Enough is Enough

September 28, 2007 at 1:53 pm (Uncategorized)

I’ve reached this point before. There have been several times since I’ve taken up residence in the weird world of Chronic Town when I’ve thought to myself, “I can’t take this anymore.” Luckily in these instances – like when my liver biopsy went awry and I had to spend a week on my back or when the prednisone I take to treat my sarcoidosis gave me diabetes – I’ve always had more resilience and fortitude than I gave myself credit for, and I learned to live with a new obstacle or a new piece of bad news. But here I am again. And I really can’t take this anymore.

Earlier this week we returned from my brother’s wedding in southern California. I was tired from the traveling, but genuinely happy. It had been wonderful to celebrate Ken’s marriage and to see far-flung relatives. Better yet was meeting Ken’s new wife, Mai Lin, and her two sweet and spunky daughters. We had eaten good food, worked hard to help out at the various wedding events, and danced like wild folks at the reception. Even with my foot encased in a boot for my stress fracture, Jay and Andrew and I had torn up the dance floor for a few songs. Then Andrew re-discovered his cousin Paul and refused to dance with anyone else the entire evening.

The day after we arrived home, I had to visit my internist and my rheumatologist. I should have known that my sense of well-being wouldn’t survive a trip to the White Coats, but I had repressed the fact that once doctors start poking and testing my body, they usually come back with bad news. Especially this week. From the internist I learned why my reproductive system is out of whack. I had half-hoped that I was pregnant. But blood work revealed quite the opposite. Three years of prednisone therapy has taken its toll; the drug has messed with my hormones and sent me into early menopause. This explains my interrupted menstrual cycle, my mood swings, and my hot flashes that leave me (and anyone standing within ten feet of me) soaked in sweat. “Now don’t worry and make a big deal out of this,” the doctor told me. “As soon as you stop the prednisone, your hormones will return to normal.” You can always count on a doctor to trivialize bad news. How could I – a 36 year old woman with a serious baby craving – possibly worry about something as insignificant as early menopause? Silly me. Of course, the doctor didn’t have an answer to my concern that I will never, ever, in three billion years, get off the prednisone. Every time I dip my dose below ten milligrams, I start having cardiac symptoms.

The hits just kept on coming. My fractured foot, which broke because the prednisone weakened my bones (do you sense a theme?) is not healing. A recent MRI of the foot indicated that the sarcoidosis might be playing a role in this. Apparently granulomae (the clusters of white blood cells that characterize sarcoidosis) can form in scar tissue of all kinds; it is likely that this type of growth is preventing my bones from re-fusing. There’s not much the doctors can do except send me to an orthopedist on Tuesday to have my foot cast for another eight weeks. I won’t be able to drive, or walk, or stand for long periods of time.

Then there’s the matter of my liver. A recent test revealed that I have a non-malignant tumor called a hemangioma. This type of tumor is fairly common and usually poses no threat. Mine, however, is really big. And once these things get too large, there is a risk they will rupture and cause significant internal bleeding. My doctors aren’t sure if mine is big enough to warrant prompt surgery to remove it. They’re figuring out what additional tests to conduct and which specialist to send me to.

I came home from the White Coats and didn’t know what do with myself. I sort of felt like crying; I sort of felt like breaking things and screaming obscenities; I sort of felt like curling up in the fetal position under fourteen blankets; I sort of felt like shutting down. I did none of these things. Instead, I drove to Andrew’s pre-school and picked him up and brought him home. We ended up making a sturdy pirate’s scabbard for him by cutting out two scabbards from cardboard boxes, covering them with aluminum foil, and then gluing them together. Once the Elmer’s had dried, we had a pirate sword fight – he with the new scabbard, me with his old, soggy sword. We yelled “Aaargh” at each other and threatened to make each other walk the plank. It was fun and it kept me going. I don’t know what I would do with Andrew. He needs me – all of me – and this prevents me from shutting down in a morass of self-pity and overwhelmedness. He keeps me alive – in the fullest sense of that word.

Since then I’ve been putting one foot in front of the other. I’m trying not to think too closely about my baby-making equipment shriveling up prematurely; I’m ignoring my foot pain and the ache in my liver. But beneath my plodding I am deeply tired. My body has been damaged by the very treatments that were supposed to cure it – and still, the damn disease persists, worming its way into my bones. If I didn’t have Andrew, I’d probably spend more time raging at the sky, pondering where to go from here. But, as it is, I already know where to go. I’m going where my next step takes me. I’m going to keep putting one foot in front of the other and make dinner, do the dishes, cajole Andrew into brushing his teeth, read him stories, and fend off the worries that keep him awake at night. But, still, I don’t think I can take much more of this anymore.

