The essense of all beautiful art, all great art, is gratitude.
~ Friedrich Nietzsche

Gratitude Here and Now

Yesterday I had another doctor's appointment. Our team was on call (which means admitting patients if any need help) but it was quiet so I got away for a while to see my neurologist. The first thing he did was apologize for the neuroradiologist who told me I was on the wrong medicines and that he would go into my head and pull out the clots. Apologize profusely and repeatedly and said if it were anyone other than the person it was (ie a neurorads fellow or resident instead of the director) he would try to get him fired. Yikes. I work with these people. But when I told him who it was he said this doctor was old and had been there forever and thought everything he did or said was right even though it was based on little to no evidence. Little to no evidence.

Dr. M, my neurologist, was livid that I had been told that I should get the clots removed mechanically. And Dr. H, my internist, call the radiologist, "full of shit." They both felt badly about the misinformation I had recieved and that had stressed me out so much I flared again. I do have a good team of doctors, who care about me immensely and try very hard to get me through all of these changes--physically, and mentally as much as they can. The mentally, I'm more in charge of; that makes it much harder. I find it hard to look at sometimes--in its entirety.

Dr. M went over my MRI with me and showed me that it is actually better! I have one important brain vein (the straight sinus) that has at least partially opened back up whereas it was entirely clotted off before. The inferior saggital sinus that is supposed to drain into the straight sinus is still entirely blocked off or was never there; and my transverse sinuses are less than gigantic, but the overall drainage seems to be adequate. The coumadin only helps clots from forming; it's my body that has to clean up the ones that already formed. He also said I probably bought myself a lifetime supply of coumadin therapy (except if I get pregnant because it makes babies bones form wrong--I'll have to do two lovenox shots a day if/when that happens). I figured I needed life-long anticoagulation; and now, stopping the coumadin would worry me, too. Every time I get a headache I worry I'm starting to stroke again. And he said this shouldn't affect my ability to process information. My thinking should be clear as long as I'm healthy and not flaring and not stressed out by radiologists. So many caveats to my existence now--but I suppose everyone has some of their own.

So far this month on wards at the VA, I am managing okay. We've only had one overnight call so far and those are usually the problem for me. I'll have another on Sunday. But in between those I'm working 12-14 hour days with just one day off in the two week stretch. Normally I would work four 80 hour weeks in a row, but they switched my schedule around so I work only two. That should help. Somewhat. The prednisone still makes it hard to sleep. And the thoughts about everything I forgot that I should know about my patients keeps me up hours after that (until I started taking medicine for that, too). "Did I order labs for the morning?" "Why is he anemic?" "How come his sodium keeps falling?" "How should I respond the next time my antisocial personality disorder patient calls me a liar?" "Why didn't I know the answer to that question when the attending asked?" "Where can I find that information?" Etc. etc. It's not all the medicine part that stresses me out. It's everything; it really is too much--for anyone.

Fortunately, my attending this month is fabulous. He's an infectious disease specialist; and he'd talked with me some about my illness before we started this ward shift, "Let me know if I can help," he said. And he means it. Today I went to take him a lemon bar after everyone else had gone home (I'm still baking like crazy trying to calm myself down). He accepted and then stood up and looked closely at me, "How are you doing?" I told him a little about the sleep problems and the prednisone and how hard it was to deal with mentally and about the changes in my MRI and that I keep considering other options. He said that is probably a good idea: other options with better hours. He's suggested pathology when we talked before. I like path, but I also like patients. He said I was doing well; that I care about the patients and am enthusiastic about medicine and that I seem to know my stuff and will only get better. Only get better. In more ways than one, I hope. He also said he thought I was a very brave woman. I think he meant brave to keep going, in spite of the lupus and the strokes and the clots.

People have called me "superwoman" through this. Others have said that I'm either a hero or a fool. Aren't they sometimes the same thing? Maybe I'm both. Maybe neither. Maybe I'm just doing what I can with this life I've been given, knowing now more than ever that it is indefinably finite. I don't know when all of this will end. All I know is what I can do with today. Hopefully tomorrow. Hopefully many days after that. But I don't know that for sure. No one does. The termination of here is more palpable to me than before. It makes me appreciate the here and now.

It makes me want to visit my WWII Navy vet who served on a submarine. He is featured in the veterans' calendar from last year and was proud to show me. He talked about illegal immigrants, too. I may not agree with his politics, but he is a remarkable man. This morning he told me a story about how his eyes used to be so good that he could see a boat on the horizon before any of the others or the electronics could detect it. "They're signalling to us," he told his captain. "They're firing at us!" And his submarine turned around. Perhaps he saved those men from dying that day. Lives change in instants like that. In the heres and nows that have been--and can be.

The vets spend more time thanking us than any other patient population. I updated the far-away brother of my liver disease patient on the phone the other day and he spent minutes thanking me and apologizing for taking up my valuable time. "It's my pleasure," I told him over and over. It is a pleasure to talk to the people who know and care about the patients you only meet in passing, sometimes as the candle of their existence flickers. That's where the humanity enters to make medicine more than science. That's where all the effort and learning and trying meet something that really matters.

Another of my patients wrote me a card that he gave me when I saw him first thing in the morning and told me I could read later. Just getting that card was the highlight of that day. The rest of the day was pretty awful. I came home a complete wreck and cried when Joseph and Jane so much as asked me how I was. The day had been too full of new patients and no time to get everything done and both I and the other intern had to go to clinic so we had only five hours to finish easily 10 hours worth of work. And Keith's package I'd mailed to him from Spain was wrecked. It was a terrible horrible no good very bad day--that day.

I didn't remember my patient's card in my white coat pocket until I got home, tried unsuccessfully to sleep off the frustration, only making it worse, and cried some more. In it, he said he had been in many hospitals, but never had it had such an enjoyable time as with me taking care of him. He said he'd learned a lot (we'd made a new diagnosis of type two diabetes for him and I spent time explaining what that meant for his lifestyle and changes to make) from me. And that he wishes that I were his doctor. Very high praise. I cried again. This time with elements of gratitude and relief mixed with the exhaustion and feelings of ineptitude.

"When our perils are passed, shall our gratitude sleep?" (George Canning)

I remain grateful to be alive--almost every day. I am grateful to find my car where I left it. I am grateful to have learned about iron storage today from our attending. I am grateful to be able to try to help people. I am grateful I finished work before the sun went down so I could stop and walk along the ocean and watch the sun setting in all its red and orange and pink glory over the ocean. I am grateful for where I live. I am grateful that two of my favorite people called tonight (even though I missed the calls; I'll call them back). I am grateful that I tried a new recipe last night (not baking!) with chicken and onions and red peppers and balsamic vinegar that is very fast and tasty. I am grateful that I have bananas that are almost soft enough to make bread or biscotti. I am grateful I found a Whole Foods market right by the VA. I am grateful I have Saturday off. I am grateful for a yoga class in 30 minutes. I'd better start getting there, in fact. I hope you have many things in your life for which to feel grateful.

Banana Bread Instead

Call was long.
I'm just now going to bed.
Have been baking instead.
Trying to turn off my head
And silence the dread
I felt when my thoughts fled
Or my liver patient bled.
So I bake banana bread.
Instead.

I'm very tired. Very tired.
Uninspired.
Short wired.
Mired.
Retired.


So I made cranberry sauce
lemon bars,
and invented lemon rosemary biscotti.

It worked. I feel better.
Less bothered by the histrionic patient who quizzed me before I left after being up dealing with cross-cover issues and my new patient all but two hours last night.
Visited Jane. Joseph visited.
He had a rough four paramedic days, too.
He ate lemon bars and banana bread.
Instead.

I hope I can sleep now.
Instead.

I GOT MY CALIFORNIA STATE MEDICAL LICENSE TODAY!!!!

(You get your license after med school and all three USMLE licensing exams, the last of which you cannot take until you have completed your intern year, sooo you can't apply for your medical license until after that. I finished intern year. I took the two day exam. I passed. I applied. And today the mail came. So now it is official, official!!!)

Thanksgiving: Rice and Beans from the Drivethru at Roberto's

A memorable Thanksgiving, involving walking through a Mexican drivethru for dinner. I kid you not.

Mom and Bernie and I had planned on going out for a Thanksgiving dinner. Mom thought, in particular, that a fish place on the ocean would be open. I preferred an Italian place I'd been to a few months before. And our back-up was our favorite Greek restaurant. Nothing traditional, but the year had not been normal either, so it seemed to fit--the first year when my parents are not together, first holidays after Colin and Becky are married and living in the house they bought from my parents, first year with my lupus diagnosis, and Bryce can't make it home from New York so he planned on driving to Michigan with his girlfriend to see our extended family there.

I want to start by saying I feel extremely thankful for many things this year, having survived being high on the list. And many of my wonderful and unconditionally loving friends. Spain. My family. Lemons. My apartment by the beach. Visits from friends. The blue and white table cloth. Showers. Yoga. The gratitude goes on; I keep thinking of new things and adding to the list I started in my long-hand journal.

