Three Mothers (revised)

I

Wonder

I was born prematurely. I’m not sure how early I arrived into the world, but I know I was small. Four pounds, thirteen ounces. Small enough, it seems, that survival wasn’t guaranteed because it was 1971 and I was very sick. For the first two months of my life, I was a patient at the University of Minnesota Medical Center in Minneapolis while being treated for an infection in the femur of my left leg. At 4 pounds and 13 ounces, I was small. Having been given up for adoption immediately, I had no birth mother to tell me the tale. Instead, I have three sheets of paper from Lutheran Social Services that spins out a narrative written by an administrator named Jackie, to tell me what I cannot remember.

It wasn’t until I was pregnant with my son that I requested my adoption file. In Minnesota, in the early ‘70s, families were not required to update their family health histories, but my birth mother had provided additional information when I was finally adopted by my birth parents at 16 months. For $60, the narrative I received was surprisingly detailed.

Your mother was an eighteen (18) year old, single, high school student at the time of your birth. … She was physically described as five (5) feet eight and one half (8 ½) inches tall, one hundred and sixty (160) pounds, with brown eyes and hair and a fair complexion. … Her interests were listed as sewing, reading, and swimming.

It’s strange to think of the two months I spent in the hospital as a newborn. Two months. I was perhaps placed under guardianship of the state and I am bewildered by the idea that I, just a newborn, was no one person’s property. Or no one’s personal property. (Motherhood, I now know, is a state of constant conflict between keeping and shedding. This boy is mine. This boy is his own. My birth mother surrendered.)

Who fed me? A bottle, no breast, I guess. Who took on the responsibility of my safety? Did a nurse think of me when she returned home after a long day of work, when she poured a drink, or tucked her own children into their beds? Who insured that the doctors took great care with my care? Was there an advocate assigned to my case who might consider multiple medical options, to say yes or no, to regretfully but convincingly say, yes, you can do that procedure, if you think it is for the best?

I’d always believed I was born with the infection. In fact, I’m near certain my adoptive parents told me just that time and again, and it’s become my answer anytime I’m asked about my limp, about my scars. “I was born with an infection in my leg.” But Jackie’s letter seems to imply something different, that the bacteria was introduced into my bloodstream, took residence in my femur after my birth, by an errant pinprick perhaps.

One report indicated you developed jaundice and another letter indicated at the time of transfer to the U of M you had experienced sepsis, were premature as well as being diagnosed with osteomyelitis, an infection in your left leg.

I had been so clear my whole life that I’d been born prematurely due to the infection, but with the letter, my understanding of the events around my birth has become slippery. It’s possible my parents did indeed tell me that, but the reality is that anything I know about the first sixteen months of my life isn’t anything more concrete than the messages passed during a game of Telephone.

I was told the doctors were concerned the infection had spread, and I remember also being told they had to test all of my bones, including my skull, for other locations of infection. When I was little, I checked my body all over to find where they might have done the checking, looking for evidence like suspecting an alien abduction. I imagined my head shaved bald; I imagined flaps of skin. Most likely I had needle aspirations. I know that now, but I imagined a greater invasion. I am just thankful amputation was not necessary, which the internet tells me is always a possibility when a long course of antibiotics isn’t effective.

Maybe the when is irrelevant, and it doesn’t change the question I’ve always wondered about: did she know? My mother? It’s safe to assume my prematurity was the source of some alarm, even if my illness didn’t occur until days later. Did she know that her baby might not be well, and did that matter when she made her final decision not to be my mother?

When I was well enough, I was placed in a foster home and named “Lezlie.” Jackie’s chronological rendering of this time is somewhat unclear so it’s difficult to know the order of these two events. I find it hard to believe that I had no name at all before being placed with a foster family, so was it a social worker who named me? Was it standard procedure, to pick a name for the unowned, like assigning Jane Doe to a identity-less and lifeless body, or picking a name for adoptable animals at a shelter? I wonder what it’s like to choose a name for a child who is not your responsibility, to turn that child toward the future with the name Lezlie with a “z”? I wonder what version of myself I might have become had I remained Lezlie?

Via her narrative, Jackie is flattering: “the LSS social worker described you as a “beautiful baby” and that you were doing well in foster care.” And, in a letter dated October 4, 1971 the LSS social worker described you as, “small for her age” but that you were doing well in care and had a “tremendously happy, charming personality for a baby.” Then as now, my seemingly genetic inclination toward positivity worked in my favor. In early 1972, my foster family renamed me Stephanie and planned to adopt me, until their circumstances changed. My adoptive parents would later tell me that the father got sick and the family could no longer keep me. Jackie’s pages tell a different and possibly more tragic variation of the story.

You remained with your first family until August 1972 and then that prospective adoptive family’s situation deteriorated to the point where they were unable to care for you. According to the records, your pre-adoptive father experienced some mental health issues for which he was hospitalized and he then passed away in September 1972.

I feel sad for those people who must have been suffering, suffering at the same time as caring for me (well? not well?), who must have thought I was a good idea until I wasn’t. And what must it have been like for the toddler I was, who hadn’t yet had a family, to have to say goodbye to a mother and father when I was taken away?

Two more foster families cared for me, Jackie reports, until I was placed with my adoptive family when I was nearly a year and a half old. I was told many times by my parents that I “came with” two big black garbage bags full of toys, some with “Stephie” written on masking tape to label them as mine. One of those families must have decided I was more of a Stephanie than a Lezlie. Perhaps that detail of the story was meant to reassure me that I had been loved, treated well, and maybe even spoiled with toys, toys that belonged only to me. (Or were there so many kids in the foster family that we had our designated toys? Did a social worker label my toys when I moved to the next foster home?)

My mother changed my name to Sally because, she said, she didn’t want me to be nicknamed, “Stuffie.” Considering my childhood allergies, she made the right choice. She chose Sally because she had been a first-grade school teacher and the Dick and Jane books were old friends to her. I disliked the name when I became old enough to care as young girls do, resentful that I’d been robbed of a far more interesting name, one with an “i” waiting to be adorned with a stylized heart. (It was the 80s, after all.)

But overall, I was always conscious of the generosity with which my adoptive parents welcomed me, a child whose health issues would be a considerable financial and emotional drain on them over the years. My early illness would manifest itself as an ever-shortening left leg. Had I not had multiple leg-lengthening surgeries — one when I was in 1st grade, a series of operations when I was 10, and a final series the summer before I went to college — my left leg would be somewhere around 6 inches shorter than my right. My father had an 8th grade education and a job with the county; my mother had become a stay-at-home mother when my brother, three years my senior, was adopted at five days old. I wonder sometimes, if they could have predicted how much the lack of money from the hospital bills that no doubt increased with the increasing complexity of my surgeries would press down on our family, would they have taken me in, made me their own, knowing my cost? But then I stop wondering, because there is no question. My parents were good people who were often good parents too, even when circumstances made it difficult for them to be so.