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Thin Blue Lines

September 18, 2007 at 8:55 pm (Uncategorized)

I felt like I was straight from the pages of a woman’s magazine yesterday.  I had holed myself up in the grocery store bathroom with a pregnancy test I had just purchased.  The stall where I stood was dingy, and I had to balance the test’s stick on the back of the toilet while I waited the requisite two minutes for the results.  The scene suggested something far more dramatic than my reality.  I half imagined that I was a teenager hiding the test from strict parents, or that maybe I had an abusive husband who would use the knowledge of my pregnancy to exert control over me.  Luckily, my life isn’t that exciting.  I just wanted to make sure that I was definitely not pregnant before I had an MRI performed on my foot, which is stress fractured and still hurting after six weeks in an immobilizing brace.  Given my busy schedule, I simply didn’t have the time to run home with the pregnancy test before heading to the hospital –  hence the bathroom stall.

I am not supposed to get pregnant again.  Not only am I taking an assortment of medications that could potentially harm a fetus, I’m also overweight, which would put me at an ever greater risk for diabetes.  But the real reason is that my heart has been affected in unknown ways by the sarcoidosis.  Although it appears that the prednisone and Remicade have controlled the cardiac electrical dysfunction (caused by the sarcoidosis), the right side of my heart remains curiously enlarged.  I’m fortunate that the right ventricle and right atrium have stopped growing – which they were doing, with a disturbing regularity for a couple of years – but no one knows what caused this phenomenon and what to do about it.  Since pregnancy strains a healthy heart, my physicians are reluctant to give the green light to reproduce when my heart is already weirdly out of whack.  Jay and I have been very conscientious about the doctors’ orders.  I won’t go into specifics, but we are responsible.  Not only do we both want to keep me healthy, we also want to make sure that our existing child has a mother around before we start adding to the brood.

Intellectually knowing that I should not get pregnant with a second child doesn’t mean that I’m sanguine about it.  Sometimes I feel like my bones and my blood are screaming for a baby.  I’d heard about biological clocks before, but I’d always chocked it up to anti-feminist schlock – you know, make a baby now or you’ll regret it when you’re old and withered.  But something is definitely tick-ticking inside me.  It could be the proverbial clock, but the intense pressure I feel makes me wonder if it isn’t a bomb waiting to explode.   Seeing babies on the street makes my mouth water.  Passing infant clothes in department stores leaves me cooing to myself, “Oh, those onesies are so adorable.”  I’m jealous of friends with new babies, especially if they have an older child Andrew’s age, who I can watch play with the infant.  Who is this baby-crazy person I’ve become?  And what am I going to do about it?

As I waited the one hundred and twenty seconds in the grocery store bathroom, I came up with three hundred and forty-seven reasons why I should not want to be pregnant.  “Who knew what the baby would do to my heart,” I made myself think, along with, “And all the medications I’ve taken would probably mean that I’d have a mutant anyway,” and “My doctors will positively kill me.”  Then I recounted to myself how very unlikely it was that I was even pregnant.  In addition to Jay’s and my aforementioned responsibility, there’s the fact that we are parents to a three-and-a-half year old – which means that we live in a state of perpetual, gnawing fatigue and that we often have a small, sweaty boy appear in our bed in the wee hours of the night.  Let’s just say that none of this is conducive to romance.  If I were pregnant, it wouldn’t have to be an immaculate conception, but fairly darn close to it.

Beneath my busy brain telling me what to think and what to expect, however, I could hear my heart steadily thrumming that it wanted another baby.  My throat, my bones, my fingers, my breasts, my skin all sang out that they were ready to bring new life into the world.  I couldn’t help myself.  I just couldn’t.  I ended up praying in the dank, public stall for the test to register the magical “plus” sign.  “Please, God, let me be pregnant,” I whispered, before I stopped myself in horror.  Two minutes later, I unscrunched my eyes and looked at the test.  There were only two blue lines, one in the control box to indicate the test was valid, and a minus sign in the results box to signal my infecundity.  I tidied up after myself, flushed the toilet, and washed my hands.  I walked briskly out of the store and reported for my MRI only a couple of minutes late.

I know my brain is right.  I know that I shouldn’t overrule my doctors and conceive a baby when the risks to my health may be severe.  It’s that “may” that catches me up, though, and sets my blood boiling and my heart pounding.  Isn’t it possible that the pregnancy would go smoothly?  But, as Jay reminds me, “may” is too fine a reed to hang my life on.  And so I continue to be responsible, to ogle babies rather than make them, and to eat dark chocolate when my body starts humming electrically that it is ready, what are we waiting for?

