Dream Catcher: A Memoir (69 page)

S
OMETIME DURING MY SECOND YEAR
of work at the recruiting firm I caught the flu. It didn’t go away. I kept trying to go back to work, and my boss, Jack Vernon, a truly decent, kind human being, kept sending me home. Over the next few months, I developed what I called my 100-degree rule: I stayed at my desk and worked as best I could until my temperature reached 101, then I’d give up and go home. My doctor first suspected lupus or multiple sclerosis. I could tell by the tests he ordered, and then he’d tell me when it was ruled out. My blood tests came back very out of whack, white cells in the stratosphere, red cells down the drain, and so on. Something was obviously wrong, but they couldn’t figure out what. Meanwhile, I was exhausted, fevered, had constant diarrhea, and felt as if I’d been hit by a bus in all my joints.

My boss finally had a long talk with me and suggested I take some real time off and get better. He assured me my job would be waiting for me when I returned and that I would be of more value to the company if I got well instead of trying to hang in there. I can’t tell you what a difference that made to my mental and probably physical well-being. So often people report going through a terrible period before diagnosis where they’re suspected of malingering or being a nutcase or just plain lazy. It turned out that I had a classic case of a “new” or newly discovered
disease first called Epstein-Barr virus, or CFS—chronic fatigue syndrome—or in England, myalgic encephalomyelitis. When I could no longer safely hold a teacup in my hand without dropping it, fibromyalgia was added to the pot. Some retrovirus was making my autoimmune system wage war on itself. I attacked my own joints as if they were foreign entities, tried to expel ghostly poisons through vomiting or the runs. My whole body seemed engaged in a deadly bout of shadowboxing that left me so exhausted I could no longer walk a block without assistance.

I lived on the second floor, and I remember many times sitting at the bottom of the stairs weeping because there was no way in hell I was going to make it back up. After about a year, I basically stayed in my apartment and neighbors and friends and people from my church helped out with shopping. I can hardly believe how long I was disabled and virtually confined to my apartment. The reason it seems unreal is that I was too exhausted to be bored. I really didn’t mind just sitting there as long as I wasn’t in too much pain. I wasn’t depressed at all, surprisingly; when I felt anything besides tired, it was fear. I was scared I was going to die.

After nearly a year and a half of solid sickness, I started to have days and parts of days where a bit of sunlight, a bit of energy, would break through. My hands had stopped deteriorating, too, thank God; that was something I really couldn’t stand. After nearly two years, I felt well enough to be a bit bored and began to devour the contents of the Boston Public Library, subject by subject. A friend would walk me there on a good day and carry the huge stack of books home. I spent several happy months learning about ancient Japanese theater—its art and dance and music—which branched naturally into Japanese religion and religious worship—chanting and liturgical music in particular. This experience was complemented by the church I attended around the corner from me, which presented the entire cycle of the Bach cantatas as part of the liturgy on Sundays, the way they were heard in Bach’s time, as an integral part of worship. The church, needless to say, attracted a lot of musicians and music lovers, as well as people in the arts and others who didn’t fit into a traditional mold. Nicely, though, we had our share of old Bostonian ladies in hats and white gloves. Emmanuel Church truly welcomes you to come as you are, and to stay that way if you wish. You are
welcomed, in booklet and banner, to join in as much or as little of the Episcopal liturgy as your conscience permits, “wherever you are on your spiritual journey.” It is not unlike Woodstock, in the way everyone is welcome without having to be
like
everyone else. Music lovers, Jews, Catholics, Buddhists, and nonbelievers share pews with old Bostonian Episcopalians. The liturgy stays the same, the liturgical year goes through its cycle with integrity, and you are permitted to do the same.

O
NE DAY
I G
OT A
phone call from a representative of my disability insurance company. I was ordered to see a doctor hired by and paid for by the insurance company. The state and the company’s insurance agency had been paying me a comfortable check each month, and my doctor would periodically send in the results of my lab tests, which confirmed in black and white that
something
was very wrong, though it didn’t have a DRG (diagnosis-related group) number yet. The experience of seeing a company doctor was not unlike being in Kit’s office once again. Do you know how spooky it is to be examined, clothes off, by somebody who keeps up a steady patter trying to get you to admit or confess that you’re malingering?
Enraging, humiliating, powerless,
are a few words that come to mind. Two weeks later I received notice that my disability payments were to be terminated. My real doctor was outraged; he held up my tests and said that what the other doctor had done amounted to malpractice.

The trouble is, that if you really
are
disabled, you’re in the worst shape possible to go to court and fight it. Insurance companies are not unaware of this. I feel like a wimp writing it now, that I didn’t fight it, but that’s only because it’s nearly impossible for me to remember or reconstruct the degree of fatigue I suffered. As my friend Marilyn, who has lupus, polymyositis, asthma, and a host of other problems, says, you can’t imagine what tired means until you’ve been there, until you’ve had to lie there and wet yourself because you’re too tired to roll out of bed, let alone make it to the bathroom. I had many, many days like that. Days I was too ashamed to call anyone over to help because I’d lost control of my bowels or bladder again and couldn’t change the sheets yet. Now my worst fear was not dying, but that I’d wind up living, destitute, in some state nursing home.

