Thursday, December 29

aqua aerobics and asexual cookies

Little Gen brought this gingerbread woman home because one of her arms is shorter than the other...

She's politically correct like that. Actually, there are no gingerbread men or women at the restaurant where L.G. works; there are only gingerbread people, or ginger folk. So I don't know if this is a ginger man or woman or trans-gendered ginger because they are intentionally sexually ambiguous. Pink dress or pink toga, you be the judge.

But enough about cookies. Or are they yeast-free breads with a preference for sweetness? I'd hate to pigeon-hole anyone. 

In other news, the one-armed girl has recently joined the local YMCA. And despite her severe aversion to the familiar song (and particularly the accompanying gestures) played at major sporting events, the indoor pool sealed the deal.

It's been a new adventure for me, this gym membership thing. Before this, the closest I'd ever gotten was a temporary complimentary gym membership that I got in the mail. I think I went twice.

My first day at the pool, I encountered a completely naked older woman in the showering room who informed me that I had just missed the aquatic aerobics class.

"Excuse me," I said, trying desperately not to look at the sudsy soap she was lathering in her lower regions.

[It should be here stated that I haven't had much experience with group showering. I was schooled at home where we were privileged with private bathing times, and when I did go to public school, I was excused from classes involving showers due to a back brace that I had to wear all day.]

There are times in life when I wish I weren't so approachable. Group showers are one such situation. However, understanding the concept, I attempt an Emperor's New Clothes mindset and soldier forth. Fortunately I've worn my fair share of hospital gowns and one might as well go naked, am I right?

Unfortunately, between the water in my ear and the echoing shower room, I had to advance toward Mrs. Lather to get the full story. I promised I would try to make the next class. 

And the following Friday, true to my word, I arrived in time for the Silver Sneakers aquatic aerobics class. Imagine for a moment a pool full of retirees and me, the one-armed girl.

Christmas cookie icing
I nod to Mrs. Lather who is warming up in the shallow end, but she doesn't appear to remember our shower room meeting.

As I make my way into deeper water, I encounter a group of ladies who rave about the upcoming class, but assure me that I can participate just as much as I want, or just bob around in the deep end if I feel like relaxing.

Angela, who appears much younger than me, leads our class with grace and the forgiveness of a kindergarten teacher, unwilling to let the talkers in the back keep us from our underwater leg figure eights.

Mrs. Lather offers helpful hints from time to time, like giving myself enough room and holding onto the side of the pool for balance. I tell her that I'm excited to work my abs because I've been taking an aerial fabrics class and she nods with raised eyebrows like she might if I'd just admitted to being a martian.

Getting out of the water, I could already feel my thighs aching. Turns out senior aquatic aerobics is just my speed. I've found my demographic.

It was much preferable to my next visit when I happened to get in the water just before a class of children who sat patiently around the pool awaiting their turn. When I reach the deep end of my lane, a small gathering of little girls grin from the side.

"What happened to your arm?"

"How can you swim with one arm?"

I smile back, suddenly envying the polar bears behind glass at the zoo because they never have to explain themselves. Some days, you just can't get out of the office.

"Well," I say...


Thursday, December 22

the soul's worth

My favorite Christmas carol is O, Holy Night. I decided this when I noted the lyrics, "Long lay the world/in sin and error, pining/Till He appeared/and the soul felt its worth...

Christmas time capsule
It surprises me that suffering causes people to question the existence of God. Since I was small, it's been the other way around. It's always when I am most acutely hurting that I am most convinced of a greater source of compassion. 

I don't remember the particular ailment, but I do remember sitting crumpled over on the toilet, my toes barely reaching the floor. I felt agony that my parents were powerless to alleviate. And I knew in that moment that I had need beyond human means to meet. I groaned for God because there was nowhere else to groan.

I got sick frequently as a kid; bedridden sick, as my mom would say, from earaches to tonsillitis. I was hospitalized at five for diarrhea-induced dehydration. They attached me to an IV. We called him Harry. Harry went everywhere with me, even to the toilet. 

I was seven when I watched a man with cerebral palsy talk about how God called him to be a preacher. He spoke his story with awkward gestures in halting, varied pitch. It was one of the most painful and beautiful things I have ever seen. I wanted God to use me like that.

"Whatever you want me to do, wherever you want me to go," I promised through tears.

It wasn't till many years later that I began to understand what I was asking for. I'd become so competent at succeeding, I figured that's what God wanted, and I was handling it. Then, just when I was really getting started, it all fell apart. For more on this lovely time of my life, see previous posts. Suffice it to say, it was way beyond diarrhea. 

I was pissed, and I'm not talking drunk, though that might have helped. Unfortunately alcohol was strictly forbidden for my recovery diet. One night, in a fit of frustration, I looked out the kitchen window into the dark.

"What are you doing to me?! I can't take it anymore. Say something, dammit!"

I waited. And then I heard it. Not audibly, thankfully, because as much as I wanted a sign, that would have scared the shit out of me. 

"I love you." That was it. Well, thanks a hell of a lot, I thought.

Not long after that, a friend gave me a book called the Ragamuffin Gospel by Brennan Manning. It was early July and I was about to move back east, a complete failure as far as I was concerned. Also, I'd never been to the Grand Canyon. One of these wrongs was more easily righted. I jumped in the car with my mom and we set out to see, in my opinion, a huge hole in Arizona. I threw the Ragamuffin Gospel in the glove box. 

