I've been keeping this story somewhat of a secret to most of the people I encounter in every day life. For far too long, I listened to voices of fear that I would be judged for it rather than my listening to my true voice that is is
worth sharing. Although you can treat this story and more in my book, Views from the 13th Floor, it is time to share it with the world. My story follows.
One fall morning, only a few weeks following the
devastation we now call 9-11, the piercing sound of my alarm jolted me into
reality. Just five more minutes, I
thought to myself as I rolled over and commenced the internal battle to
convince myself to get out of bed.
I struggled to get out of my warm covers, knowing if I didn’t that I’d
be late to drama class. The morning was calm and cool as the first crisp days
of fall began to hit Pittsburgh, Pennsylvania. I opened my eyes and did a quick
glance about the room. The walls
were white and reflecting the rising sun through the large paned windows
welcoming the new day. My
roommate was curled in a ball beneath her covers in her twin bed on the other
side of our shared room. She was
lucky to still be sleeping. The
old splintered hard wood floors of a deep mahogany hue that nursed the growing
dust bunnies beneath our beds beckoned my lazy feet. I gathered my strength, then threw the covers back and sat
up. It was a Friday and the day
before my mom’s birthday. I had been a little disappointed in myself because I
didn’t make the time to get her something and mail it to her. I really wanted to get her a birthday
present and show her how much I love her.
I stumbled across the less than
smooth hardwoods to our tiny white porcelain tiled bathroom. I commenced my morning routine of
brushing my teeth and washing my face. I was thinking about having to walk across campus or maybe even run,
because I was going to be late when there was a sudden POP, and I had the
instantaneous worst headache of my life hit me like a tiny explosion with deep
impact on the right side of my head behind my right eye.
In the midst of confusion, pain
and fear, all I could think was OW!, OW!, OW! There is no expletive strong
enough to combat the pain I was feeling, and it hurt too bad for any real
cognitive function. All I knew for
sure was that I was definitely going to be late for class. In fact, I was going to miss my class
because there was no way I could go there with this kind of headache. The pain was surging from a central
location like water spewing from a fire hydrant disseminating the pain across a
larger territory and settling into place to stay for a while. (this seems understated – if the pain
was so severe, you must have used or thought in more exclamatory terms: oh my
god or this is the worst headache I’ve ever had or it feels like a bomb is
exploding in my head)
I took two Advils because one certainly wouldn’t do the
trick, and literally stumbled from the bathroom back to my bed, where I fell
into the covers and curled into a fetal position, where I fought off a dark
panic and began to cry. I was crying out loud for a couple of reasons, one
because it hurt that bad, and two because I was hoping to stir my roommate,
Alisha, so she could help me. She must have heard me because she rolled over,
roused out of her pleasant sleep, and asked, “Alexia, are you okay?” Looking
back, I often wonder if it was it a coincidence that she decided to skip class
on that very day, something she had never done before, but I don’t really think
it was luck. Fortunately for me I
had a resourceful Girl Scout on my hands who was calm and prepared to handle an
emergency even if we didn’t know it was an emergency at the time. “I can’t stand it,” I remember
mumbling. “My head hurts so much!” “What do you want me to do? Can I get you an ice pack?” she said.
“You look terrible!”
“Can you call Health Services?” I said. I couldn’t
think of anything else to do. An ice pack was the farthest thing from my mind.
All I could concentrate on was the pain – the persistent, overwhelming sense of
having an explosion in my head, complee with pulsing aftershocks. Why wasn’t
the Advil working? I wondered.
Somewhere, far away, I could
hear Alisha dialing Student Health Services at Carnegie Mellon University (CMU).
“They want me to help you walk
over there,” she told me. “Can you walk?”
“I can’t. It’s too far” I said, moving my head
just a tiny bit back and forth. “I just can’t.”
“Can you get downstairs for
Campus Police?” she asked. “They’ll send Campus Police over.”
“I’ll try,” I answered. While
holding the phone in her right hand, Alisha came to the bed and put her left
arm under my arms to help me up, but I was like a rubber doll. I couldn’t stand
or hold my head up or get my arms and legs working. My legs came out of the bed,
but there was no strength to sustain me as I tumbled down, catching my self on
the edge of the twin bed.
Alisha told Health Services,
“She just fell down. She can’t
walk downstairs,” I vaguely heard her tell them before the room went dark, and
The next thing I remember, two
men were lifting me from my bed and carrying me out of the building. I tried to walk to help, but my feet
and legs would not work. The
stretcher in the ambulance was cold and hard, and even through the pain in my
head I remember wondering when they would put a blanket over me. I lay there looking at the top of the
ambulance and observing all the equipment they have in there, benches, monitors,
tubes and wires and two strong EMTs sitting over me trying to talk to me.
The two EMTs were donned in dark
polos and they sat on my right side looking over me as my head faced the back
of the ambulance. They asked me my
name and emergency contact information.
They asked me what the day was, and I clearly remember telling them,
“It’s September 28th, because tomorrow’s my mom’s birthday.” I’m sure that knowing it was my mom’s
birthday helped me to survive, because I couldn’t lose this battle on her
day. What a horrible thing for her
to have to associate with her birthday forever.
