I am a ghost. You may have seen me in the supermarket, on a park bench, standing in line next to you at the library. I walk beside you. But I am not really in the world.
I am still on the organizational chart at the company where I used to work, but someone else sits at my desk. My name still appears in the address books of friends, though most no longer call. If I publish an article, lawyers advise, I must use a pseudonym and refuse payment, though my financial situation is dire. Occasionally, a van with tinted windows parks across the street and runs a camera on my house, or trails me to the supermarket and reports back to my employer. But most of the time I am invisible.
They say that ghosts wreak havoc because the spirits don’t understand that they are dead. This is how I feel. I have had some version of Chronic Fatigue and Immune Dysfunction Syndrome, or CFIDS since I was 31, but it wasn’t until three years ago, when I was 39, that it caused me to drop out of the world — leave my job, shut down my social life, put all plans for the future on hold, change from living as one type of being to living as another entirely.
When that devastating attack came, I didn’t quite understand what had happened. Like a spirit with unfinished business, I continued to knock around, angrily attempting to do the normal things, insisting on my right to be in the world. Remembering those first months, I have an image of a headless horseman, wandering the aisles of the supermarket, furious that they’d rearranged the shelves, were hiding things from me, wondering when someone had broken into my car and changed the control panel, why the world suddenly moved up ten speeds.
In my case, the overwhelming and most incapacitating symptom of the illness is brain dysfunction. When I get sick, a vein in the back of my neck seems to constrict, something seems to invade and inflame my brain and central nervous system, and everything freezes, then crashes, like an old, overloaded computer. In this state, I used to get up, dress, drive myself to the train station, board and settle in for a half hour of rest, congratulating myself for simply getting myself out the door one more day. I shakily navigated Grand Central Station, weakly gathered my food, and walked the four blocks to work. I sat at meetings and at my desk, in makeup and full business attire, with the appearance of professionalism, but the intelligence of a department store dummy.
Even after I couldn’t go in to work anymore, I would take advantage of small bursts of physical energy, or simply push myself, as I had been pushing myself out the door to work for the seven years since I first started to change, and ride the bicycle at my health club. Though it took me three tries to find the health club, a short simple drive from my home. But I was sick for many years before I got to that stage.
People Don’t Believe in Us
Most people don’t believe in us ghosts, and I understand why. For many years it was hard for me to admit or even register my symptoms; they came on and increased so insidiously. During my initial attack of Epstein-Barr, which is often but not always associated with the onset of CFIDS, my nice, old Jewish doctor said, “Swollen glands, mono? That’s nothing! I used to get that in med school. Stay home! Have a baby! Take it easy!”
The problem with diagnosing the onset of CFIDS is that the initial symptoms are often the same signs of stress and fatigue everyone has– tiredness, mental fog, headaches, irritable nerves, fevers, a feeling of general heaviness — in fact, just an extreme version of life itself. The difference is, I used to be able to push through the fatigue to resume an energetic state. Now if I do that everything gets worse. As my body demands I slow down, I keep commanding it to move. An intense distress, both physical and emotional, descends as the virus — or whatever it is — takes over. I know I am ill, though apart from the fever, I can’t locate where the problem lies, because it’s in the nerves, the brain, the registry system itself.
This neurological vulnerability is the aftermath of a brain infection I well remember suffering, but which was dismissed as “yuppie flu.” Later, MRIs and other brain scans showed up lesions; a radiologist who didn’t know CFIDS from measles deduced from my X-ray that I’d had encephalitis. Blood tests show up irregularities, elevated antibodies to the Herpes VI virus, which is also associated with Multiple Sclerosis. I have tried antiviral drugs, drugs taken by epileptics and MS patients; I try every new and improved anti-depressant that comes on the market. I make use of yoga, meditation, Reiki healing, acupuncture, acupressure, massage, holistic medicine, Aryuvedic medicine, elimination diets, vitamin and mineral supplements, organic living, religion and psychotherapy. Everything helps incrementally. Nothing has gotten rid of it.
