What’s behind my mask

I’d be lying if I said that I wasn’t scared…every time I leave to go to work…every time I go to the grocery store…and every time someone walks past me on the street as I walk my dog.  I silently think to myself as I hold my breath: “God please don’t let me come in contact with someone who has it!”  And then I smile and act like everything is fine, like I’m fine, like they’re fine, like I don’t have a care in the world. But this all just seems like one really bad straight to Blockbuster movie (you remember those days…when movies were really bad; ya I think that’s our lives right about now).  And I must admit…I never really thought I’d ever have to worry about living through a worldwide pandemic such as COVID-19 (seriously who came up with these crazy virus names anyways…I feel like it would be better to call a killer virus “this shit will kill you” because then people will definitely pay more attention to the seriousness of it all)!

But I suppose you also have a different way of looking at things when you live with a chronic illness like epilepsy as I do.  In a lot of ways your life is kind of like a constant pandemic when you have an illness and or disability. But at one point or another you become numb to everything else that exists around you because everything that is around you has the potential to harm and even kill you. That is just my life and I’ve become used to it. The difference between pre COVID-19 and well now is normally I can escape that reality. Normally I don’t have to read about it every two seconds on Facebook…I don’t get an alert every 5 minutes on my phone that someone is dying or has fallen ill…and normally I’m not listening to round the clock news coverage of the impending doom that exists if I step outside my front door. Honestly, I feel like I am being forced to read the obituaries over and over and over again while being trapped in a virtual morgue with millions of other isolated individuals who are currently experiencing the same anxiety and trauma while waking up day after day in this now twisted Twilight Zone we call Earth.  It’s all just so exhausting!

               And what bothers me the most about this pandemic is that society appears to underestimate the psychological impact that will occur to most individuals after all is said and done.  For example, I have struggled with anxiety for many years now, and I am one of those patients that cannot take a lot of medications.  To help alleviate my anxiety, I normally lean on therapeutic resources, such as yoga, painting, going for hikes with my dog, and writing.  I also do enjoy a good lazy day of binge-watching Netflix.  But what helps my anxiety the most, believe it or not, is people…being with friends and family.  So life as I know it now is a bit tough for me psychologically.  I do miss going out for karaoke with the girls, grabbing a beer at my favorite pub, and just randomly window shopping at my favorite stores. With the current pandemic, I now find myself feeling scattered even in my own home, especially when they initiated the stay at home order a few months ago (luckily that has since been lifted). Part of me just wants to pretend like nothing is happening and I attempt to shut the anxious valve off in my brain, but the other part of me can’t ignore the data. The fact that every day more people get sick….the fact that more people are dying….

               But then the rationale side of me knows that this data has always been there, so I find myself a bit at odds with understanding how this all could have even happened in the year 2020.  For example: “Influenza is a highly infectious disease that usually strikes during the winter season. Globally, it causes an estimated one billion cases of influenza, resulting in 290,000 to 650,000 deaths per year. A person can get the virus simply by being near an infected person that coughs, sneezes or talks, or by touching something with the virus on it.” I question why the media or government never talked about these deaths or educated the public about this information before.  And before COVID-19, according to the World Health Organization we have had four influenza pandemics since 1900. Why aren’t we educating people about that data as well?  Like many of you, I wondered: what is the difference between the influenza and COVID-19? I have learned the main difference is the speed of transmission. According to the World Heath Organization: “Influenza has a shorter median incubation period (the time from infection to appearance of symptoms) and a shorter serial interval (the time between successive cases) than COVID-19 virus.” There are of course a lot of other differences, mainly the mortality rate, which is now just an estimate of 3-4% since the death rate of COVID-19 keeps changing. But what are the similarities? The main one for me is how they are both transmitted. Both the influenza and COVID-19 are transmitted by contact, droplets, and fomites (objects that can carry infection). (To read more about the similarities and the differences, I referenced the links down below.)