I was really tired, and it was
hard to focus enough to answer their questions. All I wanted to do was pass out, but they insisted.
“Who’s the president?” they
“Slick Willy,” I retorted, glad
to have some sense of humor while in pain even though I answered the question
wrong. They asked me what hospital
I wanted to go to, but my familiarity with the Pittsburgh hospital system was
null. I told them I didn’t
know. Then I remember them saying,
“If it’s her head, we better take her to Presby,” and I was out again. This was
the decision that would ultimately save my life.
When I awoke, I was lying alone
in a dark tube, which turned out to be CT scanner, and I was screaming and
trying to curl up in a ball. I was
alone and in pain and just crying out for help.
Then I heard a voice saying,
“Hold still. Hold still. You have to hold still.”
Was it an angel or a ghost? I
was hurting so bad I couldn’t think of being still, I just wanted to cry and
scream, so I asked the voice, “Why do I have to hold still?” and the voice
replied, “Because we might have to do surgery.”
I said, “On what?” And she said,
“On your head!!”
I thought “Oh, no. I better hold still.” So I pulled myself together and held
still the only way possible, by passing out from the pain.
When I opened my eyes, I was out
of the tube. People were lifting
me up in effort to change me out of my clothes and into a hospital gown. They lifted the dead weight of my arms
over my head and pulled my shirt off and replaced it with the cool touch of a
fresh hospital gown. I then
remember someone telling me something I’d grow accustomed to hearing every time
someone is about to stick you with a needle. “You’re going to feel a little pinch…” I did feel a pinch in
my right arm, a pinch where the scar still remains if I look closely enough for
it, in the bend of my right arm like a tiny freckle indented in my skin.
The next time I opened my eyes,
everything was dark and blurry, and I remember seeing lots of monitors flashing
with green lights with many wires that connected me to them. All I could feel
was a sense of being lost and confused, and I still hurt as badly as ever. Before I had a chance to panic, a nurse
walked over to debrief me on the situation. She stood to my left all clean in her white nurses
uniform. It’s amazing how
comforting the presence of a nurse can be. She stood there and in a calm voice told me that I was in
intensive care and had just awoken from brain surgery to stop a bleed in my
brain. The bleed was from a ruptured
Arteiovenus Malformation (AVM), which is a webbed cluster of blood vessels
where the arteries and veins meet with no capillaries to slow the blood flow, a
problem that allows pressure to build up and potentially burst. Mine did pop, and that was why I was in
the hospital, recovering from brain surgery. Somehow, I still had the presence
of mind to think, “I did get my mom something for her birthday, this year. I
lived.” I felt pretty good about that.
It was small victory number one.
Those little victories ended up being the key to recovery because the
small ones added up to one very large significant victory.
nurse told me that my parents were on the way from Athens, Greece where they
had just moved three months ago, and she said to let her know if I need
anything. I asked her if my
parents would cry when they saw me. She didn’t answer.
parents arrived the next day, and when they saw me, they cried.
From that moment on began the
hardest part of my ordeal, not the surgery itself, but the recovery. I had no idea of the mental, emotional,
and physical challenges I would face.
I had just endured bleed in my brain and a craniotomy. My perception of people with brain
surgery up to this point involved permanent impairment to a severe degree. I was surprised to be awake, much less
feel fairly cognizant considering the situation and the morphine. While I waited for my parents to
arrive, I slept and tried to ignore the massive headache I had when my pain
meds wore off. Whenever they wore
off a surge of fire hit my brain, and I’d cry out for help. Sometimes the nurses wouldn’t hear me,
and I would have to use all my energy to cry harder to get their
attention. Eventually they’d come
to check on me and administer another dose of relief in the form of narcotics. I’ve often wondered why didn’t I have
one f those little buttons that I could punch any time I needed another shot of
relief? I never did find out. At
the time, I was too sick to even ask.
Little did I know until after
the fact, that I had been left waiting in the emergency room with a bleed in my
brain for over four hours, because hospital attendees had decided I was a
drunken college student. Alisha and my Student Life Coordinator sat with me in
the waiting room the entire four hours holding my limped passed out body up in
the stiff wooden waiting room chairs.
They told me the hospital staff kept coming by to look at me and thought
I had the flu or something, until finally one astute person came and looked
into my eyes, and said, “She doesn’t have the flu!” I guess that’s when they decided to see me.
Finally my parents arrived. I remember them walking in through the
glass sliding doors that I faced from my bed, and they stopped dead in their
tracks, raised their hands to their mouths in shock as they began to cry. They were looking at their child in a
hospital bed with dozens of wires coming out of her, an IV drip, and a hundred
monitors gauging her status. When
the nurse changed my bandages they saw the worst of it all. The right side of my hair was shaved
off. My head was the size of a pumpkin with forty-two staples in my scalp
stretched from about the center of my forehead around to behind the bottom of
my right ear, like the stitching on a baseball. The bloody scab formed beneath
the bandages that wrapped my head like a sarcophagus.
