What is normal? Whose definition serves as a standard?
Because my life has been far from what most would consider “normal,” while at
the same time following exactly what others would consider “normal.”
For
starters, I had an encephalocele at birth: a small sac of fluid protruding from
my skull, containing mostly fluid and a negligible amount of tissue. The
protrusion happened to be situated for easy removal, and the doctors duly
(because the existence of an encephalocele belies circulation and drainage
problems of the cerebral fluid) installed a cerebral shunt and warned my mother
(whose only experience with mental disabilities came in the form of her sister
with Down’s Syndrome, and horror stories from her days as a speech pathologist)
that her daughter may have developmental problems, that the presence of the encephalocele
may tell of deeper, more serious and less obvious complications, that there is
a chance her daughter may always need help feeding and bathing herself, and
that she might never walk or talk.
 |
| This is an attempted view of my scar from the encephalocele. Apologies that you can't see it very well, but it's now a tiny lump of bald scar tissue at the back of my head. |
Twenty
years later, they still don’t know much about my condition; very few babies are
born with it, and half of those who do never achieve an IQ above 83. (I looked
it up, and apparently an adult with an IQ of less than 85 has just enough
mental capacity for basic gardening and menial housekeeping…)
My
poor mother was on edge for the next few months. Each little sound or quirk I
displayed that was the least bit unlike her three other daughters, she
immediately questioned. However, I continued to develop normally. (Of course I
did… how many of you mothers of multiple children understand that not one
infant acts exactly like their older siblings? My mom’s problem was not knowing
what a seizure looked like, poor thing!)
As
I grew, I guess the one thing that wasn’t “normal” (or at least wasn’t like my
sisters) was the fact that I was very introverted, and very much into reading.
My oldest sister Dena was the only one who read a lot and wrote some; Paula and
Jamie just went along with her, and did what she told them. It was probably
Dena who most inspired my imagination with her own. She was the one making
movies all the time, the only one besides me who actually wrote a book. My
proficiency with words did not run common through my family. Even before I
could read (and though I did not learn to read until I was five), I distinctly
remember flipping through one of Dena’s books and making up stories about the
illustrations, even though I didn’t have the foggiest what the actual book was
about! Years later, I returned to that same book, and had the most intense
moment of deja vu ever, as I remembered
the stories I had made up when I was four, which were different than the story
I was actually reading then.
I
loved reading books. But I never knew why. I would far rather read a book than
do anything else. When I started taking literature classes in middle/high
school, all of a sudden I knew why I loved some stories and not others. Where
for some people those classes would open the world of literature, they did
different for me. The world of literature was already wide open; what those
classes did was open for me the world of literary psychoanalysis. As if I
didn’t already have enough floating through my head, what with my imagination
and all, I now had the ability to mentally dissect any work, its characters,
conflicts, flaws, and successes. I knew all the terminology, and I reveled in
it. I loved stories for their plot elements and their denouements. I liked
certain stories in a genre for their plot developments and the language chosen
by the author; I disliked others for their misuse of such things. More than
anything else in the world, I wanted to become a writer. What those classes
also did was to help me become a better writer, too. Suddenly, it wasn’t just
about my characters going where I chose, and doing what I wished I could do;
suddenly, they had a purpose, which was more than I could say for myself in a
lot of areas at the time.
All
this time, I lived with a tube in my head that stretched down past my
collarbone and supposedly to my abdominal cavity. I could feel it on my skull,
but really had no idea what it looked like. The only scan of my insides I’d
ever had was when I was 2 days old. My second x-ray ever was when we began
going to a new chiropractor, when I was about 16 or so. It was the first time I
had ever seen my shunt, snaking its stark-white way parallel to my spine on the
negative. I remember thinking it was a growth behind my ear, one that made it
difficult to wear headbands. I knew I didn’t have one on my left side. I knew
that when I had a headache, I could massage the “growth” and it would go away.
