my daughter doesn't sleep

My daughter Lily doesn’t sleep well. She never has. From her birth to age six, she only slept through the night twice. I earned my grey hair during those six years, because I never slept a full night either, except when I was out of town. This was by choice; my wife Robin has trouble sleeping as well, but I always fall asleep easily, so we play to our strengths.

            We tried every method and cure on Lily, but nothing worked. We were firm, we were indulgent, we had a schedule, we had a routine, we gave up on the routine, we stopped all electronics, we changed her diet, fed her more fish, we went to doctors, we did a sleep study, we even studied restless leg syndrome and iron deficiency. She needed to sleep and so did we, so we never gave up. Then, gradually, over about a year, she started to sleep through the night. She simply grew out of it -- mostly. She still has some trouble, and about once a month she wakes up in the middle of the night and can’t get back to sleep...like last night.

            Lack of sleep fucks with your mind. Worrying about sleep fucks it up even more. I’m messed up today, and so is she, and the only solace is that once we get through the day we’ll probably sleep like logs tonight. Like I tell her, there has NEVER been a night where she didn’t eventually fall asleep.

            I also had trouble sleeping when I was a kid. My problem was falling asleep. I think I mostly did it to myself. For whatever reason, I wasn’t tired when I went to bed and I’d lie there awake and start to worry about what my body was doing.

            Am I sleeping now? Is this sleep? Am I falling asleep...now?

            And I’d wake myself up. I worried myself into a state of on-and-off insomnia that lasted over a year, and it made me afraid and anxious. I remember enjoying a beautiful day with my family and then suddenly thinking that it would end and night would come, and I’d be filled with dread. I was afraid of the night in the middle of the day. I hated that feeling, yet it dominated my thoughts. However, I consider the experience a lucky gift now because when I see Lily experience the same dread, I can reassure her:

I was like you. I know the feeling. It will pass. Don’t be afraid. I will help you.

            Lily’s problem isn’t falling asleep. Her problem is staying asleep. It has many names, and it has many causes, but a lot of people have it, and it’s part of who she is. My grandmother had it her whole life. Our good friend Julie Murphy has it too, and when she babysits Lily she laughs and reassures her that she is not alone, because they share the same trait as well: I’ve never been a good sleeper either! I always wake up!

            When Lily was two years old we visited San Francisco, and when we asked her what she liked most about the trip she said “watching TV together in the hotel bed.” I laughed, since that had nothing to do with the actual trip itself, but then she stopped me and said with a tear in her eye:

            No, daddy. Sleep is hard for me. When I wake up, I’m alone.

            She said that out loud at the age of two. From that moment on, I promised her that she wouldn’t have to worry alone about it again, which comforts her.

            After eight years of light sleep, I am finely tuned to her night patterns. I can be dead asleep and hear a bump in her room and the floor creak, and I am instantly awake, no matter how little sleep I’ve gotten. I lie there and listen to her. She’ll get out of bed, creep down the hall, go to the bathroom, get a drink and go back to bed. If I hear a sigh within five minutes I know that she’ll go back down. This is how it works almost every night now. But once or twice a month, she doesn’t go back down. The sighs continue. I know that the mental spinning has begun:

            I can’t sleep. I am alone. No one is with me. When will I sleep? I have a math test today. I can’t sleep. I can’t get comfortable. I’m too hot. I’m too cold. My blanket isn’t perfect. I can’t sleep. My life isn’t perfect. Lila will corner me at recess today, and won’t let me play with Carmen. I’m thirsty. I can’t sleep. Why am I alone?

            After ten minutes, she may get out of bed and wander the house. That’s when I remember how my own dread worked at age ten, and I get up. There’s a blanket ready at the foot on my bed and I take that, steer her back into her room and we get back into bed together and I reassure her, an adult man and a girl, lying together in a small double bed:

            You are just like me. Don’t worry. You’re not alone. This too will pass. I turned out fine and so will you. This is normal too. You ALWAYS fall back asleep. It will happen.

            We have about a thirty-minute window. If I can get her eyes closed and her mind calm within thirty minutes of that first sigh of dread, we can both go back down and only lose 30 minutes of shut-eye.

