And Now, the Present

Note: This fifth installment in the story of my illness breaks the chronological narrative to give a glimpse of the present. Links to the previous posts can be found in the sidebar.



I am lying in bed. The late afternoon pours in the window to my left. Pulling shades during the day seems, somehow, a bad thing to do. Even if I must cover my eyes with a sock or shirt sleeve to make an illusion of dark close around my face, I like to know light still fills the room.

Thus and so. Assorted odd habits prop up my confined life. At night, I sleep with my head at the head of the bed and my feet at the foot of the bed. Come day, I lie with my head at the foot of the bed and my feet at the head of the bed. Voila! The one bed is two places and I half as confined.

I am doing today what I used to do every day—lying in bed mostly, watching the sensations in my body. Yesterday I spent about an hour and a half on the computer. Half-hour intervals with rest between. I had some hand pain at the end of the day, really not bad. I felt decent. But I woke in the night, the flesh of my shoulders and arms smarting and stinging.

Nurses ask me to rate my pain on a scale of 1 to 10, then receive with surprise the low numbers I give. I try to explain. I know how bad pain can be. It is an act of obeisance, of respect, of holy fear. I have not forgotten. I must save some numbers; I might need them.

I would rather not play this game at all, but I do. I say, “Today my pain is a 3,” and they say, “Oh, that’s not so bad.” The one-dimensional question yields a one-dimensional answer which yields a global conclusion. In a way it isn’t, often, so bad—in that one dimension. I can often keep my pain level down. At a cost. That is another dimension.

If training for a marathon gives you #7 pain—well, you may have to give up marathons to bring the pain down to 3. That is the cost. If most minor functional activities give #7 pain—well, you may have to spend your days doing nothing. Number 3 pain bought at the cost of marathons. Number 3 pain bought at the cost of most activity. Pay up! A second dimension.

Days like today have become less common. But I’ve lately been feeling on the verge of a major setback. Pain comes more easily, leaves less easily. Some days, like today, I revert to older limits. Larry, could you move that pillow for me? Larry, could you put these pill bottles in the cabinet?

The pain today feels emphatic, a warning. So I’ve been lying here in bed—thinking. Mostly about a question from a friend who recently read my blog. When he knew me at seventeen I ran and swam, windsurfed and danced. Yet I describe myself as having been sick since childhood? Counting from the first total collapse, as I usually do, I’ve been sick for 16 years. Counting from when the trouble began, it has been at least 32. Surprise at this is common. “But Priscilla,” another friend says, “you were so active.”

Yes, I was active. The trouble was hidden. But my journals record how bad I felt. And I was trying hard to feel better. My journals record that too. Standing and sitting were difficult; moving helped. “You were compensating,” my dad says. Yes, I was compensating.

So I was a very busy, moving-around kind of person. Not to mention just plain willfully persistent. Slowly the trouble grew, then quickly and fitfully. I lost more and more, recovered less and less. Until the pain started. That was 9 years ago. Then the pain stopped me. There has not been much moving since.

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Pain has me awake early again. I look at the dark. I speculate about origins and causes. I lie in bed thinking of the number 5 and the number 6.

This is 5 pain, I decide. Five all over—very different, I think, from 5 in one place, just the left hip or the right elbow. My pain is usually structure-specific and triggered by use: I typed two paragraphs, now my hands burn. I tried a new little exercise, now my lower back aches. This pain is something else, familiar but uncommon. Blurry. Vaporous. It permeates my muscles, tendons, and connective tissue. Everything is exquisitely tender. Coverage—another dimension.

“Let it be. Let it be,” say mother Mary and brother Paul.

Lines of early light, blurred by my myopia, reveal the borders of the window shades.
Mind-numbing, this pain. I ride the diminishment in my mental acuity. I levitate. Just a little. Just enough.

When I stand to walk to the bathroom a deep ache rises from my feet to my hips. Back in bed, I hear a car outside. The refrigerator wakes and whirrs. My lower abdomen begins to ache, too, sharp, particular, insistent.

What next little brain, bestirred and becalmed?

I think of how decadent my lifestyle has slowly grown. Many weeks I am upright much of my days, taking care of small tasks at my desk, indulging my whims on the computer, even getting myself snacks and occasionally a meal. I have long conversations; I take very short talks. I can watch videos now, make my bed, gesticulate with abandon. And oh what heady freedom the Web promises and sometimes delivers.