Soon after my parents came, a
local priest arrived to give me communion, which I believe has mystical healing
powers. I had been told the 48
hours following my surgery were the most critical, so part of me wondered if
the communion was going to be for healing or for a final sacrament in this
life. He of course didn’t know the
fears running through my scarred brain as he stepped into the intensive care
unit dressed in his somber black robes with a traditionally Orthodox bearded face. He walked up to the left side of my bed
and held up the chalice close to my head.
He dipped the communion spoon into the chalice and retrieved it with
bread and wine sitting in the dip of the spoon. Slowly he pushed the spoon towards my mouth, and I was able
to receive the precious sacrament.
After I took communion, he commenced reciting some prayers to heal and
strengthen me. This was fantastic
as I was receiving the kind of medicine the hospital can’t provide. From that moment, my fears vanished. I simply knew from the core of my being
that I was going to be ok, and I told everyone so.
While I rested, I laid in the
hospital bed feeling this powerful energy surrounding me like an aura, holding
my body in its cocoon, healing me. It was one of the most profound feelings of
my life. It felt God’s two hands
resting on me, healing me. What happened to me over the next few weeks and
months was one of the most unique, beautiful experiences I can ever hope to
have in my life. One by one,
people started to appear. My
brother came up from Houston. My grandparents came from Mississippi. My
boyfriend of the time arrived from Boston. My childhood best friend and her mom came up from
Mississippi. A friend I had sung
with on tour visited me from New York. A friend from boarding school drove down for a visit from
Michigan. My voice teacher drove
from Cleveland to visit me. Visitors
arrived full of love and good wishes.
Each one of them filled me with a bit of strength, and through this
experience I came to realize the power of love. It gives you something to live for, something greater than
yourself. Love filled me with that
inexplicable force to heal.
Visitors were only the
start. From then on, over the next
two months, came a constant outpouring of love through phone calls, cards,
gifts and prayers. Each day we’d
come return from a doctor’s appointment, and we’d have a new package and stack
of cards. One day I got a package
with a huge teddy bear, which I still have, by the way. Dad and I loved on that bear as we
watched TV on the sofa. Someone sent me an Eeyore doll with a little
thermometer coming out of his mouth.
Another day we got a honey-baked ham. You forget how tasty those are until you get to eat one, and
did we enjoy it! We had ham sandwiches and ham with eggs at breakfast. Mom made a ham and cheddar quiche. The thought of that sweet honey flavor
still makes me smile.
My high school biology teacher
sent a card with a praying mantis on the front letting us know that she and her
Bible study group were praying for us.
It was so nice to know that people cared and prayed for us. It’s so easy to feel insignificant in
this big world, that when people let you know they care about you, it fills you
with a new sense of worth.
I was filled up with so much
love to the point of overflowing.
I kept saying that I could spend the rest of my life giving it back, and
it would only make a dent the amount of love I received. In fact, the small town of Greenwood,
Mississippi loved me so much that I wrote a thank you note to the people of the
town. It was published in the Greenwood
Commonwealth as an editorial.
It was the best way I could think of to thank a whole town.
Little by little I regained
strength and made tiny steps forward in my path to recovery. From intensive care, I was moved to a
regular room. They came and put me
in a wheel chair one day and rolled me out of the ICU. I was in my new room for a few days. This room allowed me a little more
mobility and freedom though the food was still dreadful. Mom and dad would cook and bring me
food, but during the hospital stay, we adopted a new tradition of eating Boston
Market chickens. Dad still laughs
when we pass a Boston Market. He always says,” I remember when we ate those
chickens in Pittsburgh. I thought
we’d turn into a Boston chicken!”
From the regular hospital room,
I was moved to a rehab hospital.
This was a big step because I was able to leave the hospital for the
first time as I transitioned by a regular car to the Shadyside Rehabilitation Hospital. I was so excited to achieve this level
of freedom. That day they came and
put me in a wheelchair that was cold and hard to the touch, but I didn’t care. We rolled down to the lobby and out the
front doors where my dad was waiting in my white Honda Accord. I got in the back seat and we drove
off. In about 5 seconds I got so
car sick that I didn’t think I would make it. That freedom ended up slapping me in the face. My stomach that had only recently
started handling solid foods again became nauseated and sour as I held on with
everything I could. Fortunately it
wasn’t a long car ride, and we made it to the rehab hospital in the nick of
time. I carefully got out of the
car into another uncomfortable wheelchair and rolled to the nurses’ counter to check
into my new room. The counter reached
far above my seated head and the nurses hid behind the tall desk facing their
computers. One of the nurses got up
to greet my parents. They
commenced the process of filling out forms on a traditional doctor’s office
clipboard. After a few minutes of
front office patient processing, I was assigned a hospital rom. The nurse walked around the counter and
escorted us through the light pink linoleum hallway to my new hospital
room. Though the hospital was new,
it did not feel all that different to be there because hospital rooms across
the board look relatively the same containing a cold bed the raises up and down
with a remote control, a television, a side table that swivels over the bed to
hold your meals, a plastic telephone on a night stand, a foam cushioned sofa
with plastic and industrial strength upholstery, a window to bring a little
sunlight, and an additional chair or two for visitors.
