Giving Thanks: Tristin's Story About Living With Epilepsy
Another Day Along the Way
Wednesday, November 25, 2009
Another day,
November is known as a month of giving thanks, but it also serves as Epilepsy Awareness Month. For many who live with the condition, it is a time to reflect on their personal journey with epilepsy and be thankful for the obstacles they have overcome. I've included stories and facts on Facebook, and a link to the Epilepsy Advocate radio show I'm hosting, Epilepsy Perspectives, to help you understand more about the diversity of epilepsy.
Today, read the story of my friend Tristin Seagraves. Let her story remind you about what so many people experience. Let us learn. And let us give thanks!
I was diagnosed with epilepsy when I was 9 years old, the summer of 1993, because I had a tonic clonic seizure. But I remember having auras before then. I've had many different kinds of seizures (partial, complex partial, tonic clonic, atonic), but the majority of my seizures (885%) are partial and complex partial.
Before my recent surgery, I would have a cluster of seizures once a month; a seizure about every two hours for 2 to 5 days. They start with an aura or warning (partial seizure). During an aura I suddenly become really aware of my surroundings. It's as if everything becomes crystal clear, but in a scary way. I get a strange, nauseating, gut feeling-a rising epigastric sensation. It's like a pressure in my gut that rises up to my chest and throat. If I talk during an aura, I only say a few words, like "I feel funny."
The feeling is too intense for me to say anything else. It feels like talking will make the rising feeling worse. It's easier to talk or notify someone of the situation at the very beginning of the aura. I never remember anything after the aura (partial seizure). When the seizure goes from a partial into a complex partial, I blank out and become nonresponsive. I make strange mumbling/moaning noises, and hand movements (sometimes just my right hand, sometimes both). Pinching and/or scratching myself. Walking around during a class I started making strange moaning noises. Then I got up and walked out the back door of the classroom (a door that was never used, one that I didn't even know was there). I walked around the building and back into the main lobby. People have told me that I make strange faces during a seizure and that I make repetitive hand movements (for example, sitting on the floor trying to recline the computer chair). Sometimes I perform strange and unusual tasks, like trying to jump out of a car at an intersection. Yet, I don't remember doing any of these things. I only know what I do during a seizure by what others tell me and by watching videos of me having seizures.
After the seizure cluster, post-ictal symptoms come, such as memory loss (mostly names and past events), decreased appetite, and confusion. When reminded of past events, what happened yesterday would feel like it happened last week. I'm usually untalkative and a bit depressed. It's funny, but I also get poetic. My poems can be a little depressing, but that's my way of venting my feelings.
Many people have been by my side throughout the years. Up until a couple months ago, my family was my transportation. It's sad, but I'll be 26 years old this month, and I just got my driver's license. Coworkers have helped me. And I've had friends at work who were nice enough to drive me home. It's hard, and really embarrassing to ask for that kind of help. I always felt like I was a burden on my family and friends. My friends in my epilepsy support email group have also been a big helping encouraging me.
The surgery was all my idea. I was sick of juggling anti-epileptic drugs (AEDs) and knew that there had to be another way. I've read that once you've tried many different AEDs and you're still having seizures, chances are that the AEDs aren't going to control your seizures. I did a lot of research on surgery for seizures and mentioned it to my neurologist. Yet just mentioning it didn't help much, so I asked him to refer me to a neurosurgeon. He kind of chuckled (thinking that I wasn't a candidate) and gave me a referral to the Medical College of Georgia in Augusta. That piece of paper changed my life. (I can give more information about the doctor and procedure for those who are interested. You can contact me through Pastor Chris.)
The neurosurgeon put me through a lot of candidate testing before surgery... six months worth of MRIs, Video EEGs, a neuropsychological exam, a WADA angiogram (the strangest test ever), a PET scan, etc. The tests showed that I had left temporal sclerosis, scar tissue and cellular damage in my left temporal lobe (TL) and a small amount of cellular damage to my right temporal lobe. Video EEGs showed that 85 percent of my seizures were coming from the left TL and 15 percent were from the right TL. The seizures from the right were tonic clonic. The seizures from the left were partial and complex partial. Because seizures were coming from both sides, they said my case was "complex" and we had to do extra testing. The WADA angiogram showed that I have right brain dominance, which means my speech, language, and memory is controlled by the right side of my brain, not the left like most people. The doctor thinks that I was originally left brain dominant, but due to scar tissue build up, my speech, language, and memory transferred itself to the right.
