Reality Chick

    http://www.exhalezine.com/magazine/?page_id=521

In 2002, the renowned author Ann Hood lost her five year old daughter Grace to a rapid, freak, strep infection.  A novel, The Knitting Circle (2004) and a memoir, Comfort: A Journey Through Grief ( 2008) stand as testaments to that loss, and are gifts to everyone who has or will suffer in kind.

 CG: Some people who have lost a child have found books helpful and cathartic. But to a great extent, words failed you immediately after Grace’s loss. Why do you think some people are helped by reading/writing of others experiences, and others not?

 AH: As a professional writer, writing was impossible because I could only view it with a writer’s eye. I think journaling or writing your own loss story can help healing if you are not constantly editing, reviewing and dissecting like a writer would. 

CG: What, if anything, has changed for you since publishing the Knitting Circle, then Comfort – finally addressing in words what was unspeakable.  Have you had a great response from those in similar situations? 

I’ve received literally thousands of emails expressing the very thing I hoped the books would accomplish:  validating the feelings of grief. You are not crazy. You are not alone. You are heartbroken.

 CG: You open the book with the comments you are forced to endure: people telling you what to do, how to respond to your tragedy.  But some bereaved parents judge those who kept their distance after hearing of a still birth. Others prefer to be left alone, like a wounded animal, fearing the force of their rage will make them incapable of monitoring a response. If there was one thing you could tell the world to do for a person who has lost a child, what is it, if anything? 

Don’t presume to know what we are feeling. When someone says ‘I can imagine how you feel,’ — it’s almost insulting, though not intended as such.  It is true that losing a child is one’s worst fear. And it is unimaginable. Better to listen to how we feel than to tell us how we must feel, or how you would feel.

 CG:  You’ve written of the intense joy you experience while holding your new adopted Chinese daughter, Annabelle, while concurrently, and equally intensely, still feeling the anguish of losing Grace.   

 AH: Every day I am struck by feelings of joy beside my grief. Even in small things: laughing with a friend, the satisfaction of completing a project, a beautiful day. Yet all of it is juxtaposed against losing Grace, against her absence. C.S. Lewis wrote about the death of his wife: her absence is like the sky. It covers everything. 

  Ann Hood’s new novel, The Red Thread, will be published by W.W. Norton in May.

http://www.annhood.us/

 From Comfort:

 ”I have been there. I am the one woman standing in the street on a Thanksgiving afternoon, screaming and pulling out my hair. That is my mother coming out the door, yelling my name. That is me, running from her, running down the beautiful street where houses wear plaques announcing how old and important they are. That is me making that sound which is both inhuman and guttural and the most human sound a persona can make: the sound of grief … That is me running, zigzagging, trying to escape what is inescapable: Grace is dead.”

Copyright 2008, Ann Hood, Comfort, A Journey Through Grief.

Should IVF Coverage Be Mandatory?

           A couple of Decembers ago, I got an email from Resolve, the national infertility organization — a plea for end-of-year, tax-deductable donations. “Imagine a world where fertility treatment didn’t exist …”  began the missive.

            It had been years since I looked to Resolve for aid in my finally defunct effort to have a family. The organization claims to serve a dual purpose: to prove information and support to those pursuing children, and reconciliation to those who wind up without. But the overwhelming number of communications and services, and the only lobbying activities – urging Congress to pass laws to make insurance coverage for fertility treatment mandatory — were geared towards the baby quest.

              So I deleted their emails after a quick skim. But having planted the idea of a world where fertility treatments didn’t exist, I couldn’t resist an honest answer: “I honestly wish they didn’t!” 

           This spurred an instant response, offering a plea for my “healing” – as if only a wrong-thinking person could even question the fertility system.   

            I hit the reply key, and then typed in: “The fertility industry makes those of us for whom the system didn’t work even more of an anomaly than we already are.”

            Within minutes, a Resolve staffer called. She stressed that Resolve was there to listen to people like me. 

            “Good. All I’m saying is — if infertility is defined as an illness, then that makes those of us without children sick and abnormal, right? I can’t reconcile to my situation if society can’t reconcile itself to me. Plus – I have a real illness – having infertility over the age of 35 isn’t an illness, it’s biology.”

