This story was found on youtube.com on Penn Medicine’s youtube channel. Warriors With A Pen is not the creator of this story but found this story to be inspiring and worthy of sharing.
Bert’s journey began like so many of ours. He struggled with his seizures and they affected his life in a very negative way. On his really bad days when he had seizures for much of the day he would wake up later and forget where he was or forget what had happened the day before.
In school, he would do really well during a semester then have a bad night of seizures and forget everything he learned. It was frustrating and difficult for him and it still upsets him to think about it. He felt like less than a man because he knew what he was capable of, but his seizures were robbing him of his ability to do them.
For years Bert tried to control his seizures with medication but the medications became less and less effective. His doctor told him he needed to consider having brain surgery, but Bert had a deep fear of brain surgery. There was something about having someone operate on his brain that just scared him. So he found a doctor that was able to soothe his fears and took the time to listen to him.
Bert underwent testing to find out where his seizures were coming from and after they located the source of his seizures and decided it was a safe place to operate Bert faced his fear and underwent surgery.
After surgery Bert says he just wanted to get out of bed. He felt good for the first time in a long time and after he tested his limbs to make sure everything was still good he was thrilled to discover his brain was working!
After some months of recovering and being cared for by his doctors and the hospital, Bert felt like he had a new lease on life. He felt like a door to a horrible negative life had closed and the door to a new wonderful life had opened. He is now able to work, drive, and live a full life. If he had not undergone this treatment he would still be having seizures at best. His surgery gave him his life back.
Watch Bert’s story below for yourself. If you would like to share your own epilepsy story contact us! We would love to help you share it!
Living with epilepsy from day to day is a difficult task even on the best of days. Having to go about your day wondering if today will be a day if you have a seizure or not or in some cases how many will you have. Maybe you have gone years without one and just recently had a breakthrough seizure and your pretty upset right now or perhaps you are tired of not finding any control. What ever your situation hopefully these inspirational quotes will give you a bit of hope and peace today.
1 A Quote From Our Childhood
When you have epilepsy it is so easy to think less of yourself. During the years my epilepsy was uncontrolled I really struggled with school and my self esteem took hits as I watched my peers get to do things I couldn’t because of my epilepsy. Maybe if I had this inspirational quote to look at each day I may have been able to build up my self esteem. Remember that your epilepsy is a liar. You are smart, brave, and strong. You have to be stronger than most to still be here fighting today. If you have made it this far it speaks volumes to how brave, strong, and smart you really are!
2 Fight and Appreciate
Just because you have epilepsy doesn’t mean you can’t accomplish your dreams. Just because you have epilepsy doesn’t mean you can’t accomplish something small each day. For years I believed the lie that epilepsy meant I couldn’t be or do what I wanted. It took me too long to figure out otherwise. Write down one big goal today and break that goal down into small accomplish able goals you slowly take each day. For example one of my big goals is to finish my degree and my first small step was finding the right school for me. You can do this!
3 Human Spirit
I am a strong believer that you are never given anything you can’t handle. Yes it will be hard. A journey with epilepsy is indescribably difficult, but you can do this. Just know that no matter how hard it is you are never really alone. It may feel like it sometimes but you are not alone. There are millions that fight this disease to and as someone of faith I believe that God will help you through the most difficult parts of this journey.
4 Share your story
One of the most frustrating things about epilepsy is all the stigma and myths that float around about it. Sometimes on a bad day it can be easy to just play the victim, but we are the solution to that stigma. If each of us proudly shared that story and took the time to educate the stigma and lack of research funding just might start to change.
5 Epilepsy Does Not Define Me
Do not fall into the trap of letting your epilepsy define who you are. As a teen I did just that. I was that girl with a seizure problem and so I stayed in my bubble of fear and didn’t accomplish much. It took me a long time to see who I was as a person. I wasn’t an epileptic I was someone who happened to have epilepsy. There was a difference. I now can say I am a mother, wife, daughter, friend, follower of Christ, warrior, writer, and so many other things. Write down who you are and don’t let your epilepsy into your definition.