"Never confuse your perception of yourself with the mystery that you really are accepted," says Manning. That was exactly it; I'd confused Divine love with a mirror reflecting my shortcomings. Manning further quotes the Apostle Paul, "the Lord said to me, 'My grace is sufficient for you, for power is perfected in weakness.'"

Sitting on the rim of the Grand Canyon, the sun setting on a red horizon, I felt minute, my decisions of small consequence next to such fathomless beauty. It was a lot like watching the preacher with cerebral palsy.

"How deep the Father's love for us/How vast beyond all measure..." cries the hymn. It didn't matter how far I fell, I would never reach the bottom of Grace.

Sometimes people come to the knowledge of God in a euphoric experience of enlightenment. I generally find God on the toilet. But really, when else are we more exposed, more vulnerable, more open to divine intervention?

But we'll never fully understand, not in this life, what happened on that Holy Night. The Son of God born into an animal feeding trough is about as crazy as power perfected in weakness, or a girl who found her calling in a missing appendage.

What I do know, is that my soul feels its worth.


Thursday, December 15

joy of giving re-gifted

I was all prepared for another uneventful Christmas season here in the (currently) rainy Southwest. But so far, it's been anything but.

It's just Little Gen and I at the homestead, and I already gave LG her Christmas present: the previously mentioned three hundred and fifty thread count goose down 'boyfriend'. She wanted to get for me a decorative bull skull, horns included, as one ofttimes finds hanging on western decored walls. I've wanted one for some time and no, I have no good explanation for it.

So, on a recent snowy day we set out in search of said fleshless carcass head, but after two stops and much snow crunching underfoot, we came up empty-handed. We did however manage to stuff our faces with chili cheese fries from Sonic. All in all, not a wasted trip.

Wrapping treasure

But after scouring the virtual shelves at, gifts virtually purchased and electronically mailed east to the rest of the family, I thought all my shopping finished. But I was mistaken.

[I would like to interrupt this exposition to draw your attention to my particular aversion to gifts. It's not that I don't enjoy giving things to loved ones, but under the current pressure of holiday buying, I find it particularly disagreeable to run about in a crunch, simply because I need to cross another name off the list.

And it must be mentioned that I've been known, on frequent occasion, to give awkward and/or inappropriate gifts by accident--the awkward part by accident, not the gift, just to clarify. Just ask Dave, who received a rainbow-colored wind sock during a hospital stay when I thought his room could use some color. Fine print: Dave is not gay. Or take the paper lamp shade with the pretty leaves drawn on the side that I brought home from London for my sister. No, at the age of 21, I did not recognize cannabis.

I don't even like receiving gifts, for any occasion. It makes me uncomfortable. And complicating the situation, I have very particular taste (some call it finickiness) and as irritating as it can be, it's incurable. So a gift given without consideration of this particularity can be awkward at best, disastrous at worst.

With an approaching holiday, I start to panic if I've made new friends recently or find myself in any way romantically associated.

"Things were going so well until he gave me those peach bath salts; if only he'd gone with lavender!"

It can ruin relationships, I tell you.]

Judge if you will, but suffice it to say, presents make me nervous. So I'm not sure if it was self-inflicted therapy or sheer lunacy that made me offer to take three girls between the ages of nine and thirteen shopping for Christmas presents this week...on a the mall!

Yes, folks, the mall. A place where, at this time of year, one is just as likely to get lost or trampled as sit on Santa's lap. On our three mile walk to the entrance from the parking lot, I advised the girls to hold me down and force-feed me lemonade if I started to panic. They promised they would. Then I remembered how lemonade gives me a sugar high, and they said they'd make me breathe into a paper bag instead.


But as with most things, the anticipation was far worse than the experience. And though I spent more time in Wet Seal than I'd like to admit to anyone over the age of 25, I was quite impressed with the girls' efficient decision-making ability, buying one gift every fifteen minutes on average.

Does it matter that most gifts were opened as soon as we got home, including some meant for other friends, that were opened and played with until they broke? Not in the least. We had a blast.

I got so excited, I went shopping again two days later with my Dragon Boy. We shopped for his mommy. We shopped for his dog. And then, of course, we shopped for him with the allowance money he had left. We even managed a ride on the carrousel at the mall. Then we went home and unpacked and wrapped our treasure.

So maybe it's just that I need to lighten up; not put so much expectation on one ribbon-laced box. And don't give seasons one and two of Glee to anyone for any reason.


Thursday, December 8

ode to cold

It's that time of year again, when I'd sooner lose another arm than go to the mall. Actually, that's how I feel about the mall all year round.

We've had a cold snap lately which we caught from California when she sneezed in our direction. But I'm actually enjoying the cold. I like to imagine I live in a place where it's this cold all the time, and I wear boots and scarfs every day, and go to work on a dog sled. I'm certain a lot of people in cold places go to work on dog sleds. 

The only hiccup is I haven't much work to go to these days. Things have slowed at the farm significantly. The horses have been put away in the barn with blankets and heated water. And Carson the cat is most likely curled on the highest hay bale in the feed room.

What to do? There are only so many days Little Gen and I can go to Java Joe's and pretend that we are just taking a break from much more important napping. We've stopped in for three consecutive mornings so far this week and neither of us have that kind of money. They do make a mean raspberry scone...

