Lost Days

Chagrin Metropark in January 1992

It was Wednesday, August 13th. The cat prodded me out of bed somewhere after 8 AM, as she usually does if I haven’t yet gotten up to feed her. I stumbled downstairs, scooped some kibble into the bowl, and crawled onto the sofa.

The next thing I knew, it was 11 a.m. I had slept for almost twelve hours.

People don’t recognize this as a warning sign. My housemate used to say “Oh, good: you slept in.” My husband’s response when I brought him his coffee and said “It’s 11 a.m. and I just woke up,” was “So? I usually wake up then.”

My husband routinely stays up until three or four a.m., and in fact I usually wake him before ten, but it wouldn’t be at all strange for him to sleep until 11:00. For me, however—even if I did stay up until three, I would normally be awake before the cat came to drag me downstairs. I’m one of those people whose body is used to getting up at a certain time, and if I need to catch up on sleep, I do it by taking a nap later.

So if I wake up at 11:00 a.m. and I haven’t been traversing time zones, my body is saying “Houston, we have a problem.”

I ate breakfast, which seemed to be an excruciatingly slow and difficult process. I sent a text message to the person I was supposed to be meeting with at noon, saying I wasn’t going to be able to make it. And then I went back to sleep on the sofa for a few more hours, until it was time to drag myself up for lunch.

And so it went, for the next seven days.

After more than 22 years of these episodes, it wasn’t hard to figure out what was wrong. And after more than 22 years of these episodes, I’ve learned that there’s nothing to be done but wait them out. I had a convenient stack of recently-arrived novels that disappeared during the moments I was simulating consciousness. Otherwise it was a slow rotation between bed, sofa, and kitchen, spent mostly sleeping and otherwise dreaming awake.

My husband gets frustrated, impatient, anxious. I’ve been all those things. Also terrified, furious, despairing, defiant—but usually afterwards. There’s no strength left for emotions once I get sucked down into this oblivion. There’s no strength left for anything.

And anyway, most of my brain seems not to be there, so I’m only aware of things at a distance and I have trouble remembering what I was doing the day before, much less anything anyone said to me a week ago. It’s hard to be present enough to have a conversation. There’s no point in my looking at my computer, because my brain is barely capable of distinguishing spam from real mail, never mind actually responding to anything.

Frightening? Well, not anymore. In the beginning, it was absolutely terrifying to have my brain disappear between one day and the next, to be unable to comprehend something I’d been working on the day previously. Now it’s bloody inconvenient, but as with the migraines, I know it will pass.

And at least it doesn’t hurt.

But it does effectively take me off the planet for anything from a couple of days to a couple of weeks. Not that often—not nearly as often as I have migraines—but unpredictably. The combination of the two is certainly enough to ensure I’ll never have a 9-to-5 job, though after so long being self-employed, I can’t imagine I’d be able to tolerate one even if I were restored to perfect health tomorrow.

The Lost Days are inconvenient and frustrating. They cause me to miss things I was planning to do, and they cost me money because I lose a lot of billable hours.

But they are absolutely trivial compared to the first five years of my illness, most of which were spent feeling much worse than I did in the week between August 13th and August 20th of 2014.

You may ask yourself, “Well…How did I get here?”

Sallie Goetsch 1991 (with muscle definition and Ghost dress)
Admiring my muscle definition (and showing off my Ghost dress) in 1991.

It was the end of 1991 and I was a 24-year-old graduate student in Classical Studies at the University of Michigan. I was at the peak of my physical and mental abilities. I ate three healthy meals a day, exercised five days a week, slept eight hours a night, was professionally successful, and had lots of friends and an active social life. I hadn’t had so much as a sniffle for the past year.

Admittedly, I hadn’t always had such a healthy lifestyle: I’d eaten way too much sugar and exercised way too little in my younger years. But there was certainly no reason to for me to expect to get sick when I did.

My best guess at the biological reason is that I may have some kind of genetic predisposition that got set off by exposure to some sort of trigger: a chemical, an illness, who knows? (Cosmological reasons? I can think of plenty.)

It’s hard to pinpoint exactly when it started, and impossible to know what triggered it. Hindsight provides possible foreshadowings, no more. I was violently ill on the last night of the conference in Chicago at the end of 1991, but put that down to food poisoning—which is all it might have been.

