Feed Me, Seymour!

July 31, 2006 at 9:25 am (Uncategorized)

A great miracle occurred yesterday – my husband did yard work. For more than five minutes. Without grumbling. As a result of his efforts, we can now walk from our house to our detached garage without being attacked by the five foot tall noxious weed I’d taken to calling Gladys the Destroyer.

I know what you’re thinking. You are wondering if I am one of those people who have fluffy, green lawns manicured to the perfect one-inch length, and yet who still thinks the grass looks crappy and that my husband should be out there toiling under the sun, edging the grass with cuticle scissors.

That’s not me. We have lived in our present home for almost two years, and not once have we trimmed a weed or a blade of grass nor have we sprinkled a drop of water in our yard. There was actually no need to at first. Previous owners landscaped the property with indigenous low water plants, so the place looked quite delightful our first spring. Orange poppies sprung up, as did mint and basil in a tiny herb garden. Irises bloomed along the fence; the apple tree unfolded its flowers majestically; lavender exploded. There was rhubarb and some exotic-looking plants with great, drooping flowers in one of the enclosed beds in our large back yard. The prior occupants had even built a wooden walkway that threaded through the plants and the trees. Little birdhouses dangled from the trees. Given their interest in keeping to plant species indigenous to Montana’s semi-arid climate, these green-thumbed folks hadn’t put in grass, which sucks up water like a sponge.

Then nature took its course. The poppies, lavender, rhubarb, and apple blossoms reappeared this spring – along with a whole lot of weeds. Thigh-high weeds sprung up and dried out to look like straw in the once-orderly beds and along the fence lines with our neighbors’ place. Weeds frame the mailbox, and are the centerpiece of our front “lawn.” Kate, our predatory six-pound cat from Palau who looks more like a civet than a domestic animal, culled the bird population. I’ve seen her perched atop each of the feeders and bird houses just daring the next generation to land. To sum up, our property is one of the seediest (no pun intended) in town. I half-expect the police to show up with a complaint from our neighbors that our yard is a hazard.

But, like I said, I’m not a yard person, and neither is Jay. When the sun is shining and the skies are blue, the last thing we want to do is grab the weed whacker and spend a day edging. Let’s go for a hike, or a bike ride, or even stay inside and read a book. Let’s not stand stooped over some choking, smoking equipment. Plus I am convinced that pesticides have played a role in my developing chronic, multi-system sarcoidosis, so I really have no interest in spraying some toxic brew around my house in the name of having a lawn. And then there’s the whole environmental angle: why waste water and gasoline on the two-stroke engines of lawn mowers and weed whackers for something as trivial as a lawn? That’s what parks are for. And by visiting the park, we are taking a stand against the privatization of leisure space that marks this country.

And then we had a kid, and I started to look longingly at the lovely lawns of our friends and neighbors. Look at all the succulent green space! Look at those barefoot children bounding across soft, green grass! If Andrew ventures into our back yard, I fear he will be either attacked by the mother deer who calls our weed patch home or get swallowed up by the thicket of weeds that are taller than he is.

Jay, however, took some convincing. First, he claimed that he had been forced to do countless hours of cruel and backbreaking yard labor when he was a child and was permanently scarred as a result. Since he comes from a family that didn’t require him to ever clean a bathroom, do his own laundry, mop a kitchen floor, or dust (lucky bastard!), I find the whole idea of him toiling under the hot sun a little hard to believe. Then there’s his stubbornness. When Jay gets an idea in his head, nothing will change it. For instance, he believes forks are an unnecessary aspect of the salad-eating experience. Why not just grab a handful of lettuce and enjoy? No matter how much I whine and plead for him to please use a freaking fork at the dinner table, he persists in his caveman-lite eating style. After nearly ten years of marriage, I’ve learned that, at best, I can nudge him in a direction – say, to get him to use a fork to eat his salad in a restaurant or when we’re at a friend’s house. Similarly, the anti-lawn stance was part of Jay’s idea about himself, and there would be no changing it. And to be honest, I wasn’t about to launch a get-your-ass -into-the-yard campaign when he was doing the dishes, a lot of cooking, working full-time, spending most of those earnings on doctors, getting up in the middle of the night with our son, and doing the laundry. I know when it’s time to shut up and count your blessings.

Then Gladys the Destroyer came along. When you went out the back door, Gladys shot prickles at you. Andrew couldn’t use his sandbox anymore, because Gladys had claimed that area. Even Jay and I stopped trying to brave Gladys to take the short route to the garage and just took to going around and opening the main door when we needed to get in. The plant grew exponentially every day. Really, it was like the man-eating plant in Little Shop of Horrors. It was just a matter of time until Gladys devoured Andrew.

So, we borrowed a weed whacker from our friends. Jay insisted on doing yard work yesterday. Since Gladys and her companions had come to resemble sequoias more than weeds, my fearless husband attacked them with a bow saw, not the weed whacker. It was unbelievable. He was out there for something like an hour, and he cleared a path from the house to the garage. Andrew was thrilled to have his sandbox back. Jay was puffed up with pride. And I was pretty convinced my husband was suffering a psychotic break with reality, especially when he told me that he would do twenty minutes of weed whacking a day on the rest of the property. (I had tried to handle the machine myself, but it made my sore arm throb.)

I guess this just goes to show you that there are no limits to love. The image of Jay hacking down weeds for Andrew and me is etched in my memory. He weeded for us! What more can I want from this marriage and this wonderful man? And then I remember that I threatened to go to Home Depot and buy the most expensive weed whacker if he didn’t get out there and clean the place up. Oops. Who knows, maybe if I start talking about buying a new set of silver, he’ll pick up a fork when it’s salad time. Now that would be true love.

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Control Freak

July 29, 2006 at 8:50 pm (Uncategorized)

My friend Amy told me she found it very interesting that I so often make the connection between being chronically ill and being a mother. At first, I wanted to say “that is not what I meant at all, that is not it at all[,]” until I realized that there was some truth to Amy’s observation, and that quoting T.S. Elliot to one of my dearest and truest friends would only convince her that I had indeed gone off the deep end.  You see, I have always envisioned this blog as an attempt to show the parallel paths of motherhood and illness.  After all, both of these life-changing events happened at almost exactly the same time in my life over two years ago.  But as I reflected on Amy’s insight, I saw that pretty often these paths don’t run next to each other.  Rather, they intersect.  And the point where being a mommy and being a patient meet most acutely is in the realm of control – or the lack thereof.

