A positive start to the New Year.
A positive start to the New Year.
This is a book that I simply couldn’t put down – unless I was made to or it was necessity.
Having had a sneaky peak prior to publishing, I spent endless (and emotional) bus rides home glued to my cell phone, undefeated as I scrolled through reading chapters in the tiniest writing because my phone wouldn’t play ball and increase the font for me.
Once the book itself came through, I smashed it! Turning the pages had never been such a joy – regular sized font on paper!
I found Electro Girl to be raw, organic, honest, witty and with a degree of heart break because much of what was on those pages I could relate to.
One of the things that initially attracted me to Lainie through my work with FFWE, was her attitude and positivity towards her epilepsy. We share the same view, characteristics of dealing with epilepsy (i.e. for periods during our lives trying to ignore it!) plus an alternative approach to managing seizure activity, so it was an absolute joy to connect with someone who was similar to me.
Each and every one of us deals with the condition differently, why? There are so many variables; life, lifestyle and upbringing; geographic location; what information is available, the extent of our doctor’s knowledge along with the type of seizures and epilepsy we each have; fear and how our community reacts to epilepsy. Do people have an understanding of epilepsy or is it similar to that of a country like Cameroon where they are truly fighting hard to change the dire situation of genuine belief in possession, devils and evil? But that aside, the route that Lainie has taken shows a deep-rooted strength which not everyone possesses.
The book throughout oozes her personality. The humor and light heartedness with which it’s written is; however, somewhat bitter sweet. As someone with epilepsy, I can see the heart break which lurks beneath the surface and the necessity to use humor in order to get through each day. It’s a coping mechanism, we all have them. I thank my lucky stars this is Lainie’s as she has written the most inspiring account of her journey with epilepsy which will impact, I hope, huge numbers of people due to her ability of making it so accessible and engaging.
Setting the scene with her background from birth, one really gets a sense of who Lainie, and subsequently Electro Girl are, right from the start. The documentation of her beliefs, interests, the way she responds to what comes her way, both good and bad, provides a foundation for understanding her. She was thorough in laying the foundation for the reader to understand her perspective on life up to the present.
There is no sugar coating with Electro Girl, you hear it, warts and all, and uncensored. If you don’t like it, I could imagine in Lainie’s words she would respond with a casual, “F*ck off then!” It adds to the richness of her ‘adventures’ with Electro Girl. (Adventures is how I refer to mine so therefore, with a Superhero that seems most fitting too.) She elaborates upon the challenges and pain which she dealt with family and growing pains alone.
As she navigates through, jobs, relationships and travels, the defiance of not letting epilepsy get the better of her or her lack of acceptance is powerful. Her mentality of choosing to undertake an activity knowing the possible risks involved but doing anyway is something painfully familiar. One particular excerpt which made me laugh out loud on the bus, was the skydiving incident. She undertook a tandem skydive of 11,000 feet without disclosing the epilepsy. Whilst she was absolutely fine, her skydiving partner who was without any condition, vomited into a bag at 9,000 feet. There were a few tears of laughter from me and some very strange looks from the people on the bus I can assure you!
So, the diagnosis. I was overwhelmed by the resilience that was expressed when dealing with the seizures. Ignorance is bliss springs to mind, purely from the perspective of it being yet another coping mechanism for a period of time. This isn’t by any means a criticism of Electro Girl as it’s often one of the developmental processes prior to acceptance.
Her candidness of stating what many don’t want to or aren’t ready to hear, (that we have to take partial if not more responsibility for our own health), is deeply refreshing. Not being a fan of pill popping unless absolutely necessary, much like myself her attitude of pursuing the orthodox route to get the information and subsequently taking that and undertaking additional research, is by far a much tougher route to take. There are many dead ends and disappointments along the way but these are necessary as a process of elimination. This may put some off and one hears the echo of, “It’s too much work” or “I don’t have the time”; therefore, putting the seizure disorder in the hands of the doctor and skipping off into the sunset with the hope that everything will be just fine (my words not hers). Her endless research and exploration demonstrates the determination she has to heal and be in the best place possible. This could be, for example, solely holistically through meditation, nutrition and the use of CBD oil or it could be complementary medicine and orthodox medicine combined. She conveys the importance of remaining open and the positive health benefits that outlook may have.
What is also welcome as a reader is that she does not preach. Her story is out there, her experiences, what she has tried over the years, what she has found helpful and what was not. The last few chapters, she bravely opens up exposing her vulnerability and the discomfort that that brings when talking honestly about epilepsy and seizures. She uses it so that it may help others, should they choose a comparable route.
So, as I write my closing paragraph, I have to say just how proud I am to write this review. This is an enormous accomplishment for Lainie and I am so fortunate to be working with her in raising awareness for epilepsy and our parallel advocacy. It surprises me how the most unexpected friendships develop. It shows me that distance and whether you have actually met someone has no bearing on connections which can be formed.
Congratulations Lainie you have achieved the ultimate, I’m so proud of you!
Not being a huge fan of the phrase ‘New Year’s resolutions’, I prefer to think of it as positive change which one can realistically aspire to.
Stepping into 2017, I like the thought of facing fear. Fear so often rears its ugly head when we step out of our comfort zone. I for one have an extremely cosy comfort zone and have spent many years decorating it. I have put lusciously comfy chairs which you can lose yourself in, there is artwork, inviting lighting along with incense and candles burning. Why would I want to leave that?!
Well, there comes a time when you need more than that space, a change. Perhaps different artwork, I might want to alter the lighting or generally make my comfort zone bigger and that’s the key, it’s expanding not leaving. I find the smaller the comfort zone the quicker I feel the need for change; hence why I made mine so appealing so as not feel the need for expansion.