There was the routine visit to the gynecologist where she reported a blood pressure so low that I wondered aloud whether my heart was still beating, but she said only “You’re not very big, you know.” (She meant heavy: I’m five foot seven, which is a respectable enough height.)

There was the walk in the Metropark on a visit to my parents, from which I emerged more breathless than I would have expected, given that all I was carrying was my camera, and it was a routine and far-from-strenuous hike.

But those things and the occasional circles under my eyes barely flitted across my consciousness. I was still lifting weights five days a week, still conducting my normal, active life, and having a good time at it, too.

And even when I got sick, I didn’t suspect anything. I was in graduate school. The only place that colds spread faster than college campuses is preschools. It was annoying that I’d caught the campus cold, but not alarming.

Except that I didn’t get better.

And I didn’t get better.

After about three weeks I finally stumbled along to Health Services with my exhaustion and disturbed sleep and low-grade fever and swollen glands and sore throat and muscle aches.

The doctor, who was overweight and wheezed, remarked on my low blood pressure, but I dismissed that comment. I was far more aware, as most people are, of health problems associated with high blood pressure. Why would low blood pressure be a problem? The word the doctor used was an old-fashioned one: neurasthenia. A word congenial to Greek-speaking ears, but I didn’t pay a lot of attention, because of course this wasn’t serious. Of course I was going to get better.

Then the doctor said “We’re going to test you for mono and we’re going to test you for CMV and we’re going to test you for Epstein-Barr.”

And I said, being young enough and arrogant enough and naive enough to think I was supposed to be in control of my life, “I can’t have mono. This is my prelim semester.”

Just as an aside, if I presented with those symptoms today, in Oakley, I’m sure they would test me for West Nile Virus, but it was 1992 in Ann Arbor, Michigan, and I’m not sure whether West Nile had even made it to America. And trust me, there is not a mosquito breathing in Ann Arbor, MI, in February. (Nor a tick: the other thing that often produces symptoms of that sort is Lyme disease.)

The tests were negative. I started dropping things I picked up, and bumping into door frames. I’d never been a marvel of coordination, but my reflexes seemed to have disappeared entirely. I didn’t dare drive. My brain was lost in fog. I slept during the day, and woke feeling I’d been unplugged at the brainstem. (“Is that white thing over there my hand? I wonder if I can move it?”) I woke every hour during the night, soaked in sweat. I hurt everywhere. If I sat or stood too quickly, my vision grayed out.

I went to the hospital for more tests. So much blood. I need that blood. I’m faint enough as it is. All the tests came back within normal tolerances. Of course there was no healthy baseline for most of them, because who gives those tests to a healthy person? So there was no way to tell whether the results were abnormal in comparison to what they were supposed to be for me.

Ωμοι πεπληγμαι καριαν πληγην εσω!

Panoramic photo of the theater at Epidavros
Panoramic photo of the theater of Epidavros, where I studied in 1990. (photo from Dollar Photo Club.)

(Apologies for the lack of diacriticals there: I didn’t want to load a Greek font just for one line.)

For the barbarians—a “barbarian” is, literally, a person who doesn’t speak Greek, and therefore makes unintelligible “bar-bar” sounds—that’s line 1343 of Agamemnon. This is Agamemnon’s cry when his wife Klytaimnestra whacks him with an axe in the bathtub: Omoi peplegmai kairian plegen eso!

That’s usually translated something like “Alas, I am struck a fatal blow within,” which doesn’t quite convey all the nuance. I’m pretty sure that even if you don’t read Greek you can see the linguistic redundancy in peplegmai…plegen, but though English has some similar constructions, we wouldn’t say “Struck a striking” or “hit a hitting” or anything else that conveys the repetition and remains good English.

However, I digress.

I use the phrase mainly because my fellow grad students and I quoted it in regard to any dramatic occurrence, including falling in love. “Ωμοι πεπληγμαι!” And it was and wasn’t appropriate to developing a debilitating chronic illness in my prelim semester as a student of Greek tragedy, because I’m not exactly sure whether there was a καριαν πληγην, and if so, what it was. Who notes down the exact moment she gets a cold?