How will I manage if I lose these gains? Have I already lost the skill of stillness? Of being?

The pressure and ache in my abdomen and, now, my pelvis waxes with the light. Correlation, not causation. I can just distinguish the joists in my ceiling from the white board between them.

Years ago I dreamed I was under water. I was afraid. How was I going to breathe? Then I tried it. I dreamed this again and again, and every time—to my recurrent astonishment—I could breathe under water.

Last night, I swam in my sleep. My crawl-stroke was good. And—to my amazement—I didn’t need to lift my head for air. As before, I could breathe under water.

This, just before waking. Never mind that I couldn’t swim very far. Never mind that I started to lose my sight and black out. Never mind. I could breathe under water. I could still breathe under water.

I’m tired. Must be nearly 5:30 now. The pain in my abdomen has eased. The refrigerator is quiet. No cars on the road. Later, weeks from now, when I’m revising this piece and preparing to post it on my blog, I will worry about whether or not my breathing under water is as good as it used to be. I will worry that in the dream, I was losing sight and consciousness because I don’t quite have the trick any more of getting air from water. Later.

Right now, I think I’ll see if I can slip back to sleep. I really don’t need to be up for a couple more hours.

At Least There Is This

Note: This is the fourth post in a series telling the story of my illness. Links to the previous posts can be found in the sidebar under the heading “What’s Wrong with My Body and How It Got this Way.”


It is fall 1997. The scene is a small, one-bedroom apartment in a northern neighborhood of Chicago. The tightly fitted furniture makes a maze of the dwelling—a couch, an armchair, a rocking chair, a tape cabinet, two desks, several end tables, ten bookshelves, a bed, two dressers, two tables, and at least eight chairs. Where there are no books, there’s art. In the living room a short bank of windows overlooks a courtyard. Through it can be seen the facing wall with its faux-Tudor appointments. Look out and hard left: a large tree and a bit of grass beyond the tall black gate, a sidewalk, cars, the road. Turn back to the room; look down.

A rectangle of grey wool carpet covers the hardwood floor between couch and windows. It’s gritty and grungy; the vacuum is not a frequent traveler here. There’s a woman on the carpet. She is alone. The man is out. What is she doing? She’s lying there. She’s looking at the leg of a chair. Earlier she stared under the couch, then at the ceiling. Now it is the leg of the chair. What else can she do? Not much. She can lie on the couch. She can lie on the bed. She can lie on the floor.

She thought the test and the doctor and the drugs would make her better. She thought that five months ago. Now she looks at the leg of the chair, dust on the floor, her hair on the carpet. Her hair, falling out, covers her hands when she touches it; it hardly matters. She runs her fingers across the carpet, collecting the hair into a loose ball with bits of wool, paper, dust. It is a satisfying object. It is perfect, this object from her home. It is what she is—detritus.

She can move, and she can lie down. She manages some laundry, a few tasks at her desk. She cannot stand still. She can sit for five or ten minutes, fifteen at the most. It is not a matter of feeling good and normal when horizontal and bad when vertical. It is a matter of bad and worse and—if she pushes, if she misjudges or overrides the inner signs and follows desire rather than need—much worse. The consequences last not hours but days, a week—under certain circumstances, indefinitely. She negotiates with the demon. She is always trying and failing to keep the nasty thing calm.

Some days she wakes to a strange sensation of well-being. “I’m better...I’m better...” she thinks—still, significantly, lying in bed. Emerging to share the good news, she stands by the desks, briefly not moving. “I can stand,” she says, “Look, I can stand. I’m getting better.” And then the hammer comes down. The thug had only paused to smoke a ciggarette; now it is on her again, and she is making for the couch.

The unthinkable has become imperative. She must do nothing. When the drugs didn’t answer, and she did not get better, she resigned the full fellowship, with tuition and stipend, just offered to her, and requested a leave of absence from graduate school. Before writing the letter she looked forward through imagined months—It will be okay, she told herself, somehow... I’ll find something to do...maybe I’ll make a quilt of the fabric scraps I’ve been dragging around for years. Believing made the necessary possible.