My father, throughout these years, kept asking me if I
trusted
the doctors I was seeing. Wasn’t there something more all these Harvard men at their Harvard so-called teaching hospitals could do for me? I went to several alternative-medicine practitioners at his suggestion: a homeopath, a chiropractor, and an acupuncturist for a series of treatments. They weren’t cheap, either.

I called and told my father the grave news that my disability payments had been cut off. A week or two later, something arrived in the mail. He had taken out a three-year subscription, in my name, to a monthly booklet of testimonials to miraculous healing put out by the Christian Science Church. He also sent me a hardcover copy of
Science and Health with Key to The Scriptures,
by Mary Baker Eddy. I would get well when I stopped believing in the “illusion” of my sickness.

What began to crack was my belief in the illusion of my father.

1
. I had a book when I was a little girl about a country bear who lived in the woods and wanted to see the big city. He was told, you’ll have to wear clothes first, so he fashions a fedora out of a cabbage leaf, two pieces of a hollow log for shoes, quite uncomfortable but de rigueur, and a suit of bark. At the end of the book there is a wonderful illustration of him returning to the woods, kicking off his shoes, tossing his hat in the air with abandon and pure joy at coming home, shedding all those uncomfortable things that just weren’t him. (If he’d stayed in costume, he’d have probably gotten sick, too, after a while, just like me.)

I
TOOK A LONG, QUIET
look at my life and decided that if I were to live much longer, I should not waste any more time living someone else’s dream. Easier said than done, but framing the intention was a start in the right direction. It was not some quick and easy conversion, I assure you. Those who say that the process of waking up and making one’s own way, of slowly tearing down old walls and reintegrating parts of one’s self separated by war or violence, ignorance, or neglect, is a “wonderful journey of exciting self-discovery” are the same folks who brought you “The Army: It’s an Adventure” and those “fun for the whole family” childbirth films they show you when you’re pregnant. Dream on! It’s brutal. Like childbirth, though, you do get the best thing in the whole world after the agony. But even then it’s still a load of work: sleepless nights, more terror, endless piles of shit (as the joke goes, there must be a pony under there somewhere!), and the privilege of meeting up with one’s own terrible twos and adolescence isn’t always pretty.

One of the first things I took a look at were all the Salinger “thou shalt nots.” Thou shalt not dabble in the arts unless a born genius, thou shalt not study religion unless in a sackcloth at the foot of some foreign guru. Thou shall not set foot in the unclean Ivy League. And for God’s sake, for father’s sake, never ever take an English class. Thou shalt not do anything unless it’s perfect, thou shalt not be flawed, thou shalt not be woman, thou shalt not grow up.

What do I like to do, and given my level of disability, what am I
able
to do? These are the questions I wrestled with. My priest, Al Kershaw, is a wonderful human being to talk to. I told him I didn’t feel right making any commitments that I might not be able to live up to. Literally—I can’t stand letting anybody down. I think I needed his permission, in a way, to relieve myself of active duty for a while. He said that contemplation was work, too, and suggested that I might think about attending divinity school. I remember looking at him as though he had two heads, exactly my reaction when, years ago, the human resources person at Boston Edison suggested I go to work in the garage. Who, me? I thought divinity schools were places in the Bible Belt where evangelical Christians, people who had it all figured out, went to train to become ministers, places like Oral Roberts U. My priest, an old Kentucky boy himself, laughed so hard he started coughing. When he recovered, he told me about several divinity schools in the immediate area where one could go to explore what one’s “ministry” might be, and that plenty of people went who were not considering ordination. Otherwise, he said, it’s just another layer of something that isn’t you, that isn’t genuine.

I knew I couldn’t afford the tuition, but I decided to take a look anyway. I really liked the program at Harvard Divinity School; it looked terrific in and of itself, but had, in addition, the wonderful advantage of allowing its students access to Harvard undergraduate courses in any field, as well as classes at Episcopal Divinity School, and the Jesuits’ Weston School of Theology just across the Cambridge Common.

I made an appointment with the admissions and financial-aid dean and spilled the beans. I discussed my medical condition and uncertainty, as well as, among other things, the problem of having a famous parent who doesn’t approve and will not contribute. The dean said, “We’ll see what we can do.” A few weeks later a fat package came in the mail informing me that I’d been selected for a merit-based fellowship offered to ten incoming students based on their past academic record. I was awarded a full scholarship and a low-interest loan to provide for living expenses. I would automatically be enrolled in the university’s health insurance plan, and the office for students with disabilities would provide me with a tutor to take notes in my classes if I was unable to attend for periods of time, a parking sticker for handicapped students so I wouldn’t have to walk far, and an ombudsman should any difficulties
arise. There was even a quiet room in the library with a couch if I needed to lie down between classes.