            If it goes longer, things get tough. Damn it, she’s just awake. Who knows why? And suddenly I’m awake too. I don’t give up, however. I massage her back and feet, I touch her face, we snuggle, she puts her head on my chest and feels my heartbeat as I slowly breathe. We both do ten breaths. We count slowly to one hundred. I tell her a boring story in the dullest whisper I can muster. Everything I do is slow and repetitive so she can focus on something else besides her elusive sleep.

            When she was younger and still small enough to carry, we had other rituals. I’d pace the house with her in my arms, and she’d eventually fall asleep on my shoulder. When that didn’t work she’d ask to go outside. The cool air would calm her and regulate her senses. I would always sleep in sweats with flip-flops by the bed in case we had to go outside, so I could wrap her in a blanket around me. I have vivid memories of walking up and down our street in the middle of the night in all kinds of weather, with the moon shining through the clouds, or with a cold breeze blowing. The world was quiet except for the rustling leaves from the wind, and the 101 Freeway rumbling a mile distant. Sometimes I’d hear a train whistle, which was at least five miles further away.  A police car drove by once and the officer lowered his window, but when he spotted Lily they just nodded, waved, and rolled on. A sleepless father and child walking in the middle of the night is not an unusual sight for them, I guess. We’d then go back inside and collapse, and sleep would overtake us. This is the second best scenario because we only lose an hour or two of sleep, which is what happened last night.

            Once every few months, however, sleep doesn’t return. If after two hours of trying, she’s still awake, we give up. I understand her frustration at that point -- the whole world is dark and she is alone and wide awake, which is irritating and lonely, and it’s better to just do something else.

            We lie and whisper in her bed, and I tell her about my childhood, and we talk about her fears and hopes and dreams. There’s a tall redwood tree in our neighbor’s yard and in the past two years an owl has moved in, and late at night if we lie still we can hear the owl calling. One night there was a lightening storm and we went on the back porch and watched the crackling bolts streak across the sky. We sing songs and I tell her about falling in love with her mother, or how I would walk to school with my brother when I was her age, and that we even took the bus downtown for karate class, which she thinks is amazing.  We pull back her curtains and stare at the redwood tree next door and look for the owl, and stare at the stars. She usually falls asleep before dawn, and I lie awake, listening to the silence. For me, I no longer hear true silence. When there is absence of noise I hear a slight ringing in my ears, which is like a background hum while I watch her sleep until I finally pass out too.

            I don’t wish her challenge on anyone, but it’s made her resilient and given us time together we wouldn’t have had otherwise. I want to commission a painting of Lily staring out the window in the middle of the night, her braids on her pillow and her mind full of thoughts as she searches for the owl in the tree.  We all have issues, and our challenges teach us and have their benefits, and Lily is mature beyond her years because of it.

            A few years back every night was rough and the days were sometimes rougher. I was producing a show for Ted Skillman of Snackaholic, and he could see that I was exhausted, so I explained my whole story. To his credit, he found my plight intriguing and didn’t make me feel bad about my performance -- he knew my work would get done.

            He also confirmed how typical Lily’s condition is, and may actually be normal. He explained how sleeping eight hours straight is actually new in human history. Before electricity, before the constant 24-hour clock, our waking and sleeping rhythms ebbed and flowed with the seasons and the work that needed to be done. Sometimes we slept ten hours, sometimes more, sometimes less. There was usually an “awake time” in the middle of the night, when people would wake up after four hours of sleep, and they’d enjoy the night for two or three hours, and then sleep another four.  They’d eat a meal, make love, look at the stars, study astronomy, write a letter, philosophize -- all in the quiet darkness, slow and unhurried. It was a night rhythm, like cats padding slowly through the alleys at night. Thoughts could come, drifting on a river of life moving deep and slow in the darkness. Discoveries, decisions, observations and appreciations were made, all in slow time.

            Maybe there’s nothing wrong with Lily at all. Maybe she has it right, and the rest of the world is wrong. When I told her what Ted told me, we both smiled. We own the night. We’re in no rush.

Here’s some information on divided, or segmented sleep:

http://en.wikipedia.org/wiki/Segmented_sleep

Segmented sleep, also known as divided sleep, bimodal sleep pattern, bifurcated sleep, or interrupted sleep, is a polyphasic or biphasic sleep pattern where two or more periods of sleep are punctuated by periods of wakefulness. Along with a nap (siesta) in the day, it has been argued that this is the natural pattern of human sleep. A case has been made that maintaining such a sleep pattern may be important in regulating stress.