               With that said, am I the only one that is wondering why it took a super killer virus to teach the world about the cross contamination of viruses? Maybe it’s because I always am concerned about my health that I focus on this data, but I guess I see more in the similarities than I do the differences. People should always be concerned with transmitting a virus when they have one.  It is unfortunate that it took something of this magnitude for all of us to be this self-aware of how the transmission of one virus can take someone’s life. We are no longer talking about a 0.1% death rate as seen in the yearly influenza…we are talking about a rate much higher than that…one that doesn’t appear to be slowly down any time soon. And any death rate, for that matter, no matter how low is important…a person’s life is more than just a percentage…

               And for those that are lucky enough to come out of this without ever even getting the virus, this doesn’t mean they will come out unscathed. As I mentioned before, the psychological impact is going to be quite detrimental to many individuals. Many have lost their jobs, can’t leave their homes, don’t have any real form of socialization (except for social media, which we all know really doesn’t count that much), and what people do hear is constant coverage about COVID-19 (which for many can appear to be depressing and upsetting). So as my phone goes off with yet another COVID-19 alert, you’re probably asking how can anyone escape this right now?  If we are going to find a way to cope with what ever we are feeling in this very moment I truly believe the best way is to acknowledge your feelings (as sappy as that sounds) and to talk about it all, (the good, the bad, and the super ugly), with your friends, your family, your co-workers, heck with anyone that makes you feel comfortable so that you get it off your chest.  Meanwhile, try to keep in mind…we aren’t all going to feel or react the same way to this crisis.  Some people are angry…some are sad…some are scared…some are feeling every single emotion like it’s a rollercoaster they can’t get off…that’s how I feel.

But as trapped as I feel somedays, I do believe there is hope. I do believe we all will come out of this stronger, kinder…and hopefully emotionally healthier because of this pandemic.  Or at least I hope we will.  Do you remember the good ole days when you used to talk on the phone instead of texting or messaging online (and yes this means Facebook too)? Well, maybe it’s about time we all find a way to start talking on the phone again or do Facetime or Skype or something like that. Isolation isn’t healthy even for the most extreme of introverts. And after talking to a lot of my friends and family about COVID-19, I was comforted by knowing that I wasn’t the only one who felt anxious by what was going on.  Simply knowing that I wasn’t alone in how I felt made me feel all that much better. I know I can’t stop what’s going on in the world but being able to open the anxious valve (as I like to call it) and let out all my fears sure feels great! And right about now it’s the best medicine for me….besides cuddling with my dog of course.

During this time, it is important to remember that even the strongest person needs to open that same valve. And I know my rationale side of the brain will never have all the data it wants to make sense of why people are dying…my brain will never know all the information it needs to prevent a virus from happening…I suppose that’s what scares me the most.  I won’t be able to stop something I can’t see…I can’t avoid what I don’t know is or isn’t there…all I can do is live…and pray it never finds me…or you.



One of the most difficult obstacles I have faced since I was diagnosed with epilepsy back in 1992 is surprisingly not the side effects that I deal with…not the looming threat of seizures that I worry about…and not the judgmental people that I have come across…but rather my own self. Weird huh?

I suppose it’s hard to describe how your own self can act as an obstacle to yourself but, believe it or not, it is very possible. When I was first diagnosed, to say that I was upset…well that doesn’t even begin to explain it all. A surge of emotions that I never experienced before was rushing through my body…and I hated it! Everyone in my life…family and friends…they were doing the best they could to comfort me…but all I could say, and think, was: “YOU JUST DON’T UNDERSTAND!”

The reality may have been that they didn’t, but they were trying to understand, and that’s all that matters. But life was different back then. And to put things into perspective, you must compare what it is like to be diagnosed with a disability now versus over 20 years ago. In 1992 there was no Facebook, no Twitter, and the internet was so new that no one really used it like they do today. The ADA laws were still in their infancy, and there were no health insurance protection laws for people with pre-diagnosed medical conditions.

There weren’t any support groups where I lived and my first neurologist…her suggestion for my parents? Well…instead of telling all of us about the New England Epilepsy Foundation…hmm…she told them to send me to a shrink…gotta love some doctors. I can remember going to my school library and taking out any and every book about epilepsy and the brain that I could get my hands on just so I could simply understand a little about what was happening to my body. The more I learned, the more I wanted to tell everyone that they didn’t understand!

The more I focused on people not understanding me, the more I pulled away from everyone. I felt alone…scared…angry…and as a result, I hurt people because I was having a hard time loving myself…let alone anyone else. I just kept pushing people away until they stopped coming around.

You’re probably going to want to ask: “Why the hell would I do that?” Well…obviously I didn’t realize at the time that I was doing that. I guess I was just so wrapped up in my own head space that I didn’t realize I was hurting those around me.