I sometimes wonder if my desire to have another baby is so strong precisely because it’s been forbidden.  If having only one child wasn’t an imposed limitation, would I chafe against it so stridently?  Maybe not.  But the force of my body’s commands makes me think that this isn’t about me being stubborn and wanting to have my way, rather that this my heart’s true desire – but it is a desire, like many others, that illness has taken from me.  I know I sound self-pitying, and I know that I am fortunate to have borne one child and that he is healthy and happy.  I am aware of this, and I am thankful for the blessing that is Andrew.

It is just that Andrew is growing up far more quickly than I could ever have imagined.  I want the experience of nursing a baby again; I want the sensation of a baby’s brand-new skin touching mine, of brand-new eyes seeing the world and me for the first time, of sharing my blood and body.  I was so nervous with Andrew – partly because that is the way that all first-time parents are, but more because I was sick and terrified that I would die and leave him behind.  He was only three months old when I was diagnosed.  I’d like to think I did a fair job of keeping my illness from touching him.  I don’t think he’s traumatized.  But I do know that I lost many moments of his infancy and toddlerhood to my own anxiety.  I want them back.  I want to do it again – with a little more knowledge and a little more calm.  Plus, I want Andrew to have siblings.  Being an only child definitely has its advantages (for both him and us), but I think it must be a little lonely for him.  He would make a wonderful big brother (and, as an added bonus, another child would give him someone else, besides us, to boss).

“Why don’t you adopt a child?” I’m sure you’re thinking.  It’s a good idea, and it’s one that we’re trying.  We’ve started filling out the requisite paperwork for a domestic adoption.  We’ll have to let social workers come make sure we’d make fit parents.  Then we’ll have to write a profile of ourselves for birth mothers.  In Montana, the biological mothers quite rightly get to pick the parents for the baby they are sending away.  And here’s where it gets snarled.  It’s doubtful that we’ll even reach the part of the process where the biological mothers get to read our profile.  My medical condition will probably disqualify us from adopting in the U.S.  If the social worker does approve us, what mother would want to send her baby to someone who is chronically ill?  A foreign adoption might be easier in terms of my health, although I know for sure that China would not allow us to adopt a baby because of it.  But adopting a baby overseas is expensive – in the neighborhood of $20,000.  That’s a lot of money, and, to be honest, I can’t quite justify it.

Are my desires for a second child worth all this the dislocation, the anxiety, and the financial strain that adoption would necessitate? Perhaps the doctors are just being extra-cautious and covering their asses from potential lawsuits when they strongly recommend I don’t get pregnant.  So, should I just trust in fate (with the backstop of high-risk pregnancy monitoring) and just make another baby?  But, then, what am I thinking?  Shouldn’t I just let my brain win this one?  After all, we have Andrew.  Shouldn’t he be enough?  I can’t answer these questions, although I ponder them daily.  Some days I will come to one conclusion, only to completely reverse myself the next day.  As I turn the questions over in my head – and in my body – I’m all too aware of the thrumming and ticking within me.  I’m thirty-six.  There will soon come a point in time when biology overrides my hopes, when my age decides for me what to do.

Jay is usually more optimistic – and inclusive – than I am, so it surprised me when he told me that it was difficult for him even to consider adopting a child.  His reluctance turned out to have nothing to do with matters of patrimony.  He said he’d be happy to have a rainbow of children call him “Daddy.”  But for him, filing the official papers seeking adoption meant that my sarcoidosis had won yet another battle.  By not looking for a baby outside my body, he could avoid another recognition that we are utterly changed by my disease.  Trying for adoption became emblematic of defeat – another “can’t” to go along with can’t travel overseas, can’t go hiking with my wife, can’t count on the future, etc.  Once he figured all this out, he was ready to move forward with the adoption.

I never really understood his perspective until yesterday’s pregnancy test in the grocery store.  But then, as I stood locked behind the narrow stall’s metal door, I felt circumscribed.  It was as if the vastness of my heart, of my wishes, of my plans, of my hopes, were being squeezed behind that door, and caged in the steady, blue lines of the pregnancy test.  I tried to shake off this weird, jailed sensation after I dumped the firmly negative test into the trash.  But it followed me out into the parking lot, and down the road to the hospital.  It trailed me into the narrow MRI tube.  And today, I’ve seen the boxy bars out of the corner of my eyes.  I spend much of my effort resisting the limitations this illness has imposed on me.  I have vowed to refuse to let the sarcoidosis keep me from exploring the world with my son, from being the kind of mother of I want to be.  But all this refusing, resisting, and overcoming sometimes blinds me to the lines that bind me – the ones I cannot leap over, or around.