It is tempting to believe that ghosts deserve their fates, that they are simply suffering for the sins of their pasts — the greater the previous plunder of our bodies’ natural resources, the longer the stay in the purgatory of ghost life. I used to work a tough, management job on Wall Street, and then do other writing until two a.m. I lived in a small space, literally and figuratively – not enough light, leisure, freedom, spiritual sustenance, sleep, fresh air, or exercise. I didn’t know I was doing anything to harm myself; I thought I was paying my dues.
When I was young, I enjoyed an excess of energy — I used to annoy people, with my insistence on incessant activity — talking, running, biking, swimming, working, socializing. But I seem to have overspent my energy, splurged it foolishly, thinking the fountain would never run dry. Now I must be parsimonious until the wellspring naturally, miraculously replenishes itself.Ghosts must live by new rules from their previous, Normal selves.
Over the course of many years of trial and error, I’ve learned to counter everything I ever taught myself. Exercising discipline is often counterproductive for ghosts. While I once ignored fatigue and other warning signs of strain, now I’m forced to take heed. I know that pushing on to complete a task, or series of tasks, when I’m already tired will lead to further disability and perhaps a car accident. In order to do anything at all tomorrow, I may have to stop myself from doing all I’d like today.Ghosts must treat themselves like newborn babies, eating nourishing meals at set hours whether they’re hungry or not, resting after eating or any exertion. Like any other kind of child care, it can be boring. In order to avoid days of serious as opposed to moderate or minimal illness, ghosts have to stop at the first sign of fever, fatigue, mental confusion, or even emotional upset.
Yet, it is not as if we ghosts do nothing at all — it is more that we exist on another plane, and run on an entirely different voltage from our previous, Normal selves. We are not so much sick all the time, but healthy, or at least functional, within very restricted limits. In other words, we do things only when we feel like it. (Ghosts are notoriously capricious.) This is probably at the root of why people see us, but don’t believe in us.Ghosts are often ashamed of being what they are. It is embarrassing to change so drastically, hard to acknowledge loss of mental functioning and emotional equilibrium.
Because on our different energy current, these things are always in a state of flux, almost as if we were starting to break apart — something that’s only supposed to happen after we die. Ghosts retain some of their former mental capacity, but lose others as they metamorphose into the next stage. Tests show my IQ is down to 77, little more than half what it once was. While I can still interpret a metaphor or describe a painting, I cannot remember a list of six words dictated to me, follow a set of simple instructions, or figure out a puzzle. I can no longer execute the complicated mental pyrotechnics of my last financial writing job, no more than my body can tolerate the strain of commuting. I read and write at a small fraction of my Normal speed and comprehension.
I recently took a test for an online, work-at-home news digest writing job; I could only finish two of the five stories in the time allotted, and did those badly.A ghost might have to do a simple budget over six or seven times because his disintegrating ghost-brain can no longer handle basic math. (Are these skills irrelevant in the next stage?) Some ghosts I know can read newspaper articles but can’t follow the plot of a novel or film. Some ghosts I know can’t read at all.Conventional jobs are often incompatible with the ghost state, though most of us fight against that truth for as long as we can. I have been out on disability for six years now, twice as long as I held my last job. Without a career, I lack an identity. To be idle is to be worthless — this is the message I get from Normals. No job? No kids? What is the point of you?
When I first went out sick, I lived in suburban New York, where my local grocery is run by Croatian immigrants. The father worked a seven-to-three shift at a factory, then came home and ran the shop. When I tried to explain why I was home, he seemed personally disappointed: “I have people on my staff like that,” he said sadly. “I don’t understand. They stay out for a week, a month …”
I haven’t figured out how to tell him I’m a ghost now, and that jobs aren’t always part of the ghost life. Before, when he used to see me rushing in at 8:30, having worked till six or seven o’clock, he’d say, “You’re so good. I hope your husband appreciates you — you do so much.”Ghosts hate not being part of the world. It is conceivable that ghosts could work from home, following the whims of their restless incarnations, that might, for example, dictate the hours of three to eight p.m. the prime working hours, rather than nine to five. But it is too much trouble for companies to deal with ghosts on their own terms. They miss us and our contributions at first, but they forget, they move on.We are trapped in a world for which we are no longer suited — still alive, but cramped by poverty and disability, and rules made for Normals. Ghost Losses
One of the worst things about the ghost life is the isolation.
