The Status of Pain

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By Ally Mauro/ Flickr

By Sonya Huber

A friend at a writing conference asked me how I was doing. I said, “Pretty good, all things considered.”

“That’s good,” he said. “All I see on your Facebook page is ‘Pain, pain, pain.’”

I gave a half smile and a knowing shrug to get away from the conversation, but my brain buzzed with distraction, embarrassment, annoyance, and a bit of curiosity. That’s all I’d managed to leave as tracks on his brain: pain? Was he razzing me in a failed attempt at flirtation, or maybe trying to be sensitive in a backhanded way?

Then I began to worry that I’d set up an inadvertent Wailing Wall on social media, even though I’d tried to do the opposite. I had made a conscious decision to post as little as possible about my medical adventures with Rheumatoid Disease and Hashimoto’s thyroiditis.

Sure, I needed to vent. After scrolling past enough pictures of people’s dinners, rock-climbing feats, and dogs, I felt compelled to put a bit of myself into the maelstrom. And sometimes I wanted to share that my small life was also part of the big picture of life, even if it was posted from flat on the couch.

The last thing I wanted to become on social media was what I felt like in real life: pain, pain, pain.

•••

When I was in college, a young woman in philosophy class told us that she had chronic pain from ulcers. I couldn’t fathom it. Pain, like stubbing your toe, but all the time? Wouldn’t that drive you bat-shit crazy? She was beautiful and a campus athlete, and I began to revere her from afar as some kind of saint, which was the reference point I had for unrelenting suffering: that it ennobled.

Lucky for me, I had exactly twenty more years to live my lovely normal life, filled with sex and sports and walking and soccer and sleeping late and hardly ever having to fill prescriptions. My body could swing and shake and dance for hours. Eventually my immune system revved up into crisis mode when I was in my late thirties, which catapulted me into rheumatoid disease. It’s systemic, autoimmune, and incurable. My joints hurt pretty much all the time. I’m four years into the rest of my life, the part that comes with pain.

Since then—in case you’re tempted to share with me your quick fix—I’ve tried everything, and I manage stuff like a pro. Supplements, exercise when I can, a new diet, medications, acupuncture. I work it like a job, and I have to say I am as responsible as one can possibly be in caring for this very needy pet. But although pharmaceutical company commercials want us to believe that new drugs make life better for everyone, the drugs for my condition don’t work all the time, and they don’t erase pain.

•••

Pain itself is a weird experience, but you get used to it, even if it does drive you a little bat-shit crazy. It’s as tiring as parenting a newborn. It creates so many interesting conundrums and challenges. You can imagine it as adding a World of Warcraft addiction or a constant remodeling of one’s kitchen to your already busy life. That’s what it’s like: a weird project that you have to manage in addition to everything else you already have going on. A weird project that will never go away. Imagine remodeling your kitchen for the rest of your life.

People who don’t know pain think it is really depressing. This makes sense, because it is the core biological imperative for preservation of one’s existence: avoid pain. Run, in fact, from any mention of it.

When I post on Facebook about being in pain, or admit to pain in a casual face-to-face conversation, I read the winces in the emoticons, and I feel and see the edges of my friends’ mouths pull back in grimaces of displeasure, winces of agony, as if they themselves are feeling discomfort. As if, in mentioning it, I am the one hurting them. They don’t want to talk or hear about pain. But they have questions, and they are embarrassed to ask. Some friends do ask, and I have loved how they listened as I tried to describe it. I feel very cared for in those moments and immensely relieved.

It’s hard to figure out what to do with this pet Pain I have if I can’t post picture of it on Facebook. It’s not going anywhere, and yet the thought that it makes other people uncomfortable adds to my own discomfort. Not only do I have a physical problem to deal with, but I also have to feel guilty and watch that I don’t inflict thoughts about pain onto other people like some kind of social contagion. People want to fix pain or to convince themselves that it’s not that bad. They want to tell you their grandmother cured her osteoarthritis with cactus juice. I’ve done the same for different difficulties, responding with vague clichés about “what makes us stronger” when friends have lost parents, marriages, jobs, and medical battles.

It’s hard to know what to say. It’s easy to say the wrong thing in those situations.

Sometimes it’s harder to watch someone we love suffer than it is to suffer one’s own pain. I can’t do anything about this pain (aside from seeing my doctors, getting on the treadmill, and eating turmeric and fish oil like candy) but at least I can know it. And that’s what causes anxiety for others, I think, and for me when I’m on the other side of a skin barrier from pain: it is unknown, unfathomable.

