Reality Chick

This week I’m quoted in Match.com’s Happen magazine on how I got over my committment-phobia.

“I am so counter-dependent, I am always like the elusive guy in a relationship, but I’m a woman,” says Christina Gombar. “I was the ultimate ‘heart of stone’ girl. I wasn’t promiscuous but I was always the remote, cold fish emotionally, with guys sending up their hearts on platters to me. I never understood it. But I think because I was a little tough, I attracted the opposite, emotionally needy guys.” It took a very persistent and communicative man to break down what Gombar’s self-preserving distancing strategies. “I’m ‘recovered’ but only because of my husband,” Gombar says.

Read the whole article here:

http://www.match.com/magazine/article0.aspx?articleid=11558

Therese Borchard struggled with manic depression during her college years, but went on to earn a master’s degree and establish a stellar career in journalism and book publishing.  But the hormonal shifts of motherhood, a geographic move, as well as the switch from sociable on-site office work to an isolated, home-bound freelance life, created a perfect storm of factors for mental illness to burgeon once more.

After a harrowing, months-long stay in an institution, she returned to home and children and went on to become the author of the hit blog, Beyond Blue on Belief.net, where she shares her continuing struggles with anxiety and manic depression, from her own particular Catholic perspective. This year she published her memoir, Beyond Blue: Surviving Depression and Anxiety and Making the Most of Bad Genes, along with The Pocket Therapist: An Emotional Survival Guide, which offers concise techniques to help anyone living with a chronic illness get through the demands of a day.

I interviewed her for Working with Chronic Illness on how she manages to work, raise a family and keep her manic depression under control.

 CG: What are your biggest challenges in navigating your health condition, your job and your home life? 

TB: I suppose my biggest challenge is managing my health in a way that I can concentrate enough to meet my work deadlines. Fortunately, my schedule is flexible enough that I can write extra blog posts on a day where I’m feeling good, and bank them for the days my head isn’t good for anything. But I’m always nervous to commit to a meeting in person, because I don’t know how I will be feeling that day. So I fake it as best I can. I’ve had to do that a lot lately with the publicity efforts for my books: I’ve had to plaster a smile on my face and spit out nice sound bites all the while I am thinking that I wish I were dead.

 What is a typical work day like? 

I drop off the kids at school at 8, and usually work out for an hour. From 10 to 2 are my golden hours, where I try to get the posts written, or follow up on a story I was supposed to write for other magazines and newspapers I write for. If it’s sunny outside, I will take 20 minutes and eat outside, because it’s crucial that I get that sunshine and fresh air. By 2:30 I usually need to pick up the kids, start homework, get organized for lacrosse practice, etc. My work window is fairly small, so I try to get as much done as possible in the hours they are at school. And two days usually go to doctors’ appointments, blood work, and therapy.

What, if any accommodations do you/your employers make for yourself? (I know you have to stop yourself from overwork sometimes!)  

My editor, Holly, is very understanding that things like Twitter tutorials and SEO (search engine optimization) training can sometimes activate my inner energizer bunny that I want at rest. It’s difficult, especially in the blogosphere, not to make my writing my life and tweet all hours of the day. I need boundaries between work and home life. I try my best to shut off my computer when I’m not working, and to leave it closed during the weekend. I find that when I ignore my sensitivity to online chatter, that I will have to invest a lot of time into getting myself well again … so I try to be as prudent as possible. 

 Your blog is about coping with mental illness, so your employers knew of your condition. But your illness is “invisible” — you look super healthy, you run, etc. Did they really know what it entails, how hard it is, that it could ever become overwhelming?    

 That’s a good question. I think Holly is as understanding and empathetic as any editor could be. And the manager editor, Michael Kress, and the editor-in-chief, Ju-Don Roberts, too. They want me to publish the real stuff – like the video where I sobbed and said depression wasn’t always pretty – as that is what best speaks to people in the throes of depression. So if I can’t stay as up on current events or celebrity gossip as some of the other bloggers, they are fine with that. Sometimes I need to write pieces a few weeks in advance, to give myself a little time of rest in a depressive cycle. That’s not a great formula for search engine optimization—as you want to write on all the hottest search terms—but if the content is authentic and resonates with folks, that’s what is important.

 You started out with great qualifications, a masters degree, a magazine career and book publishing. After you had your kids and a breakdown (no connection there!) — you had to rebuild. Can you detail those challenges a bit? How did you negotiate with your prospective employer?

 All I can say is I had to take it in very small steps. I was unable to produce anything for about six months. Every time I sat down to write, it was awful. I would just cry and cry.

 So I relied on my great aunt’s advice to just take it very slow, one step at a time. I first signed up to be a writing tutor at the Naval Academy, because I wanted to see if I could concentrate for three hours a week. Getting through some of those first papers was more challenging than getting my masters degree. But, at the end of that, I had the confidence to ask an editor if I could have back my assignment of bi-weekly columns. Twice a week I had to come up with something coherent on paper. That was quite a challenge, too! But together, the tutoring and bi-weekly column, gave me the self-assurance to pursue “Beyond Blue,” the blog, and then later, “Beyond Blue,” the book.

 Negotiating is VERY hard, especially when you are feeling so unsure of yourself. What I did was to speak with anyone I could who might have information that would help me negotiate. I then pretended I was them … my friends who had just gone through this and came out with favorable working agreements. I told myself that it wasn’t me who would be doing the talking, but my friend, and that somehow made it easier.

 http://workingwithchronicillness.com/2010/06/not-just-surviving-but-thriving-while-living-with-depression/

http://blog.beliefnet.com/beyondblue/2010/06/working-with-chronic-illness.html

This month I’m quoted in Elle.com on how I’ve managed to stay married so long:

“Many friends who witness my husband and me sparring say, ‘I don’t think you are going to make it.’ But in fact, our constant conflicts have kept us together,” explains Christina Gombar, 50, a writer. “Nothing is sat on, it all comes out right away, and it’s gone.” Fighting beats fuming quietly and is a great way to air problems. It’s also an excellent way to take a stand, empathically defend an important position, and provide essential information about yourself.  Gombar and her husband can safely be blunt with each other. “We don’t take offense because it’s the norm for us,” she says. “All of our friends who worried about our disagreements are divorced!”