At the rehab hospital I began
physical, occupational, and speech therapy. When I reported to my first physical therapy session, my
kind therapists welcomed me with a hug and a smile, assuring me in words and
actions that they would do everything in their capability to help me to feel
better and recover without a hitch. My therapists started the first exercise by testing my strength. With a brain injury, paralysis is an
inevitable possibility. They made me
lift light hand weights covered in bright plastic colors and walk up and down
the stairs. All of this helped me
to balance out the noticeably diminished strength on my left side. One day I went down for physical
therapy and they asked me what I needed help with overcoming. I told them that I had no energy to
stand. My therapist looked at me
with a twinkle in her eye and a timer in her hand and told me stand. “Grr,” I thought as I stood and stood for 20 minutes. I may have not have felt happy about it
at the time, but I knew deep down that it was best for me in helping me to get
better as quickly a possible. I
was completely exhausted afterwards, and promptly returned to my hospital bed
for a nap.
One therapy session that stands
out was when the occupational therapists had me perform everyday tasks like
cooking eggs while toasting a piece of bread. They wanted me to be able to multi task and not forget about
the eggs when I went to pull the toast out of the toaster. I knew I was up for the challenge plus
it was a great relief and joy to get to cook, something I really love to
do. I listened to their
instructions and turned to the stove.
I pulled out a skillet and placed it on the dark electric eye of the
stovetop. I turned on the eye and
placed some butter I the skillet.
While the skillet heated, I turned to the white plastic covered refrigerator,
opened the door and pulled out an egg.
I cracked the egg into the skillet and discarded the crumbling white
eggshell into the trashcan. Then I
picked up a loaf of bread off the countertop, unwound the twist tie, pulled out
a piece of bread and placed it into the toaster pushing down the handle on the
side. At this point I turned back
to the egg, flipped it over and let it finish cooking. I pulled out a plate, placed the egg on
the plate and remembered to turn off the hot eye just in time for the toast to
pop out of the toaster, and…success!
These simple every day tasks were all important activities, as my memory
had been compromised as a result of the trauma to my brain.
My speech therapists also worked
with my memory and language skills.
I felt like I had returned to first grade because they had me do several
elementary reading comprehension exercises each time we met. I had to read a short story and answer
questions from memory. The stories
were often about school children or farm animals. Though preadolescent, I completed the exercises and often
found them challenging. In the
end, I credit them for making my memory better today than it was before the
surgery. I have wonderful recall
and am so happy and think of them each time I surprise myself by remembering
something a little far out.
Outside of therapy sessions, I had the occasional visitor
stop by my room, mostly friends and a few professors from school. They always
brought with them great joy and comfort.
My dear French professor came to my bedside one day with a card signed
by all of my French class. My
pals, Lyric and Fritz, came to visit one day, and we laughed about my staples,
saying I was all ready for the Halloween parties coming up. Laughing at myself was one of the nice
little therapies that offered comic relief to the situation. My friend, Mara, arrived one day with a
sweet smelling bouquet of stargazer lilies that offered me much joy and encouragement
through the headaches. Those
flowers remain my favorite to this day. Visitors came and went along with more
calls and prayers. The days
passed, and about two and a half weeks after arriving at the rehab hospital, I
was discharged in record time for the severity of my situation.
I walked out to the car that day
filled with the strength of each day’s progress and success and the compilation
of the small victories. For the
first time in weeks, the sun was shining into my eyes, and I could look up into
the beautiful blue sky. The leaves
were turning all shades of red, orange, and yellow. The cool air surrounded me, and I enjoyed feeling nature
again. We walked through the electric sliding glass doors. Dad was there in my
white Honda waiting for me. My mother and I walked through the doors together,
to the front of the hospital under the covered circle drive. This time I got
into the car by myself, and the ride didn’t make me sick. It was another little victory.
Dad drove us to the apartment
that Carnegie Mellon had provided our family. I got out of the car and carried all the gifts
upstairs. Upon entering the
apartment, I saw mom and dad had been staying there almost since the time they
arrived in Pittsburgh, and they had made it feel like home away from home. We walked from the covered parking
outside into the side door of the circa 1940’s brick apartment building. Inside the building we pushed the
elevator button to go up. We
waited before the elevator door until it dinged and opened before us, inviting
inside. We took a short ride up to
the fourth floor and exited into the hallway. We rounded the corner with our arms full and feeling heavy
at this point, ready to release the things we were holding. We came to our apartment door, and dad
fiddled with the keys to find the right one. He jiggled the door open and let us all inside.
I walked into the apartment
relieved to see carpet instead of plastic linoleum covering the floors. We walked into the living room completely
furnished with a sofa, end table, lamp, television, and coffee table. Mom guided me through the living area
past a small kitchen, and to my new bedroom. When I arrived, I put down the things I was carrying onto my
fresh, soft bed that didn’t have rails on either side or prop up via the
command of a remote control. I was feeling like life was returning to
normal. I promptly took off my
tennis shoes and felt the soft carpet beneath my feet, a welcomed change from
the institutional cold, hard floors of the hospital.
This is where Carnegie Mellon
University came in to save the day.