And I'm thankful that I got Thanksgiving Day off for the first time in two years. Once I'd slept in appropriately, I woke up, started my "thankful" list (which I might try to do more often than once a year; it recalls happinesses well), and decided to take a bike ride to the beach for some yoga. I invited mom to come along and by that time Jane had returned from Ben's where they'd started the Turkey and we talked about Thanksgiving memories and how we both tried to keep discontented or angry people out of our lives or create a protection against the ones we couldn't help but interact with. I have trouble with that still. Like when Sean was drunk (again) and yelled at me for not picking him up from the airport (even though I was at work and never agreed to do this) I felt oddly responsible and like I'd somehow messed up. Even now, I have to keep reminding myself that his anger is not about me.

Thanksgiving day here was beautiful. Beautiful! Sunny and warm and happy. We decided to ride our bikes over to a place that mom was thinking of buying for the family beach home (when she wins the lottery maybe?). As we're riding and ringing the bells on our cruisers and singing and chatting and crunching through fallen red leaves and laughing and wishing everyone happy thanksgiving, the smell of turkey and stuffing wafts out of every house.

The house mom has seen on the internet needs a lot of work, so that we didn't pursue that option, but she finds another few fliers of possible places. From there, we went by Ben's place to check on him and the turkey. I tried guitar hero for the first time and got booed off the stage. Oh, my breaking heart.

Straight to the beach next. I started to do my yoga routine with mom keeping up for a couple minutes, and Jane immediately into the corpse pose and rolling around barefoot in the grass. We felt like kids. Giggling and stretching and taking pictures and pinching ourselves to remind us that it is November and the waves are crashing below in full sunshine (don't worry, I had spf 45 on to prevent the flare). Yoga felt good as always. And I surprised myself by enjoying the company also. I love Jane and mom, but I usually like solitude during yoga. Teaches me to let happy people in more.

We all felt somewhat cold and tired by the time we'd finished so we rode back along the ocean to our apartments for snacks of crackers, cheese, smoked turkey, grapes, lavender biscotti, rosemary lemon cookies, ginger cookies and Jane's special tea ball tea. Yum all around.

After our snack and three-way chat, Jane left to visit some friends and mom and I had a chance to talk about a few of the changes in our respective social and physical situations in the past year.

Bernie showed up around 6pm wearing a sport coat and fancy shoes for our night out. I still hadn't showered so hurried to do that and get a little more spiffy myself. I wore the scarf Keith got me from Spain--reminders of more thankfullness. And then the great Thanksgiving Dinner Adventure of 2007 began.

Dr. F had recommended a restaurant down the street from my apartment: the one I could rarely find so drove up and down the amazingly quiet and rather darkened main street at least three times. I didn't find it, but got close. We found a great Spanish restaurant nearby--for another day. Closed for Thanksgiving.

I began to think this going out to eat might not be such a great idea. But, within walking distance of the Greek restaurant, we decided to assess our options there. Even from 500 yards away, we could see the darkened interior--closed also. "This was a nice walk!" I said.

We tried the fish place on the beach next. Found a great parking place and walked along to the rhythm of the waves to find that restaurant also dark and closed for the evening. Hmmmm. I offered the salmon in my freezer, and reminded them I was well supplied with home-baked goods. Maybe a home Thanksgiving dinner after all. We decided to drive a little more just because we were having so much fun listening to Jens Lekman sing about falling in love with a punk at the anti-war demonstration. Seven-11 was open. A few bars looked open but not busy and very TV heavy. I think Denny's was open too. And Roberto's taco place still had their lights on and cars moving through the drivethru.

After a couple more tours of that block, we parked to go inside Roberto's, but the door was locked. The drivethru window was open and the little metal box squawked, "May I take your order?" Keep in mind we are not in the car. And so ensued the decisions to get tacos or enchiladas? How much rice and beans? Did we want the horchata? Anything else? Chips? All done while reading the outside menu and bending down to talk to the little metal box on the side of the building. Mom and Bernie had to do the ordering since I was laughing uncontrollably by this point. And the men inside the restaurant chuckled persistently and spoke good naturedly in Spanish as they watched us, as Jane would say, "act like tools" outside. What fun!

Our order in, we stood outside the drivethru waiting for them to get it together. An SUV drove up with a surfing video playing inside and Bernie sidled up to it to watch through their back window. The owner of Roberto's came out to the take out window to explain that he had locked the door a couple hours earlier because someone came in and tried to rob them--at gunpoint! Scary stuff. We told him we were thankful everyone stayed safe. A drunk man came up to us as we got the bags of food and Bernie headed him off before he got too ugly.

Thanksgiving?!? Rice, beans, and tacos? We kept reminding ourselves and laughing.

We drove by Ben's place to visit with him and Jane and Bob. They'd had the traditional fare and were packing up the remains. They offered to share, but we had our feast in styrofoam so we drove back to my apartment to enjoy it on the blue and white checkered tablecloth with a bottle of Kenwood 2004 Merlot I found in my cupboards. And the cookies for dessert.

Not your traditional "Turkey Day" but a fairly fabulous celebration all the same!

I hope you enjoyed a holiday filled with gratitude, friends, laughter, and love.

Lavender

We shall not cease from our exploration

And at the end of all our exploring

Will be to arrive where we started

And know the place for the first time
~ T.S. Eliot, Little Gidding

I spent most of the other afternoon looking for fresh lavender, only “arrive at a place where I started and know the place for the first time.” Good thing lavender has soothing and relaxing qualities, because the journey was less than entirely peaceful.

Since I feel poor from Spain and since I want to spend all my time baking lately, and since the holidays have arrived, I decided to try to bake gifts for my friends, at least as part of the presents. Some of my closest friends live very far away (proof that closeness of souls does not require closeness of bodies), so I thought biscotti might travel well. This led to a hunt on Cooking Light’s recipe site (which has combined into MyRecipes.com which prints them out in great little 3x5 size if desired) where I found the five star-rated “Biscotti with Lavender and Orange” recipe. Perfect.

This pre-hunt occurred prior to the weekend as I felt the full effect of the 12.5 mg prednisone dose for my lupus-flare-brain-clot headaches—when I bordered on manic energy levels. I spent part of the next few days trying to calm myself down: yoga class, bike rides to the beach, yoga at the beach, soothing Aveeno lavender lotion, “Lavender Diamond” music from Chris, and lots of chamomile tea. I spent another part of those days trying to figure out where I might find fresh lavender for the biscotti which already had a wonderful aroma in the oven of my head. Trader Joe’s and Henry’s are within blocks of here so I checked both places on my way to and from yoga the other day. I found lots of lovely items which created visions of holiday kitchen goodness in my head: pumpkin, organic brown sugar, molasses, spices, eggs, bananas, etc. But no fresh lavender.

Today my continuity clinic was cancelled so I had a last minute gift of an afternoon off. What joy! I had more time to continue my search for fresh lavender, but first, a swim.

The clinic where I work is out east of the city in a rural area, which makes for an enjoyable and unique patient population. And on the way toward home is my favorite indoor pool (I have to stay out of the sun because it makes my lupus flare, too). Though I haven’t been swimming in almost two months, I stopped and managed to feel pretty good through ¾ of a mile. As I washed my hair in the gym showers, I noticed that my shampoo and conditioner are both organic lavender of some sort. I notice a theme here. Lavender was all around me, yet I kept looking for more—the fundamental lavender.

Like the scent of the gray-green leaves I sought, swimming relaxes me well. In the water, I hear no extra sounds. I hear only my breath. In, out, in, out. Some people get fancy underwater headphones to listen to music while they swim. Though I enjoy music, I like to leave it out of the pool. In that time, I breathe. I let my mind go in the space between the pushes off the walls. There also, I often arrive where I started, and experience realizations that seem so simple once uncovered as possibilities.

My mind wandered to earlier in that day, when I had another doctor’s appointment of my own. Finally, I got to see my primary care doctor while feeling good. I usually go to her mid lupus flare, crying and disheartened. Today, I smiled when she walked in the exam room. We talked about my mania with the prednisone; I told her I’d already dropped it back to the ridiculous (but seemingly workable dose) of 11.25 mg which requires me to cut the small 5 mg tabs into quarters. And, even with that, sleeping has become difficult. At night my mind spins off into memories and plans and worries for hours. She offered ambien initially, but I do better with clonapin so we can try that first. It seems silly to me to take medicine to treat the effect of medicine. Even this whole brain clot business started when I started messing with my body’s hormones. I sometimes wonder if my lupus would not have roared so loudly if I’d never taken estrogen. Medicine sometimes knows too little about too much; and too much about too little.

She and I both have concerns about my schedule for the rest of the year. These next few weeks look manageable; however, later in the year I lead teams of interns on the inpatient wards for 2-3 months in a row. That looks like trouble, especially given the fact that I have yet to make it through an entire four week on-call cycle since my hospital stay and diagnosis in May.