She rolls on her side and presses a hand to the floor. She’s getting up, getting ready to go out. It’s a grey day, drizzling and chilly. It’s a sunny, fall day—crisp, leafless. It’s just windy and indecisive today; clouds rush across the sky; warm air and cool swirl around the corners of buildings. It’s quite cold today—freezing rain, actually; a little hail fell earlier. It doesn’t matter what the weather is today, she’s going out. She does it every other day, regardless; regardless of how she feels, regardless of the weather, regardless of everything, she walks. Determination seems the only recourse.

She locks the front door behind her, descends the stairs, enters the foyer, exits the foyer, enters the courtyard, exits the courtyard, starts down the sidewalk to the lake. She must always move. When she stops at Sheridan Road, she waits on the corner for the light to change, stepping in place and pumping her calves. She crosses the road, crosses the parking lot, reaches the path. Lake Michigan isn’t wild like the Gulf of Mexico where she grew up. Planes pass overhead every twenty seconds, and the hum of the city presses nearby. But at least there is this: sand, sky, and water.

She walks the slim concrete path. She pushes against the wind and gravity. Gravity is so fond of her, always pulling. Even as she observes the people on the beach and peer, the mood of the lake and air, she watches the interior weather too. Waves of wooziness; even, heavy fatigue; diverse, sometimes desperate, sensations in her limbs. Sick, dead, empty, weak. She must keep moving, she must get up anyway, go out anyway. Determination seems the only recourse.

She sees a familiar figure approaching, a fellow graduate student. The woman sees, too, and recognizes. They reach each other, “Wow, Priscilla,” the woman says, “it’s so good to see you. How are you doing?”

Greetings, updates.

“Well,” the acquaintance says, “you look great!”

Tilt Table Test

Note: This is the third post in a series telling the story of my illness. To read the first two, look in the sidebar for the link list entitled "What’s Wrong With My Body and How It Got This Way."

I should write an ode to the sphygmomanometer, that nifty little instrument commonly used to measure blood pressure, for where would I be without it?

I was on the treadmill, wires streaming from my chest, bare boobs flopping in the breeze, a nurse tethered to my left arm by a manual sphygmomanometer. Dr. Paulsen had asked me a hundred questions. He had listened to my heart, lungs, and carotid arteries. He had palpated my abdomen and neck. He had taken my blood pressure and counted my heart beats in multiple positions. He was thoughtful, intent, and kind. He said that neurally mediated hypotension certainly could account for my symptoms. Even in the office he was seeing uncommon lability in my heart rate and blood pressure.

But, he said, my symptoms could be caused by something else. There could be something wrong with my heart. He wanted to check. So he called over to the stress-test room, and they said they could slip me in for an unscheduled run on the treadmill. I got my chest skin scrubbed raw and electrodes stuck on, and there I was, moving fast on the track to nowhere, like I said, boobs flopping in the breeze. You mean, I don’t get to cover up? No.

My standing blood pressure at the start of the test was 120/80. The big number is systolic pressure; that’s when the heart is contracting, pushing blood through the arteries. The smaller number is the diastolic pressure; that’s when the heart is relaxing and opening. My peak systolic pressure during exercise was 160. In the last minute of exercise I reported blurry vision. They couldn’t hear any pressure, whether because of ambient noise or very low pressure or both, and I felt lightheaded, so I stopped. After I lay down the nurse recorded a blood pressure reading: my systolic had dropped from 160 to 70, and my diastolic was inaudible. Dr. Paulsen was impressed. He felt certain I would have a positive tilt table test.

Funny, on the final report of the exercise tolerance test, under the heading “patient profile,” they listed my activity status as “athletic.” Oh yeah, athletic. Not even in my erotic dreams.

The next day I presented myself at the electro-physiology lab, sans breakfast, for my coveted tilt table test. A tilt table test is simple: They strap you to a funky table which can pivot on an axis. When the table is tilted to an upright position, usually 70 or 80 degrees, the straps hold you up. Because your leg muscles don’t have to work, they don’t. As a consequence, they don’t help return blood to the heart as they do under normal conditions, and all the gravity-defying work is left to your heart and veins. The idea is to see what happens with your blood pressure and your heart rate. Every hospital has its own protocol, but at some point, if you haven’t passed out by minute six or ten or fifteen, whatever their protocol is, they give you a drug through intravenous infusion. Isoproterinol is, I think, an artificial version of adrenaline, and it makes your heart go very fast. Whoopee!

