No Regrets!

I believe the trick to living life to the full is to have no regrets!

Don’t get me wrong; I have done some stupid things in my time. As a young adult I am sure I got a cold sore before I did something stupid; it was usually boy related.   As I have grown up I have realized that what doesn’t kill you makes you stronger and wiser.

I haven’t come by this understanding on my own. In fact, I have learnt the most from the experiences and example set by my mother.   My father was an adulterer and violent towards her. He was that subversive kind where the bruises were hidden and control was asserted via fear and mental manipulation. My mother was always very quiet and un-opinionated. She gave up friends and other activities including reading, listening to music, playing sport (of which she was exceptional), family outings, and creative cooking. After they separated I started to see the real woman. Once she regained her confidence, I saw determination, professionalism, creative thinking and a sense of fun. My mother does not take crap from anyone. She has taught me to have confidence in my ability and to be open to new experiences. Whilst I am sure she quietly regrets staying with my father for as long as she did, she has made the conscious decision to act and be true to herself. Mum always tells it as it is. Sometimes it is simply hysterical giggles when I step out of a change room, but honest all the same. She is also in love with my ‘defacto step-father’. Her and my defacto stepfather have travelled the world, socialize and enjoy an equal partnership.

And as for what happened to my father? Karma. He died after a three-year struggle with cancer. I found it difficult to mourn him like my Brother, Aunt and her family, and I refused to sit at the front with a family who had disowned me as too like my mother. Once again my mother showed her strength by attending the funeral and emotionally supporting my attendance and choices. I was not invited to walk with my brother and Dad’s family behind the coffin as it left the building. Much like the actions of my father, my brother ignored me, choosing to turn his back on me when I approached.   On reflection, that was the most difficult part of the funeral. My brother and I have since had a disagreement and don’t communicate.

Dad’s death made me promise that I would no longer invite people like this into my life. In this one instance, I do not regret my choices to sit with mother’s family – mum, my aunt and cousins. I do not regret crying because the eulogies were a lie, and I do not regret eventually telling my brother how I felt.  It is true that staying true to yourself can be difficult. At least for me, my decisions then meant for a happier today.

Ok, enough of my family story. Have an excellent new year that is regret free! Live and learn!

MJ

Resolutions of Value

New-Years-Resolutions-Quotes-Images-1019The last time I actually fulfilled a New Years resolution was my final year of high school. I resolved to be invited to a formal other than my own. Lucky for me I caught the bus everyday with the boys from our local Boys College. I was excited to be asked by a close male friend. More than 15 years later, we still communicate.

Since then, like many of you I am sure, I have made the usual resolutions and failed to successfully accomplish them. It seems to me that many resolutions are negative from the very beginning; they have little to no respect for who you are as a person. At least for me, they have always been competitive and more concerned with outward appearances than my own development and wellbeing. With this in mind, I am making the conscious decision to create realistic, positive goals to improve my physical and mental health, career and relationships.

So what are they? I don’t have a list exactly, rather the motivation to not have another seizure for at least 12 months. In Australia there are laws regarding epilepsy and driving. I am currently unable to drive until at least the 23rd January when I will have an EEG and follow-up consultation with my specialist. Hopefully nothing has changed, and the suggested cause of my recent seizures is substantiated. If I have a seizure within this year, I will have my drivers’ license suspended for 12 months. I intend to do everything within my power to ensure this does not happen.

It is interesting how people just don’t understand the importance of having a drivers’ license.   For me, it is simply the independence driving affords. I can meet friends anywhere I choose, I can get to work earlier or leave later and I can go grocery shopping without worrying if there are too many bags to carry home. Ultimately my independent and stubborn soul finds the need to rely on others difficult to handle.

In the interest of my own wellbeing, independence and health goals I am taking stock. I am sure the cause of my most recent seizures was stress.   Actually now that I think about it, all of the seizures I have had in the last 10 years were stress related.   I need to remember that you work to live, not live to work. Despite what we think, everyone is replaceable. So if I want to reduce stress in my life, I need to consider how stress affects health and discover ways to overcome it.