When
I was nine, I had a mild febrile seizure. I remember everything about that day;
I remember exactly what I was wearing: my favorite outfit, because it was
purple and had cats and roses on it. (Purple and cats were two favorites of
mine, and what girl doesn’t like roses?) It must have been near my birthday,
likely around Thanksgiving or so. I was wearing the necklace I had gotten for
my eighth birthday, the one that looked like a gold cross set in a gold heart
rimmed with faux pearls. I was watching my younger sister Leanne and “oldest” (but
still younger) brother Joe play the Polly Pocket board game (which incidentally disappeared shortly after this...). My grandparents
were visiting, but leaving then. I remember hearing my Mom call me to say
goodbye to them. I remember falling into a stare that I couldn’t break. I
remember falling over on the couch---
Then nothing. The next thing I
remember is laying on our kitchen counter, while a navy-shirted EMT stood over
me, asking for my name. I had a kitchen towel (slightly damp) under my head. I
could move, but I couldn’t talk. He was so close I could feel his breath in my
face. I blacked out again…
The next thing I remember is
sitting on a bed in a hospital room, wearing a hospital gown, while a nurse
handed me a medicine cup of orange-flavored “children’s” liquid aspirin. I’ve
hated that stuff ever since. Strangely enough, I prefer cherry-flavored. I
don’t mind cough syrup. But the orange-flavored stuff tastes like someone fed
an orange to a cat, and the cat vomited, and they caught 1-2 teaspoons in the
medicine cup.
My sisters tell me I rode an
ambulance to the hospital. Of all the times to be unconscious, that had to be
it. During my first and only ambulance ride. I am still disappointed.
For a while, we were careful, worried
that it might happen again. I continued on with a normal life, still devouring
books and such voraciously, unaware that anything was out of the ordinary.
When I was seventeen, I became the
first person in my family to be away from home for more than a month. I
attended the Excellence in Character, Education and Leadership (EXCEL) Program
in Dallas, TX, which lasted eight weeks. I had never been somewhere without my family. Every chance I got,
I called them, and even if I left a message, it was at least 2 minutes long
every time. I had an amazing time, but I missed my family very much.
It was probably this experience
that helped me decide that I wouldn’t be traveling anywhere to attend college;
I began looking at online colleges. A program called CollegePlus! seemed to fit
the bill nicely: an accelerated program that involved student responsibility
and accountability, while at the same time the flexibility to take as short or
long a time as I needed between tests. All I had to do was periodically drive out
to a designated college to take a credit-by-exam-type test, and in this way, I
earned 105 credits in 2 ½ years—the equivalent of taking 3 college courses at
the same time for the duration of that time period. In fact, perhaps it was
more like 4 courses at a time, because those 2 ½ years also included family
vacations, a few trips to Mexico, and an intense experience that threatened to
change my life forever.
The year was 2008; I was eighteen, just a
month before my 19th birthday. We were hosting another family at our
house, so my sisters and I all moved out to our trailer so they could use our
room. Sleeping out there on little more than a narrow foam pad, I noticed after
a few days that every time I lay in a certain position—normally my most
comfortable position—an inexplicable pressure seemed to build in my head,
rendering it very uncomfortable. I ignored it, simply avoiding that particular
position. I attributed the pressure to the fact that this wasn’t a very good
mattress I slept on, and reasoned that it would all go away once I returned to
my normal bed. I had to remind myself of this more often, as after a few days,
the discomfort increased so that there was not really a comfortable position to
lie in at all.
Finally, our guests left, and I
gratefully sank into my own bed. To my chagrin, the pain did not subside; it
increased. The pain grew so bad, that in spite of taking ibuprofen before bed,
I could not lie flat; I had to sleep propped up. Then the pain increased so
that as I sat in front of the computer to study or even reading a textbook, I
could not focus. It literally felt like a grown man sitting on my head. Not
even walking around, closing my eyes, or any other method I tried to relieve
the pressure worked. Finally, it got so bad that I threw up from the pain in
my head. My mom promptly took me to see the
doctor. (Which tells you how bad and mysterious the pain was; the last time I
had been to the doctor was probably not since just after my seizure) The
physician recommended that we see a neurologist, and the quickest way to do
that was through the emergency room. We went right away.