Historian A. Roger Ekirch has argued that before the Industrial Revolution, segmented sleep was the dominant form of human slumber in Western civilization. He draws evidence from documents from the ancient, medieval, and modern world. Other historians, such as Craig Koslofsky, have endorsed Ekirch's analysis.

This is a news report on divided sleep:

http://www.bbc.com/news/magazine-16964783

This is on sleep and the teenage brain.

http://www.brainpickings.org/index.php/2013/07/17/sleep-and-the-teenage-brain/

Most of all everyone...take naps and sleep!

Uncle Jim

My Uncle Jim passed away last week at the age of 83. He grew up the middle son of three, sandwiched between my Uncle Bob the eldest, and my own father Andrew, the youngest. There had been a fourth brother, Donald, after whom I am named who died before the age of ten.

            Jim Bull was the fun-loving middle child of the three boys, which is actually a serious and important role in any family. Being a middle child myself, I understand how a well-timed silly comment can diffuse the family tension around the dinner table, while other family members dig in their heels, hold grudges, or mentally check out. We become the bridge-builders between parents, parents and children, and between brothers and sisters. Uncle Jim was willing to listen, willing to teach, and willing to play the jokester to keep people talking.

            It comes not from a desire as much as a need -- the oldest and youngest are secure in their roles, but when you’re in the middle you feel most secure when all others are secure. When I saw my Uncle Jim in action, talking with my grandparents and brothers, I recognized myself in him.

            He was an accomplished and award-winning teacher, both at the high school and university levels, a calling I now hear as well and which I hope to make one of my next vocations.

            He was my father’s best friend growing up. When my mother first dated my father, she knew him as “Jim Bull’s younger brother,” since all the young women throughout the small town of Fort William, Canada knew Jim. My mother has a vivid memory of him showing up to a high school football game with his then girlfriend, dressed in straw hats, raccoon coats and waving pennants as if it were the 1920’s.

            He made chores fun -- when we visited his family at their cabin on Lake Shebandowan, he’d gather the boys from both families and we’d go out on a hike. The miles were filled with jokes and laughter and we ended up carrying back wood for the stove and fireplace, not even realizing we were doing chores. I try to use his technique now as I raise my daughter Lily.

            I felt special because as an uncle he wanted to be in our lives and wanted us to know him as our father’s brother. He anointed himself “Uncle Adonis,” and insisted we call him that, which was both absurd and hilarious, but also a name only we nieces and nephews could use, and each year we’d get a new Uncle Adonis photograph for the refrigerator.

            He was also my father’s best friend growing up, and he could soften my father’s more serious personality. My father was happiest and had the most fun when some other man around him gave him permission to relax and have fun -- and that was often Uncle Jim. One long summer James Bull and his family left Canada and came to San Francisco to spend three months with us, and that summer was a highlight of my childhood, with two big families under one roof. All summer long it was day trips, Giants games, camp outs, and Disneyland.

            No one gets out of life unscathed, and the Bull boys had their share of problems. Youngest Donald passed away in childhood. My own father died twenty years ago from pancreatic cancer, meaning my Uncle Jim outlived two younger siblings. Jim was in a car accident in 1989, which almost killed him, and the resulting brain bleed took away some cognitive function and robbed him of much of his vitality for the last 25 years of his life.

            My cousin Jeff helped take care of his Dad in the final years of his life, while he was also raising his three own boys...just as I remember my Dad and my Uncle Jim taking care of my grandparents as they aged.

            Now the life cycle is repeating again with me. I am raising a daughter and supporting a family while also working with my brother and sister as we help our own mother decline with dignity and grace. While we do her taxes, plan her long-term care, and argue with her about her health, Lily looks forward to time with her cousins, just like I did with my Uncle’s family. And like I once was, she is vaguely aware of her grandmother’s decline and the work her children are doing, a job she will inherit when she takes care of me one day.

            The business of life invades our busy schedules while we make all our other plans, but it is the business of growing, living and dying that makes us human. When I wake up in the morning I have so much I must accomplish for three generations, yet now is the age that I feel truly alive and aware of life’s continuum. I see the beginning, middle, and end, all at once. I also feel alive because I know that it’s passing. Years pass, roles pass, torches pass, mantles pass, and people step into their new roles and life goes on. 