6 People Will Embrace You
Epilepsy can be isolating if you let it. Having epilepsy you might lose some valued relationships with friends or family members, but if they abandon you over it than they didn’t really care for you in the first place. Having epilepsy taught what a real friend looks like. A real friend, someone who really cares, is someone who will be with you through your bad seizure days and you will be with them in their own unique bad days. A real friend is someone who when you tell them you have epilepsy doesn’t care because they see the person who you really are despite of it. Let go of the friendships that weren’t what you thought and seek out people who will really care for you.
7 I Won’t Give Up
Things may look bleak right now but don’t lose faith. Their is always hope that you might find control. Their is always hope you will find purpose. Their is always hope you can find a way to live a full life even with this burden to carry on your shoulders.
8 This to Shall Pass
Remember despite what you may be feeling right now or what you are experiencing right now this will pass. You will laugh again. You will be happy again. You will love again. It’s the way of life. We experience great hardship and pain and eventually it fades and we have a time of peace and happiness. Wait for the tide of your epilepsy to go out and try and find that one good thing each day so you begin to see the happy even when life seems like crap.
9 Don’t Stress
Let’s face it there is a lot of things about epilepsy that is out of our control. We can’t necessarily control when or if we will have a seizure. We can’t control what others think about it or say. We can’t control if we receive the proper care in an emergency situation. Instead focus on what you can do. You can make sure those close to you are educated. You can prepare for public outings. You can take your medicine or treatment. You can control how YOU handle it. Stressing over what you can’t control could even make your seizures worse!
Believe it or not you could be the reason someone else finds the strength to keep going on their own journey. Many times we become so focused on our pain and our problems we don’t realize the influence we have on others. Chances are there is someone in your life that you inspire and you don’t even know it. Keep moving forward. By just choosing to keep being a warrior you are making a difference.
If you would like to share your story on this blog feel free to contact me. My contact info is in the contact us section of this website. If you have any quotes you feel should have made the list send them to me! They make it in for a part two!
When you have epilepsy and live with the struggles it brings on a daily basis the thought of ever living an independent life seem practically impossible. There seems to be a mountain of obstacles standing in your way. How is one supposed to handle their epilepsy in their daily life and live a life of not only independence but a life that makes you happy too? I remember how impossible it seemed when everything was spiraling out of control and now I am happily married, have four kids, and have found control with my seizures. While I can’t give you control I can give you my top tips to living a happy life with epilepsy.
Tip 1: Don’t Let Fear Dictate Your Future
My biggest regret in searching for my own happily ever after was letting fear hold me back for so long. When I graduated high school instead of moving out and living in a dorm somewhere and majoring in something that I actually liked I let fear rule me. Instead, I went to a dinky community college and majored in medical administration because I figured a doctor’s office would be a good place to have a seizure.
I also let fear keep me from calling up someone who offered me a job while I was at school. I was too afraid to tell them I had epilepsy so I stayed in a minimum wage job at a grocery store where I was severely mistreated. I stayed at that miserable job for over 5 years because I was lead to believe that if I lost their health insurance my world would end. Every time I mentioned I wanted to quit gasps of horror quickly followed allowing fear to keep control.
I can’t help but look back and wonder if I might have my bachelor’s degree in a field I enjoy and a good career as well if I just pushed past that fear. Could I have had a normal college experience? What friendships did I miss? How many people have I not helped by letting fear rule me? Could I have had a place of my own? Could I have overcome my fear of the terrible bus system and found my own transportation instead of relying on my parents?
One of the best things you can do is to stop letting fear be a barrier. Instead, see it as a challenge to overcome. The bible tells us not to be afraid at least 365 times. That’s enough for each day. Fear is not of the Lord. Fear is a weapon that is used to keep you from your path. You will not find happiness if you let fear rule you.
Tip 2: Planning is Your Best Friend
First, let me be clear I am not a person that likes to plan. I have always been more of a go with the flow person. Enough to drive my husband and friends crazy. They ask what I want to do I would shrug and respond with whatever. My hubby asks where we should eat I again shrug and say I don’t know. It’s enough to drive anyone besides myself crazy.
So this was something and is something I have to force myself to do. Planning is key to achieving that life you want for yourself. So sit down with pen and paper and write down what you want your life to look like. What things do you want? My list was something like this:
find seizure control
have kids? (This was up in the air for a while before baby fever hit)
have a dog
have a career
move out of my parent’s house
All of these have taken planning. I began asking more questions about my options at doctor’s appointments and began to let doctors run more tests. I asked my doctor and others who had seizures if having kids was possible. I was told with proper planning it wasn’t a problem. They put me on folic acid just to be safe. Folic acid is often used to help prevent birth deformities that could be caused by seizure meds. I joined an online dating site and eventually met my husband.