While swimming, I discovered that I don’t care how long this training takes anymore. I want to finish. Maybe I can spread out the difficult months. Maybe on the months in between I can work mornings in my continuity clinic and moonlight during evenings, as I have the energy. Because the whole getting paid issue would have to be sorted, but I see options for that. “Moonlight” shifts mean I basically work on a fee for service-ish basis. It remains only to see if the program can accommodate these pool plans.

Once out of the shower at the gym, with my wet lavender scented hair, I wondered if perhaps a different Trader Joes might have lavender. My timing on grocery shopping was perhaps a mistake. The store overflowed with pre-Thanksgiving day shoppers. And the people in the parking lot looked in less than the holiday spirit as I tried to get my car into and out of the tight spot on the corner. I remembered the word, “agoraphobia,” which means fear of the market place literally, but in psychiatry means fear of large crowds of people. I didn’t like the mayhem of the grocery market. I could barely get to the vanilla yogurt. People kept crowding in to get last minute canned pumpkin or sample the apple cider. And I nearly forgot to even look for the lavender. But when I did, no luck there either.

On the way toward home, I texted neighbor, Jane, to see if she knew where I might find fresh lavender. “World Market,” she guessed. I didn’t know where to find that store, so I called Joseph and woke him up from his mid-afternoon nap to find out that I’d already passed the World Market he knew. Since I saw traffic on the other side of the freeway, I didn’t turn around. Lavender, soothing as it may be, might not be worth the travels today. I was still trying to shake the displeasure of my extraction from the parking lot at the grocery store.

I regained peace, though as I drove toward home and the beach, (what’s lost is always found, and what’s found always lost, I find) and with it, regained motivation to find fresh lavender—my holy grail in those moments. Little purple flower chalices of peace and possibility.

And then, epiphany. I wanted fresh lavender. Fresh lavender. Why not look for the actual plant? A live plant with all the benefits of rejuvenation and quiet company built in. Why I had not thought of it before, I do not know. I did know I finally had the right idea, though. I could feel myself getting closer to my goal.

Now, where to find the plant? Lavender grows in abundance at the farm where I grew up. It thrives in the hot Northern California summer; I remember thinning it out yearly, the sweet warm fragrance wafting up from the trimmed branches and purple flowers past their mid-summer prime. It likely grows well here, too, in sunny Southern California. But my studio apartment measures much less than the size of our summer stock pile of home-grown hay we used to feed the horses and launch ourselves onto the barn rope swings. No room for a lavender garden at this stage of my life.

Yet, perhaps I had room for one plant. I remembered as I drove south that the Target where my neighbor Bob now works has a nursery. I could look for lavender there. And also pick up more of the Aveeno lavender lotion and get an orange peel grater so I could return Doug’s to him. Target arranges their merchandise in such a way that I find in nearly impossible not to find something else I cannot live another second without. This trip was no exception. I somehow ended up with more lavender shampoo, in addition to the eggs and bleach I remembered I needed. Still, once I made it to the nursery, it had only tiny Christmas trees everywhere. No fresh lavender.

Out of ideas and getting closer to home, I carefully drove out of the Target parking lot when something to the left caught my eye; a beam of sun shone down on it and climactic opera music started playing in my head. I do not usually feel this excited when spotting Home Depot, but this time was different. I could feel it. This time would not consist of wandering around the isles looking for the perfect nail type or next greatest tool with my Dad. This time I was alone and heading straight for the garden section. This time, lavender beckons. I could see its little purple flowers welcoming me, “You have found us at last,” they whispered, “We are home.” The blossoms keep a home for travelers. And wherever they grow, they create a home. “We are home.”

The garden section has its own entrance and own check-out stands. The poinsettias lined the front and the scent of fir trees greeted me again, but I walked quickly past them. I could see the rosemary and I knew the other garden herbs had to be near. Rounding the corner of the display I saw them, 12 inch lavender plants, on sale. Of course by this time, money hardly seemed to matter. When buying dreams, you don’t look at the price tag first. Beauty, however, did still matter. I wanted a beautiful dream; and the larger plants did not fit my vision of the lavender soaking up the sun outside my door, blessing all comers with its purple peace. I opted for the eight inch healthier-looking “Spanish/French Lavender” variety. There were also smaller ones which would have sufficed quite well for the original biscotti plan, but plans had expanded drastically since sorting through recipes.

By this time, I sought much more than a baking ingredient. I sought the journey. I sought realization that the journey is the peace—the man in front of me chatting slowly with the cashier or the woman sitting on the bag of potting soil with her two year old looking for winter seeds and even the woman shaking her head at me in the parking lot earlier—all shared elements of peace. If I could just open my eyes in the right light, fresh lavender grows all around.

I chose a brown and cream colored glazed pot which accented the sage green and muted purples of the plant. I placed the lavender in it and wrapped my arm around the bundle, carrying it like a child. I realized a couple days later, when I found the receipt, the cashier had accidentally charged me for only the pot and not the plant itself; I must have been too caught up in my lavender dreams to notice. I can try to fix it next time I go back. But, perhaps in the meantime this means what we look for is always already there—and the thing we truly seek we pay for on the road to attainment.

Chopping lavender for the biscotti that night, I chose the branches whose flowers had already begun to dry. I carefully measured the chopped fragrant leaves and grated the best of the fresh orange peel for the 14 hard biscuits I planned to create. I rarely measure quantities as carefully as I did then, but I felt somehow I needed to ensure I did this right. And I did.

With the blessings of the pool-found peace, and the soothing herb, and the struggles and insights about my new disease over the past several months, I did this right. The biscotti turned out beautifully. It has already soothed Joseph when he felt “in a mood” the night it came warm and still slightly soft out of the oven. And Jane came over to share some tonight after another of our neighbors, Sean, drank too much and became angry at the world again; she talked and I crocheted and listened as we left Sean to sort out his own peace. Instead, she and I laughed about her family planning “pickled bean raids” or playing “monster” in her sisters’ darkened Maine house.

The fresh lavender now rests soothingly outside my door; knowing nothing and everything. I kneel down and bury my nose in the blossoms when I get home from a long day of trying to figure out which antibiotics best suit which bacteria growing in my legless veterans at the hospital. “We are home,” the plant whispers to me again. “We are home.”

Even better than Lemonade

"When life gives you lemons, make lemonade." Or when you buy a giant bag of beautiful lemons at Costco, make three batches of lemon bars, a loaf of lemon bread, Greek lemon herb cookies, and put a lemon slice in every glass of water and lemon juice in every cup of tea. And, of course, share the lemons in their native state as well as all of their evolutions.

I continue to bake. Maybe it's the holidays, maybe it's the increased steroids and energy, maybe it's a nesting phase. I enjoy baking, and those around me enjoy it also, to varying degrees (usually 350 F). In addition to the lemon abundance, I made apricot spice bars, hermits and ginger cake. All of which have already become with the neighbors and the early Thanksgiving crowd at Loraine's last night.

Part of me feels like lupus is a whole bag of lemons. When I was studying about antibiotics today before I rode down to the beach for sunset yoga I got side tracked on the "SLE" links because of the hydroxycholorquine I'm taking. It said on this oh-so-reliable-internet-source that lupus in over diagnosed in the United States and that only 25% of people who carry the diagnosis actually have the disease.

Ah hah! A glimmer of hope? My sleeping dragon of denial wakes up from his nap and begins to sleepily snort fire again. Then I read the symptoms, of which you have to have four out of the eleven. And I meet criteria, plus my lab tests basically confirm it. Especially when I flare, my double-stranded DNA antibodies can't are off the charts--literally the machine at the hospital can't even quantify them. All it says is greater than 400.

Oh well. I'll just make lemon bars, cookies, bread, water, etc. Plus the lemons themselves are beautiful little orbs of sunshine yellow, especially radiant in the morning light. Perhaps the lupus is beautiful too, in a way, and when the light is right; it has made me think and wonder and reconsider and recommit and travel and see how loved I am and love more and give goodness away. Little balls of sunshine.

"What is to give light, must endure burning." This diagnosis burns deeply--and perhaps brightly.

Greek Lemon Herb Cookies
Bake 375 for 13 minutes

Recipe modified from Loraine’s original. I always use whole wheat flour, but feel free to alter that, too. Recipes were meant to be improved upon, like life. Oh, and for a long time I didn’t know what “zest” is. It’s just finely grated citrus peels. Zesty.

Lemon zest 4 tsp (two lemon’s worth), divided
Lemon juice 2 tsp (one lemon’s worth)
2 1/4 c. whole wheat pastry flour

1/4 c. toasted wheat germ
1 tsp baking soda
¼ tsp salt
1 c. butter or margarine
1 ¼ c. sugar, divided
2 eggs
½ tsp rosemary, dried or fresh (if fresh, use 1 1/2 generous tsp., finely chopped or squashed with mortar and pestle)

Preheat oven. In a small bowl combine ¼ cup sugar with ½ tsp rosemary and 1 tsp lemon zest, set aside.

Cream butter and sugar in a large bowl until fluffy. Scrape down sides of bowl. Beat in egg yolks, 3 tsp lemon zest, 1 tsp rosemary, and lemon juice.

In a separate medium bowl, combine flour, wheat germ, baking soda, and salt.

