Purple Day 2017 – Don’t Fear the Purple

Purple Day was started in 2008 by a nine-year-old in Canada by the name of Cassidy Megan. This is a day that those with Epilepsy and those who support us come together and spread awareness. This day is observed globally each year on March 26th to show support for our fellow warriors. While Epilepsy can be a wild ride and sometimes intimidating, know that you are not alone. Here is a a little reflection of my journey with Epilepsy and with a quick search of #PurpleTogether, you can find other inspirational stories about those who travel a very similar road.

___________________________________________________________

Th Beginning of a Journey

I was 19-years-old when I was first diagnosed with Epilepsy, which was six years ago this year. I was a performer with InProv Winter guard, switching into a new college, violist for New Bedford Youth Symphony, and heading out with friends every weekend without a care in the world. Then out of left field, all of that changed – worst part is, I cannot even remember what happened.

Last memory of that day prior was going to a cookout with my friends from InProv and taking a quick stop at Target – next thing I remember, I am in a hospital bed with my friends’ staring horrified and my father just arriving. I had no idea what hospital I was in, what time or day it was, why I was there, could not recall names, and slowly I began to panic.

When I was finally proved to be alert and oriented, the doctor came in to explained what happened. My friends then started stating what they witnessed and at that moment everything was a daze. I remember my dad’s face turning pale, my friends’ were still in shock – now what? I was told I had a seizure in my friend’s car, while she was driving. She immediately pulled over and called 9-1-1 and luckily a nurse pulled over to aid me and them through my first seizure. I had blood coming from my nose, convulsing uncontrollably, completely unconscious, and let out a scream before the event took place. My tongue was currently swollen, I could not remember even getting back into the car and at least an hour or two had passed and I do not remember anything since being inside of Target, which was 20-30 minutes before the seizure. My behavior was fine, I acted normal, then suddenly I screamed and everything took place. The doctor stated I experienced a grand mal/Tonic-clonic seizure. Then quickly reassured me that it was probably a fluke…at least so he thought.

I continued life as normal, of course my parents were quite hesitant. Both my brothers had seizures, although only in early childhood. I grew up around having to help my parents care for them and the painful wait for paramedics. I was already well aware of this life, but their seizures were not like mine – and that was concerning; this normality became unfamiliar. Then about a month later, it happened again.

I was in the bathroom, last I remember I had just entered the bathroom. I was told I let out this scream that you could not  ignore. The dogs started going crazy and my parents began trying to unlock the door. I bet you could guess what happened; I was seizing in the shower. My dad worked on the door while my mom called 9-1-1; they had no extent of my injuries or if I was submerged in water. Paramedics arrived and my dad went with them and yet again, my next memory is waking up in the hospital – but it was different. I did not feel like I was all there. I was way more groggy and confused. I remember my dad pleading with the nurse to not leave me alone as she sent me for a urine sample. I asked her if I should leave the door open, to which she stated I did not have to – I would not have another seizure. 19-year-old me who was desperately grasping for independence shut and locked that door because of that RN told me. Well, guess who again let out that scream in a locked bathroom? Guess how many security guards came to knock that door down? Guess who then got placed in a medical induced coma?

(Once I woke up from my slumber)

A bit over 12 hours later, I finally woke up to my friends and parents surrounding me. I guess they have been there a while, they all took a deep breath in to see me open my eyes. I was convinced it was still the previous day, my dad opened the windows and everyone kept telling me it was a new day. My dad told me what happened in the ER after I went to the bathroom.  He was upset and angry, he knew as soon as a code was called, it was for me. I just sat there, staring at my hands and the wires thinking, this is now my life. This was not going away, this was not a fluke – this is now my life.

__________________________________________

The Sun still Shines

For quite some time, it felt like Epilepsy did nothing but slow me down. My memory has worsened over the years, I can not work as much as I would like, I interfered with my children’s sense of security, I almost lost my own life, and I am no longer graduating with my peers. But in the grand scheme, things were not all that bad. For every negative, there is a positive – you just have to look for it.

Met my wonderful Partner – His name is Adam. He looked passed my diagnosis, accepted the fact I was a single mother trucking through school and working a basic job. When the seizures came, he stood by me and took us in as well as his family, just so I could rest even if my stubbornness fought hard against that. He reminds me that I am only human, that I am still like anyone else. For someone with Epilepsy, sometimes that is exactly what we need to hear. We are people too. Even with my waning memory, he is patient with me and even aids me. He is a reminder that I am safe and I am not alone. When my medication side affects decide to take over, and I will never forget this, he held me. He reminded me this is not me and he knows that. He reminded me that no matter what, we will get through this and we will get me. For the first time, someone understood. He understood. I will never let that memory fade.

