Prologue
Nosocomephobia: the fear of
hospitals. Tomophobia: the fear of surgery. Pharmacophobia: the fear of
medication. I cannot remember exactly when— or how— I developed these phobias.
I cannot trace it back to a certain incident or a particular cause. I had just always
had an intense fear of hospitals, for as far back as I can remember and for a
reason I cannot identify. The sight of needles, stethoscopes, x-ray machines, and
other medical equipment caused me to tremble with fright. No, not even the
sight of them— mere pictures of them were enough to send anxiety creeping into
my heart. The smell of antiseptics triggered a sense of alarm in me. I never
went to the hospital unless it was absolutely necessary or I was forced by my
parents. Whenever I had an appointment, even if it was for a minor issue (like
getting a cast for a broken bone or having a general check-up), I would panic
for an entire week in advance. Actually setting foot inside a hospital made my
heart pound, my mind race, and my body quiver with terror. I could not even
swallow pills; I swallowed my first pill when I was 17. Hearing about diseases,
surgeries, and anything medicine-related sent shivers down my spine. Seeing
that my father is a physician, patient stories were a typical subject matter of
our dinner table talks. Whenever I heard about a certain medical condition, I
could not stop thinking about it for weeks. Dreadful thoughts occupied my mind.
What if I develop this disease? What if I have to go to the hospital? What
if I die from this disease? I would start to imagine that I really do have
the disease and hallucinate about the symptoms. It was a true nightmare. I could
not bear even the thought of surgery, and in particular neurosurgery. I
remember always telling myself, Surgery is the most bloodcurdling thing in
the world. If I ever have to undergo surgery, especially brain surgery, I would
die. Nothing scared me like brain conditions and brain surgeries did.
Little did I know that I was fated to experience them.
The worst part was, not only did I
fear hearing about illnesses, but I was also afraid of learning about the
normal function of the body. When we fear something, we tend to not want to
know about it. We avoid it rather than face it. I believed that the way the
body works so perfectly and precisely is like magic, and once I understood how
it works— once I unlocked its secrets— it would somehow render this magic ineffective.
I thought that as long as I did not understand the way it operates, my body
would keep functioning flawlessly and I would be protected from diseases. Ignorance
is bliss, I thought. Therefore, the study of the human body terrified me.
The study of medicine terrified me. One can guess what my least favorite
chapter in biology class was. That’s right— human biology. I dreaded this topic
in every science class I took. I remember the fright I experienced in fourth
grade when we learned about the heart and lungs. I would often place my hand
over my heart, checking if it was beating. I could not sleep because I thought
I was having heart attacks. There were times when I was convinced my lungs were
failing and I was suffocating. I would knock on my parents’ bedroom door in the
middle of the night and shriek, “I can’t breathe!” I knew that I could not live
like this for the rest of my life, but I did not think I would ever completely
overcome this fear. Well, I did.
The Beginning
My story starts on a fateful day in
July of 2013, when I was 17 years old. It seemed like a normal summer day, just
like any other. I was plopped down on the couch at home, all comfortable and
relaxed— definitely not expecting anything unusual— when I suddenly felt an odd
sensation of heaviness in my tongue. It increased until I could barely move my
tongue. I could not even speak. It only lasted about thirty seconds, then it
was gone and I could move my tongue and speak normally again. It gave me a bit
of anxiety, but I shrugged it off, convincing myself it was nothing. Even so, I
decided to inform my mother just in case. I told her, “Something really weird
just happened to me.” I described it, and she suggested that I see a doctor at
the hospital. The mention of the word “hospital” sent a shudder through me, so
I quickly said that it was probably a trivial matter and that there was no need
to visit the hospital. Thus she instructed me to report it to my father if it
happened again. I assured her I would, but I was certain it would not occur
again. I was right— but only for about a month. My family went to Orlando to
spend a few weeks of our summer vacation there, and throughout our entire stay
I did not experience the tongue numbness, not even once. We visited Disney
World and Universal Studios, and luckily for me, at that time I was too afraid
to ride the big roller coasters (another fear I have now overcome). I had no
idea that I was epileptic, so if I had gone on a roller coaster I would have
most likely had a seizure during the ride. My former fear of roller coasters saved me.
We returned home from Orlando, and I had forgotten all about the strange tongue
heaviness. But it came back to haunt me.
I experienced the numbness in my
tongue a while after we returned from Orlando and once again pushed it to the
back of my mind. A few days later it came back, and then again several days
after that. It kept occurring every three or four days for the rest of the
summer. Its frequency increased, and with every time it happened, it was a bit
more severe than the previous time. At first its duration was around thirty
seconds but gradually increased to about a minute. In addition, the heaviness
would intensify until my tongue would be completely paralyzed. Moreover, a new
symptom appeared: muscle twitches. During the episode, the right bottom corner
of my mouth would tremble uncontrollably to the point where it got painful. At
that time I had no clue that what I was experiencing were simple partial
seizures; I just referred to them as the “strange tongue paralysis.” Even
though they occurred on a regular basis, I did not tell my mother or my father
about them. I had convinced myself that they were not something to worry about
and that they would eventually disappear on their own. The fear had not hit me
yet because I did not consider the possibility of having a condition that
needed to be treated. I subconsciously blocked out these thoughts in order to
protect myself from anxiety.