I won’t bore you with a term-paper-esque blow-by-blow of all the ways in which having chronic sarcoidosis and a toddler are akin.  Suffice it to say that both conditions frequently involve me bending my will to that of a force greater and mightier than me.  Take the whole notion of planning my day.  Pre-sarcoidosis and pre-Andrew, I would awaken each morning, stretch luxuriously in my bed, and plot my upcoming day.  Would I start the day with a walk on one of the trails that threaded through the hills behind our house?  Or should I go to the gym?  Perhaps I should head first to my home office and plunk out some words for my latest writing assignment?  Or, if my work life wasn’t too busy, maybe I should make a triple latte, bring it back to bed, crack open a book, and read in bed for a couple of hours?  Decisions, decisions, decisions!

Now, as every other parent in the galaxy can corroborate, mornings post-child are a bit more, shall we say, frantic.  I typically crack open one eye against my will sometime far too early for human beings to have to stir, like, say, 8am (have I mentioned before that I am definitely not a morning person, even on the best of days?), to find Andrew peering at me intently.  He usually quotes a line from one of his favorite books, Go Dog, Go, and tells me, “It is day now, Mommy.  It is time to get up!”  I’d like to report that I spring out of bed and begin a virtuous routine with my son, but I usually just groan and plead with him, “Andrew, let’s please snuggle in bed for a few minutes…please.” Whereupon Andrew will announce either that he has to go poopie or that he has just gone poopie in his underwear.  Thus begineth my day.  From there on out, I pass the hours trying to convince Andrew to play by himself while I unload the dishwasher, check my e-mail, or make more coffee.  More coffee is a central part of the equation.  It is a blessed moment when Andrea, our awesome babysitter, arrives, and I can retreat to another part of the house without a forty-pound shadow.

Once I’ve gotten physical distance from my son, though, it’s not like I return to my pre-Mommy self and undertake an inner stretch and a “what shall I do with myself today?” dialogue.  Usually, my physical condition has already determined what is possible for the day.  First, there is the question of doctors’ visits.  A week rarely goes by when I’m not dutifully showing up at some appointment or other.  Now that I have to go to physical therapy three times a week for my car crash injuries, my medical social calendar is even more packed with fun visits.  Then, even on those rare occasions when my day is free and clear, I probably just won’t feel well.  Really, I’m not trying to bitch and moan, just tell the truth.  Sitting in front of the computer is exhausting; running errands (especially in our globally-warmed temperatures of 100 degrees) enervates me before I leave the house; exercise takes every bit of my being.

I find myself asking not what I want to do each day, but what can I do?  Since I was on the under-motivated side even when I was in perfect health and I actually believe that I am highly allergic to full-time work (especially in an office with recycled air and fluorescent lights), I don’t think it’s the knowledge that I’m not getting a lot of work done that brings me down.   For me, it’s all about the loss of control.  In so many ways, my life feels like it is no longer my own, that I am the amusing pawn of a bright toddler and the not-so-amusing pawn of the not-so-bright medical establishment.

What I am still coming to grips with – and fighting with every fiber of my essence – is the notion that this state of being completely out of control is actually the human condition, and that the way that I felt pre-sarcoidosis and pre-Andrew was the illusion.  This hit me when I was recently talking with a woman who is pregnant for the first time, and she mock-complained about feeling out of control with her body.  I know this feeling well.  No matter how much I lecture myself, motivate myself, or diet, I continue to be hefty because of the prednisone and sick because of the disease – and the prednisone (see above, not-so-bright medical establishment).  But in all seriousness, when are we ever in control of our bodies or our lives?  We start physically degenerating almost the moment after we enter this world, and it’s all downhill from there: slowing metabolisms, cells that mutate and cause cancer, thighs that get lumpy after babies.  And, as every single person on this planet knows, random events change the course of our lives, for good or ill, in a millisecond. Control? I never had it, and I certainly don’t now.

That said, I would like to distinguish between the chaos brought by  my wonderful son and that of my illness.  Andrew turns everything on its head, but, for the most part, I don’t mind too much.  To use an overdone cliché about children, he teaches me what is important.  He has shown me that some of the best moments come when you don’t (because you can’t) plan them and when you least expect them.  He has taught me that I have no limit for loving another being.  I wouldn’t change a thing about him, except, perhaps, for his pathological resistance to sleep.  The sarcoidosis, on the other hand, I would gladly leave behind in a second.  I’m not saying I haven’t learned anything from it, because I have.  But I’d like to take a break from lessons in acceding to my fate and my physical limitations (somewhat) gracefully.  I feel like shaking my fist at the sky and yelling, “Enough, already!  I get it!  I have no freaking control!”  But, the sky never answers back, and before I dwell on it too long, Andrew toddles in and tells me something outrageously funny, and in that instant, I realize that control isn’t all that it is cracked up to be.

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Counting My Blessings

July 26, 2006 at 6:15 pm (Uncategorized)

One of the folks who reads this blog posted a comment after my last entry. Although he claimed not to have any words of wisdom, Paul actually was pretty darn wise when he reminded me to rejoice in the little things I can do. If I expand this thought out a couple of inches, I end up pushing myself to celebrate all the wonderful people and things in my life – great and small.

I’m lucky that I have an astute practioner in the art of appreciating life to serve as an example. My guru is a little taller that three feet and just shy of forty pounds. He’s not so adept at sleeping through the night, wiping his bottom, listening to anything he doesn’t want to hear, or not throwing most of his dinner on the floor. But my son Andrew can definitely rejoice in everything and everyone around him.

Take this morning, for instance, when Andrew and I had to bring our cat Kate to the vet for her vaccinations and to have a raspy cough investigated. Perhaps Kate is such a terrible traveler because we have made her do too much of it. When she was only a year old, we flew her from Palau, where we found and rescued her, to Montana, where we stayed for four days before loading her into a U-Haul with us and driving her to California. Now, whenever she sees her kitty carrier come out of the garage, she first flees and hides, then climbs up my arms while I try to shove her into the cage, and finally, never stops meowing until she is released. In the car, her wails become louder, more panicked, and higher pitched. Driving across town is terribly unpleasant.

Poor Andrew had to sit right next to Kate on our trip to the vet. Rather than get annoyed by her screeching, though, he decided to share some of his enthusiasm with his kitty friend as way of comforting her. “Look, Kate!” he bellowed as we turned onto the main road, “There’s a double logging truck.” Even though the only response he got was meeeeeeeeooooooww, Andrew kept on showing her the exciting world around them. He pointed out to her the train tracks, every PT Cruiser and Cooper Mini we passed, bulldozers, an oxygen truck (our shorthand for a truck delivering oxygen), a cherry picker working on a street light, a paver parked at a construction site, and, when we hit any lull in the action, every pick-up truck he could spy. The delight in his voice was palpable, his enthusiasm for everything motorized was contagious. I could almost hear him thinking, “God. It is so good to be alive and driving among all these trucks.” Kate was not convinced, but I sure was.