If that doesn’t make you pass out, you are just fine and dandy, and what are you doing there anyway? At least that’s probably what they tell you, although it may not be true. The artificial situation may make more apparent what you’re struggling with in your daily life, or it might mask it. Or it might not have anything to do with the real problem. Also you can have changes in your blood pressure or heart rate which constitute positive test findings even without loosing consciousness.

I don’t know if the two women who conducted my test were techs or nurses, but I’ll just call them nurses. At any rate, there were two of them, plus me in my hospital johnnie, in a cramped little room filled with equipment. Much preliminary fussing preceded the main business. My shy veins didn’t make insertion of the I.V. line easy. After several tries and several failures, I said I didn’t think they were going to need the I.V. anyway. I couldn’t imagine making minute seven, the protocol for this hospital, without passing out. The nurse looked at me funny and said with certainty, “Oh, you’ll need it.”

So I was strapped to the table. Thanks to a determined nurse, an I.V. tube dangled from my hand. An automatic sphygmomanometer held my left arm and a manual one my right arm. Electrodes on my chest relayed tiny signals to one of several machines clustered about. The nurses took my blood pressure and heart rate in each arm. They massaged my left carotid artery and recorded my blood pressure and heart rate, they massaged my right carotid artery and recorded my blood pressure and heart rate.

Finally, we were ready to go. Let’s do it.

My baseline blood pressure lying on the table was 133/79. That is just fine, maybe a little high on the systolic pressure for a 25-year old woman, but no big deal. My heart rate was 99, which is rather fast, when you think of it; 60-80 would a be a more normal resting heart rate. Immediately upon tilt to 80 degrees, my blood pressure was 128/84—still fine. My heart rate was 137. I said I felt slight light-headedness. Now, as I understand it, this is already an abnormal test result. An increase in heart rate of more than 30 beats per minute going from lying down to upright tilt is abnormal. But we were just getting started.

At two minutes my blood pressure had dropped to 106/56; my heart rate was 147. I said I felt light headed. Next, pressure was 70/non-palpable, heart rate 134. I said my vision was going. Then my pressure fell to 54/impalpable. Fifty-four: that’s the big number, the one that is usually over 100. I was non-responsive. Finally, they couldn’t palpate any pressure. I was unconscious. Minute three. No isoproterinol.

Going out and coming back felt instantaneous—to me. The nurse wrote in her notes that I was slowly returning. I woke to glasses completely fogged over and a left arm ready to fall off. The automatic sphygmomanometer clamped tighter and tighter seeking some sound of resistance.

Oh, I was giddy. I smiled. And I laughed. And they thought I was a little odd. It was all so funny. “I worked hard to get this test,” I explained. I had thought this was the right direction to go in, but I wasn’t going to really know until I had that positive result. I had it. No cause to feel the fool.

I said later to Dr. Paulsen that I wasn’t sure if I had actually passed out. He looked at me, another one of those funny sideways looks, and said, “Oh you were out. You were definitely out.” He also said I must have been walking around in the world with very low blood pressure. Looking at my test results now, I think I see more clearly why he thought that. With systolic pressure below 90, you’re risking unconsciousness, as I understand it. I was still speaking at 70; I was still conscious but non-responsive at 54. I didn’t actually pass out until the pressure was completely impalpable. And the provocation that got me there was slight.

Walking through the halls of cardiology, a nurse stopped me. I don’t know how she knew who I was. “Hey, I heard you had quite a test today,” she said. “Yeah, I did.” My ten minutes of fame.

Two more tests completed my cardiac work-up that summer. The stress test was actually abnormal for more than the episode of low blood pressure, and the automatic printouts said “this test is positive for coronary artery disease.” However, positive stress tests are common in women regardless of whether there’s something wrong with the heart or arteries. Images are necessary to tell for sure. So, in another, much smaller room, a technician dimmed the lights and pressed her magic wand beneath and between my ribs, to send tiny sounds into my chest and listen for their echoes.

Does everybody feel a sweet and unsettling melancholy when, for the first time, they see the image of their heart there on the dark screen? With the rise and fall of my breath, static filled the screen and cleared, revealing beneath my lungs, the persistent action of my heart, a little fast and, it seemed to me, rather more squeezy than necessary.

