Bare Eyes

Tomorrow my eyes will be examined. The plaquinil I take for lupus can damage my eyes. It probably won't. But it could. And the birth control nuva-ring I had in probably wouldn't cause clots in my brain. Probably won't. But it did.

The eyes have it. I crochet a hat for my dad tonight. It's all black yarn as he requested--thin to fit under his bike helmet. I don't tell him that my mom used a hat I knitted her to fit under her bike helmet. They don't talk much anymore after the divorce a few months ago. The woman at the yarn store next to the laundromat where I did eight simultanous loads of laundry told me that black yarn is hard to work with, "hard on the eyes," she said, "but you have young eyes, so you can't use that as an excuse." No, I can't. I don't think the medication has damaged them. I will spend three hours at the opthamologist tomorrow to find out for sure. My eyes see clearly now.

Even with the rain gone. I thought I could make it when the rain was not gone. I thought I could see clearly when Jane was here playing Johny Cash and watching me cut plastic bags into plastic strips to knit into another type of bag. And when we ordered pizza and the delivery boy showed up soaking wet in the rare Southern California downpour. For a few moments I saw clearly. With the rain not gone.

I won't let anyone love me.

I get prickly and difficult inside and make excuses at the first glance of interest, "It probably won't work out anyway because of my job or my illness or my body or his love of video games or a million other reasons we'd discover if we started talking about anything real. Besides I don't want it anyway. So there."

I text Steve as I'm reading Les Mes--the part where Marius and Cosette are in their first throws of innocent and uninterrupted adoration--I tell him I can bear illness and death and sorrow, as long as I'm allowed to not bare my soul.

Seeing him today reminded me how lonely I am. How lonely I try to forget that I am. How I tell myself I don't want it, perhaps because I'm afraid of the risk, perhaps because I'm insecure, perhaps because I don't want to dissapoint anyone who I might be able to love, perhaps because I've had my share of hurt and because I expect more than my share of understanding, perhaps because I don't always love myself, and why then would anyone else love me. How could they? How at the end of the day, I sleep alone and tell myself that it's better that way. I sleep better that way. I don't have to deal with the love part or anyone snoring. I tell myself it's better that way.

I lie to myself, and tell myself it's better that way.

Sunbeams January 2008

After twelve years of therapy my psychiatrist said something that brought tears to my eyes: “No hablo inglés.”
Ronnie Shakes

Depressed? Of course we’re all depressed. We’ve been so quickly, violently, and irreconcilably plucked from nature, from physical labor, from kinship and village mentality, from every natural and primordial antidepressant. The further society “progresses,” the grander the scale of imbalance. Just as fluoride is put in water to prevent dental cavities, we’ll soon find government mandating Prozac in our water to prevent mental cavities.
M. Robin D’Antan

One loses the capacity to grieve as a child grieves, or to rage as a child rages: hotly, despairingly, with tears of passion. One grows up, one becomes civilized, one learns one’s manners, and consequently can no longer manage these two functions — sorrow and anger — adequately.
Anita Brookner

He . . . treats his emotions like mice that infest our basement or the rats in the garage, as vermin to be crushed in traps or poisoned with bait.
Marge Piercy

Why is it that people who cannot show feeling presume that that is a strength and not a weakness?
May Sarton

No matter what you’re feeling, the only way to get a difficult feeling to go away is simply to love yourself for it. If you think you’re stupid, then love yourself for feeling that way. It’s a paradox, but it works. To heal, you must be the first one to shine the light of compassion on any areas within you that you feel are unacceptable.
Christiane Northrup

Don’t look forward to the day you stop suffering, because when it comes, you’ll know you’re dead.
Tennessee Williams

This body that we have, this very body that’s sitting here right now in this room, this very body that perhaps aches, and this mind that we have at this very moment, are exactly what we need to be fully human, fully awake, and fully alive. Furthermore, the emotions that we have right now, the negativity and the positivity, are what we actually need. It is just as if we looked around to find out what would be the greatest wealth that we could possibly possess in order to lead to a decent, good, completely fulfilling, energetic, inspired life, and found it right here.
Pema Chödrön

If my life were not a dangerous, painful experiment, if I did not constantly skirt the abyss and feel the void under my feet, my life would have no meaning and I would not have been able to write anything.
Hermann Hesse

During a recital in Berlin, Andrés Segovia’s guitar was heard to emit a loud cracking sound. Segovia rushed offstage and, cradling his instrument, kept repeating, “My guitar, my guitar.” It was soon learned that the man who had built the guitar had died in Madrid at the exact moment in the concert that Segovia’s guitar had split.
Bartlett’s Book of Anecdotes