It reminded me of the other night when we were talking about our stay in Seattle before we went to Thailand. Our friend Molly was over for dinner, and she asked Andrew what his favorite thing was in Seattle. “Breakfast,” Andrew said with an enormous grin. You see, the hotel where we stayed had a nice breakfast buffet, which was monitored by an elderly woman named Mary who doted on Andrew to no end. Molly gave us a quizzical glance. “What was your second favorite thing?” we asked. “The van,” Andrew replied, referring to the airport shuttle that took us to the hotel. He remembered the driver’s name because she also spoiled him shamelessly.

There was a piece of me that thought, “I spend hundreds of dollars to take this kid with us to Seattle and then Thailand and all he remembers is the breakfast buffet?” But then I realized how awesome it is that Andrew still thinks about the trip in whatever details he has chosen. And given my current droopy state of mind, what a timely reminder to appreciate the everyday wonders we encounter. If you think about it, a breakfast buffet is indeed a pretty impressive sight with all those stacks of pancakes and boxes of little cereal and crystal bowls brimming with fruit salad. Truly this stuff trumps the Space Needle.

After we had recovered from our vet visit, I got a call from my cardiologist in Philadelphia who said I could drop my daily prednisone dose a little lower in my ongoing taper. Instead of alternating 17.5 mg. with 20 mg., I can now take 17.5 mg. every day. Although I would have preferred a phone call in which the doctor said it had all been a terrible mistake and that I had never been sick in the first place – eighteen doctors somehow all misdiagnosed me – it was damn good news. I am thrilled to drop the dose, however incrementally. Now, I know it’s nothing as cool as a dump truck or a breakfast buffet, but you’ve got to focus on what you have, right?

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And You May Ask Yourself–Well…How Did I Get Here?

July 24, 2006 at 12:29 pm (Uncategorized)

Somehow on Saturday I ended up on Andrew’s bed, sobbing into his Thomas the Tank Engine pillow. Actually, I know exactly how I came to this place while Andrew was at the park with his babysitter Andrea.

Jay and I had begun to plan our weekend. It’s been really hot lately, so Jay got the idea to borrow a friend’s kayak and head up to a nearby lake. He’d gone without me before when I had pneumonia, and Andrew had adored being out on the water. It seemed like an excellent idea – until we started actually figuring out logistics. You see, I can’t paddle a kayak because of the injuries to my arm and neck. So Jay’s idea was to get around this impediment by ferrying me around.

Something inside me began to unwind a few minutes into our conversation. I felt like I had a frayed rope dangling down the center of my gut, and every snippet of conversation about boating and me unthreaded the rope a little more, and a little more, until…snap. Suddenly the thought of stuffing my overly large body into a swimsuit and parading in front of people was overwhelming. As was the thought of preparing for this adventure. The worst, though, was the idea that I was incapable of paddling across a few dozen feet of water, that I would have to be carted about like some bloated invalid, while Jay and Andrew and whatever friends we met up with frolicked in the water.

Rather than separate the threads of fibers uncoiling within me, I lashed out at Jay. “Oh, this will be really fun for me,” I said in my snippiest, most sarcastic voice. “Next time your bum shoulder is bothering you, let’s go skiing. But don’t worry. You can sit in the lodge and watch while I go on the slopes.” Jay paled. When I get mean and angry, I don’t respond well to any reply, whether its kind or cruel. I’m just a bitch. “I’m really sorry,” he said. “I didn’t think of it in that way. I was just trying to come up with a way that we could all have fun without straining your arm.” And I know that he was telling the truth.

I huffed and puffed around the house, before I began to feel incapable of standing or thinking or existing. When did my life become so unremittingly shitty? When did I become so uncomfortable in my own skin and so out of sorts with my physical self that I would prefer to cloister myself in a ninety degree house rather than don a pair of shorts? I felt horrible to have taken out the brunt of my emotions on Jay, but I wasn’t ready to apologize because I felt skinless.

So, I hid in Andrew’s room, lay down on his narrow twin bed, and bawled into his Thomas the Tank Engine sheets. I know I’ve talked smack about Thomas and the gang in the past, but on this occasion, I found the unblinking eyes of the trains quite comforting. They never grow old or sick or fat; they never ask me to buck up and get going. In the worst case scenario, Thomas and James might be a little naughty before returning to their usual “really useful” selves. I left a large smear of tears and snot on Thomas’ beaming visage before heading off to make amends with my husband.

Jay has been with me long enough to know that my meltdown over paddling wasn’t just me weirdly channeling my sadness and anxiety into matters of kayaking, like I sometimes transfer the entire burden of my illness onto a messy house and behave as though if we could just clean up our clutter everything would be fine. No, this was a genuine concern.

Up until a little over two years ago when I was diagnosed with cardiac sarcoidosis and put on a high dose of prednisone, I had been fortunate to have been able to pursue any physical activity I wanted (well, almost any – I haven’t been able to run since I blew out an ankle ligament when I was 18). Kayaking was a particular flash point because it was the last athletic activity I had been able to participate in fully, and as an equal, with Jay. When we lived in Palau – a tiny Pacific island nation between Guam and the Philippines– our favorite activity was kayaking in the bathtub-temperature water that was half a mile from our house. We would meet after work nearly every day, drive out to the marina, grab our boats, and paddle for a while. When we got overheated or just wanted a break, we’d tie up the boats and swim and snorkel in the open sea. I will remember until the day I die the sensation of floating above intricate castles of coral with schools of absurdly bright fish darting around us. We would sometimes hold hands as we watched this alternate world below us. Then, we would swim back to the kayaks, pull ourselves into them, and watch the sun set into the sea before we headed back for the dock. Darkness settles startlingly quickly near the equator; by the time we had hauled the boats back into their storage racks, blackness surrounded us.

Our sixteen-month stay in Palau culminated with our ninety-odd mile kayaking trip down the entire length of the country. We carried all our food and water with us, and slept on the open beaches of the uninhabited islands where we landed. We paddled next to sharks, swam with giant sea turtles, and hiked up the volcanic cliffs on some islands to see ancient ruins. It is still difficult for me to think (much less write) about this time because I was happy in a way I had never before been. Then we came back to the States, and I got pregnant. It was not a physically untaxing pregnancy.  (Among other things, Andrew parked himself on an old fracture in my tailbone and I could not walk without pain for the last 3 1/2 months.)  Three months after Andrew arrived, I got sick with the sarcoidosis. Everything has changed since those days on the sea, when we were carried only by currents and the strength of our arms.