Friendships Grow – I have made some wonderful friends through Epilepsy – whether it was through support groups or becoming close to those around me already. There is one person I would like to mention specifically, that is my long-time friend, Maria. She may not know it, but she did pull be out of a spiral. After my accident in 2016, I was lost – I worked very hard for 4 years to be told I could no longer continue because of something I cannot control. My daughters’ would cry every time I left the house thinking I would not come back or come back in blood as I did that time. My partner was worried about me when I would not respond – as that is what happened shortly before the seizure. I had a lot of guilt that became depression – I also had anxiety flaring up alongside it. Maria stood by me, she listened, and she pulled me up – probably unknowingly. She got me back into music which was a huge outlet for me growing up, she made more of an effort to check in, she came by now and then, and she brought me back into reality. There is a lot I never say out loud, but she still understood. I could never thank her enough

Passion for Pediatric Nursing Grew – I always liked pediatrics, but I had an amazing experience in Maternity and though perhaps that was my calling- until pediatrics. I will not forget the amount of children there for their first seizure or had been diagnosed with Epilepsy already. These children were afraid, theses families thought of it as a dead end, and in that moment, I imagined my family. I remember being in their shoes, just older. I took time with these patients, one patient I walked with around the halls just talking about Epilepsy and our seizures. They were grateful, they had hope, they saw a light – and I will not forget that. If I could instill that in more people, I could never complain about my job. In that moment, I found my calling.

Family Growth – Although, I hate to admit my girls may of had to grow up quick in some aspects and I see it every day in my oldest. Once they were able to grasp that mommy had “accidents” (what they term seizures), they had never left my side. My oldest does not like the idea of me sleeping alone, she sleeps besides me when my partner is not there. My youngest watches and reminds me to take my medication, she even learned which bottles were which. They grew interested in the medical field, my youngest always dressing up as a doctor during play time. My oldest is always hugging me and reminding me that “it’s okay mommy,” and I have her. Each moment we truly cherish, even at their young ages. While yes, I have a lot of guilt their first memory will be mommy being unconscious and convulsing, I am thankful for the bond that formed.

Meeting Fellow Warriors– It took me a while before I started seeking support from others with Epilepsy that may be around my age. For a long time, I wanted nothing to do with my condition and wanted it to just go away. I went through being made of, losing my independence, losing my license, almost losing my job, and feeling like I was incapable of functioning on my own. That was far from the truth in reality, but at that time, that felt like my reality. I struggled alone for quite some time, then I finally found support within a group and a girl I met online. Along with others we formed our own support group and it has been nothing but a blessing. We are able to be there for others so they do not have to struggle alone and we are there for each other when we go through times of darkness.

Gaining Self-Confidence – I chuckle when I reflect on how Epilepsy gave me confidence after turning me into a hermit. I was at a low that no one quite realized, but as I grew with Epilepsy – I started to gain confidence and resiliency. I became determined to not let it stop my ability as a mother, student, partner, and musician. I became determined to prove that I can still take care of myself and work. I stopped listening to the negativity that surrounded me. I wanted to be more than my illness, I wanted to be me. Of course, I understand all of this is still within limitation, but I can still have a fulfilling life.

____________________________________________

Remember, you are never alone

At the end of the day, at this present time, Epilepsy is here to stay for most of us. Whether it is having seizure or the side affects from medication and repeated trauma, it will be part of us forever. We must learn to embrace it and spread awareness in hope that one day, there will be a cure. Embracing Epilepsy can be hard, but you are never alone. Take a look at the #PurpleDayProject – support came in from the United States, to the United Kingdom, to Austria, and back again. There are support groups for just about every country and region. There are support groups online, in person, and wonderful medical professionals out there who will help you along your journey. You are never alone.

Your journey is what makes you,  you. We will have bad days, and we will have good days – that is human nature. It is okay to not be okay, it is okay to wish for a different path. Just remember, you are here because you are a warrior. You are strong and you are reliant. You did not  choose to give up, even if you were on the brink of making that decision.  Cherish the moments of happiness and embrace the moments of sadness with positivity.

