Imagine you are a mom, married to your best friend and love of your life. You finish up cleaning the kitchen after putting your child to bed. Soon you yourself crawls into bed next to your husband. You think about the reading you need to do with your daughter for school the next day and practicing riding her new bike. You peacefully fall asleep. BAM! you are startled awake with jolts of electricity coursing through you. You’re sweaty but have the chills and have trouble catching your breath. How did that happen so quickly? you look at the clock. you’ve been asleep for hours. You lay your head back down when Bam! you are jolted again and it is no mistake you are having short simple partial seizures. As you lay there thinking of what this will mean, another seizure hits, more intensly. you wait it out, clutching your blanket, and putting your face in your pillow so you wont scream out and wake up your daughter or husband. You go into “project solve as many problems as I can before this epilepsy takes me away” and you grab your phone. you know your husband has to get up soon for work. you text as many people in your support system you can think of telling them you are having seizures and could they help with your daughter. It is 3am. You know none of them will read it until later but by then you probably wont be able to use the phone any longer. you text ur husband that you are having seizures. you don’t want to wake him since he has to get up at 430am anyway for work. you have another seizure. holding your blanket around you, you stumble down the stairs and organize all your daughters meals and snacks for the next day as if in a buffet across the table. all things you can get herself. then you take your medicine, your rescue medicine. you settle on the couch and turn the tv on and things around you spin a little bit. your seizures continue….in clusters now very intense. you think of happy things. you put on happy comedies on demand. you start to sleep for awhile. you awaken again at 7am and your daughter is standing over you asking questions. sounds faraway. you tell her its a seizure day and point to the food. you look at your phone. one of your friends has responded and can watch your daughter that day. you tell her she is having a playdate to make it sound special and fun. your friend comes later on and picks her up. your husband will pick her up from your friends house. you fall back asleep. when you awaken again it is 1130. you are confused. is it am or pm? what day is it? it is dark out. you stumble upstairs and see your husband asleep in your bed and your daughter asleep in hers. you lay down next to your husband. he wakes up and asks how you are feeling. you say “what happened?” he says he picked up your daughter and your friends house at 4pm, came home and made dinner read with her and put her to bed. you slept through it all. you didn’t get to read or go bike riding with your daughter today. you see on your phone texting conversations that don’t make sense from earlier and phone calls you cant remember. you realize you haven’t eaten a thing all day. you don’t have an appetite either. the seizures are gone but in their place exhaustion remains. your muscles and bones and joints hurts from the constant shaking. you will probably need to rest again which is frustrating b/c you can’t wait to make up for the things you weren’t able to do that day.
I have quite a few ideas for November’s Epilepsy Awareness Month but I really wanted to kick it off with a good start. We had a great Halloween trick or treating with my daughter. After I put my happy little ladybug to bed, I dyed my hair purple for the next day, November 1st. I was supposed to read “Dotty the Dalmatian has Epilepsy” to my daughter’s kindergarten class the next afternoon. Molly was very excited to be my helper. When I woke up on Friday morning, I didn’t just wake up. I was “awakened” by jolts of partials seizures coursing through me. I couldn’t believe this was happening. I took my medicine and the seizures continued to get worse so I had to take more. I could feel it taking ahold of me. I knew before long I would be slurring or unable to speak at all. I grabbed my phone and dialed the elementary school. I left a message with the teacher and apologized before having to hang up. Molly came in and saw me seizing. She gave me a hug. Then she said, “You’re still coming to my school, right?” I said “I’m sorry baby, I wish I could but my seizures are too bad now and I’ve taken medicine.” Although I was shaking, I could see the disappointment on her face. I said “I will be there next week sweetie. Next week I will be there.” But I knew it didn’t mean much to her at the moment.
I wish there was a way to capture all of that in a picture, me having seizures Molly being disappointed because I was missing something I promised her. But I don’t have a way to do that. So I write about it afterwards and try to spread awareness as much as I can. Although I have accepted my life of epilepsy, I do want a cure so I would not ever have to see that look of disappointment on my daughter’s face again…there because of me and my seizures. My daughter takes after me though. My seizures and meds kept me pretty out of it for Friday and most of Saturday. When I came out of it on Saturday, Molly showed me all the “books” she had been writing and drawing. About 4 pages of Mommy having seizures, Mommy resting, hugging Mommy, Mommy feeling better. She draws and writes and then feels better:) She’s only 5 and a natural writer:) As I slept from seizures, I woke up to drawing of pictures of me with hearts and purple ribbons in the corners of the pages. I’m very proud of her.