Somewhere a little hand is cold.
I tried to drive to Santa Fe on Monday for an aerial fabrics class, but fifteen minutes down the highway, snow was packed on the road and the exit ramp was covered in ice. No need to risk my life driving so that I can risk my life climbing huge ribbons hanging from the ceiling, I decided. 

So, what did I do instead? Went to Java Joe's, of course.

At risk of stating the obvious, I should be working on the book. And I am. I actually opened up the first chapter for some polishing yesterday. I waded through, re-worded, cut and pasted. It was an arduous ten minutes, I tell you.

Then I went back to internet searching for the perfect red shoes to compliment a wool dress I recently spent too much money for. No luck so far, but when I find my shoes, it's all gonna be worth it. I'm gonna look amazing...for that one evening per year when I have reason to dress up.

I'm drinking more beer. Don't worry, it's just to keep warm.

At night, Little Gen and I sleep with our "boyfriends" to keep cozy. Three hundred and fifty thread count goose down comforters that don't mind warming our cold feet--best boyfriend a girl could ask for; a little light on conversation, though. 

"Hmphh," our mother says, "I don't know why you are sleeping with your boyfriends anyway. Why not your husbands?"

Little Gen and I look at each other. I mean, I want to get married, but he's got commitment issues...

I believe winter is for reading and drinking hot cider...only hot cider gives me a sugar high that makes me think someone is waiting behind doors to grab me. I'm trying to read, but the lack of instant gratification required by my generation makes sitting down with a book seem like too much work.

In fact, everything seems like too much work when it's cold. Removing my person from my bed in the morning is a challenge akin to climbing Everest, I'm sure.

Speaking of mountain climbing, this dude is training to scale Mt. Kilimanjaro with no arms or legs...

Photo courtesy of

Really? Putting your own pants on in the morning isn't challenge enough?

These days, I'm lucky if I get mine on by lunch time. I think I'll put off Everest for spring.


Thursday, December 1

left out

The world was not made for one-handed girls. Or boys, for that matter. Case in point: mittens are not sold by singles. As you may be aware, most mittens, gloves, or other hand fashions are sold by the pair.

Thus, as a one-armed girl, I have a constant collection of unused lefties that live in a box or a basket somewhere in the house, while their counterparts get regular use. I am reminded of this now that it's starting to get cold again, and I decided to bring out the never-used lefties for some fresh air. I think they appreciated it.

You may notice that all of the pictured gloves are fingerless. There is no deeper meaning for this, I just find them utilitarian; I like to have my fingers handy.

I don't mind paying for a pair of gloves, only to use one; it just doesn't seem right that one of the pair should get no use at all, packed away with no purpose. But what's a one-handed gal to do?

And what becomes of the left out mitts? I honestly couldn't say; out of sight, out of mind, I suppose. Eventually the right mitt is worn out or lost, and one day digging through boxes, I may come across the other, brand new and clean as the day it was bought. But most likely, it is just forgotten forever, never given a use, never needed.

Like my right mittens, I've been living life singly for some time. I am without pair, you might say. I've been single for so long, actually most all my life, that it seems very normal to be just one. There was a time when I imagined I'd pair up in college as my parents had. Then I planned to marry at twenty-eight because I would be old enough to be situated in a career, but still young. Now in my thirty-second year, I'm telling myself that people who marry in their forties are certainly more self-actualized; it keeps me from developing a nervous twitch.

In fact, I've never much thought of myself in the context of a pair. And when I find myself in a paired situation, though excited by the prospect, I always feel a bit uncomfortable because it doesn't seem to quite fit. I often feel like a character in a book or movie: "the girlfriend." I'm taken home and introduced to friends, but I can never shake the sense that it's all make believe, that we'll soon be taking our bows and the curtain will drop.

A couple years ago, I bought a pair of leopard print fingerless gloves at Target. This was because they were the only pair of fingerless gloves they had, and not because I am particularly fond of animal prints. But I've been persistently complemented ever since because of it. One day, a middle aged clerk at Staples remarked how much she liked my glove. Suddenly inspired, I ran out to my car, fetched the left leopard glove, ran back inside, and gave it to her.

"Here you go," I said, much to the woman's surprise, and I'm sure amusement of the other patrons. I wonder where that glove is today. I hope it had a better life than it would have in my glove box.

Several years ago, I felt, for the first time in my life, a lack of partner. I'd reached, by complete accident, a contented state which can usually only be attained when some dreams die and you find in yourself what can never be lost; and the only thing left to do is share it.

It occurs to me that we are made for pairing. Maybe not because we need to have a mate. Not because we cannot be alone, but because, in coming together, we allow each other to be of use. In allowing yourself to be loved, you allow another to love. To me, this makes beautiful sense.

So where's my other single? I suppose I'm waiting for the right fit. I'm sure my scene is coming up, even if it is in the second or third act. In the mean time, if you know someone with one left hand, have I got a box full of gloves and a proposal for him...


Thursday, November 24

what happened to my arm

I'd just started two loads of laundry at the local mat, sat down to mind my own business of reading Tom Robbins' Another Roadside Attraction, when the woman sitting two seats down said:

"What happened to your arm?"

Let's just stop there for a moment. This question, this basic, yet strangely puzzling question has been posed to me so many times in my life, it's afforded great opportunity for analysis. I will here unload a lifetime of said question-inspired pondering.