You will prevail.

Promise.

Embarrassment and Humility: Taking Control

Epilepsy comes in many different forms and strike us in many ways. Some people have auras, which allows them to feel when a seizure is coming on. Some people, like myself, have no idea when a seizure is coming until you wake up in a hospital bed not knowing what day it is or who is around you. But something we can all to relate to on at least one occasion is having a seizure in public. No matter what type of seizure, it can be humiliating, embarrassing, or overwhelming for that person. We all have our own ways with dealing with these type of situations, but here are some tips, tricks, and methods to get you through the post seizure madness.

__________________________________________________________________

Looking at our emotions

Some people may report feelings of embarrassment, humiliation, or feelings of being overwhelmed after a seizure. To help better ourselves and ease these feelings, we must understand where these feelings may arise. Embarrassment itself is a very self-conscious emotion. No one else will experience this emotion but you and not everyone will experience it in the same manner. Embarrassment usually arises from someone feeling as though they failed to act appropriately socially, a sense of guilt or shame, and a feeling as though their guard was let down and their pride was hurt. It tends to be triggered in social situations, like having a seizure in public.  It is also a very socially connected emotion.

In my opinion, having a seizure is a very vulnerable state. You lose control of your body, your thoughts, and your surroundings. You no longer can protect or shield yourself; you can no longer care for yourself and well-being. Your body is just there, on display, for some undetermined amount of time, without you having any control. This can be very overwhelming and trigger a range of emotions. But luckily, there are different ways to deal our feelings.

__________________________________________________________________

Remember: Take Control

How do you take a control when you completely lost control of yourself in front of a crowd of people? People are social and emotional creatures, they will mimic what you project after a traumatic event more often than not. One way to take control is by changing the mood of the situation. One way to do this is by displaying confidence. People will ease their tension and divert attention when they see that you are aware of what is going on and show a level of competency. Everyone will have their own way of taking control of their situation and easing the fears of those around them; another example would be through laughter. While yes, why should you have to worry about how those around you feel; you will find that being able to break the tension and having a sense of control in the smallest ways will help ease your feelings of embarrassment. Even if you only start with taking control of your own thoughts after a seizure, in due time, you will be able to apply it to the masses.

__________________________________________________________________

Laughter

Laughter is the best medicine While yes, there is nothing funny about having Epilepsy or a seizure, laughter can be used as a coping mechanism. If a seizure was to occur around friends or with someone whom you are close and comfortable with, try making light of the situation. I have heard some people say “yeah sorry, my brain malfunctioned” or “what do you mean, you do not pee yourself too?” While this can be very hard for some people to poke some fun at, especially early on in a diagnosis, some people find this a way to deescalate the tension and worry within those around them.

When people see you crack a smile or treat a situation in a relaxed manner, they also tend to relax – seeing it as not an emergent situation. They tend to stop trying to overcompensate for your feelings by being overly concerned and overbearing. Some people want their space after a seizure – a good way to make someone feel safe and give you that space is to make the situation light. This does not have to be directly through laughter of course, one could just simply explain, “oh this happens a lot, nothing new” then point out a positive in the situation. That person or the surrounding people will see that you are handling the situation in a positive way, therefore make it easier for them to feel positive about you.

 How to apply to self: You can apply these methods on a personal level to. Take a moment to lighten the situation from within whether it is through laughter, pointing out positives, or simply telling yourself “here we go again, I got this.” Be positive, be uplifting – you are doing amazing.

__________________________________________________________________

Education

Education? Who is in the mood to give a lecture on Epilepsy and seizures after having one? Probably no one, but there are some beneficial factors for giving a brief synapse of your condition or type of seizures to those around you. Quite similar to what I mentioned in laughter, it helps people ease up and feel confident in your ability to care for yourself. It eases the tension and in return will help you feel less embarrassed or overwhelmed due to being moved out of the spotlight.

Have you ever noticed that nurses tend to give a sigh of relief when they know you have a history of seizures? They are able to make the mood lighter for you and give you the proper time that you need. Aside from the fact that it is probably less work on their behalf, they have confidence that you know what to do to care for yourself. This diverts attention away from you and allows you to reconnect with yourself. This is even more true for the everyday average Joe. If you can show off your knowledge, their attention will go elsewhere and ease the feelings of embarrassment.

