Reality Chick

This week on  SilentSorority.com I tell how a trip to Russia cured my tunnel vision:

 

I consider myself less a survivor of infertility, than of the fertility industry. 

Let me explain. As far as I know, I wasn’t infertile during my childbearing years. But when I was married and 30 and ready to start my family, I came down with a life-upending chronic illness. You realize you’re not parent material when you can’t recognize a box of Cheerios, forget how to use a phone, and unintentionally set fires in your own home. And, oh yes, I was taking experimental meds that were in no way pregnancy friendly.

Before that, on the scale of wanting a child (1 being “No Way!” and 10 being “I Have No Purpose If I Don’t Have a Child“), most of the time I was probably a four: “If it Happens, it Happens” was my philosophy. I’d already had a premature taste of maternity, when, at 13, my mother had a fourth child and I was designated chief babysitter. Unlike many “infertiles” and even new Moms, I knew how hard the job was, and how important it was to be fully there for it.
   
For several years, as I worked to get well and fully employed again, we were a happy family of two. In my mid-thirties, I succumbed to societal pressures – some might say enablers — a generous fertility benefit at my job and a clinic just down the street.  No doctor red-flagged my health condition, but as I walked down to the little clinic at the bottom of the hill in my picturesque suburban New York village, I knew I was giving myself a toxic dose just as surely as if I were scoring smack on the Lower East Side. I wound up seriously disabled after a brain infection. This time it took me years, not months, to read, write, drive and cook safely. End of Act I, I was 38.
 
If my husband and I’d stayed in New York, I’m certain further fertility treatments would never have crossed my mind. Because of my health, I had to be realistic. Rather than being preoccupied with my fertility, I was forced to figure out how to accommodate this new semi-sick person who’d invaded my once-healthy body.  Instead of grieving a baby, I grieved the sturdy, dynamic self I’d lost to illness. I was so overwhelmed by financial challenges, I often thanked God I didn’t have a child to provide for. But when we moved to Rhode Island, we were a complete anomaly as a childless couple.

I tapped into the last few thousand dollars in my company’s benefits piggy bank.  “You have the numbers of a 25 year old!” My doctor enthused.  
   
This time I wasn’t working full time, so I didn’t get sick. I didn’t get pregnant either. I was 44.

I was never desperate until this final IVF frenzy. But in order to continue gambling with my mental, physical and emotional health, I had to define my future life without children in starkly negative terms. Terms that that were just plain false. But stuck in the fertility tunnel, I developed tunnel vision. Years later, I recognize it as a kind of mental illness.

How did I escape the tunnel? I’ve always come alive with travel. In 2006, I won a fellowship to attend a writers’ conference in St. Petersburg, Russia.  While I’d once considered traveling to Russia to bring home a child (a plan nixed because of my health and financials) I instead brought back myself. The self I’d pushed aside in my quest to become a parent like everyone else, that I couldn’t even see from inside the tunnel.

Once in Russia, I was no longer the semi-sick, middle-aged childless, purposeless person I felt at home, but someone who plunged easily into international life, knew how to get by in a strange city, picked up a foreign language in days. I was at one with the 15-year old exchange student who’d been so shy speaking English she often didn’t open her mouth all day at school, but when forced to speak only in French felt instantly at home in a foreign country.  On the streets of St. Petersburg I was taken for European, and when I explained I was American, I hastened to add, a New Yorker.

Upon returning to Rhode Island, it dawned on me I might be in the wrong place, pursuing the wrong goals. I began traveling more often back to New York, and realized how much of myself I’d left behind there. I have a history there that means something profound to me.  My husband and I met in college in November of ‘81 and moved to the city June ’82. New York was the foundation not just of our adult lives, but our relationship. It is our family.
   
We went to New York in the middle of a terrible recession – worse than the current one – found work in the fields of our choice against all predictions, paid all our bills on our own, retracing the footsteps of our immigrant tenement-dwelling grandparents as we lived as minorities in minority neighborhoods that were often unpleasant, even dangerous.  I worked in the World Trade Center for all the big firms making news today; my husband was at the center of the dot.com boom and bust.
   
Having children, being part of the direct genetic chain of generations, is one way to be in the stream of life. It was easy to see myself as a dud in those terms.  But, being at the center of history, I realize, merely walking the streets of a great city like St. Petersburg or New York, is another way of feeling connected to the chain of of history. Realizing this restores the parts of me that that our fertility-frenzied culture said I lacked.    

http://blog.silentsorority.com/

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

My short memoir on  life at AIG named runner-up in the Manhattan Media Contest. Read it here:

 

                                    Elegy for an Organization

“In the federal trial, AIG alleges that ousted CEO Maurice ‘Hank’ Greenberg left AIG in 2005 with 290 million shares of illegally seized stock, since sold for an estimated $4.3 billion …” 

 “A consortium led by Kumho Investment Bank has taken over the headquarters …”

 

 

I could tell you about AIG.