My beloved university went above and beyond the call of duty to
accommodate my family and me. My parents
were fortunate to be in a situation where they could drop everything to come
take care of me since they had recently retired and moved to Athens. They stayed with me for the next five
months, while CMU provided us with the apartment and helped me get onto a
medical leave of absence for the semester. My parents were even granted campus
IDs so they could use the library, gym, and other school facilities to make
their stay more comfortable. We
all got a chuckle when my parents’ IDs labeled them as “Visiting Scholars”
which was such a far stretch from our reality. We still giggle about that to this day. The best part was that CMU treated me
like someone special, rather than a number. They gave us attention and anything we could have possible
desired without asking us for one penny.
Deep in my heart, I hope to make something of myself, so I can have the
means to give back to CMU. To
Michael Murphy, the Dean of Students at the time, and Carnegie Mellon
University, I am ever grateful.
After we got settled in our
apartment, we started going to physical, speech, and occupational therapy to
help retrain my brain. The
therapists became my friends, and I looked forward to visits with them, though
I didn’t always enjoy the challenges they presented me with during our
sessions. It was hard to
concentrate, and I was often very tired and fatigued. Thinking cognitively was not always something I was
interested in doing. My brain hurt
from making new connections and redirecting activity from the damaged, removed
parts of my brain to new areas of my brain. It was truly exhausting mentally to work with my therapists
and I often felt as if I had just completed the SATs or a statistics exam,
after our sessions. I grew
frustrated when success didn’t come right away. I hated having to work for memory skills that used to come
easily. I’d beat myself up a
little over having high expectations of my own performance level. While I was
going through it all, the frustration did wear on my self-esteem, and I started
to feel a little bad about myself, as if I were a shell of who I used to be. I kept asking my parents if my
personality had changed as a result of the trauma. It’s scary to not know if I came out an entirely different
person, but they assured me that I was still the same girl.
Prescription mediations were
another issue, altogether. In order to help my brain to heal, I was put on a
cocktail of medications including some people try to get as street drugs. I was on the narcotic pain relievers Oxycontin
and Percoset. Then I was on Axid,
a stomach medication to protect my stomach from the pain medications that would
rip ulcers right into my stomach lining.
And the most challenging of all the medications was Dilantin, an
anti-seizure drug that slowed my brain function to prevent seizures and allow
my brain to heal. I hated Dilantin.
It made me feel so groggy, rather than the sharp focused person I
remember being. I always felt
frustrated and confused when I was told that my brain needed to heal because I
had a hard time grasping the concept that a mass of nervous tissue could in
fact heal, but heal it did while the functional parts of my brain took over the
activities that used to be managed by the part of my brain that was removed during
the life saving craniotomy.
The side effects of Dilantin were
brutal. Everyday I woke up feeling
as if I hadn’t slept at all. My
mind could no longer pull into sharp attention and focus. I attended classes feeling foggy and
not really registering all the information I was hearing. I carried my mini disc recorder
with me to my classes, so I could record and listen to my lectures at a later
time. It was hard to have to work
two to three times harder than normal and still not achieve the results I
expected. Through it all, my
professors were phenomenal and accommodating. They all worked with me after class and made sure I had all
the resources I needed to succeed despite my special needs.
One of the other side effects of
Dilantin was a thickening and coursing of the skin and gums. My gums were not too affected, but I
recall looking in the mirror and thinking I had aged ten years over the course
f a few weeks. It was like an
additional rough layer of skin had developed over the soft, supple skin of my
face. My eyes hung heavy and my
forehead crinkled. The skin and
nails on my hands became brittle and irritated.
In effort to resume a normal
routine, I started gong to voice lessons again. Singing is such a physical activity and my muscles were atrophied
from all the trauma and lack of real activity. In addition to making my skin course, the Dilantin thickened
my vocal chords and made my singing voice husky and thick, rather and clear and
agile as I was accustomed. My voice teacher, Mimi Lerner, was patient with
me. She herself understood what it
meant to sing through illness. A
year beforehand, she had had open-heart surgery. She had a huge scar up and down the front of her chest,
which she called her battle scar.
I had one too, now, only it was on my head.
Therapies continued as I
regained strength. It took a while
for my immune system to build up.
I caught so many colds that year and even got the flu twice. My body was completely taxed. For a long time I’d have to get ready
in the morning in waves because every activity wore me out so much. I’d get up, shower, and nap. Then I would have breakfast, put on
makeup, and nap. Then I would
attend a class or go to the hospital for some sort of appointment, and nap.
Coming out of the surgery, I was
working almost completely except for a slight muscular deficiency on my left
side and a major loss in vision. The left side was easy to catch up and after a few months my gate was
balanced and normal again along with the strength in my left hand. It was blatantly obvious in one of my
therapy sessions that the deficiency was noticeable when my therapist had me
squeeze a ball that measured the impact of the force. The ball sat in my right hand, and as I squeezed, a number
registered. Then we put the ball
into my left hand and I repeated the exercise, holding my breath with
anxiety. I squeezed and the ball
registered yet another number, but it wasn’t close to that of my right hand. I was stuck with panic and fear,
because I wasn’t sure if a loss in my nervous system could be compensated
for. My understanding of nerve
damage is that it is permanent and irreparable. Before I had a chance to freak out, my therapists were there
to assure me that we’d work on rebuilding the strength on my left side. With
exercise and persistence, and time, my left side did recover.