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The Story of Brave Mommy – for Andrew

September 16, 2007 at 5:57 pm (Uncategorized)

On our recent trip to Boston, we had to call the fire department for help. Luckily, my mother-in-law’s house wasn’t on fire. Nor did we have a major medical emergency. What we did have was a naked three-and-a-half year old locked in an upper story bathroom.

It was our last night in Boston, and we had an early flight to catch the next morning. We were tired from a busy day, which had included a trip to the Charles River to see the bronze statues of Jack, Lack, Quack, and the other ducks from one of Andrew’s favorite books, Make Way for Ducklings. It was hot and humid, and we were packing and sweating at the same time. Andrew was a bit wound up from the excitement of the ducks, as well as from getting a ride on a swan boat and having ice cream for lunch and dinner.

As is so often the case with youngsters (and puppies), the more tired Andrew became, the more needlessly and frenetically animated he grew. So while I stuffed our dirty laundry into plastic bags and Jay collected Andrew’s toys from under the beds, Andrew stripped off his clothes and ran around in progressively tighter concentric circles. Truth be told, I wasn’t paying much attention to him—or to the virtual Spirographs he was making—when, out of the corner of my eye, I saw the white flash of his naked body disappear into the bathroom and heard the slam of the door. “I have to go poopie!” he hollered from behind the closed bathroom door. “Well, that should keep him occupied for a few minutes,” I thought, with some relief, as I returned to two of the great mysteries of traveling with children: how had the number of our possessions and the volume of our belongings doubled after a few days in Boston?; and how could I possibly squash all of this into our already bursting suitcases?

Jay was the first one to notice that Andrew was locked in the bathroom. It didn’t seem like a big deal at first. I could hear Andrew giggling—still, with a touch of that tired mania—as Jay knelt at the outside of the door and tried to coach him into turning the deadbolt. Andrew did an excellent job of twisting the lock in the proper direction, but either the mechanism was stuck, or he wasn’t strong enough to deliver enough leverage to open it. He continued to laugh, but he was also rattling the door knob and banging on the door. “I am stuck,” he kept repeating. Suddenly, I didn’t feel so blasé about the situation.

We were fortunate that Jay’s mom insisted on calling the fire department right away because Andrew’s good mood quickly turned into full-blown hysteria. He was crashing against the door and had started crying. It probably didn’t help that he could overhear Jay and me agreeing that there was no way into the third floor bathroom from the outside because his mother’s ladder simply wasn’t tall enough. By the time the fire trucks arrived with their sirens blaring and their lights flashing, Andrew was hysterical. I was doing a mediocre job of calming him by telling him stories with my nose pressed against the door. I praised him for being brave and told him the fire fighters had arrived. “Nooooooo!” he screamed. “I don’t want the fire fighters. Noooo.”

I was genuinely perplexed by Andrew’s response. As I’m sure any other parent of a young boy will testify, there is nothing more fabulous in Andrew’s world than fire fighters. The highlight of his life so far had been a trip to our town’s fire station, where he met Captain Dave and the rest of the crew, and was allowed not only to sit behind the wheel of the giant ladder truck but also to press the button that started the screaming of the siren. When he plays, he frequently enacts fire rescue missions with his miniature trucks and ambulances, and when we drive through town, he’ll bellow with delight when we pass a fire truck, particularly if it has its lights flashing. I was sure that telling him that his beloved heroes were coming to his rescue would not only calm him down but also convert this terrorizing ordeal into an adventure. Boy, was I wrong.

Even though Andrew was shrieking at me to send the fire fighters home, there was no stopping them. Crouched in front of the door with sweat coursing off my face, I felt beyond powerless. What if in the throes of hysteria Andrew slipped and cracked open his head on the toilet? What if he tried to break down the bathroom door and instead broke his neck? What if he jumped out the window to avoid the rescue mission? I shouldn’t have worried. Andrew’s screaming stopped just as I heard the thud of boots on the bathroom floor as the fireman jumped through the window from his ladder. “Hello, little boy,” he said. Even before Andrew responded, I heard the padding of his little feet up to the door. “You know,” Andrew said, his voice clear again, “I’m pretty sure I can open this door by myself now.” To his credit, the man let my small son try to unlock the deadbolt one more time before he stepped in and did it himself. Andrew fell out of the room, into my open arms, and began sobbing and shaking once again. His naked body was slick with sweat, his face slimy with tears and snot.

