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.

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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.

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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.

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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.

Fear of Permanence

A fear that I did not know existed within me.  I do not like change too much either within my personal life, but permanence terrifies me. This fear for me rises from anxiety with the idea that good and pleasant things will fall through. It also rises from a fear that I will not be able to change something I do not enjoy – but instead, find a way to make it mediocre.

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Epilepsy is permanent. Have you ever imagined waking up one day, knowing you will never get better? Imagine being told that at 19, just a few months into being diagnosed with something completely out of left field. There is no magic pill to erase it, just to tolerate it. There is no guaranteed surgery or interventions. All you have is hope. To hope it gets better, to hope it becomes tolerable, and to hope it will not be your downfall. Coping with the permanence of Epilepsy is exhausting. For some, yes – they do “grow out” of it and able to live a normal life; very common for childhood diagnosis depending on the type. Some live completely seizure free with medication. Some do have success with surgery. Then there are some that may have less seizures, but they still come. And for the unfortunate few, nothing helps.

Even if we are not actively seizing, we still suffer. Epilepsy does not end when the seizure ends. For myself, head trauma is included every single time accompanied by blackouts and lost memories. With each seizure the time to recover is longer and lack of memory worsens. Then let us not forget the pills that lessen these events – they slow down cognition processes and understanding. They too affect memory storage. Then there are the mental health side; both condition and medicine induced. Sometimes we lose ourselves for the sake of tolerable life.

This is permanent for most of us. This is permanent for myself. There is no reversal; my memory will not come back. Memories lost will need to be triggered and constantly triggered to reform them. Without medication my learning processes may improve, but will equally be hindered by seizure frequency. Perhaps the constant seizures would have a worse effect. My family has been permanently affected and opportunities are forever missed. This is our reality.

  • “Epilepsy affects more people than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson’s combined – yet receives fewer federal dollars per patient than each of these” (source)
  • “The overall risk of dying for a person with epilepsy is 1.6 to 3 times higher than for the general population” (source)
  • “Epilepsy-related causes of death account for 40% of mortality in persons with epilepsy” (source)
  • “Neurologists say sudden unexpected death in epilepsy (SUDEP) is second to stroke as a cause of years of life lost because of a neurological disorder” (source)
  • Tonic-clonic seizures are an important proximate cause of SUDEP” (source)
  • SUDEP takes more lives annually in the United States than sudden infant death syndrome (SIDS).” (source)
  • Perspective wise: 47,055 people died in 2014 from drug overdoses of various types and 35,398 from motor vehicle accidents in the U.S. (source). Epilepsy takes 50,000 lives each year (source).

These are permanent facts we have to live with every single day. These facts have not changed and without support and awareness, will not see a change. All we can do is hope and confine in those close to us in our times of weakness.

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March 26th is Purple Day; a day in which we must raise awareness for Epilepsy. A day in which we must take a moment to realize that such a common phenomenon is underfunded and takes lives without notice. We deserve more than mediocracy.

Wear your purple with pride