"What happened to your arm?" The question itself actually presupposes that something happened, that my arm was acted upon in some way or, as I've concluded is more likely the case, is presumed missing altogether. In fact, there is no logical way for me to answer that question as stated. As far as I know, nothing "happened" to my left arm, it just developed as it is along with the rest of my body, and here we are. And if the questioner is suggesting a post-natal occurrence, I wonder if they suspect I was the victim of a magic trick gone awry.

Therefore, when asked what happened to my arm, I am tempted to answer simply, "Nothing." Judge and see if that is not the proper response. I am also tempted to say, "I lost my arm in a climbing accident," as my best friend once told her younger brother, to which he responded with sympathy and solemnity, "Really?" This one incident tells me that logic is not always necessary to assuage curiosity.

Yet, consistently, this is the exact question posed, with exactly that phrasing, over and over again. There is one derivation; I am sometimes asked how I broke my arm, but that is even more of a brain boggle. Has anyone ever known, in the history of the world, of one case in which a broken arm turned into a much smaller fin with three webbed fingers? Sorry to get so graphic there, but it was necessary. I have to say, at least, that I am impressed with the open-mindedness which I sometimes discover. Apparently, some people still believe that indeed anything is possible.

However, in my experienced reality, I find it more practical to answer the essence of the question rather than the literal implication. [No, I did not study philosophy in college because it made my brain hurt; I chose the lesser of two evils and went with English Literature, which makes my brain hurt a little less.] So, to answer "What happened to your arm?," I always say with a smile, "Oh, I was just born that way." 

But I digress. Back to the local laundromat. Here is where the story takes an unexpected turn....

The woman then said, "Can I see it?"

Ok, a little unorthodox, but I don't put up much of a fight. I opened my jacket buttons and pulled Finneas out, holding him out on my palm like a minnow fish platter.

"Can I touch it?," she asked.

Well, we've come this far...

"Oh, it's so cute!," she cooed, stroking Finneas with her index finger.

She was so excited, when her washing partner returned, she asked him, "Hey, did you see her arm? It's so cute." She then coaxed me to show him. I obliged, of course.

Now, believe it or not, comes the bizarre part of the story.

"Do you have any makeup?," she asked.

Ask me about my arm. Ask to touch my person. But a total stranger asking to borrow my makeup? That's where I draw the line. Thankfully, I'm not the sort of girl to carry makeup on my person. Plus, there's really no need for it at the laundromat where there was a guy literally doing his washing in his boxers, presumably because he'd run completely out of clean trousers.

After my admirers went outside for a smoke, I smiled a stifled giggle, shaking my head. Ironically, I suddenly felt very normal. But I have to say, for all the times I've repulsed onlookers and sent babies screaming to their mommies, it's gratifying to know some people see with different eyes; emphasis on the different.

Aren't we all just another roadside attraction?

But the next time someone asks what happened to my arm, I'm gonna say a miniature Chihuahua Terrier chewed it off.

It could happen.


Thursday, November 17


Every kid has a superhero phase. Well, not every kid. I didn't.

My sisters and I were too busy playing Holocaust concentration camp survivors. There were no spandex, cutout felt letters, or capes involved. When we played, we meant business. And may I remind you, abnormality does not a superhero make.

And so, though I was planning to write a very thought-provoking analysis of the laws of attraction to physical difference and their moral implications....yawn...(but really, I was), I've actually spent the better part of today turning myself into a superhero. And it was a lot more fun.

I proudly introduce to you...

Faster than a speeding bullet (until she needs a nap), more powerful than a locomotive (in her own mind), able to leap tall buildings with a single bound (occasionally in her sleeping dreams)...OneArmGirl to the rescue! Ahem, with her trusty sidekick Finneas by her side of course...literally, never leaves her side...and he was most incensed that he was censored by a cape in the above depiction.

Super OneArmGirl came into existence this week because of OneArmBoy who suggested we join forces to combat evil. At least, that's what I assume he was implying. We are currently recruiting other handicapped superheroes, but they tend to stay well under the radar, as you might imagine. They can be very difficult to detect because most are expert at anonymity. It's one of our greatest powers.

In the mean time, I will just continue to play dress up in my living room and get carried away on my imagination, the most important superhero power.


Einstein said, "Imagination is more important than knowledge."


Thursday, November 10

digital debut

Not long ago, I had occasion to dig up some baby pictures of myself. Actually, I had occasion to call my mom and ask her to dig them up, scan them, and email them to me. But one of the results of my photo journey to the past was a happy reunion with this:

A photo taken of me at one year. It's a favorite, I think mostly because it makes me laugh. Notice my left leg tucked under the dress, creating the illusion that I am missing both an arm and a leg on that side. I'd like to think this was an early sign of a career in comedy.

I did usually keep one leg pulled back, using the other leg to pull myself along the floor instead of crawling. At least I had some diaper padding to scoot on; well, a cloth parents were hippies.

But just look at those eyes and tell me there wasn't some mischief afoot. It's like she knows, one day, Joey will bite her arm.


Thursday, November 3

strong arm

Apparently, my body has decided now is a prime opportunity to get all sorts of toxins out, and yesterday morning I found white spots on my tonsil. So, here I sit, writing with about half a brain cell. The other cells are too busy contemplating the meaning of their own existence, and are taking a sick day.

But like so many other times when I think I've finally reached the end of my material, something comes along just in time. Today it came via Netflix, in the form of a documentary on professional arm wrestling. Turns out, until just a few years ago, a quiet and unimposing American by the name of John Brzenk was the undefeated world champion in his middleweight class, and known for beating heavyweight champions as well.