 How to apply to self: Remind yourself, you know yourself and your condition best. You know what to do; you know how to manage your seizures. Boost your confidence through what you know. You are a smart cookie, and a tough one at that!

__________________________________________________________________

Getting Answers

Sometimes we get embarrassed when we do not know how things were perceived. The unknown can be quite scary and in the realm of Epilepsy and Seizure Disorders, that unknown realm can be our best unfortunate friend. Finding answers gives us a sense of security and helps us feel calm. Sometimes after a seizure, you need to do just that. Ask what happened, ask who was around, do not be afraid to approach people. You may not see it in the moment, but they want to help – most just do not know how. They are willing to answer and be there for you. They are not passing judgement; although it may feel that way because we did something atypical, yet typical for us. Gain control by getting answers and making the unknown known. You will have a better sense of realizing how people actually feel and that the situation was not as bad as you think.

 How to apply to self: If you are uncomfortable with approaching people, ground yourself. Look at yourself, feel what hurts, see how much time has passed, think of the lease severe seizure you had. Try to answer your own questions by observation and feelings, give yourself that validation that it really was not as bad as you thought. Let yourself breathe.

__________________________________________________________________

Moving Forward

This may be easier said then done for some. How do you just “move on” from having a seizure and becoming what you perceive as a public spectacle?  First, take a moment and breathe. Ground yourself to the present, remind yourself that you are okay. Collect your thoughts and feelings and when you are ready, move one. Literally and figuratively. Just get right back up and keep moving forward. Thank those around you for their help and support, reassure them that you are okay, and walk away like it never happened.

Now, this may require quite a bit of practice and the “fake it till you make it” theory, but there is no reason to linger on something that is not making you feel good. Let your mind move forward, do not dwell on what happened or could have happened, do not put all your focus on the seizure itself – at this moment focus on yourself and your well-being. You are safe, you are secure. This will also no longer make the seizure the focal point. When people see you moving on, they know it is safe for them to move on too. When people see your bravery, even if you must fake it at first, they will be brave for you. You have a lot more control than you think.

 How to apply to self: While even doing this on a personal level only may be difficult, just give it a shot. Let your mind go. Do not get wrapped up on focusing on the seizure and the event, focus on the now and go from there. Prioritize your safety and find comfort in knowing you are still here, you still have a pulse, you still have life left in you. You can get through this, you will get through this. Redirect your attention and focus elsewhere

__________________________________________________________________

Forgive Yourself

You may not feel like you are mad at yourself or that you are blaming yourself, but on a deeper level, that just may be the root cause Even if it is not the situation for you specifically, still take the time to remind yourself, this is part of you – this is NOT you. Epilepsy and Seizure Disorders do not control you or your life. It may try for 5 minutes or maybe even 10-20 minutes, but remember, you are a fierce warrior and you will take your life and time right back and hold onto it longer than it ever could. We cannot control every aspect of our life, with or without seizures – unexpected things will happen, but if we can make peace with ourselves, we are one step ahead.

You are a Warrior.

Keep strong.

__________________________________________________________________

Looking for how to handle with Seizures in Public?

Click the link below!

http://thestorminsidemyhead.com/2016/10/seizures-in-public/

 

Fireworks and Flickering Lights

Fireworks

This blog was originally written for Guy Fawkes Night/Bonfire Night which was celebrated November 5th in the U.K. (see the post here) The more I thought about it and searched around, the more I saw that it can be difficult to gather information on how to prepare for holidays that involve firework displays and flickering lights. Here is what you need to know before going out and celebrating.


Get packing!

                Before heading out to your festivities, make sure you have a few things handy such as:

  • A watch/charged phone with a clock
  • Your medication(s)/extra medication
  • Something to drink/snacks
  • Emergency medication
  • Insurance card and picture ID
  • Medical alert ID – if you do not have one, take an index card and write in big letter “Medical Alert” and on the back place your name, date of birth, medication(s), diagnosis, and emergency contact

It will also be beneficial to have a plan of action developed between you and whomever it is you are attending festivities with. This way, everyone will be on the same page and prepared if a situation occurred. You will also want to discuss how emergency medication should be administered and when to call an ambulance. What else may be beneficial, of course depending on the type of seizures associated with your Epilepsy, is preparing a med-pack/first aid kit. This can include items such as gloves, bandages, notebook and pen, hair tie, and anything else you may need specific to your seizure (find out about my med-pack here: http://thestorminsidemyhead.com/2016/09/epilepsy-med-pack/)


Let the Show Begin!