So my first 2 days of November were not that great. I kicked off November Epilepsy Awareness Month by having seizures! And also sleeping for awhile but I am back now. My schedule is still off but I will get there. At least I still have my purple hair!
I am looking forward to making many ideas come true to raise epilepsy awareness this month and beyond!
Although it may seem obvious, seizures do not take vacations. They do not hassle you when it is convenient and take a time out for weddings, birthdays, or any planned appointment or event. I have experienced all of these and my family and friends and experienced my absences or changings plans last minute. I’ve gotten so used to it and I understand that others find it annoying. That is why I have tried to spread awareness about it as much as possible.
This past weekend was my mom’s birthday. My birthday was 2 days before and it was awesome. I was so happy. My whole life I have always celebrated my birthday sort of with my mom since we are 2 days apart and her mom, my grandmother shared her birthday so they really shared the day. It was a fun day for the 3 of us each year. My grandmother, my Nan, passed away this year and this is the first birthday without her. I know my mom would have a hard time since she had shared this day with her all of her life. I was excited to see my mom on her actual birthday. I called her at midnight on Friday and sang her happy birthday. We talked about having dinner at her house the next day. She was making crab cakes. Chuck, Molly and I got her a gift she hadn’t asked for but I knew she would like which is sometimes hard to do:) My brother would also be there and I had been texting with him earlier that day about times. We really wanted my mom to have a happy birthday. She said to me, “make sure you call early in the morning if you can’t make it.” I said, “mom, I feel awesome. There is like no way I am having seizures tomorrow! We will be there.”
Then I went to bed. At 7am that next morning it felt like electric shocks going through me and griped my right arm as I woke up, both hot and cold and confused. I got up, walked around and tried to “shake it off.” But you can’t shake off seizures. Another gripped me minutes later, for about a minute. Then I was still for a minute. Then I shook for a minute. My husband got me my medicine. I took one and it wasn’t enough. I took another. I tried calling my mom myself and dropped the phone. Chuck called her and had to cancel. I couldn’t believe it. I had spoken too soon. I continued to have seizures for the next two hours until the meds kicks in. As I seized on and off, Molly appeared in our doorway wanting breakfast. Then she saw me. She came over and hugged me until that seizure ended. I told her “it’s ok. I’m ok.” Molly knows what would come next. She ran out of the room and when I opened my eyes again she was giving me her precious Minnie Mouse doll to hold in my shaking hand. “thank you sweetie, that’s so nice. I love you.” I realized that seizures do not take time outs! They don’t care who is around or where you are or if you promised someone you would be somewhere. Seizures of all kinds can strike at any time.
Being that it is the beginning of October, that means it is one month away from November National Epilepsy Awareness Month! As much as my seizures are consistently inconsistent, I want to remain consistent raising awareness for epilepsy every month. Whether this is passing along resources, creating ideas, sharing my stories and those of others that is what I will continue to do.
As far as my mom’s birthday goes, my brother still went to see her and the next day my mom came up to our house and celebrated. It was a change of plans at the last minute but my mom is definitely used to it and we got to hang out for our birthdays:)
I was just a couple weeks shy of my 20th birthday when 9/11 happened. I don’t think any of us will ever forget what we were doing that day. I was running late to my first class of the day. When I woke up, my roommate was still asleep. I got my things together and sprinted across campus to get to class. The campus was mostly deserted; class had started and I was dreading walking in and apologizing to the professor that I was late. When I ran in the building, I saw a girl from my class come running down the hall crying. I thought that was odd but I kept going. When I got to class, no one was in their seat. Everyone was up and talking and no one noticed me slip in quietly. As I put my books down, I overheard my classmates talking about a plane crash. The professor asked all of us to take our seats and she explained what she knew at the time, when was very little. Then a second plane crash. We were told to return to our dorms and all classes were closed the rest of the day.
