People With Epilepsy Can Save Lives

Chris Rich was diagnosed with Epilepsy at just eight months old but that hasn’t stopped him from living a full life, one that is committed to saving the lives of others.

Chris first started helping others as a volunteer firefighter and EMT. He was mostly operating as support in the fire department, which means he wasn’t breaking down doors and carrying people out of burning buildings but he was there and ready when the other firefighters needed him. He kept engines running and on occasion helped to put out exterior flames. As an EMT he ran thousands of calls. He would perform simple tasks of helping the elderly get dressed, which I for one did not know was an EMT’s duty but I’m glad to know someone is out there looking out for the underdressed elderly. He would also field major calls like providing emergency help for an overturned ski bus, but majority of his calls fell somewhere in the middle, car accidents, injuries etc. In his position as a volunteer EMT he learned that he had a knack for working with people who were intoxicated or suffering from mental health issues and decided to dedicate his life to helping them.

Chris’s next step was to get his degree in Psychology. The process took him six years to complete. That’s two years longer than the average student takes but considering Chris was experiencing 400 to 500 seizures a year I would say he completed it in record time.

Photo by Egor Kamelev from Pexels

When reminiscing about his college experience Chris shared a wonderful story as a reminder that it’s ok for those of us with Epilepsy to laugh at ourselves from time to time, and to be grateful for the love and support we receive from people who care about us. It was spring in Rochester, New York, a time of year when melting snow and fresh rainfall would combine to create rich fields of slush and mud. While trudging through the slush to the dorms with his girlfriend Chris experienced a partial seizure and decided to sit smack dab in the middle of a mud puddle. Without thinking twice, his girlfriend sat beside him, the two of them in the heart of campus just sitting there in the mud. As passersby looked at Chris, his girlfriend would usher them on saying, “Move along.” Chris laughed when he shared this story with me, and I laughed when I heard it. So many of us have similar experiences to this, things that on the surface sound embarrassing but if we can laugh at ourselves they are empowering pieces of what make each and everyone of us strong and unique.

But I digress. Back to the life saving!

After college Chris got a job in a 15 bed locked in patient psych unit where he led groups and helped feed and care for the patients. In this position he performed a lot of crisis intervention, talking people down from tough places before things became physical. His co-workers would acknowledge when he didn’t feel well and on those days he would perform lower impact tasks like paperwork. Having just listened to a podcast that said as recently as the 1940s people with Epilepsy were being committed to psych wards, I find it incredibly empowering and inspiring that Chris chose to work in one. Rather than being committed to a psych unit, he committed himself to one and to helping the patients there who couldn’t help themselves.

Chris’s next step was working in the emergency room of a level one trauma center. It was a very fast paced environment where he would see an average of eight clients in twelve hours. Many of the people coming through the doors were homeless or suffered from chronic mental illness and it was his job to assess whether they needed immediate treatment or another course of action. Many peoples’ lives were literally in his hands in this position and he came to the aid of each and every one of them.

Chris found himself in a new position working for a non-profit mental health center during the height of the synthetic marijuana crisis. In this role he was still conducting assessments on patients but his job was a bit more dangerous. He worked by himself, seeing six to eight people a shift with half of the patients would become violent due to illness or withdrawn but Chris didn’t waiver. He stayed strong and helped as many people as he could in his role.

Today, Chris has turned in the crisis units and dangerous patients for a desk and data analysts. His work is a bit quieter but it is still committed to helping others. Chris is now the guy who makes sure that the government holds up on its end of the bargain when patients receive state funded treatment. He processes paperwork that helps to keep people from experiencing crippling medical bills. It may not sound flashy but if you have ever experienced or even stressed about having to experience a medical bill without insurance, you know just how vital his job is.

When I asked Chris if he felt comfortable with my titling this post “People With Epilepsy Can Save Lives” because of the work that he has done for people with trauma and substance abuse he humbly said “Yes.” stating that he knew that he had saved four lives by keeping people on the phone until the police were able to disarm them. I have a feeling that the number of lives he has saved through his service work goes well beyond that.

Having Epilepsy is a struggle. Some days it feels too hard for me to even save my own life. I can’t begin to put myself in the shoes of someone like Chris, a real hero who is fighting his Epilepsy battle while helping others fight their demons and saving their lives along the way. I am honored to have heard his story and be able to share it with all of you.

People With Epilepsy Can Go To Hogwarts

No, sadly I’m not here to announce JK Rowling’s addition of a new epileptic character to the Harry Potter Universe. I am however here to say that, post epilepsy diagnosis I found multiple ways to escape the harshness of this new reality into the magical realm of Hogwarts School of Witchcraft and Wizardry, and am here to share my stories so you can escape whenever you feel the need to as well.