The film follows Brzenk and his two most serious, and much younger competitors, Alexy Voevoda from Russia, and Travis Bagent from West Virginia. I'm not surprised to see top level competition coming out of Russia, a country that produces top athletes like a college education produces debt. But I had no idea my very own country dominated in the sport of arm to arm combat.

I'm rather surprised I actually watched the documentary at all. Just this week, after my first lesson in disc golf, I was reminded what little interest I generally have in sports requiring heavy arm use. I avoid volleyball like the plague and the only thing I find interesting about golf is the carts. I've been known to challenge guys to arm wrestle, and I can put up a good fight, but the average man usually beats me; or lets me win.

A few minutes into the film, I'd completely forgotten how silly I think arm wrestling, and weight training in general. I was nearly holding my breath with each match. I felt like I knew these three men, and I was developing definite preferences. 

After my second vaulting class last week in over a year, I was barely able to reach my right arm behind my back because it was so sore. My arm is stronger than average, but definitely not used to lifting my body weight onto a moving horse. After several attempts, we decided to call it a day.

"It has to be in the jump and strength of my legs," I brainstormed with the coaches, "I can't afford to over-use my arm." But the next few days reminded me that it doesn't take much.

The interesting thing about arm wrestling is how an athlete's whole worth is determined by the strength of one arm. It all comes down to that one body part. Although, watching the difference in demeanor of the strong men, it becomes clear that, as with anything, physical strength is just the part you see. Bagent was louder, more of a showman, using verbal intimidation. But Brzenk was quiet, reminding you of the boy next door, and Voevoda seemed an intuitive, Taoist fable-quoting, gentle giant.

Strong-arming it
In the end, Brzenk, at the age of forty, once again defeated all his middleweight competition. And although Bagent had previously defeated Voevoda in the heavyweight class, Voevoda reclaimed his title. So it came down to the final match between Brzenk and Voevoda.

I was nervous, focused as I could be while drugged with cold medicine. The first go was a bust because their hands slipped. But on the second try, Voevoda pulled Brzenk from his long-held rank to become the undefeated world champion. 

As much as I liked Brzenk's unassuming demeaner, and I liked him a lot considering I'd never even heard his name before, I was happy for Voevoda, because just being Russian can't be easy. And apparently, the ladies aren't that impressed with physical prowess: "The Russian women, they want money," Voevoda says shyly.

Trivia tidbit: Bagent's father, a strong man in his own right, said he was first inspired to begin arm wrestling by a man who only had one arm, the other having been amputated, or "cut off" as he put it. But I don't think I'll train for the sport, because even though I may have an edge, it seems a little masochistic when you don't really have an arm to spare.

But I am going to keep trying to get up on that horse, and I certainly have more respect for arm wrestling. I have to admit, I hold to a paradoxical double standard:

I like men with strong arms.


Thursday, October 27


I spoke too soon. The day after last week's post, I woke up with a swollen throat and a heaviness that tells me the glass ceiling is going to be lower for a while. I phoned to cancel the day's plans before I got out of bed.

Most basically, that's what it's about, living with chronic illness. And it happens to me a lot because, even though I know I have to pace myself, my desire and drive inevitably gets the best of me, and I overdo. 

I get up to boil an egg for breakfast because I need protein, but something small and easy to digest or the burning will get worse. I make coffee too, because I can only handle so much deprivation. Then I consider what I am going to do with a day in which I should do nothing at all. Have you ever considered the difficulty of doing nothing? I say without hesitation that it is one of the most difficult things I have ever attempted, and after seven years of practice, I'm still an amateur.

I try to excite myself with promises of a whole day to catch up on new iPhone apps, or lose myself in a season of Parks and Recreation, or pick up that book I've been eying with envy for weeks without a page turned.

But I probably won't do any of those things because inevitably I realize I don't even use the apps I have now, that my smart phone is probably smarter than I; and I hate that groggy feeling of wasting hours watching Netflix offerings; and reading takes more mental energy than I can afford.

So I putter about, trying to find something that even a zombie could manage, but when I have a bad day like this (or two or four), I'm consumed by apathy and if I actually start something, I find it impossible to concentrate, and I'm without energy to finish.

I try to rest, but it's too late, I'm already in the burn zone when my body is quivering with energy it doesn't actually have. I'm baking from the inside out. And my mind is spinning with all the things on my desk, the completion of which suddenly seems very urgent. Lying in bed, I feel myself falling backward, hundreds of papers with scribbled writing topics and phone call reminders floating down on top of me. I actually feel guilty for being sick, again.

Friends call wanting to hang out and when I say "I'm not feeling well today," they say, "Oh, sorry. Is there anything I can do?" But there isn't anything they can do, so I go back to bed wishing more people knew how to do nothing, with me.

It's better than it used to be. I've come a long way and a few years since that first phone consultation with Dr. N. I've had a lifestyle overhaul. I'm not doing what I used to do, not making nearly as much money, and sometimes a ride on my bike and an afternoon nap feels like a very full day.

The adjustments hurt and chaffed at first, but gradually I changed, not just my pace, but my entire direction. I started doing more writing and less editing. I stopped taking sunsets for granted. And so changed my dreams. Most days I don't even think about who I used to be because I really like who I am.

