Epilepsy & Travel

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Ever since I visited New York at the age of seventeen I was bitten by the travelling bug.   It was an experience that left me hungry for discovery and exploration.  England in comparison seemed small and the fog began to lift as to why I never had a feeling of belonging. It opened the door to a realization that there was a huge world and I needed to unearth as much of it as I could, immediately.

In the last twenty years I’ve worked in Wisconsin, lived and volunteered in Pennsylvania, am now settled in Seattle, but my nomadic ways are not just limited to the US.  Canada, Europe, Australia and French Polynesia are more geographical notches on my belt.  It’s with a sense of pride that I write that list as there has always been significant preparation both mental and physical.

My seizures and I travel as a team, I expect to have them and they accompany me with an unpredictable predictability.

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It was always a running family joke that whenever I took off on my escapades the majority of my trusty blue rucksack, (pictured), would be filled with box upon box of Epilim.  I must have taken a good fifteen to twenty boxes to see me through a year so clothes were certainly further down on the list of priorities.  My philosophy has always been, “If I can buy it abroad it’s not a necessity”.

Both past and present, when it comes to airport security I have always been amazed that I haven’t been hauled off and accused of being a drug lord with the amount of medication I have stashed away in my luggage.  No staff member has ever batted an eyelid or questioned my motives.  I was always prepared with a doctor’s letter to support my cause but have never needed it.

Stubbornness, whilst it could be perceived as a flaw, in my case was pretty much the characteristic which enabled me to live the way someone who didn’t have epilepsy would.  I was determined I would make my travel dreams a reality.  Despite the numerous G.P appointments consisting of my begging the doctor to provide a year’s supply of drugs, I was normally successful – even if it did make me a ‘criminal’.  I say this because the law changed and doctors became able only to issue one month of medication without arduous complications.  In one instance post law change, I was issued the necessary amount but asked not to tell anyone as it compromised the medical code of ethics and potentially put the doctor’s job in jeopardy.

The majority of my traveling was done alone and as I visited different countries, met people and acquainted myself with new cultures, it never proved too problematic.  I’d inform the flight attendants of my epilepsy, sit myself on an aisle seat just in case, and that would be the flight preparation.  With regards location, my choice of destination was somewhat limited.  Research was vital and the questions contributing to my decision were as follows:

  1. Is English spoken and understood well?
  2. Transport – is it available and reliable so if something was to happen I could easily get to hospital?
  3. What are the hospitals like? Are they well equipped to be able to deal with seizures?

For those that are seizure free, these are considerations that are probably not thought about from a safety point of view. If I’m honest, at times I do feel twinges of envy for those who just decide where they want to go, plan and conquer; life without epilepsy would have certainly altered my opportunities.  I simply travelled to places that instilled a sense of security and confidence and that meant English speaking countries.

Since meeting my husband, we learned we make fantastic travel partners.  I now have that extra confidence boost because he always has my back which expands my options for destinations and activities.  A perfect example of this is snorkeling.  I would never have snorkeled alone for fear of seizures in the water.  When I first tried it, I made sure my hubby stuck to me like glue as I was terrified, but we had the opportunity to go in Maui and on numerous occasions as I made my way back to shore I saw him scanning the horizon looking to check where I was in the water so he knew I was okay.  He didn’t always see me witnessing this act of love from further down the beach, but it made me feel safe, secure, loved and understood.

Fear has and continues to remain a silent integral part of everyday living.  With that reality, whether I’m at home or on the move it doesn’t change anything; therefore, out of choice I’d much rather be fearful lying in a paradise with the opportunity to snorkel alongside sea turtles and exotic fish than miss out and live with a plethora of “what if’s?”.

http://www.associazioneepilessia.it/

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