What Epilepsy Really Looks Like and a Linkup

Epilepsy My Thoughts


“It is not the length of life, but the depth of life” is the tattoo on my back.  I purposely didn’t put a period on the end of this because my story is not finished.  Just so that you know, I’m going to pour my heart and soul into this post, and it will be a long one so make yourself a cup of coffee and let’s do this!  If you don’t have time to read this or aren’t interested, it’s ok, the linkup is at the bottom as usual.
The whole point of me writing this post is so that I can help someone.  There has to be at least one person out of everyone who reads my blog who feels like they are at the end and that there is nothing left to their life because of a recent diagnosis, a recent bit of bad luck, or just because they finally had the last straw.  Just as a disclaimer, if you need professional help please seek a doctor, this is just a post about my feelings.
You see, there’s a different side of epilepsy that I haven’t shared with everyone.  There’s a dark side to it.  Every time I’ve talked about it here on the blog or during my awareness weeks I have only talked about my story of being diagnosed and how I’ve learned to live with it and how I’ve been so extremely positive.  On my blog you only see the girl with her makeup and hair done, dressed up, and talking about how great my life has been and how living with epilepsy hasn’t stopped me.  It hasn’t always been great though.  That’s just me masking what is actually going on in my brain (no pun intended).  There is a stigma around epilepsy and a few people have told me that putting it out there on the internet is a bad idea because it’s no one’s business and I may be looked at differently.  This is very true, but at the same time, maybe someone who feels the same way I do or felt, will read this and maybe, just maybe, I can help them realize that there is a light at the end of the tunnel and its not over.  You just have to pick yourself up and keep going no matter what challenges you face.
I was never the pretty girl.  I was never popular, and I even tried out to be a cheerleader when I was in 6th grade (maybe 7th or 8th I can’t remember for sure) to be like one of the popular girls because I just wanted to fit in so badly.  I didn’t get in.  Throughout high school I never truly felt like I fit in and it was so extremely hard for me.  I was made fun of in elementary school and high school.  Then, my world changed completely once I had just finished my graduation ceremony in 2005.  I was free.  I could start over and go to college.  Maybe I could find my place in this world.  That all came to a screeching halt the day after graduation.  That’s the day I had my second seizure.  The first seizure we didn’t do anything about because we thought that I had just passed out from being overly tired.  When I was diagnosed that summer, it was extremely hard for me.  Here I was, a girl who had a really tough time trying to find herself in the world and now I’m being diagnosed with a condition I know nothing about.  A condition where I could never live a “normal” life.  My dad had asked me if I wanted to see a therapist because him and my mom could see what a toll it took on me and he thought maybe I would open up to a stranger, but I said no and that I wanted to try and be as normal as possible.  I changed.  I hated everything and became distant and even depressed.  It’s hard for me to even think back on that time without getting emotional because I was just so lost.  I sat down one day and thought there is nothing left for me in this life.  Why am I even alive?  What is the point?  Why me?  What did I do to deserve this?  I started rebelling and I gave my parents a really tough time.  I had no control over my life whatsoever.  The one thing that truly helped me get through a lot was music.  That was the only time that I could just sit down and forget about everything and just let the music flow through my headphones.  I went to a lot of concerts with my best friend at the time.  She helped me get out of my funk, but at the same time I put myself in a lot of bad situations because of my epilepsy.  I told myself that if I want to get drunk I’m going to do it, I don’t give a f.  I look back on it now and the nights where I didn’t sleep or drank way too much I was putting myself in extremely dangerous situations.  I just wanted to forget that I had epilepsy.  I wanted to forget about the hospitals, the doctors, the scans, the testing, the seizures, the numb feeling.  I just wanted to forget that I had this condition and I just wanted to be normal so badly.  I still wish I could forget about having Epilepsy.
You see, doctor’s are just there to diagnose the problem and this is what they do for a living so they don’t know what it feels like to be the patient.  They don’t know what it feels like to have their entire life come crashing down in one simple sentence.  “You have Juvenile Myoclonic Epilepsy.”  They don’t know what it feels like to feel broken, worthless, and numb.  I know that my epilepsy is nowhere near other conditions out there (because there are people who are dying from fatal diseases or children who suffer from multiple seizures in an hour) but recently I had an incident where I stopped breathing and my fiance had told me that he watched me turn blue and was afraid that he was going to lose me.  Living with epilepsy can be done, but to know you have absolutely no control over your body in that 1-2 minutes where you have a seizure is a horrible feeling.  Waking up and not having any recollection of the past few hours because your body had to sleep it off (literally) is such a messed up feeling.  You almost feel like you’ve taken a step back.  You feel like a failure to your body.  This recent seizure where I stopped breathing actually caused me to cry.  I had no emotions other than sadness and anger and I just cried.  I felt like I took multiple steps back because I was doing so well.  Y’all, I don’t live the perfect life that my blog portrays all the time.  I have my struggles.  The good thing about my epilepsy and my types of seizures is they happen when I wake up, so I’m not around people who I can scare the shit out of, I’m around someone who knows what to do.  My fiance told me that he had forgotten about my epilepsy because I’ve been doing really well for so long until he saw me have a seizure.  He described it as one of the scariest moments of his life.  He thought I was dying.
I never forget that I have epilepsy.
I have to take medicine every day, and every time I wake up I wonder if today’s going to be the day that I’m brushing my teeth and I just black out and have a seizure.  I wonder if this is going to be the morning where I have a seizure while I’m making myself breakfast and I actually die.  If you look really closely to the pictures above, I have a scar on my back.  It was a really bad scrape up my entire spine thanks to a seizure, but that seizure could have killed me.  I don’t care if you believe in a higher power or not, but I’m not lying when I say someone was looking out for me that day and it wasn’t my time to die.  I was getting out of the shower that I honestly don’t even remember getting into because it was right after I woke up, and I had a seizure coming out of the shower.  It was a small bathroom and I somehow landed in between the shower, the dryer, the toilet, and the sink perfectly.  The only thing that happened was I scraped up my back.  I scared the living crap out of my poor grandparents.
That’s another topic is how other people feel about it, especially your family.  My parents only witnessed one seizure.  I broke many doors in my parents house (especially in the beginning) because I count my dad breaking down the door (which is why I’m not allowed to lock doors anymore in rooms) to get to me as my doing.  My brother had to find me laying on the ground bleeding onto my notebook because I took a chunk out of my tongue and as I fell down I gave myself a black eye on my bed knob.  My parents never got used to it and they worry about me all the time.  Some people have gotten used to me having epilepsy because they never witnessed a seizure, they just saw me taking my medicine and saw me living somewhat normally.
To any epileptics reading this, I’m not saying that your life is over.  I’m just trying to say that your life will never be the same and that if you see my posts and think I don’t understand what you’re going through because you see my perfect blog posts, think again.  I still sometimes get upset over having this condition.  It’s controlled at this point in time, but the beginning was absolutely horrible.  There are still days where I get upset and wish I had a different brain.  There will be certain things that you won’t be able to do because it’s dangerous for you.  It will be extremely depressing at times but you can get through it.  When I was first diagnosed it was the hardest time for me but I was able to go to college which was a life goal of mine.  I even went to get a second degree which was my MBA.  I was able to get a good job and live life to the fullest, minus being able to go sky diving lol.  I have people in my life who love me.  I’m truly lucky with the life that I live.
If epilepsy gave me anything, it was a voice.  A voice to speak about how it wasn’t easy, but that I got through it.  I got through the dark times even though at one point I didn’t think there was any point to life.  It’s given me the opportunity to speak up and say DO NOT LET YOUR CONDITION OR DISEASE TAKE OVER YOUR LIFE.  Yes, it will be part of your life, but you cannot allow it to consume you.  I had to learn that over the past 12 almost 13 years.  Misery loves company and you can’t sulk.  This only makes it worse.  I know that sometimes you need to just cry about it, but please don’t dwell on this.  That was my mistake and that’s why the beginning was so incredibly hard for me.  I sometimes worry about my future and I worry about having a family because I’m not sure how my body will react with the hormonal changes, but I will cross that bridge when I get there.  When my friend passed away a few years ago I saw something on the pamphlet at the funeral home that was a quote by Ralph Waldo Emerson that said “It is not the length of life, but the depth of life.”  This quote stuck with me through the years because I started thinking that he was 28 when he passed away because he lost his battle with cancer.  I’m still alive.  I’m so extremely lucky to be alive.  Because of this quote I knew that I had to live life instead of dwelling in the past and being upset.  That’s why I’m always so positive.  Don’t get me wrong, I have my off days, but I have more good than bad.  Even with this recent set back I’m still pushing forward because I have to.  If I just sulk I’ll never have the depth of life fulfilled.
Just remember to live life.  There are people out there who have it worse than you and things that you take for granted every day is something that someone else would love to have.  If you’ve read up to here I would like to say thank you.  I wrote this to just let it all out because of recent things going on in my life and I know it’s not the typical post I put up but it’s something I needed to get off my chest.
Now, let’s move on to the linkup and happier things.

