Reality Chick

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 …” 

 

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

 

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.

Cut Out of Each Other's Lives

 

 

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

 

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

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

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

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

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

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

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

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

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

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

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

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

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

Ours, apparently, had run out.  ~~~

I have Chronic Fatigue and Immune Dysfunction Syndrome. Please hold the applause.

In the summer of 1991, an interloper fooled the bouncers guarding my otherwise -functional immune system, ducked under the velvet ropes and broke into my DNA. The miscreant might have been Lyme, Epstein-Barr, Herpes VI, or any combination of those viruses, in cahoots with some as-yet-unidentified evil-doer. The vandals left me with drastically reduced mental and physical functioning, a state eventually diagnosed as Chronic Fatigue and Immune Dysfunction Syndrome.

 

I’m a different person than the exuberant young New Yorker I was before, the person with who could work out twenty hours a week on top of a demanding job, run around town with my husband and friends and still spend a couple of hours at night writing short stories.

 

Having CFIDS means that over the years I’ve had to quit or cut down on most of these activities. It also means I’ve grown used to being labeled a hypochondriac, mentally ill, an alcoholic, and a drug addict.

 

What’s it like? Imagine looking at this page and not being able to read it, to see only bugs jumping around. Or peering into the kitchen cabinet and not recognizing the box of Cheerios —you see the yellow box, but you don’t know what it’s for. Or driving a familiar route and suddenly not knowing where you are or how to use the instruments on the dashboard panel.

 

But it’s not always this bad, not every day. When people think “disabled” they think of someone flat-out in bed, confined to a wheelchair. Lots of people with this thing spend a good part of their day on the couch. I had to, when I was first sent home from work. I don’t now. After ten years, I know what to eat and not to eat, how to enforce “down time,” that brain work is a morning-only thing, and sometimes must be banned all day. So no reading, writing, better keep away from the check book or there’ll be hell to pay later, be really careful driving — don’t want that premium going up again! Don’t go into any strange stores, it can only end in tears.

 

How do we treat it? With traditional medicine. And lots of Snake Oil.