I’ve never had any yearning to look for or meet my biological mother. I’ve always just been thankful to have found a safe place to land, the locus of a pretty typical childhood. And I was lucky to have a mother for the twelve years I had her. It’s like I made a deal with my adoptive parents before I even knew I was signing on the dotted line: you take me in, and I take you in, and we will become us, no take-backs.

Or maybe my lack of curiosity about who my biological mother is stems from a kind of adaptive independence. Maybe I learned before I even knew how to learn, when I spent those hours and days in the hospital, months in foster care, that I would always, in some way, be alone, my own representative. Or maybe I’m afraid of the instant intimacy that may be required of me by reaching out to the woman who birthed me, when intimacy is difficult for me even when earned. What if she doesn’t meet my expectations? Though I suspect the truth lies more in a fear of rejection, or maybe worse, disinterest: I am a middle-aged woman with a special needs child; she let me go once, what on earth could we offer her?

Still, my adoption was never a source of insecurity in the way it was for my brother who often didn’t share that information, even with girlfriends. Being adopted, it seemed to me, meant that I was wanted, more so than that I hadn’t been.

A letter from the county social worker in August 1971 explains your birth mother’s wishes. She was enrolled and planned to attend a vocational school. Further, she did not plan to marry your alleged birth father and therefore, felt adoption would be in the best interests of both you and her.

It’s a decision I think I would have advised her to make if I had been her friend then. Motherhood has been an uncomfortable role for me since my son was born. In fact, I wasn’t sure I wanted children, but I made a choice. I’m unsure now, had I known about Noah’s disabilities early, that I would have chosen to give birth to him. Everyone makes tough choices in the “best interest” of both parties. What would mine have been had I known about the seizures, the hospital stays, the sadnesses. Jackie closes her story with an update from 1973:

It was also learned … that your birth mother had completed vocational school nurse’s training and was employed as an LPN.

I am impressed she followed through. Proud of her, even. I spent a lot of time being cared for by nurses while I was hospitalized, and I’ve spent a lot of time grateful for the care nurses have given my son. I bear her no ill will, only the hope that she had a happy life and no anguished thoughts about the daughter she would never see grow up.

Still, I wonder what happens when a baby has no mother, no father, no touchstone for the first year and a half of life? Did I imprint on no one? Attachment parenting advocates closeness, but to whom was I close? Who did I want to be mine? Who helped me learn to walk? And when I did, who did I want to catch me? How often did I need that which wasn’t there to be given? How does that track down the line of baby-me’s life into my adult life? We are told the first three years of life set a pattern, determine tendencies. I can’t be angry because whatever I am, I am resilient, and maybe that too came from those days when a blanket may have slipped off my baby body and there was no one there to slide it up to my shoulders, tuck it under my hips, and soothe me with a kiss on the forehead.

Now that I’m a parent, and now that I’m no longer young and neither is she, I do wonder if I am my biological mother’s one unanswered question. If she is still alive–only 64 by my count–does she sit, even just for a moment, when the morning light is a certain way and she feels the press of memories, if her baby had the kind of good life she must have wanted for me, if it had been the right decision to say goodbye to the body she had built with her own body, the baby she fed with her own blood, and (I believe) loved in some way, in the right way.

II

Wait

My mother sat beside my hospital bed for nearly five weeks. Each day she arrived early, walking from her bare-bones lodging across the street from the hospital, and idled straight-backed in the room’s lone orange vinyl chair with angular brown wooden arms, held vigil as we waited for the doctors to slowly pull my left leg apart. She absorbed every resentful blow my 10-year-old self could deliver. She tolerated my tears of pain and of boredom, tears of anger at what she was allowing them to do to me and anger at what unfairness I was forced to submit to. I didn’t bother wondering how she felt. Now I know better. Any parent who has ever held her child while he received a vaccination, or a strep test, or stitches in a wound, knows the anguish, the exhaustion, of cooperating or being complicit, in the infliction of pain. I have no recollection of being empathetic enough to imagine she felt anything at all as she made impossible decisions meant to make me better while also making me cry.

An infection in my femur caused my left leg to grow more slowly than my right, the whole leg like some undernourished conjoined twin to my sturdier right leg. This procedure–to split the bone and attach an “apparatus” to the outside of my leg via pins inserted through the skin, like a dock pillared into water and sand, that was then cranked apart millimeter by millimeter each day until the space between the two separated sections of my left femur grew to 2 inches–was rare in 1981. It took over a month of minute progress to allow my skin and muscle to acclimate to the forced growth. The end goal was a scary proposition for me: another surgery, this one to remove bone from my hip to graph into that gap in my left leg, and for plates to be placed along the bone to keep the graph in place until my bones accepted and assimilated the new addition.

So we waited, my mother and I, for my leg to be stretched, my split skin to mend just to be opened again, skin cross-stitched with black thread like something pulled from the embroidery skeins she brought to my room every day. A crafter and knitter, my mother didn’t often do embroidery, but this needlework was portable and complex, perfect for the minutiae of a long hospital stay. Just a hoop, a square of cloth, limp figure-8s of glossy thread, needles, wooden darning mushroom.

I spent much of those weeks in a large wooden reclined wheelchair, because I wasn’t allowed to sit up, warding off boredom in the children’s lounge doing arts and crafts, eating microwave popcorn–that futuristic 80s treat!–in the dining lounge, neglecting the homework the teachers sent, watching the day’s soap operas, but also wanting my mother to let me take a turn with her embroidery hoop. I so wanted to try my novice hand at the delicate work she performed at my bedside, but she wouldn’t allow me to try, to make a mistake amid her tidy stitches.

It was a large and tricky project, an intricate Christmas tree, and each ornament was a different type of stitch. She had to teach herself each one from the instruction sheet. I remember silver knots like those metallic decorative candies we are no longer allowed to eat. I remember gold threads layered, criss-crossed, to create stars. There was a patchwork puppy in a gift box under the tree, a nutcracker soldier nestled in the branches, and a yellow-haired angel on top. Each night, readying to return to her guest room, she would tuck all of the embroidery paraphernalia back in a worn plastic bag. When she rose from her chair, a cut in the orange vinyl seat was revealed, like a wound that was covered with her presence but opened again each night when she left.