Jay and his Mom wanted Andrew to come down and watch the fire trucks. He steadfastly refused and buried his head in my shoulder. By now I understood his reaction. In the world of play and imagination, Andrew is one of the fire fighters. He is rescuer, not rescued. Even on his tour of the fire station, he was in the driver’s seat—literally. What a terrible inversion this night had become for Andrew. He had become one of the bumbling folks needing rescue, like Mr. Frumble, the absentminded pig in the Richard Scarry books, who makes hundreds of brainless mistakes to bring out the brave fire fighters.

We didn’t really discuss the incident for a couple of days. We were busy with the rest of our trip, and any time we even mentioned it, Andrew became upset. I felt bad for him. I don’t have his rich fantasy life of being a gallant rescue hero, but I do know how utterly embarrassing it is to be defenseless and in need of professional help. Having an illness that involves a cardiac condition has involved a few too many trips to the emergency room—even once with an ambulance involved—for my liking. And I wasn’t even naked (with an unwiped bottom) and locked in a bathroom. I visualized one of my heroes (who shall go unnamed) vaulting through a window to help me out of a post-poop crisis. No wonder the little guy didn’t want to talk about it.

A curious thing happened in the coming weeks, though. Andrew began to ask me to tell him “The Story of Brave Andrew.” I quickly figured out that this tale followed the facts of the evening of the locked bathroom—with a particular emphasis on Andrew’s bravery in the face of an awfully scary situation. In this telling, Andrew bravely tries to open the deadbolt, but the treacherous lock refuses to cooperate; Andrew bravely overcomes his panic of being trapped and listens to his Mommy tell him stories; Andrew cries a little, but because he is very brave, he lets the firefighters come; Andrew bravely stands aside to let the firefighter drop into the room.

I have no trouble telling this version of the story because it is true. Andrew was indeed very brave. As he and I have discussed lately, bravery doesn’t mean not getting into difficult situations or not being afraid once you’re in a bad way. Instead bravery means doing something (or not doing something) even though you are afraid of it and even though you don’t want to do it. And that is just what my son did.

I am not one of those people who ever bought one of those hokey posters that were popular a few years ago. These were the ones that proclaimed that “Everything I Needed to Learn, I Learned in Pre-School/From My Cat/From My Dog.” I am a firm believer that I know a lot more than my young child (and my cat and dog, too). But sometimes, I do learn quite a lot from my pre-schooler. I think he can be such a telling example because he is approaching situations for the first time, so he behaves with passion, with significance, and with deliberateness. The night of the bathroom was one such instance. He has become an example for me on how to get through a terrifying experience. It wasn’t pretty; he hollered and shook and let his tears fly around the room. He made a fuss and almost broke a solid wood door. But he survived it. He was brave—brave in getting through the event in itself, but also brave in circling back to confront the evening later on his own terms. He could have simply never talked about it again. Plenty of us do that. But he has come to his own meaning of that night, rather than obliterate it from his memory. He has chosen not to focus on his fear, not to focus on his humiliation, not to focus on being dumb enough to lock a door he couldn’t then unlock. Instead, he has come to understand his own strength in a difficult situation.

With Andrew showing me the way, I am rethinking a few of my own recent obstacles. Living in chronic town certainly presents plenty of those. For instance, I spend many days undergoing tests, procedures, or appointments I would rather not have performed. But, as my son has proved, the bravery isn’t in enjoying these events, but in surviving them with my dignity intact. Just three days ago, I had to report back to the hospital to have an ultrasound of my liver done. A recent CT scan revealed a lesion on my liver that hadn’t appeared on previous images. It is likely either nothing, or simply a clearer picture of the granulomae that were revealed by an earlier biopsy. Nevertheless, I had to show up for the test and have my body manhandled by a careless technician who seemed to think it was appropriate to maul my breasts and press with all his might with his ultrasound wand onto the full bladder that is apparently necessary for the procedure to result in a good picture. But, like my son, I was brave. Not because I didn’t get grouchy with the technician and ask him to stop plopping my breasts around like they were slabs of meat, and not because I wasn’t scared that I had liver cancer, and not because I am so fed up with tests that I want to scream when someone mentions them. No, I was brave because I did it. And because I know I’ll do it again if I need to. But mostly because I try to write honestly in this space about the experience of illness. I could simply pretend I was healthy. But I’d like to think I’m brave for facing my demons and hoping others can learn from my mistakes. I’ll call this “The Story of Brave Mommy,” and I’ll dedicate it to Andrew—the bravest little guy in the world.

