Losing My Voice

A conversation at our house recently:

“So when you think of things that the illness has cost me, things that were a big part of my identity, things that I loved to do, what’s the first thing that comes to mind?”

“That’s easy: Control. I mean, I don’t mean that in a negative way – you are very detail-oriented, just as much as I have my head in the clouds, and I know it’s been really hard for you not to be able to have your hands in things, because you enjoy managing every aspect of a process and you’re very particular about how things should be done.”

I looked over my glasses at Chimp. “Because I was going to say singing,” I said.

“Oh. That too. Your singing is the one thing that would make me cry.”

“Nice attempt at a save.”

I don’t remember a time when I didn’t sing. I was the character in ABBA’s “Thank You for the Music”: Mother says I was a dancer before I could walk/ 
She says I began to sing long before I could talk.

Dance lessons I took, but singing I just did, standing on my bed, choreographing show-stopping numbers in which I starred, backed by an imaginary cast of thousands, to my day’s choice of record on my Fisher-Price player. My main aspiration was rock star…possibly actress. I remember watching Aileen Quinn’s performance in Annie in the cinema and thinking, with the egotistic boldness of childhood, “I could do that. I want to do that.”

But of course I was just a kid, and not a pro: In elementary school, I once blanked on a piano piece during a recital, and another year I flubbed a big line in my lead in a church musical because I’d been concentrating so hard on the line before it. The piano debacle reduced me to helpless tears afterwards – I didn’t love piano and my failure was just the cherry on the sundae of my struggle with its endless frustrations – but the line-flubbing I took in stride and just kept on going, because I did love singing and acting.

My mother, in these years, was mostly endlessly patient with me constantly singing along with the radio when we were in the car – including from beginning to end on at least one 500-mile trip to Indiana, as I frequently punched the buttons to find the best selection of the moment. From time to time I did get asked to turn it down because of the occasional “headache,” but not often. My long-suffering mom, by the way, had been in band, and wouldn’t I like to be in band too? No, sorry Mom, nothing duller to my childhood sensibilities than being one of a hundred people behind instruments – more egotistic boldness here – I wanted to be center stage.

I had been in the school choir for four years by the end of 8th grade, but I was still only at best a very average singer. My high school choir director – Bob Stamback – was legendary in our state for a program beyond the average high school level. Usually, at the end of 8th grade, you auditioned and were placed in one of the two main ensembles: the women’s choir or the mixed-voice choir. But the year I was a rising freshman, there was an unusually large number of freshman women, too many to incorporate into the high school ensembles successfully. Because of that, Mr. Stamback announced we were to have a freshman women’s ensemble. And this decision changed my life.

"Uncle Bob" on a choir festival trip to Tennessee.

“Uncle Bob” on a choir festival trip to Tennessee.

There were twenty of us. If you’ve never sung in a choir, when there are twenty voices, there’s nowhere to hide. This started out slightly terrifying, as Mr. Stamback was generally good-humored but serious about our work and rather intimidating, despite being affectionately known to the choir kids as both Uncle Bob and Homer Simpson (see the photo at right and tell me you wouldn’t have coined the same nickname). Once I got comfortable with the fact that he was going to call on us individually all the time, I realized that beyond our ensemble work, we were effectively getting a group voice lesson every day. And at the audition at the end of the year, I actually could sing pretty respectably  – and landed a coveted spot in the mixed-voice choir for my sophomore year.

I loved the hour a day I got to spend there, because singing in that group, with the expectations he placed on us, could be massively exhilarating. My favorite piece we did in that chorale was John Rutter’s “Gloria” (a nice rendition of it below) – I remember coming to the end of its 20-minute length in one late rehearsal and sort of “coming to,” realizing my arms were shaking, there was sweat pouring down my back, and I had goosebumps all over – and feeling deliriously happy. There is something very special about that transcendent aspect of singing in a choir, about the end result of putting in the many hours of rehearsal to get each of the hundreds of details of a piece exactly right, and when every bit is perfected, there’s a magic to the unity of the singers’ cooperation that is beyond description. It’s a wonderful thing to feel like you belong in the midst of that and are contributing to it.

Individually, learning to sing from Mr. Stamback is truly one of the greatest gifts I was ever given. Gaining a foothold on that skill boosted my self-confidence, allowed me to begin to match up my abilities to my childhood aspirations and self-concept, and made me feel like I was actually somewhat talented. All of that was enormously meaningful to me. And I just got so much joy out of it, the joy you get out of becoming proficient in something to the point that it starts to become natural and almost effortless.

I used that ability every chance I got. I sang in choir; I sang for myself; I learned to play enough guitar so I could open more performance opportunities that way; I kicked ass at karaoke, and my childhood aspirations stayed alive long enough that I took my singing ability to NYU, where it made me a double threat as a drama major.

But even though I sang every day for many years, it wasn’t until I got sick in 2004 – and suddenly couldn’t – that I realized how important it was to me. When I first fell ill, I couldn’t sing because I didn’t have either the energy or the breath. Singing, I found, was one of those things that would eat up my energy very quickly. It takes a lot of breath to sing well, and if I tried, I would find myself gasping for air and the edges of my vision beginning to dim as my brain became gradually shortchanged on oxygen.

As I improved during 2005, I regained the ability to sing a bit, and for a while it was a barometer of how I was doing with the illness. I’d get a little worse and lose it, get a little better and get it back. But at some point – I think my summer 2006 crash, the one that stopped me commuting to the office – I lost it for good, at least thus far. Once I became bedridden at the end of 2007, another impediment to singing emerged – muscle wasting. If you can’t move around, all your muscles wither away, and that includes your diaphragm, the support of which is absolutely essential for singing.

Because I’m so out of practice and have no diaphragmatic support, I can wheeze out a creaky version of “Happy Birthday,” but that’s about it. I can only hit about an octave’s worth of notes in the bottom to middle of my range. Anything I might essay on the high end is just a shrieky, thin, unsupported whistle.

I said that I didn’t realize how important singing was to me until I couldn’t do it. This was for a couple reasons. The first is more prosaic and was more important when I was still working: Caffeine and I don’t get along, so my usual method of waking up in the morning was singing along to loud music while driving to work.

The other is a little tougher to explain. Singing was not just a creative outlet for me, but a way to deal with stress and emotions – and it was that aspect of it that I wasn’t fully aware of until I didn’t have it any more. I sang to psych myself up for the day, to relax myself on the way home, to deal with boredom, to celebrate when I was feeling joyful, to wallow in depressing music when I was feeling sad, to boost my confidence on difficult days, to sing harmonies to anything and everything because it made me feel like I was putting something beautiful and unique into the world, and to vent along with Elvis Costello when I was pissed off. And that, really, is only the beginning of how I used it. Pretty much anything I needed to deal with, I dealt with partially through singing as catharsis. And I can’t do any of that now.

Truthfully, I can barely even listen to music these days – it’s just one of many things that’s a major energy eater and difficult because of my cognitive dysfunction. When I do, the need to sing harmonies is still overwhelmingly there, but I can’t do it – and not being able to do it, having to just listen and not fulfill that need, is almost physically painful. There’s a profound, oppressive sense of loss. I feel cheated, feel wronged, feel like I’ve had something I earned and was entitled to cruelly stolen from me. I still love music, but because it’s painful to listen to and painful to have to not sing, I’m kept away from it except for at moments when I feel like I absolutely must hear a particular piece, and then I listen at low volume in snatches of a song or maybe two at a time. After decades of collecting music, I’ve lost track of the catalog of many artists I deeply love, because I can’t listen to an album all the way through.

Getting this back would make my life much richer, but it’s so far along the continuum of recovery that I despair of ever reaching that point. I’d need both my cardiac output and my muscle tone to substantially improve to get there. I would probably be well enough to work before I would be well enough to sing again, and getting from 98% bedridden to that point seems profoundly unlikely.

Sadly, I haven’t really found something to replace singing, and at this late date, I don’t expect I will. It was so much a part of my life for so long, and I used it in so many situations, that there just isn’t anything that’s analogous or as universally useful to me. Writing is probably closest, and perhaps the thing that I’ve been doing to deal with life second longest, but as helpful as it can be to put fingers to keyboard, it badly lacks the transcendent beauty of being able to raise my voice and thereby put my cares thoroughly aside.