As a person battling epilepsy, or any chronic illness, it’s important for us to take a break and escape the weight of reality from time to time, and to do so in a healthy manner. For me, I find that escape through the fictional world, full of endless possibilities that JK Rowling has created in her novels, which have expanded to films and full fledged amusement parks, where attendees can literally immerse themselves in her wizarding world.

I was a late bloomer to the Harry Potter phenomenon, picking up my first book shortly after the first film was released. To this day, whenever I am feeling particularly beaten up by and run down from an epileptic episode I still turn to the Harry Potter movies and books for escape because I find Harry’s perseverance encouraging, Lupin’s struggle with being a werewolf oddly relatable, Luna’s kind yet odd mind motivational and J.K. Rowling, the woman behind the creation of such a world incredibly inspiring. The books and movies allow for escape to a world without epilepsy, a world where persistence in the face of struggle and adversity leads to strength and triumph. So, JK if by some internet-blog-social-media-miracle you are one day reading this post. Thank you for providing that escape.

Now onto how you all can physically go to Hogwarts…

hogwarts_studio_tour

Since my epilepsy diagnosis in 2010, I have visited Hogwarts multiple times, not only in the books and movies but on its home turf of England as well as through the immersive experience of The Wizarding World of Harry Potter in Florida. Each trip provides a unique experience unlike the other but all have furnished a much needed sense of fantasy, escape, high level of happiness and reminder of the beauty of life. Things we need to experience from time to time in order to continue to tackle the daily epilepsy struggles, battles and blows it brings our way.

 

Universal Studios Harry Potter Studio Tour – London England

harry_potter_studio_tour_epilepsyAs mentioned in an earlier post, people with epilepsy can backpack across Europe, and while there, if you’re a Potter fan like myself you can make a pit stop in England to visit the Harry Potter Studio Tour where you can quite literally walk through the great hall and immerse yourself in the intricately detailed props, sets and costumes that brought the magic to life. If the thought of lugging a bag full of your belongings around does not sound like your cup of tea, there is always the option of traveling to England and spending a few nights in one of many wonderful hotels and inns. Flying can be scary when you have epilepsy but as long as it is okayed by your doctor and you travel with someone familiar with your condition I am here to tell you that flying is ok!

harry_potter_epilepsy_dumbledore_officeAs a Harry Potter fan, there is no greater feeling than walking through The Great Hall (where by the way you can get married… and yes, I’m starting to save up my pennies right now), or  standing in front of the entryway to Dumbledore’s office, or even circling the scale model replica of the school as the surrounding lights slowly change to showcase the grounds from dawn to dusk. This is also a great experience for any movie buff or person interested in working in the entertainment industry. As someone whose path took a severe turn with that first seizure, from a career in dance performance to having no direction, I personally found the visit to the studio to be inspiring as a reminder that although my condition may not allow me to be involved in performance the way I had originally intended I could still contribute to the arts and entertainment industry behind the scenes or possibly even on film someday. So, if your path feels shorted or you fear for your or your loved one’s future, remember that there are options, alternative routes and ways to move forward in a chosen field with or without epilepsy.

 

The Wizarding World of Harry Potter – Orlando, FL

epilepsy_harry_potter_universal_studiosThe Wizarding World of Harry Potter parks provide a fully immersive experience, starting with a hidden entry to Diagon Alley, where you can get fitted for a wand at Ollivander’s, or peruse the magical gag gifts at Weasley’s Wizard Wheeseys. You can even survive a thrilling escape from Gringotts, (epilepsy permitting). If lights or sounds are one of your triggers though, I recommend skipping the ride but there is still plenty for you to enjoy, like magic musical and puppetry performances, interactive spots where you can cast spells with your wand  and if you dare, a journey down Knockturn Alley. Just like in the books, you can take the Hogwarts Express from Kings Cross station to Hogsmeade. The train ride, lasts 3 – 5 minutes. I will be honest, oddly enough it was not the high adrenaline, 3D rollercoaster rides of the park that worried me about my condition because while I do not know my triggers, testing has taught me that lights are not one of them. However while sitting on the train for the first time I found myself in my own head and beginning to feel anxious. It is a very low key and enjoyable ride but because the pace allowed for it, I found myself with time to worry about having an aura or seizure. Luckily I had loved ones with me familiar with my condition and they were able to keep me calm and reassured during the brief journey. There are also park staff members onboard the entire time so if anything were to happen they would quickly and easily be able to help. I include this info not to make you afraid to ride but to show that, even in the midst of escape, the seizure fear can still creep up. With quiet support the anxiety will pass. I was able to ride the train three or more times with no issues because my support system helped me tackle the fear the first ride.