If you’re really listening, if you’re awake to the poignant beauty of the world, your heart breaks regularly.
Andrew Harvey

You think your pains and heartbreaks are unprecedented in the history of the world, but then you read. It was books that taught me that the things that tormented me were the very things that connected me with all the people who were alive, or who have ever been alive.
James Baldwin

Many people feel guilty about things they shouldn’t feel guilty about, in order to shut out feelings of guilt about things they should feel guilty about.
Sydney J. Harris

I like the snot to run a little, the tears to accumulate a bit before I reach for the handkerchief. Then I know I’m really crying. Crying just isn’t crying unless it’s messy.
D.H. Mondfleur

No amount of fine feeling can take the place of faithful doing.
William Barclay

It is said an Eastern monarch once charged his wise men to invent him a sentence to be ever in view, and which should be true and appropriate in all times and situations. They presented him the words: “And this, too, shall pass away.” How much it expresses! How chastening in the hour of pride! How consoling in the depths of affliction!
Abraham Lincoln

When you are sorrowful, look again in your heart, and you shall see that in truth you are weeping for that which has been your delight.
Khalil Gibran

At least I have not been run over by a jeep

I heard the following story on the news the other morning. When I texted it to one friend he said she must have had a sinking feeling about that. Another friend said you don't hear that every day and asked how I was. I wrote back, " I have't been run over by a jeep."

Some days that's all you can hope for. Although lately days in pediatric cardiology clinic and my continuity clinic have been much better than that. Way beyond just escaping a jeep, I talk with patients and feel sometimes competent and always find some way to help, even if it is just letting the trying to recover alcholic "bend my ear," as he calls it. I told him not to feel guilty about it; and to do his best every day. "You just take it one day at a time and do your est with every moment you are given. And be gentle with yourself when your best consists of barely hanging on," like I told my friend in LA.

Sunbather Accident

Fresno, CA: (Jan-21-08) Sarah Bouvet, a 24-year-old woman, brought a lawsuit against the city of Coronado, after she was run over by a lifeguard truck while sunbathing on the beach in 2005. The suit stated that as a result of the accident, Bouvet was hospitalized for two days with injuries to her lower body after the right tires of a lifeguard's truck ran over her as she lay on her stomach near the Hotel Del Coronado. Following her recovery, her legal counsel claimed she still had minor residual physical and psychological problems. Records show that her lawsuit sought monetary compensation and a change in the city's lifeguard practices. As part of a settlement reached, sources confirmed that the city of Coronado has paid $141,000 to settle the lawsuit. [FRESNO BEE: SUNBATHER ACCIDENT]

Child's Pose

In child's pose I smell the seaweed
As my nose hovers milimeters above the grains of sand
And my toes spread into the gritty earth.
Between my legs I see broken seashells.

I woke up happy today.
I don't know why
But I'll take it.

Perhaps because of the miso soup and sushi
With Jane and Doug last night.

Perhaps because of the beautiful man who gave
Jane and I whiplash as we turned to notice him.

Perhaps because I laughed and it was easy
To remember how to interact.

Perhaps because my cousin Chad called last night
And we imaginied and laughed and it too was easy.

Perhaps because Jean ValJean and Cosette are safe
For now.

Perhaps because I ate chocolate
And silenced the guilt.

Perhaps because I had dreams
I don't remember.

Perhaps because my kitchen floor gleams
From the manic prednisone cleaning.

Perhaps because I found papers
I thought I'd lost.

Perhaps because the sun is shining and the birds sing.
Perhaps because today is a day.
And I am alive.

October 2005 Sunbeams

The sun shines and warms and lights us and we have no curiosity to know why this is so; but we ask the reason of all evil, of pain, and hunger.
Ralph Waldo Emerson

If we will be quiet and ready enough, we shall find compensation in every disappointment.
Henry David Thoreau

That some good can be derived from every event is a better proposition than that everything happens for the best, which it assuredly does not.
James K. Feibleman

Nothing bad’s going to happen to us. If we get fired, it’s not failure; it’s a midlife vocational reassessment.
P. J. O’Rourke

Oh, my friend, it’s not what they take away from you that counts. It’s what you do with what you have left.
Hubert Humphrey

Since the house is on fire, let us warm ourselves.
Italian proverb

I know God will not give me anything I can’t handle. I just wish that He didn’t trust me so much.
Mother Teresa