•••

I decided to read through a year’s worth of my Facebook posts to assess whether this friend’s comment about “pain, pain, pain” on my Wailing Wall was accurate. Because I love Facebook, I had hundreds of my own inane status updates to click through, mostly quotes about writing, teaching, books I loved, political activism, or events on my campus. I had posted links to articles on fighting racism, pictures of my family, jokes, laments about my dying car, and a photo of a squash that we’d kept on my kitchen table for over a year because my son drew a face on it with a permanent marker. I posted about getting solar panels, my love of the cartoon Adventure Time, and many thoughts on the Affordable Care Act. I posted ideas for imaginary band names and jokes about Star Wars, as well as an update on happened when I spilled a full can of seltzer on my desk. I posted about the sport of soccer-tennis, a trip to Hong Kong, kayaking, and the zombie apocalypse.

Throughout the whole year—June, 1, 2013 to June 1, 2014—I discovered six posts about my illness. Three of these were not about my own situation, but instead links to content created by other people: a graphic about national awareness day for Rheumatoid Disease, a link to a survey about Rheumatoid Disease, and a link to a book about coping with chronic pain. The remaining three posts gave updates about my own health situation, all within a few weeks last summer in which I had a thyroid crash and was having problems with my energy levels. One was a simple apology that I was having trouble returning emails in a timely fashion because I wasn’t feeling well. The second: “When I have the energy, I’m going to write about finding the energy to parent with an autoimmune disease.”

And the third: “It turns out that giving up caffeine after a 22-year habit is actually not that big of a deal if you have RA. I have learned this morning that my pain tolerance and my pain levels are both so high that a teeny little caffeine headache barely registers. It’s kind of cute, this little chemical headache trying to act all important.”

Two posts for the entire year had mentioned “pain” by name.

•••

In that last post, I injected some humor, as I know I should when talking about illness, as a way to sweeten the subject and not drag my friends down, but also because it’s one of my own coping methods: I have to laugh at it. At the same time, I was trying in that status update to give myself a little credit: I do have a high pain tolerance. People in chronic pain are often desperate for a sense of how others might experience their level of pain, not to share the misery but because they would like to know whether they are merely being overly sensitive or whether they are dealing with something that is as epic as it feels.

This is all complicated by the fact that pain research shows that a chronic pain sufferer’s nervous system can get activated and become permanently on alert, so that everything does feel like agony. The question is epistemological, as all seem to be: how would this pain feel to another person? That’s impossible to know, because pain is not an abstract essence. It is an experience, a process.

•••

My friend might have been exaggerating, but I believe his comment, and his memory of the “me in pain” that I’d shared on Facebook, meant something, despite the fact that it was factually incorrect. Pain is searing and it creates an emotional connection. Expressing pain affects others deeply, creating discrete and uncomfortable memories. One expression of pain, and that is what he remembered. This, too, must be keyed into our species’ survival.

When I thought of this friend and his own online persona, I happened to remember most vividly a few honest posts he’d made about his own troubles. It could be that empathy burns those associations into our brains, and that we vividly remember the strong emotions that are drawn forth by the agony of others.

The question, then, is whether even a few honest statements about our conditions become what people see when they think of us. If we are vulnerable, will people automatically associate our whole beings with those moments when we are at our weakest?

•••

Maybe as a result of this awareness, which began well before his comment, I’d also been consciously checking myself. I felt embarrassed after I posted more than one thing about my health because an administrator at work who is also a Facebook friend said, “You’ve been very honest on social media about your medical issues.” He said the word “very” like I’d done something scandalous and unwise, or as if I were into an odd hobby like sticking goldfish up my nose. Or as if admitting to Rheumatoid Disease was akin to posting a picture of myself doing a kegstand. He’s one of those administrative types that make you feel like you might be in trouble for everything. He kind of has principal voice.

After his comment, I got a little paranoid and decided to post less on social media about my pain, partly out of vanity: I didn’t want to be depressing. I wanted people to see me as someone who had more going on in my life than pain. I wanted to be seen as sexy, lively, cute, funny, and relevant. Smart. A thousand other favorable adjectives to please my ego. So maybe vanity won over honesty, or maybe I was trying to condition myself to focus on more than the pain in my joints.

After I’d made the promise to myself to craft an ideal version of myself, a witty well-read upbeat figment of my imagination, another friend said, “I noticed you haven’t been posting stuff about your health on your page. You must be doing well. I’m so glad.” I wanted to tell her about my continued troubles, about the complicated nature of invisible disability, but I said nothing. We hugged and rushed off in opposite directions in the middle of some event.