The vision, on the other hand,
was not so simple. I now had
appointments with a kind of specialist I neither knew existed, nor thought I
would have the need to see in my life, a neuro-ophthalmologist. Visits to this
doctor involved a visual field test where my chin rested on a pedestal, facing
into a white plastic dome tilted ninety degrees so that it was on its side,
sitting up and down. The room went dark while I kept my chin resting on the stoop. My job was to keep my head still and
look at a single point in the center of the dome while tiny white lights
flashed all around. They looked
fireflies flashing in the sky. It
was really beautiful though their importance was far greater than twinkling beauty. I had to punch a button when I saw a
light. After several hundred
lights registered, my field of vision could be mapped.
This test resulted in a crushing
blow to my independence and self-esteem. My vision had been so greatly compromised by the rupture, which happened
on my right parietal lobe on the optical nerve that I was no longer allowed to
drive. The upper left quadrant of
my vision was almost completely gone.
My doctor told me that it was illegal for me to drive, and I watched helpless
as he reported so to the state of Pennsylvania. He gave us hope, however, and said that with time my sight
could repair as my brain healed. We just had to be patient and take the test again in a couple of
months. In a matter of seconds my
life shifted it’s course as I lost some of my independence. I didn’t like feeling helpless and
dependant on others. That kind of
helplessness combined with the mind numbing effects of my seizure drugs etched
away at my self-esteem and sense of self worth as the sediment beneath my
foundation eroded away. I felt
desperate and weak in need of support and strength. So I continued to wait and pray.
One day we went to the hospital
for me to have a very important test.
That day I underwent an arteriogram, a test that shot dye into my brain
so we could take pictures and determine that all of the AVM had been
successfully removed. This test
meant spending the entire day in the hospital, again. I lay in a hospital bed and waited to be prepped for the procedure. A nurse came in and gave me a hospital
gown, which I changed into reluctantly as it brought back too many memories of
the ICU. I put it on, and she came
back to make sure the area where my right thigh met my right hip was
clear. There is a large vein that
runs from your inner thigh all the way up to your brain providing a pipeline of
direct access to the cranial hemisphere.
Some attendants arrived at my hospital door with a wheelchair, into
which I subsequently climbed, and they wheeled me through the bright,
florescent-lit hospital corridors into a large, dark, hollow room.
I was transferred onto a cold
hard stainless steel table with some slight padding there to separate me from
the table. Over my head was a big
white light kind of like the ones in the dentist’s office, and over to the side
were a couple of monitors. Dr. Michael
Horowitz, my lifesaver, came in with a neurosurgery resident that would be
observing the procedure. After
introducing me to the resident, the doctor briefed
me on what was going to
happen. He told me they would numb
the area in the bend between my hip and thigh. Then they would puncture the area and slip a thread into the
vein. This thread would then run
up to my brain. Once in the
cranial area, they would release a dye and take pictures. These pictures would determine if all
the AVM had been fully extracted or not.
If it had, then I was good to go, but if not it meant I would have to
endure another craniotomy.
Dr. Horowitz reassured me,
“We’ll do the test, but I got it all.
I’m positive.” I’ve never
had that level of confidence in anything. I’m still searching for it. His sense of certainty comforted me
going into the test, and he did just as he said. I especially loved the part where he lifted my hospital gown
revealing me waist down to himself and the resident whom I had never met before
this day. I wasn’t thrilled about
putting it all out there for a complete stranger, but I of course wasn’t going
to argue. I just closed my eyes
and waited for it to be over. He
numbed the area, then I felt pressure there like someone pressing a hand on me,
and a few minutes later, the doctor confirmed his previous declaration. The AVM was completely gone, and I
wouldn’t have to have another surgery.
Better yet, he told me that I’d never have to worry about it again.
Following the procedure, I had
to lie still in my hospital bed for eight straight hours as I was at high risk
for a blood clot to release from my leg and shoot straight into my brain
causing a stroke. So I lay there
with a comfortable red plastic bedpan beneath me because I wasn’t allowed to
get up to use the restroom. The
hospital was kind enough to bring me a television on wheels. I watched a couple of movies, but
unfortunately I chose to watch Return to
Me, a story about a sick girl who has to have a heart transplant. I was far too sensitive and emotional
to watch movies about sick girls even if there was love and romance
involved. I sat and balled in my
mom’s arms as she comforted me with that reassurance that only mothers can
give. After a bit, I regained my
composure and adjusted my perspective on the situation.
So despite the debilitating
medications and the bad news about my sight, I did have one major victory
during my recovery, and I have the tiny scar a quarter of an inch long which I
cherish, in the bend of my right leg to serve as a constant reminder of this
amazing day. At that time Dr. Horowitz told me I was going to be fine, and he
hoped he’d never have to see me again!
Who ever thought those words could mean something so good? We were elated with this victory, as I
didn’t think I could take another brain surgery.
Life continued in our newfound
routine of class, therapy sessions and Boston chicken meals sprinkled with
fewer and fewer doctor’s appointments.