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Sweating the Small Stuff

September 11, 2007 at 6:23 pm (Uncategorized)

0041-0605-2521-5741_TN.jpgI’ve been sweating a lot lately.

“Great,” I can hear you thinking. “Here I wanted to learn about sarcoidosis or raising a child when chronically ill, and this disgusting lunatic is writing instead about her personal hygiene – or lack thereof.” Believe me, I know how it sounds. Consider yourself lucky you don’t have to know what it looks like, or even worse, how it feels. Women aren’t even supposed to sweat, I know. They’re supposed to glisten. And I’m aware that perspiration isn’t the most couth topic. But trodden social standards notwithstanding, I need to write about the liquid pouring off of me at inopportune times.

For the past few months, regardless of the temperature outside, I have been sweating up a storm. It starts with a vague buzzing in my scalp or behind my knees and a feeling of being flushed (but not overheated). A couple of minutes after the tingling begins, I am literally soaked. Sweat pours down my face, and drips off my neck. My hair is damp on top, though the strands closest to my neck are sodden. My arms are wet, as are my legs. If I’m wearing pants, they’re stuck with sweat to my waist and legs. If I’m in shorts, the sweat pools at the tops of my socks. My shirts are marked with permanent rings. I’ve had such severe sweat attacks that I could wring out my clothes, just as if I had doused them in the sink. It’s gotten so bad that I’ve considered bringing spare shirts along when I have to be away from the house for a few hours.

If during the days I’ve left the feminine ideal of “glistening” in the dust about forty miles back, it’s only worse at night. I’ve had the night sweats associated with sarcoidosis on and off for over three years, but these latest nocturnal visitations are like nothing I’ve experienced before. I awake in the dead hours of the night, soaking wet, wrapped in sodden sheets. My hair has so much moisture in it, it looks as though I’ve washed it. Although I want to strip the bed, I’m loathe to rouse my exhausted husband in the middle of the night (and I usually haven’t sullied his side of the bed), so I dry myself off, change nightclothes, and try to fall back asleep on some towels covering the damp sheets.

At first, I assumed my hyperhidrosis was my fault. “It’s because I’m fat,” I concluded. But then my husband, Jay, reminded me that not every overweight person spends her days (and nights) in a portable sweat bath. “Besides,” he said. “You’ve lost weight, so why would you all of the sudden be sweating more?” Hmmm. Good question. Once self-loathing is removed from my paradigm, it’s tough for me to find a solution. Odd – and sad – how much faster and easier it is for me simply to conclude that any health problem is of my own making than to look for an external cause(but that topic is a separate essay) . I next blamed my elevated blood sugars, but those too have been in decline as of late – and yet the sweat still pours off of me.

On my most recent trip to the specialists in Philadelphia, Jay encouraged me to broach the topic of my constant and copious sweating with the pulmonologist. Her response to this new symptom was nearly identical to my other nebulous health problems that have arisen at the same time I’ve had sarcoidosis. In other words, the sweating thing is a bit of a mystery. She said it could be caused by sarcoidosis being involved with my sweat glands or being active in parts of my brain; it could be caused by prednisone; it could be exacerbated by blood sugar levels. Who knows? For now, we’ll monitor it, but if it worsens, more testing will be necessary. Does this sound familiar?

Regardless of whether or not the sarcoidosis gurus can come up with answers to my problems, I still need to explain them (or at the very least minimize them) to my three-and-a-half year old son, who takes in every detail I’d prefer him not to notice. Having a young child when ill forces me to normalize decidedly abnormal situations. Andrew, who has spent all but the first three months of his life sharing me with sarcoidosis, is accustomed to his Mommy’s medical trips. For him, it’s normal to leave home every three to six months to stay in Philadelphia, where various grandparents entertain him while his mommy disappears into the bowels of a hospital for tests. For him, it’s normal that I receive day-long infusion treatments, that I am perpetually sick with some infection, that he needs to wash his hands frequently, that I need more sleep than either his father or him, that I have had to take medication that makes me vomit and lay abed all day. After all the justifying and creative interpretation I’ve done, laughing off my pools of sweat as another bit of Mommy’s quirkiness wasn’t too difficult. “Geez, I am one sweaty Mommy,” I’ll say, if I happen to drip on him. I’ve even created an entire persona – a mock stern Russian mother by the name of Svetie Lana, who not only sweats a lot but also jokingly threatens to leave his toys on the street for “Papa Stalin.”  Although the foregoing description makes me sound like a freak bent on terrorizing my son, really, I’m not, and Andrew actually does shriek with laughter when Svetie Lana appears. He begs me to keep doing the Russian accent.

