The Sunday Rumpus Essay: Lisa, Wolf, and the World

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Money matters big and small, yours and mine, fascinate and consume me, and so this summer a couple of Facebook posts from writer Lisa Carver caught my eye. In the first, she noted that frank talk about personal finances was taboo, and she invited readers to break down boundaries by revealing how much debt they had. In the long string of comments that followed, some people detailed their debts, some confessed to astronomical loads of it, and a few boasted of being debt free. In a subsequent post, Carver responded to someone in the last camp, a guy who had commented that debt was prison. Her main point: “Debt is not always ’cancer’ … it can be freedom to have the opportunity to ‘waste’ money on borrowing for a home for people like Wolf.”

Wolf is Carver’s 19-year-old son. He has Velo-Cardio-Facial Syndrome, a genetic condition resulting from a deletion in the 22nd chromosome that causes a host of developmental issues and medical problems. He’s had 17 surgeries. He has a feeding tube. He has difficulty seeing, hearing, balancing, and completing fine motor skill tasks like buttoning or unscrewing caps.

I’ve been a fan of Carver’s writing for years, and I interviewed her for The Rumpus last February. Through both her own work and our conversations I’ve gotten a sense of how hard she has worked to meet Wolf’s needs and help him live his best possible life. I’ve also gotten a picture of Wolf: He’s an animal lover, an almost comically gentle person, and an obsessive, expressionistic artist. He does volunteer work with the Seacoast Science Center, where he cleans tanks and feeds fish and takes a special interest in the angler, who the other fish pick on. He also gives his time at an animal shelter, where he helps feral kittens get used to people so they can be adopted. In the last couple years, he’s been going through his version of a teenage rebellion, resisting the many therapies and treatments he’s been subjected to since birth, for example, and wanting to experiment with eating even though it’s likely to complicate his health. Wanting, in short, to make the move from boy to man. He needs independence, but he will never be able to live entirely on his own.

“He would die,” Carver wrote on Facebook. “He would forget to eat and starve to death, or any number of darker things the school councilor had said happened to other disabled kids who the state puts up in apartments when they are out of school.” But in their search for options, Carver and Wolf had found a group home in Boston that seemed perfect to them. The place was built around a principle of respect for the residents. It allowed some independence while fostering community.

“I was excited about how everyone is so calm and gentle. I really like it a lot,” Wolf said when I asked him about it via an email to his mom.

After attending an information session about the home, Carver walked away believing that a down payment of $5000 would get Wolf settled there. This is a huge sum to a single mother of two who supports herself on writing and to a young man who can’t work at a wage-paying job, but Carver started plotting ways to raise the cash, most of them involving cultural events, artwork, and her and Wolf’s community of friends and fans.

Carver’s posts about money on Facebook began when she learned that she was going to need much more than 5K to get Wolf situated. It turns out that the residents don’t pay a fee to live in the home, they own a share of it, and they have to go through the bank to get a mortgage for their share.

“A bank will never give me a mortgage. I mean, not single and with the income I have,” Carver noted on Facebook. Even in the best case scenario, in which a bank agrees to give her a loan, she’d need a deposit at least three times as large as the one she was planning for.

Comments offering commiseration and suggestions poured in. Midway through the long thread, Carver wrote: “I was driving, and The Bangles came on the radio and I can’t stand the Bangles and I would be embarrassed if I were on one of them, but today I was thinking I wish I was a Bangles so then I’d have enough money to buy him the room, no mortgage at all.”

Me being me, simultaneously anxious, empathetic, and self-involved, I took this comment personally. I’d felt oddly punched in the gut the moment I computed that Wolf’s move looked to be yanked out from under him, but it was Carver’s plaintive dream about the Bangles that attacked me like a swarm of bees, that made me frantic about myself and the world and her.

Carver and I are the same age, and since my late teens, when I discovered her zine Rollerderby, I have from afar sucked at the neck of her big, weird energy, her great sentences, and her luminescent revelation of momentary truths. In the early years of my fandom, her propensity for out-of-control violence and mad sexcapades were also a big part of her appeal. But as my own concerns changed, I became most interested in the way she parented and paid the bills, coped with her past and made a way for herself in the world.

Wolf and Fam

She got pregnant when we were both 26, and I remember staring at a naked photo of her bulged-belly self in Rollerderby, amazed that she was taking on the task of nurturing a life, something that seemed important but impossible at that time. I had the same worry I did about actual friends who got pregnant in that period of my history—that I was going to lose her, and/or she was going to lose herself.