 Gombar sees her husband, Peter, as sort of a hedonist, with a passion for good scotch, fine cigars, and fancy steak houses. “He loves to spend money,” says Gombar, who tends to penny-pinch. Although she tried to rein him in early on in their marriage, she realized over time that she couldn’t change his fundamental nature. “Live and let live,” says Gombar, who has discovered that her frugality and his spendthrift ways seem to balance out. She recognizes that spending money, as long as it doesn’t bankrupt them, is his way of feeling safe and secure.

          In fact, limiting what someone spends can create a deprivation mentality, according to Steven Stosny, PhD … “Knowing that you can’t have something creates an unconscious longing for it,” he says.

http://www.elle.com/Life-Love/Sex-Relationships/How-to-Make-Your-Marriage-Merrier

People with chronic health issues are often also chronically financially challenged. It’s no secret that a catastrophic health event is the number one reason for bankruptcy in the U.S. It’s not just the bills, it’s the lack of earnings.

          Many people with CI’s (that’s shorthand for chronic illnesses) can’t work as much as they’d like to, or at all. If they fall down the rabbit hole of the disability system, they find themselves in an underground maze of dead-end tunnels when they try to get back to work — if, and how much they can earn without losing their health coverage and/or disability income.

The system right now makes it very hard to get off disability once you’re on it, or to even try to work while  trying to get your health back. The Social Security Administration has a Ticket to Work Program designed to deal with this, and  which President Obama’s said he plans to expand. But the stance of  private insurance companies — which offer much more comprehensive coverage — towards people disabled by chronic illnesses, especially invisible, cyclical, and variable ones, is a terribly adversarial one.

           I’d like to change that. I’d like to find a job for every person disabled by a chronic illness, as much as they can work each day, week or month, even if it’s just an hour by telecommute.

            The problem with most of the general financial advice out there, from Suze Orman to Money magazine, is that it assumes a certain amount of existing wealth and savings, and a normal working life span. For people with CI’s, it’s often just not the case. We can’t bump up our retirement savings by maxing out our 401k if we don’t have one. We can’t contribute to an IRA if we’re trying to stay in our apartment and out of the homeless shelter. We can’t pay for $600 a month in uncovered medical expenses by cutting out that daily double latte – because we could never afford it in the first place.

I’d like to create a clearing house of information, remove the smoke and mirrors that make it so hard for us to move forward financially. For the Normal ones, I need to show why their chronically ill friends and family members, unless they are married to a very high earner or have a trust fund, are barred from taking part of the working world.

What I don’t want to do is provide a platform or ad space for anyone selling the particular services of any investment company or financial planning service.  I get confused and angry when I read a seemingly intelligent blog, and see bogus Cure-All, or Make a Million Dollars at Home, or Life Coach ads popping up.

I worked healthy for 15 years, sick for nine, and had to stop full-time work ten years ago. I soon found out that I knew more about working with a chronic illness, and managing financially, than any of the career coaches, books and services out there. I was a business writer with a specialty in personal financial planning. I was and remain shocked and dismayed at the bad advice well-referred therapists, life coaches and career coaches handed out to me. It was often financially dangerous, sometimes unethical and possibly illegal. Above all, it was useless.

While previously I’ve written some critical things about the financial world (see my website www.ChristinaGombar.com) I thank God for what I learned there every day. And being risk-averse by nature I latched on to some very sensible, conservative investment advice, and I offer it in a very general way without naming names. My foremost advice is: Ask Questions, Educate Yourself. 

My first major project at my last job was writing a personal financial planning guide for people coming out of school with big debts, who were also committed to low-paying idealistic professions.  I’d like to put together something similar for people with CI’s and their families, because there’s nothing out there for us right now.

 Here are some useful beginner informational links about working with chronic illness:

http://www.barackobama.com/pdf/DisabilityPlanFactSheet.pdf

Above, the disability reform plan Barack Obama campaigned on.

A few years ago Lisa Belkin wrote a piece in the New York Times showcasing the difficulties of working with chronic illness.

http://query.nytimes.com/gst/fullpage.html?res=9807E5DA1630F934A25751C1A9639C8B63

Jennifer Jaff is a lawyer with Chron’s disease who’s founded a nonprofit organization to help chronically ill people with work/disability issues.

http://www.advocacyforpatients.org/

 And More magazine’s May 2009 issue, “Ill in a Day’s Work” examined both sides of working with a chronic illness.

 http://www.more.com/2046/4359

 I’m looking for impartial, third-party legal and financial experts, who can help us create a database of information to share with the chronic illness community.  If you’ve got a “this will transform your life” Snake Oil type of life/health/financial solution, I’ve probably tried it already.   

So far, I’ve found no push-button solutions to either the health of financial challenges of living with a chronic illness. And if I do find that magical cure, I promise to share it immediately, rather than bury it in some pyramid scheme.

I’ve emailed Suze Orman and a number of other financial gurus, looking for advice for the CI community. The concept of being disabled before one has accumulated substantial savings isn’t even on their radar screen.  No investment advisor has a plan for someone with an empty bank account.

 Rosalind Joffe a career coach for women with chronic health issues,  last year published a book, Keep Working Girlfriend – Women, Work and Autoimmune Disease, co-written with Joan Freidlander.   In a recent blog tour, Joffe explained:  “When we wrote the book, we actually created a specific character that we kept in mind … She is in her mid 30s, a professional, a mother, living with autoimmune disease with mild and periodic disabilities and is very worried that she might not be able to work in the future. We saw that there were multiple forces that seem to discourage her from working. We wanted to create a book that would raise enough issues to encourage her to push through the hard times of working, raising a family and living with illness to counterbalance the opposition she faced.”

I’m looking to address the needs of not just thirty-something Moms with a fall-back husband income and insurance protection, but everyone, in all types of careers, and including men – because in my experience, they feel the impact of career-loss even more acutely than married women.