But it wasn’t just my inability to paddle that I sobbed about with Andrew’s railroad friends. I love physically pushing myself. Jay and I backpacked for days in the wilderness, carrying our supplies and moving as lightly and as quickly as we could. When we went to New Zealand, we hiked at least twenty miles a day; when we visited the remote island of Molokai in Hawaii, we witnessed everything on our feet, not on the backs of mules as most tourists do. Here in Helena, we are blessed with amazing parks and trails right in town. We typically spent our weekends hiking up Mount Ascension or Mount Helena, or driving for longer treks to Glacier National Park. But now, I don’t think I could make it up Mount Helena with the weight I’ve got on my ass.

Long before I met Jay, I was a competitive cyclist. I’m not trying to brag when I say I was really good. I just was. I went to training camps at the Olympic Training Center with Lance Armstrong when he was just a raw talent coming out of Texas. When I was a fifteen year old girl, I was a lot faster than most of the grown men I raced against in Louisiana. Riding one hundred miles was no great shakes, just a Saturday training ride. Eventually, I quit racing because I grew up and wanted to do something besides ride my bike and obsess about how many fat grams I was consuming in a day, but I’ve always like challenging myself. When Jay ran a marathon in Seattle, I decided that what the heck, I would run the half marathon (even though I hadn’t really trained). It was fun.

While I intellectually know that the limitations I’ve had imposed on me with sarcoidosis (heart rate restrictions and such forth) are next to nothing compared to some people I’ve met who are hooked up to oxygen and unable to walk, much less hike up a mountain, I still feel acutely the loss of the activities I cannot do. Having a chronic illness, particularly one that incapacitates us in some way, involves a great deal of mourning – something I’m particularly bad at. I prefer to put things out of my head and pretend everything in my life is just fine. Clearly, this strategy isn’t as effective as I’d like, what with my sobbing in my son’s bed on a sunny Saturday.

So, here’s my question of the day: how do I grieve the pieces of myself that this illness has taken from me without succumbing to the disease? Is it possible to let the sadness into me in smaller doses than the Great Flood of July ’06? I have no idea.

I did, however, pay attention to the world of my old sport. Yesterday Floyd Landis won the Tour de France, which is, in my opinion, the most physically challenging athletic event in the world – ever. Here’s the thing, though. He did it with one functional hip. He’s had some degenerative bone disease for the past two years that has crippled him to most activities except cycling. I mean, the guy can’t really walk. He kept the condition a secret, even though he has been in chronic, debilitating pain. But he won the Tour de France. And he took home the yellow jersey in a particularly gutsy fashion. He was winning the thing, but then had a horrible day in the mountains and lost something like eight minutes in one of race’s stages. A lot of people would quit. They would say, “My hip is killing me, and now I blew my lead and all the commentators are saying I’m out of the race. I’m done!” Not Floyd Landis. He showed up to the press conference with a beer in hand, was noncommital, and didn’t succumb to direness. The next day, he gained back all that time, and went on to win the whole thing.

My take-home lesson from that is not to quit (and at least as importantly, to grab a beer after a bad day). How I can mourn a little and still not quit, I don’t know. But I did decide that I was being idiotic about the kayaking thing. So, on Sunday, we went up to a lake with our friend Martha and her daughter. I wore a bathing suit, and no one screamed and ran for the hills at the sight of my thighs. I even somewhat gracefully accepted a ride to an island with Jay in Martha’s canoe. And I had a ton of fun.

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Pain the Neck

July 21, 2006 at 11:39 am (Uncategorized)

I feel a little silly complaining about the lingering aftermath of Our Really Bad Car Accident when the world seems to be going to Hell in a Handbasket, what with two wars in the middle east, Somalia continuing its disintegration, trains getting blown up in India. Death, destruction, refugees, mayhem. And then there’s my arm and my neck. But since the Golden Rule of Writing (why I’m feeling compelled to capitalize so unnecessarily is beyond me) is to write what you know, I will stick to muscle tears and scar tissue and steer clear of the rest.

Let me begin by saying I am very lucky not to have incurred more serious issues like a broken neck or a crushed head, and I am even luckier that Andrew emerged from the smashed car with nary a scratch on him. I know my mother remains in a lot of pain, but things could have been a lot worse for her too.

Recognizing that I have much to be thankful for has never stopped me from bitching about how bad things are, of course. I learned last week that I didn’t just have a Big Ass Bruise on my right arm, but had actually torn the triceps muscle off the bone in one of the three places it attaches. No wonder my arm was hurting so goddamn much and it was impossible for me to lift anything. There’s nothing to be done except work on the swelling and wait for the thing to heal. Surgically reattaching the muscle causes more problems than it alleviates, and I’ll get back full use eventually.

Then there’s the whiplash in my neck, which is keeping me up at night, giving me headaches, making me cranky, and problematizing sitting in front of the computer and working, as well as driving. This too will just take time to heal. I can’t start strengthening the muscles yet, since they are still inflamed. The doctor said that both injuries will take longer than normal to heal because of my prednisone and my underlying immune system. problems. So I’m icing both body parts, gently stretching them, and trying to be patient, which is never my strong suit.

I am also going to physical therapy three times a week with St. Anna of the Hands. (I don’t believe that’s her official title, but you get the idea.) St. Anna is from Sweden, although she has been in the U.S. long enough that she has lost most of her accent. I think it’s only because I lived in Norway when I was a kid that I am attuned to the peculiar Scandinavian rounding of vowels in the background of her words. She also has what I would characterize as a Scandinavian sensibility, which is at once dour and kind. (I mean, she hearkens from a place that zealously redistributes everyone’s income to a point of equality found nowhere else in the world. There’s a lot of warmth in that, but also a lot of diligence and abstemiousness. ) St. Anna doesn’t give me much sympathy in a gushy American way – she doesn’t do the whole “poor you” routine – but she is incredibly steadfast in her efforts to make my neck and arm feel better.

St. Anna should take out an insurance policy on her hands. They have a way of finding the rips in muscle fibers, the knots of scar tissue, the achiest parts of my neck and arms, and working on the area with the perfect amount of pressure. The lumps loosen, the aches diminish, my headache recedes. She told me that in physical therapy school, one instructor told her that a good therapist should be able to tell the date off of a coin buried in a pocket by touch alone. After having St. Anna’s hands on me, I’m pretty sure she could even tell where the thing was minted.