Gradually add flour mixture to butter mixture until well blended.

Shape into 1 inch balls and roll in the sugar mixture to coat generously (if desired, can use the egg whites to roll in first, but I found the sugar stuck perfectly well without the whites—honestly I just forgot to use it!). Place at least two inches apart on a greased cookie sheet. Flatten down slightly with your hand or the bottom of a glass.

Cook for 13 minutes, give or take, or until edges are just golden. Cool on wire rack and enjoy with friends, Greek or otherwise!


Jane came over when I was making these cookies tonight; she was crying because her boyfriend had not called or come by when he said he would--very uncharacteristic of him. I stopped mixing the ingredients just before the combine step and turning the oven on. We talked a bit. I didn’t know what to say. She cried. I sympathized. We agreed that boys can be confusing and that we don’t understand why they do things that are hurtful even when they seem as sensitive and thoughtful as her boyfriend. I thought there must be some explanation for his behavior. He usually is a great guy. He called while we talked and heard her upset and rushed over. She went down to meet him as he ran up to her studio feeling super upset that he’d upset her and running frantically around her apartment looking for her. I sent two lemon bars from an earlier batch with her for them to share.

She came back later after he’d left and things were okay again. She'd ended up mostly consoling him because he felt so bad for hurting her. By that time the cookies were coming out of the oven and she ate three!


The lemon bars are the old standby—the tried and true one that everyone loves (except Bob who doesn’t like lemons). They used to be my first boyfriend’s favorite and I remember making them for him even after we’d broken up, part of me thinking maybe I could bake my way back into his heart. I guess the way to a man’s heart isn’t always through his stomach.

Lemon Bars

1/3 c. butter or margarine
¼ c. granulated sugar
1 c. whole wheat flour
2 eggs
¾ c granulated sugar
2 tablespoons whole wheat flour
2 teaspoons. finely shredded lemon peel (zest!)
3 tablespoons lemon juice
¼ tsp baking powder
Powdered sugar

In a medium mixing bowl beat butter or margarine with an electric mixer on medium to high speed for 30 seconds. Add the ¼ cup granulated sugar, beat till combined. Beat in the 1 cup flour till crumbly. Press mixture into the bottom of an 8x8x2 baking pan. Bake in 350 oven for 15-18 minutes or just till golden.

Meanwhile, for filling, in a small mixing bowl combine eggs, the ¾ cup granulated sugar, the 2 tablespoons flour, lemon peel, lemon juice and baking powder. Beat or stir until combined.

Pour filling over baked layer. Bake 20 minutes more or till lightly browned around the edges and center is set. Cool on wire rack. If desired, sift or sprinkle powdered sugar over top. Cut into bars. Makes 20 bars.

Per bar: 97 cal, 4 g fat, 15 carbs, 1 g protein.


Joseph liked these, but his favorites are the Hermits. He ate almost all of them. As he was finishing the last one, he says, “These are healthy, right?” Well, they do have raisins. I made them when I was on a baking rampage and wanted something to make the house smell more like the holidays.

Hermits

½ butter or margarine
¾ c. packed brown sugar
½ tsp. baking soda
½ tsp ground cinnamon
½ tsp ground nutmeg
¼ tsp ground cloves
1 egg
2 tablespoons milk
1 tsp vanilla
1 ½ cups whole wheat flour
1 cup raisins (generous cup)
1/2 cup chopped nuts (I used walnuts from our orchard at home, also generously)

Grease cookie sheet and set aside. In a large mixing bowl, beat butter or margarine with an electric mixer on medium to high speed for 30 seconds. Add brown sugar, baking soda, cinnamon, nutmeg and cloves. Beat until combined, scraping sides of bowl occasionally. Beat in egg, milk, vanilla till combined. Bean in as much of the flour as you can with the mixer. Stir in remaining flour. Stir in raisins and nuts.

Drop rounded teaspoons(-ish) 2 inches apart on prepared cookie sheet. Bake at 375 for 9 minutes. Transfer cookies to wire rack and let cool. Supposed to make 36 cookies.

Per cookie: 79 cal, 4 g fat, 11 carbs, 1 g protein

I want to live!

“I----want----to----die!”

“Mr. Sylvester!” The nurse entered his hospital room with the computer on wheels, “You have got to calm down.” We could see him lying on his hospital bed with the covers discombobulated all around him. “I want to die!” he kept repeating emphatically. I could tell I and the rest of the infections disease consult team had witnessed only a small slice of what likely represented an entire pumpkin pie hospital stay of struggles between Mr. Sylvester and his 12-hour per shift nurses, “I’m not going to kill you,” today’s nurse insisted with astounding patience, “I know you need something for pain,” then she muttered in a less authoritative voice, “I’d put in the order myself if I could. The doctor isn’t calling back.”

“I want to die!” The old veteran kept yelling as we finished talking about possible reasons for bacteria in the blood of my patient in the room next door.

Mr. Sylvester and I could not share more dissimilar desires at the moment, “I want to live!”

Oddly enough, these words flashed upon me while I lay in the corpse pose at yoga tonight. I’d shown up late to class due to parking debacles and I always feel bad walking in late to a class of people trying to find their centers. I let that guilt go as the hour long class progressed. “No judgment,” repeated the instructor soothingly in talking about releasing our bodies as far as each person could go, “Focus on your intention for this time. Maybe it is just to stay with your breath. Maybe it is just to relax and let go of worry for a little while,” she demonstrated breathing rhythmically and audibly into her headset microphone. Inhaallle. Exhallle.

Somewhere between yoga plank and windmill and tree and triangle and happy baby and downward dog and cobra, I finally let go. Relaxing into the moment, I no longer worried about arriving late or crowding my classmate (who after class I discovered had barely contained herself from tickling my feet with a warm smile). I no longer worried about Mr. Sylvester’s desire for death. I let go of the guilt I feel for being sick and having my classmates have to pick up the slack for me. For those moments, I forgave myself. “We forgive ourselves, and each other; we begin again in love,” like we sang in the Jewish New Year song at church a couple months ago.

Today was my first day back at work in almost a week. It felt good to get back. I have had to increase my prednisone dose again due to the headache/knee pain/fatigue lupus flare that started while I worked in the intensive care unit last week. The increased steroids make me hypomanic and hypodepressed. It basically makes me almost hypo-bipolar with the rapidly undulating moods. I do not enjoy it.

I have channeled the hypomanic phase into baking and cleaning and decorating the last few nights. My neighbors love the lemon bars, spiced apricot bars, lemon bread, and hermit cookies that have been pouring out of my kitchen. The Christmas decorations are up and the lights add a nice glow to the place. As I put them up last night, trying not to worry about work today, I thought fondly of my sister-in-law who bought them for me last year. She surprised me by decorating my apartment while I worked 90 hours a week in the CCU over the holidays and had no time to think, let alone buy happy red bows with bells on them. Even with all of that done, I still felt waves of anxiety and despondency and called one of my ex-boyfriends who only threw me into another hypodepressed cycle. Then I decided to see if I could get some people to play board games with me. You see how I began to drive myself nuts. Some people live with that kind of energy all the time. I do not. That is not normal for me and I quickly begin to annoy myself once I’ve finished baking or cleaning or making phone calls.

I even tried taking some sleeping pills to calm myself down once my partner and I had won at Taboo and everyone had left because I had an earlier day the following day. No luck. I stayed up until almost 1 am trying to relax. I think “trying to relax” is a bit of a paradox. Relaxation is inherently lacking in effort. That is the whole point. It’s very Buddhist—just letting go. “Relax into that pose,” says our yoga instructor calmly, “Close your eyes and breathe.”

Finally, last night, I wore myself out and collapsed like a child does after a long day of exploring all of the new and wonderful things his body can do and experience in this big world. That is why toddlers often lose weight, by the way; they get too involved in life to take time to eat. I did not feel nearly as content as those toddlers, however. My mind whirled between anxiety and guilt until it spun itself into a sleep riddled with dreams of chocolate and men.

My tangible anxiety revolved around starting a new rotation the following day. And in the larger sense of going back to work still with the uncertainty that I could do it. My guilt centered around not being good enough to be a doctor and getting sick so much and having other have to fill in for me. When recognized and taken individually, both the anxiety and guilt become manageable and banishable. I know the rotations to come are achievable; I even look forward to the challenge of them, especially when I can remember to not take the feed back personally. My chief and program director ease my guilt by repeatedly and generously assuring me that the program can absorb the time I need to take off work—that the most important things are me and my health. And if this career is what I want to do, they will (and have already with my infinite gratitude) do everything they can to help me. Those thoughts bothered me last night, but the intangible anxiety and guilt really kept me awake. I could not console what I could not touch or name.

Fortunately, I decided after I watched a termite chew away at my windowsill for most of the day a couple days ago, I absolutely do want to be a doctor. I want to finish this training. I want to see my own patients in clinic. I want to learn as much as I can while I’m here and I want to share that knowledge and my gratitude. I want to live!