The doctor confirmed that my heart is hyper-dynamic, and this might contribute to my trouble. If the walls of my heart touch each other, as they can in a heart so squeezy as mine, it can trigger one of these drops in blood pressure. Or so he said.

The tech took many pictures from many angles, telling me each time to hold my breath out. And a month later, I took another turn on the treadmill so they could take pictures while my heart beat like mad. The cardiologist, present this time, intervened. I had just run to a peak heart rate of 200 beats per minute or some such, and again the tech wanted me to hold my breath each time she snapped an image. Dr. Paulsen told me to breathe as I needed to and coached the ruffled tech to watch my breath and catch the images in between. If I was more of a poet and a sage I could make something of that. Well, my heart was fine; that’s enough.

Recently, a woman posted her tilt table test results to a dysautonomia forum I dip into occasionally. She asked if others would be willing to post their results too. I didn’t put mine up, but I looked at the others. I was not prepared for what I saw, and I felt briefly queasy after looking. My test results were dramatic in comparison to most of them. And I’ve gotten much worse in the eleven years since.

Not to get too dark on you. The story to come is not all hard. But there is a lot more to tell. And, no, we have not hit bottom yet.

Even while I am writing the past, I’m still living the tale. Really I don’t know for sure where my condition is now because I have been on medication for years. The tilt table test I had was low-tech and long ago. Though it documented dysfunction, it gave no indication of the mechanisms involved. This week I saw a neurologist for the first time. I will have another tilt table test soon, complete with continuous blood pressure measurement and Doppler imaging of blood flow to the brain. Plus I will submit to other, more detailed autonomic testing and MRI imaging of my head and neck. I’m actually crazy enough to worry that I will now heal before I get a chance to thoroughly document the trouble, making me look like a histrionic hypochondriac. "We should have such trouble," my Larry says.

I find myself in that familiar position again, hoping that the tests will give us more specific information to act on, fearing that they won’t. If they don’t, I’m afraid I will be left still in the position of handing small tokens—lists of symptoms, inadequate descriptions of my daily life—across the great divide between my experience of my body and the doctors’ conception of it.

But I think, too, of the definition of hope Larry articulated recently—the willingness to live forward into uncertainty, without despair. That is what I am doing now. Yet I also know that hope can mean taking your despair by the hand and choosing to live forward into uncertainty, even with that difficult companion.

And Then My Trouble Began

(Replaced photograph with cartoon 10/16/08.)

Read the first post in this series here. Links to all posts in this series on the story of my illness can be found in the sidebar.

Midway through college—about fifteen years ago—I took a year off, spent six months in Indonesia, thoroughly wore myself out, got creamed by a prophylactic malaria drug, picked up gut bugs, and dropped production of lactase, the enzyme which breaks down milk sugar. Stopping the anti-malarial mefloquine eased the lightheadedness and headaches that pinned me to bed, but I didn’t rebound. I came home sleeping fourteen hours a day, thoroughly lethargic the other ten. I extended my absence from school another term and took antibiotics again and again and again. I got some better, but the gut just wouldn’t calm. I saw doctors, went for tests, became expert in various methods of stool sampling. More than twelve months and I don’t know how many consolation milkshakes after my return, I tried the no-dairy diet. Oh my, undigested lactose is bad for tummies; it makes them cramp and hurt bad. Hence my discovery of just how everywhere lactose is and how much trouble very little can make.

No bugs. No dairy. Still no calm. A gastroenterologist peered inside my colon with his nifty periscope. I thought my inner walls looked beautiful, shiny, resilient. He said, “You’re right. Your intestines aren’t working well.” But no bad things grew there. None showed either in the many pretty pictures taken with the aid of that great tester of sphincter competence, a barium enema. And the ornery MD—having schooled his mind to stomachs and intestines, to things he knew and not to mysteries and clues—felt not a prick of interest in the clue to my great fatigue that came while I wilted under his care.

On the day of a blood draw I felt particularly weak, like if auras were real mine was eaten out with acid. I sat in the chair through one tube . . . two tubes . . . Then I awoke in a vinyl recliner. They said I had had a small seizure. They let me rest a bit. They wanted me to get up and go. But in the dark my brain had snagged on something and twisted. Opening my eyes, moving in any way, watching any movement, these things just tightened the twist. They carted me off to the gastroenterologist’s office and dumped me on an examining table, where a nurse periodically pestered me to sit up. Since she insisted there was nothing wrong with me, I eventually erected myself and externalized the contents of my stomach, a little thank-you present. Mercifully, the soon-to-be groom of this invalid bride worked in the hospital. An email from the phlebotomist had roused him from his cubicle. Now, very slowly, Larry wheeled me down to the front door and drove me home as gently, as smoothly as he could. I landed on the couch, and, though awake, didn’t move for 5 hours.