For example, there was this boy…he was my first boyfriend…he was such a sweet guy…so cute…and a good kisser too (ha). We met in junior high (before I was diagnosed) and were friends all throughout my high school years. I remember every time he told me that he loved me, I broke up with him. Ugh….I swear I’m not an awful person…I’m just really bad with emotions and relationships…if only I was as good at talking to people as I am at writing…but that’s beside the point…

So back to this boy…we would always get back together…but then I changed…epilepsy happened…it was like I felt I needed to disconnect my emotions from myself…from everyone…just to function…just to survive…

I still remember the last time I broke his heart…he brought me roses for Valentine’s Day and left them at my locker. I barely acknowledged him and what he did for me. I was going through so much at the time and I didn’t know how to tell him, let alone anyone else, how I felt…I guess maybe I pushed him away on purpose.

The reason I’m telling you all of this is in hopes that you learn from my mistakes. I still have days when I want to be anti-social…but now those days are few and far between. And I still can’t always articulate whatever the heck is going on inside of my head at any given moment (ha)…but now I try.

I genuinely feel bad for anyone I hurt and pushed away while I was going through everything when I was younger…the amazing thing about this story is that all of those people found their way back to me. All of those friends I ran away from…all of those guys that I hurt…all of the family I ignored…they are still there for me now. Ironically, the one thing I didn’t have as a tool for expression and support assisted me in finding many of these people years later after I graduated high school (Facebook).

So chances are, if you’re going through anything serious right now, you’ll say exactly what I did: “YOU JUST DON’T UNDERSTAND!” But I’ve learned it doesn’t matter if they understand…what matters is if they WANT to understand…what matters is if they love you…are there for you…what matters is if they ARE understanding…this IS WHAT MATTERS!

Real Beauty

When I started this blog

I knew there was a chance it would turn people away…

I knew there was chance it would frighten people…

On one hand…

I am openly optimistic about pretty much everything…

On the other hand…

I’m brutally honest…

About all of the raw emotions that I have ever felt…

About all of the tough times I have ever gone through…

And I am NOT sorry for expressing those feelings!

And you should NEVER be sorry for expressing your feelings either!

I don’t care if my post makes people feel uncomfortable…

I don’t care if people judge what I have to say…

I don’t even care if they laugh…

However, I do care if my posts help people.

Even just one person…

To realize that they can love themselves for who they are…

No matter who they are.

May my posts teach you that writing about your life

Is truly the most cathartic experience you could ever have…

May you see that being vulnerable

And strong

At the same time

Is the most beautiful thing in the world.

My hope is that you see that “different”

IS real beauty!


Roughly one billion people in the world struggle with some type of disability. This number makes up a fifth of the world’s population, and every year this number grows. There are all different reasons why and how a person becomes disabled. I could probably write a whole book just about that one topic, but, even though I feel the beginning of a story is always important, in my eyes, it’s our journeys…our struggles…our successes…and even our failures that mean so much more. Think about it for one minute…there are ONE BILLION people in this world that wake up every day, and before they even get out of bed, there are already insurmountable obstacles facing them. They must fight their own bodies and minds just to complete the day…and ONE BILLION people continue to do that EVERY DAY! THAT is AMAZING!

It’s not easy being disabled…no matter what your disability is. I have days when I feel so defeated that, honestly, I simply don’t want to get out of bed, and I just shut out the whole world. Sometimes I even hide inside my own thoughts…it’s easier that way. But I know deep down inside that I am stronger than I realize…just like the other 999,999,999 disabled people that live on this earth. I may not be able to change the beginning of my story, but I know I can change my journey…at any time! Every day I remind myself of that. Every day when I wake up knowing I’m already facing struggles before my feet hit the floor…I remind myself that I can have anything I want and need no matter the challenge…no matter how much my body hurts…no matter how much my brain says to give up…no matter what other people say or do…I am entitled to succeed and to be happy just as much as a “normal” people…and I will be successful and happy…and you can too. All we need to do is try…all we need to do is not give up…I don’t know about you…but I refuse to give up…I refuse to stay defeated…I refuse to listen to those who doubt me…to those who have rejected me…our lives are not determined by our disabilities…but rather by our reactions and actions to the obstacles that we face.

So how do I know all ONE BILLION of us can and will be successful? I just do. Call it faith…call it intuition…or maybe call it a hypothesis based upon my own life with me as the mouse in the maze we call a life. When I tell you that I have struggled THAT it is an understatement!