 Reality Check Needed:

The women (and men) I’ve met in the chronic illness community – in my doctor’s drip room, online, people who’ve called me responding to pieces I’ve written – worked until the bitter end, worked until they were taken away on stretchers, often fired without disability pay simply for being ill. When we strike up conversations hooked up to our IV’s, the first thing we talk about is – Do you still work? When did you stop working? How did it go? Many have a lawsuit pending, because their employer refused to accommodate their illness: they were essentially fired for being sick. After publishing an article, I got a phone call from a once-middle class woman, now homeless due to Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS). She’d been socially and financially frozen out by most of her family. One brother was sympathetic, but his church-going wife opposed either letting her ill and homeless sister-in-law move in, or his supporting her in any way financially. He did manage to transfer the many Marriott points he’d earned through his extensive business travel to her, so she was intermittently able to stay in comfort, when she wasn’t scrambling for a bed in a shelter.

The Marriage Penalty

Chronic illness kills 80% of marriages in which they occur, so most women do not even have the option of being dependent on anyone.  When I travelled to Washington to ask Congress for more CFIDS research funds, my lobbying partner was a divorced woman holding an M.A. from the University of Chicago, who’d held high government offices and once ran her own business, who had been reduced, for a time, to living in her car. She now has a clean and safe trailer. Brain damage caused a speech delay, as with a stroke victim, and at 50 she walked laboriously with a cane.

Family Matters

Another woman, a former Boston lawyer, who left her job thinking she could freelance, got too sick to work at all, and having left of her own choice, was ineligible for disability pay. Eventually she moved back to her native New York to help take care of her aged mother, and stayed on in her apartment. “I wish I could set up a video camera so I could show how verbally abusive he is to me.” She stays because she cannot afford to live anywhere on her own, or to even share with a roommate. Many of her experimental medicines are uncovered by insurance, and she is so weak she can’t use public transport, and so takes cabs across town to see our doctor.

Another woman I know, a once well-earning professional with a Master’s degree, would like to move home with her mother in suburban New Jersey, but is unwelcome. If she doesn’t get the wrongful dismissal settlement she hopes for from her former employer, she will be forced to move to a group home for the mentally ill. She isn’t mentally ill, but like many people with Chronic Fatigue and Immune Dysfunction Syndrome, was written out for depression by the Social Security Administration. This is a common ploy, because it is easier to kick people with depression off the system.

This is the reality of chronic illness. The more I talk to people, the more I realize how fortunate I was, to have been well enough to establish a career before I got sick at age 30. To have realized early on that the variables of a chronic illness don’t mix well with the variables of running my own business, when I didn’t have a family or husband able to serve as banker and safety net. To have picked to work for a company which at least gave lip service to whole life needs. To have been lucky enough, at least at first, to have a boss who understood and tried to accommodate. To have disclosed the day I was hired. To have a company that didn’t give me too much trouble when I finally had to be taken out (more or less on a stretcher) – and who still contributes a small sum to a pension, pays for not only my, but my husband’s medical insurance – which was a Godsend, when he went several years without a steady job during the post- 9/11 recession. My disability package secured and paid for our mortgage and expenses for at least three years. Yesterday my husband got his historical Social Security Statement. His income for 2002? $5,000. From close to $100,000 in 1999. Through all this, my income was invaluable.

The Disability Trap

When I first got sick, it wasn’t hard to find lawyers and articles and books and lawyers to help me prove my disability and collect it.  But no one offered a strategy for getting off disability, and ever since I went on disability, I’ve wanted to get off. But considering my health, my whole life circumstances, my hellish experience working sick for a decade, both freelance and on-staff, and the punitive “work and lose” system currently in place, I don’t have a lot of choices.

This week, I face typical issues. What do we pay for? The $250 brakes my husband needs on his car for his 170 mile a day commute? The $300 bald tires that must be replaced because I already got a warning from a cop? The $1,000 I need to travel to New York where I’m trying to sell my novel – which I hope will get back in the earning world? The usual $1,000 I spend each month in uncovered health costs – my supplements, my $100+ trip to Dr. L in New York for my energy-restoring drip, the Goji juice that actually seems to give me energy, but costs $42 a bottle? My gluten-free food and the expense of eating healthfully and organically? The new miracle energy supplement so many people are raving about, but which costs $85 a month? And where do I find money for wedding and graduation presents?

The Poverty Cycle

Cort Johnson, web host and editor of this Phoenix Rising newsletter, camped in the dessert as a young man, so as to be independent and not impose on his family, making pocket money from fast food jobs. He thought he was doing the right thing, ingesting a mega-dose of protein and fish oils, surviving mainly on cheap canned sardines. He also got an overdose of mercury. I meet many, many people in the drip room who can’t afford to eat well enough to improve their health. They have gone into debt with experimental drugs uncovered by insurance, with modalities like acupuncture, to say nothing of the Snake Oil cures they sample out of desperation.

The Insecurity of Social Security

I hope I’ve made it clear by now that there’s a lot more to the issue than the willingness to work.  It’s true that you can make $710 above Social Security disability, but if your check is only for $500 a month – as it may be if you got sick in college and never established a work history – that’s not close to an independent life. I know many people who tried to do the right thing by trying to work their way off Social Security, but due to employer demands and bookkeeping glitches, sometimes earned slightly more than $710, at which time they  were immediately and completely dropped from the system, without health coverage or income, and had to pay lawyers to get it reinstated. One woman wound up evicted.

Entrepreneurial Dreams

It’s a wonderful idea to work from home. But I warn anyone starting a business to have a safety net – three years living expenses, because that’s how long it takes for a typical business to turn a profit.  Second to having a health crisis, starting your own business is the easiest way to go bankrupt in this country. You need capitalization — money – to start with, and that’s something chronically ill people are generally already depleted of, due to under- or non-earning, plus greater medical expenses than average. And I advise to never, ever use credit cards to fund your business, or for your own day to day expenses. If you have a spouse or family willing to be your banker, you’re in a different situation, but such people, I’ve found, are rare.

In one day, in Dr. L’s drip room, I met an attractive young woman, blond and thin, who said she was in town with her fiancé, a medical resident. She worked as much as she could, for her mother, who had a health food business. This young woman was well-situated for her very part-time career – but she’s a rare bird indeed in the chronic illness world. Another young woman I met the same day had returned to New York to live with her mother when she got too ill to work in Seattle. Her mother disbelieved that her CFIDS was a real illness, and threw her out. She was now “on the street” – living in homeless shelters, and turning tricks.