I was self-absorbed and naïve, obviously, and had no idea how both right and wrong I was about the wages of parenting.

By the time her memoir Drugs Are Nice came out in 2005, I had taken the plunge into parenthood myself and struggled through the first few years of it. Reading her book, I could barely breathe as she described Wolf’s infancy—the open-heart surgeries he endured, the special care he needed, the uncertainty about his long-term prognosis, where the possibilities ranged from grim to grimmer and hung on Carver’s ability to parent hypervigilantly while also bearing no relation to her efforts whatsoever. Doctors told her that Wolf was certain to have learning disabilities and likely to have early-onset mental illness, and that she needed to give him extra stimulation and lots of therapy to mitigate those outcomes even if she couldn’t prevent them.

Carver coped with all this while living in a filthy basement apartment with a substance-abusing and violent partner, Wolf’s father. But eventually she managed to get out, and in Drugs Are Nice she writes about entering the apartment one last time (with a police officer) to collect her belongings. Wolf’s paternal grandmother Mary was also there, apparently to protect her son’s interests. Wolf was half-dozing in a car seat, and Carver set him down by his grandmother so she could gather her things. As she describes how the door to her room had been padlocked and the police officer refused to help her gain entry, she writes: “Mary is ignoring Wolf, who would wake up and play if anyone took the time . . .”

Even at that moment of extreme stress, in a fight for her survival, she was thinking of how to optimize her child’s life. It’s an instinct that I recognized as such a painfully transparent and true mark of good parenting that it almost hurt to read, and it has haunted me since.

If I were in that boat, with a child who needed so much extra support, could I work that hard? Could I love that well? Could I be that persistent and demanding and flexible and upbeat? I doubt it. I would probably give up.

Not that I would abandon my child, or be unable to love them—I don’t mean that. But I’m afraid I’d quit fighting for them after the third or fourth obstacle was thrown in my path. I’d settle for what society was willing to allow for them—financially and imaginatively. How much easier to write a check than to face this in myself, or than to fight the larger battle for more generous social services for the most vulnerable among us, a mission that can feel so abstract, so easily worn down by the drumbeat of “budget, can’t afford it, budget, can’t afford it, budget, budget, budget, personal responsibility, budget, care for your own.”

So when I read Carver’s comment, I wished with all my heart that I was a Bangle, so I could give some money to Wolf and free Carver from the corruption of a desire born out of desperation. The way she lived as a weirdo, a warrior, an artist, a parent had served me so well over the years. If I were ever able to summon the strength to meet similar challenges to those she’s faced, if I had a hope in hell of not giving up at the third or fourth obstacle, it would be through her example. I couldn’t stand the thought of her having to compromise her integrity, maintained for so long and against so many odds.

But me? Being a Bangle isn’t really my style, and I’m into having a style, but I’m already compromised when it comes to doing what needs to be done to turn a buck. I’m comfortable with it, to be honest. I’d have a hard time quitting my job even if it would help the outcomes for my child, because I’d worry so much about the loss of a regular paycheck. So if that job were to repeatedly sing uncool songs I wasn’t crazy about? Smile when I didn’t feel like it? Maybe learn to blow-dry my hair? And get a big bank account? Sure. I could probably do that without making myself sick. I actually even emailed Lisa to tell her so. Don’t worry, I’m coming to your rescue in my imagination!

For a couple days, I deeply inhabited the fantasy of life as a Bangle. I tried to suss out the details of my life, to identify what kind of couch I’d be sitting on, what kind of light would be coming through the adjacent window, what view I’d glimpse outside when I lifted my gaze from the iPad on which I’d just read Lisa Carver’s status update about the situation with Wolf’s home. (Carver might despise the Bangles—part of the sacrifice I’d make by being one—but I doubt she’s memorized each of the members’ names firmly enough to block them on Facebook, so Bangle-me would still be privy to her missives there.) I visualized myself turning away from the sun-dappled vista after some long minutes and reaching into the nearby leather caddy for my checkbook. In my mind’s eye, I saw my manicured hand fluidly looping the numbers and signature on a pastel check. I heard the satisfying zip of it being torn from the book along its perforated edge.