Posted in Life Before, ME/CFS | Tagged , , , , , , , , | 22 Comments

Brain No Go So Good

“I’m writing an entry about my cognitive dysfunction, and I thought I’d ask you about whether there’s anything about it you notice. Wait, I asked you this last week, didn’t I?”
“Yes. And I suppose that’s an anecdote in itself.”

Perhaps unsurprisingly, a neuro-immune illness affects the functioning of one’s brain.

I was still well enough to be working at the office – which was the first two years I was ill – when I realized that I was gradually but very noticeably (at least to me) getting dimmer. It first became obvious because of a particular co-worker who was lovely to interact with, but usually a touch slower on the uptake on new concepts than I was. The longer I was sick, the more I realized that our comprehension speed was drawing nearer and nearer to being the same. And as I found us on a more level playing field, I regretted my previous impatience with her, which I’d always done my best to conceal, and felt a greater sympathy for her frustration when people (which had included me in the past!) ran through things too fast for her.

cannot brainWhen I look back at work I did in those early years, before my illness got so severe, I almost can’t comprehend that that it was once something I was able to do. As I tipped toward the ditch of the crash that ended my career at the end of 2007, tasks that were once effortless went more slowly. Technical materials that were difficult but understandable became a confusing morass. Things that were a challenge came to be nearly impossible.

Among other things, I was an Excel specialist at my last job, and I had been forever trying to encourage my colleagues to learn about the wonders of data analysis. It was something I loved, but not generally something that many others thought was fun. When I look at old workbooks now, I can’t even begin to get my head around their complexity. Some of this, admittedly, is just being out of practice, but some of it is that when I try to suss out an involved formula, my cognitive dysfunction means I lose my hold on element one before I get a grip on element four.

On top of that, I had long been a natural editor, and that’d been a sideline of mine in every job I’d ever had. When I read, errors would just pop out at me from the page, as if they were in 3D. As I got sicker, I had to read with effort to find errors, and now, I’ve lost the ability to see some types almost entirely. My eyes just skim right over them pretty often, and they don’t even register. These days, there are times when I’m reading that very basic errors of English – things like there/their/they’re – are something I have to think deliberately about. And my spelling skills have become terrible – I am constantly inserting the wrong vowels when I type, or unable to remember which silent letters are involved in a word, or I unconsciously I type a homonym with an entirely different meaning and then stare at it, trying to figure out why it doesn’t look right.

I also have a terrible time with aphasia, specifically word-finding. Aphasia is a funny thing – I have different problems with different parts of speech. Verbs are not generally a problem. With nouns, it’s like my search function is just slow, and even if the object is right in front of me, it takes my brain five or ten seconds to reach it in the mental lexicon. So I’ll say to Chimp, while holding an empty pill bottle, “Would you please bring me a new bottle of……betaine?” Even if he realizes what noun I’m searching for, he’s mostly kind enough to wait for my brain to try to come up with it, so that I don’t feel like an utter failure.

My uncommon-but-not-obscure adjective bank, on the other hand, seems to have almost entirely evaporated. If it’s not a word I use everyday, sometimes I’ll find myself saying to Chimp, “It’s an adjective that means so and so, and it’s sort of like such and such, but not this.” He can usually supply it, but if he’s not around, I might sit there for three minutes trying to think of it, and the odds are pretty even on whether I’ll eventually come up with it or not before resorting to an online thesaurus in total frustration.

My writing has also suffered, not least because of the language issues. I used to write a vegetarian food blog, She Spills the Beans (I moved it over from TypePad to WordPress, and I’ve never had the extra energy to go back and add in all the photos…apologies…they were not really very good anyway, so your mental images are probably better, honestly), and when I read those entries, I can both hardly understand them and hardly believe that I was the one who wrote things that complex and creative. I feel like I’m banging two rocks together over here by comparison.

Besides all the language issues, my long-term memory has gone totally to pot. I do sort of try to live in the present because of the illness, but the memory loss enforces it. There are so many times when Chimp will bring up some episode in our 16 years of shared history, and what he describes will sound familiar, as if it’s plausible that it did happen to me, but I can’t bring up an active memory of it – like it’s equally likely it could be a real memory or a created one. Just recently, I mentioned that my hairbrush was wearing out, and the next day he came home from the store with one. When I picked it up, he said, “Remember that we used to have one just like that?” I looked at it and – well – if he hadn’t said so, I don’t think I ever would have remembered that it was the case, but it gave the brush a definite feeling of familiarity.  However, without prompting, I think that would have remained utterly lost to me – and how many other things are?

But all of these issues are subjective, right? What about measuring all of this objectively? I’ve made an attempt at that. I had neuropsychological testing done during my absolute worst year, the year I couldn’t get out of bed at all, in hopes of validating how bad things had gotten, as part of my disability application. As the test proceeded, I could tell I was performing utterly terribly as compared to how I used to function, but frustratingly, I came out within normal ranges according to the tests. As Chimp has said, flatteringly, “The thing is, you were batting .400, and now you’re batting .300, which is no slack, but you’re constantly comparing yourself to all those years of .400.” My identity did use to be significantly tied up with my smarts. But thankfully, I have something else to focus my identity around now!

Not all of this is the illness, I know. Some of it is just getting a little older and thus having a longer period of memory, and some of it is that I’m loaded down, nightly, with a few soporifics that have psychological effects, and one of those has an especially bad reputation for turning one’s brain into cotton balls. I so wish I could drop that one especially, and see what my function is really like, but it’s keeping me alive. Cotton balls, unfortunately, for now, are the order of the day.

As symptoms go, though, the brain fog and memory issues, for me, are honestly some of the least bothersome. I do feel like I’m trying to cut the world around me with a butter knife a lot of the time, but it’s like that – annoying but not crippling. I would rather not have these problems, but there are a lot of other things I’d put on the list to get rid of first – with insomnia, cardiac output,  fatigue, sensory sensitivity, and temperature intolerance at the top of the list.

If you’re wondering about measuring your own cognitive function, there’s a pretty-manageable test to be found right here. Let me know what your cognitive frustrations are, or how you did, in the comments, if you’d like.

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New Bottle Paranoia Syndrome

One of the things that consistently makes life more exciting around here is my case of New Bottle Paranoia Syndrome.

My present state of NBPS has reached its current form because of a long series of unhelpful surprises my body has delivered me with when presented with medication. Pretty much all my life, I’ve been one of those people who gets at least one prominent side effect with any substance, and more side effects than average. Nothing as scary as an allergy, mind you – just a reliable tendency for my body to seem to put the prescribing information up on a wall and throw at least one dart into it. Vengefully. Like the fact that I’ve introduced a foreign substance is a huge insult, because I’ve implied it’s not doing its job well enough (which it really isn’t by any reasonable estimate) and in response my body is all she thinks she can just feed me pills? well I’ll show her who’s boss around here.

side effects

The first manifestation I can remember of this is dealing with the side effects of my Ritalin prescription as a kid. Yes, I was diagnosed with ADD relatively early – 1984. The drug significantly suppressed my appetite at lunch, and when I got home from school I’d be absolutely ravenous and eat a huge quantity of whatever crunchy salty thing was at hand. And in consequence, I spent the next 20 years trying to put a stop to that 3:30 bad habit.

The next significant pharmaceutical in my life was the Prozac I took to deal with some pretty bad depression in high school. As I’ve mentioned previously, it made me feel like I was living on the inside of a hamster exercise ball, but that was what it was meant to do. What it wasn’t meant to do was give me the shakes, constantly. Once when I was having a particularly bad day and just needed to go home and pull the blankets over my head, I went to the nurse’s office, held out my nearly-vibrating hands, and the nurse signed a dismissal slip for me right there. (I swear to god, Mom, this is the only time I did this.)

On the heels of that came the trouble with cold medicine. I had always had to be sure to take the non-drowsy type, because anything that wasn’t non-drowsy resulted in me needing to clear my schedule for a couple days to sleep it off. Then the first year of college, I took some of my usual non-drowsy stuff, which had always been fine up to that point, and it made me feel terribly jittery. So that removed both major categories of cold remedy from my life, and since then I’ve had to snuffle through colds with nothing but cough drops and throat spray. Which is uncomfortable, but at least it’s sort of an excuse to eat candy.

