A Love Note to Congressman Daryl Metcalfe

Posted on September 29, 2012 by

“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.)

Posted in ME/CFS | Tagged , , , ,

My Secret Identity

Posted on September 2, 2012 by

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

Posted on July 22, 2012 by

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

Posted on June 30, 2012 by


(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

…a little better all the time…

Posted on May 29, 2012 by

I know it’s not much composition-wise, but these are peas I picked myself.

Memorial Day weekend is my sickiversary. Eight years today.

Things are looking up, though – I think I’m doing better now than any point since the end of 2007. Among the indications of improvement:

  • I’ve been playing Words With Friends for a couple months now. This requires more cognitive power than I had for a long time – between word-making and strategy, it would make my brain hurt and make me very tired very quickly. But now it seems to be easier, and it’s really enjoyable to have another way to interact with some of my friends.
  • I’ve felt well enough to have short visits with friends who’ve come through town. Five separate people have stopped by in the last six months for anywhere from an hour to overnight, and while it’s always been a little wearing, I’ve dealt with it without a major downturn.
  • I’m walking better. For a long time, my muscle wasting was such that I got around with a sort of tottery gate – it felt more like using stilts, swinging from one point to another than actually walking. But now my gait is edging more toward normal, and I find I can negotiate stepping up or down without having to grab onto something and control myself using my arms. I would also swear that my calf muscles are looking a bit more developed. Nowhere near normal, mind you, but not quite as skeletal as they are in the last pic in this entry.
  • I seem to have more arm strength. This has been an issue since early on – I had already lost a lot of upper body strength before I was more than moderately ill. It’s easier for me to lift and maneuver objects lately. No Olympic records here, either – I’m talking about things like handling a watering can, or getting a large bowl out of a cupboard – but it’s enough that it makes a real difference in what I can do.
  • I’m able to get up more times during the day, and I’m able to stay up for longer when I do get up. I still have to watch it, but I don’t find the blood settling into my legs in 30 seconds like it used to – instead, I find myself getting a little faint instead of feeling the characteristic pain in my legs that the blood settling there produces.
  • A couple months ago, I started to make my own breakfast. This either involves measuring out muesli, sitting down to cut up dried fruit, and remaining sitting up while the whole thing gets nuked for a few minutes, then getting out the soymilk and pouring some in, or getting out a cutting board and knife, washing and chopping fresh fruit, pouring a bowl of cereal and putting some soymilk into a little pitcher and carrying everything out to my dayroom. Sometimes I realize I’ve forgotten my pills and I have to go back to the other end of the kitchen to fetch them. This might not sound like much to a healthy person, but for the last few years, it might as well have been a marathon.
  • Likewise, I’ve started a fair number of recipes for Chimp. This involves 1. gathering ingredients, 2. gathering implements 3. chopping, mixing, etc. Sometimes I only get to 1. or 2. before I have to stop, but I have actually made cornbread all the way through once, and on separate occasions I’ve left him with biscuits, flatbread, or cookies to roll or portion out and bake. Just today, I helped him fine-tune a big batch of pesto from the parsley that overwintered in our garden.
  • This spring, I’ve expanded my deck railing garden quite a bit, and I’ve been able to do more of its care. I’ve loosened and mixed dirt with a spade, filled pots, planted seeds, mixed up extremely stinky fish fertilizer (I know, I know, I’m a vegetarian; I plead that the smell of standard fertilizer is one of those things that made me feel sick even before I became ill. But as Chimp puts it, “I don’t think they harmed the fish; clearly by the smell of this stuff they just made them poop in a bottle”), watered (including managing lifting a watering can above my waist sometimes), and pinched things back. Last summer all I could do was go out and look at things, and do a bit of pinching.
  • The big development garden-wise is that I’ve begun to be able to manage to get out to the raised beds and the bed along our deck out in the yard. It means I have to go down some small steps and walk about 20 feet total, I think. We have four raised beds – or I should say, we’re about to have six, because Chimp has built two more. Out there, I’ve watered, harvested lettuce, cut down the overwintered parsley that was starting to go to seed, and picked snap peas.
  • The other big development is that I’ve finally seen all the upstairs rooms in person. I had made it up the stairs a few times previously – a couple of those times because Chimp had forgotten to turn off his alarm before he left the house – but up until recently, I hadn’t seen our guest room or the upstairs bathroom in the flesh. But now I have. It’s surprising how different they look than the pictures. Unfortunately now I want to redo the upstairs bathroom more than ever. By the time we get the budget together, 80s smoked glass and brass-toned shower doors will probably come back in. Sigh. There are parts of the basement I still haven’t seen, though, so I have the excitement of the laundry room to look forward to.