During one of my therapy sessions, my therapists, said, “You go to
Carnegie Mellon right?” I
confirmed that I did. They told
me, “There’s this girl here you must meet. She’s a Ph.D. candidate in Chemistry and just had brain
surgery, too.” Soon there after I
met, Kristen Hannah (Roy), and we became instant friends, forming the first
unofficial Carnegie Mellon Brain Surgery Support Group. It was amazing to have her to share
what I was feeling and experiencing.
She provided me with affirmation that she had felt the same things and
that they do get better with time.
I needed the hope that they would, and patience was hard to come by when
you just feel bad and hurt every day.
Kristen and I remain friends to this day. She came with me to Greece to go to the 2004 Olympics in
Athens, and I was able to attend a wedding party for her when se got
married. I’m grateful to have had
her in my life during the recuperation, as we developed a bond that will last a
After a little more time, a few
electroencephalograms (EEGs), and lots of therapy, I returned for another
visual field exam. We waited anxiously
to hear the results. It was like
waiting to see if you passed your final exams or got a job offer. We waited, and then I found out…I
passed! I was legal to drive
again. Hip Hip Hurray! We had another victory to celebrate.
This victory was followed by yet
another blow. After five months of
having my parents care for me, drive me around, feed me, and even bathe me in
he early days, it was time for them to leave. I remember lying on the sofa with my head in dad’s lap as he
rubbed the bald part of my head, stimulating hair growth. He would pat the sprouting hairs and
call me fuzzy head. That’s a good
memory, yet I lay there sad as he and mom packed their bags and prepared for
their departure back to Athens.
I remember when they left
because it was around Valentine’s Day. The bitter irony of having such a sad thing happen on a day that’s
supposed to be filled with joy was too much. Together we drove to the bus stop and waited for the bus to
pick them up and drive them to the Pittsburgh International Airport. It was a beautiful, clear day complete
with sunshine and blue skies and snow covering the ground around us. We waited, and eventually the bus
arrived, all gold and sparkly in the sunlight with the big 28X displaying on a
screen at the front through the windshield above the driver.
I cried like a baby as I watched
them get on the bus, kind of like a kid leaving on the school bus for the first
day of school. I was filled with
the same kind of separation anxiety. They put their luggage in the compartment beneath the bus, got in the
vehicle and sat on the side facing me so they could look at me and wave through
the windowpanes. I was curling in two from the physical anguish of their
departure, and as they pulled away, I turned around and saw a friend’s
face. His gentle presence gave me
the courage to stand. He walked
over to me, and I tumbled into my pal Lyric’s shoulder and cried. I was so glad he was there at the exact
moment I needed him. I cried for a
bit while he patted my shoulder and comforted me. Then I pulled myself together and went back to my dorm room
where this whole story began.
Now with my parents gone, I had
to start putting back the pieces of my life and regain my bearings. I had resumed classes regularly
in the spring of 2002 and had approval for extended test times as my brain
continued to heal. I’d
occasionally hop on the bus down to the hospital for a check up. I even took a trip or two to Boston to
visit the man I had been dating, yet outside of that I was consumed by
loneliness and low self-esteem. It
seems that many of the friends I had were overwhelmed by what had happened to
me. They had paid a visit in the
hospital, but once I was out, instead of checking on me, they disappeared. My boyfriend was out of town. My parents were in Greece, and I was
completely and utterly alone.
Sometimes I felt total despair.
That sort of aloneness held with it a kind of misery and depression I
wouldn’t wish upon anyone.
Through a lot of soul searching
and prayer, I managed to survive and recover emotionally, and the spring
semester of 2002 ended. I had
signed up to go on a summer exchange in the south of France in Aix-en-Provence. My sweet grandfather sponsored my trip,
and going was one of the best decisions I made as part of my recovery. People
rave about the French Riviera for a reason. It is exquisite.
That summer I became a much better French speaker and saw the south of
France while developing a deep love for French culture, cuisine, and not to
mention French lavender. That trip
was a huge step back to my independence. Although my boyfriend and I broke up that summer, the closed door ended
up being an open window to the next things life had in store.
In the fall of 2002, I started my
senior year of college. Shortly
into the school year, I went to the hospital for a check up and another EEG,
which determined my risk for seizure activity. I sat in the cold, white doctor’s
office and touched my thumbs to my fingertips on each hand and then patted my
palms face up and down, rotating them on my thighs. It was a standard neurological test I had become accustomed
to performing. We talked and awaited the results of my EEG, and it came back
clear. I was no longer at risk for
seizures, which meant that the doctors could deliver the greatest news since
the clear arteriogram and visual field test. I was safe to stop the last of my medications, the dreaded
seizure drug, Dilantin. That was
an amazing day. I remember
standing on the sidewalk outside the hospital after receiving the news and
calling everyone close to me to share the great report. The sun was shining into my eyes, and I
looked up at the sky and thanked God. I screamed out my news on my cell phone not caring whom
around me heard. I was too happy
to hold back any emotion.
