Imaginary Authority

July 27, 2007 at 4:00 pm (Uncategorized)

Our house is becoming crowded. There’s me and my husband, Jay, our three-and-a-half-year old son, Andrew, our extremely small but extremely loud tabby cat, Kate, and now a whole passel of Andrew’s friends from the Hundred Acre Woods. Neither Jay nor I can see his new buddies (and Kate, for once, is mum on the topic), but Andrew is almost constantly busy with Winnie the Pooh, Tigger, Roo, Piglet, and other characters from the A. A. Milne stories. We’ve even had an occasional Heffalump pass by.

When I was a little girl, my imaginary friend was named Charlie. I don’t remember much about him, besides trying to blame him for any wrongdoing I committed. I’m not sure why Andrew has identified so thoroughly with the Pooh characters, but they have completely captivated him. We’ve read him a few of the Disney versions of the Milne classic. I like the original stories and artwork better, but the Disney books have more pictures and are pitched at the right level. Andrew has seen one Pooh movie, and has a couple of stuffed animals – a Piglet and a Tigger – that he inherited from older friends. But, starting about a month ago, the stories have come to life for him – and in him. Maybe, as an only child, he likes the idea of the communal chaos of Pooh Corner. After all, no one’s alone in those stories. Even Rabbit, who just wants peace and quiet in his carrot garden, gets perpetually knocked off his feet by bouncy Tigger. Maybe Andrew likes the wry touch that survived even the Disneyification of the stories, or perhaps his attraction is nothing deeper than finding the animals cute. Whatever the reason, Andrew is frequently engaged with his troupe of invisible friends.

“Today is Piglet’s birthday,” Andrew announced yesterday morning. “And all my friends are coming for his party.” When I asked him how old Piglet was, Andrew said, “Three, just like me, and when I’m four, Piglet will be too.” As a special treat, we baked pumpkin muffins for breakfast for the party, but Andrew whispered to me, “We must call them cupcakes not muffins so that Piglet is not disappointed for his birthday.” We lit a candle in one of the muffins—er, cupcakes—and sang “Happy Birthday.” Andrew had to help Piglet blow out the candle, though. Thank goodness he did so before Tigger arrived and knocked things around in a bouncing episode.

I have no qualms about Andrew having imaginary friends. All the child-rearing experts concur that special, pretend friends are a healthy developmental phase. I know that his life is filled with real friends and real adventures, so when he starts chatting to Eeyore about thistle, I don’t worry that he’s lonely or socially stunted. If he’s still talking with the Pooh gang in high school, I might get concerned, but, for now, I like witnessing my son’s imagination and creativity at work. The other evening, he made me a pretend ice cream sundae from his pretend ice cream cart on a pretend New York City street. Given my recent diabetic dietary limitations, I think I enjoyed imagining that ice cream almost as much as Andrew did.

I wonder sometimes if Andrew truly believes in the veracity of his imaginary friends. For a while, I thought he was playing along with a game in his head – that he was aware of the process of crafting a fictional universe. But sometimes, he takes his fakery very seriously. One evening, he collected all the pillows in the house and neatly arranged them into what he pronounced was “a birthday sheet cake” for Tigger. He then went and fetched a blanket and fastidiously covered the pillows with it. He spent a good fifteen minutes smoothing the blanket and tucking it underneath all the pillows. “There. Now Tigger’s cake is frosted.” He arrayed some of his matchbox cars on top of the blanket for cake decorations, and went off to get ready for bed. While Andrew was in the bathroom brushing his teeth, I yanked a couple of pillows out from under the frosting blanket for him to sleep on in his bed. “What have you done?” Andrew wailed, when he saw the damage I had wrought. “You ruined Tigger’s cake. I had it all ready for tomorrow,” he screamed, and then he lay his little head on the heap of mussed blankets and pillows and sobbed and sobbed, as if I had just ripped out Tigger’s heart and stomped on it with glee. I stroked his back and said how sorry I was. Eventually, Andrew’s sobs softened into hiccups and then sleep. His distress was no act. It was pretty clear that no matter what the pile of bedding looked like on the floor to my dull adult’s eyes, for my little boy, it really was a beautiful, decorated birthday cake for a special, if striped and invisible, friend.