School started, and I was still
experiencing the tongue paralysis. I was in eleventh grade and had enrolled
into the International Baccalaureate (IB) Diploma Program. I barely experienced
my odd episodes during school; they usually occurred at home. My life went on
normally and my strange symptoms barely affected me. Until the day everything
changed. The day my life took an unfortunate, unexpected twist. The day I
experienced my first tonic-clonic seizure.
When Fear
Strikes
It was the first week of November. We
had a virtual school day— a day when all the students stayed at home and
submitted classwork online. I was sleeping in the morning when I suddenly awoke
to the most extraordinary and terrifying state I have ever been in. It did not
feel like I was fully awake; it felt as if I were in some kind of blurred, dark
dream. Everything was black and silent. Although I was conscious and aware of
myself and my surroundings, I could not see or hear anything. I tried opening
my eyes but to no avail. At first I thought it was an occurrence of sleep
paralysis, as I experience those often. But something just felt different;
something felt awfully wrong. I realized that I could not feel or move the
right side of my body. I began to panic. I wanted to scream but could not even
open my mouth. The paralysis spread until my whole body became completely
paralyzed. I then began rapidly slipping into unconsciousness. It happened so
quickly that it felt like my brain was being sucked into a deep, dark void. It
was the most dreadful sensation I have ever encountered. I genuinely believed
that I was dying, that my soul was being tugged out of my body. I desperately
tried to fight it, clinging onto life. In those last few seconds before I lost
consciousness entirely, I wailed inside my head, No! I don’t want to die!
Please! But the darkness engulfed me.
I woke up again later that morning,
as normal as ever, but did not immediately recall the disturbing event. I climbed
out of bed and went on with my day as if nothing had occurred. As I was
completing my virtual school assignments, I suddenly remembered the unpleasant
episode and my heart leaped in horror. I asked myself, What in the world
happened? What was that? The memory was somewhat hazy to me, and I wondered
if I had dreamed or imagined it. I tried convincing myself that I did, or that
it was just an unusual incident of sleep paralysis. But I could not lie to
myself anymore. I could no longer deny the truth of what was happening to me. I
knew that something bizarre was occurring inside my brain, and although I did
not have the slightest clue what it could be, I knew it was serious. It finally
dawned on me that I was living my worst fear, the absolute thing I had dreaded
my entire life. The moment the reality of my situation hit me, an extreme sense
of alarm I had never known before overtook me. My life went downhill from
there.
From that day I lived the most fearful
time of my life. I lived in utter terror. We fear what we do not understand. What
made this experience all the more frightening for me is the fact that I did not
quite fathom what it was, which lead me to formulate wild, irrational theories.
I think I have a serious brain disease and will soon become permanently
paralyzed. I think I have brain cancer. I think I need brain surgery. I think
I’m dying. Frantic thoughts constantly whirled inside my head. Uncertainty
is a killer. What made it even worse is the fact that I was on my own, with no
one to help me, reassure me, or ease my anxiety. I did not tell a single soul
about what I was going through. I kept it all to myself, enduring my phobia all
alone. I was too afraid to let anyone know. I was too frightened to go to the
hospital. I was too fearful of finding out what was happening to me. I was too terrified
that the doctors would tell me that I needed surgery, or that I had a chronic
condition, or that I was going to die. I would have rather not known and just
suddenly passed away one day. I was even too scared to search up my symptoms
online; I just did not want to know what condition I had. A small voice inside
my head told me that if I did not know— if I just ignored and avoided it all— my
body would heal itself and my strange symptoms would cease on their own. Again,
I thought that ignorance is bliss. Now I know that ignorance is not always
bliss, for we fear the unknown.
I kept experiencing simple partial
seizures, but unlike before, they scared me, because at this point I knew they
were not a matter to simply overlook. But I had somewhat gotten used to them.
What really terrified me is the possibility of experiencing another “complete
paralysis", as I called it— a tonic-clonic seizure.
Battling
Insomnia
Because my first tonic-clonic
seizure occurred during my sleep, I associated sleep with seizures and became frightened
of falling asleep. I went to bed every night fearing that I would have one of
my episodes and never wake up the next morning. Because of this, I developed
insomnia. I began having serious difficulty falling asleep, no matter how exhausted
I was. Even when I did manage to snooze, I would wake up multiple times in the
middle of the night. My sleep was disturbed, troubled, and filled with anxiety.
Sleep became a nightmare for me.
My insomnia hit its peak during my
winter break in December. My family went to Mecca (a holy city in Islam) for four
days to perform Umrah (Islamic pilgrimage). During those days, I did not get a
wink of sleep. I went four consecutive days without a single hour of sleep.
They were some of the worst days of my life. Every time I would begin to doze
off, fear would instantly grip me and I would jerk awake. I just could not
sleep, no matter how hard I tried. I was too afraid to. It was so horrible that
I went to my parents and literally sobbed. I told them that whenever I tried to
sleep, something inside my brain would jolt me awake. They were so worried that
they let me sleep with them. But terror still prevented me from sleeping. I was
in such an awful state, constantly bawling and acting like a sleep-deprived,
disoriented, distressed lunatic that my parents began thinking I might be
possessed or something of the sort.