The next day I called the technician who had drawn my blood, seeking more information. Like many phlebotomists I’ve tangled with, he thought he knew all about fainting and had a psychological profile for fainters. Pass out when you’re having your blood drawn and everybody pegs you as being afraid. But a normal person who passes out feels normal again soon afterwards—so I’ve heard, though I can’t speak from experience. I had felt like a sumo wrestler pressed my skull between his fists, like the world moved way too much, like if I turned into a stone I would not be still enough. And it took days to recover. This seemed significant to me, and I was right, but I wouldn’t begin to understand why until a couple of years later.

I graduated from college, married Larry, moved to Chicago, started graduate school. I was always tired, and my bowels cycled through tantrums and passive-aggressive silence, but I functioned. I finished a one-year master’s program in performance studies and started the PhD program. I was a Baha’i at the time and a fool. I still tried to keep up. I managed my symptoms, extracted flaccid aid from the student health service, and gradually went down. Then one afternoon, early in the Baha’i month of fasting, something happened in my body. I can’t say what because I don’t know; I just suddenly felt radically wrong. I broke fast immediately, but a change had occurred and there could be no pretence of functionality anymore. I was now so tired I lived each day just to make it back to bed. Then I lay there and stared at the wall while I awaited sleep, desperate for unconsciousness. I was unafraid of death. I wasn’t going to seek it, but I wasn’t going to complain if it came.

Before this, I kept saying I felt nauseous and doctors kept asking me if I might be pregnant. They asked me this question for so many months that I started to wonder if they needed a refresher on reproductive biology. Nauseous was the wrong word, anyway. As a kid I felt sick riding in a car for even short distances, and people told me that I felt nauseous. But I felt sick in my head not my stomach. Woozy would have been a better word. Now I sometimes tell doctors I feel lightheaded, even if I don’t, because it causes the right neurons to fire in their heads. Telling them how I really feel leaves them blank-brained. In medical school there are no classes in the poetics of illness.

And the need to communicate does not come prepackaged with ready eloquence. I didn’t have the words to match the experience. In a fresh attempt to convey my situation and get help, Larry and I made a one-page statement of my symptoms. I tried to describe something of what I felt: the sick empty sensation in my limbs, the extreme fatigue and weakness, the pressure in my chest, the headaches and motion sensitivity, the way my symptoms would, in an instant, get suddenly worse, after which it would take several days to a week to nurse me back to the usual bad that was now my best. The real feelings of illness were not this orderly and straightforward. They were kaleidoscopic.

Having no independent health insurance, I was a plaything of the student health service, where the doctors thought mostly of substance abuse, depression, mononucleosis, pregnancy, and sexually transmitted diseases, whether or not these possibilities were objectively relevant. By the time of my big setback, I had seen most of the doctors there, to no avail; they were nice enough and inexperienced, mostly fresh from their residencies. I requested and got the head of medical services. She turned out to be an evil woman named The Penguin. Well, actually, her first name was Pengwynne. I’m sure God loves her and wants me to love her too, but she was not nice to me, not nice at all. At the first appointment I handed her my statement. She set it aside without a glance and said she wanted to hear it from me. Excuse me, who do you think wrote this and gave it to you, Tinkerbell?

After the first round of blood tests came back negative, she said I was just a little depressed, suggested I take a regular walk, and made a plug for some then-new antidepressants that could have been filmed for an ad. I thought that if a little depression could cause my symptoms, the whole of human society would come to a standstill. But I dutifully submitted to evaluation by a psychiatrist who, much to the Penguin’s annoyance, said that I was not depressed but managing well with a hard situation.

Larry came to my appointments. The doctor made her displeasure known by glaring and grumbling about the difficulty of accommodating another body in the small exam room. Once, in Larry’s place, my mom came. When Dr. P entered the room, my mom stood and introduced herself, putting out her hand in greeting, but the evil Penguin paused, looked at that hand, and then walked past to her desk, where she collected herself, turned around, and said hello. When my mother suggested that I shouldn’t have to have separate appointments for every test, that this process ought to move faster, Ms. Penguin said she didn’t think the problem was urgent.