It was months before I had enough strength for rage, or grief. Outbursts of more than 30 seconds exhausted me. I thought maybe something was wrong with me, emotionally, that I was responding so numbly to such a catastrophe. But I was just too weak. Sometimes it felt like I was too weak to breathe.

But I was a student of tragedy. And I was twenty-four years old. Feeble I might have been, and confused, and dispossessed of most of my intellect, but I was not about to pass up an opportunity for drama. (And I could dramatize it in my imagination just fine: I would be homeless, or end up on welfare.) So yes, indeed, I proclaimed it to anyone who would listen: Ωμοι πεπληγμαι.

The Mystery Illness

When all the test results came back negative, I went back to see the original doctor at University Health Services. He suggested that there was something he’d heard of that it might be, and that there was actually a specialist in this rare condition at the U-M hospital, and that I should make an appointment, since there didn’t seem to be anything else we could do, and I hadn’t notably improved any.

Easier said than done. The specialist was evidently a busy man, because I had to wait four weeks for an appointment.

I sat on the sofa and stared at the wall when I wasn’t sleeping. I couldn’t concentrate well enough to read, and I’d found that trying to watch movies on the VCR (remember VCRs?) was too much of a sensory overload. I may have listened to music. A friend brought me a coloring book and some paints one day.

Sallie with whiskers painted on her face

What strikes me about this picture is not that I don’t look sick. I never look worse than a bit washed out and hollow-eyed. People with my condition make jokes about it. Certainly if I had a dollar for everyone who’d ever said “But you don’t look sick,” I wouldn’t need to worry about how I was going to make my Kaiser payments.

No, what really struck me when I unearthed this photo was that I’d taken the time to put on makeup, jewelry, and a sexy outfit when I was almost too sick to stand up. This would be on account of the fact that the friend who brought me the paints was an attractive young man whom I hadn’t seen for some weeks. It seems completely ridiculous to me in retrospect, given the number of other visitors I’d met in my raggedy pink bathrobe.

The specialist was a disappointment. I had to walk farther (through the hospital) to get to his office than I’d had to walk since I’d gotten sick. He said that by definition I couldn’t have the condition he studied, because I hadn’t been sick for six months yet, but I could fill out this 30-page survey for his research. (I think I did, eventually.)

It was expensive, too. Not covered by my student plan.

I think I had something of a tantrum. I know I had something of a meltdown. I dissolved easily. I didn’t seem to have any defenses.

Without knowing what was wrong with me, it was impossible to know how long it might last, or what to expect. Would I be back in the specialist’s office in six months? I hoped not. Would I be back to normal in six months? It didn’t look all that hopeful. Nevertheless, I was determined that I would eventually get over the Mystery Illness, as I ended up calling it.

People avoided me because they didn’t want to catch what I had. It turned out that it isn’t contagious, but how could they or I know that at the time? And, as it happens, no one is actually sure how you get what I have. That’s actually a lot scarier than tick bites or mosquitoes. How can you defend against an unknown vector?

Eventually, even before I had a diagnosis (never mind any medication to mitigate symptoms), the crushing weakness began to recede, at least some of the time. There were days that the fog cleared out of my brain. Days that I didn’t trip over my feet walking down the street. (Days I could actually get as far as the street from my third-floor apartment.) Days I could read. Days I could read Greek. I finished my prelims, though the faculty was kind. (I looked back later at what I’d written.) I took up my very prestigious fellowship and proceeded (between periods of collapse) to do some remarkable things. I even did some tolerably good work on my dissertation.

But there remained a lot of Lost Days. Days when I was not only physically very weak, but mentally not really home. Days when the height of my achievement was to play solitaire with the computer. (I couldn’t remember how to play solitaire with actual playing cards: dealing them was too confusing and required too much coordination.)

Something Chronic: Myalgic Encephalopathy by any Other Name

(WT-shared) 2old at wts wikivoyage [CC-BY-SA-3.0-2.5-2.0-1.0 (http://creativecommons.org/licenses/by-sa/3.0)], via Wikimedia Commons
Cleveland Clinic, photographed by Mike Sharp, from Wikimedia Commons
So I got better…but not all that much better. And after a while I reached a sort of a plateau, but I was concentrating on other things, like trying to write my dissertation, so I didn’t really notice that, until one day my father pointed out to me that it had been a long time since I’d shown any noticeable improvement. Since I hadn’t had any luck at the U-M hospital, he suggested I go to the Cleveland Clinic to get checked out.

