My love of words (and life) continues…
Words are the basis to connect all of us together through communication. Words can evoke the most idyllic feelings yet they can be our complete undoing, bringing us devastatingly to our knees because of their destructive intent.
I’ve loved words ever since I was a child. They to me were an escape and a comfort rather than a source of unhappiness. Yes, they were a source of rejection at times, (as for us all) but there was more love in them than anything else. My Enid Blyton books were my most precious; they created a world that took me from reality into one of eating marmite sandwiches, fruit cake and drinking lemonade.
I’ve always found the process of brain to mouth one of great difficulty, although talk to some people and I’m sure they’ll differ with you! On a serious note though, it’s always been an issue I’ve found frustrating and stressful. I can see the words and sentences neatly lined up in my head all ready to come out, yet when it’s my turn, the words never march out in the order I had organized them in. I can capture practically every other word imaginable rather than the one I actually need. It is as I ‘um’ and ‘ahh’ and subsequently blush at not being able to complete what is a basic body function, that the gaze of my eager listener begins to feel piercing. As they hang on my every word, (or rather the few I’ve actually managed to get out) I see the sand in my timer running out. It’s Russian roulette time, so I pick a word that I tell myself is close but realistically it probably isn’t, and I submit to appearing clueless about how to convey my point and my understanding of the English language.
For many and for whatever reason, the thought of being in a situation where there is a need to meet new people is one filled with dread. For me it’s that same old, “I’m simply going to appear utterly ridiculous to those who don’t know me as I cannot conduct myself to my utmost ‘full worded’ potential.” These circumstances create more seizures; therefore, the cycle of stress, seizures and memory loss is in full swing. I have spent a lot of time over the years concerned by these conversations, and as my conversee (yes, I know it is not a word but I rather like it and intend to take full credit for its creation!) walk away, I have often ruminated over exactly what they took away from our discussion.
As you know, this is just another glimpse into the life of someone with epilepsy. In fact, as I write this I realize just how deep the roots of this condition grow. The seizure itself is simply the scratch upon the surface.
That’s why writing has been my savior. It’s the one medium where no matter what my emotional state, no matter how many seizures I’m having, I can be fluent, concise and put exactly what I want to say down on paper. If I was to be given the subject matter of this post to discuss orally I can assure you it would not flow as it is does now – I hope!
Both the extremely surprising and delighting aspect of writing this blog is that over time as I’ve rummaged through thesauruses and flicked through the pages of my dictionary, it’s unknowingly been absorbed and my brain has almost retrained itself to speak. I am much better at locating suitable words in conversation, I speak slower, my mind is calmer and clearer and I am more fluent. Of course, new environments and people can remain daunting, but once the connection between brain and mouth are made, it slowly accelerates giving me the confidence to hold, what many take for granted as a basic conversation.
I am not sure if anyone else with epilepsy has experienced this but if you have I’d love to know the types of situations you’ve found yourself in so drop me a comment below.
Lastly, below is a quote that I adore. It is a perfect example of beautiful words and that is how I perceive words to be, beautiful. In all their unique individuality, they’re just like people…
“To love. To be loved. To never forget your own insignificance. To never get used to the unspeakable violence and the vulgar disparity of life around you. To seek joy in the saddest places. To pursue beauty to its lair. To never simplify what is complicated or complicate what is simple. To respect strength, never power. Above all, to watch. To try and understand. To never look away. And never, never to forget.”
“To have faith is to trust yourself to the water. When you swim you don’t grab hold of the water, because if you do you will sink and drown. Instead you relax, and float.”
– Alan W. Watts
How time slips by! With the warmth and the sun out in full force, I realize it’s been too long since I have written.
As we enter the summer, it does (and should) take precedent. Get your injection of vitamin D and ensure you make the most of the fresh air and outside activities. I love walking, seeing nature; the flowers, plants and trees with their vibrant colors in a season like no other.
This year may see me grudgingly getting my sea legs. I’ve never felt particularly comfortable in water unless my feet touch the bottom. Probably because as I child if I was in it I had to have somebody on seizure watch; therefore, my swimming abilities, whilst I can, are really not strong. ‘Swimming’ is normally associated with me thrashing about and with my water challenged ways I never seem to reach my destination in a straight line. It’s amazing that I do actually reach a destination, but clearly, somewhere along the much distorted line, this method works!
This year I have lots of activities I may try out to ease me in. There is of course a pedalo, a good safe bet; we have kayaking or canoeing, perhaps canoeing as you can fit more than one person in it – safety in numbers (!); you have general sailing of course and if I should go down that road I will count myself fortunate if I am not knocked unconscious by the boom somewhere along the way; or finally, just your average mini cruise on the lake for an hour. This I feel is safest as I diminish all responsibility of getting myself injured or at an intended location safely!