After depression and a few other false starts, Ms. P thought AIDS might be the culprit. I explained in detail why I was fairly certain I could not have HIV, in fact I would have been a medical mystery if I had. She was unmoved. I think doctors that work in student health services are specially trained to assume that patients lie about their lives. I was trying to work with her, trying somehow to get her on my side, so I consented to the test. But when the results came back indeterminate (two positive ELIZA tests and one indeterminate Western Blot), Ms. P, now armed with a concrete reason to think I might be HIV positive, went forward on the assumption that I wasn’t.

She did not order the third, definitive test, a decision which several doctors later told me was completely unethical, but left me with a new, though to me still improbable, thing to worry about and instructions to get the same test again in a few months. I did, twice actually, and both results were negative. So a lot of stress and trouble for nothing. The Penguin talked to some other doctor, decided I might have an autoimmune disorder, and began pursuing that possibility at a leisurely pace. I thought this a reasonable and hopeful turn, until I read descriptions of the various autoimmune diseases. None sounded remotely like me. Progress was not coming from this doctor.

I asked for a referral to a cardiologist. She said no. I told her about the autonomic disorder that researchers at Johns Hopkins had linked to chronic fatigue syndrome. Dysautonomia, the term I used in the first installment of my story, is the general term for a dysfunction of the autonomic nervous system. There are many kinds: a person may not be able to sweat, their bowels may not move, or their heart may beat too fast when they’re standing. The researchers at Johns Hopkins used the term neurally mediated hypotension for the particular form of dysautonomia they studied. And my post-fainting symptoms were described well by them, though in a milder form. They theorized that chronic fatigue could be caused by a series of pressure-drop episodes (not necessarily causing outright fainting) that kept the patient in a state of perpetual funk.

Neurally mediated hypotension is a kind of orthostatic hypotension—that is, low blood pressure in an upright position. Hypotension means low blood pressure; neurally mediated means the nervous system is involved in causing it. When you stand, gravity pulls your blood down toward the center of the earth (but it can’t go farther than your feet). Your body has to work harder to keep your blood from pooling down there and to return it to higher-altitude regions. The normal body doesn’t always respond fast enough to prevent a feeling of lightheadedness, but it does kick in, constricting blood vessels in the legs and speeding up the heart a bit. Neurally mediated hypotension is sometimes also called delayed orthostatic hypotension because it does not refer to the light-headedness that sometimes comes with standing up too quickly; it refers to a precipitous drop in blood pressure with sustained upright posture. The test for it is something called a tilt-table test. I wanted one.

Just to humor me, I’m sure, the Penguin took both my sitting and standing blood pressures. She said that after standing my pressure went up a little bit, so I didn’t have that problem, but my heart rate did go up too, so maybe I had a little blood-volume problem. Possibly she could give me a little fludrocortisone.

Everything was little with her: a little depression, a little blood volume problem, a little daily walk or a little fludrocortisone to help the little problem. I must have been a little overwrought, exaggerating my little difficulties not a little bit. I fantasized staging a performance art happening outside her office door. I would stand there until I passed out, while Larry held up a stop watch and counted out the time. It probably wouldn’t take long. I might injure myself, but it would be worth it. I told her I didn’t want “a little fludrocortisone.” I wanted a diagnosis and serious treatment, and I knew that this in-the-office, 20-second standing blood pressure reading was irrelevant to diagnosis of neurally-mediated hypotension.

I called a cardiologist’s office; they wouldn’t take me without a referral. I could not get a referral from the Penguin. Maybe I could have found a doctor who would refer me, but we were worn out. There was an option, however: two years before, Larry had worked with a couple of cardiologists in New Hampshire while completing his doctoral dissertation in electrical engineering. He emailed one of them and told him our situation. The cardiologist agreed to see me in a few weeks and pre-scheduled a tilt-table test. We were intending to go to Maine for the summer anyway, and so, knowing that we might have to pay for these new medical bills ourselves, we made the journey East to see a doctor who was interested, wanted to help, and wasn’t hostile. Of course I would be diagnosed and treated, and would make an impressive recovery like those narrated by the Johns Hopkins researchers in their journal articles.