In the ER, they gave me a room, had
me change into a hospital gown (being 18, I was still in the “children’s”
category; the gown they gave me just barely reached my knees), took an x-ray of
my shunt, (the technicians were both guys—super awkward!) and—glory be to God!—hooked me up to an IV painkiller that
completely broke my headache almost instantly. After this, we finally got to
meet with the neurologist, whom we’ll call Dr. M. He did a few neurological
tests on me (you know: touch your finger to your nose, walk on your heels, walk
in a straight line, etc.), and—being now pain free for the first time in at
least two weeks—I of course performed each test perfectly. He then proceeds to
explain about what he saw on the x-ray. He informed us that in fact, my shunt
was broken in 2 pieces right around the neck area. He said it had probably
happened during a growth spurt some time ago. He asked me if I was in any pain,
and I of course said no, right now,
with the painkiller still in my system, was not experiencing any pain. From
this, Dr. M concluded that he thought I might be “shunt independent”—that my
brain had outgrown its need for the shunt. He gave me a promising diagnosis,
told me that the pain probably would go away after a while, and sent me on my
merry way. The only problem was, I still wondered, “If I am ‘shunt
independent’—then why on earth did it hurt so bad all of a sudden?” Dr. M never managed to answer that question.
The painkiller at least allowed me
to sleep soundly that night, and when the pain began to return the next day, I
could keep it at bay with regular, maximum dosing of both ibuprofen and
acetaminophen, (even Excedrin, if I really couldn’t make it 2 hours between
doses!), and I tried to resume my studies. It was now only a few weeks before
my birthday. In addition, we had a mission trip to Mexico scheduled in
mid-October as well. My dad began to question whether this mysterious pain that
kept me taking pills at all hours and sleeping propped up would prevent me from
going with them. It would be the first one I’d missed (besides the one I missed
while attending EXCEL). What were we going to do about this? Local
neurosurgeons like Dr. M obviously didn’t really have an answer for us. Where
could we turn?
I must pause here and introduce my
brother, briefly. He was the first boy after five girls. More importantly, he
was born after me, and since my condition, the doctors said, increased Mom’s
chances of having another baby with similar defects, they watched the
ultrasounds carefully. The next child after me was a girl and she was a healthy
baby, but the next, a boy—the first boy—they noticed something odd.
“We can only see three chambers of
the heart,” the nurses repeated to my mom. Turns out, they couldn’t see the
fourth chamber because it didn’t exist. My
brother was born missing his left ventricle. This meant that the oxygenated
blood that was supposed to be spread throughout the rest of his body was
backwashing in his heart, mixing with the de-oxygenated blood, and causing the
overall quality of his blood to be much poorer than a healthy person’s blood.
Medicine has progressed to the point where doctors, when they catch such a
condition early enough, they can take measures to save the baby’s life, but a
lot of time, it goes unnoticed. The baby is born and looks healthy for the
first few hours, the parents take it home, and within the first month, it turns
blue from lack of oxygen and dies. In my brother’s case, however, they were
watching for encephalitis, and they caught the heart defect. So, essentially,
my defect saved his life. By the time he was seven, he had undergone seven
open-heart surgeries. He’s got the wickedest scars of anyone I know. And about
this time he began having regular annual checkups with the doctors at Seattle
Children’s Hospital.
One of these checkups occurred
shortly after I began having the headaches, around the end of September. Also
this same day was a party I wanted to go to, an engagement party for one of my
older sisters (and the first one to be engaged). I knew I would far rather go
to the party than to Seattle, but my parents had received the opportunity to
meet with the head of Pediatric Neurosurgery there at Children’s, and requested
that I come. By that time, constant dosing on ibuprofen and over-the-counter
pain meds kept the pain down to a dull ache, but the pressure was still such
that I literally could not see straight, and every time I tried, my head would
hurt worse. I did not protest much.
We met with the head neurosurgeon,
a Dr. A. It was the most insightful consultation we had experienced yet. As it
turned out, my condition happened to be his specialized field of study. I was not just another chapter from his textbook
that he never expected to see in real life. I was a person who had a
condition—albeit a rare one—who needed his help and his knowledge. He gave us
three assignments to do in the following weeks: an MRI with contrast dye (to
see where and how the fluid was flowing in my brain), a lumbar puncture (to
check the pressure of the cerebral fluid in my spinal cord), and—strangest of
all—he wanted us to see an ophthalmologist to check, he said, for something
called papilledema.