Tainted Income

One of the hardest things for people with chronic illnesses is conveying to their friends and families the financial spot we’re in. Our experience is often one of shame – one woman I know is berated by her father for being on “welfare” – and disbelief, rather than compassion.  God bless all with families that can be supportive emotionally and financially.

Unfortunately, say the word disability pay, and many people scoff. Here in Rhode Island, a former fire chief makes $150,000 in retroactive disability pay on top of his state pension. The system is frequently abused, mostly by public and union employees. Those of us of marginal means and real illnesses are tainted with that brush.

I would like to bring to public light the tactics insurance companies use to scare us into submission. These are issues that should be open to discussion and negotiation. We want to work. Employers and insurance companies don’t want to pay us for not working. The missing player here is an employer who’s willing to accommodate us.  

I’m in search of companies and employment agencies willing to risk hiring the chronically ill. I’ve heard of agencies that specializes in flex- and part-time work, geared towards parents. Will they, and companies apply that same flexibility to those with variable chronic illnesses?

From ADA to the DL

 Many companies talk a good game about working with people with disabilities. There are also a number of books out there, like Gayle Backstrom’s I’d Rather be Working: a Step-by-Step Guide to Financial Self-Support for People with Chronic Illness that ought to be consulted (but actually offered no answers for my own particular health/life dilemma) and Job Hunting for the So-Called Handicapped by Richard Nelson Bolles – who gave us What Color is Your Parachute? – and Dale Susan Brown.  The idea behind these books is laudable, but as one who worked ill for a decade and has been trying to get back into the working world for another, hard to put into practice for someone with multiple and unpredictable physical and cognitive malfunctions – a fact noted in the latter book. But by all means, read them along with Keep Working Girlfriend (if applicable) – they may well contain the answer to your own career/earnings problem.

 The Americans with Disabilities Act was designed to encourage  employers to accommodate people with static, or predictable disabilities – paralysis or sensory disabilities.  A new amendment to the law was designed to encourage employers to accommodate people with the kind of multiple, cyclical and unpredictable disabilities typical of autoimmune disorders.

 The details of the law can be viewed here: http://www.eeoc.gov/ada/amendments_notice.html

 Jennifer Jaff, the disability lawyer and activist who the founded Advocacy for Patients with Chronic Illness, Inc. (www.patientadvocacy.org) who herself suffers from Chron’s, is at the forefront of safeguarding such workers.   

If my own company had  been able to accommodate my illness, I never would have had to join their dole qeue. All they would have had to do was let me do what I’d done for them the previous eighteen months of freelancing, before being hired on staff: work part time in the office, and part time at home. Ironically, to get the health benefits I needed to keep my health optimum, I had to do something – show up at their set times – which was really not necessary for the performance of my writing job – but which ultimately caused my health to cave in.

The Disability Dilemma

            I’m looking to make this a visible cause, so I and other people don’t have to hear the snide comments we all hear every day of our lives about the fact that we don’t work for pay. And I want to do something even more challenging – I want to change private insurance laws, like the one that says that if I make any money at all, my income, medical coverage, pension and benefits will go away. Forever.  

A few years ago, I applied for a part-time university teaching job and was offered it. I wasn’t sure if I could handle the load of teaching two classes, especially as they were held early in the morning. No matter if I go to bed at seven p.m., I always feel horrible in the mornings due to adrenal malfunction.  But I was desperate to work, to be in the world. The problem was, this teaching, which I wanted to just try for a semester, only paid about a quarter of my disability pay, and came with no benefits or promise of job security. And it would end my company’s disability income forever.

After consulting with my lawyer ($400 an hour) I found I couldn’t do it. He’d had the exact situation with another person from my company who’d gone off on disability with Multiple Sclerosis. She was punished for just trying to see if she could work. He even told me that if I pulled the same trick, he might not even want to take my case, it was too much trouble, the big guns at my company were determined to get as many people off the roles as they could.

I asked the university department head if she would let me work without pay – perhaps my salary could be funneled into some sort of escrow account, available later if I can get off disability? I just wanted to work. No – things had to be done by the book.

Financial Snake Oil

Career coaches working with people trying to get off disability have recommended I actually give a false Social Security number – my husband’s — in order to collect money. They are not thinking things through – just getting seduced by their own Financial Snake Oil cure. But the above example shows how impossible it is to get an ethical, solid organization to do something even slightly questionable.

I wish it didn’t have to be so punitive. The nature of my and many other chronic illnesses is that they’re cyclical. I used to feel pretty well for months – even years at a time. Before I went back to full time work in 1995, I would have described myself as cured. I went on a bike trip in Nantucket the weekend before I started that job, and rode 30 miles a day. The house of cards came tumbling down a few weeks after I started work full time.

This is the kind of story that Suze Orman doesn’t cover, because she has no answers. This is the kind of story for which I want to find a happy ending. ~~~

Advance Excerpt from: Breathing Under Water, Living With and Lying About Chronic Fatigue Syndrome. Copyright 2009, Christina Gombar.

 Easter-Island

I’ve joined Exhale  — a literary magazine for intelligent readers who have either lost a baby, or can’t figure out how to make one in the first place. I’ll be examining books, blogs, mass media and other art forms’ creation fixation.  In my first column, I wonder why the story is always Baby and Happily Ever after, when 44% of women don’t even have children. I feature the work of multidisciplinary artist Tiffany Lee Brown, whose Easter Island Project explores how a culture’s ancestor worship nearly brought creation on that island to a grinding halt.

 The myths: 

• People can go from desperately wanting a child, to “choosing” to be child-free.
• Anyone Can Adopt.
• Women wind up childless because they put off marriage to establish careers;
• Or were looking for Mr. Right instead of Mr. Good Enough.
• Anyone who wants a baby can get one, because this is America, where there is a solution to every problem.
• Pets, gardening, or spending time with other people’s children fills in for not having biological children of our own.
• People without children aren’t real adults, and don’t know what real love is.
• Infertility is a women’s issue.

