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- Brain Aneurysm Survivor Model Search
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- 2015 Knuckle Ball – Phoenix
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Brain Aneurysm Survivor Model Search
After reviewing thousands of submissions and hearing the incredibly passionate stories, we are thrilled to announce the winners of the Brain Aneurysm Survivor Model Search. You certainly didn’t make it easy to choose as each story was more moving than the next.
Congratulations to these beautiful faces that will be representing survivors across America! Our goal is to put a face on brain aneurysms and AVMs and help remove the stigma associated with brain illness while encouraging survivors to share their experiences and help save lives. Each and every one of you is a winner and we thank you for sharing your stories. For questions, please email BASurvivormodelsearch@gmail.com.
In March of 2014, a blood vessel ruptured in my brain. I had been out of town, in Chicago, for work, alone in a hotel room. It was the middle of the night and I could not sleep. I had had the world’s worst headache for days and now this evening I suddenly I was unable to even move my neck. I knew something was terribly wrong but I wasn’t thinking clearly. Instead of asking for help from hotel personnel, I stumbled alone down to the hotel lobby around 1:00 in the morning and flagged a cab to take me to the nearest hospital emergency room. It was there I found out my problem was a brain aneurysm. With only hours to live, my life as I had known it up till then, would cease to exist. For the first time, I faced my mortality.
Immediately, I underwent twelve hours of emergency brain surgery after which I endured more than four months of painful and difficult physical rehabilitation, relearning like a baby, how to walk and talk. At the height of my rehabilitation, I was taking as many as twenty different prescription drugs. All of this happened just as I had begun a major job transition of my own into a completely new industry. And I was in the midst of writing this book, BRIDGES, with my co-author Marcey. All in all, it was it was the most harrowing year of my life.
My friends and associates all tried to help. They offered advice. “You should quit your job,” they said. “You should cut back on your schedule,” they suggested. Or they would quietly whisper, “You should just slow down and enjoy life.” But my brush with death was guiding me in a different direction. It was, for me, a wake-up call to do just the opposite, not to slow down and swaddle myself in fear, but to get up, get moving, and go for it. Doing the work, about which I am passionate, and living my dreams is, for me, enjoying life.
Before all this happened, I had spent the previous fifteen years of my professional life helping others move through their unexpected career and life events. My unexpected life event has added a deeply personal dimension to what has always been my passion. Just as I had taught others, I learned then to listen to my own inner voice guiding me through my personal and professional decisions. I can help you discover and listen to your inner voice to make your best decisions.
Nearly dying didn’t stop me from living, so surely fear of change would not stop me from pursuing my dreams. If I could survive emergency brain surgery, learn to walk and talk again, find a new job aligned with my passions in a totally different industry all in a ten-month timeframe, certainly you can conquer your own anxieties and gain confidence to pursue your passions.
It was a beautiful sunny morning on August 13, 2008. I had just hung up with my best friend when I felt like I was being stabbed in my right eye. My neck stiffened and then my back stiffened. I felt like I was swerving but I was in standstill traffic on Interstate 287 in New Jersey. I started to get scared because I didn’t know what was happening.
I was able to maneuver the car from the center lane onto the shoulder. The first call I made wasn’t to an ambulance, but to work. I told them that I thought something was wrong and that I wasn’t going to be at work. I started crying. I knew I couldn’t call my mother because she was in Virginia on a business trip and my husband was in NYC on a job interview. I called my sister, who luckily was at home. She put me on hold and called a family friend who is a police officer. He called an ambulance to come to meet me. It was surreal.
She stayed on the phone with me while I waited for everyone to arrive. The ambulance came and asked me a bunch of ridiculous questions – but the only one I remember was “have you been out of the country lately”? Really? I didn’t go with them because they were at a hospital far from my house. I had my sister drive me to the hospital that was 5 minutes from my home. I didn’t want to be far from my three kids who were 3, 8 and 11 at the time. They did a CAT scan on me and while my sister and I waited for the results, we were being silly, doing sisterly nonsense while we waited in the emergency room. This young doctor came and blurted “you have blood in the brain and will need brain surgery”. I thought he was joking. He said that a surgeon would come in to give me my options. I started crying again and my sister called my husband and my mother.