•••

I have gone back and forth about what risks I take when I publicly acknowledge on the Internet that I am sick. Or that I am me plus a sickness, or however I might want to describe it to make myself feel better on a particular day. For a while, I thought that sharing would actually protect me, because I figured that the more people knew, the more they’d be required not to discriminate against me. But this is a whole other legal and medical privacy conundrum. I know, ultimately, that the social protection of sharing outweighs any of this, because I stumble slowly into networks who will be truly supportive when the chips are down.

I know that the data I post on social media might be used for specific marketing purposes and is public in a way that might have an impact on me in the future. I can’t be denied insurance for a pre-existing condition under the Affordable Care Act, but new methods of discrimination are always being hatched. Still, this condition is already recorded everywhere in my records, so I’m not safe anyway.

I can’t maintain a cagey fear of anyone finding out about my healthcare issues. Pretending a big part of my life doesn’t exist only makes me feel insane, and ashamed, as if I have done something wrong that I need to hide. I needed people to know what was really going on in my life because the pressure of trying to pretend to be normal was more exhausting than being sick. I needed my coworkers and friends to adjust their expectations of me. I needed them to know what I was up against so that they might understand when I said no. Putting my reality on Facebook was a way to train myself and others to deal with my new normal.

For that reason I have decided to be “out” despite the consequences, but I have to remember that I am able to be vocal about a few conditions in my life due to social privilege. One: I’m a writer, so if someone does discriminate against me on the basis of a health issue, I can put it up on the Internet in a reasonably coherent narrative. Two: I’m an activist, so I would know how to make a stink about it. Three: I’m white, so I have the social privilege to be listened to and believed. Four: I’m a tenured professor with a decent income, so I have the flexibility and time to write, the ability to have a flexible schedule that works around my illness, the support of colleagues, and the ability to be relatively safe from health-related discrimination at work.

•••

Or did I just want sympathy? I admit, at my weakest moments, that I did want that. But I also wanted to benefit other people with these conditions, which is a major motivation for people who post information about illnesses on social media. A recent study found that 94% of patients were willing to share their social data to help patients like them, even if there were privacy risks involved. Hence, the link sharing. And another survey found that 33% of adults use social media to find out about medical conditions and “to track and share symptoms.” For that function, I would sometimes post questions or comments to a series of Facebook and blog comment boards where patients could crowdsource information about new treatments, tests, medications, research, and side effects.

At base, I wanted my friends to understand me, including this new little wrinkle in my life. I wanted to be out as a person with Rheumatoid Disease because being quiet about it added shame and loneliness to a host of other problems, mainly the pain.

It’s hard to know exactly what I want in response. Sympathy helps a little, but it almost directly transforms into my friends’ agony and discomfort, and I don’t want that. Instead, like sharing haircuts or publications or travails about broken cars, I just want them to know and to have known, so that they can form an accurate and honest picture about me and who I really am. That’s intimacy, I suppose, and it seems to break down the wall that anxious sympathy erects.

And it’s true: I do have chronic pain. But I can name your imaginary band in two seconds, and I have a thousand books you should read, and I’ll send you a link to a great news article, and I think your dog is really cute. And I do have a lot more going on than lying on the couch. It’s just that right now … I’m lying on the couch.

•••

SONYA HUBER is the author of two books of creative nonfiction, Opa Nobody (2008) and Cover Me: A Health Insurance Memoir (2010), and a textbook, The Backwards Research Guide for Writers (2011). She teaches at Fairfield University and in Fairfield’s Low-Residency MFA Program.

 

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A Year of Dreams

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By Jody Mace See more at I Draw My Dreams on Facebook

By Jody Mace

Once I was involved in a political revolt. The situation leading up to the revolt was horrifying. I’ll just mention the worst of the atrocities. The dictator was sawing people in half at the waist. Led by a wise, bald man, we succeeded in overthrowing the autocracy. My personal heroism was as follows: I rescued a baby from a river, and after we restored a peaceful democracy I contacted a dentist, because many children had lost their retainers during the struggle for freedom.

This was a dream.

The only reason I can describe this dream, three years after it occurred, is because for one year I drew every one of my dreams in cartoon format. I’ve been asked why I did this, and I’m not sure why I started, but I continued because when I shared the first picture on Facebook, it got lots of likes and my friends said it was funny, and I will do almost anything for a laugh. So I created a Facebook page.