It seems to me that from here on
you can use your “reporter” voice. We have the essence of what happened and the
rest of the story is how you got to where you are now, including the place that
convinced you to write the book. So, I’m not going to add too much to the rest
While the pieces of my life came
back together, my voice never seemed to fully recover. After struggling through a voice
lesson, my voice teacher actually sat me down and discouraged me from pursuing
a career in opera. It didn’t take
much for me at that point to drop it.
So come senior spring, I was getting ready to graduate and had no idea
what to do in a few months when I finished university. In addition to being career challenged,
the economy was in a recession and hiring freezes were rampant. Panic began to set in place.
I went to Mississippi that year
to visit my grandfather. I sat in
the back bedroom turning over all the uncertainties in my life and little by
little the anxiety consumed me. I
started hyperventilating and crying uncontrollably. The light shining through the windows, which had so often
brought me comfort and joy through the recovery, offered me nothing more than a
pain in my eyes now. I had no idea
what was gong to happen to me. I had lost all sense of direction and
control. I didn’t know what I would do for work
or even what I had a desire to do since opera had consumed my life for the last
six years. My voice was lackluster,
and felt as if I had no compass.
My dear grandfather heard me crying. He came to the bedroom to hug me
and assure me that I didn’t need to worry. He promised me that he and the family would be there for me
and take care of me. His gentle
nature and ability to completely surrender to things out of his control has
always amazed me. He is truly an inspiration. I recovered from that attack and never had another. I
returned to CMU and for spring break that year, I decided to visit my friend,
Kate, and her new husband, Adam, in Dallas.
When I got to Dallas, my fears
melted away in the warm Texas sun.
I felt at home in this Southern style city, plus I had some friends
there. Upon my return to
Pittsburgh, I told my parents that I thought I might like to move there. I wanted to go to a city and a place
that felt like home, but did not feel a push to return to rural
Mississippi. They were curiously
supportive. While we discussed my
future options, I did research on Carnegie Mellon alums in the arts. Sure enough, a CMU alumnus was listed
as the General Director of none other than The Dallas Opera. WOW! I contacted him and told him I was a singer looking for
work, possibly in the Dallas area.
He responded and put me in touch with the Director of Development, Cynthia
After a long, complicated
journey, I graduated in June of 2003 with university honors. At commencement I was sporting an
honors medallion and a drape of the French flag representing my time spent
abroad. My family came to
Pittsburgh for my graduation. They
sat outside in the June sunlight as I crossed the stage to receive my diploma. I remember feeling a profound sense of
accomplishment and pride, as this graduation symbolized not only the completion
of my undergraduate education, but also that of the grizzly endurance race of
recuperation from the AVM.
Following graduation we took a
family trip to Dallas to visit friends.
At the same time I also had the opportunity to interview in the
Development Department at The Dallas Opera. My family and I all agreed that Dallas was gong to be the
right place for me at this juncture in life. I just felt a tugging in my gut to go. I returned to Pittsburgh to fulfill my
commitments to my two part-time jobs in the Carnegie Mellon Student Life Office
and at WQED, the public television and radio station where I had interned in
development and fundraising. In
August of 2003, I decided to go for it.
I left Pittsburgh and moved to Dallas without a job.
I drove over a few days from
Pittsburgh to Nashville, to Greenwood, to Dallas. The first leg of the trip to Nashville took ten hours, and I
was relieved to arrive at the doorstep of a childhood friend who now resided in
Nashville. She and I caught up on our news and went out for a nice relaxing
dinner, and that night I crashed hard into her cozy bed. The next morning, eager to continue my
trip, I hopped in the car and headed to Greenwood to spend a couple of days
with my grandfather. Six hours
later, I arrived and had a nice dinner at the family restaurant. There’s something about being home that
fills you with comfort and courage to carry on. After refueling both literally and figuratively, I completed
the last leg of the trip from Greenwood to Dallas, where I landed at Kate’s
I started taking turns staying
with friends until things sorted out.
First I stayed with Kate, then with my Aunt Callie. Upon my arrival, I let the folks at the
opera know that I had moved. Kate, had started a new job with a bunch of other
young women in the buying program at Neiman Marcus. She sent an email to her class to see if anyone was in need
of a roommate, and we were in luck.
One of her co-workers was looking for a roommate. Kate’s colleague, Megan, and I spent a
couple of days apartment hunting, and before a month was up from my arrival in
Dallas, I secured a roommate, apartment and a job offer to work for The Dallas
Opera. I had survived and come out a better person on the other side.
I can look back now and draw
parallels between the small victories in my journey to recovery and the small
victories in my journey to personal and professional success. Having experienced the joy of the
conglomeration of my successes through brain surgery encourages me that the
victories in the spectrum of life can add up to something powerful as
well. There has to be a higher
purpose to me having this experience other than having me shift gears in my
direction in life. It gives me
perspective and a paradigm shift that I can apply to situations for the rest of
my life. I share this story with
you in hopes that it offers you a little insight and points of view along with
some inspiration and encouragement.
Often, finding your way isn’t fun or enjoyable because that is what it
takes to learn lessons and develop the character you need to fulfill the
purpose for your life. I hope this
story provides you the affirmation that if I can overcome the trials associated
with brain surgery and persevere to try to be successful in business, then you,
too, can strive for good things.
All you have to do is try every day and trust the inner voice guiding