Fortunately, most of our encounters with Andrew’s imaginary friends are more light-hearted than the pillow/cake debacle. He brings his buddies from Pooh Corner along on trips and keeps us posted on their thinking and their conversations. When we went camping at Park Lake a while ago, I was lucky enough to get help from both Andrew and Tigger collecting firewood and starting a campfire. Andrew trudged through the forest with me, looking for suitable kindling. He did a good job and carted several heavy arm loads of twigs and branches back to the fire pit. “Tigger lets me start our campfires all by myself,” he said, out of the blue. “So, I think I should start this one.” I delivered an appropriate parental warning about the dangers of starting fires and how I was surprised that Tigger would be so careless. “I expected better of Tigger,” I said. Andrew was quiet for a while, watching me arrange some shreds of paper beneath a criss-cross of kindling and smaller logs. “Tigger says that is not how to build a fire,” he pronounced. I tried not to get too huffy, and made some filler noise, like, “Really?” or “Um.” “Yes, Tigger says, absolutely, that you must put the marshmallows in first,” my son continued. “Well,” I said, “You should tell Tigger that if you put the marshmallows in first, they will all burn up– before you can eat them.” Andrew gave me a dubious look and went off to clear that up with Tigger, who must have agreed with my assessment since we heard no more from the big cat until it was time to sharpen sticks for marshmallow roasting and Andrew let us know that Tigger thought it was a good idea if Andrew was allowed to control the knife.

Since our camping trip, the Pooh characters have weighed in on topics like using sunscreen (not necessary– I suppose the trees of the Hundred Acre Wood must filter out all dangerous UV rays); brushing teeth ( again, not necessary, though you’d think all those honey pots that Pooh consumes would rot his teeth); and helping set the table (not necessary – chores don’t take place in Pooh Land). Although it can get irritating to hear, yet again, “Well, Tigger/Piglet/Pooh says…” when I ask Andrew to do something, I understand his impulse. His imaginary friends invest him with an authority on matters which before, only we, his parents, wielded. His imaginary friends give him knowledge – or, rather, allow him to frame his own knowledge. In other words, they empower him. Because the opinions come from someone as venerable as Pooh or Tigger, Andrew believes that he can now engage with us in the serious stuff of life – fire starting, knife wielding, and teeth rotting. Sure, his imaginary friends are fun to fete with birthday cakes and tea parties, but it’s even better to use them as a pack of peers against Mom and Dad. And when I say “against,” I don’t mean simply in an oppositional context – because many of our, “Well, Tigger says…” conversations are perfectly pleasant. I’m employing the preposition in its directional sense. With Tigger and the gang, he is finding a space in which to exist, to hold opinions from, to speak from, that is his own. It’s exciting to watch Andrew in this new zone of confidence.

Witnessing all this has also given me some ideas. How much better our lives would be as adults if we somehow were able to cling to the camaraderie and authority that Andrew’s imaginary friends provide. Who says we should let go of our Tiggers or Charlies in kindergarten? I, for once, could use a little help with all my interactions with doctors. Yesterday I learned that I do indeed have a stress fracture in my foot. My bones are weakened from so many years on high doses of prednisone. I was sent home in a cumbersome and heavy (but, thankfully, removable) cast. I’ve spent the day resenting my bones for breaking beneath me, resenting this itchy cast/boot contraption, and resenting my doctor for treating me. If only I could have told her, “Well, Tigger says my foot will heal without this boot thing.” Or, when my blood work looks bad, I could calmly and coolly tell her, “I won’t be needing to increase my prednisone dose. Tigger says this will resolve itself.” Or, “Tigger says I don’t need to monitor my blood sugar and change my diet. Tigger says ice cream and cake three meals a day are Tigger-iffic.”

Sadly, rather than solving my medication problems, bringing Tigger to my cause might just get my doctor to add some psychotropic drugs to my daily mix. So, I’ll keep playing the grown-up—with my cast and my glucometer and all the lousy accoutrements my life has picked up lately. It’s not too bad, though, because Andrew and Tigger are taking me out for pretend ice cream later. And Tigger says I can never have either too much ice cream or too much Andrew.

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Air Conditioning

July 24, 2007 at 2:59 pm (Uncategorized)

Last week I got some lousy medical news. I have diabetes. And my sarcoidosis is flaring, despite increased doses of both prednisone and Remicade. It didn’t sink in at first. I felt absolutely numb after meeting with my doctor and having her show me how to use the glucometer to measure my blood sugar and listening to her explain the difference between good carbohydrates and bad carbohydrates and the value of exercise in controlling blood sugar levels. I felt like I was watching myself from above. Or like I was observing someone else’s medical drama. “Oh, this is interesting,” I thought, as I stared down at the scene involving me, my doctor, lancets, squeezing my blood onto what looked like a matchstick, talk of heart problems, and the doctor’s old-fashioned pep talk delivered with requisite eye contact: “Just because things are bad now doesn’t mean they’ll stay bad, Rebecca. We’ve hit a stumbling block, but things very well could improve soon.”

I drove home in the hundred degree heat, lay on my bed while the box fan circulated hot air over me, and didn’t think. About anything. My husband Jay called from a business trip. “Do you need me to come home?” he asked. “I can cancel the meeting and drive back” “I’m fine,” I said. “Really, nothing has changed.” I cooked my three year old son, Andrew, his current favorite meal of baked chicken strips, potato pancakes with applesauce, and slices of raw bell pepper, carrots, and tomatoes. We watched part of Chitty Chitty Bang Bang. And then we went to bed in the basement because our bedrooms were too hot to breathe in, much less sleep.