It turns out that I had very few dreams in which I was a hero. In fact, the dreams exposed the worst of myself. I did things that I wouldn’t do in real life but might think about. I cheated in sports and I called small children “bitches” (and then lied about it: “Tell their parents I called them ‘witches.’”) I went ape-shit on a college professor who said I wasn’t listening, throwing desks around the room in an uncontrollable rage.

In my dreams I examined what I would do if presented with situations I was unlikely to face in real life. I learned that if I were a soldier, I would avoid injury by finding hiding spots whenever the shooting started. Also, after a rampaging hippo at the zoo was shot and killed, I looted its cage and stole its toiletries. (“This shampoo looks good!”)

Everyone knows this about dreams: they’re fascinating for the dreamer to talk about but boring as hell for the people who have to listen. Try telling someone your dream from last night and watch for the exact point when the listener’s eyes glaze over. It won’t take long.

But that’s not because dreams are boring. It’s because our storytelling is boring. We don’t know where to start the story and we sure don’t know where to end it. The interesting parts are buried in mundane detail. If I were to describe the political revolt dream but started at the beginning of the dream, where a tour group was packing into a bus and the driver said something a little weird and I looked out the window and saw someone selling hats, nobody would be listening by the time I got to where the dictator was sawing people in half, and that’s when it started getting interesting.

If you were telling someone a story about a close call on the freeway in the afternoon you wouldn’t start out by describing brushing your teeth in the morning. You probably wouldn’t include what kind of shoes you were wearing. Just because something happened doesn’t make it a part of the story.

Because I was drawing the dreams, I was forced to boil each dream down to its essential elements, maybe five or six frames. It also helped that I can’t draw. So everything that happened had to be depicted in the simplest manner possible, which made it impossible to include extraneous details. The cartoon me had maybe three distinct facial expressions during the course of the year, but I learned to draw those three facial expressions convincingly. My “angry” expression was particularly iconic.

My poor drawing skills did occasionally call for some explanation, so there are a few notes here and there, like “Third arm is an accident,” “Not really this tall,” “This is not a penis,” etc.

The exercise of identifying the interesting elements of a story, and figuring out where a story begins and ends helped me in my other writing as well. I became more ruthless, slashing words, sentences, paragraphs. I think that drawing badly made me a better writer.

Drawing my dreams also made me work harder at the visual aspect of storytelling. Sometimes the dream could be told with hardly any words, just pictures. In one dream I had read a book on caring for chickens and it said that it was good for chicks’ social skills to spend some time every day with a rooster. So the picture consisted of several frames of little chickens climbing all over a rooster, and finally a close-up of the rooster with a pissed off look on his face and the words, “The rooster is not amused.”

And maybe being creative in a medium for which you have no skill or talent helps your creativity as a whole, because you can’t rely on any skill you might have developed. I don’t know the “rules” of drawing the way I know the “rules” of writing. If there’s a grammar to illustration I don’t know what it is. So I had no filter, and it felt good to create with no filter.

Sometimes I drew other people’s dreams as well. They’d tell me the long, boring version of the dream, and I’d boil it down to the essentials. Several times I drew my husband’s dreams. They were interesting to me because of what they said about our relationship. Like this one: We were climbing around on a cliff. We got to a dangerous part and Stan said, “We should stop,” but I said, “No! Let’s go!” Then I fell off the cliff into a body of water. Stan had to jump into the water to rescue me, risking his own life, but I was dead. Only I wasn’t dead! I jumped up and said, “That was fun!” What this dream says about our relationship is that I’m the fun one.

I also drew my friend Christie’s dream in which she and Stan were driving a truck through the mountains, hauling several refrigerators wrapped in towels. The interesting part of the dream is that Christie and Stan were flirting with each other. Later Christie claimed that I misinterpreted her dream and that they were not flirting, but when you ask someone to draw your dream, the artist gets to make the call.

My favorite dream I drew was one of Stan’s. It’s also probably the most offensive. In this dream we were browsing a catalogue of organic meat and we had this conversation.

Me: “I think I’ll get a midget.”

Stan: “What? Do you have any idea how big a midget is?”

Me: “I’ll cut it up and put it in the freezer.”

Stan: “I’m not eating some tough old midget!”

What I like about this dream is that on the surface it appears that he’s the virtuous one, rejecting the notion of cannibalism. But really his objections focus on the space the midget will take up and the quality of the meat. (Also, I know we don’t use the word “midget” anymore, but this wasn’t my dream.)

During the year I drew my dreams, I found that I remembered more of them, probably because the first thing I did each morning was recall them so that I could draw them. I also kept a notebook by my bed so if I woke up in the middle of the night I could write down a word or phrase to help me remember the dream I had before I woke. Sometimes the scribbled notes made me a little sad, like when I read “monster on house” but couldn’t remember the dream.