From the Mouth of Babes

Since my daughter Lily could speak, she’s made some hilarious statements. All kids do; what makes Lily’s statements different is that I wrote them down. As I read what she’s said over the years, I feel how she’s changing from adorable to adult, from precocious to profound, but losing her innocence on the way.

Age 2:

After coming home with a haircut: “Daddy your head got smaller!”

During a rainstorm: “The rain is a massage on my ears.”

While playing hide and seek: “Look at me! I’m hiding from you!”

In a large restaurant bathroom with an echo: “Listen! My voice is dancing.”

Age 3:

After hide and seek: “I was hiding and I found myself.”

“I can burp and fart at the same time.”

Staring at cereal on her spoon: “Is he a creature? I don’t want to eat a creature.”

“We’re American? I thought we were Jewish!”

When Lily’s head gets stuck in her shirt before popping through: “Don’t worry, I’m not scared of the dark inside my shirt.”

Age 4:

After building a house for the fairies out a shoebox: “These fairies are making it very hard for me to believe in them.”

After watering the plants in Lily’s fairy garden, Lily said the water on the blades of grass “looked like beads of glass shining in the sun.”

While rolling her eyeballs like marbles: “Look, I can make my eyes go in circles!”

Throwing her hand up at the dinner table: “Raise your hand if you like Lily!”

Age 5:

Looking at a tree in winter, with no leaves: “That tree looks like it’s full of Chinese writing. The twigs are the brush strokes.”

After a nightmare, in which a giant squid visited her in her bedroom: “He knocked on my door and whispered ‘wake up Lily, I’m going to take you away,’ and then smashed the door and stuck in a long tentacle -- and then he slapped me with his tentacle and said ‘NOT!’ and left. Then I woke up!”

She had a dream in which we were all genies in a castle: “Daddy could float up high, Mama could float where she wanted, but I was still learning and was hanging onto the castle doors.”

Talking about a mean girl in the playground: “I took her bad words and I threw them in the garbage, and I took the nice words and held them in my heart.”

After finishing her chicken dinner; “Chicken Accomplished!”

“This new gum tastes like a convention of fruit.”

“The irises of Mama’s eyes look like the part of the artichoke just before you get to the heart.”

After I inflated a blue doctor’s exam glove: “Finally, I have an udder! I always wanted an udder! Now milk me!” (She then insisted we milk her.)

After learning she could have French fries: “Holy cannoli, hit myself with a meatball!”

Age 6:

Lily asked me to throw her over my shoulders and carry her around upside down. Hanging by her heel she says: “Ahh...this never gets old.”

Waking up on New Years Eve: “I just had a dream that I had a play date with the entire world.”

“If there is a God, he must be inside us. It’s not like he’s in the sky and looking down like he’s watching TV or something.”

Robin and I were whispering while Lily was in bed, and Lily asked why. We told her we thought she was asleep and we didn’t want to wake her.  She said: “If I’m breathing slow, I’m still awake. If I’m snoring and drooling on myself, THEN I’m asleep.”

I asked her if she wanted her bedroom light on in the morning: “No, my eyes are still committed to darkness.”

Her aunt Andrea complimented her on being so well-behaved: “Not at home...trust me.”

“I can feel myself growing. It’s like a tingling.”

Lily is watching a TV show in which the dad is present but the mom is rarely around. Robin asks where the mom is: “She’s always out buying groceries, like you.”

We were playing balancing games on the front lawn and I had to stop because I had a muscle spasm: “I know the feeling. We all have pain in our lives, daddy.”

Lily started a spy club, and initiated Robin and I in as members by touching our ears, noses and shoulders: “We spy on people, and if there are no people, we spy on stuffed animals.”  These are the rules of her spy club: “Be respectful, help others, be nice, and never punch or hit.”

Age 7:

As we walk down to an isolated cove overlooking the bay: “Let’s search for something mysterious!”

“Daddy, I want to go to the patent office and get a patent for the words I invent. That way people have to pay me to use my invented words.”

After creating a fort in her room out of purple sheets and blankets: “I have created a purple world.”

“I dreamed I could fly, and my braids were spinning like a helicopter.”

Age 8:

“I am going back to sleep to find a better dream.”