The numb feeling didn’t leave—after Jay came home, after the heat continued to pummel our small, mountain city, after forest fires thirty miles away made breathing the air like inhaling camp fire smoke, after I got used to pricking my finger before and after every meal. I didn’t feel sad. I didn’t feel upset by the news that I was now a diabetic, along with having sarcoidosis in multiple organs. Whatever sadness I wasn’t experiencing, I made up for in anger and snappishness. Jay, as usual, took the brunt of it. Andrew got the second wave. Everything—except my recent health news—bothered me. The clutter in the kitchen bothered me; the tone of voice Andrew used bothered me; the fact we don’t have air conditioning bothered me (and, I decided, was Jay’s fault); having to get out bed in the morning bothered me.

If it wasn’t for my parents, I think I would still be stuck in this heat-hazed bubble of numbness and anger. Maybe my mom heard something in my voice over the telephone, or maybe she just had the good sense to realize that a person with a chronic pulmonary disease shouldn’t be breathing campfire smoke all day and a person with a chronic inflammatory disease shouldn’t be living in a ninety degree house. She ordered me to a hotel. And then she ordered me to stay there until she and my Dad arrived two days later with a portable air conditioner for our bedroom. They had found the last such unit in the state, drove four hours to our house, and installed it. I sit now in my sixty-six degree bedroom. There are no smoke fumes. I can breathe.

I don’t feel numb anymore. I feel sad and scared. Even though I’ve been residing in chronic town for three years, I have always paradoxically prided myself on being healthy. I used to be super-fit; I used to be an athlete; I used to take care of myself. But in the blessedly cool spaces my parents gave us (first in the hotel and then in my own room), I realized that I’m not healthy right now. I gained a ton of weight on the prednisone, and, along with the extra pounds, I picked up an entitled attitude toward food and eating. Because I had sarcoidosis and had to take such crummy drugs, I figured I could eat all the pasta I wanted and that dessert was my due. I stopped making exercise a priority because my joints hurt all the time. I stopped pushing myself to work out every day because I didn’t feel like it, and, gosh darn it, since I’ve had to do so many other things I don’t feel like—ingest chemotherapy, take medications that balloon me, worry about keeling over from heart failure, have various organs biopsied, and so forth—then I wouldn’t add painful workouts to the list.

With the numbness gone, I have a sense of resolve. I have changed the way I eat. But I still have a long way to go. I am relearning how to eat healthily. I am riding my stationary bike for forty minutes a day. I am compulsively checking my blood sugar. And now that I am paying attention to eating, I am amazed at how much junk I was shoveling into my mouth without even thinking. It’s humbling that I, the former super-star bicycle rider and twenty-mile hiker, am having to learn how to eat and exercise all over again. I feel like I’m practicing walking, or breathing.

I’m not sure my parents know that they brought us much more than an air conditioner. They gave me a space to accept that I have to make changes. They reminded me that I am not alone with my disease—or myself. They provided a room where I can write and think and exercise. They helped me stop being numb in the heat. And ready to try walking again.

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Hiding

July 18, 2007 at 3:49 pm (Uncategorized)

I am sorry for disappearing. It’s been several days since I’ve written, and although I’ve felt a few twinges of guilt for having slipped away, I have mostly been dreading my return to the blog. I wish I could report that my absence has only meant that I’ve been vacationing, or that my days have been filled with editors and agents commissioning fascinating projects, or that I’ve been just too darn busy chasing my adorable three-year-old son around the garden with the hose and making multi-layered mud pies. I wish I could tell you I’ve just been lazy. I wish I could tell you that I started up a side business painting street signs, or weaving hemp, or dusting computer keyboards. Any fictional version feels better than the truth. Where have I been? I have been sick, and I have been depressed. These days, Chronic Town is feeling like no place to call home. On the face of it, not much has changed since my last entry. The roads in Chronic Town have the same potholes, the same blind corners that remain unsigned. Maybe the difference is that I’m tired of the same subdivision of medication, testing, bad news, more medication, more testing, more bad news.

As you’ll recall, after what was declared my “miraculous” initial response to Remicade – the infusion anti-TNF drug that impedes my body’s over-reactive inflammatory immune processes – I’ve been heading south of miraculous. Because my various sarcoidosis markers (liver levels and ACE blood levels) continued to rise, and also because I was experiencing heart palpitations reminiscent of my earliest and worst manifestations of cardiac sarcoidosis, and finally because my joint pain was becoming again more pronounced, my doctors decided to give me a “short” prednisone “burst” (raising my daily dose from 10 mg. to 40 mg.) and then double my Remicade dose. Given that all my various sarcoidosis markers responded to the “burst” of prednisone by worsening, my two-day burst on 40 mg. is now a week long and counting.