Reading notes about these lost dreams made me appreciate even more the staggering creativity that goes into dreaming. During the day, sometimes I stare at a blank Word document wondering if I’ll ever get another idea, and I hit “save” after writing just a couple sentences, afraid of losing even one word. But at nighttime ideas flow so freely. I tell stories, make jokes, invent things, and paint pictures with absolutely no effort at all, and then they’re simply released, like they’re nothing. If I don’t catch them as soon as I wake, they’re gone forever.

I rarely draw my dreams anymore, but I still look forward to sleeping every night and not just because I’m tired. Every night I anticipate the places my brain will take me, the surprising connections it will make, the unlikely storylines and the unselfconscious confessions. Every night I hope that when I wake, before I fully surrender to the morning, that I can grab a thread from a dream, give it a gentle tug, and bring that lovely diaphanous memory with me into the world of solid things.

•••

JODY MACE is a freelance writer living in North Carolina. Her essays have appeared in O Magazine, Brain, Child, The Washington Post, and many other publications, as well as several anthologies. Her website is jodymace.com. She publishes the website Charlotte on the Cheap in Charlotte, North Carolina.

The Family Versus the Grief-Glommers

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By Beth Hannon Fuller www.studiofuller.com

By Jennifer Niesslein

This is my sister Erin: As a child, she befriended the kids who were the outcasts so that they’d have at least one friend. In high school, we heard of a house fire; I donated some cast-off clothing, but Erin gathered up things that were still in rotation in her wardrobe. As an adult, she kept her door unlocked in case any of her friends dropped by and needed her. In the past couple of years, she has played host to a friend whose marriage needed some space, another friend going through detox, and another who was turned away from the psych ward although she was clearly in need some of mental health services. She stayed at Erin’s home, manic and wild, until her parents came to pick her up the next day.

Erin and I were born twenty-three months apart, summer babies, the children of school teachers. I’m older—I’m the oldest of the four of us sisters—but we each affected who the other became. As an adult, I’m expansive and generous and open to vulnerability; Erin taught me that. When I’m around her, though, I revert back to the same counter-balance that I’ve been all our lives: protective, suspicious of people who might take advantage of her giving nature, willing to fight her battles. I had a reputation, once, of someone not to fuck with, someone slightly crazy, aloof and unpredictable. I used to like that: it kept my sisters safe.

•••

Krissy, the third of us, called me. “Jeff died,” she said.

She’d called Erin earlier. Erin was gulping against her tears, more upset than Krissy had ever heard her. Erin’s husband, Jeff, had stopped breathing. Jill, our youngest sister, was on her way to Erin’s house where paramedics were working on him. In the next hour, there was confusion on Krissy’s and my part whether Jeff was actually dead. Maybe Erin meant that he died … but then someone had revived him!

She called Mom at work. “I think Jeff died,” she said.

“Krissy,” Mom said. “Did he die or not?”

“I don’t know.”

We were hopeful and inadvertently passed along that small hope to Mom, too, but no. They tried to save him. They didn’t.

(This is the part where I’m not going to write about Jeff, my handsome brother-in-law whom I’ve known since I was fourteen, the guy with whom I’ve laughed and bickered and grieved. This is the part where I’m going to keep up my denial that we’ve lost him. This is the part where my denial allows me to stay strong.)

The next day, Krissy drove up from Charlotte and picked me up in Charlottesville before continuing on. We stopped at a gas station for her to fuel up the car and for me to buy beer because I would need something to numb me. We’d been slap-happy on the drive up, too many hours in the car, and I stepped away to smoke a cigarette. The November sky in late afternoon was brilliant, cirrus clouds lit up pinky-orange by the setting sun. I don’t know why the sky is always important after a death, but it is. I can remember every sky after a death. When I came back to the car, Krissy was sobbing.

•••

We know how to get shit done.

Krissy and I got there too late to help make arrangements at the funeral home with Erin and their son Brit, but Mom and Andrew, Erin’s and Jeff’s friend, went; our Aunt Kathy met them up there. I was charged with writing Jeff’s obituary with heavy input from Erin and Brit. Jill took on making a playlist of songs to be played at the service. Krissy created a slide show that showed Jeff through the years, a slide show to which my eyes would wander the entire time at the funeral home.

Secretly, I had another mission: to determine who was a person there to surround Erin and Brit with support and love and who was a just a grief glommer.