I bear a little more than I can bear.
Elinor Hoyt Wylie

Perhaps this is why it is man alone who laughs: he alone suffers so deeply that he had to invent laughter.
Friedrich Nietzsche

Joy, happiness . . . we do not question. They are beyond question, maybe. A matter of being. But pain forces us to think, and to make connections, . . . to discover what has been happening to cause it. And, curiously enough, pain draws us to other human beings in a significant way, whereas joy or happiness, to some extent, isolates.
May Sarton

Sorrow has its reward. It never leaves us where it found us.
Mary Baker Eddy

I read about a man who’d been sentenced to die, saying or thinking, the hour before his death, that even if he had to live an ocean somewhere high up on a rock . . . with all around precipices, an ocean, an endless murk, endless solitude and endless storms — and had to stand there, on those two feet of space, all his life, for a thousand years, eternity — that it would be better to live like that than to die so very soon! If only he could live, live, and live! Never mind what that life was like! As long as he could live!
Feodor Dostoyevsky

If you break your neck, if you have nothing to eat, if your house is on fire, then you got a problem. Everything else is inconvenience.
Robert Fulghum

How can they say my life is not a success? Have I not for more than sixty years got enough to eat and escaped being eaten?
Logan Smith

Some of the world’s greatest feats were accomplished by people not smart enough to know they were impossible.
Doug Larson

Do not free a camel of the burden of his hump; you may be freeing him from being a camel.
G. K. Chesterton

I took a deep breath and listened to the old bray of my heart. I am. I am. I am.
Sylvia Plath

The best years of your life are the ones in which you decide your problems are your own. You do not blame them on your mother, the ecology, or the president. You realize that you control your own destiny.
Albert Ellis

The world keeps ending but new people too dumb to know it keep showing up as if the fun’s just started.
John Updike

Heart Fillings

The ritual filling of the purple pill box occurs every 7-8 days. I had this morning off and I’d taken my “T” meds yesterday morning so the filling happened this morning, “W”. I’m back to cutting the 5 mg prednisone pills into quarters. I think to myself that it might be the same amount of medicine if I just licked them a few times. The little pieces of devil are tiny. At my rheumatologist’s appointment last week, he said I’d gotten too eager with my self-designed prednisone taper and wanted me to take 8 mg instead of the 7.5 mg. But I’m trying to set up mail order pharmacy so I can get three months supply at a time and they are taking a while to get the 1 mg tablets mailed to me. So I slice and dice with my super sharp pill cutter. I try to convince myself it is cool to have a pill cutter and a trendy purple pill box. It’s not cool.

I also started taking bid hydroxychloroquine—“bis in die”—latin for twice day. I suppose it is fortunate that I already had to remember my evening dose of vitamin K to balance out the coumadin, but the twice daily dosing still makes it harder to remember and plan ahead for taking meds along on long call shifts. Ah, the life!

One of the attendings in pediatric cardiology clinic talked yesterday about how much he likes one of the rheumatologists. “It almost makes me with I had a rhematologic disease,” I overheard him say to the fellow. That still stings. I forget about it for a while, but comments like that and I remember. At its worst it’s like waking up the morning after someone you love has died. In those first hazy moments, you don’t remember, but then the awful reality comes rushing back and you just want to fall back asleep until the pain abates—or maybe forever.

“You don’t want a rhematologic diagnosis,” I look up from the heavy cardiology text book on my lap that I read between patient visits. I haven’t told them about my lupus. I get tired of talking about it. “I said ‘almost,’” he replied with a light-hearted grin and turns back to the fellow. “Which one would you have?” the fellow asks him, “Arthritis? Psoriasis? You should have psoriasis on your legs. You always wear pants so it wouldn’t matter that much.” He retorts that he does wear shorts when he’s not at work; he surfs and wears trunks then.

I’ve been wearing skirts to work more because my pants are still tight despite running and working out a couple times a day and fretting over my prednisone-increased appetite and weight. It’s good I don’t have psoriasis on my legs—the swollen arthritic knees are easier to conceal.

These past few days I have enjoyed cardiology clinic; I am learning a lot. I can hear murmurs that I could not have heard before. Another of the attendings reviews a thorough cardiac exam with me and tells me that the med-peds residents typically have better accusatory skills than the categorical pediatric residents. I hear them more and more accurately, and work on translating those noises into diagnoses and treatment plans.