Missing in these pervasive, reductive myths, mainly produced by prescriptive how-to books, are the infinite number of individual stories describing the long, complicated, and sometimes unspeakable circumstances that may have led up to someone’s childless status. There’s no category in the current zeitgeist for ‘When all systems fail.’ 

 Here’s a real story:

My friend Elsa’s older fiance had two children from a previous marriage, vetoed more. She agonized and underwent lengthy soul-searching before deciding to go ahead with the marriage, determining to embrace a child free life.  She was relentlessly badgered by everyone from neighbors to co-workers to family members to change her husband’s mind, force a baby on him if necessary. A cousin who’d tricked an older husband into a child advised the same strategy. In Elsa’s case, it would have been quite a challenge, as her husband had a vasectomy.  

Elsa and I lived in the child-centered, Westchester suburbs, outside New York City. I, too, was involuntarily childless, for entirely different reasons, but I can attest the day-to-day experience was scalding.  My friend was pitied, her husband demonized, Daily, she heard:

“You’re selfish”

“You don’t know what real love is.”

“Your husband will leave you.”

He did leave, because with so few counterparts in her workplace and community, her sense of being cheated of her rightful destiny shook the foundations of her sanity and corroded her marriage beyond repair.  

A good marriage wasn’t enough to counterbalance either her private loss or her public alienation. So much for the Child Free Myth.

 The Invisible Woman

             I come to this issue as a childless-not-by-choice woman in the midst of the biggest baby boom since the end of World War II, when newscasters tout their children on air and every actress seems to be having twins at 47.

           But 44% of women in their childbearing years don’t have children, and some never will.  While the world is rightly concerned with family issues, the constant focus on motherhood can make it easy for a childless woman to feel that she’s less than a woman, that in failing to reproduce, she’s failed at life.

Simone de Beauvoir famously said, “You can’t have the book and the baby.” History proved her wrong. But these days, those of us who wound up without a baby find that we can’t get a book either – to read or to publish.

In making initial inquiries for this column, I found very few books reflecting my situation, and talked to more than one aspiring author who found the door to publication shut smartly in her face if her story fell outside of the proscribed norms of Motherhood Achieved, or Happily Child Free.  Uber-feminist Seal press has dozens of titles on motherhood, but not a single on the lives of women without children.

Laments my eighty-something, involuntarily childless friend Bea, “Even in the Bible, all these women who can’t have babies eventually get them!”

             At City College’s Harlem campus, my professors helped me understand why African American writer Ralph Ellison wrote a book called Invisible Man. As well as being excluded by segregation, African Americans saw no reflection of themselves in literature, government, commerce, art or advertising.

            These days, it’s the same for those without children.  When I was growing up in the 70s, there was this progressive idea floating around that a woman could live a rich, rewarding life full of close, fulfilling bonds, even if she didn’t marry and have children. In Mary and Rhoda, I saw an alternative future self on the T.V. screen.  Such depictions are nearly extinct now, as the publishing industry churns out book after book with a variation on the theme, I Overcame Fertility and You Can, Too!

 The Bubble of Silence

            In my own online search for kinship, I’ve come across dozens, if not hundreds of blogs whose purpose is to aid and abet the great fertility quest. Like a tenacious shopper at a discount warehouse, I foraged long and hard, and was finally rewarded with a shining jewel, multidisciplinary artist Tiffany Lee Brown’s blog Nymphe: Living Childless and Childfree, at http://magdalen.blogs.com/nymphe/www.Nymphe.com. Linked there was a piece published in the Oregonian Humanities Magazine, “Breaking the Bubble of Silence,”  detailing how merely relaying to fellow artist friends the subject matter of her most recent performance piece — on the grief of being childless – stopped the conversation cold.

 “If I’d announced that I was having a baby, the others would have heaped congratulations on me. If I’d brought out a photo of my lovely stepdaughter and told them of her soccer exploits, they would have chuckled and asked questions. Even if I’d softly admitted that I’d been having a hard time since my aunt passed away, they’d have offered condolences or a hug.

But childlessness is a pain experienced in silence. There is no place in civilized conversation for such discussion. No one really knows what to say, and there are no social rituals with which to mourn miscarriages or unsuccessful fertility treatments.  

The grief of childlessness visits us for many reasons. Some are infertile. Others don’t have a partner and don’t want to be single parents. The deep need to procreate hits us with a staggering intensity, as primal and undeniable as the need for food, water, and sex. The enormous role of children and family in our cultural, community, religious, and political environments reminds us constantly of what we’ve lost–what we’ve never had in the first place. Many of us feel ashamed to discuss childlessness in public for fear of undercutting the joy of parents and families. And when we do bring it up, we often hear clueless, insensitive, and sometimes cruel responses. So, most of the time, we keep the discussion safely shut away.

          Her year-old blog offers a round-up of mini-book reviews  and links thoughtful pieces in the alternative press, like a recent Mother Jones piece on the preponderance of new “fertility movies” like Baby Mama and, And Then She Found Me, asking “where are the women without bassinets?”  

            The Portland-area artist has been deeply engaged in exploring the issue of infertility and childlessness in her art – music, visual, performance and writing.

 Her art goes beyond the issue of personal grief to explore socio-political concerns and the family-centric society.  

            When her own infertility situation hit, it brought into question her entire lifestyle, and all the choices she had made. Her work is engaged on a global level, examining the very concept of Creating.

            “What makes us create?” she asks. “There is this tremendous excitement in our culture about creating – whether it’s babies, buildings, or bombs.”

            Currently, her Easter-Island project, touring and interactive on her art site, explores this issue: http://www.magdalen.com. It also gives visitors a chance to participate and offer their own tribute to their own infertility situation.  

            Lee Brown has been fascinated the South Pacific island since the age of six. “In a way, I see it as a micro-cosm of a world, tied deeply into the whole concept of creating, fertility and childlessness.  Once well-populated, the island was filled with fertile, abundant tribes, who fought each other.” Easter Island is known for its huge monolith face-sculptures, ancestral totems worshipped by islanders. The tribes were thought to have moved the figures around the island, in the process cutting down the trees, destroyed the ecosystem, and deprived themselves of the means to go out on the sea and fish. Thus, Easter Island, once a baby-happy place, became greatly depopulated and barren. 