Thankfully, after we left Mecca and
went to Medina (another sacred city of Islam), I was able to sleep again to
some degree, due to the change of atmosphere. I still had trouble falling
asleep, but it was nowhere near as bad as it was during my time in Mecca. Since
then, I was never able to sleep normally again. My insomnia never left me. To
this day I am still an insomniac, but it comes and goes. This is one of the many
permanent effects of this experience.
My Struggle with
School
Another lasting effect this life
event had on me is my lack of concentration. Since elementary school, I had
always been academically intelligent, achieving the highest grades in school
with minimum effort. However, this started changing in eleventh grade. Over the
year, I found myself losing my ability to focus. I found it very challenging to
pay attention during my classes. I found myself having to put in more time and
effort than usual to study. Eventually I stopped listening in class altogether,
stopped doing homework, and even hardly studied for exams. I lost my motivation
to work and my grades gradually dropped. Even after I had surgery and treated my
condition, my inattention stayed with me. To this day I still have a very short
concentration span and face a great deal of difficulty focusing without spacing
out a short while later. My grades are still relatively low compared to what
they used to be in the past.
Along with my academic performance,
my condition also affected my school life. I feared having my simple partial
seizures during school. I did not want anyone to see me having a seizure. I did
not want anyone to find out about my medical condition. Whenever I felt a
seizure coming, I would race to the bathroom or any empty place and hide there until
it was over. If I was in the middle of class and could not leave, I would place
my head down on my desk or cover my mouth so that no one would see my muscle tremors.
My only concern was that someone would talk to me, as I could not talk during a
seizure. Another matter that worried me to a great extent was presentations. I absolutely
despised them. They gave me anxiety, because I was scared of having a seizure
in the middle of one and not be able to speak. Considering the fact that we had
endless presentations in IB, it was likely to happen. Fortunately it never did.
A lot of times my seizures were stimulated
psychologically. I would remember them and feel anxious and so they would in
fact happen. The thought of having a seizure started triggering panic attacks
in me, especially at school. The moment the thought arrived on my mind, I would
panic. My heart would start racing, and a voice inside my head would start
screaming, What if it happens now?! What if it happens now?! I would
desperately attempt to fight the panic, to fight my thoughts, to fight the
seizure. The more I panicked, the more I would start to feel my tongue getting numb,
until the seizure was upon me. Therefore, I researched about strategies to cope
with panic attacks and found one that was effective. In order to distract my
brain from the panicking and the tongue heaviness, I would pinch the palm of my
hand forcefully until it hurt. This made my brain focus on the pain in my hand
rather than the heaviness in my tongue. I would keep pinching my palm over and
over until the panic attack was over and I relaxed. To today, there are still
times (although rare) when I experience panic attacks and start to think that
my tongue is becoming paralyzed. Because my seizures always began with tongue weakness,
I still get alarmed every time I feel any unusual sensation in my tongue. Although
I am no longer epileptic and I know I cannot have a seizure, the thought of it
still frightens me and leads me to imagine pressure weighing down on my tongue and
preventing me from moving it. I still use the same palm pinching technique to
make the panic go away.
One time a peculiar coincidence
occurred during Theory of Knowledge (TOK) class. Our teacher was absent and we
had a substitute. The substitute had a hard time finding our classroom, as it
was a small classroom in the corner of the library. When he finally arrived, he
said, “This classroom doesn’t even have a number. If a student has a seizure or
something in the middle of class, how would I describe the location of this
classroom?” He was merely joking, but his words gave me goosebumps. I thought
to myself, Don’t say things like that. What if I actually do have a seizure
in the middle of class? Even though I was not aware that I was indeed
having seizures, I knew that seizures are brain conditions, so the mention of
them made me shiver with fright. I spent the entire class panicking. What is
even more ironic is that I saw that same teacher on my flight back from the US
after I had brain surgery there.
Looming Death
The more I thought about it, the
more I became convinced that I had a serious condition. And because I refused
to inform anyone or go to the hospital, I became convinced that I was doomed to
die soon. Things change when one thinks they only have a short time left in
life. I went to sleep every night prepared to never wake up again. I made sure
to say goodnight to every single member of my family before going to bed. I would
go around to everyone and tell them, “I’m going to sleep now so goodnight.” I
did that because it was my way of indirectly saying goodbye in case I died
during the night.
The belief that I will soon leave
this world caused me to stop caring about countless things. I thought, I’m
going to die soon anyway so why should I care? This is yet another effect
of this experience that has left a permanent trace in my life, perhaps more of
a positive one. I acquired this I-don’t-give-a-damn attitude that I have
retained. There are numerous things I used to care about that I no longer
concern myself with. I stopped worrying about people’s opinions of me. I
stopped being as secretive and private as I used to be and began opening up to
people. There are many things about myself I used to hide, such as the fact
that I am very childish. But I stopped pretending to be someone I was not and
started showing my true self. I stopped stressing out over school and caring
about my education (another reason why my grades slipped). I stopped being
embarrassed by situations I used to be embarrassed by before. I stopped being
sad, angry, or irritated about issues that used to upset me. I would tell
myself, I’m going to die so none of this matters. I’m not living for much
longer so I can do whatever I want without worrying about what people think of
me. Although I obviously did not end up dying, I still could not get rid of
this I-couldn’t-be-bothered mentality. Once one loses their care for something
it is difficult to make oneself regain it. But I am glad I became like this,
because I am much more carefree now.