But one morning, she didn’t return to her chair near my bed. My father arrived instead, told me she’d had a heart scare and been admitted to the hospital herself. It may have been a true attack–by the time she died two years later, she’d had several–but at 10 years old, I didn’t understand, or maybe I didn’t want to understand because all I wanted was my mother to be there, in her chair, paying attention to me, paying penance for my pain. Instead, I was the one left waiting to visit her. Maybe my father, or maybe a nurse, occasionally pushed my wheelchair to the third floor of the same hospital to park next to her bed, but I rarely stayed. There was no arts room on her “adult” floor, no colorful smocks on the nurses, no distractions to speed the minutes.

I don’t remember how long she stayed in the hospital, but I managed the rest of my own treatment without her presence by attaching myself to a variety of nurses or candy-stripers like I had attached myself to the teen neighbor-girls who babysat my brother and me at home. I often visited a little boy who had been badly burned. His toddler body was covered in white bandages until they were removed, revealing his brick red skin, shiny as a newly polished floor. He had curly strawberry-blond hair, so sometimes he looked like he was still on fire. I don’t remember his family visiting, his mother sitting vigil as mine had. I was drawn to him, maybe to my own feelings of nobility when I persisted in staying in his room while he cried, which was most of the time. Or maybe I just stayed to witness, finally, a pain greater than my own.

Nor do I remember how sick my mother was when I finally arrived home, miserable in a body cast on my left leg, from waist to toes, during the hot summer. Because of my discomfort and her wavering health–small dark bottle of nitroglycerin always at hand–, my father had air conditioning installed. I wonder now where he got the money to do that when there was never any money to be had. My mother and I had used it all up, trying to get well, be well. But our relationship never recovered. I wanted her to be the mother I wanted, not the one I had. I wanted my life to be the one I wanted, not the one I had. I continued to rage about all the unfairness inflicted upon me. I didn’t know then that my anger was actually my fear.

I was ten that summer when we were both in the hospital at the same time. Then I was 11, then 12, and then she was dead. The last time I was at her bedside was the day before she died. That heart attack had been severe. I suppose they knew. The doctors. Maybe my father. There was nothing they could do. The diabetes she’d developed when very young had taken its toll on her organs so none of the preventative measures to elongate her life could be executed. My brother and I were ushered into her hospital room, and I’m not sure what I expected except that I’d imagined I’d be able to sit next to her as she slept, grasp her hand in mine and wait until she woke like I’d seen in soap operas.

Instead, her bed was raised high, almost arm-pit height. It was no ordinary hospital bed like the ones I’d resided upon. And around her were machines on wheels, tubes and wires strung this way and that like a particularly knotty game of cat’s cradle that kept me at arm’s length. I could barely reach my mother’s hand. There was nowhere to sit. There seemed no reason to be there after only a few minutes, because truthfully, I may have sensed she wasn’t there either.

How long had she been heart-sick? I don’t mean medically. I mean, how long had she known she was likely to die before she could see her children grow into adults? How did she live with the knowing, the waiting? I couldn’t understand when I was young why she was always so thin-skinned. She would fall apart in an instant over nothing. Over my brother and I sparring over what TV program we would watch. Over my dislike of the dinner she had cooked. Over my rude disdain when I came home from school and she asked how my day was and I refused to tell her.

My mother had been older than my peers’ parents and retained a kind of formal idealism that women who lived through a war and believed in God and country and well-behaved children. I still remember so much about her. Her perfectly oval fingernails, the cotton-candy swirl of her brown curls, a fine covering of freckles over her forearms, her small straight teeth and the smell of her breath after her morning coffee. And I carry that plastic-framed embroidered Christmas tree into every apartment and house I have ever lived in, as well as the sense that, unlike the picture, there will always be something started but left unfinished about my childhood.

By the end of my tenth summer, my skin had healed, pale railroad track scars laced my leg, and my bones had knitted themselves back together. Now, at 46, many scars of varying lengths and shapes still graffiti my lower body from the many additional surgeries I would undergo, many of them without a mother to sit by my bedside. The doctors reassured me each time that as a result of all the bone-knitting, my left leg would be even stronger than before. I suppose that’s the theory of hearts as well.

III

Want

12/2/2014

Dear B,

I’m sorry it’s been so long since I’ve written. Noah had a bad November. And that means we all did. On the 6th, he had a seizure when he came down with a bad cold virus. I could tell that afternoon that he was getting sick, and seeing what I saw, I should have given him the Clonazepam he’s been prescribed to prevent him from having a seizure. But I didn’t want to pull the trigger.

I don’t know why I have such a difficult time giving him the medication. How is drugging my child to prevent a seizure any worse than drugging him to stop a seizure? Maybe I don’t trust my own instinct and the seizures force my hand. That way, I don’t have to choose; I just have to do. Any way I look at it, I’m complicit in him having had a seizure, the thing I want least.

A trip to the neurologist and we likely have a new seizure type to add to his many others. The doctor is pretty certain he is having drop seizures, which are bad. Bad, because they are hard to understand and prevent, and dangerous because they are so sudden and unpredictable. There are so many sharp corners in the world once you start looking for them. So the plan was: interrupt the new seizure habit that his brain was forming by putting him on a load of that Clonazapam for 3 days, and then taper it down over 6 days. That might be enough to “reset” his brain. Who knew such a thing was possible?

Noah’s epileptologist, once he read the PA’s report, was so worried about Noah that he found him a bed in the neurology ward. So we are in the hospital now. They will do a 24-48 EEG and after we will talk seriously about inserting a VNS (a nerve stimulator) under his arm, which would act like a pacemaker of sorts to interrupt his seizures without medication. There’s a part of me that would be relieved to have a non-medication-based solution to his seizures; there’s another part of me that feels like once we go down this road, we admit to some kind of failure, a failure of conventional control methods.

12/5/2014

The test results, as always, were inconclusive. The EEG didn’t show evidence of anything new or causal, and the follow-up MRI was normal, so now we look at adjusting his drugs. A new hypothesis is that the polypharmacy–three seizure medications, not counting the emergency Clonazapam–is impairing him. Generally speaking, seizure disorders and epilepsy are best treated by monotherapy, while polytherapy has been shown to improve control in only 10%. So we are going to start a bridge med (4!) called Onfi while we begin to reduce the Felbamate (that I never believed was helping anyway.) They offered to adjust his medications in the hospital more quickly over just three days, but we couldn’t bear the thought of inciting seizures by ripping the proverbial Band-Aid off. Instead we will do a 6-week wean at home. How can we possibly know what’s right? We can’t. It’s an experiment with our child’s brain which offers us no right answers beyond our best effort. It’s best not to think too hard about the fact that no one, not even the specialists, know what to do to help him.