“I’m just goofing around. It’s my duty.”

“I don’t want a birthday cake this year. I want sausage. I want a birthday sausage.”

Lily’s nightmare (with tears): “I was visiting friends who had fairies in their home. The grandmother hated the fairies and tried to kill them with a hammer, but the kids objected. The grandmother then said she would punish the kids and me if we refused to help her, and she made me wear an orange vest to do her dirty work. I said no and took off the vest.  The grandmother said she didn’t care and lit the house on fire, and as the house burned I watched a fairy burn in the flames.”

When I confront her about the amount of clutter in her room: “But Mama and I love our stuff. This is the way we live. Don’t try to change us.”

“Daddy, promise me that when you die you’ll be buried, and not cremated. I don’t like the idea of you being cremated.”

Consider these statements protected by copyright. They will end up in some book or script someday.  What about you? What’s the wildest thing your kid has said?

Hidden Costs, Hidden Payments -- THE BLOOD CHURN

This is the third blog post that examines the cost of health care in California -- and how money is being spent and maybe wasted.

This week, I need your feedback.

I’m afraid that someone is churning my blood.

Let me explain:

            There’s an excellent rheumatologist with a medical office in the Cedar Sinai Office Tower.  I will call her Dr. Stephanie, although that’s not her name. When you call Dr. Stephanie’s office to book an appointment, the office requires you to have a blood test, before you can see Dr. Stephanie. You may only need to talk. You may want her to look at a report done by another doctor. You may have had a blood test done earlier in the week, for another doctor in the same office tower. It doesn’t matter. You must have a blood test.

            Dr. Stephanie’s office then charges my insurance $900.

            My insurance pays 90%, so I end up paying $90, until I reach my deductible limit.

            When I book an appointment to see my regular internist, they also want a blood test. Sometimes I may be going back for a follow-up appointment, or to get a referral to another specialist. Again, they draw blood. He charges $400, which my insurance company pays 90%, and I pay $40.00.

            I am familiar with blood tests, and I’ve had them many times, for everything from prepping for surgery to a medical exam for a life insurance policy.

            A blood draw is a hassle, especially if you’re getting a lot of them. For proper results, I’m not supposed to eat 12 hours prior to a blood test. So what if I have an appointment with Dr. Stephanie at 3:00 in the afternoon?  Do I wake up at 3 in the morning to have breakfast? Usually it means I must go hungry all day, and I’m starving by the time I get to the doctor’s office. Or, I can go first thing in the morning, get the blood draw, then eat normally, and then return at 3:00 for the appointment. That’s two trips in the car and more time off work, but at least I can function and I won’t be chewing on my knuckles all day.

            Yet, it’s often me who must clarify what I need to do before a blood test. This is a typical conversation I have with most medical offices:

            THEM: You’ll need your blood drawn before you see the doctor.

            ME: Okay. Can I come in the morning for that, and then come back?

            THEM: You want to come here twice? Why would you want to do that?

            ME: Because I don’t want to go all day without eating. Don’t you want me to fast?

            THEM: Oh, right. I guess you should fast before a blood draw. Please hold.

            ME (TO MYSELF ON HOLD): Is this a joke? Is this test even real?

            THEM: Yes, it’s okay if you come in the morning and then come back, but make

            sure you explain why you’re here.

            It makes me suspect that the “required” blood test is just the doctor’s office churning my account, to get easy money from the insurance company to help pay for their expensive overhead.

            I get doubly suspicious when I don’t get the results of the required blood test. I ask them to call me or e-mail me with the results. I don’t need much. Just tell me that everything’s fine, or e-mail a photocopy of the results with some scribbles in the side, I can then save it for my records, and compare it to the results of my next blood test. I am also paying between $40 and $90 out of pocket for the test, and my insurance is paying even more. I expect that communicating the results is part of the cost.

            Or maybe it’s all a sham.

            What do you think? Are they churning my blood?

            I spend too much time writing stories in my head, and naturally I made one up for the excellent Dr. Stephanie:

            She is in private practice by herself, so she doesn’t split the cost of the office with another doctor, which is a lot of overheard to pay each month.  She also deals with a variety of insurance companies, which don’t pay in a timely manner. She may perform a procedure in January, but not get paid by the insurance company for 60 to 90 days. They may also dispute her bill for a variety of reasons, from a new medicine she prescribed, to using an unapproved device in a surgery.