I get up and go outside. Sitting on my front stoop, the warmth of the sun quiets the voices that say I need to be productive. When I was still baby-stepping into this season of my life, I learned there is no faster-acting medicine than a walk out of doors.

Six months after my diagnosis, I was sorting through old keepsakes and happened upon a picture of my college friend Amy and me. We were dressed up, I wearing a skirt and prosthetic arm under a deep blue collared shirt. But what struck me was the anticipation emanating from our faces--we were hungry for life. Looking at the photo, I suddenly remembered what it was like to be happy.

In a burst of desire and tears of relief, for the first time in a long time, I thought, "I want to live!"


[handicap #3, part 4 of 4]

Thursday, October 20

circus season

We interrupt this string of rather bleak posts to remind you that we still prefer to have fun on this blog. And by 'we,' I refer to myself and my contingent of hook-armed rabbits. If you haven't read about the hook-armed rabbits unearthed a few years back in my grandparents basement, you should do so now. It is well worth your while.

[I am suddenly struck by the strangeness of the phrase 'well worth your while'. What does it mean, anyway? What is my while and how does one determine its worth. A more skilled speaker of the English language, please advise.]

But speaking of hook-armed rabbits, Ferb and Mrs. Ferb (sadly, still nameless due to my shameless laziness and adult onset memory loss--someone did suggest a good name and I forgot it), have recently had a wardrobe change. Now that Ferb has discovered Finneas' custom-designed mitten fits his arm perfectly, I'm not sure we'll be able to get it away from him.

Autumn is well underway and I've got the itch. I want change, something different. I want to be reminded that I'm alive, and Little Gen flushing the toilet while I am in the shower, causing an unannounced 20 degree change in water temperature, just isn't going to cut it. I'm hungry to move and stretch and grow.

So I did what everyone would do, I went to an aerial fabrics class. What is aerial fabrics, you ask? Can I say 'gymnastics on fabric'? Imagine a huge ribbon of fabric hanging from the ceiling, on which a person climbs, hangs, spins, and generally makes gravity appear inconsequential. I personally was barely able to get my feet off the ground, and my arm is still sore. And in case you are wondering, no, this is not something that people with chronic fatigue generally get into, but I am, apparently, a glutton for punishment.

But once I managed to get on the fabric, I did attempt, and nearly achieve one of the more difficult maneuvers of spinning and pulling my legs into a sitting position. And of course, everyone was very impressed. If you've got one arm, it doesn't take much.

In a move of excitement and poor scheduling, I am also going to my first vaulting class this week in over a year. Suffice it to say, I should be well on my way to spending the weekend in bed. But now I am curious to know, in addition to horses and fabric, on what else one might do gymnastics. This exploration may require an entirely new blog...

But maybe this overindulgence in recreational activity will take care of the itch, and I can go back to pumpkin spice lattes and English muffins with raspberry, ginger and red chile jam. If you have not tasted Heidi's raspberry, ginger and red chile jam, consider yourself deprived. Thanks to cousin D for my introduction this past summer. I bought three jars at the grower's market last weekend.

What I should be thinking about is finishing up my nearly finished book proposal and getting a query letter in the mail, or email in this case. I've decided to approach an agent in Massachusetts, where coincidentally, Boo alerted me this week, a man has recently had arm transplants. That's right, somebody's generously donated arms were surgically attached to his stubs. Talk about a fingerprinting nightmare.

I would like to ponder this phenomenon at length, but between horse dancing and fabric gymnastics, I simply have no time for transplanted appendages.


Friday, October 14

as the world turns, slowly

It was March, and the small town in Pennsylvania was gray and cold. The clinic was back a country road in the forest with a small guest house for half in, half out patients. I shared a bedroom with my mother, who came along for moral and gastronomic support.

Dr. N. was not much older than me. He sat behind a huge wooden desk in an office he'd inherited from his predecessor, the founder of the clinic. It seemed like the sort of office one might be called into to see the headmaster of an old money boarding school. I was called in because I was failing the school of hard knocks.

My tests confirmed the prognosis. Dr. N. explained that my body was suffering the effects of debilitating stress. Stress activates the fight or flight response, he said, which is essential to survival--it makes the zebra run from a lion--but it's meant to be short-lived because your body can only produce so much adrenaline. My body had gotten stuck in fight or flight. There was a lion around every corner and my adrenal glands were doing overtime.

I hadn't burn out yet, but I was well on my way to exhaustion. Healing would be long and slow, Dr. N. said, and my condition would require continuous stress management. I would always have to be careful not to overdue it. My life would be limited. In a word: handicapped.

Olympic Arches, Athens
Life slowed to a sloth pace. In the morning, I went to the clinic for various treatments aimed at shutting off my internal 'on' switch. In the afternoon, I looked out over a dreary meadow of leafless trees. This about sums it up, I thought. 

The only thing that made life tolerable at the clinic was Christopher. He hailed from the Bahamas, but when he told me he was 'Bahamian' it sounded like 'bohemian,' which left me wondering why someone would state their personal preference for eccentricity and the arts so matter-of-factly. We were nearly the same age and inevitably became institutional allies. During the day, we exchanged therapy notes, and at night, we watched Sex and the City on the guest house television. We talked about the frustration of being young and sick. We joked about making a reality television show called The Real World of Chronic Fatigue, or soap opera titled, As the World Turns, Slowly.

"Don't miss next week's episode of Real World CFS, when the housemates try to walk up stairs for a nap..."