Once off the Hoepilepsy_harry_potter_hogsmeadegwarts Express you enter Hogsmeade, with a beautiful, near-life-size rendition of the Hogwarts castle hovering behind the village. There is another immersive, roller coaster style ride located in the school but again, if you worry the ride may trigger seizures there is plenty more to enjoy in the village itself. If you have not been on a roller coaster since your diagnosis, you can dip your toes in the water on Flight of The Hippogriff, a very low impact and incredibly brief coaster ride. If you know that lights are not a trigger and this coaster goes well for you maybe then you can tackle the rides in Hogwarts and Gringotts. Again though, if you are not able to ride the rides, you can still escape into the entrancing beauty of Hogsmeade Village. You can grab a bite to eat or a Butterbeer at The Hogshead and score some sweets from Honeydukes. Most importantly, rides or no rides, food, wands, Butterbeers, whatever. The most magical thing about visiting the parks is being surrounded by people with a shared interest, immersed in a place that provides a magical and imaginative escape from whatever stressor life has thrown our way be it epilepsy or other.

Now I presume most who have read this far into the post are fellow Harry Potter fans and I hope what I have written has inspired you to pick up one of the books, put on one of the movies or begin planning your magical journey. If you are not a fan of the Potter world, take a moment to think about what it is you are passionate about, the tools you use to escape from time to time. Maybe it’s woodworking, maybe it’s a video game, maybe it’s watching foreign films, maybe it’s closing your eyes and simply envisioning yourself somewhere else (aka meditation). Whatever it is, isn’t it nice to remember that you have this escape and that there are other people out there, some with epilepsy, some without, who all share this commonality?

Now every interest may not have such elaborate places as The Wizarding World of Harry Potter where its fans can come together but I bet if you do some research you can find a place where people meet online or maybe even physically to talk about your shared interest. If you don’t find a place to interact with these like-minded people, I encourage you to start one. It takes just one action to start a movement!

epilepsy_dumbledore_quote

 

 

People With Epilepsy Can Vote

This past weekend I got to participate in one of our greatest rights as American citizens. I got to vote. Not only did I get to vote but I got to participate in the largest caucus my state has ever seen. My city alone saw a turn out of upwards of 5000 people. The line was so long and crowd so immense that they decided on the spot to upgrade from caucus to primary.

To get a sheer sense of the size, you have to check out this video from Portland based photographer/videographer Dylan Verner.

It took 4 minutes to DRIVE the line for this caucus in Portland, Maine. This wasn’t a Bernie Sanders rally. It wasn’t a concert. It was a caucus. When voter turn out is high, we win. Every time.Let’s get high voter turn out in Michigan: berniesanders.com/callThanks Portland Pinhole for this incredible video

Posted by The People For Bernie Sanders 2016 on Sunday, March 6, 2016

I’m in that line, about halfway through to be specific and I stood in that line for close to four hours just so I could cast my vote. Now at first glance this may not seem like such an astounding feat but for someone with epilepsy it’s pretty darn impressive. The three days prior to the caucus, for whatever reason, my auras (aka suppressed seizures, aka weird bouts of hearing background noise and being confused) were through the roof. Now if you’re someone like me who has experienced seizures and auras you know first hand just how draining they can be physically and emotionally. For those of you unfamiliar with the feeling, imagine sprinting up a snow and slush covered hill, at an 80 degree incline, to reach the love of your life for a comforting warm embrace only to have the person ripped away from you at the last second and find yourself transplanted to the base of a new, unfamiliar mountain… now multiply that feeling by twenty. That’s roughly about how draining it feels. You probably wouldn’t feel much up for standing in a crowd of people after that would you? To top it off, not knowing what ones triggers are means that things like extreme cold, standing for long periods of time, lack of food and crowds could also lead to epileptic episodes. Add that wonderful bundle of fear on top of the exhaustion. Needless to say caucus morning I was in no mood to take the risk. However, through the support of my amazing life partner and some incredibly encouraging friends I went for it, and I am incredibly glad that I did. Not only did I get to spend a full day with some of the kindest, most supportive, like minded individuals I have ever met, I got to participate in a historic event. I got to have my voice heard for the candidate I think is the best choice to represent our country at this moment in time, and I got to share the experience with loved ones. By the end of the day the gloom of the past days’ auras had lifted and I found myself beaming with joy and pride from the support I received from others and the support I showed for my country.

Regardless of what your political party may be, I urge you, do not let your epilepsy get in the way of casting your vote. If you really don’t feel up for going to your local polls or caucus location there are always absentee ballots, so you can vote from wherever you feel most comfortable and safe. Each of our voices matter when it comes to shaping the future we want to see for our country. As people with disabilities that make it difficult for us to live (quote un-quote) normal lives, difficulties that may prevent us from working the typical 9-5 job and receiving necessary benefits like health insurance, our voices are so vitally important and no one will hear us unless we speak up!

 

Stay strong, stay grounded, stay positive and stay involved!

Love,
The Epileptic Explorer