            Dr. Stephanie still has tens of thousands of dollars in student loans she’s paying off, even though she’s in her late 30s. After all, when she finished her final fellowship at age 33, she was $250,000 in debt before her career even started.

            So how can Dr. Stephanie keep her business moving with a good cash flow? How can she afford to hire an extra person to man the front desks, or ask the insurance company for more timely payment, or afford the newest diagnostic machine?

            Simple: she charges $900 for a blood test.

            It’s a fast and easy way to get money coming in.

            The longer I wait, the more suspicious I become. It also makes me question the larger cost we are ALL paying for health care. Are all the doctors “churning” the blood tests? Is it all one big blood churn? If every visit requires a new blood draw, how much extra cost is it adding to our health care system?

            I then write a different story in my head, where the blood test is justified. Some specialties rely on a lot of blood tests. A pregnant woman gets her blood drawn on every visit to the doctor. A pregnant woman’s blood reveals a lot about an unborn baby, whom the doctor cannot examine firsthand. Dr. Stephanie is a rheumatologist, so she deals with the diseases of inflammation and pain, like arthritis, lupus, auto-immune disorders, and fibromyalgia. The blood is where she may glimpse your problem. She’s not setting broken bones or dealing with rashes, where the problem is obvious. The blood test may be the best tool she has.

            Then I think that maybe the blood test protects the doctor. Let’s say I’m seeing two doctors in one week. Is my blood on Monday going to be that different than your blood on Wednesday? Can’t the second doctor just get the same blood results from the first doctor? Sometimes they’re using the same lab! But if that first test misses something, that second doctor may end up answering for it later. I can imagine the lawyer asking the questions:

            You mean this medical problem could have been identified with a simple blood test, yet you didn’t order one? Instead, you relied on the blood test done by another doctor’s office, earlier that same week? Why so negligent, Dr. Stephanie?

            Maybe doctors are afraid of being sued, so to cover themselves they get a blood test every time to reduce their risk.

            However, I have another question as I sit in the doctor’s office, twiddling my thumbs: Why don’t they call me with the results? Am I an oddball?

            I guess most people assume that no news is good news, and if there was something wrong with the blood test they’d call...or worse, ask you to come in to talk to the doctor face to face. Maybe I should go with the flow (or blood flow).

            I look around and count six people waiting. Let’s say the doctor sees twenty to forty people a day. Maybe they don’t call because it’s too much of a hassle for them. If a doctor or nurse practitioner called every patient who got a blood test, that’s a lot of time on the phone, mostly to reassure people that everything is normal.

            But I’m still hungry and waiting, and the longer I wait, the more I suspect a churn after all.

            My father was a doctor -- an ob/gyn, and he drew a lot of blood out of women over the years. He got together with four other doctors in the same medical office building, and they invested in a blood lab. That meant that his personal practice got paid a certain amount for drawing the blood and ordering the test, and then the lab made money actually running the tests on the blood. It was a good financial hedge bet. While the insurance company sometimes delayed payment because it objected to how a surgery was done on a particular patient, the payments for the blood tests, and from the lab were pretty steady.

            As I sit, desperate for caffeine and an Egg McMuffin, my mind turns dark and I wonder if Dr. Stephanie and my internist both own a piece of the lab downstairs.

            No, I’m being too resentful. I should give them the benefit of the doubt. They’re being squeezed by the new economy, just like the rest of us.

            I have one more flip flop in me, however.

            I come home and my wife shows me a letter from her doctor announcing he will be charging $500 a year to all regular patients, for maintaining their medical records. The $500 will cover the cost of photo-copying and sending her any records she requests (including blood test result), and also calling her and talking to about her medical condition (including the results of your blood tests). She can opt “out” of the $500 charge, but she’ll need to book a separate appointment to come in and discuss her case. No more free follow-up calls.

            And before she can see the doctor, she’ll need to have another blood test.

            What do you think? Is it all one big blood churn?

            How much extra cost is it adding to our health care system? It seems inefficient and wasteful, but it may be the fat that greases the system so the doctors can keep moving.

            But I’m tired of losing blood and being hungry.

            I am one patient, one consumer -- am I wrong? Is there something I’m missing? 

            I’d love to hear from you!