The ratings didn't look good. Who would want to vicariously live what seemed to me no existence at all? But I wasn't alone. Christopher kept my spirits from plummeting; he kept me sane.

One day I met with a therapist at the clinic in a small semi-lit room. “Tell me about you,” he said under knitted black brows, “what do you think is going on here?” 

What's going on here is that you are some kind of quack if you think you're going to unearth some hidden childhood trauma that will be the key to all my ailments, I thought.

We talked about my childhood. Immediately, he jumped on the arm. "Did other kids make fun of you?"

“No,” I said, “other kids always respected me. I always had good self esteem.” Ha! I thought, now I have him.

But he asked again about my arm, how did it affect who I was. And that’s when it came out: “Well, I guess I’ve always felt like I had to prove myself.”

He said, “Hmm,” and nodded, and typed something into his computer. “Because of your arm?”

My brain began to open up to the possibilities. Was he right? Was this all about my arm? Could that be possible?

“Yeah,” I said, “I guess I have always felt that I had to prove I was more than someone with a disability. I always just wanted to be normal, so I worked really hard at it.”

He looked pleased with himself. Then he burnt me a CD that sounded like nothing and told me I was supposed to listen to it three times a day after repeating a custom designed mantra to cure myself of negative thought patterns.

That night, laying on the floor alone in my room, I said the mantra and I listened to the CD. I wondered if it was working. Then I started to cry. Then I cried harder. Soon I was sobbing uncontrollably. In a moment, I realized all that my driven self had forced my body through––perfect grades, college, working two jobs without a day off, being there for everyone who needed me and some that probably didn’t—-the scenes pounded in one after the other like Jersey shore waves. I heard my body crying, “Help, please help me, I’m not well, I need rest!” I saw my child self, perfect as she was, and I wanted to take that innocent, helpless girl in my arms and protect her from what was to come.

“I’m sorry, I’m so sorry,” I gulped. Something had shifted.

To be continued...

Thursday, October 13

back to the start

Three months after I returned from Athens, I was living back at home with my parents. I was limping along, working half-time, but I'd completely lost interest. I felt like a monkey, set in front of a computer, expected to perform like a cog for the greater good. What was so great about doing good, after all? I had a niggling feeling that it was exactly my passion for good work that had gotten me sick. It was becoming a haunting pattern...

I went to London for a semester in my senior year at college. The university was located in posh Kensington, around the corner from the Royal Albert Hall. The first time I walked down High Street, I was overwhelmed––the people, noise and smells crowded my senses. I lived in a dormitory with an extraordinarily good-looking east Indian RA, and a roommate who didn’t mind being naked. There was a pub at both ends of the street and plenty of partying in between. I relished the diverse student population and made friends quickly. There were endless things to do, day or night. The city grew on me, became routine.

I started an internship with a film company. I was the 'script girl' which meant I had to make copies of all new scripts that came into the office, but I also got to read them. I learned about words like 'acquisitions' and 'distribution,' and how to balance five Starbucks coffees on one hand. But mostly, I tried to lay low because there was more drama in the office than anything they put on the big screen.

Just a couple weeks into my stay, I started feeling sick. I thought I might have the flu, but I couldn't shake a nagging 'fever' even after days of illness. On a weekend trip to the Welsh mountains for pony trekking, I was popping pain killers just to function. A month into my job, I started staying home sick from work. I went to the school nurse, whose Mary Poppins always-look-on-the-bright-side attitude combined with cough drops didn’t do a thing to make me feel better. My school adviser thought I had a cold and said, “You really ought to wear a hat.”

So I bought a hat that looked like a dead black cat wrapped around my head. I figured since I bought it in London, it must be fashionable. I drug myself around the city to see doctors who failed to see the gravity of the situation. They gave me antibiotics and sent me home, but the mysterious fever persisted. One doctor wasn’t sure what was wrong with me, but he was convinced that Americans didn’t know how to speak proper English and felt compelled to lecture me on that point.

I would stay in my dorm room for days reading Mansfield Park, known for being Austen's most complex and possibly worst novel. But it became my best friend as I lay in my twin bed by the radiator, the duvet cover pulled up, listening to carefree college students talking up and down the hall. I can still see all my vitamins sitting next to various antibiotics on my desk. Once in a while I would creep down the hall and a few flights of stairs to call my mom on the pay phone. I was an ocean away from anything familiar, suffering from an unnamed malady, wondering what to do. I should have gone home much sooner, but I waited until December.

Now, three years later, I was there again. I was weak and tired, but the constant burning agitation that hummed through my body made it impossible to rest. And when I didn't feel desperate, I felt nothing at all. I couldn't even cry. I couldn’t laugh either, and that was worse. I watched The Daily Show, a one time favorite, thinking how Jon Stewart's news stories were hardly well-researched, lacking in depth, and never offered enough information to satisfy. The humor became ludicrous. I was alone, without comedy, in a world where everything seemed much much too serious. I sat in front of the television screen, staring blankly ahead at what I imagined to be the rest of my life.

It was nearly Christmas when my mom found a doctor on the east coast who had an answer. On the phone he said, "I have good news and bad. There is no cure for what you have, but you can get much better."