I got laid off…twice in one year. I had to start my life over in my late 30s. Scariest thing ever by the way. I have done the worst jobs for the worst money you can possibly imagine and felt like I was never going to become anything at all. I have had people say the most judgmental and hateful things right to my face about my disability. I have even had people accuse me of lying about my disability all because they never saw me have a seizure. There are still times when I feel like my life is, well to be blunt, a failure. I’m definitely not where I want to be career wise, money wise, relationship wise….ANYTHING wise….but…I don’t feel defeated. Weird huh?

You probably gonna wanna ask why? Well, I don’t feel defeated because I know what I want and I now know that it takes time to get what you want and to get where you want to be…especially when you have a disability. I will admit…I’m not the most patient person at times…especially when it comes to my life. I sometimes have a hard time focusing on and finishing tasks…it’s because I get bored and I see that I’m not getting the results that I want…the side effects of one of my medications definitely doesn’t help with my concentration which makes this a constant and daily battle.

It took me a long time to realize and accept this part of me, to accept all of me, my faults, my needs, my desires, my likes, dislikes…all of that crazy madness…I suppose that’s why now things are a little easier for me. Right now, I have a good job…it’s not my dream job or the perfect job, but it’s a good job, with a good company and I work with great people that understand and accept me. This alone helps me to get past those bad days. Finding an employer that is understanding of your disability is so important. All ONE BILLION of us deserve that! Don’t accept anything less! For a long time, I was ashamed and afraid to tell people I had epilepsy. I was afraid to tell them about what I was dealing with. I was afraid of being judged…about being looked at differently…I hated being different! It’s not easy to be different, I know…but being silent doesn’t make it better…I’ve been that person being interviewed…seeing the eyes of the person who’s interviewing me look down and up, and I realize that they are no longer listening to what I have to say but rather paying attention to my tremors…I realize they are trying to decide if they want to hire a disabled person like me…those moments suck! People suck! But not everyone is like that…not all companies are like that…don’t give up…

Like I said…I just know…I WILL be successful…All ONE BILLION of us will be successful…all we have to do is get out of bed and refuse to give up!

Press Zero First

Don’t tell me I don’t make sense

When I already know I’m a mess…

Put down the Starbucks

And drop the Apple for just a min…

I know my no-name t-shirt bothers you

But let’s just actually talk for once

Put a quarter in the slot

To press send…

Ohh no…

You forgot

What twenty cents is worth

Hang up

Please dial and try again later

No wait…

Press zero first

You need an operator

I don’t think we will ever speak

It’s sad…


No talk

No text

No skype

What’s that…

Do you know me…

Do I know you…



Absolutely nothing but…

Dial tone……..

One of the biggest obstacles I have faced as an epileptic is surprisingly not controlling my seizures, but rather finding the best way to communicate to those in my life about who I am and what I deal with on a daily basis. For a long time, I completely avoided the whole “communication” thing. To be honest, I was never good at that even before I was diagnosed. I would always over-explain something and go on this wild tangent (a bad habit that I still have to this very day), or I would under-explain (is that even a word ha) and say the bare minimum in an effort to avoid uncomfortable topics.

The irony is when I was first diagnosed with epilepsy, like many individuals, all I wanted to do was talk about my disability. I wanted to ask questions, like if anyone in my family had it or how I got it. I also wanted to talk about what was going on inside my body. I wanted to find a way to make sense of it all, even though I knew deep down inside there was no rhyme or reason for what was happening to me. I guess I just had that instinctive need to work through all of these uncomfortable emotions and thoughts that I had never had before. I was also dealing with all sorts of insane side effects from medications that both me and my parents had no previous knowledge of. Side effects that would linger in my body for decades.

I felt like I was hit by a tornado, and I was Dorothy, whirling around and around and around. I kept trying to talk to everyone in my life about what was going on and where I was, but, like Dorothy, I received the same detached reactions…”I was fine.” “There’s no need to worry.” “Everything was going to be okay.”

But I knew there was a need to worry. At the very least, I had to understand what was epilepsy and what was going on inside of me to make me a different person. But that journey to understanding came at a cost. Some people in my life didn’t understand the “new” me anymore. They didn’t understand why I would do certain things, say weird stuff, or why I didn’t go places. It took me a long time to understand that it was okay if they didn’t understand this “new” me…my life, my journey is for me, just like their life and their journey is for them. We aren’t meant to understand each other’s lives or necessarily accept the paths we take. What we ARE meant to do is to be the listeners of each others journeys. When we stop and listen is when we learn. It look me a long time to learn that lesson. I was so worried about my own journey, I never stopped to realize that others have their own battles at well. Take a moment to press zero…and listen to someone else’s journey…who knows what you might hear..