I don’t know what to attribute all of this to – is it the lingering effects of the short course of GcMAF, the continued Cheney Protocol, sustained good sleep, or just my body mysteriously turning things in the right direction? I can’t really say, but I’m grateful for every bit of it. I still spend about 98% of my time lying down, so I wouldn’t call myself “housebound” rather than “bedridden” yet, and I try not to ever assume that wherever I am, that I’m going to see sustained improvement from that point. But it is wonderful to have capabilities now that I haven’t had for a long time.

Posted in ME/CFS | Tagged , , , , , | 45 Comments

A Crash Course in Healthcare

Posted on May 10, 2012 by

I’ve written before about the series of events that ended in me falling ill, but one thing I haven’t told you about is the transition after that – the transition from being a healthy person to being a chronicially ill person, and the things I had to learn along the way.

So let’s begin this way: Once upon a time, I was really, really healthy – right up until I wasn’t.

When I fell ill in 2004, I’d never been sick with more than just your average cold or flu. Because of this, when my alarming symptoms started popping up, I had no idea what to do about them. I went to my gyno – my only doctor – who quickly gave me the brush-off because my symptoms didn’t seem to have anything to do with my reproductive organs. I thought it was her job to point me in the right direction, but she obviously didn’t think so. Eventually I found a GP near our house, and she started running tests, and then began sending me on referrals.

As I started to make the rounds of doctors, it never occurred to me that I might be dealing with the beginning of a chronic illness, not only because I’d always been healthy, but because my personality had long been particularly tied up with my devotion to healthy living. I’d been a vegetarian since my teens, had been following a whole-foods diet for many years, and was up religiously most days of the week before dawn to strap on my sneakers and run a few miles. Now as my health started falling apart, more than one person who watched me dragging myself through my days puzzled over the strangeness of it, saying something to the effect of, “This shouldn’t be happening to you, of all people!” I certainly agreed with them, but it didn’t change the fact that it was.

My symptoms were so weird, so sudden, and so dramatic that I thought there must be a simple explanation. I expected I would go to see some doctors, we would do some tests, the cause would be found, I would be given the proper treatment, I would undergo it, it would be effective, and I would go back to being healthy. That was the only scheme of interaction with medicine I really had for myself, despite the fact that I was married to someone with a chronic illness. (When we said our wedding vows in 2001, I thought I already knew who was going to be the sickness and who the health!)

One day a few months into my illness, Chimp and I sat in the office of my endocrinologist, waiting to hear the results of the round of testing he’d done. In our first meeting with him, based on the prominent pain I was having radiating down the front of my neck on either side of my windpipe, he theorized I was suffering from subacute thyroiditis. He seemed very confident that that was the source of the trouble. It made perfect sense, as I had just about every classic symptom – and he said if it was that, it was likely to go away on its own. Now, opening my chart to the test results, he looked over his glasses at me.

“Based on the testing we did, I’m sorry to say that I have no endocrinological explanation for your symptoms.”

Well, consider the other shoe dropped. Subacute thyroiditis had seemed like a sure thing. Now I was thrust back into uncertainty and the steadily increasing possibility that whatever I had would not be an easy fix. As I counted the duration of the tiredness from days to weeks, and then weeks to months, as more and more test results came back with nothing obviously amiss, I found myself thrust into a new experience: Learning to be an ill person.