All these took planning. I thought out worst-case scenarios and came up with safety plans to keep me safe. I told my husband on our first date about my epilepsy. To my delight, he didn’t need the seizure talk as he already knew about them and didn’t care I had epilepsy. He knew what to do. I quit that miserable job, went back to school, and found a better job that treated people with dignity. I told employers upfront about my epilepsy after I was hired. I didn’t give this info out in interviews when I was hired because of my epilepsy for a job I wasn’t qualified for. Instead, I told them on my first day and told them what to do if I had one.
Because of life and having babies I have not quite finished my bachelor’s degree. I often whine, complain, and at times lose hope. We are trying to sort out a hiccup now that’s keeping me out of school, but I still want that career I let fear keep from me for so long. I know one day I will have it as long as I don’t let fear get me back in its icy grasp. You can have what you want to with determination and planning.
Tip 3: Practice Gratitude Daily
It can be hard to see what’s so great about life when you struggle with epilepsy. It is so easy to be sucked into the darkness that is depression and other mental disorders. All you want is to be happy and you become so focused on what’s wrong that you don’t see what’s right. When epilepsy sucks you into depression it’s a bit like seeing the world through a funhouse mirror. Your view of life is distorted and you just can’t see the positive anymore.
Good news is that your brain can be trained to think more positively so you aren’t sucked into that depression as easily. A way to do this is to keep a gratitude journal. Write down 3 or more things each day you have to be thankful for. This forces you to see the positive in the most hopeless of times.
They don’t have to be grand things. It can be as simple as a sunny day. That you have clothes on your back and a roof over your head. It could even be as simple as your still breathing today. Practicing gratitude can be a powerful tool for training your mind to see the positive and allowing you to finally be happy. Even when it seems hopeless.
Tip 4: Seek Help From A Therapist or Life Coach
Epilepsy can make mental illness a very serious barrier to a happy, independent life. One of the best things I ever did was to seek the help of a therapist. When depression becomes a serious problem and I can’t kick it on my own I call my therapist and see her regularly till I am better.
There are numerous kinds of therapists and life coaches. I chose one that would respect my wishes to not medicate for my depression. As someone whose major has a strong emphasis on psychology, I decided I wanted to avoid that route and use other methods that would help retrain my brain. It has been a great route for me. However, if medication is something you need to conquer mental illness that is nothing to be ashamed of. My path isn’t right for everyone. Just like there is no one treatment for epilepsy there is no one treatment for mental illness either.
Therapists and Life Coaches come in all flavors. If you need the extra help I strongly encourage you to find one that suits you best. Once again overcoming the fear of asking for extra help can be a life-saving step. It changed my life for the better when I needed it most.
Tip 5: Lean on Prayer and Faith
Last but certainly not least is prayer and faith. Maybe you roll your eyes at this one or this one annoys you because you don’t have a faith or don’t see how your own faith could help. When I say lean on prayer and faith I am by no means trying to imply that with enough faith you’ll magically stop having seizures. That is just dangerous nonsense. By no means, I am trying to strengthen the myth that epilepsy is caused by demons. That also is dangerous nonsense.
What I mean by this is that prayer and faith can give you the strength you need to get through each trying day. When I was first diagnosed I had already walked away from my faith after a year of ruthless bullying at the hands of my peers so I tried to go through it on my own strength. Epilepsy brought me to my knees. I couldn’t do it on my own strength and epilepsy actually brought me back to my faith.
Now, this doesn’t mean it suddenly got easier. It was still as hard as ever. The difference was I somehow had the strength to keep going. I eventually found the courage to do the testing for brain surgery. Something that had petrified me before. I suddenly had strength to push through my fears. When my strength gave out God helped me up and helped me to keep going. There is no doubt in my mind that if I hadn’t leaned on God I would not be here today.
Prayer: Dear Lord, Help me to push past fear. Give me the strength to get through each day. Hold me during the hard times. Bless those who help me during my seizures with wisdom and a caring heart. Help them to know what to do when I am unable to tell them what I need. Help me to take the scary steps I need to take to live a happy life with your wisdom and protection. In your name. Amen.