Pretty Little Girl’s Don’t Cry

Smile pretty girl

You have such a lovely smile

Little girl

Don’t worry so much pretty girl

There are more important things

For us to talk about little girl

Pretty girls don’t talk like that

Little girl

Behave like a pretty girl should

Men only marry pretty little girls

That smile that is

Stop frowning!

Stop crying!

Stop cursing!

Stop slouching!

Behave like a pretty little girl should!

Smile pretty girl

No one talks about their feelings

Don’t you know it’s unlady-like

You have such a lovely smile

Little girl

Why are you crying?

Pretty little girls don’t cry



Little girl?


Are you okay?

Pretty girl?…

Expectations and Virtual Mountains

Learning to smile through the pain of having a disability like epilepsy is both a curse and a talent, neither of which I ever wanted. I suppose that’s why I often find so much comfort in isolation. Well, to be honest, it’s not total isolation. I do have a beast of a dog named Lucy. I could shave my head and where a muumuu, and she still wouldn’t think anything was wrong with me! Gotta love that dog! You see… when I’m alone, I have no real expectations of myself. The make up is off, my guard is down, my hair is a mess, and my clothes definitely do NOT match! Sometimes I even smell…HA! I won’t lie, it’s kind of nice to not have that stress of living up to what other people need of you…what they want…what they expect…even if it is only for a brief moment or so.

Those expectations that people have are often unrealistic and selfish, even if it is placed with the best of intentions. People want you to smile even when you don’t feel like smiling because you have “such a pretty smile.” They want you to come to parties or events when you don’t feel well. Canceling is always awkward to say the least. Some people get it, and some don’t. After a while, you just stop explaining altogether and some people stop inviting you to anything and everything. The question “How are you” becomes a silence filler for uncomfortable times. This is pretty much life wrapped in a pink bow to make the world feel better. Sometimes I wish things where different…

But for as long as I can remember now, I have always been climbing a virtual mountain. One filled with trials, tribulations, and a whole butt load of expectations. A mountain that at times seems to be so breath taking. A mountain that shows me what life is really all about. It makes those moments of isolation so freeing…so calming. Have you ever felt that way? Have you ever been outside when no one is around? When the sun is coming up and the birds are chirping to the rise of a new day? Or maybe you’ve taken a walk in the woods and for a moment you hear nothing at all? No cars, no music, no people? Then maybe, slowly but surely, you hear something else…the wind as it brushes by your face, a woodpecker off in the distance as it pecks away repeatedly at a tree for food, or perhaps…perhaps you are even lucky enough to catch a glimpse of a doe and her fawn off in the distance in a nearby field. Then you catch yourself standing still. Taking it all in…every moment…every smell…every sight. And as the sun hits your face and you feel the cool air brush by again, the last thing to enter your mind is: “If only…”

But at other times, this same mountain brings me to my knees. I am all of a sudden startled by this knowledge that I will never reach the top…that there will be mountains after mountains waiting for me over the next rocky hill. Sometimes I wish I could just stay in that one spot where I hear the woodpecker and stop moving altogether. It’s not a perfect place, but it’s better than climbing day after day after day. The sun feels so warm and peaceful at that spot, and I’m just so tired. I’m tired of climbing. I’m tired of explaining. I’m tired of having tremors. I’m tired of being upset. I’m tired of pretending not to be upset. I’m tired of always having to be strong because I don’t have the time to have the breakdown that I justifiably deserve to have! FUCK! I really HATE this mountain! And I know if I keep climbing, I won’t feel the sun anymore…and that scares me.

Yet, I know me…and as scared and mad as I am…I will always keep climbing. You’re probably wondering why. Why I wouldn’t just stay in that one spot? Have you ever gotten lost in the woods? Had those moments when you felt like you would never get out of that situation? Surrounded by a never-ending trail of trees and shadows? Always hoping that over the next hill you would find your way out and see the sun cast down upon the exit? It’s been a long time since I’ve gotten lost in the woods, but I have wandered deep into the forest, so deep that the sun was non-existent…so deep that I lost track of how far I wandered and got nervous about making my way back. The strange thing is, for as nervous as I was, I never doubted my ability to make my way back to see the sun again (and I’m not just saying that because I had my beast with me). Like I said, I will always keep climbing. My hope is that someday I will reach the top of at least one of these mountains and feel the sun like I’ve never felt it before. It’s not about the challenge for me or even the journey. It’s about that moment. The moment when I can close my eyes and know that I made it over that hill, up the mountain, despite expectations, despite doubts…that I can feel that warmth of achievement, feel a sense of calm, and know that no matter how much I cry, smell, or shake in that moment, it doesn’t matter…I accomplished my goal!