Around the same time the trouble with the non-drowsy cold medicine began, I realized that my childhood Ritalin no longer helped me focus, as it always had – it just made me feel unpleasantly wired. Same thing, same time, with caffeine. The occasional Coke had never been a problem, but now I found that it made me snappish and grouchy. So I crossed those two off the list too.

Then in my 20s came the several consecutive months of nausea when I first tried to take oral contraceptives, the visual migraine with the same where half of my vision blacked out for an hour (“Stop taking them immediately,” said the doctor. You don’t have to tell me that, I thought), and the crazy discovery that the Xanax I’d been prescribed for blood draws because of my needle phobia made me more anxious and not less. (“Paradoxical reaction,” they called it. “Sheer unmitigated terror” was my take.)

So that – all of that – is where NBPS originally comes from.

Because of those experiences, when I arrived at the overwhelming dizziness and fatigue that eventually proved to be the beginning of my ME/CFS one day in Chicago lo these many years ago, I think I can be forgiven for having thought that I’d had those two side effects pretty badly when I started the anti-androgen medication I was on at the time for acne, and that maybe it was connected to that drug somehow. Thus my first move was to drop the all the things I was taking – anti-androgen, oral contraceptive, multivitamin, calcium – and see if the symptoms went away. They didn’t, of course.

But once I dropped all those drugs, the anxiety I developed as one of the symptoms of the illness (something that Dr. Cheney thinks is due to a lactate peak in the brain) meant that I just couldn’t talk myself into taking anything new. So I didn’t – I literally took nothing for my ME/CFS from 2004 until late in 2007. I was just too terrified to put a pill in my mouth and swallow it.

What was I afraid of? I think it was mostly the looming unpredictability of what being chronically ill meant, something I’d never experienced. Part of me thought that I would get well by myself, as I always had. I didn’t know what would happen if I took any particular pill, and I feared that if I tried to actively treat my illness I might be pressed to take a whole bunch of pills.  The number of unpleasant side effects I might experience in taking a whole bunch of pills seemed like an impossible hurdle to surmount.

Even though the amount of information available on the internet about ME/CFS was much less than is currently out there, I was overwhelmed by the lack of consensus there was on how to treat the disease. I came to the conclusion that if there were as many factions as there were, and nobody was out there getting cured, that there was no sense in trying any of the regimens.

In that no-treatment interval, there was an episode in the middle of one night where I was having cramps and took a couple of Advil, something I’d done plenty of times – well, plenty of times before I got sick. But this time, 20 minutes after I swallowed the pills, my heart rate zoomed up to 180 or so and stayed there – for two hours. Chimp and I sat in the car, in the garage, with the cabin light on, through the wee hours, because I was toying with the idea of going to the hospital, but I knew from experience, by then, approximately how helpful they were going to be at the ER. We sat there until my heart calmed down and we went back to bed. Scratch Advil off the list and add another log of unpredictability to the pill-fear fire.

I look back at those three and a half years that I took nothing because I didn’t think there was anything to be done, pushed myself to keep working, and regret so much all that lost time. When it came to the moment that I had no choice about whether or not to take drugs  – the moment in fall of 2007 when one night, with no explanation, I simply stopped sleeping – that opened a channel for me to learn to take medication again.

I’m better about it in some ways now. I take a lot of pills. And I suppose that if anyone had tried as many pharmaceuticals and supplements as I have by now, they would have had some unexpected reactions. Plus, it’s not that everything has major side effects for me – I have a regimen of half a dozen soporifics I’ve arrived at that I deal with pretty well. Except for the fact that by 4 p.m., I don’t remember anything that happened before about 10 a.m.

But it has never come to be fun starting them, and NBPS still rears its head. Pretty regularly, when I am to try some new thing, I order it and sits on my dayroom table for a while, sometimes a very long while. Maybe I open the bottle, pull that long wad of stuffing out if it’s a supplement (and turn to Chimp and make my perennial joke, “They expect me to swallow this?”), look at what’s inside, and put the cap back on for another day.

When I do actually get around to starting something new, I only start one thing at a time, because if something unpleasant happens, I don’t want to have to wonder what is causing it. My routine is always the same: I take a tablet and take a chip off one end of it, or open the capsule and pour out a tiny portion of the powder, and take that minuscule amount, because I don’t want to take the full dose and find out I’m loaded with something that my system definitely dislikes. If the tiny amount goes okay, the next day I take a little more, and increase it bit by bit, until I reach a problem or get up to the whole dosage.

It’s not uncommon that even with all that, I’ll still have a panic attack somewhere along the way, and the fact that I sometimes have panic attacks with new substances sort of means that in the future I will still sometimes have panic attacks with new substances. They’re unfortunately self-perpetuating that way.

Like the Advil, sometimes unexpected things happen even with stuff I’ve taken for years – the old bottle was old, and the new bottle is stronger, or it’s a different manufacturer, or something unknowable has changed in my system since the last time I took it, and now it and I don’t get along anymore. And that’s the worst – the times I think “Oh, I’ve done this before, nothing to worry about, same stuff, no big deal” and – nope. It happened with both an antibiotic and a topical recently, and both times my body threw my most hated reaction: dissociation.

I suppose there are some people out there who would like to have a surprise mild out-of-body experience every once in a while, but I am not one of them. There is a very good reason that I have never taken any psychedelic drugs. I’m a bit of a control freak when it comes to staying in touch with reality, and whatever that trippy, dissociative area is that my brain opens up in response to some substances that makes me feel like I’m at a distance from the world, it almost inevitably leads to a panic attack.

In the end, despite all the weird experiences I’ve had in this vein, I don’t really know anything about what causes it or what it indicates. I don’t know if the truth is that I’m really sensitive to medication, really good at noticing the tiny changes it brings about, just a pansy, or some combination of those. Was my perpetual coalmine-canaryness a sign that my system had the potential to be deranged into just the sort of illness I developed, or is it just a coincidence? Whatever it is, I have to say it’s not optimal for someone whose career for the foreseeable future consists mostly of washing down pills. And I wish there was a way to keep my body from throwing the switch that lights up the big flashing SOMETHING IS DIFFERENT sign quite so often.

Posted in Life Before, ME/CFS, Uncategorized | Tagged , , , , , , , , , | 23 Comments

And So This is Christmas

Warning: This video contains a lot of disturbing imagery. 

I know I’m late with this post. Would you believe that trying to have Christmas with the tiny store of energy ME/CFS allows me caused me to run late on writing this? I knew you would.

I have a confession to make: I can’t stand Christmas music, and to tell the truth, I’m not so hot on Christmas in general either anymore.

Now that we’ve gotten all of you gasping at my Scrooge revelation (watch through 4:10, because the acid kicks in at 4:11) out of the way, let me explain.

Growing up, I did a great deal of choral singing. First at church, then in my elementary school choir, and I carried that pretty much all the way through high school. So what bearing does this have on Christmas? In a school choir, you start learning the music for the holiday show almost as soon as school starts in the fall, and you work on it five days a week for four months. And I loved my choral directors – they gave me an enormous gift in teaching me to sing – but they had a tendency to pick some awfully cheesy selections to inject some variety into the holiday program. For instance, I sang this in junior high, and I’m still waiting for the Christmas season when it doesn’t return unbidden and beat me over the head for several days:

Aaaaaaaargh. So if you’re in a choir, by the time Christmas arrives, you’re sick to death of it already, and after doing this every year for eight years, Christmas music was basically totally ruined for me. So that’s Christmas strike one.

Then, in my early 20s, I worked at Whole Foods for five years, most of that as a cheesemonger. Being a cheesemonger is miserable at Christmas, because your department is one of the ones that has the biggest increase in business, and it’s not as if you get five times the people looking for easy, everyday items like fresh mozzarella. It feels like nearly everyone who walks up to the counter says, “I need three cheeses for a party,” and has no idea what they want besides that. If I were smart, I would have given everyone the same three cheeses, but not being so, I didn’t really think of that until years later. There was always a point in the holiday season that I started fantasizing about standing on top of the cheese counter and just winging 1 kilo Bries into people’s carts, Frisbee style.