When I walked into my dorm room I was still bewildered and did not really understand what was happening. Then I saw my roommate Leah, up close to our 7 inch tv with a look of shock on her face. We sat together and watched in horror with the rest of the world as the towers came down. We cried and the events of that day became etched in my mind forever.
Immediately I wanted to help. As the coming days and weeks told more and more stories of moms and dads who would never come home and policemen and women and firefighters loosing family and friends, I knew I had to do something to contribute to all of these brave people who had saved lives. I talked to my dad about it and I don’t know how but he knew someone, and over Thanksgiving break we were able to go to Ground Zero.
There was a restaurant, and I don’t even remember the name of it but it was very close to the devastation. It shut down the actual restaurant for months and used it for feeding the firefighters and policemen when they were done with a 12 hour shift of digging through the wreckage. We took the most unpopular shift because that is what was needed. My dad and I got to NYC and started our shift 12midnight and lasted till 6am. As I walked into the restaurant, there were cards, letters, and drawings sent from children in schools all over the world. They were thanking the firefighters and policemen. The drawings took up almost every inch of space on the wall. It was amazing to see that kindness in person.
My dad was put to work getting the food out in the buffet area. The food was mainly eggs, bagels, and muffins. He also had to clean the floors. I was thinking I’d do something similar. Then the owner told me my job was to serve the coffee, keep coffee brewing because these guys need caffeine. And then he said; “And listen to them. They’re going through a lot.”
“Ok. Of course!” I said, nervously brewing my first pot of coffee. Then the first shift of firemen and policemen walked in. They looked pretty tired, but they talked together got food and all of them needed coffee. Most of them were not done for the night. This was a break and they were going back to work. I asked them how they were, and some of them talked a little bit. As it got closer to 4am, the policemen I will never forget walked in the door.
He sat in front of me and asked for coffee. I poured him some and asked how it was going. He rubbed his eyes a little and said it was rough. Somehow we got talking and he talked about what he lost that awful day. Or who. His 3 best friends all served with him on the police force. They were all killed that day. They all had wives, some had kids, one of them had a wife who was pregnant. He told me he works 12 to 14 hour shifts and didn’t feel like a cop anymore. He was just digging in the wreckage. He would be so exhausted at home he would just sleep and come back. He and his wife had planned a trip that fall but canceled it after what happened. He told me “you realize after awhile that things are bad when you start off the day hoping to find any remains of you best friends, just to be able to tell their families something.” I asked him if they had found anything from his friends. He said all they had found was one their guns.
I’ve thought about him since because to me he was and is a hero, as are all the policemen and women and firefighters who raced into the towers that day. Some of them lost their lives. Almost all of them lost a friend. And they kept coming back to clean up Ground Zero and try and give the families of lost loved ones some type of closure. It took a long time to go through the wreckage and I cannot imagine being that traumatized and having to go back to the spot I was traumatized everyday. I hope since then, maybe he found more remains of his friends. I hope their families are doing well. I hope he and his wife finally took the opportunity to take a trip like they had hoped. I never knew his name, but I hope he is living a good life. He is the Hero I met from 9/11 and I know he is out there. He inspired me that day and continues to do so. I admire him and all that were with him. They are all Heroes.
“Yes, it is probably just sinuses acting up. I can write you a script for when she has an episode.”
With these words from an egotistical male pediatrician, I knew we had come to the wrong place. My memory is when I was about 8 years old. I was swinging my legs on the “check up” table at the pediatrician’s office. I had recently suffered mild simple partial seizure clusters. These seizures effected my right arm and hand and my right eye. My mom didn’t really see the seizures because they had either happened in school or at home at night. But after hearing me describe this a few times, my mom took me to the pediatrician. I tried explaining to the doctor but he just looked at my mom. So my mom tried explaining it. The doctor just did not listen. I spoke up and said, “what does my arm have to do with my sinuses?” Ultimately we took this script and for almost 6 years I took a spoonful of this stuff every time I had seizures.