            The staffer was dumbfounded.

            I continued, “I’ve worked hard for the little financial security I have, so I’m really cheap and risk-averse. I knew most IVF’s in my age group failed. If it were a stock, I wouldn’t have bought it. But because it was someone else’s financial risk – I gave it a shot. But I’d never have gambled on it with my own money. I’d never have got sucked into the emotional maelstrom. And if no fertility treatments existed at all, I’d have much more easily accepted my childless state. And so would the rest of the world.”

            A lengthy conversation ensued. I insisted on a precise definition of infertility. At 28 it’s an illness that should be cured when possible, and paid for by medical insurance. At 48, IVF is an artificial prolonging of the motherhood timeline. Was it fair to make other policyholders in the insurance risk pool subsidize that? The Resolve staffer was shocked.

            But this year, the once-taboo arguments I raised are coming out in the open.

            In July, Salon’s Broadsheet column backed the Family Building Act of 2009, which calls for insurance companies to provide IVF coverage. Fifteen states currently require it, and Resolve would like to make it a national mandate.

            The financial logic behind insurer-provided IVF is that those who can’t afford the more expensive and precise IVF procedure use the cheaper fertility drug clomid, which may cause the release of too many eggs, resulting dangerous multiple births that tax the health care system more in the long run.

            Of infertility, Broadsheet columnist Lynn Harris declared, “It appears that we can no longer afford to treat its treatment as a luxury.”  

            Some commenters disagreed, with the predictable advice: You can always adopt. Which prompted corrective replies from other readers who pointed out that adoption is often more expensive and risky than IVF.

Other responder’s put the argument in the context of the larger health care crisis:  “When society can afford insurance coverage to provide life-saving treatments for all the children already here who need them, then we can spend more money creating new children.”

http://www.salon.com/mwt/broadsheet/2009/06/24/ivf_coverage/

Consider Yourself Warned

          In Britain, authorities recommend giving a fertility test at 30, seeing it as an awareness tool. Fertility counseling should go hand in hand with other kinds of sex ed.

http://www.guardian.co.uk/lifeandstyle/2009/aug/09/fertility-mot-children-nhs

             A former chairman of the British Fertility Society said it was crucial to tackle a “widespread misapprehension” about the success rate of fertility treatments. The chances dip sharply with age: from 31% for women aged under 35, to below 5% among women over 41.

 Mommy Oldest

            This summer, the death of a Spanish woman who gave birth at 66, leaving a toddler orphaned (she was unmarried) spawned heated debate on the blogs over whether or not there should be a ceiling-age for fertility treatments.

            In Newsweek, African American writer Raina Kelly spoke out: “Sometimes for the sake of the children-to-be, we may have to put away our longings and grieve for the children we might have had rather than go to the ends of the earth to get them. We have to think about the children, not just the having them.”

http://www.newsweek.com/id/208022

Some feminist voices argue that the reproduction playing field should be leveled – that if men can become parents at sixty, then so should women. Personally, I wonder if this is something to envy – but I’d hate to see reproduction outlawed for one sex and not the other. 

The Motherlode on Stillbirth

In her New York Times Motherlode column, Lisa Belkin asked readers how to respond to a family who’s experienced stillbirth. Again, sparks fly in the comments section, with one commentator saying that words like “tragedy” should be reserved for mass events, like the Holocaust or Hurricane Katrina.

http://parenting.blogs.nytimes.com/2009/08/13/when-a-full-term-pregnancy-ends-tragically/

Which button do I push for a dead baby?

            Stillbirth is more common that Down’s Syndrome, SIDS and HIV – one in every 160 pregnancies. Few expectant parents are aware of this, and so come to it completely unprepared — in an increasingly impersonal medical environment with no protocol for addressing it.

            NPR’s Tell Me More recently ran a segment featuring two parents of stillbirths who are trying to do something about that.

http://www.npr.org/templates/player/mediaPlayer.html?action=1&t=1&islist=false&id=111063912&m=111063895

Guest Sherokee Isle, who suffered a stillbirth in 1981, is trying to make sure hospitals have on hand a copy of her book, Empty Arms: Coping After Miscarriage, Stillbirth and Infant Death.