            “It’s the idea of making babies, and making art, and the ancestral chain. People have babies as a way of connecting to their ancestors, by continuing the line,” she says.

            “Giving birth is a way of connecting with their grandmothers, an unofficial spiritual ancestor worship we all practice,” she says. “Yet, this practice helped wipe out much of the wildlife and population of Easter Island.”

            Says Lee Brown, “Our society is messed up when we’re viewed and defined by roles we’re supposed to occupy, as Mom and non-Mom. The system that tells women motherhood is going to be endless bliss, and that finds so women distressed at their real, challenging and less than blissful experience is the same one that tells non-Mom’s that they’re lacking for not being mothers. There’s the ancient regime telling us we have to be mothers – and the new one where it’s constantly in our daily lives, and a media pitting working Moms against stay at homes and Moms marginalizing and devaluing non-Moms. The divisiveness of pitting child-free or childless against Mommies keeps us from understanding each other.”

While Brown characterizes herself as feminist, she sees the issue as “Totally crossing gender boundaries. Men, women, transgendered and other-gendered people — all of us experience the pain of childlessness, whether by choice or circumstances, and prejudice as a result,

Infertility Is a Men’s Issue

  “I very much wanted to have lots of children,” says Patrick Tracey, author of Stalking Irish Madness, Searching for the Roots of my Family’s Schizophrenia – named one of Slate magazine’s Best Books of 2008. After an idyllic childhood as the youngest of five siblings, the first of two sisters succumbed to rapid-onset schizophrenia when he was eighteen. “One after the other. I realized that like my mother, I could be a carrier. Or worse, might go schizophrenic myself.”

Schizophrenia generally manifests by 30, and when Tracey cleared that bar, he began to think earnestly about marriage, and worry “fervently” about paternity. 

“Marriage would’ve suited me fine,” says Tracey, still single at 50. “But every woman I met was frantically running out of eggs.”

He tried to tell them he was not Daddy material, given his questionable gene bank and progressively heavy drinking.

“I was hit hard by my family’s collapse.” Before he graduated college, his mother died suddenly of a brain aneurysm, he thinks, spurred by “grief and loss”  soon after her youngest daughter was diagnosed with the hereditary illness.

“I felt there was not much point to life if something like schizophrenia–or a similar life-shattering tragedy–could just come along and take someone out.”

He became a serial monogamist, “An outgrowth of my commitment-phobia, itself an outgrowth of my fear of passing on this severe hereditary mental illness. I tried to disguise myself as a noble alcoholic savage.  Truly I was all over the place.” 

 It wasn’t until he hit bottom, alone, that he straightened out. Traveling to Ireland, he found the roots of schizophrenia in maternal malnutrition due to famine. While doing his research, he lived on a campsite where he observed families at close hand, with a raging storm of feelings.

“I am endlessly fascinated by families,” Tracey admits. “The way they interact, their dynamics, what makes them tick, why some find a measure of happiness where others do not, how some play a bad hand well and others with the best cards toss them away. My family was torn asunder, schizophrenia cast a shadow over us all, the sane obsessed that we might be carriers.”

Why didn’t he just find a nice girl and adopt?   “The ugly truth is that I was not fit to parent. Drinking was a form of self-laceration — survivor’s guilt, a way of going crazy myself every night — a mixed-up man’s way of crying.”  

Though eight years have passed since his last drink, at this stage of his life he’d rather help his ill sisters and his nephew – the sole offspring among his four siblings — than start his own family.
        But he feels he’s paid a big price for his choice. “I could’ve been a good father and family man if I hadn’t got lost in despair.  I’ve had some great relationships, and vent my paternal spleen through my nephew.  The care of him fell to me from the late 1980s through the 1990s, but I never dared spread my own seed.”

When he’s around a particularly well-adjusted family, he can’t help but feel like an outsider:  “Families gather with other families, and in Ireland they were out in force.”

But he felt less the odd man out when he saw himself reflected in the community. Every other village, he found, has a Bachelor Walk or some bachelor legend. “Ireland has a rich tradition of bachelorhood,” he discovered. Only the oldest sons were financially eligible for marriage, and they had to wait until they inherited the tiny potato patch. The younger brothers were either sent to the seminary, abroad or became bachelors.

Men’s Biological Clocks                    

            Ironically, Tracey learned, this primogeniture of oldest sons – who only inherited the family property at 50, when their own fathers died – is one of the major contributing factors to schizophrenia itself. Recent studies have linked the schizophrenia gene to a mutation in elderly sperm, detailed in the memoir. www.stalkingirishmadness.com.

 Further reading: An intelligent discussion of fertility blogs appears at:

http://www.thenewatlantis.com/publications/blogging-infertility

A blog exclusively devoted to those who are childless at the will of their spouses: www.childlessbymarriage.com

 Upcoming: author interviews with acclaimed writers. Ann Hood, author of the novel The Knitting Circle, and memoir Comfort, both of which deal with child loss, and Elizabeth McCracken, whose recent memoir An Exact Replica of a Figment of My Imagination tells the story of her son’s stillbirth.  Visit www.ElizabethMcCracken.com to read an excerpt in Oprah magazine.

Cut Out of Each Other's Lives

 

 

Cut out of each other’s lives:  friendship was a casualty of illness, money problems, and divorce.

 A Short Story in Three Parts. Featured in Rita Watson’s nationally syndicated Relationships blog: www.ritawatson.com

Julie grew more angry and distressed at the strain of the mortgage, taxes, and unanticipated household repairs.

I dropped hints: “You could rent out your house and get a nice one bedroom and pocket the change,” I said. “You could refinance. You could use a roommate service and screen candidates.  You could place an ad.”

 Julie vetoed all suggestions.  She was not going to move, and she was not going to get someone in off the street. Candidates referred through friends proved unacceptable: “I don’t want someone else’s – stuff – all over my house,” she spat.        

Every time I talked to Julie things were worse. She descended into panicked thinking.  Instead of paying $75 to have someone look at her broken dryer, she hauled wet clothes to a Laundromat for months. Why didn’t she get her new boyfriend (a handyman) to look at the malfunctioning appliance?  She didn’t want to be “dependent.” My husband invited her to my 40th birthday luncheon. I should have told him not to, because it was held at a gaudy, overpriced restaurant, attended by prosperous people whose ostentatious materialism, I knew, she would loathe.

