Keynote address at Epilepsy Awareness Day, held by the Epilepsy Foundation of Virginia, Central Virginia Chapter
Saturday, November 14, 2009-- Hello, my name is Linnea. Thank you for inviting me to speak today. On behalf of CURE, Citizens United for Research in Epilepsy, I want to extend our gratitude for enabling us to share our stories, our knowledge, and our mission. Today, I will also be sharing my personal story of living with epilepsy, how I became involved with CURE and information about the organization.
I hope that by sharing my story today you can take away some ideas and lessons from what I have learned while living with epilepsy the past ten years.
I was diagnosed with epilepsy in 1999, halfway through my sophomore year of college. I was studying for final exams and writing papers to wrap up the semester. During this time, I had only a few hours of sleep over a three-day period. I finally decided to lie down for a nap.
I woke up having a seizure. One of my roommates saw it. She was in the room, studying. After I awoke, I asked her if she saw me moving in bed. She said she did but we weren’t sure what happened. It was my first seizure. We decided to call my parents who urged us to go to the E.R.. After a brief exam, they sent me home. Still tired, I went back to sleep and again, awoke with some jerking movements. Again, this roommate saw what happened when I was in bed. I returned to the E.R..
Upon hearing what happened, my mom and dad were on the first flight they could get from Virginia to Ohio. I don’t recall the time period between the phone call and my parents walking into my hospital room.
After my discharge from the hospital, I returned home and went to a neurologist. I was started on an anti-seizure medication. An EEG was conducted along with an MRI. That data, along with a description of my experience led to the conclusion that I had epilepsy. More specifically, my diagnosis is simple partial seizures with secondary generalized seizures. The history of most of my seizures are nocturnal, occurring around my sleep cycle.
After final exams were completed and winter break was over, I returned to school. I remember talking with a friend who asked me how I felt about having epilepsy. I had no idea. I remember feeling clueless
I had never heard of epilepsy. I didn’t know what to think. I knew I didn’t like what was going on. I didn’t like the seizures, the hospital, the visits to the doctor, and the diagnosis of something permanent in my life that I had never heard of before. Little did I know what traveling this road with this diagnosis would be like.
I tried eight to ten medications over the next six years, none of which fully controlled my seizures. I obtained partial control but that required a cocktail of two to four medications and up to 20 pills a day. As I moved several times, I consulted with several epilepsy centers.
In 2006, I was evaluated for surgery. It took one year. Up until then and through this time, I had an alphabet soup of tests, requiring two hospital stays and many hospital visits. I have had CAT scans, PET scans, MRIs, fMRIs, Spect scan, EEGs, VEEGs, Ambulatory EEG, MEG, Neuro-psych testing, among others. It was finally determined that I was a candidate for surgery. I was relieved. There was no question in my mind that I wanted to have surgery. I had been on all of the medication options for my type of epilepsy and although I knew other medications were coming down the line, I was losing hope in the success medications would bring in ridding me of seizures and side effects.
Surgery was another source of hope. I talked to many people who had the type of surgery I would be having. My parents and I had done research about surgery and got second opinions and we felt like we had asked as many questions as we could think of. We researched and talked to different epilepsy centers, doctors, and surgeons, including the mortality rates for this surgery. Though I knew every surgery comes with risks, it also comes with hope.
In 2007, I scheduled a two-stage surgery. The first surgery was seven to eight hours, during which part of my skull was removed and over two hundred electrodes were implanted in my brain in the area that my tests indicated my seizures were coming from. During the week between surgeries I had a VEEG (a video EEG) and was tapered off my medications and sleep deprived to induce seizures. I had over 30 simple partial seizures to give them the information necessary for the second surgery that would also take seven to eight hours. The second surgery included waking me up to further evaluate what tissue could be safely removed, removal of the electrodes, and removal of the epileptic tissue and replacing the piece of skull.
After recovering in the hospital, I experienced 17 beautiful days of seizure freedom. On the 18th day, there was discoloration at the incision site followed by seizures, sickness, tests at my local hospital, and a phone consultation with my surgeon. It was determined that I needed to return to him immediately. My infected skull piece was removed in a four-hour surgery, the infected site was cleaned and my skin was stitched and stapled back together.
