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 Be Business Owners

It’s an all too familiar scene for those of us with epilepsy; you begin to feel off, something doesn’t seem quite right, you lose consciousness and before you know it you are coming too with several people around you and a shooting headache with no memory of what just happened.

That is how KK Gardening owner and home-schooling mother of two Kirsty explained the experience of her first seizure to me. Kirsty’s first seizure occurred in 2015. Since then, she began homeschooling her 10 and 8 year old daughters, attended college to become a horticulturist and opened her own gardening business.

Kirsty acknowledges that the road has not been an easy one. Six weeks into her first attempt at college classes she suffered her second seizure and received her formal Epilepsy diagnosis, forcing her to have her license taken away and to put her coursework on hold while she tried out medications that made her feel suicidal, and she grappled with low energy and memory loss. To top it all off, she experienced the loss of her family dog. A veritable “When it rains it pours” type of situation. Many people might throw in the towel in this situation but not Kirsty, she remained positive and moving forward.

“I suffer from quite a few symptoms but have learned to try and keep my chin up even at the most toughest of times.”

 

 

After her second seizure in 2015, Kirsty and Jason, her husband of 12 years made the decision to home educate her daughters. With only one driver’s license between them they were no longer able to provide reliable transportation to and from school and homeschooling was meant to be a temporary solution until the transportation situation was resolved. However, the girls took to homeschooling. Their performance and possibility increased during this trial period. It was then that Kirsty officially became a home-school mom.

Kirsty dedicated 2016 to her children, to building back her self-esteem and to adjusting her life to work with the reduced energy levels and memory problems epilepsy caused her. Near the end of the year, with renewed self-esteem and encouragement from her family Kirsty returned to college part time. She took things slowly, acknowledging her body and mind’s needs, and passed her courses with flying colors.

Today, in addition to educating her daughters, Kirsty owns and operates KK Gardening. When she is not homeschooling, she is outside helping people beautify their homes and gardens. She still struggles with short term memory loss, low energy levels, and self-esteem issues as so many of us do but she has learned to work with it all and is happy. She pushes herself each day to maintain a rich, fulfilling life and is an inspiration to so many others. Kirsty is an example of why we should never give up. As hard as life gets when you battle with Epilepsy, if you set your mind to something, keep your chin up, and make adjustments based on your body and mind’s needs like Kirsty did you too can achieve your dreams.

People With Epilepsy Can Be Superheroes

We all know that people with Epilepsy, and those who support them are superheroes every single day. But one epileptic explorer out there has taken things to the next level by creating and becoming the crime fighting, epilepsy battling superhero ToteMan.

ToteMan, a superhero who fights crime with his signature flaming screwdriver goes beyond the call of duty by not only battling villains but by spreading the word about epilepsy awareness, helping people with seizures, and informing others of what to do when they see someone who may be suffering from an epileptic episode. ToteMan was created by John McLaren, who suffers from epilepsy, in 2002 as a way to explain his own condition to his then 7 year old son. Although the original short story was written specifically for John’s son it quickly began to impact others’ lives. As he explained to me, “The person that left the biggest impression was a young girl in college who read the story.” She had epilepsy herself, and upon reading John’s initial short story starring ToteMan in a class they took together, she told him that it moved her to tears and made her realize that she was not alone in her battle with epilepsy. It was that moment that made McLaren realize just how important ToteMan’s message was, and how vast of an audience he could reach with the story. This young woman’s response inspired John to work with a comic artist to conceptualize the look of ToteMan and create his first comic, fittingly titled “You Are Not Alone.”

I won’t sully you with any spoilers. The comic, which is free to download, print and share (actions that are highly encouraged by John by the way) is available at ToteMansworld.com. The site also includes video of ToteMan aiding a child who is having a seizure and additional illustrated comics starring other characters from the ToteMan world and their differing experiences with epilepsy.

John’s sons think it is very cool to have an epileptic superhero for a father. One son has even followed in his footsteps by creating his own character, and another dons the much-loved ToteMan costume from time to time at Epilepsy Foundation events and awareness walks. ToteMan has led John to become a spokesman for epilepsy himself. He has been invited to be a guest at the 2010 Epilepsy Walk in Washington D.C. and a speaker at the Kids Speak Up event.

John has big things planned for ToteMan. “I am working on a few origin stories for characters in the ToteMan Universe that promote positive messages like friendship, individuality, and global awareness.” He is searching for a way to produce more hard copies of the comic to give out for free in order to continue to spread ToteMan’s message about epilepsy safety and inclusiveness. He is even seeking funding for a cartoon based off of the comics. I can say with great certainty, that this epileptic explorer would love to see that show happen.