My best Wall Street-era girlfriend boasted of having just bought two mink coats. Noting the acid downward curve of Julie’s mouth, I thought, I ought to have told her not to come.  She hated these people, and she was starting to hate me, with my marital compromises, stay-at-home life, my new blond highlights.  About six months after Julie sent Dave away, she began to talk about her neighbor’s husband. “Don’t waste your time,” I told her, “flirting with married men.” This wasn’t what I expected when I handed her a check to help speed up her divorce.

More than half a year passed without a dollar repaid. My husband and I had money stresses of our own by then, and I had to come out and ask for my loan back. Julie had just spent a weekend with millionaire friends.  As I’d been talking about our own unexpectedly huge tax bill, I assumed she’d got the hint and arranged her visit to relieve me. I was wrong.  Julie was livid.

“Look,” I said in my defense. “You’ve had a boyfriend for six months. Why can’t you ask him for a loan, or to move in and help with the bills?”

Julie hung up on me, furious.  Within a month, I got a check for the full amount of my loan in the mail. We had no contact for a year. I finally called and learned that her handyman boyfriend was long gone, and her ex-neighbor’s husband was living with her, and that he, too was divorcing.

Sounding upbeat, but hardened, Julie dismissed my good wishes for her new relationship; she had no interest in marrying this man. He paid his share and did things around the house. His ex was awful, took the kids back to Maine.  She would make use of him till the expiration date ran out.

Hanging up, I thought back to Julie’s wedding — the white dress, the lilies, the dark cathedral, the hopeful, holy words, the peacock bursting into full plume. I thought of the dance performance the night she announced her divorce.

I suppose I often see myself in marriage, indeed, in any relationship, as the Minotaur – stumbling along, half an awkward hybrid body, struggling to reconcile the ugly with the sublime. I easily forgave Julie her bad temper and outbursts at the time of her divorce, but could not forgive the home wrecking, nor could she forgive my judging her dark side.

Naively, I’d thought our friendship would outlast our marriages; I thought it would flourish forever. But like the peacock’s fan, its glory was short-lived. I thought of her declaration: “All relationships have expiration dates.”

Ours, apparently, had run out.  ~~~

 

Chronic Illness strained my marriage almost to the breaking point. I chose to stay; Julie took a different path when she and Steve hit the rocks.

Expiration Dates: A Short Story of Friendship and Money in Three Parts.

Featured in Rita Watson’s nationally syndicated Relationships blog. www.ritawatson.com

 “You know,” I confessed over our Cobb salads, “when I was cleaning out my closet, I thought of throwing out the dress I wore to your wedding.”  It was a cheap, pale green catalogue dress from my days as a freelancer, when I watched every penny while saving the down-payment that finally liberated us from our suffocating New York apartment. “That was the only time I wore it,” I said. “I was only holding onto it for sentimental reasons. I guess it’s O.K. to throw it out now.”  She agreed.

There was another reason I wanted to toss faded green dress — it signified bad times and I was ready to embrace a new future.

I was enviably thin in those pictures at Julie’s wedding. I smiled, but my eyes belied deep distress.  If anyone had asked me then if I thought my marriage would make it, I couldn’t have answered. 

At the time Julie married, I had just found my husband out in a betrayal. He’d run up debts that nearly canceled out all the money I’d been scrupulously saving and investing for house, baby, and our future.  His betrayal of trust wiped out years of dreams.

Somehow, putting that pale green dress in the bag for Good Will, gave me a new sense of purpose. I wanted to believe that I could put an end to the hurt that I experienced during those four years between Julie’s wedding and her divorce dinner. 

I watched her eyes and wondered if people would see pain in my own if I chose to end my marriage rather than stick it out?   My husband and I managed to get out of debt and heal the emotional wounds, but overwhelmed by the strain of working full time while battling my illness, I lost my health and any hopes for a normal life.   

Perhaps learning from my example, Julie chose another route, refusing to take a financial hit for a man. Since she and Dave had moved in together six years before, she’d switched jobs several times, doubling her salary to afford the modest home they’d purchased in their third year of marriage. 

Dave, on the other hand, was in the same job, earning the same money, so they could barely afford their new mortgage payments. Despite her constant encouragements, which degenerated into nagfests, Dave did not jump-start his career, see a therapist, get tested for a range of physical maladies, lift a finger around the house bought with only Julie’s money, learn to balance the checkbook, shop or cook, or get a car so Julie wouldn’t have to drive him everywhere, as if he were the teenage son she never had.

Julie tired of screaming. As she explained over our salads, she was basically a happy, peaceful, loving person. Under the current circumstances, she could no longer act kindly towards her husband. “I just see myself as an embittered old hag at 50. I want to get out while I’m still young enough to meet someone else.” 

But I was worried about how she would manage. Under my fiscal guidelines, she and Dave could barely afford to run a house together. She claimed she could do it on her own, for at least a month or so. Then she’d get a roommate. 

Two weeks after our divorce dinner, Dave was still in the house. He couldn’t find a place he could afford. Julie dropped hints; I offered a loan to hasten his departure. I’d lent her money before, for her down payment, and she’d paid it back in full and in a timely fashion.     

“All relationships have expiration dates,” she announced philosophically at our next lunch.

“You’re getting a roommate soon, right?” I said, handing her the check.

But month after month went by, and no roommate, and no loan repayment. I knew she needed time on her own, without the additional stress of sharing her home with a stranger. But I couldn’t help noticing she had money for new clothes to cheer herself up, for entertaining her young co-workers from the city, for buying wedding gifts for people she hardly knew.

(End of Part II)

  

A Short Story of Money and Friendship in Three Parts

Featured in Rita Watson’s nationally syndicated Relationships blog: www.ritawatson.com.

When my best friend Julie told me she was splitting with her husband, it didn’t come as a complete surprise.  She’d sounded uncharacteristically tense when we talked on the phone over the past few months. We hadn’t had an in-person heart to heart since the winter before, when on her 41st birthday, she talked in desperate tones about facing the future with her husband, Dave. 