            She and fellow guest Alan Goldenbach, who recently wrote of his wife’s stillbirth in The Washington Post  (http://www.washingtonpost.com/wp-dyn/content/article/2009/07/06/AR2009070602918.html) point out that parents-to-be aren’t told that when movement slows down near due date, it’s a danger sign. They are lobbying for more research to find out why stillbirths occur.

In June of 2008, then-Sen. Barack Obama introduced the Preventing Stillbirth and SUID Act of 2008, but it was unable to gain much traction. (”SUID” stands for “sudden unexpected infant death.”) Sen. Frank R. Lautenberg (D-N.J.) continues the effort, “We need to know more about stillbirths to help increase awareness and prevention,” Lautenberg said. “We are crafting legislation to improve data collection so we can better understand what’s causing stillbirths and help parents looking for answers.”

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.

For the world to listen. The tide is finally turning against the unfettered fertility quest, with the sad public examples of Octo-Mom, and Jon and Kate’s marital nosedive. Finally, last month, in British Cosmo, Cameron Diaz said it: Maybe there’s just too much emphasis on having babies. Maybe if women weren’t under such constant pressure to reproduce — “shunned” was the word she used for the childless — it wouldn’t feel so terrible when it doesn’t happen.

In the British press the single, childless-for-now star has drawn more raves than rants:

The U.K.  Telegraph calls Cameron Diaz  ”the height of responsible citizenship” – for remaining childless. Hear hear!

http://www.telegraph.co.uk/news/newstopics/celebritynews/5524706/Cameron-Diaz-does-the-decent-thing.html

In this month’s Exhale, I praise the forthright star and give a rave review to Pamela Jeanne Tsigdinos’s new book, Silent Sorority: 

Summer Reading Roundup

 Some Fresh Food for Thought, plus some Old Chestnuts to bite into – try not to break any teeth!  

             In books, as well as in blogs, I often find our friends across the pond speak more realistically about fertility issues than we Americans, with our unfettered optimism. (Babies for everyone! IVF at 90!)

 Beyond Childlessness, Rachel Black, Louise Scull, Rodale Press, 2005

            I have read several books on unintended childlessness, none offered the depth of comfort and shared experience as this one. The authors are two women — one single, one married to a man who forbid a family without making his preferences clear before marriage — who sought out and interviewed other women in their situation, and let them tell their stories themselves.

            This book is head and shoulders above any other “fix the problem” or memoir anthologies on childlessness, because it ventures where others dare not go. Well-meaning books like the husband and wife-authored Sweet Grapes sugarcoat some of the ugly truths. 

 
            Other books on childlessness say “it’s no use going over whose fault it is.” Actually, there’s a lot of good in that. One of the authors, Rachel Black, has worked out with her husband that when she/they are faced with the ubiquitous and painful question, “Do you have children/why not?” She says “My husband didn’t want them.” Childless women are demonized and ostracized, and assumed to be selfish. It was his decision, let him take the responsibility socially. She also made him get a vasectomy, so he wouldn’t reproduce with someone else, should their marriage fall apart under this incredible strain, and move on to a younger woman.
                 This book also exposes what an arduous and punishing route adoption can be – especially in Britain. Adoptive parents must be rich, young and healthy — a hundred times more qualified than a natural parent. One interviewee commented on the British government’s stress on keeping adoptive children in touch with their biological families. “If they’re that keen to keep in touch, why are they not looking after the child themselves? This constant having to keep in touch, we couldn’t actually break free and be our own family, and have a proper, intimate family life, there were always going to be people looking over your shoulder, who you’re answerable to.” 

Silent No More            

If you haven’t ordered Exhaler Pamela Jeanne’s Tsigdinos’s Silent Sorority yet, here’s a teaser: 

“You should never, never ask a woman when/if she’s going to have kids. If she’s already been trying for a while, it will feel like a knife to the heart. It forces her to either tell you more than she wanted to or to lie. Because if she had wanted to talk about having kids in the first place, she would have.”