The muscles of suspicion came back easily. After all, Erin was at the most vulnerable I’d ever seen her, lounging on the couch where Jeff slept, her big hazel eyes wet, veering wildly between intense grief and moments of okay. It was a testament to how open and welcoming Erin and Jeff were that so many people felt so close to them. Now, I eyed each one carefully.

In the aftermath of this tragedy—and this was a tragedy, Jeff only forty-two—our girl gang found the gamut. People are kind; people are misguided; people are completely inappropriate.

The first group was obvious. We found support in Erin and Jeff’s friends and our extended family, as well as in our own friends: food was brought, pictures were enlarged and framed, funeral deposits were made, alcohol was delivered.

I looked at the second group with some distance: the grief groupies. “I’m there for you,” although neither Erin for Jeff knew them, only knew of them. “If you need anything, call me—I’m not far away.” Yes, I thought at the time: Erin is going to call on near strangers to talk or maybe ask for help with the mortgage payment. Later, I could be more generous. I could see that these people were looking for a way to be important, looking for a way to make a difference. They were clumsy and maybe motivated by a hope that this was their chance to make a big impact on somebody’s world, but their impulses were benevolent. (Later still, some of these people would seem vaguely creepy to me, giving not only Erin but the rest of us too much personal attention.)

The last group, though, I still have nothing but disdain for. The grief looky-loos. They friend us on Facebook in the day or two Jeff’s death after not contacting us for twenty-some years without so much as an “I’m sorry for your loss,” and I have no idea why. You want to see what a family looks like when someone dies young? You want to see the face of raw mourning? You want to lick the salt of our tears? You want to see what Thanksgiving’s like this year? You want to hold my shuddering body as the baby-faced Army men fold a flag and present it to my sister? It’s not on Facebook. It’s here. Look close. You can call it schadenfreude, but it can happen to you.

•••

There was another category, though, and I’ll call her Liz. Liz was the friend who Erin and Jeff took in when she was turned away from the psychiatric ward. She claims to be bi-polar, but I suspect she’s schizophrenic; she abuses her medication so her condition isn’t controlled. I have loads of empathy for her in normal circumstances. She absolutely cannot help that she’s been dealt this illness, as debilitating as invasive cancer. But these were not normal circumstances.

Erin gets a text from Liz. She’s on her way up, she writes. She’s going to stay with Erin—permanently, if Erin would like! Erin, obviously, can’t take care of anyone at this point. Krissy offers to text back from Erin’s phone, to take one more thing off Erin’s plate, and we confer on the wording. Erin has a full house, Krissy texts, but we’re looking forward to seeing her at the funeral. At the last minute, Krissy asks me if she can change “Hi Liz, this is Krissy” to “Hi Liz, this is Jenny,” and I agree because this is what this is what the oldest is, the spokesperson and executive branch of The Family, charged with approving and enforcing the laws.

This is the place where I come home as a grieving sister-in-law and leave as the most hated alumna of my high school.

We’re plagued with other people posing the question: what happened? They come in droves, over the phone, on Facebook, in person. That evening, Jill and I drive the five minutes back to the home she shares with Mom and her daughter, and Jill tells me that everyone—all the sisters—are getting worn down. “What the fuck are they thinking?” she asks. “It’s not like we owe them anything.”

That night, I post on Facebook, “I know this is a hard time for everyone, but it’s especially hard for Jeff’s family. Please, please stop asking us what happened. What we know is that Jeff took a nap and died in his sleep. It’s maddening for us not to have more answers, too.” I tag my sisters, and, like that, the questions stop.

I tell my friend Tracy about this later, and she tells me that she thinks that there’s some part of people that looks for reassurance that death can’t happen to them. I agree, I agree, I agree, but can’t these people talk amongst themselves?

•••

The next day, I’m doing the day shift at Erin’s house. Our mom, Uncle Jimmy, and Grandma came by, but Erin fell asleep. Eventually, everyone leaves but Erin, Brit, and me, and, in the quiet, dim room, I watch her sleep while I read (not really, but it gives my eyes something to do) in the armchair.

The front door flies open. It seems unnaturally loud in the hush of the house. “Hello!”

A woman in sunglasses and a long, embroidered coat sweeps in the foyer. I get up from the armchair, and when she takes off her sunglasses, I see that it’s Liz.

“Liz!” I whisper. “So good to see you! Erin’s sleeping.”

“Oh, okay,” she says.

Brit comes in the room from upstairs, and she moves purposefully toward him, throws her arms around him, and cries, clinging to him, as if seeking comfort. Brit and I make eye contact.