Neuro meds are always an experiment. Or so they keep telling me. All people process meds at different rates, and all meds interact differently when put into play with one another. I want answers but there are none to be had. In Noah’s case, because there is no known cause of his symptoms, it becomes even more difficult to find the right approach. As one doctor puts it, the door to seizure prevention is locked and you need to try a lot of different keys to discover the right one to open it. So it is possible to change Noah’s meds, no matter how many, nor how effective for other children, will not gain us control, the one thing we want most.

12/27/14

A twist to the tale. Noah has been admitted to Children’s Hospital Intensive Care isolation unit. They now think he has Nontypeable H flu with pneumonia, but when we first arrived at the ER they suspected meningitis. We’ve been struggling with Noah’s seizures and medications and health all winter, but things took a turn for the worse the week before Christmas. It was hard to discern just when or how he’d become so sick, but we’d resorted to syringing liquid into his mouth, hoping to keep him hydrated, thinking he’d rouse if we just tended to his symptoms and waited. We stayed home for the second holiday in a row. For a kid who loves presents, he couldn’t muster the energy to open his gifts.

His vitals are stable and they are getting fluids and antibiotics into him, and hopefully food via a tube in his nose. He’s still unresponsive, however, so that’s worrying. The tests they do to stimulate a reaction–pinch his fingernail beds, run a sharp point along the bottom of his foot–aren’t doing anything. He doesn’t even flinch. One of the ER doctors looked at us after ordering a number of scary tests, including a spinal tap, “You do realize that your child is very, very sick?”

12/29/14

We’ve agreed to take him off all his seizure meds, because the Critical/Acute care people suspect he may just be a kid particularly sensitive to “benzos”–the Onfi, the Clonazapam, and even the Diastat we use in seizure emergencies–and may be causing his lack of alertness and the impression of his being sicker than he actually is. The neurologist isn’t in full agreement, but I’m inclined to believe the people who are looking at Noah’s full self rather than just looking at his brain. I continually have to remind myself that we are good parents even when it seems our decisions were putting him in danger instead.

12/31/14

A new year, more of the same–Noah sick, me struggling–, yet more difficult because he’s not himself. He is weak and listless, and not my son. I’m overwhelmed today. The sadness. Tears come easily. I feel as though my hands have been amputated. I want to put them to work to help Noah, but my efforts are completely ineffectual; there is nothing any amount of mothering can do.

1/5/15

Stabilized. He will probably be in the hospital for another week. I’m on my way to New York for work. I can’t believe I’m leaving him, and yet, isn’t this what I have learned over the past 10 years? To live as though I don’t have a dark shadow following me around everywhere I go? One of the hardest parts of suffering is suffering over the suffering. At some point, you have to turn it off, cap the faucet, cut the wire.

1/18/15

Noah is still in the hospital. Day #23. He will be having surgery Thursday to put in a G-tube. The pediatrician at the hospital thinks she’s figured out what’s at the bottom of Noah’s decline: it wasn’t a new type of seizure; it wasn’t the medications; maybe not even the severity of the flu; he has been malnourished. His weakness, and those episodes they thought were drop seizures, may have been because he didn’t have enough calories. So all that extra dosing of the seizure meds? Likely unnecessary. Though maybe it made him too lethargic to eat, unaware he was hungry. I cannot help but wonder what kind of mother I am to have drugged my child to the point of starvation. What kind of mother am I that I have been unable to adequately feed my child or identify it as a problem?

So we agreed he should have the surgery, have a hole put in his belly, carry that scar for life. But if that eases the strain of giving him medication by mouth when he’s sick and provides him with the nutrients he is missing, then it’s the right decision. I think. I hope. I’ve said no every time a G-Tube has been suggested before, and now I don’t even remember why. I sit here and watch him sleep, so small in the middle of his hospital bed like a pearl in an oyster, and I feel utterly incapable of meeting this moment. And yet, for the first time, I believe I will. Because I finally understand something I’ve fought against since Noah was born: this is the life I have, this is the kind of mother I am required to be, and I’m not going anywhere.

Cosmogony II

Most people picture The Big Bang as just that, a big bang. Like a spark and a flame that suddenly brought the universe into being. Energy makes sense. Flipping the light switch on makes sense. But if the universe truly began not from a bang, but from intense pressure that literally pressed the world into being, then how? I suppose it’s why we look to God; the wonders of belief, the wonders of blood, the white and the red. One day, long before we knew Mark has cancer, something happened–his DNA and his environment meet, pressed, bang!–and, lo, he has leukemia.

Maybe there are times in a person’s life that are so combustible that you are fused into another version of yourself. My husband may earn a new life by accepting life from another person, but perhaps he already is becoming someone else. Perhaps it doesn’t take blood to renew the spirit. And perhaps it doesn’t take God either. Perhaps the extreme pressure he is under will change him regardless of the transplant, of the noncancerous cells recreating in his body minutes, days, weeks, and months after. And perhaps the same is true for myself. I wonder, after so much pressure, how much of my previous self is still here? How much of me is memory now too?

Visiting

I was in the hospital for five weeks when I was ten. My left leg was being lengthened millimeter by monotonous millimeter. There, I met an Amish boy who had been injured in a farm accident. I don’t remember much about him, exactly, but my parents befriended his, and in the following year, we visited their homestead, ate jarred meat, and, when dusk fell, watched their many children put on a play from behind a sheet, illuminated shadows made from an oil lamp. I gave one of the youngest girls my favorite doll because the only dolls they had with were hand-sewn, awkward creatures more monster than toy.

I don’t remember what happened to the boy, if he recovered, or even if I spoke to him during our visit to their farm. My mother soon died and there ended our family’s relationship with anyone who required some effort to visit. But I wonder now if the boy struggled to reconcile his startling introduction to modern pleasures amid the unpleasurable at the hospital, if he ever, while back on his farm, wished he could return to those white rooms, to the dings of the nurses’ call button and the rattle of the IV poles and gurney wheels, just to taste some jello and watch TV again.

More often during my hospital stay, I visited a little boy who had been badly burned. His toddler body was covered in white bandages until they were removed, revealing his brick red skin, shiny as a newly polished floor. He had curly strawberry-blond hair, so sometimes he looked to me like he was still on fire. I was drawn to him, maybe to my own feelings of nobility when I persisted in staying in his room while he cried, which was most of the time. Or maybe I just stayed to witness a pain greater than my own.