While firework displays can be absolutely captivating – it may send those with Epilepsy, especially Photosensitive Epilepsy, into a bit of a tizzy. Here are some quick tips to help reduce the chances of triggering a seizure:

  • Take your medication on time – things can get hectic when meeting up with friend and celebrating but be sure to set an alarm just in case so you remember to take your medication. This is your first defense against a seizure.
  • Get sleep before the event – you will want to make sure you get plenty of sleep, especially if you have a long night ahead. Lack of sleep get lower your seizure threshold and the more rest you can get the better.
  • Eat, drink, and be merry – Be sure to stay hydrated and get a proper meal in. This will help increase your seizure threshold and decrease the chance of a seizure occurrence.

←Now for the Finale→

  • Cover one eye – do you start to feel funny the colorful lights glisten? How about during the finale? This can be tough for those with Epilepsy but surprisingly, cover one eye can be beneficial in preventing a seizure. This reduced the amount of visual stimulus coming into the brain; therefore, the brain does not have to work as hard to stay calm.
  • Do not sit up close – that may sound like bummer but the further away you are, the less likely it will trigger a seizure due to the light being less intense as well as the flickering being reduced by the fireworks.
  • Polarized sunglasses – wearing sunglasses at night may sound silly but, this can actually help reduce your odds of a seizure – especially for those with Photosensitive Epilepsy. Now, they are probably going to be more of use during the day, but if you know the flickering of the fireworks or large bonfires will probably leave you feeling uneasy, go pick up a pair. If you are wondering what type of lenses, some research articles suggest blue lenses but again, this depends on the person.
  • Let someone else drive – it has been a long night, you watched a beautiful light show, and now it is time to call it night; well for some. On your way home, if you are able to drive – ask someone else to. This will not keep yourself safe, but others around you too. Seizures can strike at any time and is better to stay on the safe side. Do not be afraid to ask a friend.

Do not forget, at any point that you begin to feel an aura or a twitch – tell someone. Let someone know that you do not feel okay and get yourself to a safe area. If you know it will result in a tonic-clonic/convulsing type of seizure, get low to the ground and away from the waterfront if you are near one. Make sure you are not near any hard objects and that someone is with you and ready. If you are unsure what the resulting seizure may be, take the precaution and get low.


Are You Ready?

                While it may seem like a lot of work, your health and safety are worth it. No one wants to spend a holiday in the hospital while everyone else is out and about. Take care of yourself and follow these tips to ensure a safe time and wonderful time/


Do you have any tips and tricks you would like to share? Remember these tips can be used for multiple holidays that may involve:

  • Flickering lights/flashing lights
  • Fireworks
  • Late nights

Onsies for Epilepsy

Hey There!

To all my fellow warriors, fighters, and those who love and support us; November is Epilepsy Awareness month. I challenge YOU to post a selfie or a group photo in your onsies with one epilepsy fact to your social media page. Tag it with #onsiesforEpilepsy this November to help spread awareness and for a chance to be featured (with your permission of course). Please join us in spreading awareness all throughout November and feel free to drop a photo below in the comments!

14650300_10211139212736322_832220277355812493_n

←All types of onsies are welcomed; as well as pets→


Coping with Epilepsy – Social Acceptance

excision-33594_1

The Social Side Effects

Epilepsy affects many parts of our lives; friendships, family, work, school, relationships, and so on. There can be negative social ramifications such as losing what was once best friends, family distancing themselves, or coworkers and colleagues becoming hesitant when around you. Some of us deal with stigma in our daily life followed by shocked faces and funny looks. But there are also positive outcomes like finding new friends, building stronger relationships, and finding new opportunities that you never knew existed. I have recently written a post on self-acceptance of epilepsy and the journey it takes to get there – which can be quite long. But how do you deal when others are having an issue of acceptance? How do you cope with the loss of friends and the distance of family members? You will be surprised with how similar both roads are. Here are some tips I have learned along my journey.


Self-Acceptance

First and foremost, you must accept Epilepsy to a degree within yourself before you try to talk to friends and family about it. Of course it is possible to go ahead or simultaneously travel the route of personal acceptance and social acceptance but things will become easier if they are already accepted within. I often find topics to be easier when I understand them for myself. Even if you do not completely accept the idea of Epilepsy entering your life – at least begin the process of understanding Epilepsy or perhaps your process will start here.

