I am often described as being resilient.
I have been told I am a hero and inspiration.
I have been told I give many strength and courage.
I am the woman who had her first book Stolen Innocence published when I was a senior in high school.
My second book Living For Today in 2009.
I am the woman who was asked by my teacher in 2002 as a junior in high school when I couldn’t solve the algebra equation on the chalkboard if I planned on going to college. When I answered yes my teacher told me in front of all my peers I need to rethink my plans college is not in my future if I can’t do algebra. Twenty minutes later she had the same conversation with my mother saying she is not going to lie to me I will never get into college. A week later I was being told the same thing by my guidance counselor who said “college is not for everyone.” Two people who should have been encouraging me instead were crushing my self-esteem and dreams. I never returned to the algebra class and I went to the head of Student Services and got a new guidance counselor. 4 years after graduating high school I graduated with my BSW in 2008. I was accepted into an advance standing masters program and received my Masters a year later in 2009.
I am the woman who went after a law in my own state called “Erin’s Law”. Who testified at the Capital and had all members of the education committee vote yes and then had the entire Senate of Illinois (54 members present) vote yes to Erin’s Law on May 7th, 2010. It now waits to be heard by the House during veto session in a few weeks where it will be voted on and once passed will be sent to Governor of Illinois Pat Quinn for his signature.
It is because of the events in my life that have allowed me to accomplish all that I have in my life yet it has come with a lot of pain, confusion, anger, frustration, depression, darkness, betrayal, lose, and rage.
From ages 6-8 years old I was molested. Weeks shy of my 7th birthday I was raped. The whites of his eyes and his sick grin are crystal clear in my memory. All by an over powering grown man. From ages 11-13 I was molested by a cousin. Warned no one would believe me, this was our secret, and I had no proof. I can still see this cousin standing at his parents bedroom door after he had just molested me for hours warning me with these threats. These two men killed my innocence but I found it in my heart to let go of the anger, rage, and hatred towards them and forgive them. The two men that took so much from me and caused me so much pain never spent a day in jail for their actions. I can be angry about that but I choose to instead be a voice for the voiceless. My strength has always come from God.
If the pain of sexual abuse through 6 years of my childhood was not hard enough during an eye exam in 4th grade at school it was discovered I could not read the line. I went to an eye doctor and will never forget the doctor asking me to leave and explaining that he needed to talk to my Dad alone. I remember running through my head as I looked at all the different glasses on the walls was what I had seen in movies when doctors make kids leave and close the door that means bad news. Well what I had seen happen in the movies would end up becoming my reality. The next day my parents sat me down after school and explained the doctor saw a problem in my eyes and that if I didn’t get to a specialist I would end up going blind. I was taken to several specialists. A year later I was legally blind in one eye. Throughout the course of 13 and 14 years old I underwent 4 eye operations. One involved cutting open my eye lid and tightening the muscles due to lazy eye. The next involved placing tubes in both tear ducts of the eyes for several months. Doctors later went in and removed the tubes you could easily see if you looked at my eyes. The final surgery was laser surgery to correct the blindness in 7th grade.
By high school I had overcome my medical problems and was now dealing with the emotional trauma of flashbacks, nightmares, and panic attacks from the sexual abuse by my cousin. I slipped into a depression, self-injury for years, a suicide attempt at 16, and spent 8 days in a day hospital program. It was also during this time I confronted my cousin in a letter and found the strength to forgive him 7 months later when I was a senior in high school.
I published my first book and began flying the country speaking out on sexual abuse as I continued to heal. There was still a chapter of my life that was not yet haunting me but began to when I started college. The chapter I titled in my second book “Pinky Promise” I fell into an eating disorder as I describe in my 2nd book that began my freshmen year of college and lasted into my senior year of college. So much control and power was taken from me as a child starving myself gave me the control I lost as a child. I counted every calorie, measured all my food, survived on 300 calories a day and worked out daily for hours. I was trying to erase a chapter from my past and the face of a man that raped me.
I broke my silence to that chapter in September 2007. Little did I realize my life was about to be turned upside down a few months later in January 2008. While driving I had a grand mal seizure and hit the car in front of me. I did not come to until I was in the back in an ambulance and was saying it was Wednesday when it was a Saturday as I saw traffic passing by from the back of the ambulance in a busy intersection. For the next 4 months I would lose my independence could not drive myself anywhere and had to rely on everyone, undergo a hospital stay, 2 EEG (24 wires recording brain activity) MRI, Heart scans, and try numerous seizure drugs. One drug gave me pounding headaches, another drug made me so dizzy for a week I couldn’t walk. Finally we found a drug that worked but with any drug it comes with many side affects. The biggest concern was the side affect of anxiety. I did not feel the anxiety but I did feel the tiredness. I eventually got used to it. After being in so much darkness for 4 months I started to adjust to a life with a new medical condition. For 2 years from January 2008-February 2010 I had no problems and it was time for another EEG this time I was hooked up to 24 wires to my brain for 2 days in March and then I underwent an MRI in May. That is when my controlled seizure condition began to show problems.