One time while I was laying on the table, we started talking about how Americans always want a quick fix for difficult problems. You know, if we want to lose weight, we assume we can do it really fast while eating nothing but bacon and steaks. God forbid we simply ingest fewer calories than we expend and take the long, slow path. In the same vein, when we get sick, some of us turn to faith healers and quacks. She told me about this boy in Minnesota who is getting a reputation for healing people. It’s not a religious thing, although there’s plenty of that going around too. No, this kid rearranges the energy around a person, or some such thing, and heals terminal cancer patients and the chronically ill.

“I don’t know what to think about things like that,” I told St. Anna. “Hearing this stuff makes me question my rationalist worldview, and I don’t like it.” St. Anna agreed with me and then said, “I believe in the healing power of human touch and human kindness.”

Human touch and human kindness. I believe in those things too. Who knows if some people can call down Jesus or throw up force fields around people to heal? I don’t think we’ll ever be able to understand why some people get second chances and others don’t. Since I’m one of the sick right now, I tend towards grouchy skepticism. But human touch and human kindness are things I can get my brain (and my arms) around. For some reason, even though my neck is throbbing and the world is blowing up around us, I find it comforting to know that St. Anna can diminish my pain with her hands alone. I want to take my kindness and my love and launch it out into the world, too. I’m not sure how I can do this for the people in Lebanon and Iraq, Israel and the U.S. But I can start small and try to be sure to reach out to the people around me. As a wise person once said, “Be kinder than necessary because everyone is fighting a great battle.”

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Me, My Hump, and I

July 19, 2006 at 12:28 pm (Uncategorized)

It’s hotter than hell here in Montana. We’ve had a string of days over ninety degrees, and the forecast calls for the mercury to top one hundred later this week. We have no air conditioning, and our bedrooms are on the third floor.

Days like these, when it’s close to eighty degrees in the early morning, make me fantasize about cutting my long hair – or at least pulling it off my neck in a pony tail or a bun. When I was younger, I had very short hair, and I liked the feeling of freedom it gave me. However my husband Jay is partial to my long locks, as is Andrew, who uses them to tickle his nose when he’s falling asleep.

To be honest, though, the real reason I always let my hair flow down my back has little to do with spousal approval. It’s much more embarrassing than that. It’s because I have a giant hump on my back. Yes, at the age of 34, I have what is called a dowager’s hump – or a camel’s hump, or a fat back, or a prednisone hump. And I find it entirely loathsome and irritating.

I met an elderly woman last year at a sarcoidosis conference who called prednisone “the devil’s wonder drug.” No other description I’ve heard comes as close as this to capturing the contradictory essence of prednisone. Its panoply of side effects is nothing short than hateful, yet the drug saves lives and makes life livable for millions of people, including me.

Prednisone is a corticosteroid, a synthetic version a natural hormone produced by the body’s adrenal glands. From my limited understanding of its benefits, it acts as a massive anti-inflammatory agent, as well as an immunosuppressant. For people suffering from any type of inflammatory or autoimmune disease, of which sarcoidosis is just one, prednisone can work almost miraculously to decrease the problematic inflammation or immune response. For me, the drug has eliminated the manifestations of sarcoidosis in my heart, lungs, and lymph nodes.

I have paid a steep price for these benefits, though. The patient information sheet that comes with each prescription of prednisone is a dire tome. The drug can cause weight gain, stomach upset, muscle wasting, osteoporosis, increased sweating, fat redistribution (the underlying cause of my hump), water retention, mood swings (even psychosis), Cushing’s syndrome (a bloated, puffy face), eye problems, diabetes, delayed wound healing, difficulty fighting infections, increased sensitivity to the sun, and hair growth in areas you don’t want it – like your face and back. And, if you stop taking it without gradually weaning your body off it, you can die because prednisone shuts off your body’s natural production of adrenalin.

I am in the early stages of a prednisone taper. So far, so good. I haven’t had any heart problems yet. In a couple of weeks, my Philadelphia cardiologist will drop my dose a little lower. I am counseling myself to be patient, though. The whole process, assuming I don’t have a sarcoidosis flare-up in the heart, will take at least a year. And, according to the cardiologist, most chronic sarcoidosis patients with multi-organ involvement never actually get off the drug, though they are able to take a lower dose.

For whatever reason, the dowager’s hump on my back bothers me almost as much as the sixty-plus pounds I have gained. The damn thing is just unsightly. It bulges out of the necks of my t-shirts, protrudes from blouses, and causes me to look stooped and old. Combined with the general thickening of my neck area, the hump is, to my eyes at least, hard to miss. This is why I wear my hair long, even when the temperature is in the three digits and I otherwise want nothing more than to shave my head.

There is nothing I can do about the hump, though. The doctors say it will shrink and disappear once I am off the prednisone. Whether it gets smaller on a lower dose of the drug is an open question. “Can’t you just suck all that nasty fat out of there?” I asked Dr. Doogie in exasperation one day. Apparently not. I am stuck with my hump for now.

I have found that the best way to deal with some difficult things is to make fun of them whenever possible. Rather than cringe about all of my weight gain, I like to be up front about it and tease Jay that if he’s not nice to me, I’ll sit on him. If I’m not direct about these things (and if I’m not able to chuckle about them from time to time), I feel ashamed of the extra pounds, disgusting in my own skin, and morose. It’s not like I chose to get sarcoidosis and take a bunch of prednisone, so I have no reason to feel loathsome or guilty. At least, that’s what I keep reminding myself.

Jay understands my need to use sarcasm. When I complain about my larger thighs and stomach, he tells me, “Oh, now, don’t worry. There’s just more of you to love.” I know he’s not crazy about Rebecca squared, but I appreciate his ability to treat me and the issue of weight gain not only with kindness, but also with humor. Laughter chases away some of the demons of chronic illness.

As to the hump, we have decided that, rather than rail against it, we will give it its own identity. “Talk to the hump!” is a frequent response I give Jay when he asks me a question I don’t particularly like. Or I’ll tell him that my hump is unhappy with the current state of affairs and is threatening to secede. Jay will pat my hump and even give it a kiss from time to time. Who says that fat backs don’t need love and affection too? “I think it’s kind of cute,” he told me one evening, when I was bemoaning my hump. Cute? This was sweet, but just not true. The hump may be mighty; it may have a personality; but it certainly isn’t cute. But the fact that Jay says this reminds me yet again how lucky I am to have a man that loves me – and my hump – unconditionally.