That being said, there is always one corner which is dark and foreboding. It doesn’t matter how much light I place there, it never warms up.
This I think is the key to this quote, or rather my interpretation to it. When taking account of epilepsy and seizures. If risks aren’t taken the condition can remain the same. In my experience, the example I use is that of my previous neurologist.
He was a lovely man, very friendly but unfortunately over time with a grave mistake made I had to make the difficult decision to leave his care. That was a very tough move to make. Doctors have had years of experience and knowledge and we put ourselves in their hands for all manner of things everyday, and while they give us the miracle of a quality of life, they are after all human.
Making the phone call to ask for my files to be transferred to a new epileptologist was a hard one, I remember feeling terrible! I rarely felt comfortable questioning or vocalizing my choice to go a different route than the one he suggested. His response wasn’t always as I had hoped and I often felt as if I was a burden or that I was being ridiculous.
We know our own bodies and it’s important to be able to bite the bullet to give ourselves the best care possible. If you’re umming or ahhing as to whether a change is needed in any aspect of the care for your seizures, always go with your instinct. You know your body, and whilst medicine can do the tests, doctors have the knowledge they will never know your body and how it feels as you do due to the fact everyone is unique.
So, for 2017 I wish you all the gift of courage. The courage to put yourself first in whatever capacity that may be. You are worth it and you deserve the best care that is available for your health.
Here’s to a happy and healthy 2017 for all.
Happy New Year everyone, here’s to a healthy, peaceful and hopeful 2017.
“It’s pages are blank. We are going to put words on them ourselves. The book is called Opportunity and its first chapter is New Year’s Day.”
– Edith Lovejoy Pierce
“Pain is inevitable, suffering is a choice.”
– Sally Komar
As I post one of my last blogs of 2016, I want to take the opportunity to thank all my readers for their support throughout the year. Your comments and likes mean so much and show that together we’re doing our job in raising awareness. We still have a way to go but it’s good to look back and see how much we’ve achieved and how far we’ve come, it puts life and our work in perspective.
It’s been an eventful year for me in many different ways and I look to 2017 for peace and hope. Having changed my neurologist for a very knowledgeable and respectful epileptologist who listens and has a great deal of common sense, 2017 will see my transition from Depakote to Lamotrigine which I hope will be a great success.
I realize as I see posts which say ‘x’ amount of days seizure free, I don’t know if I have ever had one of those since before going on Epilim/Depakote (Sodium Valproate) at the age of 11. That was 25 years ago. I am, however, very fortunate to be able to function on a daily basis even if it is challenging at times.
My intention for 2017? Continue to raise awareness and advocate for epilepsy, fund raise and focus on my strengths and not my weaknesses.
Merry Christmas to you all and try to have a seizure free festive season!
When I discovered this quote, whilst part of me thought it a little on the controversial side, the other part jumped for joy at the truth which resides here.
Further to my last post and reading Lainie Chait’s Electro Girl autobiography, when I reflected upon my own journey with epilepsy, this resonated deeply with me.
One of my mantras for dealing with epilepsy is ‘research, research, RESEARCH!’ You can’t just hand your condition over to a neurologist and allow them to do all the work; if so, then the likelihood is that the chances of success will diminish. Sounds crazy huh? I’m a staunch believer.
Based on the statistics in 2014 from the Epilepsy Foundation, it states that 50% of seizures are eliminated by drugs, 30% are partially reduced and 20% are referred to as ‘refractory’ which basically means unresponsive to the chemical. So, while the professionals have a wealth of knowledge it’s good to remember that they don’t know everything, including making sure you’re on the right meds, they’re human after all.
Given those statistics, why wouldn’t you go above and beyond to maintain your health and give yourself the best quality of life?
We have to take the majority of the responsibility for our healing. Leave no stone unturned and travel down as many roads to discover and experiment with different orthodox and complimentary methods both together and separately as one can. Once all the information has been gleaned then is the time to begin decision making. The ultimate decision lies solely with YOU. It is not with any therapist, neurologist or epilepologist; they are there to advise and more importantly to respect your final decision – you know your body.
I have an incredible epileptologist, he treats the body holistically as well as having a very significant orthodox education. We’ve somewhat been at loggerheads as he’s keen for me to go on Buspirone for my anxiety and I don’t want any more drugs! While I appreciate that the anxiety would decrease and could subsequently have a positive effect on my absences, I have chosen to discard this advice purely on the basis that this combination could potentially cause more side effects – a chance I’m not willing to take.
So, for me, the next step is using a CBD cream called Cannidex to see if there’s success. A wonderful company http://cannidex.com/ who reached out to me who are wanting to change the lives of people with epilepsy. Fingers crossed!
The mail is becoming more and more exciting as we get closer to Christmas. Packages from England and Canada are arriving sporadically, but this particular day I had a package from Australia.
I was over the MOON as I knew what this manilla envelope meant! I finally got to hold this book in my hands after reading parts of it in tiny print on my cell phone and others on my laptop. My fabulous, inspirational cyber friend (hopefully we will meet in person at a later date!), Lainie Chait a.k.a Electro Girl who is yet another resilient individual suffering with epilepsy, is someone I have had the privilege to work alongside during this seizure journey.
She has spent the last couple of years creating this book, documenting her life and specific experiences with the condition. I was lucky as she gave me a sneaky peek of her composition before publishing, and I can tell you it is phenomenal.
It’s funny, witty, poignant and relatable. I don’t want to give away too much as I have a couple of chapters left to finish, but I will be posting a review of the book to give you a taste of what’s in store during your read. If you can’t wait till then, check her out on Twitter at Electro Girl and on Instagram, electro_lainsta – get following people!