That hospital ended up sending me via an ambulance to another hospital 45 minutes from my house that had doctors who could put coils in my ruptured brain aneurysm. They couldn’t do a craniotomy on me because my aneurysm was on an artery of an artery in the back of my head where only 15% of people get it. They performed the surgery to insert the coils the next day and then I was in the Neuro-ICU unit for 2 weeks. I don’t remember a lot of it except a lot of sleep and poking and prodding. I went home on my wedding anniversary, August 28. I wasn’t even 40 yet. I survived though. 33% of people die when the aneurysm ruptures, during surgery, or during the two-week period when they “watch” you. I didn’t die. I can’t work anymore – I have headaches, memory issues, and exhaustion but I survived.
I found out that I have brain aneurysms in February, 2014, when one burst while I was driving to work. I remember having a headache the two days prior, but just working through it. Blondie was playing on the radio “One Way or Another.” My vision went funny, and it felt as though angel wings were flapping in my ears. Then pain and a tight feeling zipped from the base of my skull to the front. I could feel my pulse in my face and my neck and throat felt like they were swollen. The next thing I knew, I was parked in front of the convenience store that I stop at every morning before work, wondering how I got there. I kept thinking that I needed to get to work. I’m not sure why, but I instead drove to the emergency room. The emergency staff found the brain bleed. I felt certain they must be mistaken. They called the helicopter and ambulance. The ambulance arrived first and took me to Oklahoma City. I lay in the back of the ambulance thinking surely this wasn’t how it ends. I was unable to reach any family and didn’t want to leave a voicemail. I finally did reach them I suppose, because they showed up at the hospital. The aneurysms were too deep in the brain for a clipping. The doctor said coiling may not work due to the aneurysms having no necks to hold the coils in. The surgery appeared successful. Then I had a stroke. This caused me to have to learn to walk and talk properly again. Through physical therapy and VERY hard work, I am back to almost a normal life. There are other aneurysms still untreated in my brain, so every day I wake up I’m happy. Since the rupture, both of my children have become engaged, and my oldest is pregnant with my first grandchild. Their father died at 35, so I am the only parent they have. I have survived Goodpastures Syndrome, Krohn’s disease, facial reconstruction from a car accident, numerous other serious ailments and surgeries, but this one really knocked me down. Being a prisoner in my own body was the worst feeling. I know that I beat the odds, more than once and enjoy life so much more now. My survivor gift to myself was a photo shoot. I have attached two photos from that shoot. The photographer had her work cut out for her. I wwas covered in huge bruises from the blood thinners, and she edited those out for me.
I was born in Waltham, MA on May 3, 1990, but grew up the majority of my life in Needham, MA (a small town about 20 minutes outside of Boston). I grew up dancing and playing soccer on town teams, and continued with soccer in High School at Needham High. I was a very good student- only A’s and B’s, and I went on to college at Fairfield University in Fairfield, CT from September 2008-December 2011 as a nursing major. I had to take time off from school during my last semester due to a car crash that I was in. By the time I was recovered and ready to go back to school to finish my degree, I was told by the nursing school that they wanted me to re-take a number of my courses because of the amount of time that I had been out. Due to the distance and the cost of tuition I made the decision to transfer my credits to Salem State University in Salem, MA and changed my major to Pre-Med (Biology). In the time that I was out from school I started working at CVS Pharmacy in Needham as a pharmacy technician. I moved to Wakefield, MA in August 2014 and moved in with my boyfriend, Matt Powers, and his family. I did this because it is only a short 20 minute drive from their house to Salem, as opposed to the over an hour drive it would be from Needham.
I now work at the CVS Pharmacy in Wakefield as a pharmacy technician part-time and go to school full time, hoping to complete my degree by the Spring of 2016. In March, I made an appointment with my doctor (Irina Kogan) in Needham to discuss the migraine headaches that I have had throughout my life. When I spoke with her, she suggested that I get a follow-up MRI done due to the car accident that I was in in 2010. In the car crash I had a subdural hematoma, facial lacerations, and small facial fractures. Dr. Kogan was concerned that perhaps my brain wasn’t “healthy” due to the car accident and she wanted to make sure that everything was okay before prescribing me any new medication. Honestly, I was aggravated at first because I knew that getting an MRI was going to cost me a lot of money. I got the test done about a week later after my prior-authorization went through and the radiologists saw a “small” aneurysm and referred me to a neurologist in Boston, Dr. Thomas. I went and met with him and he told me that he wanted me to have an angiogram done, in order to visualize the aneurysm better.