In Safe Hands

In the early 2000’s, I was working for this major automotive company. It was stressful, but I loved it! I had worked my way up throughout the company year after year, and the best part about working there was I made so many friends. It seemed like, well at the time, that I was on cloud nine. The only problem was that I was working and partying way too much. And I was definitely not getting enough sleep. Like I said before, I just wanted to be “normal.” I was in my early 20’s and wanted to do what every other young woman at my age was doing: live their life carefree. The last thing I wanted to be was an epileptic.

 So, if my boss needed me to work late and then come in early the next morning, I’d always said yes, even though I knew deep down inside that I was putting myself at risk for a seizure. If my friends wanted to go out and party  and drink all night long and then wake up early in the morning for breakfast, I’d said yes again, because I was afraid if I didn’t they wouldn’t invite me to go out at all. I was very good at hiding the real me for quite a while until one day at work…my façade melted off. I don’t think I was at work for more than 20 minutes before I knew something was wrong. I could sense it. They always say that epileptics have this aura before they have a seizure…it’s true. Me? I even get a warning sign as well. I have myoclonic epilepsy and it’s normally associated with characteristics like jerking and twitching. Before every one of my grand mal seizures, my left hand and arm jerk upwards in an uncontrollable fashion, similar to when your doctor takes that little rubber hammer and hits your knee to check your reflexes. This same exact thing happened to me as I was walking into work that same day.

I remember stopping for coffee that morning because I was so tired and figured the caffeine would help. I couldn’t have been more wrong. I was so out of it that I didn’t even recognize my warning sign for what it was when it happened. I was walking through the company parking lot and my hand jerked and I dropped my coffee. I think I was just so happy I didn’t spill it on myself or completely empty it on the ground, so I bent over, picked it up, and kept walking. However, the second I got into the office where I worked at the time, I could feel my body wanting to shut down. It was like I had no control. I quickly sat down in a chair and remember my last words being “I don’t feel so good” to my co-worker. I woke up in a hospital hours later.

This is probably gonna sound weird but to me the worst part of having a seizure has always been when I wake up in the hospital. I HATE hospitals! I never hated going to the doctors before I had epilepsy, but, after I was first diagnosed, I had to go all the time. I was either talking to a doctor or being used like a human pin cushion as they drew vials upon vials of blood. You would have thought my doctor was a vampire by the amount of blood they took to check my medicine levels. Then there’s the smell of a hospital and doctor’s office…it stays with you even after you leave. And when you have a disability, the last thing you want is to wind up in the hospital because you always stay there longer than a “normal” patient because it takes you longer to recover from just about anything and everything.

After that seizure at work, I was so embarrassed but at the same time beyond grateful. You see…something completely amazing happened! My boss and all my coworkers proved to me that being “different” didn’t matter at all! My boss came and picked me up at the hospital and brought me home. When I came back to work, I found out what happened during my seizure. I found out another manger helped my coworkers make sure I was safe until the paramedics came. They were all so sweet and asking if I was okay and I just realized how lucky I was to be surrounded by such wonderful people. Years later when I left the company, it was hard for me to say goodbye to so many individuals that had become like family to me. When you have a seizure, you are so vulnerable. Literally anything can happen to you and you wouldn’t know. Having people in your life that you can trust when you are at your weakest of moments is essential. I will always be grateful to those individuals who watched over me that day.


I pretended to be “normal.”

So many things have changed since I was first diagnosed with epilepsy back in 1992, and I’m not just talking about my life. Think about all that has changed in the world in the past 26 years. Now imagine living with a disability before, during, and after those events. For example, the enactment of the Americans with Disabilities Act (ADA) of 2008 helped many individuals like myself. I can remember applying for one specific job in the late 90’s, and the manager told me he couldn’t hire me because of my disability. It was one of the first of many times I would come across potential employers that looked at me differently just because I had epilepsy. I was so naïve that I thought I had to tell that manager about my disability even though I was only applying to be a cashier. I can still remember going home and crying to my mom about what happened. She comforted me as best she could and firmly told me to not disclose that information next time.