How giant would the check be? I suppose that depends on how well the Bangles are doing these days. I’ve followed with lurid interest the collapse of the music industry—my finances have nothing to do with the music industry, but its demise feeds my anxiety like so much else. And here’s what someone with a lot of money anxiety does: Tries to be realistic about numbers even in fantasizing. Were the Bangles big enough pre-crash to have lots socked away? My entire knowledge of their oeuvre comes down to the ability to hum a few bars of “Walk Like an Egyptian.” I know that song still gets played regularly—it’s well-known enough to have been part of a joke in a kids’ Christmas show I attended a couple years ago. How much does that kind of cultural ubiquity pay out? Have Bangles’ songs been bought up for any commercials? Did the band members invest well? Do they play at state fairs? Who did they marry? Had they seen the writing on the music-industry wall, gotten tired of the tour bus, and gone for someone in finance? Had they made out well in the divorce? How did they spawn? Did their kids have any expensive needs?

Well, of course they did—all kids can be seen to, especially as the rules of our society become increasingly winner-take-all. Lessons, camp, college—I know how much those cost. Residents of Illinois, where l live, can expect to pay $30,000 a year to attend the state university. It’s about the same in California, where as a Bangle I might reside. I checked. What figure could Bangle-me write on the check that would hit the sweet spot of hurting just enough to suffuse me with virtue without actually causing any lasting discomfort to me or my blood? Could it possibly be for the whole $100,000 needed? What about $20,000, a twenty-percent deposit which should make the loan easier to get, especially if I offered to co-sign? It’d feel magnificent to write a check for even $2,000—the amount a richish lady might spend on a weekend at a spa or a year of keeping her hair highlighted just-so, but a vast sum to hand over voluntarily to an oddball writer whose fans are mostly poor and weird, too. Ahhhhhh, yes. Even $2,000 would feel so very, very good.

But I’m not a Bangle. Nor am I an artist, nor a writer who survives off ever-dwindling advances and lower and lower freelance rates and auctions of her ephemera on eBay. For the better part of two decades I have worked in a cubicle at an occasionally interesting editorial job that pays a decent wage and provides my family with benefits. Although the job can chafe—the regimentation and the limitation; I’m a writer at heart, too, you know!—it is not a humiliation. It’s a cross am grateful to bear, because I see first-hand that jobs like mine are becoming rare, and I have money anxiety and no secret stores of potential cash and two children that I want to provide a middle-class life for. And I’m capable of sitting in a cube and doing the work assigned to me without compromising my children, or causing myself spiritual harm, or getting myself fired. I feel lucky in this, actually, free-spirited though I also yearn to be.

“What does middle-class mean?” a friend asked me this summer, knowing that this is something I consciously aspire to, that it’s the boulder I have my shoulder to, calves straining as I push up the hill. Bent like this, I sneak glances when I pause for a breath—in one direction I glimpse the wide, green world; in the other I see a mountain of garbage with families scrambling over it trying to make a living from others’ waste.

“It means I can set money aside for the future and pay for enriching experiences for the kids,” I answered my friend. I didn’t mention anything about the new shoes and dinners out I expect for myself, or the ability to stockpile resources to deal with emergencies that might arise for our family, but I meant that, too. I want stuff, and shit happens. Both those things have become obvious as I’ve aged. Since hearing about Carver’s and Wolf’s situation, I’ve calculated whether I could manage to get a mortgage for my child if that was what it took to get him or her situated in life, doing the math on our home equity and retirement accounts and synthesizing those numbers with the economic news I keep abreast of—interest rates are down but mortgages are harder to get. There’d be some kind of disability or social security to help with the monthly expenses, I think. I don’t know how much, but I can factor that in. Yeah, we could do it. At a cost to some comfort now and more in old age, but we could.

But despite my decent salary and my husband’s new job as a teacher—taken up midlife after the photography industry that had employed him imploded—things have been tight since we had our second kid the same year the economy tanked. We were about to embark on a vacation when I saw Carver’s post—a road trip to see family and then go to the beach—and I knew we didn’t quite have the cash on hand to cover it, that’d we would spend more than we had, and eat into our always-dwindling savings or get into some debt. That thought stressed me out, fed into the worry I was already stewing in on Carver and Wolf’s behalf. I slept restlessly.

The next day I bought Wolf’s book, Wolf the Artist: From Apocalypse Back, on eBay and Paypaled Carver $20 towards her Wolf.Tree of Lifefund for his move. Making the clicks, I felt both the impervious entitlement and shame that marks so much of my spending, whether I’m buying or giving or some combination of the two. Like everyone I know, I get requests for money every day from Kickstarter campaigns, human rights organizations, political causes, and friends supporting friends who are in heartbreaking pinches. I give erratically, nowhere near the ten percent of my income recommended by religious groups, seldom more than $100 at a time. I often tend to give more generously when I’m most broke, perhaps because I realize how generally fortunate I actually am, and it’s easier in those moments to imagine crossing the line to true need than it is to imagine saving for the future or getting to travel.