After the angiogram (which I also have photos of) he said that because of my young age, he wanted to schedule surgery in order to take care of it. Due to the type, size, and location of it- Dr. Thomas and his partners believed that clipping the aneurysm was the best choice of surgery. I then had a functional MRI a week later, in order for the surgeons to see what that part of my brain controls- and they found that it controlled my speech and motor functions- so there was risk of complications in that field. I was scared beyond belief that we would do this surgery to take care of an aneurysm that may or may not eventually rupture during my lifetime, and in doing so there was potential to mess up my speech/motor skills.
I went into surgery on May 20 and made a very quick recovery. Dr. Thomas actually told us afterwards that the aneurysm was much larger than they thought and he was willing to bet that it would have ruptured sometime soon. This was horrifying but also somewhat comforting knowing that it was clipped and taken care of. The surgeons also somewhat comforting knowing that it was clipped and taken care of. The surgeons also told me post-op that they didn’t believe the aneurysm was related to my car accident, and thought that it had just formed on its own.
I found out a few days ago that my great-grandmother actually passed away from a brain aneurysm rupture in her late eighties- so perhaps I developed the aneurysm due to genetics. Maybe the car accident was actually what ended up saving my life. If I hadn’t been in the car accident, I highly doubt that my doctor would have had me get an MRI due to headache complaints. I would love to have this opportunity to help with raising awareness and lobbying for affordable scanning. If you have any other questions please let me know!
I am an opera singer. My musical adventures and physical maladies have become top breaking news and stories to many news reporters, television anchors, and magazine publishers. These articles and publications showed the world the most vulnerable and terrifying things I have ever dealt with. After seeing each piece or commercial become developed , I realized my life and what I have gone through was expressed in the words and thoughts of strangers. They could only imagine my journey, but never fully understand the depths of my experience. So I would like to tell you my life…well, part of it. This was the months before my 25th birthday and my last year of grad school. The time of my life where I just began to find myself, or so I thought. Here we go…
CHICAGO: WHERE TO LOOK IF YOU’VE LOST YOUR MIND
My last year of Graduate School. Soon it will be the first time I am on my own outside of academia and finding my way in the big Opera Music World. I have been nutured with amazing colleagues and my professors at Chicago College of Performing Arts at Roosevelt University, but after these nine months, like a Phoenix, I will be reborn to spread my wings and fly to my new journey. But for now, its rehearsal time. In November, we are performing for Opera fest, which is a festival CCPA produces all over Roosevelt University of short ensembles and opera compositions. I am apart of the production of Viardot’s salon opera “Cinderella” which I was chosen to sing and perform the role Cinderella (a dream come true!). We have just finished singing the first scene and now it is my ballroom entrance. Smiling, I wait for my music to begin. Silence. Dead Silence. Minutes must have passed by before I hear my name. As I awake, laying on the ground, trembling, I hear the whimpering of friends and an E.M.T looking to help me. With just the stare of my begging eyes for all to calm down so I didn’t panic, a hush came over the room while I was asked many questions by the paramedics. “Do you know where you are?” “What is your name?” Everyone was silent, hoping to hear an answer. NOTHING. I could think of the words but nothing came out. I was told had a grand mal seizure. I had turned blue and stopped breathing for minutes. I couldn’t remember my name or the name of others. It dawned on me that my life was about to change forever. I closed my eyes while the ambulance howls approached. Once I arrived at Northwestern Medicine, I am whirled around to get a CT Scan and MRI, then taken to wait for my mother to arrive and the results of my scans. Once my mother comes, a soft spoken, friendly faced neurosurgeon named Dr. Bernard Bendok enters the room with apologetic eyes. He explains that I have an AVM (arteriovenous malformation) which I was probably born with and is very rare. The seizure was caused by the AVM bleeding and if not taken out of my head will probably be the cause of a shorter life span. Good news, he said was that it was operable. Bad news, was that the AVM was pretty large and located in the right frontal and temporal lobe which is where speech, memory, language and music is processed in the brain. He expressed he was not sure how this would effect my every day speech or my passion of singing and if I would be possible to sing again.