We should all take a page from John and the world he’s created through ToteMan. He is truly an inspiration, a reminder that we are all superheroes in our own ways. We are made stronger by our epilepsy, not weaker, and we are capable of an immeasurable amount amazing things.

If you would like to learn more about ToteMan and ways you can support the mission to spread epilepsy awareness in this amazingly unique way just click here and shoot John a message.

You are all superheroes.

– The Epileptic Explorer

People With Epilepsy Can Stand Up For Their Rights

If you’re reading this and suffer or have suffered from seizures, or you are the family, friend of caregiver of someone with epilepsy; chances are you know that in late 2017 Jeff Sessions repealed Obama-era sanctions and declared marijuana a schedule one drug, on par with LSD and heroin at the Federal level. You probably also know that 12-year-old Alexis Bortell, who uses cannabis oil to control her seizures, and co-wrote a book about it (thus surpassing this bloggers goals, and making someone who is one third my age my idol) is part of a group that is currently suing Sessions.

What you may not know however, is that due to Sessions actions Alexis, who like so many of us with epilepsy simply wants to live some semblance of a normal life, now cannot visit national parks, fulfill every child’s dream of going to Disney World, or even visit her own grandparents in Texas. The restrictions set in place by Sessions’ move prevent her from visiting Federal property, and put her and her parents both at risk simply by traveling out of state. She is more-or-less confined to Colorado, the state her family moved to about three years ago so she could potentially avoid brain surgery by trying cannabis treatment for her epilepsy.

Alexis in 2014, prior to CBD treatment.      Source: Facebook

As is the case for so many of us with epilepsy (this blogger included), Alexis’s seizures could not be controlled by traditional medicine. The CBD oil, which Alexis takes twice daily, and carries on her in a spray form for use in emergency situations has kept her seizure free for nearly three years.

The treatment works for her, the only trouble is, when traveling across state lines her necessary medication may be viewed as an illegal substance, and her parents could lose custody of her as a result. All she wants is a relatively normal childhood. Battling epilepsy scary enough without fear of losing her parents on top of it.

This is just one of the reasons why Alexis, along with 6-year-old Jagger Cote, former NFL lineman Marvin Washington, and army veteran Jose Bellen filed suit against Sessions in 2017. To the best of my knowledge, results of the suit have yet to be announced. However, on Thursday January 4th, the Department of Justice issued a memo re-enforcing Sessions’ initial decision to criminalize marijuana at the Federal level.

The ending of this story (as it currently exists) may sound a bit dispiriting. That is not what this blog is about though. It is about optimism and action. Right now, we can take action by being like Alexis, and acting as advocates. We can educate ourselves on the medical benefits of cannabis, and share the stories of people like Alexis, and so many others who rely on this natural substance for a varitey of medicinal purposes. If, with research, you find you are not in favor of medical marijuana, be an advocate for epilepsy in general. We need to stand together, educate others, stand up for our rights, and the rights of so many others who fight this epilepsy battle each and every day.

If you want to take immediate action in regards to the Federal stance on medical marijuana, you can contact the Department of Justice. Simply go here, and send a digital form, physical letter, or make a call. The more the department knows about how this bill is affecting the public, the better the chances of them knowing the negative affects it has on the American people.

Stay strong warriors,
The Epileptic Explorer

*Editor’s note: The intention of Epileptic Explorer as a blog was never to become political. As someone with epilepsy uncontrolled by traditional medication, who lives in a place with limited access to medical cannabis, and is facing the surgery decision herself, this issue in particular speaks directly to me. My hope is for people to have access to all of the medical options available to them, so they can make their own, informed decisions on how to best treat their conditions in order to live their best lives.

People with Epilepsy Can Have Pets

This is Winnie…

I rescued Winne….

But really, Winnie rescued me.


Pets can be a great comfort when processing epilepsy; be it by curling up with you when you are postictal, by providing unconditional love when you most need it, or by giving you something wonderful to care for that is bigger than yourself, so you can focus your energy somewhere other than fearing a seizure that may or may not occur.

In some instances, a pet can even inform you when that seizure may happen.
Seizure alert dogs can be a great asset to people who suffer uncontrolled seizures. Although the costs associated with training an alert dog can be high and the wait for a pre-trained dog long, for some with uncontrolled epilepsy, the cost and wait for an alert dog can be well worth it for the service they provide. For those of us without the need for alert services, a more traditional furry friend comes with many benefits as well.

A study published by Science Direct stated that benefits of dog ownership include companionship and belief that dogs reduce stress and therefore seizures.