I had just had my regular eye
checkup in August. I had perfect vision; I had never had anything but perfect
vision all my life. Every single one of my siblings has had minor variations
between near- and farsightedness, but not me. So why would we need to check for
papilledema, and what was it, anyway?
We worked with the local
neurosurgery clinic (Dr. M’s office) to get the MRI. This meant more hospital
gowns. (I hate hospital gowns now.) We went in to see our regular eye doctor.
She was a little surprised to see us, more so when we tried to explain why. She
sat me down in the chair, dilated my pupils, took one look in my eye, and said,
“I’m going to get another pair of eyes for a second opinion.”
When your regular physician, who has basically watched you grow up, is the one to
seek out a second opinion, you can pretty much bet that it is something serious. And for me, it was.
Turns out, she and the second
doctor both saw beginning, early stages of papilledema in my eye. And what is
papilledema? “Swelling of the tissue around the optic disc, which puts pressure
on the nerves and affects the sight.” And how serious is it? The
ophthalmologist put it bluntly, “If this issue is not resolved, Leslie will
go blind.”
I was shell-shocked; I went from
perfect vision to going blind in only a month? What in the world was happening
inside my head?
The next week, we went in for the
lumbar puncture. They got my back numb (Note: isn’t it the height of irony that
Novocain, the painkiller, stings like peroxide going in? Of course, it was effective, but—still!), and inserted the
needle, testing the initial pressure of the fluid in my spinal cord.
In a normal spinal cord, the
typical amount of pressure is usually somewhere around the low 20’s, like 22-23
or so, with 25 being too high to be usual. The pressure in my spinal cord? A whopping 53. I told the doctors, “Gee,
no wonder my head was hurting!” I
was walking around with more than twice the amount of pressure a normal person should have around the brain!
They drew off enough fluid to bring the pressure down to 15, and I could
literally feel the pressure leaving my head as they did so. It was such
a relief!
We met with Dr. M again after the
puncture. Obviously, he had by now rescinded his previous prognosis of “shunt
independence.” Now we were talking
surgical procedures. For the first time, he showed us the MRI scans of my
brain. The four ventricles of fluid in my brain stood out like white lakes
amidst the grey matter. (For reference, the ventricles of the brain are as
follows: there are two ventricles in the main lobes of the brain, a third right
in the middle, around the cerebellum, and situated back and below that is the
fourth, which connects to the spinal cord.) Dr. M pointed to the narrow
passageway (“aqueduct”) between the third and fourth ventricles, informing us
that to him, the knowledgeable one, it looked a bit too narrow (“stenosed.”) I
listened to him throwing around these very “textbookish” terms, and thought,
“Why does he use these words? Does he expect that I will know what he is
talking about?”
He informed us that, in light of
the results of the lumbar puncture, he was willing to allow that, yes, we had a
problem. He said we had two options, in light of the fact that my shunt was
broken, he didn’t expect that it was working properly, and we needed to relieve
the pressure on my brain somehow. The first option was installing a new shunt.
He told us that the general failure rate for cerebral shunts was somewhere
around 25%. He also said that if we chose this option, he would not feel
comfortable removing the old shunt, as not only was it broken, but parts of it
had calcified (fused) to my collarbone, and he did not want to risk taking it
out and leaving shards of plastic in my body. They would just line the new
shunt up next to it, if we chose that option, he said.
Option number two would be an
endoscopy in my brain, to create a new drainage channel that would bypass the
normal channels entirely. Dr. M said that maybe the “aqueduct” between my third
and fourth ventricles was small from the beginning, hence the encephalocele,
and that the endoscopy would create a new channel leading right from my third
ventricle to the spinal cord. When my dad asked about the risks for this, Dr. M
said that such a procedure ran very close to my hypothalamus—the part of the
brain largely responsible for many things, including short-term memory. I
thought this sounded more scary than a new shunt (even though the 25% failure
rate was a wide margin!), especially since, being in college, I knew I would
need my short-term memory to study for tests and such! Dr. M gave us 2 weeks to
think about it. This was on a Friday, exactly one week before our trip to
Mexico.