This was, initially, not the most successful of experiences. The internist I saw there was almost certainly the inspiration for the saying “The difference between God and a doctor is that God doesn’t think he’s a doctor.” And no, I was not imagining his attitude. I’ve seen his notes. They say, in essence, “Depressed hysterical female.”

Physical exhaustion, as I mentioned above, interferes with the ability to experience or express emotions. But I did attempt to explain to this doctor that what I wanted was not to commit suicide, but to get my life back. It didn’t make a dent.

(Actually, there is a good quick test to determine whether any particular episode of paralysis and inability to function results from M.E. or from depression. Try some exercise. If you feel better afterwards, the problem is depression. If you find yourself with fever and muscle aches and unconsciousness, then it’s M.E.)

The positive result of this infuriating encounter, however, was that Dr. Insufferable referred me to a psychiatrist. The psychiatrist happened to be a woman, which probably helped in the common sense department. I was actually feeling better on the day that I went to see the psychiatrist than I had been on the day that I’d gone to see the internist, which probably helped in the Sallie’s-credibility department. (It was after that I made myself a new rule: never see a new doctor for the first time when you’re feeling sick.)

The psychiatrist interviewed me fairly extensively and concluded “You’re obviously not suffering from primary depression.”

I hoped that diagnosis would make its way down the hall to Dr. Insufferable.

Then she added “It sounds to me like you have Chronic Fatigue Syndrome, so maybe we should try treating you for it.”

Ask anyone—even doctors—and you’ll get an earful about what an appallingly trivial name that is for an illness characterized by a weakness only we and cancer patients feel. One doctor—the one who invented the only blood test that shows anything unusual—points out that “fatigue” is by definition the result of exertion, and no exertion is required for people with this condition to experience total depletion of energy.

We’d never have been stuck with the name if Yanks weren’t so darned provincial, either. Dr. Melvin Ramsay had come up with an accurate description of Myalgic Encephalomyelitis (so named for its apparent similarity and connection to Poliomyelitis) in 1955 at the Royal Free Hospital in England. The criteria are more extensive than those for Chronic Fatigue Syndrome, first published by the Centers for Disease Control in—wait for it—1988.

I can tick all the boxes in Dr. Ramsay’s original description of the illness and the modern definition of M.E., which is usually now understood to stand for Myalgic Encephalopathy. The boxes are an assortment of muscular, neurological, and immune symptoms in addition to the crushing exhaustion, all of them made worse by (aerobic) exercise.

I wasn’t far wrong in calling it a Mystery Illness, though. To this day nobody knows very much about it. It’s a rare, non-fatal illness for which there’s no nice definitive diagnostic test, and while I am actually the kind of patient pharma companies like (since I’ll be taking medication until I die or until my liver and kidneys give out), a breakthrough discovery leading to treatment or cure won’t have all that many customers worldwide. It’s not precisely the hottest, best-funded topic in medical research.

Nevertheless, every few years someone produces something that sounds interesting until it turns out that no one can duplicate the results, or there isn’t money to even try to duplicate the results. But many of the theories seem to contradict the other theories, and there’s a good chance that not everyone with my diagnosis even has the same disease. Most of the symptoms are, after all, common to a number of different illnesses.

Treating it, at that time (1993?) amounted to low-dose Prozac, which was supposed to boost my energy level. It did, a little. It also took the edge off that vaguely feverish feeling that I had even on the occasions that my body temperature swung through 98.6 on its way between 97 and 99. (I was still taking my temperature several times a day.) But it didn’t make me well.

The best thing that getting a diagnosis actually did was put me in touch with patient advocacy groups, where I could talk to others with the same condition. This was the olden days, remember. Today they probably have Facebook groups, but what we had then was newsgroups email listservs.

CFS-L was a sanity-saver. It was also the first place I learned about most of the medications that I take today to keep my symptoms under control. I was actually a moderator for a little while, but that was years later.

In the meantime, I started to learn something about what it means to have a chronic illness, which brings me back to Greek.