On October 28, 2008, I went to Augusta for a Depth Electrode test. I didn't plan to be in the hospital for 3 weeks, and I didn't know I would leave Augusta without part of my brain.
After the Depth Electrode test, a Grid Electrode test, and brain mapping, my doctor asked me if I wanted to go ahead and do the surgery. He said he could stop 85 percent of my seizures by removing my left temporal lobe. It was a bit of a shock, but I was all for it.... no fear!
The surgery was in November 2008 and I was in a lot of pain afterward, but it was worth it. I'm not having seizures anymore.
Before the surgery, it was really difficult to speak. Words just wouldn't come to my mouth. I really had to think about what I wanted to say or else it would come out a jumbled mess or wouldn't come out at all. Word recall was terrible. But since the surgery, my word recall, speech, and memory have improved greatly. And I'm driving now, which is a true dream come true. God does answer prayers.
My friends and family supported me and gave me encouragement. I guess my dreams and hope for my future gave me encouragement, too. It was my vision of becoming seizure-free and my belief that God had something better planned for me that got me through it all.
One of my favorite quotes is by Eleanor Roosevelt: "The future belongs to those who believe in the beauty of their dreams." No matter the circumstances, hopes and dreams should never be tossed to the side. Dreams do come true. So my advice to others is to never give up hope. Do some research. Look at all possible options for medication and surgery. Remember, nothing is impossible for God. Always believe. Have faith, and hope for the very best. You may be surprised.
As we think about Tristin's story, what can we learn? How have life's unexpected disappointments influenced our health, our relationships, our jobs, our present, our future? What can we do to learn how to truly believe? What dreams do we hope will come true?
Along the way,
Chris Maxwell
Personal Statement: I can remember a night alone, when a nurse turned out the lights in my room. Awake in darkness, questions crammed my anxious mind.(Chris Maxwell, Changing My Mind: A Journey of Disability and Joy, LifeSprings Resources, 2005)
Wednesday, November 25, 2009
Another day,
November is known as a month of giving thanks, but it also serves as Epilepsy Awareness Month. For many who live with the condition, it is a time to reflect on their personal journey with epilepsy and be thankful for the obstacles they have overcome. I've included stories and facts on Facebook, and a link to the Epilepsy Advocate radio show I'm hosting, Epilepsy Perspectives, to help you understand more about the diversity of epilepsy.
Today, read the story of my friend Tristin Seagraves. Let her story remind you about what so many people experience. Let us learn. And let us give thanks!
I was diagnosed with epilepsy when I was 9 years old, the summer of 1993, because I had a tonic clonic seizure. But I remember having auras before then. I've had many different kinds of seizures (partial, complex partial, tonic clonic, atonic), but the majority of my seizures (885%) are partial and complex partial.
Before my recent surgery, I would have a cluster of seizures once a month; a seizure about every two hours for 2 to 5 days. They start with an aura or warning (partial seizure). During an aura I suddenly become really aware of my surroundings. It's as if everything becomes crystal clear, but in a scary way. I get a strange, nauseating, gut feeling-a rising epigastric sensation. It's like a pressure in my gut that rises up to my chest and throat. If I talk during an aura, I only say a few words, like "I feel funny."
The feeling is too intense for me to say anything else. It feels like talking will make the rising feeling worse. It's easier to talk or notify someone of the situation at the very beginning of the aura. I never remember anything after the aura (partial seizure). When the seizure goes from a partial into a complex partial, I blank out and become nonresponsive. I make strange mumbling/moaning noises, and hand movements (sometimes just my right hand, sometimes both). Pinching and/or scratching myself. Walking around during a class I started making strange moaning noises. Then I got up and walked out the back door of the classroom (a door that was never used, one that I didn't even know was there). I walked around the building and back into the main lobby. People have told me that I make strange faces during a seizure and that I make repetitive hand movements (for example, sitting on the floor trying to recline the computer chair). Sometimes I perform strange and unusual tasks, like trying to jump out of a car at an intersection. Yet, I don't remember doing any of these things. I only know what I do during a seizure by what others tell me and by watching videos of me having seizures.