My parents brought up the trip to
Mexico, and Dr. M immediately shook his head. “Oh no,” he said, “no matter what
procedure we do, she is definitely not
going anywhere for at least a month!” He sent us home with many worries and
questions, not the least of which was voiced by my dad as we got into the car,
“If the trouble is with the ventricles up in Leslie’s brain,” he queried, “Why
was the pressure so high, down in the lumbar region of her spine?” Dr. M hadn’t
really explained that.
When we got home that afternoon,
Mom e-mailed Dr. A in Seattle and told him about it. I think she probably
figured he’d be able to glance at it later that weekend, but within the hour, she receives his reply.
“The national failure rate for
cerebral shunt revisions is between 8 and 11%,” he informs us, “Here at Seattle Children’s Hospital, I supervised over
200 revisions in the last year, and the failure rate was less than
5%.”
Sort of makes one wonder where Dr.
M got his “25%” figure, doesn’t it? But wait, Dr. A continued,
“I am in the OR this weekend, and I
would be willing to let Leslie be my first case of the day on Monday
morning.”
Great. So now, instead of two weeks to prepare for a surgery, I have two days. And this is no “go into a section of the body where
there is lots of space and take out something small, like an appendix or
something” type of surgery, nor is it the type where there are no major organs, and the doctor can just immobilize the
area in a cast or something to speed recovery.
This is my brain we’re talking
about, people. This is a “open the skull, take a shunt tube out of the brain, feed a new tube into the brain, down through the neck, past the ribs, and coil it
in the abdominal cavity” type of operation.
Two days. That’s all I had to get physically, mentally, and
emotionally prepared for this. Plus, I was still battling headaches and nausea even after my lumbar
puncture, both because my body was no doubt trying to replace the fluid the
doctors had removed, and because it was probably doing so at an abnormally fast
rate. (In fact, even though they put me on medication that supposedly slowed
the production of cerebrospinal fluid, by the time of the surgery, my pressure
levels were already back in the thirties)
We went to church that Sunday
morning, I lasted about an hour before I had to leave and lay down in the car
because of nausea and exhaustion, we came home, my mom and I packed for a few-day
trip, and we drove up to Seattle that afternoon for the pre-op stuff. (Meeting
the OR team, taking a few vials of blood (which meant another hospital gown! I was getting pretty tired of those
things!) Luckily, we got to stay at my mom’s brother’s house, because he lived
only five minutes from the hospital.
6 AM Monday morning, we went into
the hospital for my operation. The anesthesiologist “just happened” to be a
Brit, which I regard as entirely God’s doing, because till now only He knew
that I regard the British accent to be the single coolest accent on the planet.
(Until you try to say something like, “I’m artistic”; go ahead, try saying it
out loud, and you’ll realize what I mean) I also received immense comfort
seeing the door of the OR plastered with a large sign proclaiming “LATEX
ALLERGY.” So at Children’s Hospital, apparently they have an entire OR of
non-latex equipment, meant especially for those kids with latex allergies. One
less thing for me to worry about. (To all you medical professionals who are thinking, "Of course they would!" This is a legitimate fear for me, since it was my own negligence in reminding a new hygienist at the dentist office about my allergy that resulted in near-asphyxiation; since then I've been paranoid of rubber gloves)
Quite frankly, the morning of the
operation, I had just one condition I was concerned about the most. You recall
that the first time I went to Seattle to meet Dr. A, that my sister was having
her engagement party. She was getting married in January, less than three
months away. Therefore, when the surgeon asked me, “Is there anything you’re
worried about?” I immediately looked up at him and asked,
“Just how much hair are you
going to take off?”
I had voiced this to my dad
earlier; he smiled and told me, “Don’t worry, Leslie; I’ll buy you a nice wig
to wear for the wedding.” So comforting, my dad.
The surgeon smiled and promised he
would take of as little hair as he needed to; he reassured me that he
definitely would not need to shave the whole side of my head to perform the
operation. The anesthesiologist came forward and hooked me up to a nitrous
oxide mask and tried to have his assistant put an IV needle for more painkiller
into my hand. She missed the vein, so he had to do it himself. Meanwhile, he’s
chatting his is pleasant, British way all about the history of nitrous oxide. I
take one deep breath, and feel the uncontrollable giggling welling up inside
me. One more breath, and I black out completely.