It may seem hard to believe now but you can have a happy life. You just have to be willing to fight for it. If you have any tips to achieving a happy life with epilepsy leave them in the comments below to help others like yourself. If you are tired of having the seizure talk with people check out my free printable brochure with all the info they need in one place taken from the CDC and MAYO clinic. To help spread awareness check out my epilepsy swag shop on the menu at the top!
This is a question that comes up time and time again when someone learns I have epilepsy. In fact, it would be safe to assume most people with epilepsy have heard this question in some form at one time or another. Frankly, sometimes this question can be annoying. It’s no fault of the asker of course. The asker is just trying to understand and most of us appreciate that, but it’s a very difficult question to answer. This answer may vary from person to person with this neurological disorder. Epilepsy comes in many forms so what it feels like will most likely vary as well. So instead of trying to answer this question on behalf of ALL epileptics, I’ve instead decided to answer this question with my own experience of this disorder. I hope it helps to answer this question at least a little a bit.
I have found that in reality, this question is, in fact, two different questions. The first question is just what it sounds like. What does it, in fact, feel like to have epilepsy? The other of course is: What does it feel like to have a seizure? I consider these two different questions and each could be a post on its own, but here I will try and make the answer brief. In the future, I may write more detailed posts on each question.
Question 1: What does it feel like to have epilepsy?
First, let me start out by emphasizing that epilepsy varies in severity. Some people have several seizures a day and this can cause disabilities and make it very difficult to live a normal life. What epilepsy feels like for someone on this end of the spectrum will be very different from someone like me. I, on the other hand, have found control with my seizures and have found a way to live a somewhat normal life. Before I found control my seizures were spaced out with months in between so mine was much milder than what many others may experience. So my answer to this question will be extremely different from what others might tell you or describe to you.
Before I had found control with my seizures what if felt like was different. If we think of life as race or marathon then having epilepsy was a bit like having fifty-pound weights to your ankles and arms and watching all your peers easily sore ahead of you with no hope of ever catching up. No matter how hard you try to run and catch up you are always hopelessly behind.
Having a seizure can require you to drop what you’re doing for the day or sometimes even a couple of days to recover. When you’re not seizing you are dealing with the horrible side effects from the medication. There were times I couldn’t walk straight. I looked like a drunk girl trying to walk to her next class in high school. The room was always spinning. My hands were always shaking. On top of that, the medicine made it hard for me to learn so for years I believed I was stupid. After all, how could someone try so hard and still only get D’s and F’s? I must have been dumb right?
Epilepsy was a thief that robbed me of my self-esteem, confidence, will power, and desire to socialize. I began to isolate myself because I didn’t feel like anyone really understood. So I felt alone so I spent time alone. Fortunately, I have a very stubborn friend who was talented at taking me places when I didn’t want to go. If it hadn’t been for her I never would have left my room. I truly hope everyone with this neurological disorder finds a friend just like her.
Even now with control it still has an impact. The one thing that never goes away whether you are controlled or not is the fear. The fear you live with every day of your life. Every time I don’t sleep well there is the fear lingering that today I might have a seizure because lack of sleep has always been a trigger. Every time I had my period I wonder will I have a seizure? Although I have a driver’s license I still hate driving. Why? Because the moment I get in that car I wonder what would happen if I should have a seizure behind the wheel. This is why my husband does most of the driving. He knows I live with that fear. It’s the fear I have as I now am in my fifth pregnancy hoping I don’t seize during my pregnancy. Hoping that my medication doesn’t cause a deformity such as cleft lip. Wondering if one day my kidneys will fail because of the medicine I have to take to lead a normal life. Having epilepsy means to live in fear every day. It means forever wondering if you will seize today and if that seizure might be the one that kills you.
Question 2: What is it like to have a seizure?
What many people don’t realize is what a broad question this really is. There are many types of seizures and the answer will change depending on what kind of seizure it is. To learn more about the different kinds of seizures check out my beginner’s guide. For the sake of trying to keep this short, I will share with you what it was like for me to have a tonic-clonic seizure or a granmal seizure. These are what many people think of when they hear the word seizure.