It might sound ridiculous to say that you have to learn how to be ill, but you do.

There are all sorts of things I had never had to do or know before I started my intimate encounter with the healthcare system. Having been well all my life, there had been no need to know them. But once you’re sick, there are certain things that are useful to learn in order to be sick successfully. And by being sick successfully I don’t mean getting well, but learning to both manage and deal with your interactions with the health care system.

Among the things that I found I had to know or do:

  • Figure out the meaning behind all the boxes your doctor checked on the lab slip. In the process, scare yourself to death reading about illnesses associated with each test.
  • For fasting blood tests, become adept at the calculus of how long you can go without food as compared to how long the lines are likely to be at the phlebotomy lab.
  • Find out which labs have places to let you lie down for the draw so you don’t have to sit up for the test and then lie down involuntarily when they stick you.
  • Decipher the printouts that give your results, which will inevitably have developed hieroglyphic characters through some combination of multiple faxings and copyings.
  • Finagle short-notice appointments when a new symptom pops up, as if it helps. Learning the office staff’s names and sending treats at the holidays aids in this.
  • Become an expert at “new patient” forms, with the exception of always missing the back of one page that doesn’t seem like it should have a back side.
  • Request charts be forwarded all over creation, and always call before your appointment to be sure they arrived, because there is an unobserved black hole in 50% of medical offices.
  • Because any worrying symptom will inevitably occur on a Friday at 5:05 p.m. before a holiday weekend, when that happens, have the on-call doctor paged. That’s what having a doctor on-call is for. Really.
  • Write down your questions in advance, because the minute you’re engaged in conversation, the brain fog will suddenly descend to zero visibility.
  • Cultivate the skill of staring at waiting room fish tanks…enough that you begin to wonder whether you’re entertaining the fish just as much as they are you.
  • Avoid touching anything in the waiting room. Sick people sit there, you know.
  • Condense your tale of woe enough that you can get it all out before the doctor tunes out and starts talking over you.
  • Realize that when you encounter Dr. Asshole (and if you are sick for any length of time, you will meet Dr. Asshole, probably more than once, and unfortunately said physician will not be helpfully labeled on his or her coat as such), that you do not have to stay her patient, because there are plenty of Dr. Non-Assholes out there.

Besides all that day-to-day stuff, the thing that surprised me the most to learn was how different medicine is than how it seems from the outside. I had never seeen so many doctors in such quick succession, and besides a couple of dermatologists, I’d never really seen a specialist before.

Doctors have to know thousands of things, and as talented as they are, they are hampered by the limits of the human mind; they can’t possibly stay up to date on all the developments in every ailment. The more garden-variety your thing is (and the more concrete it is, symptoms- and testing-wise) the easier a time you’ll have getting it diagnosed. On the other hand, if your thing is not a common thing that doesn’t have a straightforward test, the more likely it is that you won’t quickly get the help you need.

Specialists, I found out to my dismay, are not the sleuthing Dr. Houses of the popular imagination. They know a set of things in more depth than a GP, but in daily practice, they have, let’s say, half a dozen or so things they focus on treating and which they know a great deal about. But if your thing is not one of those half-dozen things, they don’t generally say, “Yes, let’s dig in here; I’m perfectly happy to spend my limited time investigating something that’s out of my depth.” Nope. You’re basically bounced back out on the street.

When none of my test results came back abnormal and I was still exhausted months later, I finally did get officially diagnosed (my GP had said “CFS” aloud by four months, and formally diagnosed me after six). But I didn’t know how to find a specialist in my illness, and I didn’t even know what specialty my illness fit into. But that turned out to be a trick question, because ME/CFS doesn’t really have a home among the specialties. I’ve found that people specializing in it are a scattershot bunch: rheumatology, endocrinology, and plain old internal medicine, mostly. And there’s a bit of circular reasoning in play here: When you have a thing that doesn’t fit into any of the specialties, it doesn’t get the kind of respect it deserves, sadly, because it doesn’t belong to any of the specialties, and you’re basically SOL.