I also became more religious. I
learned to pray on time. In Islam we perform five prayers a day, each at a
specific time. I used to be lazy and pray a while after prayer time has
started, and often times last minute. But because I thought I was dying, I became
afraid that I would die before I had time to pray. Thus I started praying right
when prayer time began, not waiting even a single minute in case my life ended
at any moment. And that is something that has stuck with me until today. Now I
always pray immediately after adhan (the call to prayer).
Finding My Way
out of the Darkness
Although I stopped worrying about a
great deal of things, I still could not get rid of the fear residing deep in my
heart. I became miserable. Even while doing activities I enjoyed, I did not
feel happy. I was too terrified and depressed to feel any joy. The thought of
disease and death devastated me. I did not want to have a severe or fatal
condition. I did not want to die. I had a feeling that I would, but I still refused
to accept it. I became trapped in this constant fearful, dismayed mood for
months. I desperately prayed and prayed to God to save me from this ordeal. Then
one day around March or April, a turning point took place.
I was at home and I passed by the living
room to find my father sitting on the couch, watching an Islamic video on his
phone. I heard the sheikh (Islamic scholar) in the video say something that instantly
slapped me in the face. He said, “When you are going through hard times, you
must accept the fate God chose for you. If you do not accept your fate, you
will only struggle and in the end still suffer the same fate. But if you do accept
it, you will feel a sense of relief and God will reward you by giving you the
fate you desire. Accept what God wants and He will give you what you want.” Those
words struck me and left me speechless. It felt as if God was speaking to me. He
was finally answering my prayers and guiding me. I was truly stunned, and I
realized that the reason I had been so frightened and distressed is because I
could not accept my fate. I knew that I had to accept it. I told myself that I
will accept whatever happens to me. If I recover, I accept it. If I need
surgery, I accept it. If I die, I accept it. But deep down, I knew that it
was not true. All I wanted was to recover, and I could not accept anything
else. I did not truly accept my fate until about a month later.
I was riding the school bus in the
morning, and as usual the bus driver had the radio on. There was an ad playing,
warning about brain strokes. The fear instantly kicked in, as it always did
whenever I heard about a brain condition. But my heart really dropped when the
voice in the ad described the symptoms of a stroke: “Sudden numbness
in the face; weakness in the arm or leg, especially on one
side of the body; difficulty in speech.” I felt an icy chill run down my spine. My
entire body literally froze in shock. The symptoms they listed were the exact
same symptoms I was experiencing. Of course at that time I did not know that
the symptoms of a seizure are very similar to those of a stroke and that I was
actually experiencing seizures. After hearing the ad, I assumed that I was
encountering strokes. The voice went on to caution that any individual who
experiences these symptoms must immediately report to the hospital, for waiting
too long could lead to permanent paralysis or even death. These words rung in
my ears and played over and over inside my head, causing a deep sense of dread to
rush through me.
I sat there for the rest of the bus
ride, trying to grasp what I heard and decide what to do now that I knew what
my condition was. It felt like the ad was a message from God revealing to me
the right course of action to take. And I knew what I had to do. I have to
tell my parents, I told myself. I have to go to the hospital. I can’t
wait any longer. Although the thought of going to the hospital made my
heart thump, I knew that it had to be done. My fear of dying from a stroke
exceeded my fear of hospitals, so going to the hospital and getting treatment
was my only option. The moment I made that decision was the moment I truly
accepted my fate. The reason I refused to get diagnosed and treated before was
because I could not accept that there was in fact something wrong with me.
Therefore, deciding to go to the hospital meant accepting my fate. I fully
embraced it and was finally ready to stop fleeing from it and instead face it. I
was ready to confront my fear of hospitals and diseases, and even death. I sat
there on the bus, my body shaking in fear but my heart burning with determination.
I cannot possibly describe what I felt in that moment. A huge sense of relief
washed over me, making the distress slowly ebb away. I felt very brave, ready
to face whatever I had to face. For once, I felt a flicker of hope. It was as
if I had been holding my breath for a long time and finally released it. It was
as if an enormous burden had been lifted off my shoulders. For so long I had
refused to accept what I was going through, and only when I accepted it had I
realized how simple and easy it really was. The reason I had suffered for months
was because I tried to fight my fate and resist it. If I had accepted it from
the beginning and went to the hospital, it would have saved me all that fear
and pain. But this is what life experiences and mistakes are for; they are for
teaching us lessons we could not have otherwise learned. The most important
thing I learned is that there are times in life when we must give up our
struggle and let go. Sometimes fighting is futile and we must give in and just believe
in the way things will turn out. We must put our faith in God and leave our
fate up to Him. We must accept our fate, no matter how terrible it may be.
On the same day I heard the ad about
strokes, we discussed strokes during chemistry class. We were studying a topic
called Medicines and Drugs, and we were learning about how aspirin is used to prevent
strokes. My teacher described the symptoms of a stroke, and I became even more
convinced that I was having strokes. I felt that the number of coincidences
that happened that day were like little signs from God. Therefore, I went back
home from school determined to inform my parents about my condition. I told
them that I needed to visit the hospital, as I had been experiencing strange
symptoms that I thought were associated with strokes. I described the symptoms
of my simple partial seizures (the tongue numbness and muscle tics) but thought
it was unnecessary to mention my tonic-clonic seizure, as it only happened once.