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Getting Out

July 17, 2006 at 10:51 am (Uncategorized)

This weekend I was finally feeling well enough to venture out of the house. After five weeks of pneumonia and neck injury, it was almost surreal to see the world again. Blinking in the bright sun just outside our front door, I felt like a prisoner freed from a dank cell after years of unjust confinement. First, we went to watch our babysitter Andrea sing in her band at a coffee shop. Then we went to three parties. Granted, two were kiddie birthday parties, but nevertheless, we were required to socialize and mingle with the adults. Even stranger, given my sartorial sense of late (let’s call it invalid chic) I wore shoes, as well as pants without an elastic waist. I even showered two days in a row.

The truth is, I felt a little scared to emerge from my den after so many weeks. For three weeks, I was stuck in bed with pneumonia. Although that whole experience was unpleasant, I had gotten accustomed to lying in bed, coughing, covered in a sheen of fever-induced sweat. I was used to dwelling on morbid, grumpy thoughts and riffling half-heartedly through books and magazines. As soon as I was able to get up and around, I was in a car accident. Back to bed, I went, and back to the familiar routine of pain and dark thoughts.

I read somewhere that patients who are mistakenly diagnosed as terminally ill, and who then later recover, often suffer from depression in the wake of their good news. Apparently, being sick became part of their identity. Once that piece of themselves was taken from them – and they were expected to jump back into health and happiness with a giant grin on their faces – they became confused and depressed because they felt as though they had lost of key part of who they were.

It sounds utterly bizarre. Who wouldn’t want a new lease on life? Who wouldn’t clamor for the chance to return to work, family, and a future? It makes some sense to me, though. I’ve only been chronically ill for a couple of years, but in this short time, my medical condition has threatened to redefine who I am. I have become accustomed to being sick. There are times when I forget about the self who is a writer, an athlete, a teacher, and an avid outdoorswoman, and become focused on the self who is a patient. I think this is natural. After all, having a chronic illness like sarcoidosis (especially since it has violated my heart) involves spending quite a lot of time, both directly and indirectly, with the disease. There are countless doctor’s appointments; there are the daily repercussions (both physical and emotional) of being sick; there are the pills to pop every morning and evening; there are my attempts to educate myself about the condition. I can go a couple of weeks without an appointment or without becoming sick with some secondary infection. It is wonderful to unwind into health for these respites. But, eventually, some aspect of the disease rears its head, and I am forced to remember it all.

I have a friend who suffers from two serious chronic medical conditions. From what I’ve heard, her level of denial makes mine look fit only for amateur night. She sees doctors only when she is falling apart, and doesn’t take very good care of herself in between these appointments. Her friends and family are concerned, and, because they love her and want her to be healthy and alive for as long as possible, nag her and want her to take her diseases more seriously. I understand her impulse, though. Once you cede an inch to illness, it threatens to claim ever greater pieces of you. Go the doctor one time and he’ll order five tests and send you to five specialists. Let dark thoughts of death and invalidism into your brain for just a few moments, and it seems as though they’ll set up a colony of negativity and doom.

I just finished reading The Shadow of the Sun, a fascinating collection of essays about Africa by Ryszard Kapuscinski, who was a correspondent on that continent for nearly thirty years. One topic the book addressed was the complete breakdown of civilization in Liberia. Since the country was settled by freed American slaves in the nineteenth century, you would think that ex-slaves would arrive on foreign shores and try to set up a utopia of equality and justice. Not so. The former slaves wanted nothing more than to reinstall the system they had just escaped – but with themselves at the top, not the bottom. Within months of landing, a few hundred ex-slaves had built plantations and enslaved thousands of native Africans. Even after slavery was eventually abolished in Liberia, the descendants of the former American slaves established an apartheid system long before South Africa did. According to Kapuscinski, however, this is not as strange as it seems as first glance. The Liberian settlers were victims of what he terms a slave mentality. They could not envision a world of freedom and equality. With this paucity of vision, they could only reorganize a terrible system, not revolutionize it.

Something in this narrative resonated for me. Being chronically ill puts you at risk of a “sickness mentality” that is every bit as insidious as the slave mentality Kapuscinski describes. Once you become enmeshed in this sickness mentality, you go from being a person who happens to be sick to a sick person. You dwell on every symptom, and research every possible angle of the disease. Being sick consumes nearly every bit of your mental landscape, as well as ravaging your body. I know what this feels like. It is terrible to live in this straitjacket of illness.

Finding balance between rashly ignoring my disease (and thus jeopardizing my life) and sliding into the lethal embrace of a sickness mentality is for me one of the hardest parts of having sarcoidosis. It’s all about balance and moderation, two things I have never been very good at. Now the stakes are a little higher than a bike race or a publication. Now, I feel like I am not only fighting for my life but for remaining who I am.

I am fortunate that I have Jay and Andrew to keep me on the path between these two cliffs of denial and over-dwelling. Jay pushes me to go to the gym, to teach writing classes, to do my own writing. He takes on extra work around the house so that I have fewer excuses not to do the things I love. Andrew has no space for my sickness. With him, I am just a Mom. As such, he expects me to read and play, go to the park, cook him dinner, dance with him, and tickle him in the bath. He knows who I am. And he won’t let me forget it.

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Sleep No More

July 13, 2006 at 12:10 pm (Uncategorized)

My two-year-old son Andrew does many things exceptionally well. He has the vocabulary of a four-year old, can walk a mile or more, has flown to Asia and back with nary a peep, and eats lentils with curry and other foods not typically favored by his age group. He doesn’t mind taking baths or playing by himself. He is kind to the cat and genuinely tries to be helpful around the house. Yesterday he vacuumed the kitchen floor and unloaded the silverware from the dishwasher. He is even mostly potty-trained.

He does not sleep, however.

Perhaps I should be more specific. Andrew does not easily fall asleep, nor does he typically stay asleep through the night. This can be frustrating on the best of days, but especially so when I am feeling moody and depressed and want nothing more than to mope in bed, read the People magazine I lifted from the doctor’s, and turn in early. It is on these nights – and last night was one of them – that I am reminded of how truly stubborn my son is. This is nothing new. Ever since his infancy, Jay has parodied Macbeth when describing his son: “Sleep no more: Andrew doth murder sleep.” I don’t know about Andrew murdering sleep per say, but his sleep habits (or lack thereof) doth put me in a murderous frame of mind.