Since I’ve been able to convince Andrew that my sweating isn’t anything for him to be concerned about, I try not to let it bother me either. But, honestly, it’s hard to be sanguine about sweat attacks because, quite frankly, it’s yucky to be dripping and damp. In many ways, my sweating is one of my most significant health complaints right now – even though I know my concerns are more cosmetic than life-or-death in their scope. Ironically, the potentially fatal arrhythmias that accompanied my cardiac sarcoidosis never really bothered me that much. Of course, I stayed up nights worrying about dying, and I spent an inordinate amount of time (as I still do) listening to the pitter-patter of my heart in my chest. But in terms of day-day-day existence, excessively sweating irritates me more than the electrical dysfunction in my heart ever has. And while I frequently write about the “big” issues of Chronic Town – the whispers in my head that I’ll die before my son has grown, my mourning at the restrictions illness has imposed on my life, my fears of never getting well and having my son view me as an invalid – it is sometimes the seemingly trivial and often scatological concerns that make living with a chronic illness so challenging. And so isolating. In fact, I think it’s precisely these “little” things that doctors are willing to disregard – the sweating, the weight gain, the joint pain – that are the defining features of Chronic Town.

I’m hoping that the arrival of autumn will help stave off my sweating. Or perhaps as I work my way down on my daily prednisone dose, I’ll dry up a bit. Maybe losing more weight will help. I remain optimistic that Svetie Lana is not a permanent fixture in our home. If she is, it’s time for us all to start sweating it.

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Pre-School Daze

September 5, 2007 at 4:51 pm (Uncategorized)

This morning I left my son with a pack of ravening wolves.  Or maybe it was with a horde of slathering monsters.  Whatever they were, I callously ripped my hands away from three-year-old Andrew’s clutching little hands, as he struggled with every fiber of his being not to be left alone to his doom.  “Mommy, don’t leave me!” he shrieked, but I walked away from him, my fading footsteps mingling with the sound of his sobs.  God only knows what fate awaited him– perhaps he would be drawn and quartered, or flayed and boiled.  Or maybe, just maybe, he was in for a real doozy: finger painting, nap time in the blue room, and learning a new song about Sally the Snake.  Andrew has started school.

Yesterday was Andrew’s first day of pre-school.  Since I was scheduled for a three-hour infusion of Remicade at the hospital, my husband, Jay, had to drop off Andrew in the morning.  “I feel horrible,” he told me later, in a shaky voice.  “I had to pry his hands off me.  He was screaming and sobbing.  He kept saying, ‘Daddy, don’t leave me.’  I feel like someone has ripped my heart out.”  Luckily, the pre-school teacher was kind enough to call us a half hour later and reassure us that Andrew had stopped crying and was contentedly playing with other kids.  Better yet, when Jay picked him up in the afternoon, Andrew was happy as can be.  He was chirping about recess on the playground; he had his own hook to hang his brand-new backpack; he had made new friends.  “Whew,” I thought to myself, “I dodged that bullet.”  Before I had heard Jay’s account of the drop-off, I had been nearly doubled over with guilt and regret that my disease was making me miss yet another milestone in my only child’s life.  But the tremor in Jay’s voice made me wonder if I shouldn’t be happy that my sarcoidosis and its time-consuming treatments allowed me avoid a spot of trauma.

My mother had warned me that Andrew might have difficulty beyond the first day.  Still, I wasn’t expecting quite the level of terror and hysteria I encountered this morning on Day Two.  I figured that he would remember the fun of the previous day, and that he would let me leave him without quite so much sadness.  I was expecting a few tears, a sniffle, and maybe a mournful wave from the gate.  I was definitely not prepared for prying his damp hands from mine, nor for the level of genuine fear in his voice and his eyes.  Poor little fellow.

The mother bear within me wanted to scoop him in my arms and take him home for a day of snuggling in bed and reading.  I wanted to do what mothers (and fathers) do best: find the source of pain, give it a kiss, and tell him it would all be better.  But that’s not the right thing to do now.  He’s ready for the challenge of school.  He’s a smart and sweet little boy, and he has reached a point where he needs more structure and more socialization than he was getting at home with his parents and with Andrea, his wonderful nanny.  Plus, Andrea was ready for her own new opportunities.  She’s gone back to school and isn’t able to provide as many hours of child care as we need.  But knowing all this didn’t make it any easier to leave him there this morning, howling and calling for me.