Since then she had stopped complaining about her husband, hardly mentioned him at all. Our telephone conversations skittered over the surface of things – updates of her hectic job and crowded commuting days, contrasting with self-deprecating anecdotes drawn from my less eventful life – which went from a corporate whirlwind to a first-time suburban housewife – thanks to a relapse of a chronic illness about which I am often in denial. Nonetheless, courtesy of my company’s short-term disability insurance, I felt a mixture of childlike glee and adult guilt at my first laid back summer in decades.

With the anticipation of a child going on a favorite play date, I awaited seeing Julie in person for the first time in months.  When I flung open the door to embrace her, standing before me was a woman with a pinched, tormented face.  Her emaciated frame said it all before she delivered her news. It was painful to see her lovely, happy-go-lucky self suppressed; I was glad she was exiting a torturous situation.

She told me of her plans to divorce just before we sat down to watch a dance recital held in the Riverside Cathedral, whose majestic grey stone silhouette dominates the western shore of the upper west side of Manhattan. Four springs before, Julie and Dave were married just a few blocks east, in another great Cathedral, on a small budget but in great peripheral splendor, in one of the chapels of St. John the Divine. 

Four years before, I had shopped with Julie at Laura Ashley for her wedding dress, observed her arrange the entire event elegantly but cheaply — negotiating with chaplains and cajoling florists and caterers to offer their services as wedding gifts. I’d seen her research, book, and single-handedly pay for the honeymoon.  

The misty weather that day suited a ceremony in the dark cathedral. Outside, the spring foliage was bright green and new, the trees just bursting into flower.  She’d instructed the minister that Children and the Will of God be mentioned during the service. To honor her husband’s Scottish heritage, bagpipers played Amazing Grace at the exit, and the sounds moistened our eyes. As if on cue, one of the peacocks that prance around the rectory burst into plumage: a good omen. 

But four years later, as I look back, I see it was a false omen.

At the reception, as dry ice clouded the stage, eastern flutes piped over the soundtrack, and the dance performance began. The dance’s theme centered on the ancient Greek legend of the Minotaur — the half-human, half-bull god who, the program notes explained, “represents the collective dark roots of humanity that have been denied, repressed and locked away.” 

It was a bit too obvious an analogy to the realities of marriage Julie and I both knew too well — realities white-washed by images of happily ever after, Baby Gap and Range Rovers. We both knew what it was like to feel, within the framework of marriage, like the Minotaur, his dual nature a shame to be hidden by the ruling gods.

Julie and I didn’t have to talk much about the problems that killed her marriage, or the ones mine barely survived. We’d dissected them endlessly over the course of our eight year friendship, analyzing the challenge of asserting our feminist selves within the framework of marriage, deconstructing each power struggle in detail, all the while looking forward to the happy resolution when career, husband, home and child fell into place.

After the performance I drove us up to the suburbs where we now lived, and bought my friend dinner. The end of a marriage called for a solemn observance of its own. (End of Part One)

More than thirty years ago, a group of us high school friends had one of our girls’ nights out at the movies: The Deep.  The friend driving – I’ll call her Frieda – yanked on the steering wheel going around a corner — this was an old car without power steering bought with her own minimum wage earnings, in the days before parents leased their teenagers new, safe cars. Freida sighed, and said:  “O.K., the man I marry has to look like Nick Nolte, be Protestant, be good at sports, go to an Ivy League school, become a lawyer or a businessman …”  As she continued to enumerate a long, long list of husbandly prerequisites, the chorus of girls in the car squealed, “Frieda, come on!”

Only one of us had a real boyfriend then, but we all knew Frieda was setting the bar too high, not only out of her league, but out of reality. Was there a boy in our high school with an I.Q. above 77 who could compare to Nick Nolte? And if I remember rightly, no one from our class even got into an Ivy.

Needless to say, Freida didn’t marry. Or hasn’t yet. I did, though in high school I swore I never would. I’d grown up with Mary and Rhoda, saw my future self on that small screen.  It was newly O.K. to stay single, and I’d always known I didn’t need a man to be complete. I don’t know how I knew, but I did. Because marrying wasn’t on my To  Do List, I didn’t have a List of Requirements for my prospective husband. For many years – until the age of 20 – I was a Failure to Commit Female, and had little doubt I’d stay that way for the rest of my life.

My older sister had a steady boyfriend since she was three, so perhaps initially, my solitariness was a form of rebellion. Or perhaps I didn’t think I’d find someone who could live up to Dear Old Dad. Nah. My Dad was way too much to live up to.  A self-made professional, he was tall, dark and handsome (a neighborhood matron gushed, “The best looking live man I’ve ever seen!”)  Outstanding student, athletic, the strong silent type (too silent, according to my Mom) a tireless worker and good provider, he could fix, build, and make things grow, draw and project his interior design visions artfully onto our living space. He went to an Italian tailor and always carried a thick roll of bills.  Musical and always up on the trends, he took us kids to see The Eagles in the late sixties, when they were just Linda Ronstadt’s backup band. So much for my Dad, may he rest in peace. 

I met Peter my last semester of college, which I graduated a year late, having spent some extra time ticking things off my To Do List (living in Europe for a bit).  He was on the extended plan as well.  Peter is of average height, pink-skinned with red hair, of a different religion than me, “ruggedly” handsome, well-built, not the least bit silent — in fact, I had trouble getting a word in edgewise.  He made excessive references to his own father, whose American Express card he carried, whose old yellow Volvo he drove. He wore hippie clothes then and is now prone to dressing in a style usually only found on gay dandies, and is possessed of similarly fine interior decorating skills.

In the interest of avoiding extra repair bills and trips to the emergency room, I try not to let him fix anything around the house at all. He is an excellent cook (I’d probably still be nice and thin if I didn’t live with him).  He didn’t learn to mow a lawn till he was 45. I rely on him to keep me up on musical trends. (I’d still be listening to the Clash)  I never expected – can it really be 27 years ago we met? – to stay with him, or indeed anyone so long.

Here is a link to the excerpt of his memoir in progress, My Family Business, which appears in Smith Magazine.  Did I tell you he was funny? He is, very. Sometimes intentionally.