But the worst part of working retail at Christmastime is that the holiday music starts the day after Thanksgiving and runs until New Year’s Day. That means eight to ten hours a day of holiday cheer and enforced merriment, which, as the weeks roll on, starts to engender very un-holidaylike thoughts of doing violence to Santa, the reindeer, the poor innocent elves, or at the very least gunning down the executives of the Muzak corporation. As comparison, my favorite band for most of my Whole Foods years was emmet swimming, whose holiday song, in their usual depressive mode, is about being forced off the road due to weather and missing Christmas entirely:

So between choir and retail, I felt like I had had a lifetime’s worth of exposure to Christmas music by the time I was 25.

And then I got sick. When I got sick, we were living in California. My mom’s family is from Indiana, and my extended family all meet up there, in the ancestral homeland, for Christmas. Getting back to Indiana was manageable when we were living in Virginia (where I grew up), and even more manageable when we moved to Michigan (for Chimp’s work), but once we got to California and I got sick, I stopped being able to manage the trip back. If I’d just been sick, I’d probably have been able to swing it, but I was trying to hold onto my job, and that meant that any moment I wasn’t working – including over Christmas – I needed to be resting so I could continue working.

My huge, wonderful extended family on Christmas in 2001.

My huge, wonderful extended family on Christmas in 2001. Chimp and I are at back right. Since then, we’ve added two spouses and six children.

Chimp and I were stuck all alone in California together, where we were miserably friendless despite a lot of trying. Every year, we’d call Indiana on Christmas and get passed among a dozen-plus family members, and every year, after hanging up the phone, I would dissolve into tears.

Removing being with my extended family from my experience of Christmas turned my perception of the holiday from a joyful time of year full of togetherness and festivity into a month-long society-wide mass hysteria in which we all spend tons of money, eat too much, and wake up January 1 saying, “What have I done?” Don’t get me wrong – I take inordinate joy in delighting people with well-chosen gifts – but the togetherness always meant more than the presents to me, and not being able to see my family, there are times when I entertain the idea of giving up both giving and receiving gifts in order to knock down the stress and expense of December.

Then, the final blow: It was five years ago Christmas – 2007 – that I had the crash that ended the career I loved and left me bedridden. I’d always mostly recovered from crashes in a couple weeks before, or had at least gotten reasonably close to where I had been on the slow downhill slide the illness had me on, but this one was far worse than any of my previous crashes. So Christmas inevitably reminds me of that.

And because that crash figures so large in my recent experience of the holiday, Christmas has become even more a time I take stock of where I am as compared to 2007. (Thankfully, improved, though not substantially recovered.)  Thus the John Lennon tune at the top of this post. That song is one of the few pieces of holiday music that I still enjoy. I enjoy it because there are absolutely no holiday cliches contained within it. No snow, no reindeer, no Santa, no nothing. You get a few bells for your money. Truthfully, it’s not a Christmas song – it’s an anti-war song using Christmas cover. And that’s probably a good deal of why I enjoy it.

I say I enjoy it – it does always make me cry. It makes me cry right off because of “…and what have you done?” That lyric is a bit of a splash of cold water in the middle of living, isn’t it? A reminder that no matter what we do, time is going by, and it yanks you right out of the frenzy of consumerism that Christmas can be and plunges you into the question of whether what you’ve accomplished since the last time you heard this song is of value to humanity and the world, and whether it’s of a piece with the spirit of the holiday and the goal of achieving peace in our time. What’s more peace on earth, goodwill toward men than that?

Put this song up against Paul McCartney’s execrably shallow “Wonderful Christmastime.” It’s not even a contest.

And I suppose that’s why the tears come. Not because I’m sick – this song made me cry long before I ever was! – but because no matter what the past year has contained, I’m reminded of all of the ways that I’ve fallen short of my idealism and of the things I wanted to achieve but didn’t. It prompts me to think about how I can redouble those efforts, whatever they might be, with the life I have.

This is the point in the blog post that you are not at all surprised when I tell you that the only Christmas movie or special I ever care about seeing again is It’s a Wonderful Life. Which also makes me bawl like a baby, because it hits all the same themes of reflecting on all the ways one person can make a difference in the world.

There are fewer of those ways than there used to be for me, and the ends I put them to are a bit different than they once were. But I will still take weeping over what we failed to do, what we can do, what we need to do, over any amount of tinsel and claymation.

Posted in Life Before, ME/CFS | Tagged , , , , | 10 Comments

A Thousand Things

Starting the assembly of breakfast, my quotidian victory.

If you’re a healthy person, how many things do you think you do per day?

Your to-do list at work might have a half-dozen things on it, but I’m talking about more than that. Maybe you run a few errands after work and do some housework when you get home, and you think that brings it up to an even dozen?

What if I told you you do a thousand things per day?

I say that to demonstrate my perspective as someone with ME/CFS. The difference between what you can manage and what I can manage is enormous, and it’s likely that you and I see our possible energy expenditures in an entirely different way. Those thousand things include actions you never think of, things you’re hardly aware of – things that you would never think of as taking energy, because to you they take such a negligible amount. But they would would be enormous against my tiny supply.

And in comparison, how many things would you guess I do? Well, I’d say I’m up to a hundred now, maybe more depending on the day, but at my sickest, I’ve gotten down to as few as a dozen.

A dozen things a day is totally bedridden, unable to get out of bed and walk across the room. To get a bath, I had to be wheeled the twelve or fifteen feet from my bed to the bathtub. My computer sat on a table next to the bed, but my ability to use it was limited to reading about one email a day. No typing. No facebook. Most of my energy went into eating my meals, which were brought to me in bed by my mom on a tray, and to picking up my water glass and sipping from a straw when I was thirsty. Turning over from one side to the other counted as one of my dozen actions. I could only manage to change my clothes once every four days. I couldn’t stretch my muscles – the sort of thing you usually do a few times a day – because it ate too much energy, preventing me from having enough for other things I needed to do. My sense of humor disappeared, at least to my caretakers – I could barely speak, and I couldn’t afford to waste the few precious words I could manage per day on making jokes. I also had to consistently suppress the urge to laugh, because it too took too much out of me.

I spent more than a year like this, from Christmas of 2007 to the spring of 2009, and there are many, many ME/CFS patients in that state. These days, I do more things before breakfast than I was able to do in a week back then, and basically each of them are things I was completely unable to do then at all.

By illustration, a typical morning of late: On waking, I change into the clothes I set next to my pillow the night before, pull up my covers, making my bed lying in it, fold up my extra blanket, go across the room to pick up the decorative pillows and back to put them on the bed. I walk to the bathroom, wash my face, get out a towel and face cream, dry off, put the cream on, and put the towel and cream away. I fold my bath towels, which were drying overnight. From there, I go to the kitchen, get out a bowl, a spoon, measuring spoons, cutting board, the canister of muesli, my pills, a pear, a hot pad, the carton of soymilk, and a pre-measured syringe of B12. I put muesli and water in the bowl, sit at the table to cut up the pear, then place the bowl in the microwave and start it. I put the pear core the in trash, the utensils in the dishwasher, and sit down to wait for my breakfast to cook. I take the muesli out of the microwave, pour soymilk into it, put the soymilk away, and carry the muesli and my pills to my dayroom.

That, in case you weren’t counting, was 34 things. And that’s about a third of my energy expenditure for the day right there.

I can do a lot more now than I could a few years ago, but I still have to watch myself very carefully. But this, honestly, is a large part of why I manage to be happy, as sick as I am. When I was limited to a dozen things a day, my dream was simply to be able to read on the computer all day in order to fill my time, so I didn’t have to lie in bed doing nothing but staring at the same walls every day. Anything that I can do beyond that reading feels like gravy. Being able to walk to the bathroom, to heat up a meal, to have a little conversation, just to be able to get up and leave the room if I want to – all of this is a dream that I never thought would come true.

But while I’m doing better now, figuring what I can manage, and staying what is called “inside the envelope” is still a constant struggle. I mentioned above that there are things that a healthy person doesn’t even think of as taking energy that in my case would count toward my number of things. In terms of staying inside the envelope, it’s not just obvious physical activity I have to beware of.