A seizure begins before the actual falling and shaking bit. Many of us have what we call auras and these are warnings that you are about to have a seizure. For me even though I do receive these warnings I often am too far gone to say something to someone. In the Cleveland Clinic when I was having a week long EEG we discovered I act normal and can respond normally at the beginning of my seizures. Which explained why my parents had never seen the beginning of my seizures.
So for me, I begin to notice my eyes jumping or crossing. So, for example, I could be watching a movie when what I’m seeming jumps. This will happen over and over again. At that moment I’m mostly annoyed I can’t get my eyes to stop doing that. If I am gearing up for a tonic-clonic is just doesn’t occur to me to say something. I am already too far into that process for my brain to properly process that information.
As for the actual seizure part, I can’t tell you much. For a tonic-clonic, I completely black out. I don’t know what it feels like to go through the actual seizure as I am unconscious at this point and frankly I am happy I can’t remember the actual seizure. I really wouldn’t want to. What I do remember is the horrible aftermath that comes after.
I usually wake up on the floor. I am usually very confused and if in a place where people are around it’s almost guaranteed people I don’t know are staring at me. I don’t know why I am on the floor or how I got there. I don’t know who these people are staring at me. As if this wasn’t enough to process it’s like the flood gates to all my emotions magically unleash. Like in the movie Two Towers when the Ents unleash the river. All this emotion just hits me. I am angry, sad, happy, everything all at once. I always start sobbing and I can’t control this. Meanwhile, if someone decided to call the paramedics they are trying to ask me a dozen questions at the same time. If I wasn’t so emotional and confused I probably would tell them to go away only not so nice.
I then pass out. A tonic-clonic is a very exhausting thing. It’s like running a few marathons back to back without any rest. There is just no hope of staying awake. If it’s a one and done situation and the person doesn’t have more than one they will most likely want to go home. The ER has never really helped. Usually, they take med levels, you wait hours, and then are sent home and told to call your doctor. In my case, such a trip risks more seizures as the well-intentioned ER doesn’t allow me to get the rest I desperately need. It can take me anywhere from a day to a few days to fully physically recover. Although it can take much longer to recover mentally. Having a seizure in public or in front of friends is embarrassing and may tempt many like myself to stop going out for risk of another.
Seizures are exhausting mentally, physically, and spiritually. It takes a huge toll. They turned me from a happy girl who loved to use her imagination to an isolated suicidal teen that didn’t even want to hang out with her cousins anymore. It took years for me to climb out of that hole and reach out for help. Be that pesky loved one or friend who refuses to let them stay in that hole. Make them have fun every once in a while. They may get angry or be moody the whole time but looking back that is what taught me not to give up on people. The people who refused to give up on me and dragged me to things like drama club and concerts.
I hope this helps you understand even just a little what it’s like to live with this disorder called Epilepsy. If you yourself would like to share your perspective on what having epilepsy is like or having a seizure is like message me on Facebook and we will work something out! If you are a parent or loved one living with someone with epilepsy and want to share your perspective I would love to work something out with you as well! If you would just like to support the cause and help spread awareness you can share this post or check out the epilepsy awareness wear in the swag shop up top!
You may have a done a double take on that title up there. If you yourself have epilepsy or know someone who does it may confuse or even make you angry. My journey is what it is and while epilepsy sucks and does kill more people than breast and colon cancer for me it has been a blessing. One that took me a long time to recognize. I tell my story in hopes it helps someone out there not give up and to try and see things in a way that offers hope for them.
To understand my story I have to go back a bit. You see the year before I was diagnosed with Epilepsy would have been my seventh grade year in junior high. Things started well, but things soured quickly. My once friends turned against me and became my bullies. They took and twisted everything I said so that they could spread nasty rumors about me. It wasn’t long before I was the black sheep. Talking to me meant social suicide so…I was very alone. The day at least two of my teachers participated in this bullying was the day I broke.
Having my once friends and peers bullying me was bad enough, but the teachers participating took it to a new level. It suddenly made all the nasty and cruel things said seem true to me. I began to take it all to heart. I began to believe I was stupid, ugly, and disgusting. I began to believe I was a waste of space. It was then that a rage began to build up inside of me. This rage festered and spread. It destroyed my ability to trust anyone and caused me to walk away from God. In my mind, a God that allowed this kind of betrayal to happen must be cruel and I wanted nothing to do with him.