“You’re not really sick,” declared a former friend, a high level executive who attends law school full time and sees her baby son two hours a week. “Maybe some day you’ll decide to go back to work …”
Said another, “Mary had Epstein-Barr, too, but she has it under control, she has to, with those kids …” Despite the fact that my own life, as she well knows, has been thrown into complete personal and financial disarray by this. I cannot afford to be sick any more than her friend Mary can.
It is the case with many ghosts that people stop believing in them — their friends, their families. I recently frightened my old boss by calling her on the phone. Don’t be scared, I said, I’m just a ghost. But I could see my intrusion, this declaration of my continued existence, albeit in changed form, was unwelcome. There are strict boundaries between the world of Normals — which I can still observe and understand, and the ghost world, which is invisible to them, and feared.
The spouses of ghosts see themselves as bereaved. I have many ghost friends whose spouses stopped believing in them, and left them for a Normal. Because we are invisible, it’s hard for a ghost to stand at the sidelines, rejoicing in others’ good fortune, pay the constant tributes the Normals seem to demand for reproduction, for career success, for enduring marriages. At weddings my cousins look at me oddly. Why haven’t you moved on in life? Published your next book? Had a child? It’s too complicated for polite conversation.
Saying you have Chronic Fatigue Syndrome is like saying you were raped. You are the one who is immediately suspect. Because if it happened to you, it could happen to them, and they don’t want to think about that. Likewise there are no visible marks. If you lived to survive, then you must not have really suffered, you must be guilty, you must have brought it on yourself. If you’re still alive and semi-functional, if you’re still trying to put on a good face, then who’s to say anything really happened to you? Unbelieving, puzzled, their eyes and attention rest on me less and less. I am an enigma not worth solving. I feel my apparition grow a shade lighter.
Ghosts lose the intermediate shades between extreme pleasantness and passivity and extreme irritability and anger. The seeming passivity and pleasantness are a result of letting go of the pettier concerns that consumed our former, Normal selves. The anger and irritability are an outgrowth of constantly feeling ill and out of sorts, stressed and desperate. You are angry at an illness without a cure, or even, sometimes, a central symptom.Though ghosts lose much of their physical stamina and mental acuity, they often develop a compensatory sense of heightened awareness and perception. They do not suffer fools gladly. I have developed an allergy to certain people — needy, whining, demanding, and especially overbearing and pushy women.
Like any other source of stress, these must be eliminated for my own self-protection.Because I felt useless in my ghost state during my first year home on disability, because I didn’t really understand how I had changed, I thrashed around for other ways to be useful besides work. Instead of figuring out how to adjust to being a ghost, I filled the most urgent need I saw — I became a “wife” to my girlfriends. I listened to tales of their daily struggles, I made sympathetic noises, I offered advice to take better care of themselves, lest they suffer my fate. But eventually, this stratagem ran out of gas.
My friends and I were together in a struggle against life and time– the long struggle to earn and save enough to buy a home, then the struggle for motherhood. To my friends, my physical collapse looked like simply giving up, a betrayal of feminism, even. They looked at me not working and saw self-indulgence.Within two years, two of my best friendships ended, friendships that I considered enduring and deep turned out to have been built on foundations of sand. The gaps between my ghost life and their Normal life became too vast.
As with any other unpleasant or disturbing experience, it is easier to minimize the ghost state by denying it. After I was forced home, I couldn’t bring myself to tell anyone, to name this disease I didn’t want. This was easy because I’ve never looked sick. Many people with CFIDS actually look better than Normals, as if, like spirits, we have reclaimed our essential selves. We get more rest, eat better, tend not to drink alcohol or caffeine, or smoke. (Our unstable ghost bodies tolerate less and less as time goes on.) We keep early hours and don’t strain ourselves. If we had to stop working, we probably look better than when we did. We appear as deceased loved ones do in dreams, or people are said to appear in glimpses of the next world.