Ah, that would have been nice.




The next post in this series is "Tilt Table Test."

In the Beginning Was Dysautonomia

(Image changed 10/21/08) This is the first post in a series telling the story of my illness. Links to the other posts in the series can be found in the side bar.

I spend a lot of time lying down. It’s a fatigue thing. It’s a weakness thing. But first and foremost, it’s a blood pressure thing. Unmedicated, mine swings about wildly, running high and plummeting with sustained upright posture even until it is impalpable. By third grade I knew how to recognize when I was going to pass out and to prevent it, so I haven’t fainted that many times. Interestingly, the brains of some people with this problem re-set the pass-out threshold to a lower point, enabling them to remain conscious at a blood-pressure level that would put a normal person out cold on the floor.

I was not diagnosed with this dysautonomia until I was 25, but my memories of it go back to at least age 5. I awoke not feeling well on the morning we were to leave for a road trip to Arkansas. I got up and started down the hallway to tell my mother . . . then I was looking up at her. “Where am I?” I asked, classically. I was on the floor.

The doctor had no specific explanation; he suggested that I had been temporarily weakened by a virus. Maybe I did have a virus that day; maybe that was the beginning of my problem. But my memories of discomfort with upright posture are so early and pervasive that I can’t tell for sure whether they predate that incident or not. I have never really been comfortable sitting for long periods or standing even for short periods.

We were forever lining up in elementary school. It was a torment unto me to stand there waiting to be allowed to walk, the physiological stress building while Mrs. Evans demonstrated how she had been taught to shake her hips in finishing school. An endless variety of delays kept us suspended on our feet and me desperate for movement to return blood from the legs to the heart. Many childhood pictures show me squatting, leaning, bending forward while sitting, unconsciously trying to help my body get blood to my head. When I look at old pictures of myself standing or sitting, I can remember perfectly the uneasy, unpleasant feeling in my trunk and limbs. I now recognize it as a sign that my body is having difficulty getting blood where it needs to go. Back then, I didn’t know that everybody didn’t feel this. To me it was just the way it felt to stand or sit.

In third grade I passed out again. My family was participating in a health study, and we each had to have a fasting blood draw. I sat on the edge of a gurney, my feet dangling in the air, and watched as the technician cinched and swabbed my arm. I don’t remember any pain or fear with the puncture. I just watched the tech’s face as he chatted away. The sound stopped, but his lips continued to move. My consciousness hovered airily for a moment, fascinated: He’s talking and I don’t hear anything. Television static slowly consumed my vision. Suddenly I opened my eyes to see several concerned medical types standing over me. From the doorway, my mom smiled and waved encouragingly.

They let me rest and gave me a blueberry muffin and orange juice. I said goodbye to my sister, who had to leave for school and was jealous that I didn’t. Then I produced blue-spotted, bright-orange vomit and thought I would rather be in school. After this incident I knew to sit or lie down quickly when I saw static. I didn’t pass out again until I was in college, though I had some close calls.

But I did suffer fatigue—lots. In late high school, I finished the school days desperate to lie down. By pushing I managed to do a lot anyway, but with a struggle my classmates never had. This doing-it-anyway was just one of many ways my undiagnosed, ever-present dysautonomia shaped me. I’ve always loved swimming; the pressure of water on the surface of the body, it turns out, supports circulation, making water more comfortable than air for someone like me. I think, too, the dysautonomia’s persistent, internal demands on my attention made me more introspective and contributed to my social insecurity by preventing me from ever being forgetful of self. It also strengthened my wariness of the social maneuverings of high school, so many of which were carried out in contexts I couldn’t be at ease in—standing around the school parking lot at lunch, standing at parties, standing at the favored gathering-place on the seawall on weekend nights.

In college I took drawing classes where we stood for two or three hours. I asked a classmate once, as we left the studio, how he felt after class. He looked at me funny. “I mean, are you incredibly tired?” “No,” he said, “not really,” and walked briskly off. I probably slept until my next class. I alternated vertical activity with horizontality—on the grass, the floor, public couches, my bed. I was just beginning to suspect that something was different about me, not right.

In a way, our respective futures were captured in that moment. He went on to be a professional dancer and choreographer, and I—well, I have spent a lot of time lying down.


The next post in this series is "And Then My Trouble Began."