That I was one of the no-name people, not the elites who screwed up.

That I made $20,000 a year.

That my office was on the narrow crooked end of Wall Street.

Where on the most glorious sunny day, it was dusk out my manager’s window.

That my own office was three mustard-colored walls and one grey, free-standing partition.

 

I could tell you that I was terrified.

Of the big buildings, the air of mystery, the sub-CIA cowboy culture.

Of the numbers I didn’t understand.

I could tell you that our P.R. policy was Don’t Talk to the Press.

That the building foundations shook when USA Today named our chief, Hank, the  seventh highest-paid CEO in the nation, or was it world?

I could tell you that not only in the company, but all over Wall Street, everyone knew that A.I.G. meant All Is Greenberg.

I could tell you that if Spitzer hadn’t forced Hank out, we wouldn’t be in this mess.

That AIG’s been brain-dead ever since.

I could tell you I have a soft-spot for Hank.

 

I could tell you that this company was a family when I had none.

The year people died, went mad, out of business, into rehab, into nursing homes.

I could tell you that for years I ignored the half page ads in the Help Wanteds

With the tall letters that said WALL STREET.

That I only answered AIG’s because it didn’t.

That when I learned it was Wall Street and didn’t answer their calls.

That they kept calling.

That my boss at AIG was the first man I worked for who didn’t harass me.

That he was a blue collar New Jersey newsman.

That his staff called him Bambi behind his back.

 

I could tell you that this was the year the stock market dropped.

That a rising tide lifts all boats, but hurricanes stir up gold.

I could tell you I made the best friends of my life there.

That we drank vodka in the morning but worked through the night.

That AIG’s unofficial motto was “We shall pay no claim before its time.”

That it didn’t need a diversity program, its workers came from over the world.

Its interns from housing projects.

 

I could tell you we were proud of the sub-CIA cowboy culture.

 That I came to have more respect for financial people than writers.

That the Ivy arts grads I roomed with after college couldn’t hack the real world.

That they left their jobs and lived off their parents.

I could tell you that people on Wall Street don’t take money from their families.

They support them.

That AIG didn’t care about pedigrees.

Just work.

 

I could tell you that on my floor Jews and Arabs were friends.

            That there was a transsexual, a platinum punk rocker, and a girl with purple hair, (me.)

I could tell you all about the married closet queen and his 400-pound secretary.

 

I could tell you how I learned to use a personal computer there.

That on the computer cube wall hung the Leviathan company chart.

For internal use only.

A complex web of holding companies, limited partnerships, and wholly-owned subsidiaries.

Chilean pension funds, Indonesian customs bonds anyone?

Four hundred boxes, cross-linked, to outsmart the auditors.

 

I could tell you that when Hank made a joke people were afraid to laugh.

That his oldest son Jeffrey was overworked.

That his second son Evan looked like a movie star.

That he fired both sons, or they left of their own volition.

And became CEOs elsewhere.

 

I could tell you that when Hank entered a party, he scattered crowds like a smoke bomb.

That he was five foot six, or looked it.

That he was 60 and looked 40.

That the one time my work brought me within feet of him, he winked.

 

I could tell you that I remember what I wore that day and what it cost.

That I walked home over the Brooklyn Bridge.

 

I could tell you that my whole life flowed from that building.

That it split me in two and broke up my home.

That when I worked there, I moved to a seedy hotel.

That AIG was more home than hotel.

That it was both prison and refuge.

           

I could tell you that I couldn’t afford to leave the hotel till I got a better job.

That I left AIG after 18 months for a $10,000 raise.

That I’d have stayed for $5,000.

I could tell you that I understood why AIG was cheap.

That by the time I left I understood numbers.

About shareholder value.

About managing risk.

I could tell you that AIG wasn’t like other Wall Street Casinos.

 

I could tell you that once a week Hank went through his rolodex to call someone in.           

And rip his face off.

That I wasn’t important enough for this to ever happen to me.

That the old Chinese waiters were equity millionaires.

That the upper echelons lived in a culture of fear.

            That they worked with Golden Handcuffs.

AKA Deferred Compensation.

AKA Holding on for the Retirement Bonus.

 

Now the disintegrating company’s news Googles into my inbox, like jagged rocks down an avalanche.

I could tell you that when Spitzer kicked Greenberg out, he parted the golden pot from the people who’d earned it.

Or were promised it.

That none of this was on paper.

All on trust.

I could tell you that most likely the company chart, with its 400 cross-linked boxes, made this perfectly legal.

Is life ever fair?

 

I could tell you more.

I could tell you all policemen are pigs, all soldiers murderers, all men are rapists and all Wall Street workers evil.

 Or I could tell you that Hank Greenberg gave me a job when no one else would.

That the company saved my life.