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  • vanity andme
    January 3, 2018 at 6:21 am

    Happy new year to you.xx

  • Shelbee On The Edge
    January 3, 2018 at 12:04 pm

    Monica, I applaud your courage and your honesty in sharing your story. It is never easy to share these things, but I believe it is so important to share them. Like you said, in an effort to help someone else who may be too scared to speak. Our blogs give us that forum to use our voices for the better good and I love that you have embraced that and are willing to put yourself out there. For me, I speak much about mental illness and Bipolar Disorder…because there was a time in my life when I was convinced that I would die by my own hand as a result of Bipolar Disorder. But I didn't. I survived and now I have to share my story in an effort to help as many people as I can. So please, keep using your voice, my friend. Your message is important and your positivity is contagious. Thank you for this moving and powerful post!


  • jodie filogomo
    January 3, 2018 at 1:53 pm

    You tell your story fabulously, Monica, and I think it can be helpful to others out there.
    Happy 2018!

  • Jessica Jannenga
    January 3, 2018 at 4:45 pm

    Thank you for such a thoughtful and heartfelt post. I imagine it was scary for your family, reading about your seizues and not knowing how to help.. i appreciate you writing about the difficulty of having a disease, but also how you overcome it and don't let it take over your life. I can relate having EdS. It took me years to come to terms with it and realize i will always have chronic pain. You are a strong person .The Emerson quote is so meaningful!
    Wishing you the best in 2018.
    Jess xx

  • Ruth Maldonado
    January 3, 2018 at 11:29 pm

    Thank you for sharing your story. I have been thinking of you and how you've been doing. This is not on the same level by any means but I get really bad migraines. They show up like I'm having a stroke and my body goes through all the motions that I am stroking. It's super scary. I usually only get them once or twice a year but everyday I always wonder if they will come. The fear of it can be overwhelming at times. I understand so much of what you say (on a smaller level of course) Thank you for sharing your story!


  • jules
    January 4, 2018 at 2:45 am

    I am so sorry to hear this! I had no idea!

    Thank you for sharing, I am sure you will help someone out there and you are very brave to put it all out there!

    xo Jules

  • Nailil Ivaldi
    January 4, 2018 at 4:53 pm

    Monica you are so brave for opening up to us and sharing your story. I can only imagine how hard this is but I love that you have also found a way to be positive through it all.