She was right…why should I? Was it really an employer’s right to know my medical information? To be perfectly honest, to this very day, I even hesitate to disclose my medical condition on any application. On one hand, I fear the employer might not hire me because I stated that I’m “disabled,” and then on the other hand I worry if I do get the job I’ll be underpaid. Statistically, disabled Americans are more likely to be underpaid and underemployed in comparison to those without a disability even if that disabled individual has acquired the same education with the same skills or even more skills, (according to the United States Department of Labor). I must be blunt…that experience messed me up for quite a while. I now knew that being “different” was unacceptable. So for the next 10 years or so I pretended to be “normal.” It was what everyone wanted, wasn’t it? My family, my friends, and my coworkers, they all didn’t want to be around someone with a scary illness. I could see the fear in their eyes. They didn’t even have to say a word. And I can’t tell you how many times I heard from my Mom and Dad “how much I changed,” and they definitely weren’t giving me a compliment. Before long, I didn’t even tell people that I met and became close friends with that I had epilepsy.   They didn’t even know the REAL me…until one day, it all came crashing down and it was like I was back in 1992 again…just like the day when I had my very first grand mal seizure.

When everything changed…

One word I have come to despise since I was diagnosed with epilepsy is the word “disabled.” Seriously…who the fuck thought up this word? Let’s just break down this word in its simplest of meanings…not abled. And now let’s attach that term to anyone with a medical condition or disease. Am I the only one who sees a problem with this? Like many “abled” and “normal” people, I have certain restrictions that I need to live by; for example, people who have high blood pressure often need to monitor their activity, and even individuals that are on a diet find themselves unable to eat what they want. Okay, so maybe I’m over-reaching with the comparison of an epileptic and an overweight person, but I do have a point. Calling an overweight person fat isn’t nice so why do we still use the term “disabled?” And don’t tell me it’s a legal term, because that’s bull shit! Anyways, I’m getting off on a tangent. Let’s start from the beginning shall we…when my life completely changed.

My freshman year in high school was actually pretty awesome (minus the whole “hey now you’re an epileptic” thing that happened). My mom and dad finally let me wear contacts, so I no longer felt like little miss four eyes (and before you ask, yes, I had been called that many a times by mean little elementary boys who don’t deserve even a sentence in this book and blog). Boys were really starting to notice me, and I LOVED it! My dad on the other hand hated it. I didn’t care though. It just felt so good to finally be thought of as one of the pretty girls, rather than “a friend.” And despite the fact that I was a band geek who played the flute (and no there was no band camp for me), I was invited to a senior party and both the junior and senior proms! I just couldn’t believe it! I wasn’t really popular or anything, and it wasn’t like I was putting out, so it was kind of cool to feel a little special. And even better, I had the best group of friends! They were all a little geeky and eccentric like me so we all got along great! And I must’ve belonged to every club you could possibly imagine during my freshman year.

Things changed though the end of my freshman year…the spring of 1992. One random night, I went to bed “normal” and woke up “different.” It would take about a week before I knew exactly how “different” I had become. I remember waking up in the middle of the night to go to the bathroom. Afterwards, I was thirsty, and all I wanted was a glass of soda. Weird, I know. When I went to the fridge, there was this humungous bottle of ginger ale that my dad bought but it hadn’t been opened yet. I walked across the kitchen to get a glass and to open the bottle. As I tried to open the bottle, I pulled it close to my chest but when I went to twist the cap off, my hand jerked uncontrollably, and before I knew it, the soda bottle was on the floor exploding everywhere! The last thought I remember thinking to myself as I bent over was: “Geez! What the fuck!” But then everything went black. I woke up hours later in Brockton Hospital with tubes up my nose and one hell of a migraine. My mom was sitting next to me, while my dad had to go to work. I was so groggy and felt like someone had drugged the hell out of me, only after banging my head against the wall a few hundred times. As I started to come to, I could feel the burning of the oxygen as it ran through the tubes and into my nose. I kept ripping the tubes out, and I don’t know if it was my mom or the nurse, but they kept trying to put the tubes back up my nose. I wound up going home later on that day. My parents started talking to me about what happened and what the doctors said at the hospital, and all I heard in my head was Charlie Brown’s teacher’s voice….waaawaawaa. Was this really happening to me?

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