Educate

As I said in my last post – education is key. Educate your family, friends, coworkers, and colleagues on Epilepsy and your type of seizures. This will help them gain confidence in your knowledge about you condition as well as giving them personal confidence on how to help you. People are terrified of the unknown – they do not like to be caught off guard and some do not like the feeling of responsibility that they did not ask for

  • Erase the Stigma: Education is also helpful in removing stigma. “You have Epilepsy; I am not sure if you can do that” – have you heard this before? This blank statement usually comes from people who do not bother to ask you about your Epilepsy or do not listen to you but rather hear the term Epilepsy and revert to what they know. There is a lot of information out there, but from personal experience I noticed people tend to become fixated on the worst case scenario. They will avoid giving you a chance at something or inviting you somewhere because it avoids a potential risk. While yes, in some cases this is the best way to go, but unless the risk is involving your life being placed in harm’s way, then vouch for your right to have a chance. Educate them so they know how Epilepsy affects you. Step by step, this will help erase the stigma we face daily. That person may become inspired and tell three other people “did you know a person with Epilepsy can_____” Because we CAN and we WILL break these walls – give yourself a chance and others will follow.

Reassurance

While the idea of consoling someone older than you such as a parent or caregiver or consoling a friend on your condition may seem funny; they need reassurance just as much as you do. Some parents/caregivers may place the blame of Epilepsy on themselves or feel that it is their fault. They may feel that if they did something differently, you would not have to go through this journey. They may begin to harbor guilt which can manifest itself into arguments or unwanted distance. It may be beneficial to sit down and reassure them that this is not their fault – it is a random circumstance. Do not forget to remind them that no matter what, you appreciate what they do – they are going through a hard time right along with you. This can become emotionally overwhelming for you – as you may not understand why they are emotionally all over the place when YOU are the one going through Epilepsy in the literal sense. Do not forget they travel this road too as they watch every step you make.

Communication

Always keep a clear line of communication. Communicate your feelings, your concerns, and do not be afraid to ask them about how they feel or what their concerns may be. Sometimes this can be an emotional experience – you may hear things that upset you or you may not know how to react. This is okay. It is better to have things said and try to work through it as a team then harbor feelings of resentment, guilt, and/or fear which can add stress that is not needed. This can be therapeutic to both yourself and the other person.

Grievance and denial

This may be difficult to deal with when it comes to family – even peers. Some people may not believe you at first – this could be out of their own fear and/or wanting to avoid the situation. Some may truly not believe you and see it as “attention seeking” and more of a behavioral issue. One of the hardest things you will have to do, but yet one of the boldest and bravest, is to sit with these people and explain to them what is happening. I know it may sound cliché or redundant, but have a serious heart to heart, let them know how this makes you feel and ask them why they feel that way. This may be something that can be easily worked out or something that time itself may have to work out. Know that just like you, family and friends will go through a period of grievance that their loved one’s life will be changed and acknowledging that difficulties are going to come. It is hard to watch someone go through a condition like Epilepsy where they can feel helpless at times.

  • My perspective: I remember when my brothers had seizures – way before I developed Epilepsy myself. I remember standing there feeling like I could not do anything and with my elder, younger brother being essentially non-verbal – I wanted nothing more to experience what he did. Granted, I may have cursed myself at a young age but I wanted to help him and help others understand what he was going through. Family and friends will go through these emotions as well – they do not know what they should/can do. It is going to be part your job to help them along and educate them. This can be done either by giving them pamphlets, links to support groups and blogs, having them come to neurology appointments, or simply talking about your condition with them.

Loss of friends and distance of family members

While I wish I could say this will never happen, realistically it could and is something to be prepared for. Epilepsy is a lot to handle on your own – there will be times where you need help. Some people may have very mild cases and may not need the extra reliance. But for those of us who will – friends and family may not always be the most understanding. Once they go through the initial shock of the diagnosis – some may decide to make their distance. This can be an emotional time as well as close friends and family members may become non-existent. If talking to them and giving them some education on the topic does not help them cope; unfortunately, you cannot force them to stay and you should not have to. This acknowledgement can be hard to cope with but remember this; you do not need people like that in your life. If someone cannot accept you for both the good and bad – they do not deserve to be in your life. A true friend and real family will never walk out on you. They will never degrade you and they will never talk down to you. You DESERVE better than that. You WILL find new friends and new support – you may become closer to some people who were originally distant. With every person who walks out, a new person will walk in. You deserve nothing but the best; remember that.