Let me give you a peek into life after 8:00 PM in our household. After dinner, Andrew gets to putter around the house and play with his approximately nine million matchbox cars. Then we herd him to a bath, wheedle with him to leave the bath after a good forty minutes, chase him around his bedroom, and force him into pyjamas. He has a final cup of milk, brushes his teeth (which means licking all the strawberry toothpaste off of the toothbrush and then demanding we brush his tongue, of all things), and at last hops into bed. Then we commence reading time. Andrew loves books. He has also advanced to the point of wanting stories with a plot and a conclusion, which means we can’t just skim a couple of picture books and be done. No, we read Paddington Bear, Babar, Madeline, Frog and Toad. We’re talking long stories, so we cut him off after two or three. He whines for more. “No, it’s sleep time,” we say, and turn off the light. Now the fun really begins.

It is now between 9:30 and 10:00. “Read me one more story,” Andrew says about a dozen times. We’ve learned in the child-rearing advice books that it’s important to calmly give the same response to late-night requests such as these. “No, it’s sleep time. The day is done. Go to sleep. We have a busy day tomorrow.” Finally he figures out he’s not going to get another story, and begins to strategize other ways to get out of bed. “I have to go pee,” he says. This one always wins him a trip to the bathroom the first time. He squeezes out a couple of drops of urine, and we return to bed. Two minutes later, a small voice pipes up in the gloom of his night-light- illuminated room. “I have to go pee again.” We take a deep breath. “No, sweetie. You just went.” He cries and whines. He’s tired, after all, so he’s cranky and volatile. Eventually, he forgets about his bladder and moves on to his bowels. “I have to go poop,” he proclaims. This also nets him one get-out-of bed-free card. Off we go to his little potty, where he sits for a few minutes and pouts that we won’t read him a story while he tries to use the bathroom. He never actually poops on these trips. Back to bed we go. “I have to go poop again,” comes the little voice. We go through a brief sob-fest about denying him access to the bathroom, and then things quiet down. His breathing grows steadier and begins to rasp in the back of throat. “Ahhh,” we think. “We got him.” The second that thought zips down our neural pathways, Andrew says clearly and loudly, “I’m thirsty. I want a drink.” And so it goes.

Last night, Andrew finally fell asleep around 11:30. This is late even for him and we were convinced he would sleep through the night. Not so. Around 4:00, he awoke from a bad dream and screamed, “Daddy, Daddy. Mommy, Mommy,” until Jay went to him in his bed and soothed him. For the next hour, he did this panicked yelling every fifteen minutes, before eventually drifting off until around 6:00, when he padded into our room, said “Hello,” in the brightest voice imaginable, hopped into our bed, chatted for a while and then slept until our babysitter, Andrea, arrived.

I honestly don’t want advice. We’ve tried every bit of folk wisdom and scientific conditioning method passed our ways. We’ve read books, and listened to friends. We’ve endured the incredibly obnoxious people who tell us, “Well, my little pookie slept through the night from the day we brought him home from the hospital.” We’ve ignored Andrew and let him cry and scream and pound on the door. He’s pounded for three hours. (Did I mention he is stubborn?) We’ve let him fall asleep on the floor. We’ve bought him special sheets and new stuffed animals to ward off scary thoughts. We’ve limited his fluid intake. We’ve tried putting him to bed earlier and later. We’ve made his room brighter and dimmer. We’ve played soft music. We’ve run the fan for background white noise. And the little man will simply not go gentle into that good night.

When he finally drifted off (for the first time) last night, I came back to our bed and began to tell Jay what a terrible mother I am for raising a boy that will not sleep. I imagined Andrew in middle school bellowing, “I have to go poop” at four in the morning while his father and I hover outside his room, clucking like concerned chickens that he has a math test the next day. I saw him in high school creeping into our bed and asking for a cup of milk. See, I tend to extrapolate situations to their worst possible conclusion. It’s truly a gift I have. But then Jay reminded me of all the things Andrew does so stunningly well. “It’s just who he is,” Jay told me. “He’ll learn when he’s ready.” Sage advice.

The funny thing is that in all the fretting about Andrew’s sleeplessness and stubbornness, I forgot to be depressed. I forgot about sarcoidosis and mortality and my prednisone hump and focused instead on the beautiful little boy who has graced us with his presence, but not with his sleep. My new better mood has persisted into the day. It’s as if my brain remembered that I have important things to worry about, and that the other stuff – the chronic illness and its retinue of woes – won’t respond to brooding or problem-solving. It’s better to focus on someone small and cute and very much awake in the dark. I appreciate all the concerned and thoughtful messages people have passed my way in the last couple of days in response to my darker entries. Your kindness holds me up. But really, I am all right. Tired, but hanging in there.

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Dark Day

July 12, 2006 at 12:44 pm (Uncategorized)

I keep making wide turns in my head, but instead of changing the direction of my thoughts, I keep running into the same blank, brick wall.  I feel lousy, internally and externally, but sometimes it’s hard to separate chest pain from heartache, a headache from a turbulent mind.

Lots of people have written about depression: William Styron, Kay Redfield Jamison, Virginia Woolf, St. John of the Cross with his dark night of the soul.  They have taken the nebulous blackness that settled over them and teased out the specifics.  I don’t have anything to add to their legacy.  Whenever I try to write about this peculiar state of mind, I end up resorting to cliches and generalities.  I find it nearly impossible to explain this sadness that chases its own tail in my head.

But not a lot of people have written about depression and chronic illness.  We who suffer from sarcoidosis and lupus and multiple sclerosis and rheumatoid arthritis and a host of other afflictions that don’t kill you right off the bat but make you feel miserable have teams of doctors poking and prodding our flesh, cataloguing our symptoms, testing new drugs on us.  But who looks after our hearts and souls and minds? The White Coats and their nurses certainly aren’t around twenty minutes after they deliver bad news and send us on our way.  “Who knows what your future holds?” they tell you.  “Come back in three months.  And have a nice day.”

I am fortunate to be able to afford some of the best available care for sarcoidosis.  I have a brilliant young doctor with a string of consonants after her last name– MD, PH.D.  She has referred me to a battalion of other brilliant young doctors.  One looks at my heart, another at the electrical functioning of my heart, another at the muscles and nerves sending signals from the brain, and still another at the brain itself.  When I go to visit them, they lay open the mysteries of my body, as if they could shrink me and spread me out and look at me under a microscope.  But the best they can do about the rest of me– the non-physical self that has to watch over all this indignity– is ask me if I’m feeling depressed.  “It’s common for people with chronic disease,” they’ll add, as a way of explanation.  And then they look away, as if they cannot bear to meet my eyes when they hear my answer.