Even if it means I die. We live perhaps only once. Perhaps more, because sometimes I feel like a very old soul and see that in others. Regardless, this life is precious, be it the only one we have, or one of many. “Do not squander this precious life.” I don’t know when I will die. Maybe these blood clots in my head mean a stroke will come and my time on this earth is more limited than others. Maybe they mean nothing. Maybe they are a reminder to slow down and let the blood flow as it can and create new pathways around those the clots have blocked.

My best friend, Szilvie, spent most of tonight as a patient in the emergency room at the hospital where she works as an obstetrics and gynecology intern. She cries every day for her own tangible and intangible reasons. Now she passes out in the operating room and they do head CT and chest CT and heart monitoring to try to figure out why. I think I know at least one reason why: this training—this medical training—is hard on the soul. I see some doctors in training become hardened and it saddens me. Jason, a budding cardiologist, who used to love to laugh with me, now has wrapped himself in a stiff and dark cloak of responsibility and bitterness. I wish I could tell him he can be glad and responsible at once, but he’s decided to not talk to me anymore because our memories of laughter together make his girlfriend feel threatened.

I cannot change Szilvie’s dizziness, nor Jason’s journey, as much as I sometimes wish I could. Everyone has to find her own peace or his own center. And that source of balance changes, sometimes hourly. I remember when I found peace in the pool, or in the ceramic studio, or in throwing a Christmas party for my auto shop class. Or when centered meant riding my horse through the orchards along the river, or spending long mornings in bed with someone I thought wanted to lay with me forever. Tonight I remember peace while lying in yoga class on my back in the corpse pose knowing that I am working toward something that gives me the skills and the privilege of intimately touching lives. I find peace in it now because I want it despite the sacrifices it requires of me. Mr. Sylvester’s wish will come true. Someday we all die. Until then, I want to live!

Termite Hunting

I can’t figure out what to do with my life so I sit at home and wait for bugs to crawl out of the wall. Well, the windowsill to be precise.

For a couple weeks I’d noticed this weird pile of small light to dark brown balls each a little bigger than a grain of sugar arranged in a symmetric circle about half a centimeter tall. The first time I didn’t think too much of it, and cleaned it up with an old sponge. The balls sort of stuck to the sponge and to each other and rolled around into out of reach places so I couldn’t pick all of them up.

The next day the pile returned in exactly the same spot. I wondered if my head had finally checked out. But no, the remnants of the previous day’s clean up still hid in the crevices. The pile had not cleaned up well with the damp sponge so I tried to get it up with a dry paper towel. It swept up easily and made it to the trash just below.

I was perplexed. What could be making this odd little mountain of brown pellets? Some sort of insect, I thought. I looked above the pile to see if anything could be falling from there. Nothing looked out of the ordinary. I looked all around where the pile had now twice materialized and still saw nothing.

For a couple days I ignored it. I was working all the time and had a friend visiting. Part of me wanted the pile to reappear while he was there to prove that I wasn’t going crazy and someone else could see it, too. Of course, the pile didn’t come back until after he left. And the third time it wasn’t much of a showing--just a few of the little pellets and not nearly enough to form the mini rounded mountain—more like a small rock slide.

Still I swept them up again. This time, though I noticed a hole. Perfectly round and dark against the white of the new kitchen window sill, I can only guess that I assumed it was a nail or screw before. Now that I looked at it carefully, the black round thing definitely had depth to it. A hole in the middle of the weird pile? Hmm?

So by this time I’m so stressed about work and the neuroradiologist telling me that he wants to take the clots out of my head that my headaches are back and they have me scared. I sit in my darkened apartment for a couple days worrying about my head and making it worse. I’m sick sick sick of having to think about being a doctor and having stupid lupus-related brain clots that I thought would go away with the months of blood thinning medication but clearly have not. The patients with lupus and strokes dying in the ICU become too much for me and I tell the residents and chief about my headaches and they let me leave. I feel guilty that I’m not working. I feel confused about what to do with my future. I read “Man’s Search for Meaning.”

I can’t decide if I want to endure suffering of medical training when I have other options. Frankl calls that “simply masochistic.” Is my calling to be a doctor and keep trying to finish this program? Or if I don’t use my education and gifts will I feel that I’ve wasted my life? Even if I do write, how many people will read what I write? And how many of those will it truly touch and change? That’s why I chose medicine all those years ago when my literature professors tried to talk me out of it: because it gave me a better chance to help people and understand them and, as Wadsworth or Thoreau or someone says if you make suffering less for one person then life has meaning.

Or if I should stop now and work in any clinic I can, as a general practitioner, not board certified and still afraid that I won’t know enough. Or does having a crisis of faith about medicine’s wisdom makes me perfectly unsuited to be a doctor. I have trouble believing that doctors have the answers. In fact, I know we don’t because we can’t fix my head. And really, do I want to work this hard? And so, I sit at home waiting for bugs to crawl out of my wall, or windowsill, to be precise.

Eventually they do. I’ve deduced by this time that something must live in that perfectly round hole. And then I see the antennae. Ah hah! And then it drops out one of the round tan balls that rolls a little on the windowsill. The culprit. “Now this,” I congratulate myself cheekily in my empty studio apartment, “This is a good use of my time.” At least it makes me smile, but that reminds me that smiling aggravates the clots and the headache returns to the left temple for an instant before I banish it with the power of the mind.

I rush to the other room and get the needle driver out of one of my drawers. What I really needed was one of the small angled tweezers we use to dilate belly buttons in the premies to insert umbilical central venous or arterial lines. I probably have one buried in my other random instruments but I didn’t have time to look in that moment. The antennae might disappear and if I can get their owner this mystery (and the little pile) will be finished. Mission accomplished, or so I hoped.

Alas, the antenna retreated despite my attempts at stealth. I decided to bide my time and make some lemon bars while checking back periodically to see if the adversary decided to show his face around here again.

The scent of the lemon bars must have driven him back in. I decided to do some yoga. It stimulated all the joint fluid, according to the DVD instructor on my computer. And somehow that made me have to micturate (aka pee). I got up to do that and came back to find a winged insect on my turquoise yoga mat. Interesting. I retrieved the needle driver from the kitchen and took the bug outside with my flip flop to squish it on the pavement there. I felt only slightly guilty about killing it. It looked sort of like a winged ant. I am not fond of ants.

I finished yoga and decided to do the dishes. Soon I would run out of all of these meaningful activities and have to fester again in my guilt about not being at work and thinking if I ever wanted to go back and searching for meaning. I decided to put on some music to drown out those thoughts even more. The singing hurt my head so I mostly listened to it softly. I learned all the words to Jens Lekman’s “You Put Your Arms Around Me.” I didn’t understand them fully until the next day when I realized the lyrics talked about him slicing off his index finger.

I kept checking back on the windowsill though. And finally, I saw it! This time half of its body was out of the hole. The antennae wiggling still; it had failed to sense the danger I presented. Fool! It looked like it had wings still folded up and trapped in the hole. I hurried to get the needle drivers again and grabbed his thorax to pull him out. Success was short-lived. As soon as I put him in the trash, more antennae appeared. Hours of entertainment, I assure you.

The next bug was reluctant to come out, so I again bided my time like the patient hunter I had become.

I went outside to talk to Angel and his brother, the maintenance men who had come to put in my neighbor, Joseph’s, new window. Joseph had forgotten to move his bed out of their way. He had left for his dad’s house with his laundry a couple hours before. His dad lives at least half an hour away. I called him to see what he wanted to do about the window. Eventually, the five of us decided rescheduling was best. I brought Randy, Angel, and his brother lemon bars to celebrate our successful important decision.

I cornered Angel to ask him about my bug problem. He was wary as soon as I said, “Hey.”

“No complaints!” he teased, “Especially about the windows.” He had installed my living room window a few weeks before. I learned then that he has thirteen brothers and sisters; he has green eyes, despite being Mexican; and he hugs his mom even though she pretends she doesn’t like it.

I gave him an abridged version of the bug saga and he found it amazing that I had time to sit at home all day and watch bugs crawl out of the wall, or windowsill to be precise. That’s me, Dr. Amazing. I feel awesome.

“They’re termites,” he identified them quickly.

“Really? Termites have wings? Then what are all the little brown balls?”

“Sure, they’re termites. This whole place is full of ‘em. And that stuff is their poop.”

“Eww!” I cringed, thinking of the time I touched it while wiping it off the windowsill.

“It’s just wood. You know the reason the walls still stay up at all?” The mischievous glint appeared in his green eyes and I loved life again for a curious instant. That was the meaning of life. That was real.

“Why?” I played along happily.

“Because all the termites hold hands.”

We smiled together for a few moments before I became practical again, “So what do I do about them?”

“Plug up the hole.”

“That’s it?”

“Yeah, they only come out once a year.”

“So next year I’ll have to do the same thing?”

“Yep. They’ll make another hole then.”

I see a long line of holes in my future. Which one holds the snake and which one holds the pot of gold? Apparently, they all hold termites. And my hand is too big to fit into any of them. And in all likelihood, I won’t live in this studio apartment at the beach for the rest of my life. Unless the clots get me and I die very soon, which is really my big fear right now and why I’ve been thrown into such a crisis of faith. And why I sit at home avoiding thinking about it by watching bugs crawl out of the walls, or window sill to be more precise.