Fast forward to the next year when I was in eighth grade. Things had gotten a bit better. I had made a few friends and my teachers actually seemed to enjoy teaching. (For all you teachers like those who do their best to help every student…thank you for all you do!) I was faking the Christianity thing with my parents and I had gotten really good at pretending to be happy. I never told my parents how bad things were the previous year, although I am sure they had suspicions. I was also doing my best to keep everyone at arm’s length.
I didn’t trust anyone anymore. My bullies the year before started off as friends, so in my mind, I was always waiting for the inevitable knife in the back. So when I had my first tonic-clonic seizure since I was two, the last thing I wanted to do was acknowledge that this seizure thing could be an actual problem.
I decided to tough it out and pretend like nothing happened, but life wouldn’t have that. I suddenly had doctor’s visits, medication, tests, and not to mention one of my friends had been there to see this seizure. So trying to forget and move on was impossible. Everyone had all these questions I couldn’t answer and for that matter didn’t want to answer. My sleep in Saturdays seemed to disappear as I had to wake up bright and early for medical stuff.
Still, I was determined to do this alone. I was going to push through and try and be freaking normal. I needed this to go away. I needed it to go away now, but my brain had ideas of its own. I continued to have seizures. So I continued trying medications, having tests, and seeing doctors.
The year before my mental state had become unstable and with the added stresses of my Epilepsy it only got worse. I became suicidal and I was isolating myself more and more. I kept trying to do everything on my own and the weight of it all kept getting heavier and heavier. I began thinking that I wanted this all to stop. That if I died it would ease the burden I was to others and all the suffering would stop.
In fact, I almost followed through one day, but my father came home from work early that day. I figured I could wait a day, but in that time God reminded me how much my parents loved me. He made me realize how devastated they would be if I followed through so I promised to never kill myself because I didn’t want to hurt my parents like that. It was the one thing that kept me going and it was the reason I decided to just focus on keeping my breath going. It was the day I chose a semi-colon for my life instead of a period.
We began attending a new church up just over the Ohio/Michigan border in Temperance. It was called Crossroads Community Church. It was my first time experiencing a contemporary church. I had become completely numb and deaf to traditional services. I had no idea church could have electric guitars, drums, food in the sanctuary, skits, videos, and sermons that didn’t bore me. I had grown up thinking church was just a boring outdated thing and that they lied to me about who God was.
The more I attended that church and listened to sermons. The more I went to the Youth Group and listen to Pastor Al speak the more I began to question the image I had of God. These people not only preached about a loving, accepting, graceful God, but exuded those same qualities.
Everyone was welcome in that church no matter what you were wearing, what was in your past, or even who you loved. They just wanted to show us God’s love and love us like God asks. It was a challenge to the image of a cruel God I held.
One night at youth group Pastor Al had this drama group come and perform for youth group. I can’t remember the exact drama or what was said, but I remember that night I felt so broken and tired from trying to do it all myself. I was tired of feeling alone and not being able to trust anyone. I wanted that love they spoke about. I wanted so badly what they talked about. I wanted rest. I wanted peace. Most of all I wanted to be happy.
It was that night I fell to my knees and for the first time asked God into my heart if he would have me. I was tired, broken, unworthy, a sinner who had spurned him and said cruel things to him much like my bullies did to me. To my surprise he took me back. Oddly things got easier.
The burden wasn’t so heavy anymore. I found myself able to carry on. Even though I continued to seize, take meds with horrible side effects, take tests, and see the doctors. Suddenly I stopped isolating myself so much. I began to hang out with my friends more and making new friends at youth group. Suddenly my epilepsy didn’t rule and was just an odd thing I dealt with. I stopped thinking about it so much and began to smile and laugh again.
This was just the beginning of a happy and full life. My epilepsy seemed like such a curse at first. If epilepsy hadn’t intruded into my life I would have continued living my life keeping everyone at a distance. I may have even broken under the mental stress and given in to my depression. I wouldn’t be married or have kids. I wouldn’t have such a strong passion for helping others. While my epilepsy really made life ridiculously difficult it made me stronger. It brought me to my knees so God could heal me, build me up, and transform me into a better person. In the end, Epilepsy turned out to be the blessing that saved my very soul and taught me how to keep going. I wouldn’t trade that for anything in the world.
Do you have your own Epilepsy testimony you would like to share? Just contact me on Facebook .
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