My father told me that I was definitely not having strokes, for if a stroke is
not immediately treated it may lead to paralysis and other long-term effects,
or even death. He told me that my symptoms were most likely just a result of too
much stress. But he decided to consult one of his neurologist colleagues just
in case, which he did the next day. The neurologist confirmed that muscle
twitches and similar symptoms are most likely caused by mere stress. My mother
who is very precautious insisted that I get an MRI brain scan anyway, so my
father scheduled one for me in July. Little did I know that I would never
attend that appointment, as I would end up getting an MRI scan about a month
earlier at the emergency department.
I began doing deep breathing
exercises and spending more time outdoors to relieve stress, but my simple
partial seizures persisted. One time I was sitting with my twin sister and
younger sister at home when I had a seizure. When they saw the spasms at the
corner of my lips, they laughed and said, “What are you doing with your mouth?”
They did not know that it was involuntary muscle movement. This time, the
seizure was more severe than usual. The right side of my face became paralyzed,
and I started screaming. But it only occurred for a few seconds then ended. My
sisters asked me, “What in the world is wrong with you?” I told them what
happened, but I thought it was due to stress and hence nothing to worry about. Surprisingly,
after I discovered that my condition was not serious, I did not feel the relief
I expected to feel. Something felt off. I thought, Thank God it’s all over.
See, God gave me the fate I wanted. But is it really over? It doesn’t feel like
it’s over. Why do I feel like something is missing? After all that fear and
stress I went through for so long, it’s all over and done, just like that? Wow,
that was really easy. Perhaps too easy, because it was not over just yet.
The Big Storm
It happened in June, on the last day
of school of eleventh grade. I went home that day, excited that school was out
and pumped for summer vacation. My parents were both in Egypt at the time, as
my maternal grandmother had just passed away and my paternal grandfather was very ill in the hospital. My brother had finished his exams
for university and was about to board his flight, leaving Egypt and heading to
Saudi, where my sisters and I were. At around midnight, I went up to my room to
sleep. Just as I was getting ready for bed, I decided to go back downstairs and
talk to my sisters for a bit. I do not know why I went downstairs, but I believe
that God made that happen because if I had gone to bed I would have had my
second tonic-clonic seizure alone.
My sisters and I sat together in the
living room, chatting. Suddenly I felt a seizure coming. At first I assumed it
was a simple partial seizure, because a tonic-clonic seizure always begins like
a simple partial seizure then spreads to the rest of the brain. As usual, my tongue
became paralyzed and my facial muscles contracted. But then the right side of
my face turned numb. This is when my high pitched screaming began. My older
sister yelled, “What’s wrong?!” The paralysis spread to my entire face, and I
lost my sense of sight and hearing. It continued down to the right side of my
body, then to the left side. I could not feel or move a single muscle. I was
completely paralyzed. Again I was convinced that I was dying as I lost all sensation
and control over my body, my vision going black and my thoughts turning into a
blur. But this time, as I plunged into the darkness, I did not struggle. I gave
in and let go. I thought, I didn’t think I would die young. Oh well. And
in that precise moment, as I believed I was facing death and embraced it, I
overcame my fear of it.
This next part of the story is based
on my sisters’ recount of what happened, as I was unconscious and obviously
unaware of the subsequent events. Immediately after my shrills began, my head
fell back against the couch and my eyes rolled up. This is when my face went
numb and I lost my vision, right before I fell unconscious. After I passed out,
all the muscles of my body were convulsing involuntarily. My arms and legs were
jerking abnormally, and I was making odd noises and mumbling nonsense. I also
stopped breathing for a minute and my face turned blue. All three of my sisters
were frozen in shock, as it can be quite alarming to see someone having a
seizure. My older sister became panic-stricken and quickly called my father,
shouting over the phone, “Something happened to Nora! She’s not breathing!” My
father yelled, “Do CPR!” But my sister did not know how to perform CPR. My
mother was sitting with my father, talking to my brother on the phone, who had
just boarded the plane and was about to take off. When my father got the phone
call from my sister, my brother heard some of their conversation and knew
something serious had happened to me. My mother had to end the call, so he
spent his entire flight thinking I was probably dead. My father ordered my
sister to call an ambulance, so she did.
I regained consciousness about ten
minutes later, opening my eyes to see one of the paramedics injecting me with a
sedative. After a seizure one is usually in a sleepy state, and that is how I
was. It felt like I had woken up from a deep, deep slumber, and confusion
shrouded my thoughts. I could not immediately recall what had happened. The
memory slowly came back to me over the next quarter-hour or so. I felt
disoriented and my mind was foggy. I thought I had died, and waking up again
felt like coming back to life. The paramedics put me on a stretcher and carried
me into the ambulance. During the ride, I was in a strange drowsy, numb, and calm
state. Maybe it was the effect of the sedative, or maybe it was because the big
storm had raged at last and was now subsiding. It was as if for the entire
year, something was building up inside of me and had finally exploded, and it
was now over and I was at peace. I knew that henceforth, everything was going
to be fine, as I was no longer fighting alone. The long, lonely, harsh struggle
was finally over. I now had the support of my family and doctors, and I
regretted not confiding in them sooner. As I lay in the ambulance, I did not
think or feel anything. I was not afraid of the seizure I just had. I was not scared
of being in an ambulance. I was not frightened of going to the hospital. I did
not fear finding out about my condition. I did not dread being told that I had
a serious condition or that I would need brain surgery or that I would die. I
was ready for anything life was going to throw at me. Somehow, in that
ambulance, I completely conquered my fear of hospitals, the nightmare that had
haunted me for so long. During that ride there was only one matter I was
concerned about. I could not remember whether I had prayed Isha (the night
prayer) or not, and I asked my older sister (who had ridden in the ambulance
with me), “Did I pray? I can’t remember whether I prayed.” Later I recalled
that I indeed had prayed and let out a sigh of relief.