Later in the evening, I still ruminated about the bugs eating my walls. By then my mom, her boyfriend and his mom, Loraine (who had washed my laundry and made me lemon cake before I’d ever met her) were enjoying sangria before my mom’s heavenly meatball-filled lasagna for dinner. Life was good then, even though I’m not supposed to drink with my medication. I conveniently forget the rules sometimes.

“We used to have termites, too.” Loraine shares in my recent obsession. “They were eating up the wood in the garage until I decided to spray WD-40 in their holes. I didn’t want to fumigate the whole house. And it worked.” As she’s saying this my mom’s boyfriend, Bernie, leaves and reappears a minute later with a can of WD-40 he places by my bag with a meaningful glance. He recognizes the hunter in me and supplies me with a new weapon. Not to mention that they all spoil me. They feel compelled to take on some of my “burden” and help me through my crisis of career and health and faith as best they can. Sometimes I feel guilty about that too. I must have been a devout Catholic in another life.

“Really?” I want to confirm this miracle termite repellant story. “How long did it take for them to go away?”

“Oh, I sprayed them every couple days for a few weeks. They never came back.” Loraine is a fellow huntress; she had time to sit around and watch bugs crawl out of her walls, too. At least I’m not the only one. A couple weeks, though. I’m not sure I can stare at them for that long.
When I get home later with a full belly, feeling satisfied and trying to suppress the guilt of eating too much, I get out the WD-40. No antennae appear at the moment. I take aim and fire, making a puddle of clear grease around the entrance to their lair. Satisfied with my day’s investigation and work, I retreat to bed feeling an unwelcome loneliness that tempts me to call one of my ex-boyfriends. But I remember why I broke up with each of them and refrain; I fall asleep trying not to think too much about anything.

By the next morning, the puddle of grease has soaked into the sill in the shape of an as of yet undiscovered continent, slightly darker and shinier than the virgin ocean of white sill around it. I see new poop balls, though. And later in the morning, I see more antennae. I find it more satisfying to pull out their squirmy bodies with the needled drivers so I resort to my original weapon of choice. I grab gently enough to not break the termite in half while I drag it out of the hole. Once out, I stare at it for a few seconds before clamping down harder on the small tool. Crunch. The insect still wiggles a little as I throw it into the trash.

Gratitude

Last night my neighbor, Joseph, came bouncing in (it is amazing how a six foot six 23 year old can bounce, but I assure you, he did) at midnight and woke me up. He couldn’t wait to share his news. He’d just returned from a concert by his favorite group. One he had introduced me a couple months ago when I put my head on his shoulder for the first time. He had given away my ticket for last night because my brain clot headaches are back and the sound (and, truth be told, his bouncing) makes them worse. I slept in somewhat mournful peace, trying to not feel guilty about another medicine intern covering my thirty hour shift that night.

He woke me up because he simply could not contain his excitement. He got to hang out with the band members, the ones in the movie, “Once,” Glen and Marketa, now on a first name basis with him. His grin spread nearly as wide as he stands tall, especially when he slouches, which he usually does.

“The show was amazing!” he stretches out the vowel sounds when he feels extra heights of emotion. “Aaah-maa-zing!” And he talks really fast. “I got to hang out with them,” he pulls out his tiny new phone and shows me a blurry picture of him and Marketa. “The stage people tried to get everyone to leave, but Glen said no and he would stay and sign anything anyone wanted. I didn’t have anything for them to sign but I sat down to talk with them and hang out. I asked if they wanted to go surfing, but they’re driving to Colorado tonight. I talked with Marketa mostly,” his grin grows wider if possible, “She is so little. You know in the movie how she makes Glen look tall?” he never waits for me to respond to these rhetorical questions, and especially not now in his exuberance, “Well they’re both little. He’s probably 5’8’ or 5’9 and she’s tiny! I just wanted to pick her up and take her home with me.” He mimes the action and I can see him doing it in my mind, Marketa with a shocked pleased look on her face as he lifts her to his height.

I still felt groggy, but very glad for him to have enjoyed himself so much. I smiled deeply and scooted over in my warmed up bed so he could sit on the edge and share and show me the picture on his phone. He couldn’t sit still for long, though. I rubbed his knee slowly and he patted me rapidly and smiled like he does when even his toes are glad. “I’m glad you had such a good time,” I smiled with head still in the warm nest of my pillow.

“Yeah, I was going to try to tell you that it was just okay so you wouldn’t feel bad about missing it, but I couldn’t. It was amazing!” He stretches out the vowels again. “I got to hang out with them. They played for way longer than they were supposed to. You could just tell it was a good night for them. There was this guy there who was at the Las Vegas show and he said it was totally different and way better here. They talked a lot when they were on stage and involved the audience. Glen said he didn’t know what it was either. Maybe the rain he could see through the door,” It hardly ever rains in San Diego and when it does people get paradoxically intoxicated with the novelty of it, “Or something. But they played for over two and a half hours and he played this song that he’s trying to get on Seasame Street. About bananas and we all sang along. He’d never played it for anyone other crowd before but he said he just felt so good that night.” He talks without punctuation. The joy from one sentence spills right into the next; and he keeps repeating the information as if to prove to himself and me that the magic really did happen. I like seeing him so completely happy.

This morning as I’m breathing through my yoga exercises led by the man in the video on my computer, I think of why Glen stayed as long as his fans wanted to share time with him. At the Mason Jenning’s concert Joseph, Chris and I went to last week, Mason didn’t come out to sign anything. And Joseph couldn’t even get his guitar pick as a souvenir. Maybe it was the rain last night. Sometimes lives align so you can see “everything appear to man as it is, infinite,” says William Blake. And in that glimpse of infinity, when all of the clutter of the present disappears, you feel gratitude. I imagine Glen feeling gratitude for his fans last night—the people who appreciate him deeply enough to support him in doing what he loves. He felt gratitude for the woman at his side whose voice and life had been joined to his through the turn of events in their now collective music. Glen’s gratitude spilled over onto the giddy man sitting on my bed, and his joy spilled onto me. Happiness spreads that way, infinitely.

“Anyway,” Joseph bubbles on and stands up, grabbing the new brown corduroy jacket he likes so much, “Sorry to wake you. I just had to tell you and your phone was off. I got to hang out with them! It was amazing!” he looks extra tall from my bed and the light from the open door silhouettes his lanky figure; “You have a good night!” he leaves with another instantly spreading grin and another exuberant vowel sound, locking my door behind him.

He dislikes being alone, especially when he has so much excitement to share. He doesn’t like to enjoy it quietly and savor it like I sometimes do. One of the many ways he and I are different. When I visited Spain for two weeks in the midst of my crush on him, I could pick him up and take him with me like he wanted to do with Marketa. Without him physically present, I made him into everything I wanted. I came back and, after the first shocks of reality colliding with imagination, saw him for himself and the crush abated. Though I did enjoy the depths of feeling and fantasy, I enjoyed them alone. I am profoundly grateful to have felt those feelings again--grateful to Joseph and to Spain and for the gift of still being able to think clearly and deeply after my strokes and my new illness. And yet.

“And yet” is a refrain from Nicole Krauss’ “The History of Love,” which Joseph loaned me to read while I traveled around Spain. The book is about a man who loves; and loving is his life, despite the reality of never marrying the woman of his deepest affections. And yet, the reality, when left outside, cannot discolor his fantasies and memories he hoards inside his small cluttered apartment. In his head, he knows only his love; and his love is perfect.

Both of my parents have decided to read the book now, on my recommendation. As far as I know, neither one knows the other’s eyes are glazing the same words at maybe the same time. They don’t talk to each other much anymore after finalizing the divorce last month. I tell them I want them both happy.

They thought their love would last forever, that it could go beyond their twenty-year-olds’ infatuation with each other, that it could spread into raising my two brothers and me, and that together they would greet grandchildren on the family farm. They got the first two right.

I watch Joseph as he practically prances, in a manly way, of course, out of my door into the still rain-scented night. My parents were married by the time they were his age. When I was 23, I had almost finished college and trying to get over my first broken heart. At his age, I still thought the reality and the fantasy of love could meet and hold hands into eternity. I thought that joy he felt from his magic concert night could be found and maintained with another person. And my parents thought the same. Even as they start new separate relationships, they think the same on their second tries. I want to tell them that, in my experience, the infatuation doesn’t last. But the gratitude can. That deep appreciation of the feelings the other person evokes in you can last, even if the other person leaves or changes or grows differently than you. The stability of love is your own.

In “Man’s Search for Meaning,” Victor Frankl writes, “Love goes very far beyond the physical person of the beloved. It finds its deepest meaning in his spiritual being, his inner self.” He thinks this in the concentration camp as he talks to the image of his wife he holds in his mind. He did not then know she was already dead, but, as he says, it doesn’t matter, because he holds her in his mind. And in his mind, she is wholly present and completely his own—a love for which he feels a gratitude spreading into his infinity.