In the midst of my sarcoidosis flaring, my blood sugar has taken this opportunity to join the fray. “Enough, already with the prednisone!” it screamed, loud and clear, announcing diabetic levels on Thursday. After staving off Type II diabetes for over three long years of prednisone therapy, I find it ironic and depressing that my body has chosen this moment to become insulin resistant. Luckily, my blood sugar levels improved somewhat on the latest round of testing, so I can temporarily forgo taking new diabetes medications, as long as I vigilantly monitor my blood sugar at home four times a day with a glucometer. It does appear, though, that I might have stress-fractured a bone in my foot. (Prednisone thins bones, and even though I’m fifteen pounds lighter on my Weight Watchers diet, I am still carrying too much weight on my already-taxed skeleton.) I should know later this afternoon if I need to get a cast. I also have another sinus infection, along with a nasty case of thrush in my mouth from prednisone and elevated blood sugar. It feels almost gratuitous to mention that Montana’s one hundred degree weather is wreaking havoc on my already sarcoidosis-wreaked joints. Every joint, knob, and protuberance on my body seems to have swollen to twice its normal size. Moving in the thick, hot air feels like placing a heating pad on a twisted ankle. And did I mention that my massive doses of prednisone make me feel like the world is ending?

My news is bad, but I know it’s not that bad. Things could always be worse. (If I have to have a cast on my leg in this scorching weather, they will be worse.) I know full well that probably over half the people reading this with sarcoidosis are sicker than I am. So, my reluctance to communicate my crummy health report doesn’t stem (wholly) from self-pity. I don’t think my news is too terrible to pronounce. No, I’ve been hiding because – I realized today after enforcing some thinking on myself – I feel like I’ve failed. After all the ups and down of my medical treatment, I wanted to be miraculously cured by Remicade – not just for me and my small family, but for everyone else stuck with a permanent address in Chronic Town. I wanted you far-flung readers to have a bit of good news, maybe a morsel of information to take back to your doctors. (“I’ve heard some good things about this Remicade and I’d like to try it.”) I wanted my flesh-and-blood friends to have good news. They’ve already shared the doom and gloom cycle of my life. I’m tired of them worrying about me or wondering how they could make my life a little easier. Mostly, I want to be well (or at least trending in a better direction) for my family. Jay worries himself sick about me; Andrew can’t believe I leave the house not to see a doctor; my mother thinks I’m dead if she doesn’t talk to me every few days. I am, at my deepest core, a people pleaser. And lately, I have wanted to work my art via stunningly good medical news. I certainly did not plan on having to sigh and deliver the latest round of bad test results and new symptoms. I am the kind of person who can’t turn down a request to contribute to the bake sale or to host a political fundraiser; imagine what it does to my sense of self to do the equivalent of crap on the all the PTA cakes or rob the candidate’s kitty? That’s what it feels like these days to answer honestly the question, “So, how are you doing?…Oh, but I thought you were doing better…I thought there was a new drug…”

My people-pleasing motives aren’t entirely pure, however. Even though I rationally know it not to be true, I nevertheless believe that I am in some way responsible for the downward trend in my health. If only I could try harder, or eat better, or sleep more, or take my pills with more water, or have ridden the stationary bike for longer, or have ridden the stationary bike for shorter. If only. Then I would have continued on my ray-of-sunshine path to perfect health. Somehow, somewhere, someway, this is my fault, I tell myself, before quickly un-telling myself this.

Relapsing. Un-remitting. Getting sicker. These are the narrow paths of Chronic Town I hate the most. Confronting bad news after a brief interlude of hope is more bitter than simply plodding along with constant sorrow. Odd, how a little hope can poison you to living. I wish I had kept my first miraculous Remicade story to myself, because then I wouldn’t have to field questions from myself or others about whether or not I’ve “overdone it” and made myself sick, or whether there’s not something more I can be doing to improve myself.

But today, I’ve come out of the alleys and back onto the main street of Chronic Town because hiding from myself and from everyone else takes too much effort. I’m here. My foot hurts. It’s hotter than hell outside, but this is where I live, so I should venture back into the summer light. I’m sorry to bring bad news, and sorrier for having avoided delivering it. Disappearing never helps anyone in Chronic Town. Especially when it’s time for a bake sale.

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Remembrance of Things Past

July 10, 2007 at 3:40 pm (Uncategorized)

“The body has its own memory,” Barb, the massage healer I see for my chronic neck and joint pain, told me a couple of weeks ago, as her fingers found the sorest spots in my taut neck muscles. She had just noted that it was exactly a year to the day since I was involved in a rollover car accident that left me with a torn triceps muscle and a bad case of whiplash. Although the injuries have consistently nagged at me for the year, the pain had intensified, for no apparent reason, on the anniversary of the wreck. Barb’s theory was that my body was remembering the year-old trauma and expressing it in its own language of pain. “I know it makes no sense,” she said, “but I’ve seen it time and again.” As always, her hands soothed the pain, and I left her office, if not healed, then at least able to turn my head.