We arrived at the hospital, where I
had a bunch of tests and scans, including an MRI brain scan, a CT scan, and an
EEG. I was surprised at myself, because these hospital investigations which would
have alarmed me greatly just a few days ago no longer frightened me in the least
bit. There was not a single speck of fear inside my heart. I spent that night
and the following day at the hospital. My brother arrived in Saudi, and my
parents immediately booked a flight and traveled the next day. They all visited
me in the hospital. The neurologist came into my room to speak to me about my
diagnosis. I was prepared to hear the worst news. But fortunately, the news was
not so bad. I was diagnosed with a cavernous malformation (cavernoma) on the
left side of my brain. A cavernoma is a cluster of malformed blood vessels
which develops in the central nervous system and causes seizures. The treatment
plan was to remove it via surgery. Surprisingly, I did not so much as flinch at
the mention of neurosurgery. My parents wanted me to have the surgery at a
really good hospital and wanted it to be performed by a well-known
neurosurgeon, as any error in a brain surgery could result in permanent damage.
Hence I was to have it at the end of July at Johns Hopkins Hospital in
Baltimore at the hands of Dr. George Jallo.
Throughout the July prior to my
surgery, I was on antiepileptic medication (drugs that prevent the occurrence
of seizures) and did not experience seizures again. However, I did visit the
hospital a couple of times. The first time was when I had an allergic reaction
from the antiepileptic pills. I had rashes all over my body and a fever, so the
neurologist prescribed a different type of antiepileptic tablets for me. There
was also a time when I had a severe headache and stomachache, and I vomited.
Again I visited the hospital, for it could have been an effect of the
cavernoma. Throughout that entire month, I did not think about my upcoming
brain surgery. I dismissed all thoughts of it and thus did not feel any fear. I
went about my summer normally, but I was forbidden from performing any activity
that involved excessive movement of my head, such as swimming. I broke the
rules and went to the pool a few times anyway.
Hospital
Adventure in Baltimore
I traveled to Baltimore with my
parents during the last week of July and the first two weeks of August. I was
18 years old by that time. My parents requested a wheelchair for me at the
airports, as they did not want to risk too much movement of my head leading to
headaches or seizures. I hated being wheeled around as if my legs were somehow
crippled and I could not walk. I was outraged and made a huge fuss. To make me
feel better, my parents told me I could buy anything I wanted from the airport
stores. And that is how I met my beloved stuffed chimp, Chu Chu. He was my
support throughout the entire duration of my treatment, and to this day I still
take him with me everywhere I go.
At Johns Hopkins Hospital, I had
multiple preoperative appointments with my neurosurgeon Dr. Jallo, his team of
neurologists, the radiologists, and the anesthetist. I had a blood test, a urine
test, a regular MRI brain scan, a functional MRI (fMRI) scan, a CT scan with
and without contrast, an EEG, an ECG (to confirm that my heart was in good
condition and that it was safe to put me under anesthesia), and other tests.
Each appointment was tiring, but the fMRI scan was especially exhausting. It is
the most wearing thing I have ever done. An fMRI is a type of scan used to
measure brain activity in order to map out which parts of the brain are
involved in certain mental processes. While lying inside the MRI machine, I had
a screen in front of my face. On the screen I was given very specific
directions of certain tasks to perform. For example, I was asked to slightly
move my fingers in a certain pattern, hold my breath for 30 seconds, think of
words that begin with a certain letter (in order to determine which area of my
brain is responsible for language), etc. While performing each task, all other
parts of my body not involved in the task had to be perfectly still. One wrong
move and I had to start the task all over. This is because when the patient
moves a certain part of her/his body, a specific area of her/his brain lights
up, and that is how the radiologist determines which part of her/his brain
controls a particular process or movement. Therefore, all other factors have to
be controlled precisely otherwise the results will not be accurate. The scan
lasted three hours in total. It might not seem like it, but lying absolutely motionless
for three hours is extremely grueling. It is more taxing than running a
marathon. Not to mention how tight and dark the space inside an MRI machine is
and how deafening the sounds it makes are. By the end of it, I reached my
absolute limit. I was literally drained of all my energy. Every second was
torture, and I thought I was about to lose my mind if I did not get up and
move. Never before had I reached such a point of physical and mental
exhaustion. Nevertheless, I developed a love for MRI scans. I love being in
that dim, cramped space, like I am in my own world. I also enjoy CT scans,
although they have a much shorter duration compared to MRI scans. I especially
love the contrast, which is a liquid injected into the patient’s blood that
flows through the veins and arteries, appearing white in the CT images. The moment
the contrast is injected, one feels their entire body heating up. It is quite a
scary sensation, as if intense heat is radiating from every inch of one’s body.
But to me it feels very pleasant.
I had so many blood draws and IV
injections that I cannot count how many times I had been pricked with a needle.