But that wasn’t the effect on the eve of this summer’s vacation. Twenty dollars seemed a stingy amount to give for something that was tangible and important to me, but that is the amount I typed in. It’s hard to fully unravel these sorts of decisions. Maybe I just wanted more to spend on my trip. Maybe I was so angry at the world for making Carver’s and Wolf’s life extra difficult, as well as so worried about having to live in that world, that it made me withholding. Maybe I just felt puny in the face of need.

Carver has been taking care of Wolf since he was born, and it’s never been easy. But in terms of resources, things have gotten harder in the last five years. The income she makes as a writer is down more than half from her peak, and so is Medicaid. In New Hampshire, where Carver lives, funding for chronically ill people is seen as a soft item. Among other things, Medicaid will no longer pay for Wolf’s nausea medicine, a loss he feels acutely.

“It really helps me with my sickness,” he emailed. “It’s about a thousand dollars a month, what the doctors said I need, so Medicaid won’t give it to me. They only let me have a few drops a month, and it really doesn’t help. I throw up all the time, even at my jobs, and I have to lie down all the time. My mom always tries to help me and get the nausea medicine I need and help me out with stuff and she goes to meetings and talks on the phone and she gets in a lot of fights. She tries to be happy, but she gets kind of cranky sometimes. Because of how her life is, I feel bad. I wish there was something I could do. I feel bad for her getting in fights all the time. Sometimes she wins, like when I got Easter Seals and job training and she at least got me a few tiny bottles of nausea medicine. And now with the group home, I feel like I’m going into a nice life.”

I asked Carver for specifics about the cutbacks. “New Hampshire is the worst,” she said, in terms of Medicaid and other state programs. “I feel like they want him dead, because in a cost-benefit analysis, that’s the best outcome for the state budget. Not that they WANT him suffering more and more and then expiring, but that they accept that as an unfortunate part of meeting the budget.”

It’s not fair, I think. It’s not fair it’s not fair it’s not fair. Should I give $200 because of the unfairness? Should I give $500 I don’t quite have but also sort of do because I love what Carver stands for, and to the extent that I can without us having ever met, I love her, and through that and my love for my own son, I love Wolf? Because: love?

But there’s also anger. Their predicament has focused all my free floating rage about tax codes that favor the wealthy; wages that have stagnated or decreased for all but the top earners; tea party propaganda about the morality of austerity and unaffordability of the Affordable Care Act; Republican intractability; the American pharmaceutical industry; and trends that devalue art and literature and music while enriching technology and telecommunications corporations. I look at Wolf’s life and my mind spins out all over the place, and in the past few weeks my fantasy has switched from me being a Bangle to being a hypothetical- argument Don Quixote, swinging fiercely at the trollish, right-wing clatter that shows up on Salon.com comment boards and that I imagine hiding behind every bush waiting to choke the next vulnerable child that walks by. Or, actually, maybe I’m more like Claire Danes’s Carrie Mathison in Homeland, crazy and too impassioned but totally right.

I’m kidding myself about my ability to be a Bangle, to smile and sing genially at the CEO’s birthday party or whatever. And I’m definitely living in fantasyland when I imagine that I’d ever have this choice. I realize that, of course, but I suspect the daydream of grandly manifesting my own good intentions has mitigated the actions I actually do take, which is not so different those who blanket themselves in a fantasy of incipient wealth so they can sanctimoniously lecture those who need society’s help.

I know there are people out there who would hear about Carver and her son and say: She should get a real job. She shouldn’t expect the government to take care of her or her adult, disabled son. Or just: She’s one anecdotal example who proves nothing. We can’t afford to help everyone.

And I know there are people on both sides of the political spectrum who say writers and musicians and artists have to adapt to the new economy. That it’s possible for creative people to support themselves if they’re willing to try things a new way.

I keep thinking of the TED talk given by punk-cabaret musician Amanda Palmer. She was much in the news last year for having funded a new album by raising over a million dollars on Kickstarter. She—clearly—inspires great love from fans, but she gained a lot of critics, too, when she went on tour behind that album and recruited musicians to open for and play with her for payment only in limelight, booze, merch, and hugs. She’d been making these kinds of exchanges for years, but it felt different to many people now that she had pulled in such big money, and when many artists were finding it increasingly hard to make ends meet.