Avoiding these other, less-obvious energy-drainers is key, and we’ve adapted my environment so as much as possible, I’m not burning what I don’t have to spare. But those adaptations are largely not available and even more, not understood in the outside world – even in, say, doctors’ offices – and that, on top of my energy level, keeps me inside the four walls of my house.

Some of the things that I have to beware of are:

“Minor” physical exertion – Staying upright, for most people, is just a normal part of their day. My heart won’t pump enough blood to allow me to, so I lie down about 98% of the time. If you have a conversation with me, you might notice a preternatural stillness, because to fidget, or to talk with my hands, takes energy. I read almost entirely online, because to hold a book and do the repetitive motion of turning pages is too much effort. For the same reason, I have to carefully watch how long I pet my cats. When I go to bed at night lying on my side, I prop myself with pillows fore and aft, so my body doesn’t have to use muscle power – and energy – to keep me in position.

Sound – There are several components to this. Normal sounds now seem about three times as loud as they actually are, so when someone new steps into our house and starts out at a normal conversational tone, before Chimp gets a chance to tell them to speak quietly, it sounds like they’re basically yelling at the top of their lungs. My brain does a poor job of blocking out extraneous noise, so a normal conversation in the next room, or the sound of kids playing outside, make my brain continually jump to attention and can wear me out very fast.

I also have an enormous music collection gathering dust, because the stimulation of music wears me out even faster than does conversation. I can listen to a song or two a day, on good days. For the same reason, audiobooks and podcasts, which are a life-saver for some ME/CFS patients, are so challenging as to be impossible for me, because with no visual cues, they require an enormous amount of processing power to understand – cognitive abilities that I just don’t have anymore. My tolerance for sound also depends somewhat on how I’m doing – if I’m having a good day, I can deal with more, and if I’m having a bad day much less. Some days the dishwasher going behind the kitchen door is no problem, and some days I have to put my earplugs in, or ask Chimp to run it after I go to bed.

Light – My photosensitivity has a couple dimensions too. Too much light flooding into my environment, like having the blinds of my dayroom more than halfway up, causes my eyes to sting and is tiring. Likewise, I have a terrible time with overhead lights – they feel very physically oppressive and sap my strength. I generally have to keep light sources behind me for the same reason, and fluorescents that obviously flicker are very bad news – I don’t get a headache; I just get tired.

Smells – I debate whether light or smells are the everyday thing that’s most problematic after sound. My sensitivity to both is amplified, so smells are much stronger to me than they seem to be to others. Light, generally, is at least adjustable – you can turn it off. There’s no turning smells off, so the only way for me to deal with them is to avoid them or get away from them. When I encounter any sort of scented product that I’m unaccustomed to, like body care products or household cleaners, it feels like the smell is repeatedly interrupting in my brain like noise does, and I can’t think straight as long as it’s present.

Physical pressure – I have closets full of treasured clothes, vintage and otherwise, that I never get to wear because I can no longer deal with the pressure of normal garments – they too are draining, because my body constantly uses energy sensing them, and because my body has to struggle against them to breathe. This, for those of you who’ve seen photos of me in the last five years, is why I’m always in pajama bottoms and a loose-fitting men’s v-neck t-shirt. The pajamas have to be knit, and soft, though, because woven is too binding, scratchy fabric causes the same sensing, and the elastic can’t be too close-fitting either. Thank goodness I don’t need a bra, because I can’t manage to wear one. I no longer wear contacts – only glasses – as having the lenses sitting on my eyes is a pressure problem. Wearing jewelry also falls under this heading – every month or two I get my wedding rings out, put them on and look at them a bit sadly.

Visual motion – The first time I noticed this really being an issue was relatively early on, when we were at a favorite restaurant in California that had high ceilings, with lights above the ceiling fans instead of below. The fans cast crazy whirling shadows all over the place, and I felt increasingly sick and then more and more worn out the longer I sat under them. Ceiling fans alone are now a problem for me, even on video. And video in general is a huge energy-eater, too. I can deal better with some things than others – something like a placid, quiet BBC program is more tolerable than anything with a lot of jump cuts, and I really have to beware anything flashy or blinky. I’ve never actually had a seizure, but things that flash make my brain feel very bad, very fast, and can be one of those hit-the-power-button-instead-of-trying-to-close-the-browser triggers.

Emotional stress – This is tough to even write about, because just thinking about the topics  that cause me emotional stress causes emotional stress! The main trouble is that, seemingly because I don’t have enough energy to evaluate and handle stressful situations normally, my system tends to react to it the only way it thinks it has left – by juicing me into fight-or-flight mode with a surge of adrenaline. (Good luck on both the “fight” and “flight” aspects, body.) I know it thinks it’s helping me to survive, but the minuscule items it reacts to in this way are pretty ridiculous. Reading an article containing a political opinion contrary to mine? Adrenaline! New comment on something I wrote, and who knows, we haven’t read all of it yet and it might turn out to be negative? Adrenaline! Remembering a past stressful event? Adrenaline! It’s a non-optimal response, to say the least – and those surges of adrenaline are difficult for my body to clear. I can easily end up hot and weak with my arms shaking, ruined for a couple hours, or more. For this reason, I try to avoid stress and conflict as much as I can, for example by hiding friends with contrary political opinions on facebook.

These difficulties didn’t become part of my life all at once. I got sick, and then a little more sick, and then a little less, and then more and more. Because they’re all normal for me at this point – just how my life is – they’re sort of invisible to me. I wanted to write them out like this because I suspect that many of my well readers, those who don’t know me personally or haven’t spent time with someone like me, might not have a good sense of just what that middle F in our much-hated three-letter acronym really means.

All that above? That’s what “fatigue” consists of. Those are the constraints I live with that I have to both remember to stay within for my physical health and try to forget about for my mental health. It really makes the f-word sound like an insult when you see it all laid out like that, doesn’t it? It’s not fatigue. I and people like me are dealing with constant, debilitating exhaustion that affects every bodily sense, every decision, every moment of our day.

Fellow ME/CFS patients, I really want to hear from you here. Would you please take a few of your number of things, if you have them to spare, and tell me about some of your personal constraints?

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We’ve been together fifteen years total, and this was eleven years ago this month.

One of the more difficult things to deal with about being this ill is the feeling of uselessness imposed by my physical limits. Even as long as I’ve been ill, I’ve never quite gotten over the guilt of not being able to do what feels like “my share” anymore.

I grew up with a pretty strongly feminist streak, and in envisioning my life as an adult, I anticipated having an awesome career, maybe getting married, and that if I did, it would be to someone as feminist as I was; someone who would want us both to contribute equally to our household. Dividing our obligations that way seemed like the only fair way to operate, and fairness – as a reflection of equality – was enormously important to me.

When Chimp and I said “I do” in 2001, we wrote not only our own vows, but our own fairly non-traditional ceremony. We didn’t include the words “in sickness and in health.” Chimp had been dealing with ankylosing spondylitis since his teens; I had watched him get out of bed like an old man for years already. I thought I knew who was going to be the sickness and who the health.

My losing the ability to contribute financially and physically happened at the same time. At the end of 2007, after several months of insomnia, I had a crash at Christmastime from which I’ve never recovered. I was struggling just to get back and forth from bed to the couch, and I said to Chimp, “I can’t go back to work in January. I don’t want to stop, but I can’t physically do it anymore. It’s over. It has to be.” I remember the panic written on his face, the hopeful assurances that maybe if I took a week or two off, that I’d bounce back, that it’d happened that way before. But that crash turned out to be the one we’d worried about coming.

Since then, having to deal with needing much more care than a normal adult human, in combination with that old fairness streak, means I constantly have to resist feeling like a drag, a burden, and an obligation.

Feeling that way is pretty much all me, though. Since I became bedridden in 2007, both my mother and Chimp have stepped up in a way that I know has been an incredible challenge for them. I don’t expect that either of them thought that in my thirties they would be helping me get baths and bringing me my meals on a tray. But if it’s a challenge for them, it’s not something they’ve ever made me feel bad about.

The degree to which they’ve stepped up is somehow exactly what I would have expected of them. Not “expected of them” in the sense that I feel I was owed it by any means, but in that it’s a perfect reflection of their compassion and loving natures. There are so many things that I’ve had to rely on them for in the last few years, and it’s been both a humbling experience and an ongoing lesson in gratitude.