As I started reading about the illness it was becoming increasingly clear that I had, it also became increasingly clear that there was no known cause, and no known cure – only “management,” which is sort of a euphemism for “You’re superficially being ‘treated,’ but in truth we’ll be of no actual help to you; you’ll either get better or you won’t on your own, and the best you’ll get from us is sympathy.”

If I’d found myself in a medical system that had a place for me, or that took my diagnosis seriously, or anything like a test, a treatment, or at the very least some useful advice as to how not to make myself worse, I might not have had to learn all of the above. And if I hadn’t had to engage in that exercise in futility, I wonder how much different my outcome to now – or the outcome of any of the millions of people diagnosed before or after me, continuing right up to the present moment – would have been.

Posted in Life Before, ME/CFS | Tagged , , , , | 11 Comments

Fear Itself

Posted on April 19, 2012 by

I have two major phobias that I’ve had as long as I can remember: A rational one (as phobias go, at least) and an irrational one.

I have a fair number of minor ones, too, but I’m going to keep those to myself for now, lest one of you force me into a body of water I can’t see the bottom of and thrust a pill I’ve never taken before into my hands while serving me food that may have meat in it.

Oops.

Anyway, the rational one is of needles. Isn’t that a handy thing to be afraid of for someone with a chronic illness? The irrational one – well, it’s weird. When I was a toddler, old enough to be in a walker, and was scooting around the living room one day, my mother realized that I was chewing something. I shouldn’t have been chewing. She fished around in my mouth, found a piece of plant matter, and realized (this being the 70s, and this thus being the standard-issue house plant) I was standing next to a philodendron, which I’d apparently mistaken for an acceptable snack. I guess I had those vegetarian tendencies from the beginning.

She called the poison control number, and they told her that I would be okay, but that she should make sure I didn’t eat any more philodendron. This, again, being the 70s, she had been trying to raise me without using the word “no” to scold me, and this was the first time in my life she stressed to tiny me that something was dangerous and that I must not do it.

This phobia has improved and regressed over the course of my life. In this 1997 snap, you can tell I’ve been crying from terror because my mother forced me to go out and cut rhubarb from my great-grandmother’s rhubarb patch.

The next time we were out in the garden, she called me to her. Between the two of us was a weed, an enormous weed, with enormous leaves. She beckoned. I stood my ground. She beckoned some more. I didn’t move. Not realizing what the problem was, eventually, she picked me up and carried me bodily past the enormous weed with enormous leaves. As soon as she did, I started to scream, and ever since then, I’ve had a fear of plants with big leaves. I’m afraid that if I get too close to them, that they’ll wrap themselves around me, drag me into their clutches, and eat me.

I know plants don’t eat people. I told you it was irrational.

So, basically, walking through a (to others) beautiful field of sunflowers waving in the summer breeze (ack, they’re coming for me!) or finding myself suddenly face to face with a paulownia tomentosa is my greatest fear.

Other examples of how this has affected my life: In high school, I always took the long way to the bus stop, because the shortcut through the woods was lined with paulownia. When I started shopping for my own groceries, I steered a wide berth around the collard greens in the produce department because even big leaves with the stalks cut off were too scary to approach. Later, an apartment complex Chimp and I lived in had bear’s breeches everywhere, and when we came to check the place out, the idea of having to run the gauntlet of those plants every day was very nearly a deal-breaker for me. And since I know you’re about to ask, no, I have never seen the musical or the film version of Little Shop of Horrors, and I have no desire to.

I was feeling particularly brave and not a little self-deprecating during this 2000 visit to an Australian botanical garden.

The upside of this phobia, I suppose, is that it’s saved me a lot of money on tropical rainforest vacations.

