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…

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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!

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People With Epilepsy Can Backpack Across Europe

As I sit here in the hospital, after having just received some discerning news regarding the results of the in-patient monitoring EEG tests I stayed up all night, forcing myself to have a seizure for, I felt this was the proper moment to reflect back on one of the most major accomplishments I have achieved in my life, not only as a person with epilepsy but in my life as a whole, and that moment was when I fulfilled a lifelong dream of backpacking across Europe (epilepsy and all).

epilepsy_europe_travel Backpacking was always something I over romanticized growing up. I thought somehow, someway I would hop on a plane completely alone with little money to my name and navigate my way through a foreign place, perhaps falling in love along the way and seeing where that journey led me. Now, reality is 99.9 times out of 100 never quite the romanticized world we hoped it would be and this trip was just that. It was not perfect but it was still a wonderful adventure, filled with exciting, eye-opening and peaceful moments of growth and self discovery. It was just the way in which it came about and unfolded along the way that differed from the story I had written in my head but I am happy it came about at all because, once you hear that Epilepsy diagnosis it’s easy to feel like life is over and the dreams you had before hearing it are done.

epilepsy_backpackerBack to how the trip differed from the romanticized version in my head. Let’s look at the traveling alone part. I would not recommend as someone with Epilepsy that you venture on a journey like this completely alone. A travel companion is highly recommended, not only to help and provide comfort if you have an episode but to share in the beauty, the excitement and the journey with you. Luckily the right partner-in-adventure is out there for us all and I found mine in my partner Andy (click here to read more about Andy’s awesomeness if you would like). When I told him my plans to backpack across Europe, to stay in hostels and work on organic farms, he was ready and raring to go, helping to scout farms and hostels, and securing train tickets to guide us through breathtaking views of the Alps on our way to Italy. His energy fueled mine and I found myself happier in the planning process than I ever could have imagined I would be.

Also, traveling with no money is never a good idea, no matter if you are an epileptic explorer, or are healthy as a horse. It is always a good idea to have some cushion money. So, rather than pick up and leave on a whim, Andy and I spent months saving up for the trip. We did keep one element of romantic adventure in play by quitting our jobs prior to departure but we were sure to have saved up enough to survive for a period of time once we returned. We did this in order to be fully present as we fulfilled this lifelong dream, and it worked. We had some eye-opening, life changing moments that helped us grow as individuals and brought us even closer together as a couple. I would not change anything about our adventure for the world (yes even the epilepsy part).

 

The Start

Europe2013_4
All set and ready to go on our two month adventure, we patiently awaited our plane from Boston’s Logan Airport excited and anticipatory of what was to come. Two months of life experiences includes too many stories to give justice to in just one blog post. See this write up as an overview of what is possible (epilepsy and all) but keep any eye out for further posts about individual adventures we experienced at various legs of our journey.

WE MADE IT!
epilepsy_ireland

After a long journey with a travel mishap or two, we finally landed in our first destination, Ireland, where we planned to work on remote farms, visit a dear old friend in Dublin, and take in the beautiful sites and rich history of a culture very close to me. As someone from a long line of large, Irish families. I always knew I wanted to visit the country to learn more about my roots.

While in the lush, green and grey countryside we were fortunate to stay with some incredibly warm, welcoming and giving people on their farms through the WWOOF program (shout out to WWOOF for allowing volunteers with disabilities to be a part of your fantastic organization). We took in trad music, kissed the Blarney stone, saw where Guinness was made andepilepsy_ireland_collage became certified Guinness pourers (keep an eye out for a future post titled People With Epilepsy Can Become Certified Guinness Pourers for more on that one), visited the Dublin Zoo, and took in a rendition of Priscilla Queen of The Dessert that was just SO fabulous it drove me to have a simple complex partial seizure, which Andy helped me through. Our WWOOF hosts were also incredibly supportive of my condition, one even went so far to ask for details about it in regards to my menstrual cycle so he could see if it linked with the lunar cycle as well (fun fact… it does). The experience taught me a lot and I urge you; don’t be afraid to be open with people about your condition. At the root most people want to help and will do whatever they can to show support, including opening your eyes to ideas for triggers and treatments that you may never have thought of before.

Across The Pond

Europe2013_487From Ireland we took a fairy to England, where we spent two days in London, seeing Buckingham Palace, The London Eye and Pickadilly Circus. The highlight for both of  us was of course The Harry Potter Studio Tour. Harry Potter fans can feel the excitement on this one by reading my People With Epilepsy Can Go To Hogwarts post (coming soon.) London is a really lovely place and two days is certainly too little to see it all. Hopefully I will get back there one day but visiting London alone was not what this trip was about. This was about the backpacking and proving that Epilepsy and all, I still had what it takes to backpack from England to Italy, so Andy and I packed up our things and did just that. We took a sleeper train through the Alps. One thing to note about sleeper trains. They are not exactly the greatest for sleeping. It probably didn’t help that my body was covered in bedbug bites from one of the many hostels we had stayed in prior to boarding the train and that somehow I had popped a blood vessel in my eye but whatever the cause may be, by the time we landed in our final location of Venice, I needed to spend the first romantic night cooped up in our (much nicer) hostel room with a stomach bug most likely caused by dehydration and lack of sleep. Miraculously no seizures though! Fortunately I was recovered in just one day and was ready and able to take Italy by storm. Keep an eye out for a future post about all the amazing things people with Epilepsy can do (and eat) in Italia but for now I’ll preview with the list below.