My 48 hour EEG came back totally abnormal showing lots of spiking and firing activity in the left temporal area of my brain. The MRI showed even more shocking news. Doctors explained a portion of my left brain is “GONE” due to encephalitis as a baby and the area where memory, language, speech is developed is not there and my brain had to of rewired itself as a baby to the right side because otherwise I would not be able to speak or remember. While I did struggle with memory in school on exams, I unfortunately remember way too much details of horror I endured as a child. My doctor reported that I need to be in medical journals because of my remarkable story of a portion of my brain is missing and it is the area I am gifted in “speech”. There is scar tissue that developed due to encephalitis in the left temporal lobe of my brain that is causing the spiking and firing. In April I experienced my first aura since I had my first seizure over 2 years ago. The aura is a feeling I get right before I am going to have a seizure. I get very light headed and feel like the world is closing in and the weirdest feeling in my head. The first time this happened in April I went into the worst panic attack of my life. My heart and pulse racing, I turn white, and I can’t calm down. I need to hold onto someone and tell them not to leave my side. It is the absolute worst feeling. The panic attacks I had in high school were a breeze compared to this. My doctor increased my medication. It happened again in May and then twice in June. Panic attacks that can last up to an hour. So bad they have had me having to wake someone up. The only thing that would calm them down was hot baths. Each time I had one of these auras it sent me into a panic attack and each time my doctor increased my medication. For over 2 years I was on 500mgs a day and as I described in my 2nd book my doctor felt I would be going off them after 2 years. Little did we know 2 years ago what we know now and how much can change in the course of your life. My doctor put me on anxiety medication back in June to take whenever I feel a panic attack coming. At the end of September I had another aura and my doctor increased my medication to 2000mgs and warned me to call him if I was having any side effects because of the high dosage I was at.
I started to feel the increase in anxiety that came and went through the course of October, but being the person I am I did not want to call and complain to my doctor and decided to just put up with it. I also over the course of the past 3 months as my doctor has increased more of my medication losing weight. My friends and family started comment I was looking skinny or asking if I am eating. I thought it was strange so I started to weigh myself and noticed my weight dropping and also noticed I didn’t have the appetite I used to have. After a few bites I was suddenly feeling stuffed of anything I ate. Now if I was gaining weight I would be having a bigger problem and would be telling my doctor to take me off this drug but I figured I was still eating 3 meals a day so nothing to be too concerned about.
Now that leads up to a week ago Friday October 30th. I went to a Halloween party, came home at 1:30am, and went to sleep. My sister heard strange noises coming from my room a half hour later and jumped out of bed to see what was going on. She witnessed me having a seizure. My 2nd seizure in my life. She described me foaming at the corner of my mouth, head shaking, and eventually my eyes rolled behind my head which scared her and she ran and woke my parents. I woke up completely confused and immediately went into a full blown panic attack. Literally holding onto my mother and eventually being placed in the bathtub at 2:30am and giving me anxiety medication to calm me down.
Just like with my first seizure nearly 3 years ago every muscle in my body is sore a day after a seizure and just getting out of bed and walking down stairs was painful. My body is in a lot worse shape after a seizure then I felt the day after doing the Chicago marathon in 2003. Seizures physically and emotionally drain you. Not only is my body in physical pain but emotionally my mind is paralyzed with fear. The fear of another aura, panic attack, and seizure.
Then comes the conversation with my doctor who works out of Rush hospital. Increasing my medication again now to 2500mgs. 2000 more then what I was taking 6 months ago. I finally let him know I feel the side affects of anxiety, I shared with him the weight lose, and he explained that my body after two years may have learned to fight off the medication and it might be time for a new drug. He then went on to share once my body fails two drugs I am a candidate for brain surgery and all the risk factors that brings..including complete memory loss, speech problems, and the list goes on.
I cannot even allow myself to think that far ahead of the thought of brain surgery. I am just trying to deal right now with the day to day fear and anxiety that consumes me. The increase in having no energy is huge. There have been several days this week that I did not even get out of my pajamas. All my energy and motivation has been sucked out of me. The woman that has dedicated herself to getting a law passed to protect children did not even go out and vote this week. I did not have the motivation, energy, or care in the world. The last thing I was thinking about was politics. The only thing on my mind these days is fear over the unknown and just wanting to sleep. I am consumed with darkness and even told my sister tonight I think this seizure medication is making me depressed.
I feel like I have been missing for over a week. I went from a wonderful trip in Maryland where I gave a Keynote speech October 27th, to a Halloween party with friends October 29th and feel I have not been myself since then. I feel like I am drowning in darkness that I cannot snap myself out of. I even went as far to cancel my 4 hour drive to the state Capital this week for Erin’s law meeting and instead called into the meeting. That was more out of the safety of allowing my body to rest. I want the light switch to go back on. I want that drive, passion, motivation, and determination to flow through me. If I am not responding to your emails, fb messages, etc. please don’t take offense. And please don’t tell me you understand unless you suffer from seizures because you have no idea. I hate feeling helpless and that is exactly how I feel. I don’t have the words to say to myself to make things better or control to change this sitauation. The power and control has never been in my hands. Not as a child and not now as an adult. I’m very frustrated, exhausted, and don’t have the answers. I just want peace of mind.
I’m not even talking to God right now so that says a lot because I normally talk to him everyday, but I do appreciate those of you who are talking to him because he is not hearing from me. I don’t even have the energy to get angry with him the way that I want to. It’s too much work for this exhausted mind of mine.
In case you forgot I am human and we all face trials in life and I am dealing with one of the many trials I have already faced in my life. I am just reminding myself to take everyday one day at a time.