As I drive along the Northwest Expressway, a train chugging down the parallel tracks catches up with me, then passes me. The fog makes it impossible to see where the train is going or where it came from. I bristle at the way such details soften into shadow, how everything just beyond is wrapped in a gauzy shroud. Others may view the fog as artistically dissolving patches of suburb into misty hamlets; they may see the train tunneling into a cloud as a vision from a romantic 1940s film. But the cinematic qualities are lost on me. It is eerie to watch something so tangible disappear, lost from view even though it is still there. I ache for the rain to return and wash the fog away, rinse colors to their brightest hues, sharply focus lines and edges, help me see clearly again.
That moment of not
being able to remember,
ironically, I cannot forget.
There was a time when it seemed I could see the past clearly. I could confidently recall exactly what was said in a conversation, how it was said, the slant of the light across the face of the person talking to me, whether a car passed on the street behind them, and I could recount it with precision years later. My mother referred to me as "the steel trap." She loves to tell people how, before I could actually read, I memorized The Three Little Pigs word–for–word. I knew when to turn each page; when I performed the "reading," my words exactly coincided with what was written in the book.
As I grew up, this ease at memorization helped me prepare for tests at school. I could essentially see the text pages in my head — the layout, the headings, the colors and where the sentence I needed for the answer was located on the page. It wasn't exactly a photographic memory, but certainly my memory was picture prone.
But at some point over the last five years, I started having difficulty recalling. Details of experiences accumulated over my life have dissipated behind a kind of fog I can't sweep away. Now I often find it difficult to find words or even recall entire conversations friends claim we've shared. When my father forgets such a shared experience and has a "senior moment" he'll jokingly respond, "Did I have a good time?" But I'm not a senior. I'm not yet thirty.
I remember clearly when I couldn't memorize for the first time. It was March 11, 1999. I am able to give that date because I have journals and calendars and because I am a notorious keeper of papers and files. But the moment — that moment of confusion, that lack of clarity — is ingrained in me. That moment of not being able to remember, ironically, I cannot forget.
It was the night before my Age of Dinosaurs final at the university. More difficult than it sounds, the class was a hard–core science course in which I had to memorize, among other minutiae, how many fenestrae (openings in the skull bones) identified each species, genus and family of dinosaurs. These were merely lists — the simplest form of memorization. And until that time I had excelled at memorizing.
So when I sat down to memorize the lists of dinosaur families and the identifying characteristics of their bones and found that I couldn't, I became frustrated. It was as though I was in shock, unable to cut through the fog that was filtering the information from my imaginary view. The picture board in my head was cloudy, but I just kept trying to brush it away. Do it again, I kept thinking. Just read it over again, slowly. Now say it aloud. I must be tired. Read it again. Take in the parts. Let's start over. You’ve got that section … or … what was that other bit? Where was I?
More than a year before fighting the haze that kept me from my dinosaurs' fenestrae, I was dealing with another set of foes: fatigue and joint pain. I thought the fatigue I was experiencing was simply laziness, which made me feel ashamed. I would push myself to activity, and then use the activity to explain the aching joints. Dancing freestyle in the house — using long–out–of–practice ballet moves — must have caused the pain in my ankle (although I didn't remember injuring myself). Forcing myself to bound up the stairs by twos must have caused my knee to give out. Holding the weights too tightly during my workout, I reasoned, explained hands that would ache to move.
But I simply ignored the sporadic aches and pains I dealt with until 1997: The Thanksgiving of The Claw. That Thanksgiving the joints in my right hand started feeling sticky, then my whole hand tightened into a claw–like clench. When I tried to open my palm, pain shot up my arm. So I held my arm close to my chest like a broken wing, and it stayed that way throughout the day. The Claw was the main topic of conversation at Thanksgiving that year. My whole right arm — my useful arm — was useless. And my family and I found a great deal of amusement in my desperate determination to cut vegetables for the salad or spoon gravy with my inept left hand. During the particularly stressful month to follow, The Claw occurred several times. Each time the stickiness and pain lasted for a period of three days. But it wasn't just happening in my right hand; one episode involved my whole leg, and another the single first joint of my pinky. I finally went to see my doctor one time in mid–Claw and he ran several blood tests.
The doctor called back the next morning with the results. He had become a good friend over the years, treating me for a different illness every few months. He said, "You always keep me on my toes." The ease and frequency with which I would get sick, the fatigue, the joint pain and The Claw were all explained in a single diagnosis. I wrote it down, spelling it wrong. Systemic Lupus Erythematosus. An autoimmune disorder. "We'd like you to see a rheumatologist."
Details of experiences
accumulated over my life
have been dissipating
behind a kind of fog I can't
Shock. Horror. Exhilaration. I wasn't a hypochondriac. I wasn't simply lazy. My body was exhausted from fighting itself all the time. The aches had a cause — bruising from an inner war. As one doctor explained, these were all symptoms of a "dyslexic immune system" which would attack healthy cells — in my joints, in my organs — mistaking them for the enemy and leaving the real viruses with free reign over my system. I think of it as my immune system being fooled by a self–created bait and switch.
