A Life-Changing Experience: How I Overcame My Worst Fear

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.”