Examinations

 

(Revised)

 

I

The floors of the examination rooms at the Mayo Clinic were always cold. I kept my socks on until the very last moment. I stayed in the changing cubicle, behind the pale, printed curtain, soft and faded like a child’s favorite blanket that kept the dressing area cordoned off from the rest of the room, until the very last moment too.  Though that meant waiting until everyone had arrived and then pulling back the curtain to reveal my appearance with a screech and clatter as the metal rings scraped along the metal rod. Before advancing into the room, I had to stop and strip off my socks, my bare feet on the cold floor forming a memory that would last a lifetime. My mother and father sat on minimal metal and plastic chairs flush against one wall.  Lined up along the window across from them was the phalanx of doctors who would be examining me.

During the years I did not have surgery, I saw Dr. Peterson twice a year in an examination room on the 16th floor of the Mayo Clinic. During the years I did have surgery, I was there more often. He was the only recurring character during these nightmarish visits (except for the pale nurse who sat at the reception desk and looked like a model with her straight blond hair parted down the center.) An orthopedic surgeon, Dr. Peterson was, I knew, well-regarded, but I didn’t know at the time by whom or for what. All I knew was that ever since I could remember, my parents and I, and sometimes my brother before he was old enough to stay home alone, traveled ninety-minutes to Rochester from our farm near Austin to see him, specifically. To take my mind off the appointment, my parents challenged me to find as many different state license plates as I could in the parking ramp outside the clinic. I suppose it was a small comfort to know someone from Wyoming or New Hampshire had come all the way to Minnesota for help from a doctor like mine.

Mayo was exotic—I remember seeing a family in Indian dress and men in turbans and young girls in Mennonite prairie dresses and aprons for the first time there—and thus terrifying. Why was there something so wrong with me to warrant being a patient at such a place, a place to which people flew over oceans? But Dr. Peterson, everyone seemed confident, was the man for the job, the only doctor in the country, I believed then, who knew how to lengthen legs.

But with Dr. Peterson came that cadre of blue-clad interns and suit-wearing academics who stood behind my famous surgeon with the brown wing-tip shoes and half-moon glasses as he examined me from his perch on a rolling stool, all of them bent forward like vultures peering down on prey.  Each visit I would be introduced to the extra people who followed him into the room, but since I never saw any of them again, and none of them ever spoke directly to me beyond the initial greeting, I never bothered to identify them as people in so much as interlopers to this private exhibit that featured me as the main attraction.

Each exam was the same. I would exit the cubicle, my clothes folded on the wood-grain bench behind me, socks stacked on top, and walk out toward the adults in the room while wearing nothing but a hospital gown with two ties, one behind my neck, the other at my mid-back, and my own underwear. Presenting myself in the middle of the room, I silently waited for instruction. It seemed wrong to proceed without being told what to do, though my next moves were as well known to me as practiced as a dancer’s choreography.

Standing in front of Dr. Peterson, he would take my shoulders and turn me away from him. Then he would open the tie at the middle of my back, take both sides of the gown and drop them off my shoulders, letting it hang down in front of me like a column of cloth so most of my body was bare. I would stand stock-still, unable to move, like Lot’s wife after she looked. Not just because I was nearly naked in front of a group of strangers, but also because allowing this examination, standing still and being studied like some insect pinned to a display board, filled me with a paralyzing anxiety that flooded through my body like ice water and made me near unresponsive. Never did it feel like this was a normal sequence in the life of a normal kid, no matter my age: undress, be instructed, be examined, submit.

All the fight had been drained out of me already in the crying and pleading arguments I had with my unwavering parents that began the day my mother reminded me of the appointment, escalated the night before, and continued through the glass doors of Mayo’s main entrance, its rotating doors sucking me in like a vacuum, summoning me against my will. I did not want to do this, come to this place, and I wanted to be heard.

But I also wanted my parents to say I didn’t have to go. But they never did. Instead, they made bargains. If I just calmed down, we would stop at Perkins for onion rings and a Pepsi, or maybe Long John Silvers. (Austin only had a McDonalds.) They bought me word find and invisible ink puzzle books from the gift shop. Regardless, by then, I had exhausted my resources and could do nothing more than behave.

 

When Dr. Peterson said, walk across the room, I did. Turn and walk back, he’d say, and I would. Stop there, and he would roll closer to me, place his hands on my hips, push and knead, then rotate me and repeat, while I stood with a kind of anxious static in my ears, drowning out thoughts. As I got older and heavier, the fear turned into humiliation, bitter like salt, filling me up with solidifying tears.

Turn and bend at the waist, he would say. And I turned, and bent, and felt every pair of eyes in the room studying my bare back, my cotton-covered hips, my bare legs. Sometimes he took the waistband of my underwear and rolled it under to expose more of my back, looking for the telltale curve of scoliosis. The rest of the exam was performed on the table. I was measured, stretched, compared. The x-rays taken earlier in the day were hung on lighted screens: there I was. My bones, the shadow of my bulk, the unevenness in my legs. There I was, more real than I was in my own live body, and I wanted to own none of me.

I was rarely spoken to. Throughout the examination there was murmuring, but I was the topic of conversation. Dr. Peterson led the discussion, and each member of the group took turns describing his (and rarely her) observations, would utter short fragments of knowledge with conviction, and sometimes offer me a faint close-mouthed smile. But all I heard, as I stood there, sat there, walked there, bent there, laid there, was one word said repeatedly, discrepancy.

Discrepancy. I heard that term used to describe my body year after year, visit after visit. My left leg, as a result of a bone infection before I was born, did not grow as quickly as my right. Everything about my left side from the hip down was smaller, shorter: discrepant. A factual word, not meant as an insult by any of those who uttered it in my vicinity, describing my leg, not me. But when I heard it time and time again, the word clearly indicated I was faulty, inadequate, abnormal.

 

Dr. Peterson performed two complicated surgeries on my legs. The first—so rare that another girl who had the same surgery done appeared on the TV show, That’s Incredible!—was done when I was in third grade and I spent five weeks in the hospital, missing friends as well as missing all the lessons on how to do long division. A foot-long metal apparatus was attached parallel to my leg via four screws that punctured my skin and were anchored to my femur bone, which had been cut in half at the middle. At the end of the apparatus was a dial.

Each day, Dr. Peterson arrived at my hospital room during rounds and turned the dial the barest of millimeters because more would cause too much strain on my muscles and skin. Millimeter by millimeter, for five weeks, my left leg was stretched until my legs were of equal length. Then a measure of hip bone was inserted into the made gap, a strip of metal attached to secure the pieces together, and finally, a body cast molded over me from my toes to around my ribcage to keep me immobile through my tenth summer.

For many days, blood and fluid seeped out of the holes in my skin made by the protruding screws, dampening the absorbent blue sheets the nurses lay underneath me on the bed. When they were soaked and finally removed, they smelled like raw hamburger. Sometimes there was too much fluid and it was suctioned out. Any place they inserted an IV quickly got painful, so it was moved around my hands so often they appeared to have chicken pox due to the scabs. I bathed out of a pan, and peed into a different one. I was checked for bedsores.