For me, one of the most difficult aspects of parenting is walking away.  By nature, I am a do-er and a fixer.  If Andrew scrapes his knee, I am ready with antibiotic ointment, bandages, and magic kisses.  I’ll make up a zany story while I soothe the wound.  Usually, I’ll have him laughing before the adhesive on the band-aid has set.  Along with feeding him, making him brush his teeth, and reading to him, this care-giving role is the sine qua non of my definition of motherhood.  If he doesn’t yearn for a hug from me when the going gets rough, I’ll consider myself not to have carried out my self-imposed duties as a mom.  But I also know that I must impart to him the capacity to fix things for himself.  I can’t always rush in and magically make things better.  I can’t remove all sources of pain and trouble.  The world is awash with pain and trouble, and I won’t always be in it with a silly story and a band-aid. Not every sorrow is sooth-able, and not every wound is patch-able.  As we were packing to leave my parents’ house the other day, Andrew became very sad.  We have been visiting with family almost the entire summer.  We have been saying hello– and then goodbye–to aunts and uncles and cousins and grandparents at a dizzying pace.  This last goodbye to my parents was just too much for him.  He sat in my arms and sobbed at the sadness of parting from his beloved Grandma and Grandpa.  I held him, and I told him I was there with him.  I told him we would see Grandma and Grandpa soon, and I told him that missing them meant that he really, really loved them.  But I desperately wanted to distract him from his pain.  I wanted to dance a jig, pull out a new toy, stand on my head, do anything, to cheer him.  I had to force myself simply to hold him and quietly be by his side in his pain.

When I picked up Andrew from pre-school this afternoon, he was happy again.  He showed me the special hook for his backpack and the lunch room where he eats with his new peers.  He’s made new friends already–two boys named Keenan and Austin.  “See ya tomorrow,” he said jauntily to the teacher as we headed to the car.  The tears had dried, and he seemed a totally different creature than the sobbing boy I had left in the morning.  Nevertheless, I have a sense that we will repeat the goodbye drama tomorrow morning.

I half wish I could grow callouses on my heart, so that hearing my son sob didn’t feel quite so much like being eviscerated.  It’s the same impulse I beat back when I want to eradicate any pain or difficulty from Andrew’s life, rather than watch him suffer.  Being sad–feeling such intense pain– is crappy.  But it’s living.  If there’s one lesson that I’ve carried away from three years in chronic town, it’s that life hurts.  But all it takes is one doctor carelessly mentioning your mortality to make you realize that the hurting and the struggling are everything, that you would withstand anything for more living.

As Andrew and I quietly chatted on the way home about his day, I realized that my three-year-old son had a powerful lesson to teach me.  Here I was, all caught up in the parental wisdom I could bequeath to him, when he had his own message for me.  Like other young children, Andrew lives totally in the moment.  When I dropped him off in the morning, he felt like his world was ending, like he was indeed being left with slathering monsters, and he acted in keeping with this by yelling his head off.  After he realized he was fine, that school was actually fun, he was excited and chipper.  Both of these realities were absolutely true for him in the moments that he experienced them, even though they were contradictory.  For him, being left at pre-school was a terrible trauma and it was actually a pretty good day.  He can hold two opposing truths at once.   Unlike me and the rest of the adult world, he didn’t need to eliminate one mode of being and feeling for the sake of consistency.  What Andrew was showing me was the possibility of embracing contradiction within my own heart.  Living hurts terribly and living is pretty fun.  Being sick has taken me away from key moments in my son’s life and being sick has opened my eyes and made me a more present parent.  Watching my son grow up is awful and watching my son grow up is exciting.  You get the drift.

As other residents of chronic town know, it’s tempting to deal with the swings of sickness by shutting off feeling.  Before we left for Philadelphia and medical appointments, I had anesthetized a good seventy percent of my emotions.  Every day brought more bad news of infection, high blood sugar, resurging disease, broken bones.  I could not stand any more disappointment, any more sadness at my flagging health.  Maybe it was our vacation, maybe it was getting a plan from my doctors, maybe a slightly lower dose of prednisone is making me saner.  Whatever the reason, I am re-committed to hurting.  I am also re-committed to happiness.  I’ll show up for my life every morning, even if I see monsters and I need to kick and scream.  I’ll try to keep steady when the monsters become my teachers, when the sadness morphs into recess and then back into sadness again.  If Andrew can do it, so can I, particularly if nap time and snacks are part of the deal.

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