Patients Die

We withdrew care on my liver patient last week. It was the right thing to do, but still hard.

Withdrawing care on another patient today; she's 43. Stroked. So young.

One of my patients with lupus died last week, too. Embolic they think.

This job is hard.

I've had a rough couple days. I think I'm flaring again, too.

Any Change

“You should be this depressed,” he holds his thumb and forefinger four inches apart, “Not this depressed,” as he spreads his arms in a false invitation for a hug. He has just reviewed my brain MRI with me. My head remains full of blood clots. I sit to his left in the crowded dark reading room, tears spill onto the scrubs and white coat I’ve been wearing for the past thirty hours. I forget to breathe while I stare at the black and white three dimensional images of the stuttering and occluded veins inside my head. When my lungs demand breath, the rapid intake sounds harsh and loud.

Upon returning to my call room 30 minutes earlier, I hadn’t planned on calling him. I’d been awake for all but three pager-interrupted hours of the past thirty. On call in the ICU, I spent part of the night managing a 43-year-old woman who experienced a severe stroke four days prior. Last night, the ultrasound tech saw clots in her femoral veins requiring the interventional radiologists to put a filter in her vein to catch the clots before they washed into her lungs and suffocated her. The head of the neurology stroke team had been there late last night. I asked him about her prognosis. She hasn’t woken up since admission. She still has a breathing tube; the nurses have shaved all her hair off to make it easier to place the monitor which measures the pressure inside her head, her intercranial pressure. Still, he felt hopeful, “She’s young. She could pull through this.”

I wanted to ask him about my MRI and my stroke, but it seemed the wrong time and talking about it reminds me that it exists. Also, if I didn’t hear anything bad about it, I could still convince myself that the clots have gone. I had checked the computer several times that day already; the final interpretation was not yet in the system. Still, as I worked the rest of the night, the worry swam just below the surface.

After midnight I admitted another young woman whose seventeen week fetus had died inside of her. When the gynecologists at another hospital suctioned the dead fetal contents out of her, she started bleeding and had to have her uterus packed and her uterine arteries blocked off. She had bled enough to have the lowest blood counts I’ve ever seen. Usually, we give blood transfusions to people who bleed this much, but she is a Jehovah’s Witness and feels that accepting blood will send her to hell. She came to us to use our hyperbarric chamber. The three atmospheres of pressure would force extra oxygen into the liquid around her scarce red blood cells. The admission took some time and I didn’t make it to my call room for sleep until after 3 am.

At 5:15 am my code pager also went off, “Code Blue, Burn ICU.” I barely woke up. I felt a bit like I had when I stroked seven months prior, like I could not move my body or force my eyes open or will my brain to think with the little oxygen delivered to it from my own blood. My pager kept beeping and the overhead announcer repeated in a measured voice, “Code Blue, Burn ICU. Room 5--.” Code blue means the patient’s heart has stopped or he has stopped breathing. Calling a code means he is either dead or close to it. When nurses call a code blue the appropriate people come running from all corners of the hospital to do chest compressions and push medicines to fight off death. I think they should wear capes to codes, like superheroes.
I tried to sleep for another half hour after they got his heart beating again. I say they because I dislike codes. By the time I got there, everyone already had their role anyway; more hands just get in the way at that point. Or at least I told myself that.

When I gave up trying to sleep, I started “pre-rounding on”, or assessing, my patients in the ICU. Rounds with the supervising doctor went well, though slowly. I only had two primary patients, the other five I had covered overnight for the second intern. By the time we finished seeing and making plans on all the patients, I felt fatigued and irritable. The residents’ power-trips and callous comments became unbearable. My end stage emphysema patient’s daily obsession with her abdominal distention (which I’d assured her repeatedly was gas) started to wear through my layers of patience. The nurse manager’s frantic attempt to recruit me to talk about transfer paperwork became simply ridiculous, “You’re a doctor, come on,” she demanded. “I’m post-call,” I explained. I felt too tired and annoyed by that point to explain to them again that I needed to leave.

I hadn’t planned on calling the neuroradiologist when I finally made it up to my call room to retrieve my overnight bag. My MRI had been two days ago and since then I had looked at the images myself. Brains are complicated to view, but even I knew enough to see that mine didn’t look right. The preliminary read used words like “absence of flow” and “flow void” and “complete occlusion” in describing my venous sinuses, or the vessels that return blood from my brain to my heart. I tried to compare it to the prior scan which showed clots in many of my venous sinuses seven months before. It didn’t look much better to me. That first MRI had shown a physical reason for my horrible headaches, numb feet and mental decline. It also led to a diagnosis of systemic lupus erythematosus, lupus anticoagulant and a third clotting abnormality. At least now my thinking felt clear again, even if my emotions felt more like the vessels trying to carry blood from my brain: narrow and raw.

As I packed up my call bag, I saw my new coumadin prescription and my purple pill box--constant reminders of what I wanted to forget. I decided to check one more time to see if the final read of my MRI was in the computer yet. I still feel strange looking myself up; being a patient is much harder than being a doctor. Maybe by some miracle, the preliminary resident and fellow interpretations were wrong and the attending radiologist would say it was much improved. Maybe he could even call it “normal brain and vessels.” Denial is powerful.
I still live in intermittent denial months after my rheumatologist told me I have lupus. “I am only 28,” I thought, “I’ve done mini triathlons, climbed mountains, I’ve traveled, I completed college and medical school, I am sturdy and strong. They all must be mistaken; they don’t know me.”

They don’t know me. And, as the months between my two MRIs trickled past, I wondered if I know me either. My parents’ divorce, my car getting stolen, my break up, my lupus flare—everything in those six months blended together into the primary questions: Why? What? How? When?

Why did these “bad” things happen? Why does my immune system attack my own body? Why did I make bad decisions about men in my life? Why did I let them in?

What did I do to deserve this? What did this mean for my future? Could I finish training and become a board certified doctor in internal medicine and pediatrics as I’d planned? What about my brain?

How will I finish training? How do I know this is what I want to do? How will I write, if that’s what I decide to do, and still have good health insurance which now is a necessity? How will I travel? How will I live in the sun, which makes me happy, yet stay out of it because it makes my lupus flare? How will I have time to see my doctors and take my pills and also be a doctor and prescribe pills? How much time do I have?

When will I do everything I want to do? When will I know myself? When will I die?
I hadn’t planned on calling the radiologist, but when I looked up the report for my scan again it still said prelim next to it. I think the report had changed, too. Or I had changed. I find it difficult to tell the difference anymore. It said more about where vessels should be visualized but weren’t. At the top it listed the attending radiologist who was supervising the final impressions of the thousands of images and slices of my brain. I looked him up in the text paging system: “Dr. P--, if you have time, would you mind reviewing my MRI with me? Thank you. Ph---.” I left an internal extension so he’d have some idea that I worked at the hospital. He called back immediately. I tried to suppress the fear that suddenly and rapidly broke the surface of my thoughts.

“Do you mind going over my MRI with me?”

“Not at all.”

“Do you have time now?”

“Yes.”

The brevity of his answers let me hurry through the pre-conversation, trying not to cry, “Is it alright if I come down now?”

“Yes.”

“Are you located in the MRI scanner building?”

“No, in the main hospital. Do you know where?”

It was my turn to say yes, “I’ll be there soon. Thank you.”

At first I didn’t put my white coat back on, but as the elevator descended the 11 floors, I decided to accept whatever sense of knowledge and security and esteem it offered. If I wore it, he would know more about what I’ve done with my life, even if he still wouldn’t know me.

I shook perceptibly as I opened the door to the reading room. It was dark with computer screens everywhere; it was crowded and I didn’t know what Dr. P— looked like. I waited patiently and tried to look at people’s name badges when the white haired man standing next to the door put his hand on the small of my back as he finished his conversation. That must be him. I comforted myself with the fact that he saw me, maybe even saw the dull fright in my bloodshot eyes.

“Let’s go somewhere with more privacy,” he said as he finished his other conversation and ushered me out of the room. He had the presence of a senior doctor around him like a halo.
We walked down the hall side by side. I normally can think of some happy small talk to start conversations, but I felt blank and numb and afraid. We walked in silence through the maze of corridors to another reading room.

This room was also dark and full of residents reading films and reviewing them with their attendings, but we sat down at one unused computer in a corner by the door. Dr. P-- was business-like, but also kind and grandfatherly.

“Medical record number?” he asked as the computer program opened. I have purposefully not memorized my own medical record number despite being asked for it several times a month at my appointments or medication refills. It perpetuates my denial if I have to look it up each time or ask if they can look me up by my last name instead. Just two days before, however, as I waited to get my blood drawn after my resident had accidentally stuck me with a dirty needle, I’d decided I could at least enter my medical record number into my Palm, just in case. I hadn’t known “just in case” would come so soon.