I have tiny veins so it was always difficult for the nurses to get the needle
into my vein on the first try. One time a nurse attempted three times in different
places but still could not manage to do it and had to call a few other nurses
to try. I ended up with Band-Aids on both hands and arms. Another time a nurse punctured
my arm but did not hit my vein so she had to dig the needle around inside my
arm until she found the vein. Because of these interesting experiences, I grew
to love needles.
I underwent neurosurgery on July 30,
2014, which is around one year after I first started having seizures. One day
before the surgery, the doctors stuck these discs in various places around my
scalp and forehead to mark certain areas of my brain. I was instructed to keep
them on until the surgery. I hated them, because out on the streets people gave
me weird looks and probably thought I had brain cancer or something. On the day
of my surgery, I went to the hospital early in the morning, accompanied by my
parents. There, I changed into a hospital gown and sat on a hospital recliner,
ready to be wheeled into the operating room. That is when I really registered
the significance of what I was about to undergo. I had been avoiding the
thoughts and blocking them out, so the fact that I was going to have brain
surgery had not fully sunk in until that moment. In those few minutes before
the operation, reality hit me like a wave crashing down on me. Even though I no
longer had a phobia from these sorts of things, brain surgery is a big deal and
it is only natural that anyone about to go through it would be at least mildly anxious.
I suddenly felt afraid and did something I did not expect to do; I cried. The
tears began spilling down my cheeks and I could not stop them. I had been so
calm and collected about everything up to that point, and I just had to let it
out. My parents reassured and soothed me. My father requested that the doctors inject
me with a drug that is given to make patients forget the last few minutes
before surgery, as those moments can be very unpleasant. Therefore, I cannot
remember what happened immediately prior to the surgery, which actually
irritates me because I do not like memories being taken away from me, whether
they are good or bad. I am a person who highly values her memories, even the most
insignificant ones. I cannot remember going into the operating room or the
moment I was injected with general anesthesia and lost consciousness. The last
thing I remember is sitting in the preoperative holding area, silently crying with
fearful anticipation.
My procedure went as follows: First,
a small portion of my hair was shaved off in the area being treated. Then, an
incision was made in my scalp (the skin and muscles were cut apart). After
that, a hole was drilled in my skull. Next, the cavernoma was excised. Finally,
the flap in my skull was secured back in place with titanium plates, the cut in
my scalp was stitched back together and sealed with skin glue, and bandages
were placed over my incision and around my head. The surgery lasted around five
hours, but to me it felt like I had been out for only a few minutes. When I
regained consciousness, the first thing I was aware of was the throbbing pain
in my head. It felt like a hammer was pounding down on my skull. I felt weak
and worn out and could not move an inch of my body. I thought, The surgery
is already over? That quick? I opened my eyes to see the blinding white
lights on the ceiling of the operating room. The nurses spoke a few words to me
but I barely heard them. The anesthesia was still wearing off and I was not
fully alert yet. The nurses lifted me off the operating table and placed me onto
a mobile bed. I was taken to have a postoperative MRI brain scan, then I was
transported to an ICU room where I spent the rest of the day and night. My body
felt heavy and I could not focus on anything going on around me. The following
day I was moved from the ICU to a regular hospital room.
My hospital stay lasted about a week.
It took me around one week to recover enough to leave the hospital, about
another week to be well enough to travel back to Saudi, and a few months afterwards
to fully recover from the lingering effects of the surgery. The first few days
following the surgery were hell. I did nothing but lay in bed, moaning. I had
compression bandages around my legs to prevent blood clotting which can occur
post-surgery due to inactivity. I could barely lift or turn my head. I could
not eat or drink and had to live on IV fluids for a few days. The first solid
food I ate after the surgery was Jell-O, and chewing it was extremely painful
for my jaw muscles. I could not speak, not just because I could not move my jaw
muscles but also because the coordination between my tongue, teeth, and lips
was impaired and I could not articulate sounds properly. When I spoke, the
words came out sounding funny. In addition to that, my language was affected,
and I had some trouble putting my thoughts into words. Every time I wanted to
say something, I would forget the word for it, and trying to think was too much
effort. I could not get up, not even to use the bathroom. The first day I had
to use a urinary catheter, which is a tube inserted into the bladder that
collects urine and drains it into a container at the side of the bed. After
that the nurse removed it and I used a portable toilet for a while. Every time
I needed to use the toilet I had to call the nurse and she would bring the
toilet to me. I could not use the bathroom until a few days later, when I was
able to walk again. I could not wash or brush my hair for days due to my
inability to move as well as the bandages around my head. It got all tangled
and puffy and I ended up cutting it as short as a pixie cut. I had physical
therapy sessions to relearn how to walk, climb stairs, balance, and even make
facial expressions, as the muscles of my face were weakened. I remember the physical
therapist making me stand in front of the mirror and practice smiling and
frowning. I could not sleep at night from the searing pain in my head. I was
only allowed a dosage of pain medication every two hours, and sometimes it was
not enough. At times I called the nurse and complained about the pain and
begged for pain killers, but she would apologize and tell me that I had to wait
until the next dosage. For the remaining time I would know nothing but pain,
and I would lay there and moan from how much it hurt, counting the minutes
until my next dose. All medication was administered to me through an IV line. I
also had an arterial line in my radial artery, which was used to monitor my blood
pressure during the surgery. It was removed shortly after the surgery, and I
had to have a pressure dressing wrapped around my wrist for days. Inserting a
catheter into an artery is extremely painful, so my wrist hurt for a long time.