No.

She releases Brit, asks me a few questions. She plays with the dogs for a little while. Serendipitously, another friend of Erin’s comes by. In the same whisper, I explain that Erin is sleeping, something that doesn’t come easily to my sister now. Liz asks me if she can hang out for a while. Brit interjects that Erin just fell asleep. “I’ll tell her that you came by,” I say. “I’m sure she’ll appreciate it. We’ll see you on Saturday.”

The two leave together.

But Liz comes back later that day, not on the day of Jeff’s funeral. She surprises us, showing up during the changing of the guard, when I’m going back to Mom’s, and Krissy and Jill are on their way over to spend the night with Erin.

In that time, Liz goes to the basement where Erin sits when she needs time to herself. I hear later that Erin talks to Liz, telling her how everyone has been so supportive: her family, Frank, Andrew… Liz starts arguing that she’s never heard of Andrew.

Really, she’s arguing for her own primacy in Erin’s life, which she cannot see simply doesn’t exist, although it’s no one’s fault.

Then Liz starts in on Erin’s decision to have an open casket. Erin tells her that she’s not going to argue about it, but Liz continues her rant. It finally falls on Brit—a man, but a young man, one who just lost his father—to stop her. “My aunts aren’t even here,” he says. “You need to leave.”

•••

We drive to the funeral home mostly in silence. I’m in the backseat with Jill and my niece. At every turn, I slide on the leather seat against their hips. The last time I spent any time squished in the backseat with family, we were going from our grandfather’s viewing to get something to eat. Then, Jeff drove us in his big truck. Now, my niece’s dad is driving.

I stare out the window at this part of Virginia to which I haven’t been since I was a teenager. There’s the strip mall where my best friend served frozen yogurt. There’s where The Black-Eyed Pea used to be, back when it was a restaurant and not a band. “Here,” Jill says. “Mike, turn here.”

“Jill,” he says quietly. “This used to be my playground.”

A grand old house with a broad porch has been converted to the funeral home. We help carry in what will be displayed: Jeff’s bass guitar, photos of him, trophies. The home is quiet and the wide wooden boards of the floor creak as we enter.

The funeral director’s name is Chad. Chad! Like a guy you know who maybe was a lifeguard in his youth and likes to party. But this Chad is soft-spoken and radiates kindness. He leads Erin and Brit into the chapel, where they spend some time together, alone, the three of them, the two of them.

When the private family time is over, people start arriving. In droves. Chad tells us later that since Jeff’s death, the phone at the funeral home had been ringing near-constantly with people trying to make sure they had the right time and place and day.

•••

The Niesslein sisters switch into full-on support mode.

Our parents’ divorce was a messy one, and although it’s been twenty-five years, some learned instinct—a prayer to no one: please keep it pleasant—kicks in for me when the two sides of the families come together—until now, just for graduations, marriages, and the births of grandchildren.

They’ve almost always kept it civil and sometimes downright pleasant, and they rise to the occasion again. I stand with my Dixie cup of water, wishing it were something stronger (a joke I’ll make a million times over the course of the day) and listen to chitchat between the two sides. Our cousin and his wife are wrangling their six-month-old son, a blue-eyed beauty whose heart belongs to anyone with a necklace to fiddle with. Our grandmother from the other side of the family notices him. “Bring me the baby,” she says from a wingback chair. She’s a little Godfather­-like in her delivery, but this newest Niesslein brings both sides together in admiration of the little guy.

Family: check.

For the most part, Erin and Brit stay in the chapel, now crowded with people filling the pews, waiting in line to see Jeff’s body, wishing Erin and Brit their best. I look at Erin across the room, and I can’t even imagine how she’s still standing. I suppose that it’s a combination of denial and medication and the default mode of who she is: warm and loving.

As for the rest of us, we’re running around the place like the A.V. Club, asking Chad and his colleagues to turn off the music, turn up the mic, resume the music as people—Brit, Jeff’s friends, his musical buddies—give their tributes. People are spilling out of the rooms onto the porch, the driveway, the waiting room of the home’s office. Jeff and I graduated together, so his funeral is, in addition to being one of the most wrenching things we’ve ever gone through, an impromptu class reunion.

It’s crowded enough that we can quietly shun people who we know make Erin or Brit uncomfortable or who Jeff didn’t like. There is Liz, touching inside the coffin. There are a few other people who, when they look as if they might approach us, we busy ourselves, mostly by checking on one another. Occasionally, I sit down. I’m doing this when Jeff’s old bass teacher plays a lovely song as a tribute, and as I lean into the furniture, forgetting, I think, You know who’d like this? Jeff.