When I was released, I wore a body cast from ribcage to the toes on my left foot. I was good at using my crutches and raced my classmates along the school hallways. When the cast was removed, my leg had shriveled, but the lengths of my legs were close to even. I got to wear sandals and tennis shoes. I didn’t suddenly improve at kickball and still ended up near the end of the line in gym class, but I was rid of the awkward, clompy gait that elicited stares as I shopped at the mall. But it didn’t last long, because, again, as I grew, my left leg again lagged behind.  At seventeen, once my body had completed most of its growth, the second surgery was done. Dr. Peterson spoke of medical progress, said they’d long since moved past that slow dial-turning surgery I’d had the first time around. This one would have me out of the hospital in three days.

To prepare for that last surgery, a series of pictures were taken of me so the doctors could determine their surgical plan. After so many years of the same surgery preparation, this process was new to me. For these photos, I was to stand, wearing only the bra I had arrived in, and a pair of provided underwear—triangles of crinkly blue paper connected around the hips with bare elastic that I struggled to pull on because I could no longer wear the largest youth size and I was too embarrassed to ask for something larger—and submit to being photographed from every angle.

I stood passively against the white backdrop, horrified at having to expose so much of my discrepant teenage self, as the man stood behind his camera and snapped, snapped, snapped at the captured moth I surely was.  I quickly looked away when these pictures were hung up during my exam, studied by the tidy Dr. Peterson and the half-circle of people standing behind him. These pictures were not in the anonymous black and white of x-rays, where one’s size is just a hint, a shadow, but in two-dimensional color, flooded unflatteringly with fluorescence. Those pictures were more than an examination; they were a record of my flaws.

After the surgery, I was out of the hospital three days later, this time with no casts, just crutches, and puzzle pieces for legs. This time, they had sawed both of my femur bones in half, took one and one-half inches of bone from my right leg and spliced it into my left. A metal rod was inserted from incisions at the top of each of my hips all the way down through the marrow of my bones. I woke from the surgery with an IV conveying morphine into my arm.  The morphine burned when it traveled from needle to vein, and it quickly became difficult to decide whether my leg pain was strong enough to justify the arm pain from a self-administered dose. The next day I found myself in the PT room, encouraged to walk on two broken legs by a physical therapist I fought against, raving, because I couldn’t believe anyone had the right to make me walk on two broken legs.

I was deconstructed again and again in those exam rooms at Mayo Clinic, then physically reconstructed twice over my lifetime, knitted together well enough to resemble someone whole, yet not at all whole.

 

II

I take my son for exams by the specialists at Children’s Hospital in Milwaukee, where he is undressed, inspected head to toe. The rooms are small, white and well-lit with floor-to-ceiling windows, the light muted by vertical blinds. During this particular visit, a geneticist takes each one of Noah’s fingers and examines the nails, the width of his knuckles, the flexation in his joints, to look for signs of a genetic disorder that might explain his eclectic constellation of symptoms. They judge the distance between his eyes, his hairline, the length of his feet, the feel of his scrotum, the roof of his mouth, the shape of his ears, looking for abnormalities. They find nothing out of the ordinary, no dysmorphic features to point them down a particular genetic path. But that simply makes the mystery of Noah’s seizure disorder and delayed development more perplexing rather than less.

The first six months of Noah’s life had been relatively normal. While he hadn’t been the most mobile baby before birth, and he seemed to have some hyper-reflexes as an infant, only the fact that his eyes never quite aligned as babies’ eyes do soon after birth, gave us any hint of a disorder, a fairly common and fixable one at that. Slowly I came to realize, by watching other babies and watching him, that he was significantly different.

I saw that Noah did not reach up and out to play with the small animals hanging from his car seat handle like other babies did. He couldn’t sleep for more than two hours at a time no matter which magic formula we tried; we even set up a video camera to record in the night, hoping for some hint of what was waking him. And he couldn’t hold himself up on his elbows at three months. The photographer at Sears had to stuff his arms underneath him like he was a rag doll for us to get a picture of him looking up into the camera.  You could tell that she knew there was something different about Noah too. I saw these things, all the signs that my good efforts—losing weight, the prenatal vitamins, the weekly doctor’s appointments, giving up sushi and lunch meat—had guaranteed nothing. I had been naïve to think I had earned special treatment from the universe. Unfortunately fate is not a meritocracy.

At the end of his first year, we waited in a different examination room for our first visit to a neurologist, after Noah had had his first three seizures and missed more milestones than he had met. I held my one-year-old son who had no idea, yet, that being examined was anything different from being adored. I was afraid, not only of the news we might hear about our child, but because I could feel a tingle of subordination playing around the edges of my already-frayed strength. I remembered too clearly being a mere scientific conundrum to the doctors who examined me, and I feared being reduced to the frightened child I had been, instead of holding myself together and being the mother I knew I needed to be.

That day I was grateful when the neurologist walked casually into the room, looked my son over head-to-toe, and pronounced, with contagious positivity: “That’s a good-looking kid you’ve got there.” He went on to say that he’d been doing this for twenty-five years and could tell the really severe cases just by looking at the child, so we really shouldn’t worry too much. For some time after that visit, I hoped that Noah would be one of the lucky ones. I needed to hope, so I did, until the seizures took that hope away.

At each visit to each new doctor, we must reconstruct Noah’s life so far. We reveal our family histories, or, because I am adopted, what there is of mine. I tell the story of my pregnancy, of his birth, of his first days. I tell people that my pregnancy and Noah’s birth were uneventful, but it feels like a lie. I shrug when I say it, like it was all no big deal; but to give birth is the biggest deal, regardless of the child.

I am thankful that Noah will not remember all those rapid-fire appointments, one after another—emergency room, doctor, CAT scan, neurologist, EEG, emergency room, allergist, neurologist, MRI, geneticist, orthopedist, and so on—but of course, that will not always be the case. These kinds of visits to specialists will not end, because the question of why Noah is the way Noah is seems unlikely to be answered since we have done every test science can offer us and received no revelatory results. I fear that the older he gets, the more risk there is that he will face the same deconstruction of self that I withstood as doctors visually dissected me during all those years of my own gauntlet-walking. Every day, in the eyes of so many, my son is different, less than, rather than valued as singular, incomparable.