I can understand that to others, CFIDS and the similarly mysterious illnesses of Lyme disease and Fibromyalgia just look like a bad attitude, or depression. If you have one of these conditions and can still work, chances are you are so tired you don’t have the energy for the normal office chit-chat. Ghosts can’t waste their limited energy on enthusiasm; they need all their scant resources for the task at hand. A woman at my last job appeared withdrawn before she crashed and went out for good. (There were, including me, four cases of CFIDS, all women, in my then sixty-person department.) Even to me, this woman seemed merely unhappy, overloaded, a working mother with a long commute. I must have appeared the same, dragging into work ill for several months, going in and out for several week stretches before I bottomed out.
In his memoir, “Intoxicated by My Illness,” the late writer and critic Anatole Broyard said, “We must develop a style for being ill.” He recommended all cancer patients buy a new wardrobe of casual, yet elegant clothes.When I became a ghost, I became a blonde. When I first went home sick, I knew I would be home for a few months. Free to diverge from the seemingly mandatory short dark hair style of my office, I gave the go ahead for an auburn shade, which came out a jolting firecracker red, surprising even the girls in the salon. I looked at my reflection with alarm.
Yet my altered appearance, though undesired, reflected the disorienting transformation of my mind and body.A few months later it became a light auburn with blonde streaks. This incarnation seemed to suit my changed self. I tried going back to brunette again, but looking in the mirror, the gap between the dark-haired, young, strong person I used to be, and this changed person I had become was too depressing. Lighter hair projected a more accurate, if more fragile persona, but also encouraged a more cheerful state of mind, which seemed contagious. Don’t take me seriously, and I won’t take you seriously.
Beckoned by my hair, people turn their heads, shop attendants wait on me first — a tremendous advantage for a person who’s been known to collapse while standing on line. In this way I defy the invisibility of my ghost state.But being blonde can be misleading. Blondes have more fun, and ghosts aren’t supposed to enjoy themselves. People may mistake me for an idle, rich housewife, and it is hard not to internalize this fantasy, despite the state of my balance sheet. Seeing is believing, however, and Normals resent the illusion, resent my apparent leisure, not seeing that, though I lack their worries of children and jobs, I have a host of strange and difficult obstacles. To say nothing of disappointments and losses.
Voices from the ghost world are relatively rare, and somewhat unreliable. There are a dearth of good memoirists. One of the best is Floyd Skloot, author of The Night Side and In the Shadow of Memory. He is a poet, a fine literary writer, who frames his insights elliptically around well thought out themes. I envy the fact that he seems so sure of himself and his position, his status as ghost; he gives absolutely no time to detractors. But his illness descended on him abruptly. He went from being a marathon runner to a cripple in a matter of days. I went down by degrees. Hit with succeeding blows of illness, like a prize fighter I kept getting up off that mat and coming back. It was harder for me to tell when I actually crossed over.
Skloot doesn’t seem as angry as I am to find himself a ghost. He skims over the fact that the illness ended his first marriage. He doesn’t seem afraid of the future the way I am. His illnesses descended on him when he was in his forties, had already established family and career. Mine hit me at 30, when I was struggling to start a family that never materialized; my continuing struggle for work, to this end, further compromising my health. Skloot seems to have adjusted better, living far out in the wilds of Oregon. Perched until very recently within view of the Manhattan skyline, I’ve been struggling to get back in the world like a moth beating at a screen door.
In her memoir, The Alchemy of Illness, Kat Duff combines traditional and New Age philosophy, history and spirituality in her uplifting analysis of the illness experience. In the last chapters, the author attributes her illness to a sort of inherited bad karma, retribution for the fact that her ancestors confiscated Indian lands and may have committed atrocities. What does that say for the many minority women I see crowding my doctor’s office? The young Orthodox Jewish women? Whose bad karma are they paying back?