I unclipped my palm from the waist of my scrubs and looked myself up. I gave him the number. The files took minutes to load. He made a comment about this computer taking a while, and then we waited again in silence. I stared at the loading files because I didn’t know where else to rest my eyes and looking there seemed least likely to send me into tears. I didn’t want to look around the room at all the other residents, working and rested and presumably healthy. Although, I have learned that appearances can be deceiving. I look healthy most of the time, too.
There were 10 different files with 100s of images each. There were slices and three-dimensional recreations of my brain, skull, eyes, sinuses, and vessels. Some were in black and white, others were in skin-toned color. The MRI doesn’t see hair, so I was bald in all of them. I knew I’d been crying during the scan, and I wondered if the tears would show up. I looked for bright spots there, but didn’t see anything.

He looked silently and methodically through all of the images. I sat patiently. The sounds of the room faded away. I tried to see what he must be seeing or quiz myself on what part of the brain I saw, but I found it too hard with my own brain, especially when it’s not normal. Even I could see parts missing. And I knew he could see more.

“I like to look at all the images before I get the patient history,” he said as he neared the end of the pictures and pulled up the one that isolated the veins draining blood from the brain. When he was ready, I told him the story I’ve told dozens of times: “I was working on wards here in April and I had headaches. I’d never had headaches before but I thought it was the stress or dehydration or being tired and busy all the time. The headaches got much worse as the month progressed until I could no longer function. My feet went numb and I could no longer read or write or think clearly. I started to vomit intractably and I knew something was wrong. The MRI showed clots in most of my venous sinuses. And strokes.”

“What did they do for you?”

“Admitted me to the hospital and put me on a heparin drip for ten days.” I left out the part about how lonely and scared I was during that time. How I felt alternately numb and terrified. How I felt damaged and broken and uncertain of any future I’d once imagined. I left it out not because I didn’t want him to know how I felt, but because I’d begun to sense that he already knew.

“Classic history,” he nodded. “When I was in med school one of my teachers told me you never want to be an ‘interesting case.’ You’re an interesting case,” he paused and looked back at the pictures, “I was an interesting case, too.” There it was. I could tell he understood and now I knew why. He was a patient/doctor, too. I wonder now if people sense that about me now and if it comforts them in the way that he comforted me just by his presence.

Looking at the picture of the vessels in my brain, he pointed out the filling defects and occlusions and where vessels should carry blood but don’t. I wanted to try to remember the words he said, but I couldn’t. They became muffled by my rising fears.

After I explained about the lupus and the coumadin therapy, he pointed to the clots, “I would go in there and take these out.” I blanked. Surgery on my brain? I looked down at the label embroidered below his name on his white coat for the first time, “Endovascular Neuroradiology Chief,” it said. He is the head of the department that specializes in the vessels of the brain. And he does interventional radiology, where they use live x-rays to guide them into various parts of the body. In his case, into the brain. And in my brain, into the vessels to remove the clots. Long catheters pulling and scraping the clots out of my head. I knew too much for this to pass by in oblivion. And I’d seen and heard of too many complications from seemingly benign procedures.
I could no longer blink back the wells of tears beneath by bottom eyelid. They spilled out as my forehead contracted in sorrow and fright. That was when I forgot to breath and the sharp intake of breath when I finally did inhale was harsh and loud. I didn’t care then if the other radiologists in the dark room heard. They weren’t learning that they still had clots in their brains and that they might need surgery to take them out. He let me cry, “I worry more when people don’t show any emotion.”

When I stopped sobbing, he explained that as a “white-haired doctor,” meaning experienced, he thought I should take plavix and aspirin instead of the coumadin because of the risk of bleeding into my head with coumadin. And the fact that little evidence supports coumadin’s efficacy in the setting of cerebral venous thrombosis, aka clots in the vessels that drain blood from the brain. Thoughts of my biweekly coumadin appointments for the past six months crowded in; I wondered if they could have been avoided altogether. And if the coumadin didn’t help, how does he, or anyone else, know what will work?

I wonder more often these days how much of our ever more complicated modern medicine is imagined. How much of it really helps people or heals them ultimately. If you broaden the definition of healing beyond the physical body, our healing success rate drops significantly. Our treatments sometimes allow people to escape into a false sense of security with a feeling that “at least Medicine is doing something; it is better than the nothing I can do.” By placing responsibility for our own life or death within the control of Medicine (with a capital “M”) we distance ourselves from the guilt or blame or responsibility of learning and accepting our own life arc. Because our health is so intimately linked to our destiny, giving up belief that we ultimately control our health means we give up part of personal choices about creating an individual reality.
I wonder this now as I struggle with which words to choose to express these thoughts. Next to Dr. P-- though, I wondered if everything I’d been doing for my health was wrong. I’d put faith in the coumadin; it is hard to accept the responsibility of my own health. I sought comfort and escape in Medicine, too. I looked at the vessels of my brain as he told me I needed to control my lupus to control the clot formation. How I needed to stay out of the sun and never get dehydrated and learn the subtleties of my own disease manifestations and triggers for worsening the disease.

His mentioning my need to learn my disease reminded me how much I am affected by too much sun, or too much stress, or too little sleep, or too much sadness, or too much fat, or too little exercise, or too much exercise. It reminded me how this disease forces me to live well, or suffer the consequences of joint pain and debilitating fatigue, and return of the headache and clots, and, likely, an earlier death. From those thoughts, a quick reality check as I sat there exhausted and stressed and hungry and thirsty reminded me how unhealthy this career is for me, or at least this phase of it. I wondered, as I had ever since I stroked, if I really wanted to risk sacrificing my own health (physical and emotional) on the alter of Medicine.

“How old are you?” he asked as I continued to cry quietly.

“Twenty-nine now.”

“When I was 27, I walked into a military hospital, as a patient, and didn’t walk out for the next two years. You can make it though this. You are part of a, excuse the sexism, but part of a brotherhood. You are in capable hands. You will meet people who will do anything for you. We have to keep you healthy for another fifty years. You have a long career ahead of you.”
He understood the illness then. He understood the struggle of being a patient and a doctor. But he did not understand that I wasn’t even sure I still wanted to be a doctor anymore. I remembered that he comes from a different generation with higher emphasis placed on self-sacrifice, especially in Medicine. He trained in a time when doctors expected to leave their own loved ones at home to sit at the bedsides of comparative strangers--when doctors often carried the privilege and the burden of recognizing and witnessing the passing of life. Their role, in the collective emotional, if not always physical, health of society was to protect life as well as to validate death.

This is a hard, yet profoundly noble, role he has played. And one which I, sitting there in my white coat, have the potential to play, and given what I know of myself, and all I’ve experienced in these past months, play well.

The hard part in Medicine is not learning all the right answers, although I do worry that I don’t know enough of the answers. One of the hard parts about being a doctor is understanding health and balancing your own health and needs with the health and needs of those for whom you care. Really, this balance represents a hard part of life, regardless of profession.

Dr. P— gave me his cell phone number, telling me by this gesture, that he was one of the people who would do anything for me, as part of the “brotherhood.” We sat there for a minute longer. He knew I had another question and waited for me to get up the courage to ask it. I finally did, and the tears returned as I stammered it out, “So you think I’ll be okay? I still have time?” I wanted validation that what he saw in my head would not kill me anytime soon.

“We all die,” he said. Even in the midst of my struggles I recognized his wisdom in the way he told me this. “But I think you have a long life ahead of you still. We can take care of this. If you start feeling any change, come see me and we can take those clots out. I can’t make you better than you are right now because you feel well now.”

“Any change?” I needed to clarify, “Like more headaches? Neurological changes? Throwing up?” I wanted something concrete.

“Any change,” he repeated simply. This “white-haired doctor” already gracefully practiced what I’ve just begun to learn. With his answer, he gently refused the responsibility for my health. Not because he did not want to accept it, but he’d learned that he could not. No person can accept the responsibility of another’s health. We each govern our own lives.

I have to continue to learn about my body and the new challenges this illness represents for me. If I learn my own “normal,” I will be able to recognize “any change.” We each have our own normal—our own sense of balance and homeostasis and reality. This illness has at once disrupted and stabilized mine. Disrupted in the sense that my vision of my future now must include alterations I never expected to make. And stabilized with the realization that life is unstable. Change is certain. I learn now to practice recognizing destabilizations as precious opportunities for growth.

In the parking garage on my way to my car after leaving Dr. P--, an older woman walking next to me comments that we must be parked in the same lot as we move in the same direction out of the elevator. It turns out she has the closest parking spot in that lot and I have one much further away. “You’re young and healthy, though,” she says. She doesn’t know about the lupus arthritis in my knees that sometimes makes me feel old on the walk downhill to my car. I try to suppress the fatigue and hide my tear streaked face as I reply, “It’s good exercise, though. And it feels good to walk.” “You have many more steps in you,” she says. Literally she means steps to my car, but as I look in her eyes, I see that she also means that I have many more steps ahead of me in life. She believes I have a long life ahead of me, too. My fears of early death are irrelevant. I will die. She will die. Change is certain. “Any change,” Dr. P— has said, “Let me know if there is any change.” Because when change comes, we recognize the opportunity and convince ourselves the change leads to something healthier and more beautiful than could otherwise have been.