. I like people well enough, but I’m pretty shy. I’ve devoted a lot of my life to trying to be someone invisible and getting people to leave me alone. Being an older, sickly woman made me invisible within the past few years and I’ve enjoyed it immensely but that’s another blog post I have been working on.

I’m an only child, and I grew up mainly around adults, with my mom and my grandparents, on a small cul-de-sac that didn’t have too many kids. There was a girl about four years older than me next door who would sometimes play, and some kids down the street, but no one really my age. My mom played board games with me in the evenings, and I vividly remember forcing my family to eat tiny sandwiches and drink coffee from tiny tea set cups for lunch one day, chastising my grandfather for using a large coffee mug instead of having 10 tiny cups. I would listen to adults’ conversations, and to this day, sometimes I get quiet and listen to conversations flow around me rather than actively participate.

One set of neighbors either didn’t like children or just didn’t have them. I think I was told they didn’t like kids, but they would sometimes babysit me. I can’t imagine they actively disliked children, especially after they put up with me crying the entire time my family was gone when they babysat me the first time. The neighbor gave me Viewfinder wheel slides of LTV Steel, where she worked. Sometimes when my family would go over to their house, they would make me Shirley Temples, with ginger ale and cherries. I loved having Shirley Temples while the adults talked and visited.

I was fascinated by people who didn’t like children. Weren’t they children at one time? I wondered. Yet by the time I got to kindergarten, I understood a little bit. Kids cut in line sometimes, and they didn’t let you win at games like adults did, and they had weird rituals. For instance, I had to spend all of Monday (Marriage Days) avoiding contact with any boys or I’d have to marry them. I think Tuesday was opposite day and so I had to spend the day saying the opposite of what I meant. It was exhausting. Friday was Flip-Up Day, the day when the boys would flip up the skirts of our Catholic school uniforms, so you had to wear shorts underneath your plaid romper. (Catholic school was rough, but I guess Flip-Up Day prepared us for the patriarchy and harassment way in advance. See? I’m not cynical. I am just prepared.)

Whenever someone didn’t like kids, my family would give me a stern warning to behave. I understood, to some extent, that I was an ambassador of children, a representative of my kind. My grandfather had a cousin we would sometimes visit in Southern Ohio, and we gave her the title of aunt like you do with family sometimes. She had two cats: Perky, an orange tabby, and Pretty, a fluffy white cat. I loved going to see the cats and that I still remember the cats’ names after all these years point to my future as a cat lady. We went on a trip with her on a river somewhere or to St. Louis (I was pretty little at the time and non-cat-related details are blurry but we saw a ship in a bottle that her late husband made, I think, at some point), and my mom and I shared a room with her. I was taken aside at some point by my mom, who whispered that my aunt wore a wig and I shouldn’t stare when she took it off. At night, she took out a wig stand/wooden head and placed her hair on top of it, but I dared not take too long of a glance, like it was Medusa’s tangle of venomous snakes.

Things were OK on that trip at least, and I didn’t ruin things until my uncle’s wedding when I was around 7 or 8. She had traveled with us to West Virginia, and we dressed for the wedding and having breakfast at our hotel. I was drinking a glass of milk and was putting a spiral/slinky-type bracelet around the rim of the cup and my mom told me not to do that because I might spill it. I was usually pretty good, but I kept doing it anyway, and sure enough, I spilled my milk. Right into my aunt’s lap. She was wearing navy, of course, and when she blotted it with a tissue, it made things much worse. As she cleared the milk from her lap, I realized, “This is why she doesn’t like children.”

I don’t want to be that person.  It’s not that I don’t like children. I love my friends’ kids. It stands to reason that people I like have produced other people I like.

A small part of me is sad that a door to my life is permanently closed. Another part of me thinks that being a cat lady was always my destiny, and things have worked out just as they should have.