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