  • epilepsy_italy_travelLeaning Tower of Piza
  • Cinque Terre
  • Orvietto
  • Wine
  • Wine
  • Wine
  • Basillicas
  • Open Air Markets
  • Art

Looking forward to sharing more about this life changing experience with all of you explorers out there and how it affected me both as a person AND as a person with epilepsy in future posts because it seriously affected both in ways I could have never imagined prior to doing it.

What is one thing you have always wanted to do but maybe have been holding back from? Don’t let your epilepsy get in the way of achieving your dreams. You are a warrior. Strong and capable. You can do anything you set your heart and mind to!

Keep feeding the wanderlust!

Love,
The Epileptic Explorer

People With Epilepsy Can Visit New Places And Teach Yoga

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When the words “Epilepsy diagnosis” are first heard it is easy to feel like your life, or the life of the loved one you care for who has been recently diagnosed is over. I am here to tell you, from experience that it is not.

The year I was diagnosed with epilepsy I thought my life was over, quite literally. Prior to suffering my first Grand Mal seizure I had just graduated with a degree in Dance & Performance Studies, and had plans to go on auditions in hopes of joining a touring company that would allow me to see the world while doing what I loved. Unfortunately specialists and neurologists urged me not to continue on this path. The fear was that by performing in group pieces I could potentially be endangering myself and others. It felt like the rug was pulled out from underneath me. This was my plan. Movement was my life. I was lost and sinking into a deep bout of depression. Post graduation, pre epilepsy I had begun taking regular yoga classes primarily to keep my body fit and flexible for anticipated auditions. When the epilepsy started, yoga became so much more to me than just a form of exercise. It became my escape, my way of keeping grounded. The yoga studio was the place where I felt a connection to my former, dancer self and I would leave each class feeling calm, warm and centered. I realized I wanted to help others feel the same way and that yoga could become my new path to pursuing a movement-centered career. I began saving my paychecks and researching yoga certification programs. It was then that I found Marianne Wells Yoga School and decided to enroll in her program, which would lead me to Costa Rica to receive my 200 hour RYT certification.

The day came and it was time for me to head off on my first post-epilepsy diagnosis solo journey. Here I was with a recent diagnosis of a condition I knew so little about, and I was about to board a plane, alone, headed to a completely foreign country. What was I thinking!? Looking back on it the answer to that question is quite easy. I was thinking, “Live.”

epilepsy_costa_rica_airport

The plane ride went off without a hitch and before I knew it we were landing in warm, sunny Costa Rica. It was March at the time and March in New England is notoriously grey and gloomy, so the green trees and blue sky were a warm and welcoming sight. For the first time since my diagnosis I was not thinking about my epilepsy. I was in a new place, where no one knew of my condition. I was able to go from being Liz the epilepsy patient to just Liz again. It was an incredibly freeing feeling.

Myself and several other women from the yoga certification program were picked up at the airport and brought to Samasati Nature Retreat where we would begin our training. The grounds were beautiful, with lush greenery everywhere, quaint cabanas for us to sleep in each night with our roommates, walking trails to waterfalls and a wonderland-esque level of natural beauty. It was like being in a dream, or like waking up from the epilepsy nightmare I had been living in the past year.

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While at the training I was woken up at dawn by mischievous, spirited, howling monkeys, I went on a solo walking meditation each morning, I learned the ins and outs of Iyengar style yoga instruction and I felt welcomed and safe.

epilepsy_yoga_1I was able to open up to the women in my program about my epilepsy and am glad that I did. I learned so much from each of them. MaryAnne herself took me aside one day and taught me about how important focusing on the root chakra is for individuals with neurological conditions like mine. Another woman who was a nurse taught me about the healing powers that different sound waves harness, and my roommates supported me through two auras that happened while on the trip. Up until then I had been ashamed of my epilepsy, hiding it from others because I was afraid of judgment and did not want to burden anyone with worries about me or my health. These women gave me the confidence to embrace my condition and acknowledge that it is simply a part of me, a part that makes me unique and strong.

Epilepsy can easily make you feel like your life is over, that you cannot accomplish your dreams. But don’t let it do that to you. Epilepsy is not the end of the road but merelyepilepsy_yoga_smile a detour. If you think you have hit a road block, get creative, maybe there is a new way for you to get around it in order to live the life you’ve envisioned. Feeling stuck or lost and want to talk to someone who has been through it? Email me. I know how much the support and insight from my fellow yogis meant to me when I was in such a dark place with my diagnosis. I am more than happy to provide help to any of you who feel you need it.

In the meantime, stay strong, stay positive, stay grounded and keep smiling!