I was part of the 3% infection rate from epilepsy surgery at this particular hospital. I got the infection in the hospital. After it was determined what kind of infection it was, I returned home with a pic line through which I proceeded to give myself antibiotics three times a day for six weeks. I lived without a skull piece for seven months to ensure my body had rid itself from infection. At the end of the seventh month, now into 2008, I had a cranioplasty—surgery to implant a prostethic skull piece.
Currently, I continue to have simple partial seizures several mornings a week and I’m still on the same cocktail of medicines as pre-surgery. Though I’m not a poster child for a successful surgery, I still believe that surgery is a desirable and effective treatment for some individuals.
And what about the side effects of medicines? Eyes blurring while trying to have a conversation or walk. Losing my train of thought while trying to communicate with someone. Slurring while trying to have a conversation. Anxiety, panic attacks, rashes, depression, ovarian cysts, dizziness, aches, nausea, drugged, dopey, weight gain, weight loss, drowsy. So very tired. Memory. Short term memory- not being able to remember the topic I am discussing with someone or a lesson I have just been taught, or if I have already said, just minutes before, what I am going to say. Long term memory—not being able to recall my epilepsy history, or not having the foggiest memory of stories that my friends tell me I was a part of, not remembering the feeling of living life without epilepsy.
Life with epilepsy has emotional, social, and physical implications.
I remember wondering right after my diagnosis and over these years: How should I feel? Should I be a Lance Armstrong—a person staying positive while living with a terrible illness? I heard little about him feeling “negative.” Years later, many people were wearing yellow bracelets that read, “Live strong.” They were constant reminders of a spirit that I could choose to embrace, but somehow it didn’t fit for me. I felt like it was too simple; placing a band-aid and covering up the many emotions I was experiencing.
At times, I felt sad, anxious, or confused. Research has found that depression and anxiety are not only from the challenges of living with epilepsy but can also be part of the epilepsy syndrome. But these kind of feelings seemed to get little public expression from someone living with an illness. After all, was I sad? Was I suppose to be sad? Was this diagnosis of epilepsy no big deal? Would it be possible to simply live well with epilepsy? Where was my emotional instruction book?
Almost ten years later, I have come to the conclusion that a variety of emotions are natural and okay. Sometimes I will feel stronger than other times and I will work with these difficult emotions.
I am usually scared going from my partial seizure, where I am conscious, into my generalized seizures. I am usually anxious during VEEGs. I am usually anxious and scared when my medicine has been tapered off and I am sleep deprived in order to induce seizures. I am often scared when I’m changing medications or the dosage.
There is sometimes stress and anxiety of what’s around the corner when I lay my head down on my pillow—what the night or morning will bring. There is the stress and anxiety about whether to socialize on a particular night and how long I should spend socializing. There is the stress and anxiety about having a new test preformed. There is the stress and anxiety about being stressed and anxious. There are the nights crying over stress, anxiety, angers, fears, and frustrations.
I have experienced losses and sadness along the way. I had to quit playing field hockey in college, a game I loved. I had academic challenges resulting in a drop of my grade point average. Traveling is also something I have had to readjust; I have to take into consideration time zone changes and if there are doctors and hospitals in the area that could help me should I need attention for my epilepsy. Losing the freedom to drive for periods of times. Losing the freedom to live on my own for periods of time. I have lived with friends halfway across the country and lived on my own and I have also had to return home to live with my parents because of increased seizures, troubles with medications, and pre- and post-surgery assistance and safety.
There is still a stigma attached to this illness. When it comes time for a job interview, you have the right to disclose that you have epilepsy or choose not to. I have done both. If I did not tell my employer, I do so soon after my employment for my safety, making sure that person and my co-workers know what to do should I have a seizure. Then again, I might bring up that I have epilepsy during an interview for the purpose of clarifying expectations—extra doctor visits, calling in “sick” on occasion, or adjusting my hours to ensure my best performance on the job.
My life is not what I expected it to be at this age. I often compare myself to my friends who are leading the lives I thought I would be leading at my age. For people to simply know that I have epilepsy and how it changes lives would lift much of the burden and shame I feel. Living with epilepsy is not just a daily burden, but in fact an all- encompassing reality.
What pains me is not remembering my life without seizures and without medication side effects. It’s hard to remember the simplicity of life before epilepsy. So, writing this speech has taken me down memory lane. For once, putting my history and feelings down on paper. I have had many medical reports written up about me, as I have changed doctors many times. The reports usually begins, “Linnea is a right handed ____ (insert age) female…” Years before, I didn’t have these kinds of records.