Her words stuck with me, though. The body has its own memory. I wasn’t sure exactly what this meant to me, but it resonated enough for me to scribble the phrase on a sheet of paper on my desk. The body has its own memory.

Barb also was the first person to mention “the second brain,” which is an idea getting attention now, especially with the publication of The Second Brain by Dr. Michael Gershon, the chair of the department of anatomy and cell biology at Columbia University. While it may sound like the stuff of science fiction or outright quackery, apparently the enteric nervous system – the so-called second brain – actually exists. According to the New York Times, “The role of the enteric nervous system is to manage every aspect of digestion, from the esophagus to the stomach, small intestine and colon. The second brain, or the little brain accomplishes all that with the same tools as the big brain, a sophisticated nearly self-contained network of neural circuitry, neurotransmitters and proteins.” Scientists are beginning to see connections between the first brain (the one that sits in your skull) and your second brain (the one which resides in your gut). Depression disorders, Parkinson’s disease, and ulcers, manifest themselves at both brain levels – head and gut. And neurotransmitters like serotonin don’t simply impact your head; they also profoundly influence your digestive system.

Just as with the concept of my body remembering, I found the notion of a second brain in my gut oddly compelling and intriguing. But, again, I wasn’t sure why. I scratched “second brain” and “stomach” on the same sheet of paper as my elliptical note to myself about my body having its own memory. Then, I buried the chicken-scratched paper under the avalanche of papers, DVDs, newspaper clippings, letters to answer, and old New Yorkers that conceal my desk. And I forgot about both ideas.

On Friday, when it was forecast to reach 106 degrees in our mountain town, where few buildings – and not our home, are air-conditioned – I took Andrew and Anna (a delightful eight-year old girl who half-plays with Andrew and half-babysits him) to a local lake to get away from the heat shimmering off the pavement. Once at the lake, I hurried back and forth between the car and the beach, carrying the seventy-five pounds of crap that somehow become requisite gear once you reproduce – you know, the life jacket and the extra life jacket; the bucket of digging toys; the two changes of clothes; the towels; the four different kinds of sunblock (the face stick, the body lotion, the SPF 50 chapstick and the almost-empty bottle of lotion that isn’t enough to cover one small body, but that you somehow never manage to finish, and thus must tote along to every possibly sunny destination); the sun hat and the other hat, in case the sun hat blows away; the books, in case the kids got sick of swimming and digging; the cooler full of enough food to sustain a party of three for a week (and from which the kids still can’t ever find anything quite satisfying enough to snack on at the beach); the hot pink inflatable float; Andrew’s sunglasses that remain on his face for only about 8.3 seconds; the 10 foot wide shade canopy that take fifty minutes to erect and is purely impossible to deconstruct without a movable crane; the collapsible camping chairs, including a small Andrew-sized one that is decorated like an elephant and that he refuses to sit in unless another child expresses interest in it, whereupon you cannot coax his cute little ass from it; and my magazine, just in case I had four or five seconds to take my eyes away from the children.

In between carting all of this by myself and keeping an eye on the kids, who immediately waded out to drowning level in the lake, despite my bellowing, “Andrew! Anna! Wait just three minutes. Please?”, despite all of this, which left me red-faced, sweating, and gasping, I noticed a woman gliding into the parking lot on her elaborate racing bicycle. She was dressed in a tight lycra jersey embossed with her various sponsors and black bike shorts that perfectly displayed her tanned, muscled legs. She whooshed past me, as I stumbled with the cooler, and dismounted from her bike in one, easy motion. When she took off her helmet, I could see its strap lines tanned onto her face.

Merely witnessing this cyclist – this powerful and lovely female athlete – who moved from her bike to the curb to gulp down water before putting the bike back on her car’s roof rack and turning to the rest of her day, after what was undoubtably a long ride on the surrounding roads that are popular with the racing set, just a sideways glance at her, brought Barb’s comment alive. The body has a memory of its own. Yes, it does. One look at her, and it was like my legs and my heart remembered the feeling of speed as the road fell away beneath my bike tires. You see, I used to be a hot shot bike racer too. One look at her, and my torso and neck remembered being strong, slim, and tanned in curious patterns from cycling gear. One look at her, and my hair remembered flying in the wind, my feet remembered the itch of wanting to win a race. One look at her, and my body remembered how it used to be, before years of prednisone, illness, chemotherapy, and stuffing my mouth full of food in a poor attempt to feel better about prednisone and illness. The funny thing was that this realization was entirely physical; I didn’t register the experience of nostalgia and regret with my brain or my emotions until I was back at the picnic table, wrestling Andrew to the sand to lather him in sunscreen. Then I felt like crying, but only after my body had held this knowledge on its own for several minutes.