 “Telling a woman who has lost a baby that ‘it wasn’t meant to be’ is not compassionate. It’s merely a way of easing your own discomfort by dismissing ours. Minimizing our pain, be it offering ‘solutions’ or explanations only serves to make yourself feel better while inflicting further hurt on us … It’s hard to contemplate the randomness of the cruel universe, where bad things happen to good people, and it may make it easier for them to sleep if they can convince themselves that there is a reason for it, and we must’ve deserved it. Telling us you know what we’re going through because it took you X months to get pregnant minimizes our feelings. You had a happy ending. We may not.”

 “I’ve been stripped down and made new on this journey. I’ve become utterly vulnerable, and forced to see the world differently.  I’ll never have the kind of optimism that some people have that anything is possible, that it will all work out in the end.”

 “I have had to take responsibility for my life in a deeper way than I ever had before. And because we live in a society where so few seem to take true responsibility for themselves and for those around them, it is very lonely. We don’t live in a world that really embraces soul-searching, and so much of this journey has been about soul-searching for me. I think a lot of the bad and unsolicited advice and glib responses to infertility (like “just adopt” or “it wasn’t meant to be”) are because people are so uncomfortable with pain and the possibility of pain with no resolution. We can’t take away the pain. All we can do is transform the response to it.”

 Adapted from Silent Sorority: A (Barren) Woman Gets Busy, Angry, Lost, and Found, Copyright 2009, Pamela Mahoney Tsigdinos.  www.silentsorority.com.

Pamela Jeanne’s memoir is the first honest empty-handed one-person take since:

Why Don’t You Have Kids? Living a Full Life Without Parenthood,

By Lesley Lafayette

This book, published in 1994, is a bit dated — not in the essential common sense and truth of its pronouncements, but in that the boldness of the author’s opinions. They would be entirely unacceptable in today’s family-at-all-costs universe.

            I found it extremely reflective of my own experience, though it won’t be to everyone’s:

“Looking back, I can see now that my desperate desire to have a baby came not from some internal biological drive, nor was it the result of thoughtful introspection and practical planning. It was my response to a hysterical society, a culture that stripped me of my intrinsic worth and told me point-blank that to fail to reproduce was to fail.”

“…there was no opposing view, no voice of reason, no organization or group to provide a dialogue.”

            On giving up the baby quest: “I stopped beating myself up. You’ve heard the old joke about hitting yourself on the head with a hammer because it feels so good when you stop? It does.”

            Writes the author, “I know what it is to obsessively grieve and despair because I did not fit in to what society deemed as the norm, what my peers and the media and even my government saw as acceptable and ‘fulfilled.’ I know what it feels like to be alone, to be different, to be isolated, to be ignored.”

            She begs the mass media to: “Have some characters who don’t even want kids and enjoy a happy life nevertheless. Have someone opt for an abortion occasionally rather than turn wistful and blushing about her pregnancy as if she drank a cup of Instant Mommy, as if all the problems of the world will be solved when she has her baby.

            “The fact that more than a million abortions are performed each year in this country is a testament that not every pregnancy is a wanted one. Writers should be free to portray real life and not the sugar and spice that conservative advertisers force upon them … tell the truth.”

            She describes taking part in a T.V. talk show on women and childbearing where she was the only dissenting voice in a panel of “talking uteruses” – including a woman who, with grown children in their 30s, had an egg-donor baby at 52.

            “Each and every one of them … had one goal and one goal only in her life: to produce an infant as quickly as possible, spending whatever money she had and all of the time it might take – even going into debt and emotional quicksand if necessary.”

            Lafayette’s opinions would be unacceptable in today’s media environment. The trajectory of the book leads towards a directive to embrace a “Child Free” identity – to form groups and make friendships with others similarly situated. It’s a great idea, but my concern is that this further segregates the Child Free/Childless from mainstream society, when what is needed is mutual respect, interaction and consideration. 

            The Child Free Network she began but seems to have distanced herself from has a spotty web site that seems to have drifted from the author’s original worthy aims, degenerating into snarky commentary about “breeders.” There are articles complaining about other people’s “noisy, stinky” kids.  This is certainly disappointing. Still, the original book is an honest, interesting read to balance today’s fertility-centric media message.