In her talk, Palmer explains the ways she has wrestled with such accusations, worrying that what she was doing was unjoblike or unjust. She describes, for example, a time when she asked fans for lodging and she and her band ended up hosted by a very poor family of immigrants who gave up their beds for the musicians, and fed them. “Is this fair?” she asked herself. When the mother of the house tells Palmer how much her music has meant to her daughter, Palmer concludes that yes, it is fair. She says that artists need to be able to ask for what they need and make the human connection that comes from receiving it from others, who have needs that the artists are filling, too. She implies that too few musicians are willing to be that open.

It’s an inspiring talk, and Palmer radiates something beautiful as she gives it. She’s a shining example of the way an informal economy can function and the way money can be a flow of love. But looking to Palmer—who sits atop of the Kickstarter-economy heap—as a model for solving the problems of artists earning in the internet age is distorting. It reminds me of the way Americans tend to identify with the rich, arguing and voting against their own economic interests because they find it so easy to imagine themselves reaching an exalted status, not seeing that systematic changes to our society have actually narrowed the chances for most of us to climb up even a couple rungs.

I mean, Lisa Carver is in many ways similar to Amanda Palmer, and she’s already doing what Palmer suggests artists should: she has personal connections with her fans, she shares her personal challenges with them on social media, she gracefully embraces help from the community that springs up to offer it, quickly replying when when anyone inquires that they can Paypal donations to Wolf by using her email address, [email protected], and reminding them to note the extra c in the middle. This summer two festivals were organized to help raise money for Wolf to move out on his own, with performers donating their talents, and other friends and fans donating items to auction, and money being asked for and received. Carver’s also used her cultural capital to create a market for Wolf’s artwork.

“I work really hard on my paintings and then I put them up on eBay and I get a LOT of money for them sometimes,” Wolf told me via his mom. “People are really nice. People from all over the world buy my paintings! I really like that. I thank them for giving me a lot of money for my group home. I put half the money into the down payment for the group home. The other half I’m saving for an iPad so I’ll have it in my room at the group home. Ever since I saw the group home, I’ve been doing a LOT of paintings and drawings and I’m having a lot of fun, because I have something to look forward to.”

Wolf's Diary

How much money is a lot, I wanted to know. “I don’t know how much I make,” he answered via email. “I am interested in money, I just don’t know amounts. I think I might get twenty dollars for some paintings, or a hundred dollars for some.”

“I’m too overwhelmed to keep thinking about this right now. I’m going to bed. I finally told Wolf that it’s going to be harder than we thought, but we’ll do it somehow,” Carver finally commented on her original Facebook post, where others kept chiming in through the night. It takes a lot of $20 donations and $50 paintings and $500 festival profits to make a dent in a twenty-thousand dollar down-payment, but I’m reasonably confident that Wolf will make it into the group home.

Lisa Carver is an exception of spirit and vision and energy and will, and people—even if not enough of them to immediately crowd-source what’s needed—see that.

But what about the other kids who are similar to Wolf in their needs but who are not like him, who are like themselves? Who might be denied the chance to find out who they are if their parents can’t climb over that hundredth obstacle? What about the musicians who can’t make a living anymore, let alone support a family or take care of themselves if they get sick? What about the people I used to work with whose jobs have gone to India and Estonia, where portions of my job or paycheck might soon go, too? What about the 40 percent of the Indian population who live below the international poverty line, making less than $1.25 a day and sleeping adjacent to open sewers? What about the world? My $20 or $200 or the rush I’d get from being a Bangle and writing a check for $2,000 or $20,000—that’s not the answer. I’m not sure what is. But there has to be a way for things to get better rather than worse.

While my family was on vacation, we got an unexpected windfall—small by some standards, huge by others. Oh, what the hell. I’ll just tell you how much: a gift of $2,000 dollars. It was such a relief in this tight summer. And it went like water into parched earth, some soaked up usefully, some of it running off to the cement. Twenty dollars here, fifty dollars there. I’d forgotten my sun hat, and so I bought another one, paying more for the style that pleased me, and then it rained during the rest of our trip. What can grow? What can we help make grow? The thirstier the ground, the harder it is. And rain doesn’t always fall where it’s most needed.

But there is Wolf Carver, making his paintings. There is Lisa Carver, helping him show them to the world. I’m so anxious for them. We need better systems, and personal inspiration can go only so far. But these two give me hope.


Zoe Zolbrod is the author of the award-winning memoir The Telling and the novel Currency. Her essays have appeared in places such as Salon, The Guardian, the Manifest Station, and The Rumpus, where she served as the Sunday co-editor. More from this author →