It made me wonder about my brain – this proud collection of neurons and tissue that claims it rules the roost. There is something almost overweening about my brain, up there, far above the organs it directs. All the emoting and thinking and worrying I do hasn’t really accomplished much. When I first was diagnosed with sarcoidosis, months before sophisticated imaging tests revealed the extent of the disease in my heart and other organs, I felt a slow, steady sinking in my gut. My body knew what was going on; my brain spent weeks pretending the symptoms I was experiencing didn’t exist. While my second brain, housed as it is right next door to my sarcoidosis-riddled liver and just downstairs from my sarcoidosis-riddled heart, lurched with an excess of butterflies and warning signs, my first brain had me telling my gut, “Oh that? That two minute period of bizarre palpitations that almost made you pass out? That was nothing! Nothing! But let’s stay up all night and worry about it anyway.”

There is a wisdom to our bodies and in our bodies that we spend the greater part of our days ignoring. Watching my three-year old son, Andrew, is an exercise in how far we have moved from the knowledge of our second brain, and the knowledge of our skin, our hearts, our kidneys, our eyes, and how far into our grey, shriveled brains we have crawled. Andrew likes the sunshine on his skin. He likes a decent meal and twelve hours of sleep. He eats when he’s hungry, and stops when he’s full (unless, of course, marshmallows or ice cream are involved – then all bets are off).

Andrew inhabits his body, while I, having pumped mine full of various chemicals in an effort to stave off this disease, can no longer recognize the basic cues of hunger, fatigue, and desire. I can’t even tell you when I need to eat something. The prednisone has turned me into the human equivalent of a termite, constantly wanting to gnaw all day, but I don’t need the food I crave. I’m fat; my blood sugar is borderline diabetes levels, and my blood pressure is creeping up. I need no food, yet I am hungry. The food never satisfies, but only makes the termite part of me want to gnaw more. This same type of confusion reigns with my energy level. The sarcoidosis and the various medications the doctors have tossed at my disease like drunkenly-aimed darts, have left me perpetually tired, constantly wanting to lie down, and nevertheless continually berating myself for my fatigue. My body remembers when it knew hunger and tiredness, when it could be sated or rested, and it mourns the passing of this in a language its own. I don’t think my enteric nervous system (or my central nervous system, for that matter) knows up from down anymore. I am left only with the remembrance of things. Seeing a cyclist in a parking lot is my personal madeleine, a trigger leading me back into my physical past.

I’ve been sick lately. My first brain has dedicated its efforts to convincing myself that I’ve just been depressed. “Get going! Lazy! Get writing! Stop feeling sorry for yourself.” But my second brain, my gut instinct, told me that something wasn’t right with my chronic fatigue escalating to the point that simply being out of bed made me feel like my bones were being pulverized. “Get going! You’re in remission! You’re on expensive drugs!” my withered interior head shrieked, but at least I had the sense to ignore it and go to the doctor. My gut instinct proved correct. All of my sarcoidosis markers are back to their worst levels – the doctor’s theory was that my 5 mg. drop in prednisone, combined with too long a gap between my first and second Remicade treatments because of a serious burn, gave the disease time to dig trenches and build up its fortifications. Finally, yesterday, after having a heart episode that left me reeling and feeling like I was about to hit the decks, the doctors opted for a “prednisone surge,” followed by an intense dose of Remicade. The end result is that I am back on 40 mg. of prednisone a day, tied for the highest dose I’ve ever had to take. On Thursday, they will bombard me with double my typical dose of Remicade, and then wait and see what happens. It feels cruelly ironic that my body’s knowledge of its own sickness leads to me being pumped full of more drugs that will in turn confuse those very instincts that preserve me. Welcome to the wonderful world of warfare masquerading as medicine.

A couple of days after my Proustian moment in the lake’s parking lot, my body remembered once again. This time, though, the experience left me teary with happiness instead of grief. Jay and I borrowed Anna’s parents’ kayaks and went camping for the weekend at another, more distant lake. Kayaking is the second athletic love of my life. I spent my youth racing my bike as fast as I could. Riding 100 miles a day was no big deal, and I could sprint around a pace car that exceeded 30 miles and hour. I was long-legged, lean, and wanted to keep up with the wind. Eventually, I started to slow down a little. Kayaking let me to do this, but with integrity. When we spent nearly two years in Palau, a small Pacific island nation located between Guam and the Philippines, Jay and I began kayaking the warm, translucent waters that surrounded us. We built up to a multi-day paddling trip, where we were totally alone – not counting the sharks, rays, sea turtles, giant clams, coral, and the tropical fish we floated with. We would paddle until we were tired, pitch our tents on one of the hundreds of uninhabited islands that comprise most of Palau’s landmass, and watch the stars emerge in total, oceanic night. It was one of the best, most profound experiences of my life. Remembering those days even now gives me strength when the prednisone mood swings strike.