  • Friends that leave and want to return: On occasion this may happen; a good friend might take a hiatus and come back into your life expecting you to welcome them with open arms after they left you at a low point. I will say that I cannot counsel you on what to do – this is a personal decision. What I will say and recommend is you have an open conversation without judgement and keep an open mind. Everyone copes differently. Perhaps they rethought their actions or maybe they came to a point of acceptance. It is hard and difficult decision to make; but everyone copes differently. It is entirely your choice to let this person back into your life and no one should ever judge you for the decision you make.

Strength, Courage, & Positivity

 Another subject that may sound rather silly but does help a lot is staying strong and courageous throughout your journey as well as keeping a positive attitude. While you should do these things for you own self-acceptance – it promotes social acceptance as well. When someone can see that you have a control on your feelings towards Epilepsy – it gives them comfort and gives them courage to take on this journey with you. No one else can experience Epilepsy the way you do and everyone will experience it differently. If you can take it on with a positive attitude; it will attract the masses and give them strength and courage to stand beside you as well as give them hope. As a family member, friend, or caregiver – it can be hard to stay positive at times; especially when you are witnessing low points of someone you love. But the positivity you have held all along will shine through another person when you cannot keep your head up on those low days. You will have encouraged and built a strong support system on pure strength, courage, and positivity.

Social Acceptance

While the journey may be tedious and may have to be restarted with every new social situation – it is worth every step. You will find out the strength of your support system, friends, family, and caretakers. You will begin to understand others better and on a different level than before. You will also meet new friends and extend your support system. Each day, you will begin to knock the walls down of the stigma that surrounds Epilepsy and Seizure Disorders. With every step you take, you are one step closer to not only helping yourself, but everyone around you and the Epilepsy and Seizure Disorder community as a whole. You are a warrior. You are a fighter. It may be tedious – but you will get to where you need be. Promise.


Never Let Anything Stop You

image-1

Here are some of my accomplishments despite the stigma and despite Epilepsy

  • Top left: I got accepted into a Leadership program at my college
  • Middle Left: I was a volunteer at a pediatric oncology clinic and became camp counselor at a pediatric oncology camp
  • Bottom Left: I currently work at a local hospital
  • Middle: My little family – my two beautiful girls and loving partner
  • Top Right: I was inducted into Sigma Theta Tau International – a nursing honor society
  • Middle Right: My first love will always be music. This year I finally had time to get back into it with a help of a close friend. I currently play French Horn for a local Portuguese Band
  • Bottom Right: I am senior in a BSN program to become a RN

Share your thoughts and your accomplishments! Together, let us knock down the walls of stigma and become one step closer to social acceptance

 

Acceptance.

 ←PeaceLoveAcceptance→

 

Something we all strive for as social creatures. Acceptance from peers, colleagues, and coworkers. We even strive for self-acceptance – for example an acceptance of a new condition or issue within. For some of us, coming to terms with Epilepsy can be a challenge. For some, this challenge is extended to family and friends while we struggle with accepting it ourselves. How does someone ‘accept” something they never asked for.


Education

I could never stress this point enough; education is key. It is the key to acceptance within social standards and within ourselves. Things become harder when you do not know the root and cause or how things will play out. For some of us, myself included, we never get the “cause” or satisfaction of knowing why Epilepsy decided to choose us – it just happened. But for some, they know – they have some understanding. While this does not mean one is harder than the other, educating yourself on either personal factors or possibilities can help ease your stress of the unknown. If you are newly diagnose and do not know much about Epilepsy and other Seizure Disorder, look it up! Educate yourself as much as possible. Never be afraid to ask your specialist a question or to rule out possibilities you come across – that is part of their job and you may think of something they could have overlooked!

Look up stories, check out credible sites, talk people who have been living with Epilepsy, join support groups – do anything you need to in order to educate yourself and get a better understanding. The unknown will slowly become the known and you will be one step closer to acceptance

    Be Honest with Yourself

At first, we may be a little bit in denial about the extent of our condition. We may not want to accept that it will/has changed our lives or the true severity of it. We may feel embarrassed or overwhelmed with everything going on – but we will not get through it if we cannot be honest with ourselves. This can be hard, very hard. It is okay to feel overwhelmed, angry and upset. It is okay to wish this has never happened. But be honest with yourself on how you feel and try to find out why. “Why do I feel this way?” It could stem from a lack of understanding or social rejection. It could stem from watching a close family member or friend go through it. You will never find an answer if you cannot be true to yourself.

