“I had no idea how difficult it was for you, I feel so bad like I could have taken you to more places.”
“Don’t be silly” I said, “You weren’t to know, my life is to be lived a certain way because of the limitations I have. I don’t expect everyone to drop their lives so they can chauffeur me around to wherever it is I want to go.”
“No, but I can’t believe you’ve never been out here to hike, it’s so beautiful, you’ve been here nearly three years and I never thought to offer.”
“Honestly, it’s absolutely fine; we’re here now aren’t we? Better now than never!”
This is a conversation which took place between me and a very good friend recently when we went for a fall hike. As we drove to our hiking destination I appreciated it was the first time I had been outside Central Seattle as the leaves turned with the season’s transition and it was truly stunning.
Having been able to maintain my independence over the years despite my seizures, there were/are always adjustments that need to be made in one area or another.
As many of you know and will have experienced yourselves, I have never been able to drive due to my seizures. I’ve never been seizure free since the age of eleven – I am now thirty six. Therefore, through my many years of moves and relocations (I think I’m up to thirty six moves now!), I have always had to ensure my location is close to a town or city. This is so I can be within walking distance to buy food, go shopping, have a local pharmacy for my meds, a doctor for my prescriptions and to remain close to buses and trains to enable me to maintain my independence.
The only place I have lived that disabled that ability was when I was living and volunteering at the Camphill Community in Kimberton Hills. While I certainly don’t regret the life experience as I went back for a second year, it really was a wake-up call as to how much thought needs to actually go into where is suitable for me to live. I’m just fortunate that I’m naturally a city girl!
The community was located in a fairly remote area in the stunning countryside of Pennsylvania and the road that ran alongside it would lead to a little town which was an approximate twenty minute drive away. There was no pathway, so to a degree one would be dicing with death to make the twenty minute walk to Wholefoods which I occasionally did, the only shop for a fair distance.
It was challenging for me to rely on asking neighbors in the community to take me somewhere at a specific time as it wasn’t always convenient for them. I felt as though I was a burden and an inconvenience. Days off were a little easier as there would normally be a group of us exploring somewhere together anyway.
It was after that little chapter in my life when the realization dawned that it wasn’t practical for me to live in a place that didn’t have a transport system allowing me to discover and investigate at my own pace. I was grateful to all the people who had assisted me but I definitely felt a significant loss of independence. I was a grown adult after all; I should be able to achieve everything that everyone else can, right?! No is the answer. Without victimizing myself, it is a reality that I am fundamentally different because of the epilepsy, not in a negative way but such that it makes me accept that I need to make adjustments in order to live alongside this life-long companion as peacefully as possible.
As the years have gone on the wisdom gained, as I live through a myriad of experiences, has brought me to the point of understanding that sometimes I do need a little help from my friends and that it’s okay.
So as my friend and I embarked on an invigorating hike with spectacular views, we agreed that I would let her drive me around in future and that I had to let her show her support and care for me in a way that was advantageous to me. After all, if she didn’t, we wouldn’t be able to explore the state in which we live together. And it was at that point, I was reminded again what incredibly special and supportive friends I have, individuals who are willing to go the extra mile so I can live an even fuller life than I already do now.