I’ve been reluctant to set foot in a kayak after the wonders of Palau. Lake water is cold; my body no longer feels like its own; I’ve even half-wondered if I would embarrassingly sink a kayak. Plus, I’m not strong anymore. I’m not good anymore. The excuses I’ve constructed for myself are almost as deep as the water I’ve avoided. So for three years, I’ve sat on shore while Jay has taken Andrew on his lap and paddled around various Montana lakes and rivers. This weekend, though, something turned inside me. Maybe it was the woman on the bike. Maybe it was my skin and hair and arms remembering all on their own and demanding they get a say in the matter. Maybe it was my enteric nervous system acting out. Who knows? Whatever it was that propelled me out into the water, with Andrew perched on my lap, was magnificent. I’m not strong; I am lumpy, but I didn’t sink the boat. The paddle sliced through the water and the reflected sunlight. We saw the flash of silver fish below the surface. We glided. The paddle felt like a familiar hand in my own. My arms remembered. My back remembered. And for a moment, it felt like the whole world was singing with me, remembering and looking forward.

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When Juniper Attacks

July 2, 2007 at 2:24 pm (Uncategorized)

My newfound gardening hobby is beginning to border on an obsession. I can’t walk outside without yanking weeds. And then once I start weeding, I can’t stop. “Daaad. Mom’s still weeding,” my three-year old son, Andrew will bellow, a few minutes after I’ve promised I’m on my way inside from the car.

I wish the level of fussing and the numbers of bags I’ve filled with various species of thistles, dandelions, and other fuzzy-topped weeds corresponded to a better-looking yard. But after three years of active neglect (since we bought the house in late 2004, there’s been not more than two total hours of yard work done before this spring), my summer flurry of pulling and planting hasn’t really made a dent. Most of our property is seedy-looking at best, and down right derelict in other places.

Yesterday, on a hot and sunny Sunday, I decided to tackle the front of the property while Jay and Andrew were off on errands. As I’ve mentioned in an earlier essay on this blog, our yard isn’t of the standard grass and shrub variety. The previous owners painstakingly planted perennials that are deer-resistant and that require little, if any, water. We have lovely potentilla shrubs lining one side of our driveway. Sage bushes with purple flowers, flax, and bright orange poppies faithfully bloom each year. The cacti shoot up extravagant flowers. But, in the front of our house, weeds have invaded the creeping juniper ground cover. In large patches, the juniper looks almost as crummy as the waving weeds. Much of it is dried, brown, and crumbling. In the brownest spots, enough thistles to feed a herd of Eeyores have gained a foothold.

I should note that it wasn’t until our next-door neighbor stopped by with sweet pea pods picked fresh from his lush and orderly garden that I learned that the horizontal pine tree-looking stuff was juniper. My knowledge of things plant-related is close to my expertise in, say, astrophysics or vascular surgery – zip. I have no idea what plants I need to water, or when. I’m used to the animal and child style of maintenance: they let you know when they’re hungry or thirsty, instead of quietly waving in the wind before dropping dead. Most of the time, I can’t even determine what is a desirable plant and what is a noxious weed. Last week, I ripped out a bed of lavender, leaving behind knapweed. In my defense, the lavender hadn’t bloomed and looked a little hung-over, while the knapweed had blossomed into stunning purple flowers. It wasn’t like the knapweed had a tag proclaiming, “I am a noxious weed, the bane of native plants. Please kill me.” The thing looked pretty. Now, after mishaps like that, I’m learning to spy on other people’s gardens and ask them basic and idiotic questions, such as, “How long should I leave the hose on this plant?” My poor next door neighbor is the recipient of most of my stupid queries. “Am I insane?” I asked Neal, when he delivered the pea pods and the classification of the shrub in my front yard. I was red-faced and panting from the effort of trying to remove the dead and sickly parts of the juniper. “Well, that depends on what you’re talking about,” he answered without missing a beat. “But, if you’re thinking of pulling out that juniper, I’d leave it.”

I had no intention of pulling out the juniper. I simply wanted to contain it a little – and also remove the parts that looked blighted. Plus, the juniper was taking over everything. The previous owners had constructed all these arty formations of large, jagged rocks and bleached driftwood in the front yard that the juniper was devouring. The juniper was even colonizing the mulch and rocks they had dumped down. And, like I said, it wasn’t looking too snazzy. So, I seized a dead-looking piece of juniper – one little branch – and pulled. And pulled. And pulled. As I yanked, I didn’t uproot this one, single branch. No, I unearthed forty other subterranean branches. Now it looked worse with all these dead, exposed branches, so I pulled again. And pulled. And pulled. Still, nothing came out of the ground, but I did expose another forty underground roots. So, I began cutting, thinking that I could trim away all the decayed matter that I had pulled to the surface. But it was like I had uncovered a giant squid in the front yard. Everywhere I turned a tentacle-like root was up, out of the ground.