At
about 1 PM, I come to in the Post-op Recovery area. My mouth is very dry, and I
have new scars with stiff, black stitches in two places on my abdomen and along
the side of my skull. I still have most of my hair. It’s all pulled off to the
left side of my head. Only about an inch-wide strip on the right side of my
head is bald.
 |
| ^^Top view. The curve of this scar is visible when I part my hair on the right. |
They
wheel me into a room of my own, where my mom is waiting. She’s on the phone a
lot, talking to people and telling them how my surgery went. I am hooked up to
an IV morphine drip, but I’m not sure if it’s doing all that much. I don’t
hurt, but probably after the first hour, it wasn’t because of the morphine. The
most that stuff ever did, I think, was make me feel nauseous at the sight or
taste of food. It’s weird having stitches covered by large pieces of gauze all
over my body. I got visits from my mom’s sister-in-law and my dad’s sisters,
who also lived in Seattle. Some friends of ours who also live in Seattle paid
me a visit. I got lots of presents. As the day wears on, I feel better and
stronger.
By
evening, my biggest frustration is the respiration monitor I have that measures
the time between breaths. The morphine drip, for its part, slows down my
respiration, so I can relax for several moments between breaths. The only
trouble is, when I relax like this, the respiration monitor sets off an alarm,
thinking I’ve asphyxiated or something, and it goes off till a nurse comes in
to turn it off. Between that and nurses coming in every four hours to take my
vitals, and every six to give me Tylenol and Oxycodone to take, I didn’t get
much sleep that night.
 |
| This is where the valve from the old shunt (the "pump") was removed. |
Tuesday
morning, I feel great. They take me off a constant morphine drip, and give me a
button that, if I am in pain, dispenses a predetermined amount of morphine. I
never pressed that button once, the reason being that I was very hungry by now,
and as long as the morphine was in my system, I could not eat. Mom and I watch
a lot of TV; laughing makes my stitches hurt. That morning I receive a present
from the hospital gift shop: a gigantic stuffed cat the size and shape of a
body pillow. Clutching that against my chest as I laugh makes it easier on the
stitches. By the afternoon, I am able to walk around, and I feel completely
normal. Dr. A pays us a visit.
He
was very happy at how well I’ve recovered. He said if I felt well enough in a
few hours, he’d let us leave the hospital, though for safety’s sake we should
probably spend one more night in Seattle, just in case something goes wrong.
Then Dr. A speaks the unimaginable.
He
turns to my mom and says, “So, you mentioned that you are going to Mexico
sometime soon; is that this week?”
My
mom, fully aware of what Dr. M had told us, says yes, there is a trip planned,
but of course, she and I are not going.
Dr.
A: “Why not?”
WHAT?
Till now I had all but given up on my chance of going
to Mexico. I was ready for a lonely birthday at home with just my mom. Now, Dr.
A has brought it up himself, and he didn’t have a problem with us going! He
said, “If Leslie feels well enough, I don’t think it would be a problem. The
stitches are secure, I don’t think they’ll fall out. Let me send you with a CD
of your MRIs, just in case you run into an emergency down there.” He then shows
us the post-operation MRI: where once I had large white lakes in my brain, now
there are tiny white pinstripes. I thought, So THAT’s what my brain
is SUPPOSED to look like! Shunt
independent, my eye!
Just
to test, I tried flipping my hair over the bald spot on my right side. With my
part on the left, you couldn’t even see the stitches! I had four scars from the operation. Between them,
there were almost one hundred stitches, I think.
 |
| This picture was taken at the same time as the others, I promise! |
Discharged
from the hospital on Tuesday afternoon. Left Seattle on Wednesday afternoon.
Packed all day on Thursday. Left with my family to Mexico on Friday. Celebrated
my birthday by arriving at our host family’s house by Saturday night. What a
crazy week!
So, I ask you: what is normal? Would you consider me normal?
Is it because you think I look like you? Is it because I conform to your
expectations? Looks can be deceiving. I am just as far from normal as the next
person. Or perhaps you are the one who is not normal, having never experienced
such “coincidental miracles” as I have.
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