I read somewhere (possibly on CFS-L and possibly in a book—memory problems are one of the symptoms of this illness) about a phenomenon I’d already observed: compassion fatigue. Human beings generally respond very well to crises. If, for example, you break your ankle crossing the street in Greece (this happened to me), strangers and bare acquaintances will help you get to the hospital and then find a hotel and so on.

But the impetus to take care of someone else’s problems wears out. People are drawn back into their own lives and their own problems. They expect crises to be short-lived. (The word “crisis” actually means “decision” and should, indeed, be something sharply bounded.)

And those who actually live with someone who suffers from a serious illness, particularly if they act as caregivers, literally get worn out from the effort. Even in my oblivion, I recognized that my illness had to be worse for my parents than it was for me. They were my parents: they felt they should be able to make it better, and they couldn’t.

There were many friends who were actually taking care of me when I was sickest: going to the grocery store, driving me places, and so forth. Those people were mostly folks who operated from a strong service ethic, and they didn’t seem to get tired of it, or impatient. Also, there were enough of them to distribute the labor. I paid an assistant to go to the library for me to get books.

But a lot of other people, many of them related to me, seemed to think it was really high time I got well already. “Are you still sick?” they would say incredulously.

“Well, yes,” I would respond, a bit baffled. “That’s what ‘chronic’ means.”

I was still hoping to get better, if not well, but it had become clear that wasn’t something that would happen quickly. I was now hoping for substantial improvement in five years, rather than total recovery in a few months.

The opposite of “chronic” in medical terms is “acute.” If you are a doctor, “acute” pain does not mean “sharp” pain. It means pain that is short in duration. An ordinary person might use the word “acute” interchangeably with the word “severe,” and attempt to speak of “chronic acute headaches,” but a doctor will not.

For some reason, English adopted the Greek word for “duration of time” (chronos), but not the Greek word for “moment in time” (kairos) so we don’t say a “kairic” illness. And though the English word “time” is cognate with the Greek word meaning “to cut” and originally meant “a division of time,” and was, therefore, equivalent to kairos, by the 14th century it also came to mean “duration of time” and whatever word English speakers used to use for time in the indefinite sense dropped out of the language.

Chronion means “lasting a long time” and a chronic illness is one that lasts a long time—though not necessarily indefinitely. (Twenty-two years and six months seems pretty indefinite to me, though, and far longer than I expected, back then. Certainly long enough to qualify as chronion.) That’s the one part of the name “Chronic Fatigue Syndrome” that’s actually accurate.

“Myalgic Encephalopathy,” by the way, breaks down to “There’s something wrong with your brain and it makes your muscles hurt.” Very true. I ached every day for years. And years. Worse in the cold, no matter how warm the room was.

Oh, and “neurasthenia,” that the doctor from University Health Services mentioned? Asthenia is weakness and you know what a neuron is.

If You Want to Make God Laugh…

Sallie Goetsch in Warwick in 1997
On my way to see Lysistrata in Warwick in (I think) 1997.

If you’ve read my post on failure, you know that I did not intend to let a little thing like having M.E. get in the way of my ambitions. I’d been through a truly brutal winter, in constant pain from the cold, though I was starting to get some relief from the sleep disturbance thanks to evening doses of Amitriptyline. Sleeping through the night was a relief, but I was groggy in the mornings. I wasn’t making nearly the progress on my dissertation that I wanted to, and it was hard to convince myself (never mind my dissertation committee) that I was going to finish in time or hold down a job.

I moved to England. For the weather. And also the fellow theater scholars. And maybe a little for the NHS.

The milder weather was a relief. And eventually I switched from Amitriptyline to Trazodone, which worked just as well but let me wake up clear-headed. And in one of the patient organization publications (I can no longer remember whether it was the CFIDS Association or the ME Association) I read about Neurally Mediated Hypotension, or why I was always on the verge of passing out.

I showed the article to my very nice, clever, sensible, much-put-upon NHS doctor, and she decided that we really didn’t have to put me through a tilt-table test: we could just try me on Fludrocortisone, and see whether it helped. It did. I no longer have to hold onto walls, though I sometimes still wake up with the soles of my feet tingling and have to be careful not to move too suddenly until the meds kick in.