Or I could tell you I left my soul back there, locked up in a grey metal desk drawer.

 http://www.nypress.com/article-20328-non-fiction-contest-runner-up-elegy-for-an-organization.html

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.

 

 

 

 

 

 

 

 

 

Above Right: Revelers on the Deck of the Ocean Mist in Matunuck, Rhode Island.

When I moved to Rhode Island six years ago, my old college roommate  introduced me to her friends: “This is Tina, don’t mind her, she’s Teatotal.” Because I limited myself to one glass of champagne, and only ever drank with food. But here, pregnant women openly drink. Scotch. In the morning. I know many high functioning, middle-aged, career-successful people who put in a couple of hours at their regular bar nightly, and return for Saturday and Sunday lunch to drink the afternoon away.
 
Because I’m not a heavy drinker, it’s made it harder than usual to segue from an urban-work culture of New York, where people are addicted to jobs, gourmet food and psychotherapy, to the resort area where booze serves all three functions: nutrition, occupation, and all-purpose soul-soother and stress-buster. A  steep recession reigns here in the Ocean State and Rhode Island has one of the highest unemployment rates in the country. But you’d never know this from looking at the three-deep crowd at the bars of the local restaurants. In a way it’s heartening to see middle-aged and elderly people enjoy themselves and socialize like teenagers.

 

Read more at the great new drinking site:  http://www.drinkingdiaries.com/

 

 

 

 

 

 

 

 

 

 

 

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/

 Was It All a Lie?

The disintegrating company’s news Googles into my inbox like jagged rocks tumbling down an avalanche. The plunging stock price, the sell-offs of prized divisions and landmark buildings. Witnessing the end of my old employer is like attending the funeral of a highly dysfunctional, but much beloved family member.

Reading the outrage of the press lynch-mob, however justified, is like watching distant relatives and far-removed acquaintances — who didn’t even know the deceased yet lived off his largess — spit on his coffin. 

The quickest way to isolate yourself socially is to say that you worked for AIG and that it was a great company. “This never would have happened,” I told people with conviction last fall, “If Spitzer hadn’t forced Hank Greenberg out. It’s been brain-dead ever since, it was a one-man company.” 

In ousting the CEO of nearly four decades in 2006,, Eliot Spitzer did exactly what George W. Bush did in Iraq. Launched an attack against a regime that had long played by its own rules, decided to knock out a leader without investigating what the consequences might be. Without knowing enough about how the financial world works to foresee the disastrous outcome. You can’t take out a leader without a secession plan. In acting prematurely and without foresight, Spitzer made things infinitely worse for the entire world.

All Is Greenberg

“You’ve got a company, AIG, which used to be just a regular old insurance company,” President Obama explained on his famous Tonight Show appearance. “Then they decided–some smart person decided–let’s put a hedge fund on top of the insurance company and let’s sell these derivative products to banks all around the world.”

But the President was wrong. AIG has never been an ordinary insurance company. As Ron  Shelp wrote in Fallen Giant: The Amazing Story of Hank Greenberg and the History of AIG, within the company and among Wall Street analysts, A.I.G. has always been an acronym for All Is Greenberg.  John Wiley put out the book in late 2006, soon after Mr. Greenberg was forced from the helm.  I recommend the just-released updated version  as a backgrounder for anyone wondering how a company they may not have heard of until last fall came to be so powerful.

 AIG was an invisible country, with its own rules. I’m not saying that was t a right or good thing, but it was the reality that the average person didn’t know, not because the information was hidden, but because they didn’t want to.

http://www.amazon.com/Fallen-Giant-Amazing-Greenberg-History/dp/047191696X

P.S. — To those working in the business, the blow-up wasn’t completely unanticipated. In 2002 I was writing of the threat of a Hedge Fund blow-up in the London Review of Books.  In a piece titled, “Everybody Knows” speaking of the Long Term Capital Management bail-out of 1998, “It will happen again, and there will be pain.”

 http://www.christinagombar.com/pdf/everyone-knows.pdf

Related links:  http://www.christinagombar.com/doc.php?doc=war-zone&p=1

 http://www.christinagombar.com/doc.php?doc=the-pink-dress&p=1

When we think of “Irish Madness,” it’s usually a happy phenomenon — the wild celebrations of St. Patrick’s Day.  A new book tells a darker story.

Irish Catholics have long been known for taking pride in their large broods. But fear of passing on genetically inherited schizophrenia stopped this author from carrying on that tradition.  

   “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.   ”But fear of passing on my family’s disease made it impossible.”

Mr. Tracey talks to me about the difficulty of dating women rapidly running out of eggs while banking a faulty gene pool:

http://www.exhalezine.com/ISSUE4March/gombarissue4.html

In other madness, I write about a 70-year old woman who recently gave birth in India. Really! Also check out our wonderful one-on-one with Elizabeth McCracken, author of An Exact Replica of a Figment of My Imagination.