Because of how much I have to have done for me and that fairness streak, I try never to take any of it for granted. From sunup to sundown, I’m constantly thanking Chimp for things. For going for groceries and prescriptions, for cooking, bringing me lunch, each of the dozen steps in helping me get a bath, filling up my water pitcher again and again, fetching things from hither and putting them thither and vice versa. For bringing me dinner, cleaning up the kitchen, doing laundry, changing sheets, tending the garden, fetching my pill cups, filling up my pill boxes at the start of the week. In thanking him, I make a point to stop what I’m doing, smile and look him in the eye each time. It seems totally insufficient in return for all he does, but it doesn’t cost me anything, and it feels like the least I can do for all he does for me.

And one of Chimp’s best qualities is that when I say I feel guilty about all of this, he never makes me feel like I should; he always says he’s not keeping score, that he’s never kept score in our relationship, that that’s not what our relationship is about to him. I deeply appreciate it, and I don’t know if I could have managed to do the same if the situation were reversed. Would that sense of fairness I was carrying around have turned into a streak of resentment, if the tables were turned?

In return for all he does, I do try to do absolutely as much as I can to help within my abilities. I don’t have great physical stamina, but one thing I do have in abundance is free time. So I plan our menu for the week, keep my bathroom and bedroom neat, order things we need online, do the garden planning and some of the easy planting and harvesting when I can, take charge of sending greeting cards and choosing birthday gifts, and have spent the last three years gradually making the house our own with a small budget spent on ebay and Craigslist.

When I write that out it doesn’t seem like much.

But Chimp knows all this, knows that I do all that I can, and that I constantly wish I could do more. The other night, as we were having our usual bedtime hangout and cat playtime, I said to him, “I wish I could work.” He didn’t reply. What is there to say to that, really? He knows what I mean by this shorthand. He knows all about my sense of fairness, and he knows what it continues to mean to me. That I wish I wasn’t so dependent. That I wish I could make my own money. That I wish I could go out into the world. And he knows I couldn’t so much as get up in the morning, take a shower and dress myself for work, and I’ll probably never be able to again.

“I know,” I said, after a moment of silence between us. “I should just be grateful I’m still here. I am grateful I’m still here.”

“I’m grateful you are too. And if someone had told me everything we’d go through, I would do it all again to be with you.”

And all these years after I married him, that’s what I’m most grateful for.

Posted in Chimp, Life Before, ME/CFS | Tagged , , , , , , , , , | 23 Comments

A Love Note to Congressman Daryl Metcalfe

“I don’t believe any legitimate voter that actually wants to exercise that right and takes on the according responsibility that goes with that right to secure their photo ID will be disenfranchised…[W]e have a lot of people out there that are too lazy to get up and get out there and get the ID they need. If individuals are too lazy, the state can’t fix that.” –Rep. Daryl Metcalfe, R-PA

Dear Mr. Metcalfe,

I am a Pennsylvania voter who has no photo ID. The reason I have no ID is complicated.

I have had an acquired neuro-immune illness, myalgic encephalomyelitis, since 2004. I am 37 years old; this illness cost me a career I loved five years ago. After I got sick, I kept working as long as I could, resting on the weekends as much as I could to hold onto my job. Eventually that wasn’t enough, and I had to stop working at my office and do so from home. Eventually that too wasn’t enough, and I had to work lying down, because my heart couldn’t pump enough blood to allow me to stay sitting up. And eventually even that wasn’t enough; I have been almost completely bedridden since Christmas 2007.

I moved to Pennsylvania in 2009, and have not been able to get a new ID since then.

I can’t get a new license because it would require 1. a “Medical Qualification Certificate” (as much as my doctor likes me – his office is the only place I leave the house to go, which he appreciates – if I can’t sit up for ten minutes, I’m going to flunk this one) and 2. a road test (I’m sure you can see why this isn’t going to fly either).

However, at this point it’s possible I could struggle through the process of getting a free state-issued ID with significant physical help from my husband, who works full-time and is my devoted full-time caretaker too, heavens love him. It would undoubtedly set me back pretty badly for a few weeks afterward to try to do that, but I’m the sort of person who is lucky to at least have all the necessary documents to get a photo ID on hand. But I’m not going to. You know why?

Because after having voted absentee last time, I’m in the process of getting set up as a permanent absentee voter. Doesn’t that make more sense for someone like me? Anyway, I say “in the process” because we sent the forms in a few months ago, and they lost the paperwork the first time. We called them when we didn’t hear anything for a while; otherwise I never would have gotten that ballot and I would have been disenfranchised. My husband took a second set of the forms to my doctor’s office, and then to the Board of Elections, and they say I’m squared away now. We’ll see if my ballot actually arrives.

Guess why we’re doing this? Guess what I don’t need to have to be a permanent absentee voter?

That’s right: a photo ID.

I expect you’ll want to get to fixing that oversight as soon as you can, in order to make disabled people’s lives more difficult than they already are.

But I guess you’re right – I guess I don’t have an ID because I’m just too lazy to go get one. All that work I did to hold onto my job after I fell ill – including working lying down for months on end – doesn’t count for anything, right? Won’t my doctor be pleased to know I don’t have a terrible, life-altering chronic illness for which there is no cure and no FDA-approved treatments, and I’m just lazy!

I’m feeling healthier already!

Yours Not Very Sincerely,
Jocelyn W.

(Comments are disabled because the most stressful thing in the world for me is a political argument. Sorry.)

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My Secret Identity

An old friend who is a serious comic book collector flattered me recently by likening me to the character Oracle. For those of you, like me, who aren’t intimately familiar with the DC universe, Oracle is the nom de guerre of Barbara Gordon, librarian, Commissioner Gordon’s daughter, and the former Batgirl.

I will pardon if you haven’t quite seen the likeness yet. And I promise I have a reason besides my own vanity for relating this.

As Commissioner Gordon’s daughter, she is shot through the spinal cord by the Joker. Paralyzed from the waist down, she is relegated to a wheelchair, and retreats from her crime-fighting past. Eventually, though, in response to her straitened physical circumstances, she emerges from the shell the wounding has put her in and turns her prodigious intellect, remarkable memory, research abilities, and knowledge of computers to a new role as an information broker, backing Batman, Nightwing (the former Robin), and the Birds of Prey and helping them succeed in fighting crime from behind the scenes.

While I feel like I’ve lost a fair number of IQ points and I’m not the hacker that Oracle is portrayed as, I do have pretty good Google-fu, a detail orientation, a gift for finding connections, a severely overdeveloped sense of justice, and a whole heck of a lot of time on my hands, being mostly bedridden. And as my energy level has improved a little in the last year, I’ve had the opportunity to help the above-mentioned friend with some computer- and web-based tasks, and that’s led me to take on some other low-stress outside projects.

Not for Batman. At least not yet. Sorry.

Next year will be my high school graduating class’s mumbly-mumpth reunion. Earlier in the summer, our class president re-activated a facebook group for us, and I asked him if I could help us start to prepare by looking people up on facebook. Barring a miracle, I won’t be able to go, of course, but I thought it would be nice to feel as if I contributed to helping others to enjoy the event.

Theatre & visual art folk at the last reunion. That’s me on the right. It’s sort of weird to me at this point to see pictures of myself well and standing up.

I’m sorry I won’t get a chance to go to the party, because I had a great time at the last one in 2003, dancing with the theatre/visual art/mod crowd to all our shared subcultures’ alterna-hits, and at one point, one of the former art types, wearing a hot pink paisley shift and big stompy boots up to her knees, yelled over a Violent Femmes song into my ear, “ALL THE PEOPLE WHO MADE FUN OF ME FOR WEARING BLACK ALL THE TIME ARE WEARING BLACK TONIGHT!”

You can’t buy irony like that.

Anyway, I’d done something like this previously, looking 120 people up for my high school theatre’s facebook page, and it wasn’t difficult – a bit tedious, but it is fun to see what people have done with their lives. Okay, yes, it’s also fun because I’m a total creeper.