As in other global battles between two fierce opponents, the situation escalated quickly. I’m not sure how it became so dramatic. One moment, I had a cogent plan for making my front yard look better; the next, I was locked in mortal combat with a root system that I swear was armor-plated and entrenched about thirty feet deep. I hacked, and hacked, and swore, and hacked some more. All I did was expose deeper and larger juniper roots. My arms were scratched. I was down on my knees, flailing with the shears, and then standing, and pulling and grunting with all my might. The children next door had been skateboarding down the ramp of a flat-bed trailer parked in front of their house. After I was out there for a while, they gave up all pretense of skateboarding and simply stared at me. This free show had to be more entertaining. I was wearing ripped, slightly-too-tight pants, and a bright orange t-shirt. To keep the sun off my face, I donned my canvas fishing hat that says “Vietnam” in bright-red letters on the front that I bought on vacation in Hanoi a few years ago. The hat did little to keep my temperature down; within a few minutes, I was soaked with sweat and my face matched my obnoxious t-shirt.

“Wow,” Jay said, without any affect, when he and Andrew returned from their errands. “You’ve been busy. And you look awfully hot.” Because I am stubborn, and because I wanted some kind of resolution with the juniper, I refused to come inside. Jay came back out a little while later. “Uhm, sweetie,” he began. “I don’t really know how to say this, but, uhm, you’re being an idiot. Your face is red, you’re panting, and you don’t look so good.” It was almost like his words allowed something besides the network of juniper roots to enter my consciousness. I was tired. My heart was rattling precipitously in my chest. I was standing in full sun in ninety degree weather. I was soaked with sweat. And I have a heart condition. So, I went inside. “Holy mackerel, Mommy,” Andrew crowed. “Your face is as red as many beets.”

Maybe the juniper thought it had carried the day, but I was just biding my time until the sun slipped lower in the sky and the air cooled. After dinner, I went back to the yard with my black gardening garbage bags, my trusty clippers, and a whole lot of anger. At least the urchins next door had gone inside to gape at the television instead of me. My second campaign was remarkably similar to the first, with lots of pulling, swearing, ripping up my hands, and scratching my arms.

As it grew darker, I abandoned the juniper (turns out, according to some research I did last night, a truck is the recommended juniper extraction tool – as in hitch your truck to the root and gun it.) and moved on to the thistles. I pulled out forty-four last night. By the time I got to them, the juniper had so infuriated me that I didn’t even bother to dig the thistles up. I just grabbed them with my canvas gloves and yanked. Of course, they pricked my hands, but I was in a mental zone where all I cared about was ripping thistles out of the ground and smashing them into the garbage bag. The thistles oozed a milky sap; I folded them in half and stuffed them down into the bag of dead leaves, sawed-off hunks of juniper, and other thistles. And all the while, I cursed to myself. I kept my voice low, and Andrew was inside. Nevertheless, I wasn’t saying nice things to the thistles and the juniper. But it felt good to rip up these odious weeds and match their barbs with my words. It felt good to hack at the juniper, even though I was making our poor yard look worse. It was like I was a cartoon character and I could feel the steam of rage and frustration blowing out my ears. In the midst of my yanking and smashing and muttered obscenities, a woman walking her dog past the house stopped and watched (and listened) to me. I didn’t really notice her until she said, “I think you’ll need to speak up if you want the thistles to hear you.” Of course I apologized for my profanity on the mild summer evening, but she just laughed and said she took out her frustration on weeds, too. I couldn’t help but thinking that not only did we have the absolute worst and weediest yard on the street, but that now, several of the day’s witnesses would attest that I was the neighborhood loon. All my gardening had done was rile up the juniper into an ugly tangle of roots and make me act strangely. “There’s the red-faced lady,” the kids will whisper. “Stay out of her way, or she’ll call you a mother-fucking thistle and stuff you in her trash bag.”

I have been forcing myself to stay indoors today. The temperature is supposed to rise over ninety degrees, and I’m sore from doing battle with the juniper. I am also frankly ashamed at how angry I got in the yard. Jay, who (in a delightful gender role reversal) had spent the day doing laundry, hanging it on the line, going grocery shopping and making pizza, was more sanguine in his assessment of my juniper attack. “It makes sense you were pissed,” he said, as we snuggled in bed last night. “There’s a lot going on in your life, and you don’t have many outlets for your anger.” Then he told me that he thought it was good I was out there, cussing at the ground cover – as long as I stayed away from peak sun.

He’s right. I do have a lot going on. My second Remicade infusion did little to improve my health. I’ve spent the last few weeks feeling exhausted, sore, and sick – and that’s even when I stay out of the garden. I had a few good days of work, and a few days of keeping up with the work of my daily life – grocery shopping, playing with my son, sweeping the kitchen floor, and making dinner for my family – and then the weeds of this illness popped up again. Now I have the familiar sensation of a low-grade flu – what I call my everyday sarcoidosis symptoms. It makes me mad. It makes me want to rip the disease out of me. But I can’t. So I guess I’ll settle for the thistles.

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