We talk a lot about ventricular septal defects throughout the day. It is a hole between the two bottom chambers of the heart and the most common congenital heart abnormality. In one clinic day I see it in many of its stages. We have a baby come in with a classic murmur of a small VSD—holosystolic, harsh, best heard at the left mid to lower sternal border. A four year old Hispanic boy comes in with a history of VSD and a loud murmur, “solpo,” but he also has a fever which makes the sound louder than when he feels well. We will see him back in a month when he’s no longer sick. I listen to an older child who has the blowing sound only through part of the filling cycle of her heart beat instead of the whole cycle--nonholosystolic. The muscular part of the septum between her ventricles closes off the hole for part of the beat which is why I don’t hear the murmur throughout systole. We look at another child’s ultrasound of the heart (echocardiogram) that shows one of the valves covering the hole for part of the cycle; this will sound nonholosystolic as well.

One eleven year old girl who comes in pouring over her book report on “Where the Red Fern Grows” and in a hurry to get to her soccer and then her cotillion classes has no murmur any more. I listen carefully, making sure I don’t hear it. Her heart sounds normal to me. Lub dub. Lub dub. No lub-whoosh-dub. Not even a soft one. I ask her if she wants to listen. She looks at me with disbelief, “Really?”
“Sure,” and I put my stethoscope in her ears pointing the right direction for her to listen. When I do this, kids get a sort of trance-like look on their faces—lulled by the beating of their own hearts. Intrigued and soothed at once. I think it might be a reminder of their time in the womb when they could hear their mother’s heart and a simultaneous realization of their developing autonomy. This young woman loved it. I took off my stethoscope and she had forgotten about the book report and plans, “That was so cool! I’ve always wanted to do that! Wow.” Her mother smiled and told me I’d just made another doctor.

I went to present her to one attending, but Dr. Seltzer caught me first—the one who “almost” wishes had had a rheumatologic diagnosis. He had an interesting patient for me to see with him. I remind myself that it usually is not good to be the “interesting” patient. And in this case, it does not take one to know one. Though maybe it does take one to more fully empathize.

I quickly present the eleven year old to the first attending, who has been teaching me about VSDs all day, “Eleven year old female, VSD diagnosed as an infant, no cardiac symptoms, playing basketball, soccer goalie, no fatigue, on exam, no cyanosis, equal femoral and radial pulses, murmur has resolved.” It would be a confirmatory test for me to see if he doesn’t hear the murmur either. He asks me if I want to go with him to see her, but I choose to head in with Dr. Seltzer and his “interesting” patient instead. I would find out later that he agreed with my exam. “Diagnosis: closed VSD,” he scribbled on the billing sheet before dictating the visit.

I come in part way through the history. The baby is largely covered in the stroller but looks about two weeks old. The baby’s mother is overweight beyond the normal post-partum physique and I compare my body habitus to hers. Many people struggle with their weight; I’m not alone in that; I’m not even alone in having prednisone make it harder. Sometimes those thought bring comfort, sometimes not. When I went for a mid-day post 30 hour work shift jog on the warm Sunday beach day everywhere I looked I saw thin couples. The arthritis in my knees started hurting despite running on the soft sand and I walked home hanging my head and suppressing frustrated tears. Frustrated with this disease and frustrated that I cared so much about how I looked and frustrated that it made me feel like this longest non-relationship period of my adult life may still stretch far into the future.

Back to cardiology clinic, though. The baby’s father, a thin bearded red-headed kind-looking man was there, too, adding to the history and listening attentively. When Dr. Seltzer later told them their baby’s heart had problems, he would cradle her gently and repeatedly stroke her bundled small left foot while acting brave and trying to ask the right questions.

Their little girl had three heart defects: supravalvular aortic stenosis, pulmonary stenosis, and coarctation of the aorta. The first of these and sometimes the combination of especially the first two make pediatricians suspicious that she may have William’s Syndrome, a genetic disorder of chromosome 7 causing people to have variable expressions of Elvin facial features with “cocktail personalities,” shorter stature, high calcium, mild to moderate mental retardation and an unusually well-developed sense of pitch. Dr. Seltzer drew the cardiac defects on a diagram of the heart and told them that she would probably need heart surgery. He then explained that the pattern of her heart defects might mean that she has William’s Syndrome. He told them gently and reassured them that his William’s Syndrome patients were some of his favorites; he told them it could be lucky that she has this chromosome disorder passed on from one of them; that William’s syndrome children are very special. We referred them to a geneticist to see if his suspicions were real. Their beautiful baby girl with the full head of hair was not perfect—or perhaps she became a different definition of perfect.