So that’s what I’ve been spending a chunk of my time doing of late, kicking up the old tendinitis in my hands in the process, which has kept me away from writing here. One of the things that’s hardest about being this sick is how utterly useless it makes you feel, so I love that I’m actually accomplishing something useful – something more than posting weird links and cat videos to my old friends on facebook.

I knew off the top of my head how big my graduating class was – 580+ people (I went to what was at the time the second-largest secondary school in Virginia). When I started typing the names into the spreadsheet from the yearbook, I figured it was going to be a big task, but I guess I didn’t figure on the difference in importance I’d internalize between looking up people to invite to a facebook page that there’s no real deadline on and the higher-stakes game of  tracking people down for A Big Reunion. And this task is a little tougher, because I have fewer mutual friends to help things along than I did with the theatre crowd.

Looking at profile after profile has been interesting – and has made me feel unexpectedly wistful. I’m not the kind of person for whom high school was the high point of my life, but because I was well then and I’m sick now, I think I probably look back on it with more nostalgia than I used to. It’s easier now to look past how much I resented the regimentation we were forced into and the depression I suffered at the time and just remember all the things my former vitality made possible.

And there is something about the fact that these are the people with whom our topics of conversation and shared experiences were the milestones of adolescence, what were to that point big events in our lives: our crazy driver’s ed road instructors, how long until the date we could get our licenses, how many times to take the SATs, if and where we’d managed to land summer jobs, surviving AP classes, pulling our hair out over college applications, anticipating prom, and the great launching and subsequent diaspora that was graduation.

Now, trying to pick out my classmates from the sometimes-sea of similar names on facebook, I find that we’re still living our lives in a similar kind of sync; the signs of being same-age peers from a shared hometown are good tells. I often bet right by choosing the profile that pictures one or sometimes two beaming children’s faces below a certain age, notes a government or defense career path, or shows allegiance to a Virginia university. I’ve been struck, too, by the progress many others have made in their careers. I guess it shouldn’t be surprising, as we’re all edging into our late 30s, but people are well into leadership in a lot of cases. And:

  • The guy voted “Most Likely to Succeed” indeed has his own law practice.
  • “Most Eccentric” no longer has green hair and also works in law.
  • “Prettiest Eyes” is a newscaster, and in Googling her I discovered that there are whole websites devoted to saying offensive and degrading things about female newscasters, worse than you’d ever hear whispered behind the cover of a locker door.

Never let it be said that creeping never taught anyone anything.

Yes, I know I’m getting a biased sample – people are probably not going to crow about their non-accomplishments, unhappy relationships, and mid-life crises on facebook, but it’s a cross-section of my peers, and for me personally, one of the things that that is another reminder of a couple kinds of life progress that the disease slowed and then totally stymied. September always makes me feel a little wistful anyhow, because it’s been a transition point in my life so many times. This is just amplifying it.

But let’s not dwell on all that too long, right? I have crime to fight a spreadsheet to finish.

Posted in Life Before, ME/CFS | Tagged , , , , , , | 113 Comments

One Foot in Front of The Other

I was once a runner.

I wasn’t always. I took it up after I left NYU in 1995. I’d been teaching myself to cook at college, and turning out to be unfortunately, deliciously good at it, so the second half of my sophomore year, I set myself once again on on the downward spin of my customary yo-yo diet.

Up to that point, I had never really been athletic at all. I hated team sports growing up – disliked competition because I’d always been a bit too emotionally sensitive to deal with losing. Because of that, I tended to work out alone, choosing bike rides, power walking, and aerobics tapes, all of which I know I thought burned more calories than they actually did. But at age 20, I decided I wanted to get into better shape than I’d ever been in, and to that end, running – something I’d never been at all good at – felt suitably hardcore. Growing up, I’d always been at least the next-to-last to finish the 600-yard-run, huffing and puffing and trailing along way in the back with any heavyset classmates. I’d only run a mile without stopping one time, despite the much dreaded Wednesday Mile in my high school P.E. class, so I set that as my first goal.

Back at home in the leafy planned community I grew up in in Northern Virginia, there were miles of trails stretching out through the woods in every direction. I’d always loved being alone with my thoughts in the woods, and more of that as part of my new commitment to fitness, in my mind, sure beat the idea of endless circles on a shadeless, baking track on a humid Mid-Atlantic summer day. I started on the trails I’d always used, and as I upped my distance, branched into other neighborhoods, and then further afield.

I soon took to running at Burke Lake, the nearest large park, which has an almost-five-mile circuit through the woods along the lake’s shoreline. I’d run as much as I could of the first mile, walk a bit, run a bit more, walk a bit more. Each day I’d mark down on my calendar how fast I’d finished the trail, and gradually the number started creeping downward.

The first time I ran the whole 4.83 miles without stopping, I circled back into the parking lot to find a huge flock of geese milling around. I raised my hands above my head in triumph and jogged through the goosey crowd, feeling as if my personal accomplishment had been granted the reward of a reasonably receptive audience, even if they were a bit more prone to pooping in public than your average race spectators.

Once I’d gotten my endurance to the point that I manage the lake trail without trouble, I discovered that I truly loved to run, and that I could keep putting one foot in front of the other for seven or ten miles if I wanted to. I wasn’t fast, and I didn’t suddenly develop the competitive streak I’d never had, but running became my favorite form of exercise. I loved its repetitive, meditative nature and the time it gave me to turn problems over in my mind.

I came to know the lake trail like the back of my hand. I’d start from the parking lot near the dam, kicking things off with a sharply winding downhill, crossing the dam’s asphalted width in full sun, then diving into the packed dirt and shade of the main trail. I psyched myself up for climbs and sprayed loose gravel on their downhill sides. Month by month, I watched the seasons change in the woods. I looked for new wildflowers along the trail – bluets and violets in the spring, crown vetch in the height of summer – and noted the date of each find in my Audubon guide at home. The time I spotted a cluster of otherworldly Pink Lady’s Slippers in the forest understory, or when I came face to face with a tiny dappled fawn sitting alone in a trailside clearing, were red-letter days that fed my soul.

I definitely achieved my goal of getting in the best shape I’d ever been in. I ran a pretty solid 25 to 30 miles a week for a while. Sometimes back then, instead of taking the car, I’d ride my bike the 4.5 miles to the lake, run the trail, and ride home. Having so much more endurance made me feel at times like a totally different person than I’d been before I started running, and boosted both my confidence and my happiness.

I stuck with the running pretty well for a year or so, but taking a management job at Whole Foods started eating into my running time the next year, and at the same time I was running out of patience with the carrots-and-nothing diet required to keep my weight as low as I’d gotten it. The year after that, Chimp and I moved in together in a closer-in suburb, and I started working mostly mornings. All of that conspired to make it tougher to get to the lake, and I said a mostly-goodbye to it and a more permanent one when we moved to Michigan in 2000.

Kalamazoo, I found to my dismay, didn’t have a park system like Northern Virginia’s. Not many places do. Besides that, it was tough to get any miles at all in outdoors half the year without crampons and a snowsuit, so two years later, I bought a treadmill to use during the frigid winters. It was just as helpful when we moved to Fresno in 2003, at the other climactic extreme.

Lacking Burke Lake but having a treadmill, my usual habit, six days a week, was to get up in the pre-dawn darkness, shut the door to the room where the machine was, strap on my sneakers, point a fan at my back, turn on the music, and pound out a quick three miles before getting ready for the day.

And then I got sick.

Some people I know with ME/CFS talk about how they had to scale back their workouts, or how their recovery time got longer, or how they have had to drop aerobic exercise but can still lift weights a little. Not me. I was instantly unable to exercise at all. My stamina dropped like a stone and never recovered. A few months into my illness, I turned on the treadmill and climbed on, determined to do something. I walked my last mile on it at the absolutely glacial pace of 25 minutes.

A couple months later, I remember being at a trade show for work, and feeling a sort of dazed amazement at watching people walk around the huge convention hall without any difficulty. They could just start walking, and walk for as long as it took to get from point A to point B. It’d only been a matter of months since I’d lost that ability, but it already felt like I was observing an alien race.