After the seizure cluster, post-ictal symptoms come, such as memory loss (mostly names and past events), decreased appetite, and confusion. When reminded of past events, what happened yesterday would feel like it happened last week. I'm usually untalkative and a bit depressed. It's funny, but I also get poetic. My poems can be a little depressing, but that's my way of venting my feelings.
Many people have been by my side throughout the years. Up until a couple months ago, my family was my transportation. It's sad, but I'll be 26 years old this month, and I just got my driver's license. Coworkers have helped me. And I've had friends at work who were nice enough to drive me home. It's hard, and really embarrassing to ask for that kind of help. I always felt like I was a burden on my family and friends. My friends in my epilepsy support email group have also been a big helping encouraging me.
The surgery was all my idea. I was sick of juggling anti-epileptic drugs (AEDs) and knew that there had to be another way. I've read that once you've tried many different AEDs and you're still having seizures, chances are that the AEDs aren't going to control your seizures. I did a lot of research on surgery for seizures and mentioned it to my neurologist. Yet just mentioning it didn't help much, so I asked him to refer me to a neurosurgeon. He kind of chuckled (thinking that I wasn't a candidate) and gave me a referral to the Medical College of Georgia in Augusta. That piece of paper changed my life. (I can give more information about the doctor and procedure for those who are interested. You can contact me through Pastor Chris.)
The neurosurgeon put me through a lot of candidate testing before surgery... six months worth of MRIs, Video EEGs, a neuropsychological exam, a WADA angiogram (the strangest test ever), a PET scan, etc. The tests showed that I had left temporal sclerosis, scar tissue and cellular damage in my left temporal lobe (TL) and a small amount of cellular damage to my right temporal lobe. Video EEGs showed that 85 percent of my seizures were coming from the left TL and 15 percent were from the right TL. The seizures from the right were tonic clonic. The seizures from the left were partial and complex partial. Because seizures were coming from both sides, they said my case was "complex" and we had to do extra testing. The WADA angiogram showed that I have right brain dominance, which means my speech, language, and memory is controlled by the right side of my brain, not the left like most people. The doctor thinks that I was originally left brain dominant, but due to scar tissue build up, my speech, language, and memory transferred itself to the right.
On October 28, 2008, I went to Augusta for a Depth Electrode test. I didn't plan to be in the hospital for 3 weeks, and I didn't know I would leave Augusta without part of my brain.
After the Depth Electrode test, a Grid Electrode test, and brain mapping, my doctor asked me if I wanted to go ahead and do the surgery. He said he could stop 85 percent of my seizures by removing my left temporal lobe. It was a bit of a shock, but I was all for it.... no fear!
The surgery was in November 2008 and I was in a lot of pain afterward, but it was worth it. I'm not having seizures anymore.
Before the surgery, it was really difficult to speak. Words just wouldn't come to my mouth. I really had to think about what I wanted to say or else it would come out a jumbled mess or wouldn't come out at all. Word recall was terrible. But since the surgery, my word recall, speech, and memory have improved greatly. And I'm driving now, which is a true dream come true. God does answer prayers.
My friends and family supported me and gave me encouragement. I guess my dreams and hope for my future gave me encouragement, too. It was my vision of becoming seizure-free and my belief that God had something better planned for me that got me through it all.
One of my favorite quotes is by Eleanor Roosevelt: "The future belongs to those who believe in the beauty of their dreams." No matter the circumstances, hopes and dreams should never be tossed to the side. Dreams do come true. So my advice to others is to never give up hope. Do some research. Look at all possible options for medication and surgery. Remember, nothing is impossible for God. Always believe. Have faith, and hope for the very best. You may be surprised.
As we think about Tristin's story, what can we learn? How have life's unexpected disappointments influenced our health, our relationships, our jobs, our present, our future? What can we do to learn how to truly believe? What dreams do we hope will come true?
Along the way,
Chris Maxwell
Personal Statement: I can remember a night alone, when a nurse turned out the lights in my room. Awake in darkness, questions crammed my anxious mind.(Chris Maxwell, Changing My Mind: A Journey of Disability and Joy, LifeSprings Resources, 2005)