All of those things helped. But they didn’t make me well. I was teaching, a little. As in one class per term little. I think maybe two, one term. I could work perhaps 8 hours a week, and spent most of the rest of my time in bed. I did some interesting things, among them teaching myself HTML back in the early days of the Web.

“The first ten million years were the worst,” said Marvin, “and the second ten million years, they were the worst too. The third ten million years I didn’t enjoy at all. After that I went into a bit of a decline.”

Douglas Adams, The Restaurant at the End of the Universe

I think of that quote often, in regard to M.E. generally, and specifically to the Lost Days, the times when I’m sickest.

I think of it because the worst days always seemed interminable (and sometimes still do), but also because I developed a case of negativity that could have given Marvin a run for his money.

Mind you, it’s difficult not to. Grief, anger, frustration—all of those are inevitable. But I definitely behaved badly in those first and worst years of my illness. Though I did experience a few moments of reduced arrogance and increased compassion, I did not exactly take my illness as an opportunity for spiritual development. I mainly took it as an opportunity to develop a massive case of self-pity. And entitlement. And resentment.

I managed, just barely, to avoid succumbing to depression. I knew that would kill me, so I forced myself to find value in my life despite drastically changed circumstances. But I was so often unable to do the simplest things that I regularly felt like a poor excuse for a human being.

I was not a horrible evil person all the time. But I could certainly be a whiny brat. I did my best Damsel in Distress imitation, waiting for someone to rescue me, wanting someone else to be emotionally and financially responsible for me. I blamed and sulked and made entirely too many of my decisions based on fear.

I suspect that none of this was actually very good for my health.

In any case, at the end of four years, I was not better. I was worse.

I was going to have to return to the States, and I wasn’t able to work. And I’d learned that I’d actually be very fortunate to be able to get disability benefits, because of the nature of M.E. and because I’d been a student when I got sick. I didn’t have any credits in the Social Security system. Without Dad Ex Machina and the family members who gave me a place to live, my nightmares of homelessness might have come true.

Returning to Life

pollarded treses on the UC Berkeley Campus
Pollarded trees on the UC Berkeley campus in winter. Date uncertain but pre-digital.

It was late 1998 when I moved to California, and initially my health got worse—a Transatlantic move takes a brutal physical toll. But things started to change.

First, I got some emotional help with the trauma caused by the illness and everything that had happened around it. If you need therapy, there is not a better place in the world to be than Berkeley, California. The NHS had been a blessing, but Britain is not exactly on the cutting edge of mental health. I found a frankly brilliant therapist who was extremely helpful and eventually helped me take more responsibility for my own emotional well-being.

I started taking a chronic pain management class through Kaiser Permanente. It was difficult at times, but it did help. And it introduced me indirectly to the idea that putting my energy into complaining about being sick wasn’t helping me to get well. I stopped spending so much time whining to all and sundry about the terrible unfair thing that had happened to me.

I took some more classes through Kaiser, including one on mindfulness and relaxation. I began to distinguish between simply being in bed and actually resting or meditating.

I had some neuropsychometric testing done and finally got proof of what I’d known for years: my brain is not what it was. My vocabulary is essentially unimpaired, except for the episodes of nominal aphasia. But my fine motor control is impaired: I cannot draw a simple shape that I see because my brain doesn’t translate that shape to my hand correctly unless I exert superhuman force and concentration. Or use a ruler. (I was once artistically gifted and this was painful to discover when it first started happening. By the time of the tests, it was merely fascinating to see in action.)

It takes me a long time to perform what should be simple tasks, though I can do them accurately.

I can still memorize things, but I cannot form memories or perform mental tasks if I am interrupted. I had no trouble learning my new phone number (which my very bright husband still does not know), but don’t ask me to do something when I’m in the middle of something else—one task or the other will be forgotten or abandoned. I run my computer programs full screen and I turn off all notification sounds. I don’t want to be distracted by something I see in the corner of my eye when I’m working. I will stop and check my email or look at my Twitter later. I used to have a land line phone I could set to “Do not disturb” and I wish I could do that with this one.

I don’t think all that well on my feet, so I prefer to communicate in writing rather than on the phone. (Also I am very visual: I will do better in a video conference than a phone conversation, if you need a live conversation.) I am still smart, but I am not fast. I have a brain like a Ferrari stuck in first gear.