The sicker I got, the shorter the distance I could walk. It went from blocks to a block to maybe around a store to across the room, and then I couldn’t walk at all. I spent more than a year like that from late 2007 to early 2009, totally bedbound, unable to get up and walk across the room for any reason. Couldn’t have saved myself if the house was on fire. It was the worst sort of misery, being totally helpless, totally bored, a prisoner of my own body. And I know eventually, someday, it’ll probably be back.

But since 2009, my mobility has been improving, and this year it’s better than it’s been since 2007. For a long time my gait was very tottery because of the muscle wasting caused by my years lying in bed – more like swinging from point to point on stilts than actually walking. But I’ve been doing enough of it that it’s starting to look more like walking. I’m able to go farther now, and my balance is improved. I wouldn’t say my calf muscles look normal, but they look perceptibly better.

This spring I started tending my deck railing garden outside my dayroom myself, and then when the snap peas that Chimp planted came up, I was able to step off the deck and harvest them. Within the last week, on several days I’ve struck out for the squash plants along the fence to bring in their yield, and have been sort of half-surprised to find myself out that far, and then half-surprised again to successfully navigate the incline to get back to the house.

The other night, I was standing at the kitchen sink, washing a bowl of cherries while gazing idly out the window at the gathering dusk. A fit young woman came powering up the steep incline of the street our house sits on, attacking the hill with determination. I watched her shirt swing around her as she pumped her arms to pull herself up the grade, and felt a pang of sadness. I used to be that woman, I thought.

I looked at the cherries in my hands and remembered the years I couldn’t have helped myself to them. I smiled to myself, turned around, and relished the 20-foot walk back to my dayroom.

Posted in Life Before, ME/CFS | Tagged , , , , , , , , | 30 Comments

Losing My Edge

(Lyrics here.)

One day about three years into my illness, when I was still well enough to be working but sick enough to be doing so from home, I met my departing boss – let’s call him Brad – for a farewell lunch.

Chimp snapped this the day I went for my first interview at the marketing order. The Nanette Lepore jacket was a splurge and my first of a number of her designs. Ah, fashion. I miss you.

Not long after we moved to California in 2003, Brad snapped me up for a marketing analysis position at the California stone fruit marketing order, which he’d been hired to reshape. Serendipitiously, my resume – and a letter about me from the pen of the professor who’d been my food marketing advisor at Western Michigan, from where I’d just graduated – crossed his desk just as they’d been about to advertise the job.

Because of my unusual degree, I’d come into the job with some capabilities that the organization hadn’t previously had, and together with Brad and the rest of our marketing team, we’d brought the order a long way in a short time. Now, in the spring of 2007, he was leaving to go work for a fruit shipper.

I wasn’t feeling so hot that day. We’d made plans for the lunch a week or two earlier, and when the day arrived, I was feeling weak and woozy, and found myself dizzy walking into the restaurant in an all-too-familiar way. I knew I was overdoing it, but I felt obligated to go through with our plans, and I was then in the constant habit of overdoing it, honestly.

We sat across the table from each other, talking about our families, what we’d accomplished together, his plans for the company he was joining. And eventually I asked him, “Do you think I have a future in the ag business?”

Brad was kind enough to say, “You’re undoubtedly smart enough to do any job you’d be interested in.” He paused, and added, “As long as you get your illness under control, I think you’ll go far.”

When lunch was over and I left the restaurant, I was still fuming. Get my illness under control? As if it was some assigned project that I needed to stop procrastinating on. As if there was some obvious cure I had declined to take that would heal me. As if I hadn’t been pruning away all other aspects of my life, putting all my dwindling energy into holding onto that job. I knew Brad surely hadn’t meant to offend me, but I couldn’t help but be offended. I was giving my all to that job, and I felt like I was being told that the sacrifices I was making still weren’t enough. On the other hand, deep down, I knew being sick was holding me back.

Six years of college for this moment. (For some reason drama degree credits don’t go very far when you switch to a marketing program.)

I thought back to 2003. I’d graduated from Western Michigan ten years after graduating from high school, having worked for five years of that time after leaving college at the end of my sophomore year. Around the time I graduated, Chimp’s department head said to him, referencing my ambition and my being in business instead of academia, “Are you prepared for her to make more money than you?” Chimp was fine with it, and I was certainly fine with it – he and I had gotten together in 1997, and up to 2003, one or the other of us had always been in school and the other working full-time. But no matter; I’d gotten a lot of knowledge out of my circuitous path, and had thought – why wouldn’t I? – that there was no hurry, as I still had a long working life in front of me.

Nope. One healthy year after I graduated, and then struck down.

Not long after starting my new job, Brad had wanted me to enroll in a year-long produce industry development course, but between my hiring date and when it began, I had already fallen ill. We decided I’d hold off and do it the next year, when I thought I’d be feeling better. But then the next year came, and the next, and I was still in no shape to undertake such a commitment.

By the time I had that lunch with Brad, not only had the disease done a number on my physical functioning, it was doing a real number on my self-confidence, too. It was bizarre to start to lose my confidence, as I had never thought about how dependent it was on my physical health. Dependent on my smarts, my abilities, my drive, sure. My physical health? That I just took for granted that it would continue to be there. But my health and my confidence were tied up together. As I could count on my body for less and less, the constant uncertainty of day-to-day life with ME/CFS made me increasingly protective of myself, and that protectiveness caused me to be more timid and less willing to take risks.

Timorousness had never previously been a problem for me, but now it felt like my initiative and boldness were evaporating. A colleague who’d met me during the first bad wave of ME/CFS I suffered later said, “When I met you, I just thought you were just really shy.” Shy was not something that I had ever remotely been described as. But being sick made me seem so.

And the longer I was sick, the more knock-on effects of this emerged at work. Where I’d previously been take-charge, I started letting others volunteer for projects I would have enjoyed to have as my own. Known for creativity and blue-sky thinking, I now kept quiet in meetings when I would have otherwise have spoken up if my suggestions might add to my workload and thus my energy deficit. I noticed that the everyday stress of the job – things like time pressure and minor conflicts – was growing harder and harder for my body to manage, and was leaving me increasingly wiped out. Worst of all, my cognitive function was deteriorating – tasks that’d once been automatic were now requiring unusual effort, and while others didn’t seem to notice, I nonetheless had wanted to hold on to every one of my IQ points.

I had also started to feel opportunities falling away from me. Brad’s departure meant his job came open, and my boss moved into it. I might have been a natural candidate for her job, had I been doing things like participating in the industry development course, and had I still been working at the office rather than at home. I probably technically had the abilities needed to grow into the job, but it was clear to everyone that I didn’t have the energy level, and I wasn’t asked to apply. Frankly, I was fine with that. Because of the physical difficulties and the personality changes, mostly I just wanted to be left alone to do my analysis and editing – because that I could still manage, and my Excel and Word files didn’t ask me to talk or to travel or even to sit up, which was becoming increasingly difficult.

Looming over me was the possibility that all the life pruning in the world might end up being insufficient, and I might eventually not be able to physically manage my job. After pushing myself to go to too many meetings in the fall of 2007, which caused a crash, and shortly after that the start of my famous insomnia, I had an autumn of sliding downhill, ended up bedridden by Christmas, and that put an end to my working life. I struggled through the production of one last HTML newsletter – what would usually have taken me an afternoon took me five days, struggling through it an hour at a time each day before collapsing – and turned my files over.

It wasn’t a difficult decision at that point; frankly it wasn’t a decision at all. The disease made it for me, and to finally let go of the job was somewhat of a relief. I had been trying so hard to hold on to it for so long, and my insistence on doing so had made me worse and worse. Maybe if I gave it up, I thought, that would be the thing that would help me turn the corner.

But on the other hand, I was 32 years old and I’d been working in the food business for a dozen years. I had started out in retail at Whole Foods because of my idealism, and had gotten from there to where I was by being a bit of a workaholic and a perfectionist. I loved the job I had in California – it was precisely what I’d been hoping to find when I went back to school. I worked as hard at what I did because I truly believed in what I was doing. My focus on doing good through the world of food was my animating purpose in life – I loved it so much that I felt lucky indeed that I could get paid for it – and an enormous part of my identity.

Now it was suddenly all gone. Now the major force in my life was not what I was doing, but what was being done to me by my illness – and I had to figure out who I was all over again.

Posted in Life Before, ME/CFS | Tagged , , , , , , | 32 Comments