Just now I listened to an NPR story about a teenager with William’s Syndrome. He feels very lucky to have it because it defines him; he seems to feel he would not be himself without it. But there in the exam room with Dr. Seltzer, these two parents with their first child, could not be other than mourning. The mother would start crying discretely as soon as we stepped out to get them a handout. The father looked paler than usual beneath his freckles; his eyes were wide and veiled and protective. The repercussions of this 30 minute doctor visit would spill far beyond that day. Perhaps they would spread only over the next months as she had her heart repaired and the genetic test came back negative. Or perhaps the diagnosis would fill the years of her life, defining and shaping her future in a way different than either of young parents dreamed.

Dr. Seltzer had been right, though. She is an “interesting” patient. Maybe one days she will be interesting enough to fill her own purple pill box, too.

In the end, we will remember not the words of our enemies, but the silence of our friends.

Martin Luther King Jr.

Wait, Wait, Weight

I loath prednisone. Its latest torture is cushingoidizing me. Cushing’s diasease is when your body produces too much of its own stress hormone (cortisol) which does all of the awful things that prednisone does to you when taken exogenously. It redistributes fat in your body; it gives you “moon facies.” I hate that most right now. My cheeks are round. I feel trapped in a body that has betrayed me and now doesn’t even look like me. I avoid mirrors anymore—the first-born who used to love the camera—and when I glimpse myself I wonder for a moment who I see. Because that person doesn’t look like me.

I’ve taken the prednisone since before I was diagnosed with lupus and blood clots. The neurologist recommended it first as a treatment for possible vasculitis (vessel inflammation) in my brain. They started me with a “burst.” 60 mg daily. They didn’t tell me about the mood swings. It amplifies everything. The highs become crazy manic rolling on the floor yammering away about nothing, or scrubbing the outside walls, or baking long into the night. The lows become tear-filled hours alone worrying about how to get through this, or thinking about mistakes I once made, remembering forgotten regrets. Full nights of emptinesses. They didn’t tell me about that. But now I know.

I know also about my face looking rounder. My cheek bones disappearing into the flesh that accumulates where it never was. I don’t like to meet new people anymore. I don’t feel like myself. I don’t look like myself. I don’t know this self. I don’t want to be this self. I want to be even-tempered and joyful and thin and active. I don’t want to have to worry about being in the sun when I go sailing with Jane on New Year’s Day. I don’t want my knees to hurt every time I start to get run down. I don’t want my friends to tell me they “know” what I’m going through. I don’t want to be buried yet.

My bones are probably not in the best shape either. I’ve taken the wonder devil drug for over seven months now. It thins bones. And skin. But it increases appetite and makes you gain weight.

And it’s not dosed for a resident’s schedule. Your body has normal ups and downs of cortisol through the course of a day, but extra prednisone overrides all of that. It masks your own fluctuations and gets you through a day (sort of) but then doesn’t last the night, which is a problem on thirty hour call shifts. I try to taper and I flare so I go back up on the dose. I haven’t been able to get below 10 mg daily since I started taking it. For a while I cut the 5 mg tablets into quarters and took 11.25 mg which is a ridiculous dose—no one goes to two decimal points on their prednisone dose. But at 12.5 mg I acted crazy. And at 10 mg it took all of my energy to get out of bed and the brain clot-feeling headaches came back.

I stared at my round cheeks the other day, after I’d struggled to get on pants that used to fit, and I let my tears roll down those foreign full cheeks long into that night as I reviewed this last year of my life. Fretting over every dark thought that seems exponentially worse in the wee hours of the morning: my lupus, my parents’ divorce, medical bills, work on Christmas, my stolen car, my new car payment, my lack of funds, my brain clots, far away family, friends I’ve hurt or lost, a lost stylus, a clinic patient with breast cancer, far away friends, lack of enough knowledge, loneliness, weight gain, empty bed, lack of time, shape-shifting future.

Even now, by the light of the computer screen, the list doesn’t seem as bad as it did that night. It still brought back tears, but they’ve dried already. It’s very warm in my apartment tonight. For that, I’m thankful. I’m knitting up my worries again, into caps and scarves. I live in a beautiful place. I ran along the water today. Overall, my body actually works pretty well most of the time—compared to a lot of bodies I try to treat. My brain works. Bryce is in town. I have missed him. I have wonderful friends. I still feel like I’ve misplaced my spark. I can’t find that happy thought that lets me fly with Peter Pan and Wendy. I’ve ridden these waves enough to know it will turn up. In the meantime, I try to eat less. And I reduced my prednisone to 7.5 mg. I hope I don’t flare.