In response to their question, I have told them that I feel very crummy about all of this.  I try to explain that it is hard to wake up every morning and feel as if some gangster has taken me into a darkened alley overnight and kicked me all over.  “Well, chronic fatigue is a major problem with this illness,” they say.  I have told them that it’s difficult to have a heart that decides to dance the samba every few days, instead of behaving itself.  I have told them it’s hard to deal with the specter of death, with the awfulness of uncertainty.  I have told them that it saddens me to take medications that make me sicker than the disease itself.  And then they’ll ask me, “Are you depressed enough to think about suicide?”  Hell, no.  No, no, no.  And that is the end of that.  For them.  This is their litmus test of mental health or unhealth.  But I have to scrape the pieces of myself off the sidewalk and plod along.

Today’s entry doesn’t contain any words of wisdom or clever metaphors.  I think like many other people with a chronic illness, there are days when nothing makes sense, when the proverbial light at the end of the tunnel is very dim and far-off and in fact I wonder if the tunnel itself is all there is now.  I think it is alright to feel depressed and dark when it feels like I am struggling for my  life and with my life and yet nothing I do makes any difference.  This shall pass.  Maybe later today, maybe tomorrow, maybe next month.  But for now, it simply is.

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Crab Cake

July 11, 2006 at 11:42 am (Uncategorized)

Tap, tap, tap. Hear that? It’s the sound of me tapping on the underside of the shell I’ve been hiding in.

A dear friend once told me that he could tell when I was going through a difficult patch because he’d never hear from me. “Whoosh. Rebecca falls off the face of the planet,” he told me. “She becomes a hermit.” There’s a lot of truth in what Eric accused me of. When the going gets tough, I tend to seek out solitude and shun my friends. Although I like the image of hermit-ude – with its connotations of mystical contemplation, incense, and a cave of my own – it’s not quite accurate. I am less of a monk and more of a crustacean – a hermit crab, to be specific.

The hermit crab is an odd creature. For one, it’s not a “true crab,” according to a quick perusal of several Internet sites for hermit crab devotees. (I’m not using that term loosely. Apparently, the Hermit Crab Association holds annual Crab Conventions, complete with the crowning of each year’s Miss Crustacean, for hermit crab owners and enthusiasts.) Rather, the hermit crab (a catch-all nickname that does not distinguish between several unique species, the most common of which are Coenobita clypeatus and Coenobita compressus) doesn’t have a hard shell. It has to use other animal’s old shells for protection; as it grows, the hermit crab discards its borrowed digs of a shell and hunts for a newer, larger one.

I’ve always had a soft spot for hermit crabs, so perhaps it shouldn’t surprise me that I now identify with them. My family spent nearly ten Christmases, along with several summer vacations, on the Gulf Coast of Alabama. While people have been known to sneer at this “Red-Neck Riviera,” the sea warm, the sand soft and white, and the stretch of beach we stayed at adjoined a wildlife refuge and a state park, which meant that the dunes were mostly undeveloped with plenty of room forspawning turtles, mice, sea birds, foxes, and hermit crabs. (Sadly, the revenue-hungry local government has since changed its zoning laws so high-rise condos have sprouted over the past several years.)

Since I am red-haired and white skinned and even thinking about the sun gives me a burn, I liked to walk for miles on the beach rather than roast myself in the sun. (To be truthful, this is only partially accurate. When I was in high school, I was still convinced that I could tan if I just tried hard enough. So I’d plop myself next to my sister in the sand and end up inflicting second-degree burns on myself. Apparently I was a slow learner, though. It took nearly four years of burning through three and four layers of skin at a time to figure out that perhaps my problem wasn’t persistence but lack of melanin.) Part of strolling on a beach means beach-combing, and Gulf Shores had tons of washed-up shells. I loved picking up a shell to see if it was intact enough to keep, only to see an angry little head pop out with two antennae and two tiny little claws – a hermit crab.

Admit it – hermit crabs are darn cute. Part of their allure is how indignant they become when you disturb them. They never skulk in the back reaches of their borrowed shells and hide; instead, like grouchy old men, they stick their heads out and wave their claws around as if to say, “Put me down, you nincompoop.” I never tried to intentionally bother them, but I was never upset to find a hermit crab occupying what seemed to be a discarded shell.

This justifiable outrage is perhaps the main difference between me and Coenobita clypeatus or Coenobita compressus. I keep several shells (and we’re talking metaphors here, people!) in the dark depths of my closet. I pull them out and withdraw into them when the world and my place in it start to feel overwhelming. Usually, it takes a combination of Really Bad Things – like, say, a major car accident on top of pneumonia on top of having a chronic illness – to send me scuttling for my shell. A therapist would say that I’m depressed. And perhaps I am. I shun contact with others, want to sleep all day long, indulge in literature that I would normally sneer at, subsist on fat-laden carbohydrates (like, oh, cookies of the buttery, chocolate variety), snap at Jay when he even looks at me sideways, feel morose, have no energy, and don’t enjoy anything. Well, if that doesn’t read like a DSM IV checklist for depression, I don’t know what does. But I’ve been depressed before. Really, really depressed – like the crazy kind of depressed, and this feels different. This feels like a survival strategy. And I don’t holler at people when they tap on my shell. I just screen my calls and take a few days getting back to people.

The truth is that I am indeed struggling right now. I don’t feel well, and sometimes I get tired of lousy things happening to me and the people I love. I feel exhausted just thinking about having to get re-tested and re-examined by the doctors in Philadelphia in September (my quarterly sarcoidosis check-up). I feel overwhelmed at having a locked up neck and back from the car accident, sixty extra prednisone pounds on my body that need losing, a son with more energy than I can contemplate at this point, a husband who is stressed from trying to do everything, an immune system that doesn’t just throw open the gates for disease but lays down a red carpet and tosses rose petals at the viral intruders, a heart that doesn’t tick quite properly…and no idea where any of this is going. Just writing about this makes me tired, tired, tired. For days (and weeks) like these, I take to my shell. And I think this is OK, as long as I remember to emerge.

The fact that I am writing today, that I am mulling over an essay in the works, fretting about Andrew’s behavior, feeling grumpy that my neck won’t allow me to exercise, and planning to call a few people back means that I’m tapping on the shell, testing its parameters and thickness. Tap, tap, tap. I’ll be coming out soon. But not quite yet. There’s still the crowning of Miss Crustacean. And this time, I think I’m a real contender.

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