In 1999 someone on CFS-L mentioned how much Neurontin had helped with her pain. I was still in pain quite a lot, though it was more manageable when I took regular rest breaks and paid attention to what was going on with my body. I talked to my then-primary care physician about it and she agreed to try it.

A remarkable thing happened as I increased the dosage. Not much changed in the pain department (Neurontin is good mostly for neuropathic rather than muscle pain), but I found I could focus better. I had more energy. I was more resilient: I recovered more quickly from exertion. Instead of needing a week to recover from a long day, I might only require a day or two.

Checked against my newly-acquired body scan meditation techniques, I didn’t feel speedy or strung-out. I just felt more like myself than I had for years.

It was miraculous.

I started to be able to simulate a normal, albeit very sedentary, life. I began to work again in 2000, very cautiously. For the first two years I worked as a caregiver. That seemed spiritually appropriate, but also, the only things I felt sure of being able to do were simple household tasks. I’d failed at so many long-term projects involving my intellect that I was gun-shy.

Eventually, I began to bring more and more of my skills into play in my work, and evolved through my multiple business personalities to what I’m doing now. I adapted my environment to make it easier for me to work, to maximize my physical comfort and minimize distractions.

Most of the time, if I think about my health, it isn’t even in reference to the M.E. It’s migraines, or perimenopause, or dental problems, or vision, or the bursitis in my hip that’s a present from Highway 4, or things that might affect anyone who’s sedentary and getting older. People are a bit surprised to discover I have a disabled parking placard.

On a day-to-day basis, the M.E. isn’t really an issue.

But there are going to be days when I wake up and I know that whatever it was I’d been planning to do, it isn’t going to happen.

I know now what I didn’t know in 1992: it will pass. The weakness will pass. The fog in the brain will clear. Trying to fight it only makes it worse, so I only rouse myself for emergencies: are we out of food? Is someone bleeding? Is something on fire? No? Then it can wait until I feel better.

So Why Write This Insanely Long Blog Post?

vineyard on Walnut Meadows
The vineyard across the street, parched in the drought

It started out as a few paragraphs just to say “Yeah, I fall off the planet sometimes, but I’ll always come back eventually.” But the actual experience of spending a week dreaming awake is a strange one, winding down rarely-traveled avenues of memory and speculation, sending me back to look at things like the photos of the Metropark, or the text of Agamemnon, or even the book about M.E. that had just been published when I moved back to the States.

One of the things that crossed my mind was “Has it really been that long since I got sick?” And yes, it has.

I would have been utterly crushed to imagine that, so it’s a good thing I never did.

It hasn’t been crushing though, on the whole. Other than that first ten million years, I mean.

The Lost Days are inconvenient. I’d be happy never to go through that again. I’d be delighted to wake up tomorrow and be completely well. I don’t care that it wouldn’t bring back the years I’ve lost, the youth I never had. 

But the Lost Days always pass, and I dig my way through the backlog and get back to my life. And my life, in spite of looking nothing like I planned it to when I was twenty-four and ambitious and naive, is in fact a pretty decent life.

For that matter, I know people who have made pretty decent lives with much crueler illnesses than M.E. Those two years as a caregiver taught me how much worse off I could be.

So if your life has been derailed by illness—at any age—it can get better. I won’t guarantee that it will, but it is possible that a life that’s nothing like what you planned on might still be worth living.

Even if it gets interrupted now and again.

WordPress fangirl, ghostwriter, linguistic alchemist, podcast consultant, and accidental vapor advocate. Married with 2 cats.


  1. Wow Sallie, that’s very powerful writing. Thank you for sharing – it helps to know what you’re going through.

  2. Sallie,
    Thank you so much for this amazing blog post. I had no idea of the scope of what you contend with — just had pieces of the puzzle. I have even more appreciation now than I have in the past of all you accomplish, the presence you provide, and the sheer brain power you bring to the table. It continues to be a pleasure to work with you. Hugs,

  3. An excellent piece that I wish you hadn’t had cause to write.

    It deserves a larger audience (even more than your unexpectedly popular personal blog), since I bet it would be a balm to many people. Maybe put a version on Medium, or Scribd?

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