I had a different experience with meeting my brain surgeon for the first time. He brought my latest medical report into the room. Immediately after brief introductions and handshakes, which beforehand, I had requested my parents to do gently (after all, my head might be in his hands down the road) we sat down, he held up the report, pointed at it, looked at me and said, “This is not you.” I believe my first thought was, “Really?” Yeah, I was sick and tired of reading that I was right handed, the medications I had been on, what tests I have had and so on… but all of it had all created a different life for me.
That was the first time someone had told me this, especially a medical professional. Paraphrasing, he went on to say, “You are your own person. You are not what is written down on these papers.” I was very interested in what he had to say. He was very honest, saying, “I don’t know.” when he didn’t know the answer to a question and also saying, “We don’t know.” when explaining that some of the research has not been done to answer the question being asked. It was a relief to have a medical professional be so honest and acknowledge the lack of research in the field of epilepsy.
I understand and know first-hand how epilepsy can affect family, friends, and relationships. I see how time consuming it is for everyone; including setting up doctor visits, phone calls, emails, billings, medical form submissions, obtaining medications, etc.. I see how financially challenging it is with insurance, medications (whether on a patient assistant program or not), hospital stays, test, surgeries, transportation—car, plane or train.
It can be emotionally draining as well. Less so now than before, my family and I would often talk about our experiences with epilepsy. Though we are very open as a family, I don’t really know what it feels like to be in their shoes. I am, at times, concerned for them. I want to make sure they are cared for as well.
I have friends who check in on my epilepsy. Asking how I’m feeling, what came of a doctor’s appointment, or how my seizures and side effects have been. I deeply appreciate their interest. Then there are other friends that have told me that they didn’t know if I would want to talk about my epilepsy so they don’t want to bring it up or ask about epilepsy in general. Once I explain that I would rather talk than not, they often have many questions that they seem to feel comfortable asking. I take this as an opportunity to educate a person about epilepsy and the effects it can have on a person’s life. And as one of my friends told me, “There is comfort in knowledge.” It’s true for me and true for my friend.
Despite the difficulties and challenges, I have been incredibly blessed to have received treatment and support from numerous doctors and healthcare givers, cherished and needed conversations with family, friends, community, and strangers. I am very thankful to people who have touched my life with their concern, care, and curiosity. They have brought so many smiles to my face, relief to my thoughts, comfort to my heart, encouragement to my spirit and support for my efforts to ease the pain of others living with epilepsy. One of the most important supports has been my connection to CURE
Our family learned about CURE in 2000, when my mother and father went to an NIH conference on curing epilepsy co-sponsored by CURE where they met Susan Axelrod, President of CURE. After I graduated college, I moved to Chicago where CURE is based. My parents expressed some concern about me living in Chicago. My father called Susan who listened well, was very caring, and made sure that they had her information so they or I could be in touch with her if need be. That time came around when I started having generalized seizures and difficulties with my medications. I turned to Susan and found myself in comforting and helpful hands. She provided me with guidance and support the time I needed it the most. Susan has comforted many individuals and families faced with epilepsy. Susan and CURE feel like an extended family to me. The CURE family is a true advocate for those living with epilepsy. They are a home where I find hope and a place where I can take action and spread the word of their mission, which has now become mine as well.
I hear stories that sound so familiar and yet are also so different from mine. Tragically, so many people have died from epilepsy and so many live with severe hardships and limitations. I believe it is important that we have compassion for the suffering of others while also knowing and telling our own stories—these truths of our lives. I think there is a common thread within the epilepsy community—we must stop seizures and side effects.
What I really want is a cure for epilepsy. For all the people and their families and friends who travel this road through life with epilepsy, I want the road to change direction. I believe it can change through educating people on the facts and truths of epilepsy, and financial support to fund the much-needed research to find a cure. I don’t believe things happen for a reason. I do believe that things don’t happen for a reason. I believe that we do not have a cure for epilepsy because the general public does not know enough about epilepsy, epilepsy does not get the attention it needs and therefore does not get the funding needed for research grants. Citizens United for Research in Epilepsy gives me hope. If not in my lifetime, then in the future—I hope we have a cure for epilepsy.