So I think my main companion this summer will be the ever stylish life jacket. It is this trusty friend that will conquer my fear and nurture my confidence to find that by September, I will be writing to tell you that my life’s calling in fact is as a lifeguard and not as an epilepsy blogger. As if!
“Soon they were all sitting on the rocky ledge, which was still warm, watching the sun go down into the lake. It was the most beautiful evening, with the lake as blue as a cornflower and the sky flecked with rosy clouds. They held their hard-boiled eggs in one hand and a piece of bread and butter in the other, munching happily. There was a dish of salt for everyone to dip their eggs into.
‘I don’t know why, but the meals we have on picnics always taste so much nicer than the ones we have indoors,’ said George.”
– Enid Blyton, Five Go Off In A Caravan
I’ve been working on another little project which has required me to research children’s books. During this time I have been transported back many, many years ago when I began my life as a bookworm. I have one of the greatest children’s authors, Enid Blyton, to thank for that.
The quotation above is the epitome of my childhood. I would spend hours and hours locked away in my bedroom, sitting on my green beanbag reading an Enid Blyton book. I read the numerous different series’ repeatedly till I exhausted them, I practically wore the pages away! The magic that was contained in those pages was a door to another world and the creative spark to really stimulate my imagination. It was an escape from the life of seizures.
When I started the research, it was just a convenient excuse to read all my childhood favorites again. What I found to be really interesting as an adult is that the book takes on two very different meanings. As a child you simply see the story, whilst as an adult there is quite a deep and meaningful message behind it. For example (from my very favorite series):
“Well, you know what grown-ups are,’ said Dinah. ‘They don’t think the same way as we do. I expect when we grow up, we shall think like them – but let’s hope we remember what it was like to think in the way children do, and understand the boys and the girls that are growing up when we’re men and women.”
– The Island of Adventure
This has made me even more curious to discover what is behind more of her stories. So with that, I bid you farewell as, yes, you got it, I’m off to get lost in the world of magic and adventures by the author whose writing is like the Peter Pan of books.
Although I’m not very technologically savvy and at times would like to bury my head in a hole, given the choice I’d do everything manually and be content; however, there are so many elements of technology which quite frankly, blow my mind.
Summer is hitting Seattle now (heaven!) and so the shorts, vest tops and summer dresses are dusted off, washed and worn. With this in mind, on Saturday with the beau occupied with golfing, I ventured out to West Seattle which I am ashamed to say is the first time I’ve been since we moved here a year and a half ago. It is there that the beautiful Alki Beach resides. With its stunning white sandy beach, it is only a twenty minute escape from the city but feels like it should be an hour. A new love that I discovered is yet another majestic view of the Seattle skyline from yet another beautiful angle.
It just so happened that by chance I met up with a friend that day too. I haven’t seen her for a while as she travels a fair amount for work so it isn’t always easy to find the time to see each other.
It was earlier that morning that I received a voicemail from her saying that she would love to meet, sorry she hadn’t been in touch but she had been held up because she had had to go into hospital for EEG testing and subsequent brain surgery.
As we walked the trail and talked, it became clear that the experience had affected her as a person. She was now so animated, her face and eyes were bright – it was like she had a new lease of life. As with all who have epilepsy, the daily seizures can slowly grind one down often leaving only remnants of the person they once were. It conjures up depressive states, lethargy and feelings of utter helplessness and that’s just for starters.
She’s an incredible woman. She runs her own business and prior to the surgery she was undertaking everything necessary to maintain the business. She was having complex partial seizures numerous times a day and trying to deal with not only colleagues who treated her like a leper but also her family who continue to struggle with it too.
There had been so many changes. She told me that she hadn’t had any seizures for eight weeks; she had moved, was living on her own and had separated from her partner; she was living closer to family members with whom she had a strong bond, and ultimately wanted to be on her own to get to know herself as she reveled in this change.
Having removed an overgrowth of scar tissue during surgery, her sight is greatly improved and she is able to use her peripherals again. Additionally, her hearing has significantly increased. She explained at first she had to wear ear defenders as the clarity was too much for her body to deal with. It reiterated that having lived through the side effects of the drugs I had been taking it is only when things return to normal that you realize how bad they have actually been.
I got to thinking after that, how did we get so skilled that we can open someone’s skull and remove part of the brain safely so that it improves somebody’s health? The research that has been done and the number of people that have been part of it is absolutely mind blowing to me. Research into epilepsy still has a very long way to go and I don’t think it will ever be at the point where it is complete, certainly not in my lifetime. But that is why fundraising is so important; generating the funds can give someone like Alice her life back.
This meeting spurred me on to begin another fundraising project. Ideas have begun popping into my head at the speed that would give a popcorn-maker a run for its money so I am now busy plotting and scheming. It’s tip-top secret for now, but watch this space for the shiny new campaign coming soon!