Like my other sisters, I usher Erin through the crowd to have a cigarette, take a break, abandon her smiling façade for a moment. I notice a crowd of our high school alumni gathered out front, talking and laughing. I can’t hold it against them—I’d done the same throughout the day. But looking at them, I realize that this is their final goodbye; they’d file Jeff away in their memories soon, a guy that they’d known and liked who died too soon. We were different. We—the people who loved and supported Erin and Brit—would be the Sherpas across their long chasm of grief, descending into it with them and climbing up, step by steep step.

•••

After the funeral, we head back to Mom’s and Jill’s house. Our extended family is already there, quietly providing a spread of food and drink. Erin and Brit had invited close friends and family to join us in the celebration of Jeff’s life, and soon the house is crowded.

I let down my guard and crack open a beer. I take off my boots and put on slippers. I hug—long, lingering hugs, inhaling nosefuls of scent—my husband and our son for whom I was so homesick the night before. I survey the group. This is the love and support that Erin and Brit deserve right now.

I use the bathroom off of Mom’s room, and when I come out, Grandma and our cousin Jordy are searching for Gram’s purse that she ferreted away somewhere deep in Mom’s closet. Jordy’s using his cell phone as a flashlight, and I’m clicking through the hangars when Jill bursts in.

“Liz is here,” she says.

I pause. Am I the person who’s going to bounce a deeply sick woman from the house? Yes, it turns out. Yes, I am.

In the living room, Liz is standing in bare feet, looking at the baby. “Liz,” I say. “Can I talk to you outside for a minute?”

Although the day had been warm, it’s freezing outside now, and I lead her to a place down the sidewalk, away from the people lingering with their cigarettes.

“I heard you weren’t very supportive of Erin last night,” I say. “I think you need to leave.”

“I respect that,” she says. She stares into my eyes for a long time without blinking. I’ve been drinking, but even I can see that she’s trying to intimidate me; we’re down to our most animal selves here. I stare back.

“I can’t believe after such a good friend I’ve been to Erin and Brit and Jeff that you’re asking me to leave—”

“I appreciate that, Liz.” No, I don’t—they’ve been good, amazing friends to her, but it hasn’t been, couldn’t be, completely reciprocal. “But that’s not my job here. My role is to make sure that they’re surrounded with love and support.”

She stares at me for another long time, and I don’t break her gaze. “Let’s go,” I say.

I head toward the front door as Grandma’s leaving. I make way for her and her walker. Liz, not seeing, tries to push past. I put my hand on her shoulder. “You need to wait. Our grandma’s leaving.” My tone is sharper than I intend, but maybe that comes with the territory of being a bouncer.

Eventually she locates the guy she came with, and they leave. I crack open another beer. The five of us—four sisters and our mom—find ourselves in the foyer sometime later, hugging each other in a circle, like a coven. Our cousin Mike snaps a picture, and that’s how I like to remember that night, each of us supported by the collective strength.

•••

It’s three weeks after Jeff’s death. I’ve been calling Erin every other day, Brit once in a while. Today, I’d gotten Erin’s voice mail, and she calls me back. She’s crying. “I just miss him so much,” she says. “It’s only been three weeks, and I have a lifetime of this.”

“Just an hour at a time, baby,” I say.

For the first time in my life, it hits me: I really can’t protect her. I can write this stupid, fucking, whiny essay in which I paint myself as some kind of hero, but it’s a distraction from what’s really going on. Jeff’s gone, and as much as I want to snatch the pain away from Erin and Brit, I can’t. I can steer away people who aren’t helpful, but I can’t alleviate this ache, this loss, one tiny bit. I don’t know what to do with this impotence.

When we were little, I’d ride my bike with my sisters, Erin in the banana seat in front of me, Krissy on the handlebars with her feet in the basket. There was a family down the street who kept a pack of dogs, half-crazy mutts, and when I saw the pack coming, I’d tell my sisters to get off the bike and get behind me. I’d walk the bike to our house, its shiny pink aluminum the shield between us and the Big, Terrible Thing.

I was wrong to say that we’re Sherpas. All of us will have to descend into that chasm of grief, alone, together, and climb out, alone, together. When the Big, Terrible Thing happens, it doesn’t matter that you’re the big sister. The shield is flimsy, and you are, despite your best hopes, simply a familiar body to cling to. You have to start believing that that is enough.

•••

JENNIFER NIESSLEIN is the founder and editor of Full Grown People. Her website is jenniferniesslein.com.