I’m writing this because when I hear stories about people “talking about living a lie but trying to force it to be true” I realize this is me to an extent. For 6 years I was misdiagnosed with bad sinuses instead of seizures. They were mild when I was 8 but each year got worse. When I was 10, the only illness I heard grown ups talk about was cancer. I had no idea what seizures were. So I thought I had a weird case of cancer that was killing me. And while I was wrong about having cancer, I was right that the longer it went without being treated, it was killing me. When I was 12, my seizures definitely got more intense as the stress at home increased as well. I had clusters of seizures in school and would cover my face with my hair and wear big sweatshirts and sit in the back of class. It was tricky; a few people noticed but not many. If the bell rang and I was having seizures, I would pretend to be reading a notebook intently until they passed and I could get up and walk down the hall. I would go home and my mom would ask how my day was and I would say fine. I would talk to my dad and not mention it. I wanted them to get back together and I did not want my seizures distracting them. A few weeks before I turned 14, all of these seizures without being treated for so long came to a blow. I had a massive grand mal/tonic clonic seizure and was taken to the hospital. In the next month after a lot of tests like CAT scans, MRI’s and EEG’s a neurologist sat down with my mom, my brother and I and diagnosed me with epilepsy.
So after this I was put on medication. My family knew and my close friends knew but we did not tell everyone. I was embarrassed, mortified that anyone would put a label on me making me different from any other kid. I had gotten so good at hiding the seizures from teachers, kids at school and family I was in no rush to tell anyone. I was 14 and just wanted to be like any other kid. I didn’t realize at the time that it was my uniqueness that made me special. My parents could be pushy with some things, but they really let me figure this one out on my own, what I wanted. My dad didn’t see me have seizures until high school, that is how good I was at hiding it. I definitely used my parents lack of communication to my advantage in that, I knew if my dad didn’t see something and I didn’t directly tell him, my mom never would. My mom herself didn’t really watch my seizures until my teen years when they were more intense then when I was 8. My dad did contact the EFEPA, the epilepsy foundation of eastern pa and signed up for their newsletter for kids with epilepsy and would give it to me each month. I would read it, and would read about how a teenager in another school was making a huge difference raising awareness with epilepsy and I couldn’t imagine ever being accepted or being ok in public with how different I was. But secretly, I admired those teens and I liked reading the newsletters whenever my dad would give them to me.
It took me a long time to “come out” as a person living with epilepsy and once I did, when I had seizures things didn’t seem so bad because it didn’t feel like it was just me anymore. My roommate and best friends in college definitely helped with that. I’ve never met a more accepting group of girls to something that none of them had ever encountered before. And they would just hold my hand when I would have a seizure. I also had not had that. I had held my own hands and my thumbnail and gone so deep in my non seizure hand back in high school I still have a scar there today. It was still slow going after that but I got so sick I sort of had to accept that part of myself. After that I volunteered with the EFEPA for the first time and it was awesome. I was a counselor at Camp Achieve, an over night camp for kids with epilepsy and I saw a lot of kids have seizures worse then mine and they were so brave! I was in awe really. Then I met my husband, he always told me “we’re in this together” about our health and “us.” When we had our daughter, I knew I wanted to raise her being ok in a world where her mom has epilepsy. So I definitely had to be ok with it and I was.
I am also writing this because 300,000 kids in the US have a type of epilepsy right now. Some it will be temporary, some it will be controlled, and for about 90,000 it won’t be either. At one time, I was 1 of those 90,000. I want parents to know the signs and symptoms of seizures. I had a lot of my seizures in my sleep and would wake up very disoriented before I was diagnosed. It started with slight eye blinking and my hand and arm jerking involuntarily, but it doesn’t always look obvious. I really did live a lie for so many years with only a few people knowing and even less that saw my seizure clusters for hours at a time. It feels so much better living my truth now. I was a child and teen with epilepsy. I am a woman with epilepsy. I am a mother and a wife and I have epilepsy. This definitely effects things in our life but it doesn’t become our life. Hiding something is always more stressful and always takes more energy then just being true.
If you are a parent wanting additional info, you can go to
So when someone with epilepsy goes any length of time without seizures, it is a truly big deal. There were a couple times in my life, mostly when I was much younger that I went about 4 months without any seizures at all. Those are always great times. However, just like everyone else, people with epilepsy deal with their own “stuff.” My new quote from Plato is: “Be kind. Everyone is fighting a battle we know nothing about.” That is really true and for myself, I have always felt like I had something else going on to deal with in addition to the seizures.