 

Though I am his mother, I am no different than anyone else who looks at Noah and sees “other.” I have been forced—by love but more so by an instinct for sanity—to forgive his flaws in a way that I could never learn to forgive my own. I have made peace with the part of me that was so bitterly disappointed that she would spend her child’s childhood in doctors’ offices because she spent her own in them. I have humbled myself in the face of this great responsibility, come to realize that his life is not about me, only about him. I have learned to ignore the unconscionable inner voice that perseverates over whether this faulty mother simply gave birth to a faulty child.

The burden of parenting Noah is suffocating because there is no shrugging off the tough stuff. Taking Noah to his appointments breaks my heart each time. He cries, repeating, “done, done” with frantic sign language and abbreviated vocalizations, before we’ve even gone through the doors of the clinic. I cajole, and I demand, and sometimes I let the nurses take over despite his plaintive, “Mama? Mama?” because I am at a loss as to how to force my child to do these things he fears. I too want to say, “done,” and spirit him away to some remote cabin in the woods in some other time where there are no constraints, no obligations, no expectations, a fantasy world.

My parents must have felt the same anguish at each of my appointments. What I saw then as their lack of compassion was no doubt resoluteness, knowing that what they were making me do was in my best interest despite my dramatic protestations. The lesson is not lost on me, and if my parents were alive, I would thank them for being just as brave as they needed to be.

It’s been nearly fifteen years since I saw any doctor about my legs. I still have a metal rod in my left femur, and I still have some sensitivity and lack of strength on that side. But I’ve held together this long, and it will take a significant setback to force me back to an orthopedic specialist. The time will come, I imagine, as age creeps up and my bones break down, for me to be examined again. In the meantime, I count my blessings that I can run, I can walk, I can carry my son. In fact, except for some truths revealed by the scars on my legs and a slight limp when I am especially tired, I might even come off as what I so desired as a child: normal.

There is little about Noah that appears normal now. As he has grown, his oddities have become more obvious. As a toddler, he could be carried; there was no wonky gait to expose him as different. Now, when he walks across a room or an aisle in the grocery store, no matter how slowly, he will inevitably run into something that was not actually in his way. Such is ataxia. I hold onto the back of his collar, gently so he barely notices, to guide him when he veers too far off the path.

The doctors don’t bother showing us the results of his EEGS any more. They have told us time and again that the abnormal brain activity doesn’t tell them anything definitive. Unlike my body, my son’s doesn’t offer options for surgical intervention. We medicate, we prevaricate. The specialists offer us a collective shrug.

Noah has all ten fingers and toes, but he cannot use them dexterously.  Putting a train car on a toy track is an exercise in frustration. Scooping food onto a spoon is a hit or miss proposition; getting the food to his mouth the same. He loves to color, but his squiggles are just squiggles to anyone’s eye but his. He can kick a ball, but will most likely fall on the ground with the ball only inches away. He can have a conversation with me through his few words, sounds and gestures, but few others understand his mixed bag of approximations. Noah loves the things normal little boys love: trains, trucks, dogs, swimming, sandpits, books; but, at seven, the version of these things he plays with better suits a three-year-old. At twelve, he is much the same.

It has taken me years to see my son as more than the sum of his discrepancies. When I look at his baby pictures—all of us so innocent that I feel slightly sickened by our naiveté—in photo albums, or hold his arms down tight as his head is wrapped in gauze to hold tight a plethora of electrodes glued to his head so that specialists can examine what happens in his misbehaving brain, or watch him as he runs excitedly, but so awkwardly, across the grass expanse that circles the local playground, knowing he is being stared at by children and parents alike, I struggle to quiet the child in me who still fears being different, who took the blame for the things that made her different from everyone else.

Noah is not the child I imagined I would raise, and oh have I mourned that child—the one not made up of flesh and blood, but made up of expectations. So each day, I perform an examination on my own heart. When I push past the guilt and the blame and the fear, I sometimes locate the strength I built up to survive those surgeries, those stares, the study of my body, and I think I just might have enough to pass some on to my son too.

Void

It is dinnertime and we have just arrived home from the grocery store. While M empties the grocery bags and I prepare the chicken, N is occupying himself by opening and closing the storage drawer beneath the oven. When we hear a thump, we both look down and he is lying prone on his back like a turtle flipped on its shell. This happens occasionally. When he just loses control of himself and falls backward. He still isn’t always good at sitting even though he’s 2. But he usually cries or laughs, depending on how hard he bumped his head. He’s regrettably used to pain. This time, he is just lying there, stiff, and his eyes are rolled up half under his lids. It is a seizure again, out of nowhere, here when we were doing normal so well. We move N to the living room couch, his head tipped to the right side as it does, a sign perhaps of where the storm brews in his brain. His limbs jerk and his throat throbs with work and foam collects on his lips. Mark sings. I kneel down beside him and kiss his cheek. Wipe his mouth. Watch for breath. This time, his lips are not turning blue. At five minutes, we medicate him. It’s what we’ve been told to do. We do what we’re told. We wait for the sedative to break the seizure’s spell. Don’t think, I tell myself. Don’t you dare feel a thing.

Taking Control of Your Health, a Q&A

Leslie Michelson’s terrific book on navigating the healthcare system, The Patient’s Playbook, is coming out in paperback later this month.

Navigating the realities of the system due to a family medical emergency at the time when the book was released, I found the advice and guidance Michelson offered so helpful that I requested a copy for everyone in my office. At that time, I wrote:

“Within every conversation about healthcare is also a conversation about our mortality. While none of us want to go through chemotherapy or surgery or chronic disease maintenance, one thing is true: if you don’t act as a defender of your health, who will? And with The Patient’s Playbook on your bookshelf, you will have a game plan for turning defense into offense in order to take control of your own healthcare.”

Handing a book on healthcare to someone, and saying “you’ll need this someday” is what you might call a tough sell. People don’t want to think about. But the conversation is important, and with the paperback coming out this month, we thought we’d revisit it.

I sent Leslie some questions, and he was kind enough to answer. This interview was originally posted on 800-CEO-READ’s In the Books site. Below is an abbreviated version of our conversation; please click over to read more of my Q&A with Leslie Michelson.

◊◊◊◊◊

Sally Haldorson: It seems as though in writing this book you’ve a strong commitment to insuring that people realize doctors are human, with as many presuppositions and influences and biases as any professional. In your introduction, you write in regards to the demands on primary care physicians: “No matter how charismatic, empathetic, and effective a doctor is, he or she cannot care for a human being in fifteen minutes.” Yikes! I think most of us can think back to our last doctor’s visit, whether 15 minutes or longer, and wonder just what was missed. How does planting this seed of doubt in the process (dictated by insurance companies) help empower patients? And do you think it is key that you aren’t an MD, so you can raise such questions?