So what do you do? Live, knowing you have a ticking time bomb in your head or have the surgery and come out a mute? I begged him with tears in my eyes, if he could try to save my singing, my music, my reason for living. Bendok, being a father himself, rested his hand over my head and said, “Okay, we will try” For the next 6 weeks, I was on anti-seizure medication and after school was at the hospital performing a unique procedure of Functional MRIs. This study was to see how my brain processed music, kinesthetic, language and memory. I would listen, visualize, and remember different arias or songs of opera in 5 different languages. They specifically mapped my brain and how I utilized every area of my brain for music and language. I was one of the FIRST opera singers to be studied on how our brain connects to not just music, but multiple languages and memorization. Dr. Bendok realized that as an opera singer, we not only process music in the mind on the right temporal and frontal lobe but we use all areas of the brain. “Like an orchestra”, he expressed. With that, he had his map, and was ready to plow and demolish the AVM. Christmas Eve 2012 was my 6 hour surgery and he was able to fully take out the AVM in completion. As I was rolled into my recovery room, I looked at my mother and said “Look mommy, I can still sing”, which I whispered the words to my favorite aria, “Song to the moon” from Rusalka. An opera loosely based on the fairy tale of The Little Mermaid . Since then, I graduated with my Masters Degree on time, and am a young professional opera singer having sung since the surgery, in NYC, Italy, Miami, Colorado and this summer in Virginia.
I can not lie and say music is just as easy to learn as before the bleed, but I work hard and slow. I take my time and find a practice that works for me. I am blessed for my neurosurgeon for not only saving my life, but also my spirit. My study has helped other physicians to see how music can be utilized in every part of the brain and I hope it can save other patients.
May 10, 2012 I had a headache so bad that it woke me up from my sleep. I was 33 years old. I have had migraines as long as I can remember so I took my usual advil and tried to rest. The medication didn’t even touch my headache and by 9:00 PM that evening I was vomiting and had lost use of my left hand and leg. My boyfriend at the time recognized that something was very wrong and dialed 911. The EMTs quickly assessed that I was in trouble and took me to the nearest hospital. A CT scan showed brain hemorrhaging. I was put on a medical helicopter bound for Rush Hospital University medical center. Rush physicians determined that I had an AVM with 5 aneurisms contained within the AVM. Doctors spent hours in surgery removing the AVM and preformed a craniotomy to help with brain swelling. I spent 3 days in a drug induced coma. I spent 3 weeks in physical, occupational and speech therapy in the hospital. Once home I would spend months rehabbing on an outpatient basis. I nor my family had ever heard of an AVM, and the only thing any of us knew about an aneurism is that if you get one, you die. No one should have to learn about these conditions in an ambulance. I got through this ordeal with the support of my family, doctors and nurses, and lots of self-determination. People would tell me how fortunate I was, and that I was a miracle. I felt as though I wasn’t special for having this happen to me. I was fully aware that many others had, or will have experienced this same fate. I was lucky enough to have someone around me at the time that immediately recognized the signs of a stroke and took quick action. I was also lucky enough to have unwavering support from friends and family. My mission then became to both educate, and help others. I began searching for others like myself and found The Joe Niekro Foundation Facebook page. I learned that there were support groups for people like me, and coincidently there was a support group just starting in MY city, at MY hospital. In that first meeting, for the first time, I met others who went through the exact same thing that I did. It was wonderful to discuss my experience with others who could truly identify. We shared the same fears, the same questions, even the same scars! We equally had the same gratitude for having the chance to come together. One month later, I was offered the opportunity to facilitate that same support group. For years I was walking around with a ticking time bomb in my head. When it exploded, it opened me up to the most fulfilling moments of my life. Words cannot express the amount of joy it brings me to consistently play a role in the education, recovery and wellbeing of so many courageous survivors.
I was raised by my parents in a two-story, pink-shingled house in an impoverished African American community called “Needmore” in a small town called Greer, South Carolina. I knew at a young age, that I wanted more for my life than what my neighborhood offered. After graduating from high school, I joined the Army. After four years of service, I move to West Point, New York, where I worked as a Physical Therapy Assistant in a Community Hospital. I quickly excelled through the ranks and after two years, I was conditionally promoted to Staff Sergeant. At that rank, soldiers are required to attend the Army’s Basic Non-Commissioned Officer Course (BNCOC). It is a school that provides leadership training for mid-career noncommissioned officers with 8 to 10 years of service. I was ahead of my peers and at age 24, I was at the pinnacle of my career in the military. Even though my professional life was in order, my personal life was in shambles. Shortly after the birth of my daughter, I started having battles with headaches that I could not control. I would experience two or three headaches a week, and then they progressed to two or three times a day. The headaches got so bad that it made it nearly impossible to take care of myself, yet alone a child. Instead of going to the doctor, I started taking over-the-counter medications to manage the pain. After a while, I started experiencing runny noses and a sore throat that accompanied the headache episodes. The headaches became progressively worse. My boyfriend (now husband) encouraged me to seek help. I went to the doctor and they diagnosed me with a sinus related headache (on several occasions). I was given Sinutab, nasal spray and Torridol as treatment. Based on my symptoms, I never thought that the treatment I was receiving was out of the ordinary. The nasal spray actually helped my headache. In preparation for BNCOC, I flew my daughter to South Carolina to stay with my parents. While I was there, I had another migraine episode. This one was more intense than any that I had previously experienced. I felt a piercing pain in my jaw and a sudden change in my eyesight. I was afraid, but I decided to sleep it off. The next day I returned to New York.