Speaking from experience, since adopting my pup in March of 2017, Winnie has been my saving grace. I even think she’s helped reduce my number of epileptic episodes. Although she cannot sense when my seizures are coming, I can. Often times, when I sense an impending aura and start to feel anxious, I am able to stop it in its tracks by distracting my brain and focusing on something else. Winnie is quite possibly the world’s greatest distraction!

It’s hard to stay anxious when this loveable face is looking up at you.
epilepsy rescue dog
Adopting a pet, particularly a young dog may not be the ideal situation for many people who battle with epilepsy. It can be hard to know just how much training and attention the dog will need, or what their temperament will be due to lack of information about their histories. I will be honest, for as much pleasure and comfort Winnie has brought into my life, she has come with her fair amount of stress too. I only recommend adopting if your seizures are well under control. If you are looking more for a pet to comfort you than a pet for you to comfort, they are out there. Studies have shown that even something as simple as a fish can reduce stress, and elevate moods. With a little research and self reflection, you can find the animal companion that is right for you in the chapter of your epilepsy novel you are currently in.

Do you have a pet who provides you with the love and support needed to be the amazing epilepsy warrior that you are?
I want to see them!
Comment below with a photo of your furry, fishy or scaly friend for a chance for you both to be featured on the blog!

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 Walk To Build Awareness

This past week this blog celebrated its one year anniversary. To commemorate the milestone, this writer/Epilepsy warrior joined the Epilepsy Foundation of New England in their walk to build funds and awareness for the fight against this relatively unseen illness.

epliepsy_foundation_walk_2016The day began as we all gathered at a local high school before departing on our two mile walk. It was an incredibly powerful and moving experience as I and my team of seven advocates became surrounded by what felt like hundreds of other warriors, survivors and supporters.

Fueled by sustenance from generous food sponsors, we set out on our journey to spread awareness. On the walk I was able to share my Epilepsy story with others and to gain inspiration and strength from hearing the stories of other walkers. The supportive energy from all of these people coming together blanketed in a sea of purple shirts was immeasurable. Seeing families and friends supporting each other, dogs donning Epilepsy’s signature color and kids running side by side all to support one another was so positively uplifting that I was almost moved to tears. I couldn’t possibly imagine a better way to have celebrated the blog’s birthday.

We won’t be able to break down the stigmas surrounding Epilepsy and help find its cure without taking action and raising awareness. Walking for Epilepsy is just one way to take a stand and show your support. Different locations host walks and fundraising events at different times. I recommend locating your local branch of the Epilepsy Foundation and contacting them for more information on events in your area. In the meantime, The National Epilepsy Foundation has fantastic resources to learn how you can help and become an advocate for Epilepsy. Click here to learn some of ways you can get involved.

 

Walk On!
The Epileptic Explorer

Top Places For People With Epilepsy To Live

Epileptic Explorer Counts Down
The Top Places To Live If You Have Epilepsy

Disclaimer: I am no expert on which cities have the highest level of epilepsy resources per capita or which states the nation’s most qualified neurologists call home but as someone living with epilepsy I do find this list to be quiet helpful.

Number 2: Portland Maine

portland_maine_skyline
 

Number 1: Wherever They Want!

road-red-street-sign-large

This past month I have been slowly moving into a new apartment, just about five blocks away from my current apartment in the city of Portland, Maine and it got me thinking about why I choose to live in Portland at all. Maybe you have heard of the city. It’s been on heck of a lot of top ten, twenty, thirty etc. lists lately and today its made its way onto mine.

Portland has made it onto this exclusive top 2 list not because it has some phenomenal amount of resources for people with epilepsy (it doesn’t) or because it has fantastic public transit for those of us who can’t drive (it doesn’t) but because to me it’s home. Although its number of neurologists is limited it’s restaurants are vast (and I love to eat) and what it lacks in epilepsy support groups it makes up for in the calm and therapeutic sounds of ocean waves (my favorite sound to relax to). Plus, Boston has plenty of resources and it’s just two hours away. The purpose of this post isn’t to persuade you to move to Portland however. That’s why the city didn’t take the number one spot. It’s to let you know that even with epilepsy you can live wherever you want!

Take a look at where you currently live. Is it a place that makes you happy? If not, think about what’s holding you back from changing your living situation. Is it in any way tied to your epilepsy? If so, remember this. Epilepsy can keep us from doing some things but it can’t keep us from living where we want. I’ll say it again. You’re not stuck. Make a list of the top five things you want and need from a living situation. If your current location doesn’t provide majority of those things, do some research and find a place that does, then move there, or maybe try some places out to see what fits. Don’t hold back.

If you love where you currently live. I would love to know about it! Please share your story with your fellow epilepsy warriors in the comments below.

Don’t let epilepsy hold you back from living the life you deserve.
-The Epileptic Explorer

 

 

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