Leslie Michelson: Physicians work very hard to do the best that they can in a world of constraints. They’re under enormous pressures to see more patients, more efficiently, while meeting enormous regulatory and reporting responsibilities. They’re very aware of their constraints, and part of my goal is to make sure that the patients who are the beneficiaries of their services have the same kind of knowledge of the constraints in which the doctors work, so they can better partner with the doctors.

My view is that our system doesn’t have the resources to provide everybody the quality of care that they aspire toward, so we should tap into this tremendous reservoir of 320 million Americans who have the energy and the ability to act as effective consumers, just as they do across the rest of the economy. So, it’s not so much sowing a seed of doubt. It’s informing patients so that they can use their intellect, their energy, their experience, and their intuition to team with their doctors to get better outcomes.

And you see that happening in other spheres. For example, at virtually every school in the country, parents are helping teachers by providing additional resources so they can spend more time teaching students. A lot of people are now do-it-yourself folks for home repairs, so they go to centers around the country, they get online videos, and they figure out how to do home repairs. In the medical profession, patients will get better outcomes if they become more engaged consumers.

SH: You advise that “[f]orging a strong partnership with a caring and committed primary care physician is one of the most important first steps you can take in protecting your health.” Isn’t that easier said, than done? Many of us are forced to see nurse practitioners or physician’s assistants instead of ever getting to see a doctor. I know that my son hasn’t seen his primary neurologist for years now, and while we very much like his physician’s assistant, it certainly has done nothing to strengthen our relationship with his neurologist, and if something traumatic were to happen, that doctor wouldn’t know, hands on, much about my son’s past few years. How do we go about asserting our need for an attention-giving PCP when the system seems to be moving further and further away from enabling such a relationship?

LM: I am an enormous believer in the value of advanced practice clinicians. Nurses, physician assistants, nurse practitioners—they all have high levels of clinical training. They are under-utilized and can be extremely important participants in a properly configured healthcare delivery system in the future. If you’re generally well, and you’re regularly seeing a capable advanced practice clinician, you can get excellent care, because those professionals are trained to identify significant clinical issues and refer them to physicians and specialists.

Our experience has actually been very positive with them. My experience with other similar professionals is also very also positive. Every major law firm in the country has a cadre of talented paralegals. There is no dentist’s office that functions without effective dental hygienists. I’m a big fan of it because I’ve seen it really work. For example, in my personal experience, as I related in The Patient’s Playbook, I had a surgery by the Chairman of Surgery at Yale New Haven, Dr. Rob Udelsman, who had, at every step of the way, Patricia Donovan, RN, who has been his right hand in doing these things for 15 or 20 years. They are a team working together; that enables them together to provide people with the highest quality care. I had a very complex surgery, and although the surgery was done by Dr. Udelsman, the entire experience could not have been as good without Patricia Donovan being at his side. I don’t think that moves us away from having an enduring relationship with a clinician; I think it moves us forward.

SH: My husband, who was diagnosed with leukemia mid-summer last year, was mis-diagnosed with three different issues over 3 months, before taking himself to the ER where he was admitted to the ICU and it was immediately apparent that he had an astronomical white blood cell count. A friend, upon hearing this, said that it’s not unusual for that to happen because doctors don’t look for cancer in an otherwise healthy, moderately young person. But in some cases, it seems, that the new “Google-fication” of self-diagnosing is bringing about a public of paranoids, so if my husband had gone into the doctor asking them to check for cancer because he was feeling rundown, would they have done so? He certainly felt like he was taking charge of his illness by making appointments with his neighborhood clinic, but he never thought it was cancer, so he didn’t push for that diagnosis. Shouldn’t we be able to trust in the expertise of our medical providers to see what we can’t see?

LM: First I have to say, I’m so sorry that your husband had to deal with a misdiagnosis. Sadly, we know that misdiagnoses, delayed diagnoses, incomplete diagnoses—these are major challenges across the healthcare delivery system. The studies that have looked at this problem find that between 40,000 and 80,000 people a year lose their lives because of diagnostic errors. So, I have to say, I’m really so sorry that this happened to your husband. As we discuss this though, what I’m concerned about is the appointments at the neighborhood clinic.

There are two ways to reduce the probability of getting a misdiagnosis. One is to trust your instincts. We all are in touch with our bodies, and we know when something seems to be more significantly wrong than it’s ever been before. Maybe it’s a level of fatigue that you haven’t experienced before, an abdominal pain that maybe you’ve experienced before but is stronger now and has been going on longer. Or headaches that are happening more frequently, and have greater pain, in ways you haven’t felt before. If you have those things, what you need to do is trust your instincts, listen to your body, and take action on it. If the physicians you’re seeing are telling you, “It’s all between your ears, there’s nothing to worry about,” or “Your gut is wrong,”—then go to additional physicians in a timely fashion until you get a diagnosis that sounds right to you.

The second thing to be discussed here is the notion of a neighborhood clinic. Particularly when it comes to primary care, I believe very deeply that you need to have a strong and enduring relationship with an individual physician. That person can see you over time and have the benefit of observing changes in who you are and how you’re functioning. They’ll be looking at you, and they’ll say, “You were here 12 months ago, and it looks to me like you’ve put on some weight,” or “you look particularly pale right now,” or “you’re generally energetic, and you’re looking down and depressed, what’s going on? Talk to me.” Those kinds of observations about who you are holistically can make a difference. They can enable a primary care physician to exercise his or her clinical intuition and identify potentially serious issues earlier.

If in fact your husband had such highly elevated white blood cell counts, he probably had some symptoms. If he had a strong and enduring relationship with a primary care physician, that physician likely would have recognized those symptoms and/or those lab results as being aberrant, and she or he would have perhaps ordered additional blood work, and made the referral to a hematologist, which is what the first person who saw your husband should have done.

You should believe in the capability and the competence of your physicians, but if you don’t—if you have reservations about them—you need to change physicians. But, even if you believe in your physicians, you need to respect your perceptions of your health and your intuition. So, if you’re feeling off, even in a vague way, and the physicians that you’re seeing are incapable of giving you a diagnosis or developing a treatment that addresses it, I suggest you take yourself to a higher level of expertise. Get in touch with an academic medical center, figure out which therapeutic area might be most appropriate, and make an appointment. Bring your medical records and have someone with fresh eyes look at what’s going on.

◊◊◊◊◊

ABOUT THE AUTHOR

Leslie D. Michelson is the founder, chairman and CEO of Private Health Management, a unique patient-focused company dedicated to helping individuals and corporate clients obtain exceptional medical care. You can learn more about Leslie, The Patient’s Playbook, and “The No-Mistake Zone with Leslie Michelson” podcast at www.patientsplaybook.com.