There are a plethora of books by non-ghosts offering bogus cures. Dr. Bernie Siegel says that it is in your power to heal yourself, that it is only a matter of life style change, of communicating your needs to others. Although from the first serious attack at 31 I knew I would have to change my life, and began to accept certain limitations, others couldn’t, or wouldn’t. In one book on “coping” the author talks about stress management, but not about how to make a living if your body can’t handle a normal work load. “Ultimately, it’s not important if you can’t meet a certain work deadline.” I wonder what world he lives in?
It took two and a half years for me to accept the fact that I was a ghost. I did something I’d avoided before, sought out the company of other ghosts. I traveled to Washington to lobby Congress for CFIDS research funds. Seeing a large room full of people, all damaged in slightly different ways, brought to mind the robots marked for an orgy of public destruction in the film Artificial Intelligence. Some of the robots were little more than joints and wires, while others seemed at first glance fine. One robot had a stunningly beautiful, perfectly intact face — Juliet Binoche’s — but her neck was a shredded metal skeleton. Likewise at the CFIDS gathering.
My lobbying partner could only make her way with a sturdy metal cane. She holds an MBA from the University of Chicago, held high level government posts and ran her own business. After she got sick she was reduced to living in her car, then women’s shelters. She is now in public assisted housing, and has so much neurological damage she has great difficulty even speaking. Another woman’s lean contours told me she was well enough to exercise. Thirty seconds into our conversation, her expression told me she had forgot what I had just told her.
The only poster-girl for CFIDS is Laura Hillenbrand, author of the best selling Sea biscuit: An American Legend,. She lives in D.C., and I met her father, who lobbied in her stead.Laura has done a great deal to put a different face on the illness, but I have mixed feelings about this. Like her, I turned to writing as my last hope for an income source – unlike her, I have not yet sold a bestseller. When I tell people I write, their immediate response is: Well you should be able to make a lot of money from that, citing the Seabiscuit girl.
The vast majority of ghosts live in obscurity and financial disarray. I would love to read articles about how ordinary people struggle, but the media has the mistaken idea that I am interested in celebrities.Money is the great determining factor in quality of life and medical treatment, for ghosts and anyone else with a chronic illness. I have met girls in my doctor’s waiting room who live and work “on the street.” Others are pampered housewives.
My friend Hal, a former high earning sales executive, lost his wife, who wiped out his 401K, and lives on Social Security and what he earns from one night a week of bar tending, which costs him three days of recovery time. If he can work two nights, he can afford the six hundred dollars for experimental drugs that seem to help. But this extra work itself floors him; it is a Catch-22.I am luckier than some ghosts, unluckier than others whose families recognize the gravity of their situations.
A few years ago, I was the object of a temper tantrum by a relative who was furious I couldn’t make a Bar Mitzvah; I had told her I was attending a weekend retreat led by a doctor who specialized in my illness. I was lucky to get in, it was tremendously helpful, people traveled from all over the world to be there. Hundreds of others attended her son’s event, I’d sent my apologies. Still, she took offense.
I still look for a way to be in the world as a ghost. If I don’t inform people of my condition, they take me for well, which eventually leads to misunderstanding and disappointment. If I decide to eschew makeup and hair dye, and become one of these people who bore you with a litany of their health complaints — no, I won’t even go there. Yet attempting to be happy, appreciating whatever I do have, leads my overs tressed contemporaries to the conclusion that I’m enjoying myself and my condition.
And so I remain a ghost, in limbo. One part of my life is over — jobs, friends, goals — and the other hasn’t started yet, or at least, has not started in the way I expected it to, with a full recovery and return to my old routine of wage-earning work and activity.When the country underwent a change, experienced the shock and shame of damage unexpectedly inflicted, found itself in a new era of strange war, of unpredictability and fear, I felt oddly prepared. New York was a ghost town, people were afraid of it, it was sick and wounded and dangerous. When I went down to where I used to work, to Ground Zero at night, I looked up in the sky and thought I could feel the other ghosts close at hand. What might they tell us if we could hear them?