As for the needle phobia, well, that one’s pretty normal, but mine’s especially bad. I used to think it was just because it hurts, even though I know it doesn’t hurt that much. What it’s really about, I’ve realized over time, is about having to give up control over my body temporarily and let somebody hurt me. I know it’s going to hurt, and anticipating that makes it incredibly difficult for me to override that basic fight-or-flight response and lie there while somebody sticks me.

The earliest I remember my needle phobia being a big problem for me was age 11. When I was a baby, I’d gotten my one-year MMR vaccination just a few days shy of my first birthday. Ten years later, that tiny oversight meant I was technically out of compliance with the schedule and needed a booster. Finding that out and having to get the shot was traumatic. The only thing that got me over the hump in that case was that if I didn’t get the booster, I couldn’t go to summer camp.

I managed to avoid needles almost entirely from that point to about age 20, when my doctor ordered bloodwork at a routine physical. I couldn’t figure out how I was going to get through it, and in talking about it with my mom, she suggested that I visualize something comforting and peaceful, like a litter of kittens playing in the barn on our family’s farm in Indiana. Kittens! Genius. For a major ailurophile like me, nothing’s more relaxing than watching a bunch of kittens play, and adding in the family’s homeplace would make it even better, I thought.

The day I’d decided on for the test, I arrived at the Kaiser lab and discovered that instead of individual exam rooms, it was a big open-plan place. And worse yet, as I walked in, several people were in the midst of getting draws. This was ten kinds of bad news, because my phobia was so bad at that point that I couldn’t bear to see tubes or syringes, much less needles or anything associated with the process – at all. I was already starting to feel a bit dizzy when the phlebotomist who was holding my lab slip tried to guide me to one of the chairs with a wide arm.

“Oh no,” I said to her. “I have to lie down. I might pass out or throw up.”

So I was steered to a chaise in the center of the enormous lab.

“Kittens.” I thought to myself. “Kittens kittens kittens.”

I heard her sit down next to me as I looked the other way. I closed my eyes. “I have a pretty bad needle phobia. My mom told me to think about kittens.”

“Kittens?” she asked, as I heard her pulling the gloves on.

“Kittens. Because it would help me relax.”

“Well, whatever works for you.” She slipped the tourniquet around my arm and secured it, then tapped at my skin.

“Kittens. Kittens kittens,” I murmured under my breath. Now she was swabbing the inside of my elbow with an alcohol wipe.

“Kittens kittens kittens,” I said quietly. “Kittens in the sunshine in the barn. Happy kittens. Kittens kittens. Lots of kittens. Stripey kittens.  Fuzzy kittens.” Despite the mental imagery, the unseen rustling noises at my right were causing me to tense up all over.

The phlebotomist pulled my arm toward her and moved into position. I tried to resist the urge to wiggle away, and settled for leaning as far away from my arm as I could, trying to will myself to forget it was part of my body.

“Kittens!” I squeaked from between gritted teeth as I felt her come toward me. I winced and braced myself. She pushed the needle into my arm.

“KITTENS KITTENS KITTENS! HAPPY KITTENS RUNNING AND PLAYING AND JUMPING AND….KITTENS KITTENS KITTENS KITTENS KITTENS KITTENS KITTENS KiiiiiiiiiiiiiiiiiiIIIIIIIIIITTeeeeeeeeeeeeeeeeEEEEEEEENS!”

She withdrew the needle and pressed a cotton pad against my arm. “Okay, we’re done. Hold that.”

Despite my attempts at bravery, I was crying now. ”Kittens kittens kittens,” I sobbed. “Kittens.”

With tears streaming down my face, I opened my eyes as she taped down the cotton. “Kiiiittens. Kiiiitteeeeeeeens,” I keened, the adrenaline draining from my body.

And that was when I looked up…and realized that everyone in the place was staring straight at me.

Posted in Life Before | Tagged , , , , , | 38 Comments