                                                            ###

Award-winning, Best-selling Rhode Island Authors to Speak at Ocean State Writers Conference

            View a slide show of the event (which like the entire conference, was a smashing success) here: tp://picasaweb.google.com/Peter.Leviten/URIWriterSConferenceWritingAboutTheFamily#

  All Providence-native Priscilla Warner ever wanted was a mother “in a black sheath dress and a single strand of pearls, who could discuss the Vietnam War intelligently at cocktail parties.”

            What she got was “A whacked-out artist in army fatigues, blouses made of flour sacks, and black patent leather earth shoes.” 

            New York Times best-selling author Priscilla Warner (my sister-in-law) will be speaking about the challenges of writing about her mother (my mother-in-law), the renowned Providence artist, 80-year old Riva Leviten at the Ocean State Writing Conference to be held at the University of Rhode Island Thursday June 18 through Saturday June 20. An excerpt from her upcoming memoir ran recently in More magazine. http://www.more.com/4298/2742-a-portrait-of-the-artist/2.

            Warner will be speaking on a panel I’m moderating titled Writing and the Family, at 10:30 a.m., Saturday, June 20. She is the co-author of the New York Times best-seller, The Faith Club, in which she grappled with writing about her father’s often confusing attitude towards his family’s religion. A religious Jew, he first sent her to Providence Hebrew Day School, then, abruptly, the Quaker Lincoln School, where she was made to sing Christian hymns.

            Now out in paperback, The Faith Club garnered Warner and her co-authors a spot on The Today Show, write ups in USA Today and a world publicity tour. www.thefaithclub.com.  

              Warner will be joined in talking about the challenges of writing about, while  continuing to honor, our families by North Kingstown resident Padma Venkatraman,  author of Climbing the Stairs. The much-acclaimed novel is based on her parents’ experience in World War II era colonial India, and was named winner of the 2009 Julia Ward Howe Boston Authors Club award. The literary society is the oldest author’s club in the nation. 

              Says Venkatraman, “Most other novels about Indian Hindus tend to confuse the issue by describing customs and ignoring the spiritual truths that the religion is actually about.”   

           A research scientist with the Oceanography Center at URI, Venkatraman first considered writing the story as a memoir. “I felt that fiction would liberate my story to highlight its three most important threads – Hindu spirituality and philosophy, the debate between nonviolence and violence which took place in my family, and providing the colonial perspective on World War II. I felt that a memoir would tie me down -  as a scientist, I have a nonfiction reporting voice  I wanted to break away from, cleanly and completely.”

             Says Venkatraman, “The novel’s central question is of violence versus nonviolence. I want people who read it to see its relevance in America today, rather than merely reading the story as historical fiction set in India.”
              

         PEN-award winning writer and Providence-native Patrick Tracey, author of Stalking Irish Madness: Searching for the Roots of My Family’s Schizophrenia, agonized over writing the story of his two sisters who “dropped down the elevator shaft” of schizophrenia in early adult hood.  He feared exposing their personal struggles, but was compelled on a quest to find a cause for the illness that plagued his family for generations. He ultimately found it in Ireland’s history of oppression and starvation at the hands of the British. 

            The haunting yet uplifting memoir was chosen – among thousands – as one of the Best Books of 2008 by Slate magazine, and was recognized by the National Alliance on Mental Illness as the book most helpful to families dealing with mental illness. Tracey’s memoir received national publicity, including write-ups in USA Today and a lengthy NPR interview, which can be found at www.stalkingirishmadness.com.

(p.s. Tracey moved the audience to tears and sold out his supply of books.)

           These are just a few of the writers who will be featured at the Ocean State Writers Conference.  Many of the events are free to the public, for a full schedule and registration information see: http://www.uri.edu/summerwriting/

Nadya Suleman has had extensive plastic surgery to resemble another famous mother, Angelina Jolie. While her octuplets have turned into a national freak show and blog snark-fest, it’s not hard for me to follow her logic.

In the third issue of Exhale I discuss “Octomom” as a natural product of a deregulated fertility industry,  and highlight a memoir by another mother whose judgement was questioned. 