This past year I lost my grandmother, who also suffered from seizures at the end of her life. My grandmother and I had a very special bond and I have definitely missed her in the passed several months. I have wanted to tell her about things that are happening, or a funny thing my daughter said, or just to see if she saw the latest NCIS episode. But then I think about how in the end, she really wasn’t my Nan anymore and if she was still here, she would be suffering and I don’t want that.
In the past 2 years I have been more sick then I have been in other years. I have also recovered and healed and learned more about myself, my marriage and our family. We are strong. As I began to calm down and accept my illness and have peace, things started to settle down. Everyday I don’t have seizures is an awesome day. Everyday that I haven’t been dizzy since February is a blessing. I feel unstoppable. I want to help, I want to volunteer and I want to pass on the joy I am experiencing everyday now. I still have setbacks. And I always will. That is life. Sometimes you’re ahead. Sometimes you’re not. But I stay focused. I know what I want. I know yesterday my daughter and I went outside in our new backyard and played baseball. Then my husband came home and met us outside. We laughed and ran around and just had a great time. I had tons of energy and felt fantastic. That is a perfect afternoon for me.
My point in all this is that we need to celebrate the victories. Life can be hard and throws a lot of curve balls but when something we want happens, it should be celebrated. So any other people out there with epilepsy, if you are seizure free for 2 days and that hardly ever happens, celebrate it! Don’t waste time thinking about your next seizure because it will probably come soon enough. The setbacks of seizures is part of the journey that makes you who you are. They are apart of life. But still, celebrate yourself and your family because not having seizures and feeling great is such a cherished blessing.
Sometimes people tell me that they are praying for me to get “my miracle,” meaning a cure of epilepsy. I know many people family and friends have prayed for this over the years and I don’t wonder why at. There are peaks and valleys with every illness but at times it has seemed my valley was dirt dry. This was the case 7 months ago when I was in the hospital for the 3rd time in 6 months with uncontrollable simple partial seizures that refused to stop. I was on day 3 in the hospital when the injected dillantin into my IV 3 different times until I finally slept for about a day. My husband looked at me with worried eyes and I hung up a drawing from my baby girl on the wall of my room. It was of the 3 of us together in a house. I cried when I looked at it but it motivated me to get better and after 10 days I was discharged. Although I went seizure free for almost 21 days, my recovery was painful and long. My daughter wanted her Momma back, takin her to school and the movies. I could barely walk straight. I was on 7 medications for 2 months. Finally in April I was down to 4. I was able to go to Molly’s tee ball games and completely enjoy her with her pink glove, the only girl on the team trying as hard as she could. I was proud. My husband and I were able to get out of our apartment that I had to recover in and get into a beautiful home that we love. We joke, we play family games, our daughter reenacts movies for us and makes us laugh, we pray for others at dinner and play outside with our neighbors. It has been a long road and I truly appreciate all the prayers. Along the way though I met some others with epilepsy and they were certainly worse off than me. I want to find a cure more than anything for epilepsy, but if this is my cross to bear for life, I am ok with that. I have made my peace with it. Some days it is still hard. And it will always be scary at times. But after thinking about this and realizing my passion is to simply spread Epilepsy Awareness as much as possible. The other night at dinner, after grace, we all take turns praying for others in need in the world. My husband said “I am praying for all of those whose hearts are filled with hate, that they will leave room to be enlightened.” I looked across the table at him in awe. He could have prayed for so many things for himself: less stress, job security, healthcare security, etc etc. And I fell more in love with him in that moment. My daughter said to me recently when I asked her if she was scared of seizures she simply stated “No. Because my mommy has them and other people have them and I am not scared of them anymore.” My daughter amazes I cannot believe sometimes she is only 5. I always appreciate prayers. That being said, when I look at the 2 of them, I realize I have my miracle, I have a wonderful happy family. It isn’t always easy and a lifetime with seizures won’t be. But I hope the suffering I have been through I can somehow use it to help others become more aware and not scared, like my daughter.