It took me years to accept my condition entirely. Does this sound silly? Maybe. But it was not until I saw the impact of sharing my story – even if it was the tiniest bit of information, it still made a big impact for someone else. Only then did I realize I was not being honest with myself. I told myself I accepted it when I truly never did – I was afraid of the stigma. I told myself it was not big deal, when in reality it was. It changed my way of life, my friends, my support, and my interactions. I was in denial that it ever affected me at all; but every hero falters, everyone has a heart, and everyone feels – it will affect you in some way and that is okay.

Grievance

Grieving? We are not dying, but simply have Epilepsy. You are right – but this still can be an emotional and upsetting time when the diagnosis is given. You are right, it could be much worse – but let us have time to adjust to the changes, the constant appointments, the medication, the brain fog, and the stigma. Let us have our moment of sorrow for something we never asked to be placed upon us. We all grieve differently and we all take different losses with Epilepsy – a loss of independence, loss of the ability to drive or to work, loss of a dream we were chasing…it is okay to be upset.

More importantly, allow yourself time to be upset and time to let reality set in. You will not be able to accept something you harbor hate or dislike towards. Talk it out with family, friends, significant other, or even your doctor/specialist. If you need some extra help, go seek it – go to counseling if you have to, it is okay! Epilepsy and mental health go hand in hand more often than not. You will be surprised how many of us have mental health conditions alongside our Epilepsy, reach out to us – we exist.

Perspective

When you first get a diagnosis that may potentially change the usual flow of life – do not dwell on what is lost, but focus on what is gained. Yes, allow yourself time to be sad but then allow yourself to be happy. You may have met new friends, you may have a stronger support system, or you may finally have answers to questions about yourself that you have been afraid to ask. Perspective is everything some times and with any type of new diagnosis, try your best to keep a positive outlook. While yes, Epilepsy may be part of your life, it is NOT your life and it is not YOU. You are you, and you need to be the best you that you can be. Do not let Epilepsy stop you, but empower you. There are positives to this. Remember: You can still live a normal life, you just might need to do things little differently or take things a little slower. But life will go on, and you will too.

If you are struggling with keeping a positive outlook, I challenge you every morning or every night (or both!) to say three positive things about yourself and one about Epilepsy/Seizure Disorders. It can be small thing such as “I am alive, it is sunny, I have a home, and I did not have a seizure.”

Strength & Pride

Once you begin to look at things with a more positive outlook, you will slowly begin to find strength in new places and a new sense of pride. Your journey may test your limits but it will only make you stronger with each passing day. You will gain pride in every accomplishment, no matter how small or large – you were able to still continue on despite your adversities. Take pride in your journey, take pride in your strength and let your strength keep pushing you forward as it continues to help you grow.

Acceptance

Once you understand, once you allow time for your emotions to pass, and once you change your perspective – only then can you begin acceptance. Only then, will you fully accept your diagnosis for what it is and start to wholeheartedly accept yourself. Like I said, it took me years to get here; everyone will have a different time line, but you WILL get here. The more light that gets shed onto the unknown, the easier it is to accept and navigate through. Just take it one step at a time, there is no rush. If you need to stay a while on one step, that is okay – I will stand with you, we will get there. Just breathe, tomorrow is a new day and with every day, you are one step closer. Promise.


What Ultimately Helped You?

For me, it was the moment that I shared my experience with others, face-to-face, and gave them the confidence and positivity that I never received in the beginning of my treatment. I treated them in a way I wish I was treated and gave them a real life example of life continuing on. I was able to give them hope. It was in that moment I realized that I was not honest on how I personally felt, that I tried to ignore it as others have done when I tried to reach out, and that educating myself would only go so far. At that moment I made a promise to myself to be more accepting of my condition and use it help benefit others. Over time, I gained acceptance of myself.

Remember, acceptance does not mean you will not struggle. There is a lot that comes with Epilepsy/Seizure Disorders and yes, struggles will arise – but accepting those struggles is part of the journey. Accepting the good with the bad and always being honest about it is part of overall acceptance. And you will get there.


Feel free to share you journey to acceptance below and what helped you along the way