Creation Fixation

             Today, you have to explain your decision not to utilize the new technology if you have even the vaguest desire to have children.  Why suffer the stigma of being different in an increasingly conformist society, where being married and childless is seen as more odd than being a never-married parent, a single mother of many?

            From a front-row seat, I saw how the sexual revolution impacted my parents’ generation, who came of age and married in the fifties. It hit like a hurricane, breaking apart marriages, spawning a generation of latchkey kids, sending women to conciousness-raising groups and out into the work-force. In the same way that the pill ushered in both the sexual revolution of the sixties and the feminist resurgence of the seventies, the fertility frenzy has impacted society of the nineties and aughts; the outside of the envelope is being pushed further and further out. The business world, education system, dating conventions and even family pecking order rely heavily on the idea that the fertility industry is a safety net.  When I started a new job at 35, I was warned, off the record, not to get pregnant the first year, then brightly advised: “That’s what we have our fertility benefit for.”

But it doesn’t work for everyone; it didn’t for me. In my recent interview on Belief.net, sparked by my last month’s Exhale column, I wonder if the answer isn’t advising young women to freeze their eggs, but rather, retuning society to make it easier economically for young women to start their families at more appropriate ages: http://blog.beliefnet.com/beyondblue/2009/01/christina-gombar-an-interview.html.

The Right to Reproduce?

            Nadya’s case raises the very uncomfortable issue of whether or not having as many children as she wants, by whatever means, is as much a feminist issue as abortion rights.   In the Guardian, Jennifer Block wonders if it’s not time to “take a close, hard look at our healthcare priorities. While we have the technology and expertise to keep a 1.5-pound premie (Suleman’s tiniest) alive outside the womb, standard American maternity care is resulting in poorer and poorer outcomes for the vast majority of mothers and babies.”

http://www.guardian.co.uk/commentisfree/cifamerica/2009/feb/10/nadya-suleman-octuplets-ethics

Birthing versus Parenting

            “Any fool can have a child.” Our new president’s words, not mine – said on the campaign trail, speaking to an African American audience. Properly raising children, President Obama says, is another issue entirely.  Perhaps for their own safety, it’s a blessing that Nadya Suleman’s children will be living in a fish bowl.

In a blog post titled, “They Shoot Horses, Don’t They?” author Karen de Balbian Verster discusses her dilemma after witnessing the abuse of one of her daughter’s playmates. She also sites an alcoholic woman who boasted of abusing her dog, but succeeded in adopting a Chinese infant.    

            De Balbian Verster asks: “I wonder why we as a society allow people who are unfit parents to become parents in the first place? It’s a slippery slope, I know, but shouldn’t there be some conditions in place before one has a child? Things like another parent, mental health, financial stability? It seems like too little, too late to worry about these things after the child has been starved in the basement, burned by cigarettes, or sexually abused. But since we can’t seem to ban assault rifles, I’m afraid licensing parents must remain a futuristic concept.

http://mysite.verizon.net/kdebv/2008.12.01_arch.html

An “Unfit Mother” Reflects

             Polio survivor Anne Finger was told she was unfit to give birth: it was dangerous, she was disabled, she was unmarried. Her 1990 book, Past Due, a Story of Disability, Pregnancy and Birth tells what happened when she defied standard advice.

        After suffering polio as a toddler, Finger grew up subject to one butchering operation after another in the vain attempt to bring life back to her atrophied leg muscles. Because of her horrendous experiences with the medical establishment, when she decided to become a mother, she eschewed traditional medicine and chose midwifery, despite the fact that she was an atypical, and potentially high risk obstretric patient.  The midwife miscalculated, the labor went on too long, and her son wound up inhaling his own fecal matter. Death, or a life sentence of severe disability was predicted by the angry medical establishment that she finally reverted to.

            Despite her son’s full recovery, Finger’s trauma – first under the knife of post-polio childhood surgeries, then a well-meaning midwife unequal to the task of her  complicated delivery, and finally, the shaming of the medical establishment – scarred he.: Her thoughts, during those terrible days when her son struggled for life:  “I do know that if he dies, I will think that technology is the monstrous, inhuman, a mad scientist’s creation; and if he lives, I will think it a miracle.”