The scar from the arterial line did not disappear until about a year later.
I was finally discharged from the
hospital and went back to our hotel, but I was not fully recuperated yet. I
still had difficulty moving some muscles and walking, as the slightest movement
of my head sent pain shooting through it. My right hand was still weak (since
the surgery site was on the left side of my brain it mostly affected the right
side of my body). My incision was still in the process of healing, although I
removed the bandage. I was still on a lot of medication, including pain
killers, corticosteroids (to reduce swelling), antiepileptic tablets, and
others. The side effects of the corticosteroids were the worst. They increased
my insomnia and caused me to have very vivid nightmares, such as drowning,
being attacked by sharks, and being burned alive. They gave me horrible mood
swings. I was constantly in a bad mood, ordering my parents around and yowling
at them. I even threw a pillow at my mother one time. I acted like such a
spoiled brat, throwing tantrums over the smallest matters. The corticosteroids
also greatly increased my appetite so I was ravenous all the time. I craved
everything from sushi and potato salad to ice cream and cookies. My parents
would buy me a sushi lunch box everyday. We would go to the supermarket and I
would toss bags of potato chips and buckets of ice cream into the shopping cart.
One of my mother’s friends visited me and brought me a huge two-foot-by-two-foot tray filled with all the types of delicious cookies one could dream of,
including chocolate chip, white chocolate, oatmeal, peanut butter, and raisin
cookies, which I devoured in a couple of days. I have literally never in my
life eaten more than I have eaten during that phase.
Aftermath
After my follow-up with Dr. Jallo
and his approval, my parents and I flew back home. I left Baltimore with a
heavy heart, as I had grown attached to it and to Johns Hopkins Hospital and
all my physicians and nurses. It is the place where I overcame my phobia and
developed a passion for hospitals, and for that reason I will forever be
grateful to it. Baltimore will always have a very special place in my heart.
By the time I returned home I was
fully recovered and could resume my daily activities. However, there were a
number of long-term effects that lasted quite a while. I still had to be cautious
when moving my head, as Dr. Jallo instructed me not to lean it forwards for too
long. I still had mild weakness in my right hand. My incision was still healing
and I could not use any harsh chemicals on my hair. The skin glue over my incision
took months to completely rub off. It also took months for the shaved hair to
grow back and I had a bald spot for a while. To this day the hair in that area
is still very thin. Another permanent effect is that my skull at the surgery
site is a bit uneven due to the titanium plates, and I can feel small bumps and
a shallow dip. Normally, people would hate permanent scars and minor
deformities like these, but I do not. I love them, because they are proof of
the battle and an everlasting reminder of it. Rather than making me feel
imperfect or flawed, they make me feel special.
I was still prone to seizures for a
few months following the cavernoma resection and hence had to continue the
antiepileptic medication. I took it for about five more months, until my follow-up appointment in December. I began my senior year of high school while still
taking the seizure pills, called Keppra. I went through a phase which I termed
the “Keppra phase.” During this time I was experiencing some bothersome side
effects. I had feelings of irritation and frustration for absolutely no reason.
At school I was annoyed by everything and everyone. At home I was moody. I was
just constantly unsettled and I could not understand why, which drove me
insane. Thankfully these troubled emotions and thoughts disappeared after I
stopped taking the Keppra medication.
I went to Baltimore again in
December for about two weeks, for a follow-up with Dr. Jallo. I had several
scans, and all my results were normal. I had yet another follow-up in the
summer of 2016 and again I was perfectly healthy. The cavernoma was completely
gone, I was recovering well, and I was no longer epileptic. However, once a
person develops a cavernoma, her/his body is always prone to develop more. Therefore,
I get MRI brain scans every now and then, as there is a chance my brain will
form another lesion later in my life.
Epilogue
I could not have been gladder I had
this experience, as it changed me drastically and allowed me to completely
conquer my worst and most dreaded fear in life. Because of this life-changing
event, I developed a deep sense of love and attachment to hospitals, to the
point where I sometimes feel jealous of people who visit the hospital for any
reason. Not only do I adore hospitals, but I have a weird obsession with them,
and I always find the littlest excuses to visit the hospital. Pills, blood
draws, IV injections, and vaccinations make me squeal in delight. MRI scans, CT
scans, X-rays and surgeries cause me to leap with joy. The strong aroma of
antiseptics fills me with excitement. Stepping inside a hospital gives me a
sense of thrill. I am now a new person who has a burning passion for medicine
and hospitals. I have enrolled into medical school, hoping to one day become a
successful doctor and work at a hospital, the place that once terrified me like
nothing else could.
Moving past my worst fear has encouraged
me to confront my other fears and overcome them. I have begun a journey of
fearlessness, conquering all my fears one by one. I used to be afraid of roller
coasters but now absolutely relish them. I used to fear deep water but now love
swimming. Spiders used to scare me but are now my dearest friends.
I strongly believe that God gave me
this experience to test me, to teach me valuable life lessons, and to help me beat
my fear of hospitals and death. It is my first real trial in life, and I am thankful
I went through it as it has shaped me into a stronger person. I wonder what
more surprises life has in store for me. Whatever my next trial is, I say to
it, “Give me all that you have got. I am ready.”