I felt relief because someone believed I was sick. It wasn't 'just in my head'--there was a name for my suffering. Dr. N. specialized in something called Chronic Fatigue Syndrome or more technically, Myalgic Encephalomyelitis, which no one can pronounce. But what little hope I'd kept alive ran out with the words 'no cure' echoing off an impenetrable barricade to the future. I'd been depressed, but now I felt what makes a person get up in the morning literally leave my body. I sat outside on the front door stoop, covered in late afternoon sun, trying to pray. But I had nothing to say. I was physically bereft of joy. At dinner, I looked at my parents and said, "I don't want to live anymore."

But I wasn't dying. I was gagging on licorice powder and coconut milk first thing in the morning, per Dr. N.'s instructions. I watched episodes of Clean Sweep, where professional organizers come in to someone's home and sort through years of piled up possessions, getting rid of the junk, clearing the way for a fresh start. I wanted a fresh start. After a month, I decided to admit myself to Dr. N's clinic.

To be continued in a bonus Friday post...

Thursday, October 6

handicap #3...or, what the @#%$!?

When I tell people that my little arm is the least of my handicaps, I mean it. But I think it's hard for them to believe. That's why, for the most part, I avoid talking about my greatest handicap––It's too complicated for me to grasp, much less ask anyone else to understand.
So, if for the rest of this post, you feel like you've disappeared into an uncomfortable dreamlike vortex of surrealism, I understand. And because this stuff is still uncomfortable for me to relay, and because my head feels like a muggy jungle today, I'll let you have a peek at an essay for the book...

Danielle is tall and thin with thick curly hair. She’s an artist and she paints detailed and colorful oil paintings that she then reprints on greeting cards; and I believe with her that one day she will have her own company. I hope it’s called Greetings From Dani Mae. But right now Dani can barely leave her house. She spends most of her time in bed, trying to muster enough strength to make a decision or call a friend on the phone. And she doesn’t have that many friends anymore. She has spent most of her late twenties struggling with debilitating pain and fatigue and trying to figure out what to do that might start to make her better. Sometimes after I get off the phone with her, I ask God, “Really? How much longer can she suffer like this? God, please.” This is how I pray when I have no idea what else to do. “She’s only in her twenties,” I say, certain that God must understand the entitlement of youth.

I was twenty-five before I fully faced my limitations. I was recently graduated from college and working at a radio station. The very same station where I met Joey. I was copyediting, living with a roommate in the first apartment I paid for myself, making friends, and going out on Friday nights. I was feeling good about life, full of expectation, walking through doors of opportunity as they opened up one after another.

Then I opened a door and walked off the edge of a cliff. I got the completely unexpected opportunity to go to Greece to cover the Paralympics as a broadcast journalist. I spent three weeks in Athens, hitting the streets every day for interviews that would be broadcast on local radio stations around the world.

At first, I was on an adrenaline high, then I started feeling really tired, doping up on caffeine and sugar to keep going. One day out on assignment, I got really dizzy. I thought I might pass out and considered calling a colleague just in case, but I was about to interview a gold-medal winning tandem cycling team, and I was determined not to miss the opportunity. I didn’t pass out, but a day or so later I got stomach cramps so badly, I returned to the base at mid-day and crawled into bed.

Over the next and final week there, I knew something was wrong. I was exhausted as soon as I woke up in the morning. I felt dehydrated. I felt nauseous. I felt sick. Flying back to the States was nothing short of a nightmare. From Athens to London to Baltimore to Albuquerque––it was all an agonizing haze. I could barely carry my worn, torn body through the airports. I curled up on the floor of the plane, only vaguely aware of flight attendants coming and going down the isle.

At home, nothing improved. I went back to my regular job, but something wasn’t working. At first, I thought it was jet lag, then a week became two weeks, then three. It got worse. My whole body felt consumed by a constant feverish haze. My parents took me to urgent care and I came home with antibiotics. My primary physician was kind and open-minded, but she had no idea what was going on. She said, “Hmm,” and wrote things down on her clipboard. Then she suggested we do a pap smear since I was there already and overdue. Well, I figured, it couldn’t get much worse.

I went to see an endocrinologist who said most of her clients were women looking to get rid of facial hair. I wanted to cry. I did cry. I was constantly under a heavy cloud of fatigue, nausea, and worst of all, the unrelenting burning feverish feeling. It became my constant companion as I went to doctor after doctor, each taking my temperature at normal. I was treated for dehydration, then a kidney infection, and finally my primary physician sent me home with a starter pack of anti-depressants after I started crying in her office.

The constant burning felt like an internal furnace that wouldn’t turn off. It was intolerable. It was life-sucking. I could see the real world--my living room, smiles on faces, grassy yards--but I felt very far from feeling it. Yet, sudden sounds, like a car door closing, made me jump, my heart pounding. Sometimes I saw things right in front of me, but still wondered if they were real or if I was hallucinating. I was terrified all the time, unable to relax. I was exhausted, but I couldn't sleep.

One afternoon, alone in my apartment, I crumpled onto the floor in the hallway, pleading with God, “You promised you wouldn’t give me more than I can bear,” I said, “You promised! You promised! I can’t do this anymore, I can’t do this, please...”

Every weekend, I went home to my parents’ house and lay on the couch in a swoon. Every Sunday evening I picked myself up and drove back to my apartment, heavy with despair. I felt trapped and alone. My head was constantly in an inexplicable fog. I didn’t understand what was wrong with me or how to get better, and I was angry. Going to Greece was one of the most amazing things I had ever done...and now this. Something I did brought me to where I was now, I felt sure. What had I done to deserve this?

To be continued...