On April 16, 2001, I woke up and prepared for work as I normally did. It was an absolutely gorgeous spring day in Hudson Valley. I remember having a smile on face, as if I knew this day was going to be great! As I was walking into the hospital, the doors slid back. I took one step inside and the lights from those gleaming bulbs nearly blinded me. I felt this sharp pain in my head that infiltrated my left eye. I was seeing double. My ears started to ring. My nose started to run. My neck stiffened. I lost awareness of where I was and who was around me. I could not speak or yell for help. I dropped my bags and collapsed to the floor. I was immediately rushed to the emergency room. The Emergency room doctors performed every test they could to figure out why I had collapsed. All my vital signs were normal except for one specific thing. My left eyelid started to droop. At that moment, I told the doctor, “This is the worse headache in my life. She immediately ordered an MRI. The MRI results proved that I had a 4mm aneurysm of the left Ophthalmic Artery. The pressure of the aneurysm against my sinus cavity was making my nose run. Treating the sinus infection with nasal spray was subsequently helping to relieve the pain of the headaches. Not knowing the seriousness of this condition, I asked the doctors for a Torridol shot and sinus medication to help with the headache. The team of doctors and nurses turned and looked at me with a look of despair. I cannot fully remember what was said except “…if we do not get this fixed immediately, you will die.” My whole life flashed before me. Here I am, 25 years old and I am being told that I will die. My leaders were immediately informed and my ability to attend BNCOC was placed on hold. This could not be! I had dreams. I had goals to become an officer in the Army and this aneurysm was messing up my plans. I was so angry. I refused care and walked out of the emergency room. I went home, cried and called my mom. I went back to the hospital the next day. I completed a few more tests and was told I was being put on a Care Flight Helicopter to Washington, DC, for an emergency surgery on April 19th. I was so afraid of flying that I refused Care Flight and drove to DC by myself. I got in my car and I prayed, “Lord, you have been watching over me all this time. Please get me to DC safely.” I guess He was listening to me. My parents, aunt, uncle and my daughter met me at the hospital. I completed my Last Will and Testament and signed over my parental rights to my parents. My mother was more afraid than I was at the time. I told her I would be ok, even though I did not believe it myself. I kissed my child and held her one last time before waving goodbye. I woke up seven days later. My parents, the doctors and nurses were all standing over me smiling. One said, “Welcome back!” A few days passed before I was released to go home. The aneurysm was clipped. My hair was gone. My career was gone, but my family was there. My boyfriend was in college and could not be there, but he called everyday. I was so afraid that he would not want to be with me because of how I looked that I broke up with him. I never got to attend BNCOC. I was demoted to Sergeant because I was unable to complete the course. I eventually got out of the Army. I was so depressed. As I sat and reflected on all that happened, I remembered that if it wasn’t for my boyfriend, I would not be alive. One day he called me out of the blue and asked if he could come see me. I tried to dodge him because I knew I wasn’t the person he met. I knew I did not look the same or act the same for that matter, but he did not care. He told me he was going to marry me and I laughed. Well, six months later I married that wonderful man. Since our wedding in 2002, we’ve had two more children. I worked full-time while I attended college. I graduated with a Bachelor’s degree in Health & Human Services and earned a Master’s Degree in Information Systems. Recovery has been the hardest thing I have ever faced. It has been 14 years since the surgery and I still continue to struggle with migraines and depression. Some are as painful as the ones prior to the aneurysm repair, but not associated with all of the same symptoms. I have anxiety attacks, issues with my memory and trying to organize my thoughts is difficult at best. I need more rest than I use to. My stamina fluctuates. I have emotional episodes from extremely happy, to extremely angry. Although I may look good to most on the outside, the disability that I live with is more than anyone could ever imagine. Despite being told that I would have limited function after surgery, I did not quit. I fought back and I fought hard. With my husband encouraging and supporting me, I felt so empowered! I had a point to prove. I was not going to let this aneurysm beat me and I wanted to show the world that with faith and determination you can prevail when the odds are stacked against you.
Congratulations and thank you for your courage, perseverance, strength, hope and strong-will. Never stop fighting and believe in yourself!!!
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