In lupus, the immune system is constantly working as though it is fighting illness. This causes fatigue. But because the immune system is busy destroying healthy cells, the body is left with no line of defense from the illnesses that a normal person's immune system would easily ward off. In my body, its mistaken attack on joints caused the pain. But lupus can affect every part of the body, and symptoms vary from patient to patient. Manifestations often include (but are by no means limited to) bouts of fatigue, arthritic activity, rashes on the skin — often in conjunction with hypersensitivity to the sun — and vital organ damage (especially to the lungs and kidneys), which can be life threatening. But the randomness of the immune system's attack on the body makes diagnosis difficult. Surveys have shown that it often takes at least four years of symptoms before a lupus patient is properly diagnosed.
There is no cure, only a roller coaster of symptom activity, flares and remissions. Stress triggers symptoms, but the cause is unknown. Lupus may or may not run in families. The medical community believes lupus occurs as a combination of a genetic pre–disposition and an environmental trigger — although the kind of genetic make–up and what triggers it are additional parts of the mystery.
According to Daniel J. Wallace, author of The Lupus Book, in spite of being under–recognized and often misdiagnosed, "lupus is more common than better–known disorders such as leukemia, multiple sclerosis (MS), cystic fibrosis and muscular dystrophy combined. And those who develop lupus do so in the prime of life. Ninety percent of these sufferers are women in their childbearing years." Women like me.
In spite of being under–recognized and often misdiagnosed,
"lupus is more common than better–known disorders such as leukemia, multiple sclerosis (MS), cystic fibrosis and muscular dystrophy combined."
More than a year after my diagnosis with lupus — after the strange elation felt when sharing traumatic news with loved ones, after the depression and fear that I'd been handed an early death sentence, after the acceptance of lupus's place in my life, after the deep appreciation that I had a fairly mild case that responded to medication, and after a series of similar fog–filled events following the difficult Age of the Dinosaurs exam — I mentioned to my rheumatologist that I'd been forgetful."We don't really understand how it works, but such mental fatigue, shall we say, is common with lupus patients. Some call it lupus brain fog," he explained. Apparently the brain is just another organ under attack.
Perhaps my steel trap is still intact, but the lupus fog sneaks through the bars and conceals information just moments old and uncatalogued, unused information and even some of what–was–once–so–clear. My fear is that the memories of my life are being subsumed by the vapor and may never return. I'm struggling more and more to find the words I want. And it takes longer and longer to find them. My husband swears I'm forgetting conversations that I had just a day or two before. I used to quote his words back to him during arguments: "'No, you said this.'" Now sometimes I think, we talked about that?
But this is more than losing mere conversation details. Memory matters. I am my mind. This is where I hold my life. I am a writer. My mind is how I make my living, how I share and quantify my life. And I want back what is missing. The doctors know the culprit, they know its M.O., they know it's out there stealing history, stealing friends, stealing experiences. But there is, as of yet, no plan to track down Lupus the Thief because, right now, all forces are trying to catch the same culprit for murder, for destroying kidneys, lungs, joints and skin. Death, of course, takes precedence over confusion.
Driving past the foggy train tracks on the Northwest Expressway, I roll the window down and scream at the fog but it swallows the sound. I turn up the car radio to drown out the anger. My frustration with the fog reminds me that it was clarity I was looking for in Oregon. I was hoping to find my history here, lost images of my past caught in the wild bushes and tall evergreen trees that remind me of Elk Creek Ranch, my family's summer vacation spot for three generations. "I think there are places that are too close to your heart to write about properly," I said to a friend who urged me to record my memories of Elk Creek.
But the truth is, for all the love I hold for that place because of the time I shared with my family there, for all the sanctity that the mountainous retreat holds, I can barely remember any specific occurrences. Shadows. Flashes. Pictures in our photo albums bring some of the more recent times to the forefront of my consciousness. I can recount the moments that have been retold so many times they are legend, but those are few. It is as if my most precious moments with family, the truest part of my self, have succumb to the haze.
I think about Elk Creek as I pull into my driveway and get out of the car, staring across the street into a fog–filled field lined with pines. I think about how I put off working on the memoirs I've wanted to write for so long until conditions were just right, until I had the time, until I found my home here in the Northwest that cradled my senses with just the right kind of wildness — geese in the air, rain on the tongue, scent of evergreen in the nose — to inspire me. And now, in spite of these perfect conditions, or because I waited too long for them, "until" came too late. The rain and clouds and thickly trunked trees will inspire me, but I must look to pictures and journals and calendars to recreate what I know was wonderful, but cannot emotionally or intellectually revisit.
"Write about what you love," my husband says. "Write about that time when …"
Listen, I tell myself as he talks. Try to remember.
A moment passes and I look up.
"Did I have a good time?"