          One could as easily apply these words to the current fertility industry frenzy: “I have the places where I draw my lines about what I would and would not do; and other people … people I respect, have different lives. But I’m aware too of how social pressure can work to keep people in line: how when a technology is available it becomes harder and harder not to utilize it. If you’re over 35 and pregnant, you have to explain your decision not to have amnio, justify yourself.”

Overfertility in the Age of The Feminine Mystique

        Richard Yate’s dark 1960 novel, Revolutionary Road, is now a gripping movie starring Kate Winslet. While the narrative is one of over-fertility rather than infertility, the story throws into dramatic relief how fragile and tenuousness is this largely taken-for-granted business of birth, for the child, for the mother. How destructive, yet somehow inescapable, the issue of maternal identity – for better or in this case, for worse.

Blogs and Bits

 http://www.moretolife.co.uk

       This British site for involuntarily childless includes U.S. news, coping strategies, and personal stories. A good resource for those who wind up without.

Elaine and Austine Tracey in the 1960s

Stalking Irish Madness has been named one of the Best Books of 2008 by Slate magazine: http://www.slate.com/id/2206635/pagenum/all/

Years ago when we lived in New York city, my husband and I spent four or five hours every Sunday night delivering sandwiches to homeless men. The vast majority were Viet Nam War vets, out of work and homes because mentally ill. Most were clean, quiet, polite, grateful. A few – like the 6’3” drag queen up in Times Square – were angry, swinging at the air, arguing with unseen enemies.

“Schizophrenia,” we said to each other in whispers, gingerly extending a brown bag pre-packed with chicken salad sandwich, yogurt and an apple, which the drag queen snatched before stalking off in high heels, muttering.

Recently we travelled up to Brookline Mass, where our friend Pat Tracey gave a reading to promote his book, Stalking Irish Madness: Searching for the Roots of my Family’s Schizophrenia. All four of his sisters — including the two affected by with the mental illness, were there.

I was struck by how normal they seemed. When one has a chronic condition, whether physical, mental, or a combination of both, it’s easy to fall into black and white thinking – the “normals” and the afflicted.

Eighty percent of chronic illnesses are invisible, and you’d be hard put to sort out at first glance which two of the four Tracey sisters were afflicted. Michelle, who has bi-polar schizo-affective disorder,  is as effusive and articulate as her twin Seanna, who is “normal.” Austine, once catatonic, merely appeared shy and sweet. There were no verbal histrionics, no talking to invisible people, no bursts of anger.

One in a hundred people suffer from the chronic illness schizophrenia. That’s five million people in America alone. So why is this genetic illness so stigamatized?

Staking Irish Madness has been named one of 2008’s Best Books by Slate magazine: http://www.slate.com/id/2206635/pagenum/all/

Searching for the Roots of His Family’s Schizophrenia

             A warm spring day, April 1979, broadcast journalism class at the University of Rhode Island.  Dr. Snodgrass, our instructor mutters, “Pat Tracey, not here again. That’s no surprise,” in his bizzarrely deep, newscasterly voice.  The professor was normally not sarcastic, but on the day our projects were due, he may have felt a small amount of disdain his right.

But it is characteristic of life that the one time Dr. Snodgrass took a liberty, it was unwarranted.

“His mother died,” piped a hippy girl. “A stroke.” Everyone in class, but especially the girls, emitted sounds of distressed sympathy. It seems everyone knew Pat but me.        

            It wasn’t until reading Pat’s book, Stalking Irish Madness: Searching for the Roots of My Family’s Schizophrenia, nearly 30 years later, that I learned his mother’s stroke was no random event. 

       His memoir, published by Bantam August 26, proves that, in the author’s words, “Real tragedy may be the best training ground for a memoirist.  Madness is a universal concern. It may be the deepest fear for all of us, because more than anything else we are our minds. We are a family that has experienced in a first hand way what few feel free to speak of.”

          Stalking Irish Madness has been picked by the association of independent book shop owners for their Indie Next List of Great Reads From Booksellers You Trust.