So what is stress and how does it affect your body? Researching the answers to these questions lead me to the Stress Management Society. See their web page at:

http://www.stress.org.uk

On this web page I found a stress test. Well no surprises there. However some of the suggestions are extremely valid and will form part of my plan for action:

  • Work off stress with physical activity
    • Release adrenaline and increase endorphins, the happy hormone.
  • Say “No”
    • When necessary, say “no” and don’t attempt to fulfill unrealistic expectations.
  • Time Management
    • Do one thing at a time. Be organized and factor in time for unexpected issues. Write a list of work that needs to be accomplished. Prioritize an order of importance and decide what jobs can be delegated to others. Finally, consider if there are any jobs that are not important and can be deleted from your list.

I will begin now with physical activity that encourages endorphins. Whilst I have always preferred to play a musical instrument or sing for hours than exercise I will begin by finding activity that is enjoyable. Earlier this year I bought a treadmill. I actually quite enjoy a brisk walk on the treadmill with a great play list on my iPod. Similarly I enjoyed my associations with Planet Inline, an inline skating school in the heart of Brisbane City.   For obvious reasons, skating is not a safe activity at the moment however there is nothing stopping me resuming regular treadmill activity with an updated play list to keep things interesting!

There is so much yet to say. I am finding this exploration into the aspects of my life therapeutic and informative. Whilst I keep you informed of my progress, please continue to leave suggestions and feedback.

“Those who gave thee a body, furnished it with weakness; but He who gave thee Soul, armed thee with resolution. Employ it, and thou art wise; be wise and thou art happy.”

– Akhenaton, ancient Egyptian ruler

MJ

Laughter is the Best Medicine!

It is just over two weeks since my seizures on the evening of 3rd December. My tongue is no longer sore, but it feels like I have just left the dentist; half of it is numb! I sound like the women in that really old EXTRA chewing gum commercial.

Hopefully it improves before school resumes next year. Students are observant and will eventually feel the need to impersonate my new sound.

As I have no intention yet of informing students and thus their parents about my epilepsy, I will have to make up a story.

“I was kidnapped by the Grinch and forced to watch One Direction and Justin Bieber concerts. The resulting nightmares caused a nervous reaction where I chewed my tongue.”

Sounds like a plan…

Always laugh when you can. It is cheap medicine.

Lord Byron

MJ

I’ll Show You!

ill-show-you-how-great-i-am-2It all began with two things:

  • A tonic clonic seizure the day after my eleventh birthday; and,
  • The list of “don’t do’s”.

You know that list… the one where the specialist diagnoses epilepsy and proceeds to tell you and your family all the changes that must be made. I specifically remember the following:

  • School and concentration would be an increasing challenge;
  • I would no longer be able to go to the cinema;
  • TV, flashing lights and flickering sun light may cause problems;
  • Roller Skating, bicycle riding and my team sport of Netball were now dangerous;
  • Be conscious of the effects of music, its volume and live performance;
  • You should not expect to qualify for a drivers license; and finally,
  • You should never be left alone.

All I remember thinking was, “What! That’s unfair!” and finally the typical teenager response, “I’ll show you!”

At first I wasn’t allowed to participate in my school swimming carnival. That didn’t bother me. As a young nerdy musician, I was very pleased about that decision. Similarly, I loved the Serengeti sunglasses my mother bought me for car trips and outside activities!

What did get frustrating was being watched like a hawk. I roller-skated with company, I rode my bike with company, I swam in the beach with company. I wasn’t even allowed to lock the bathroom or toilet door anymore!

I was too afraid to tell my friends. Teachers at school were now even more conscious of my activities.  One memorable example was our excursion to the Sciencentre in Brisbane. I vividly remember the fantastic spinning chair. Here is an excerpt from the Science Centre web page:

‘Sit, belt up and spin out. Take control: speed up or slow down using your body. Discover the tricks that skaters, dancers, gymnasts and divers use. Warning: don’t do this just after a meal.’

(www.sciencentre.qm.qld.gov.au)

You can understand how I was looking forward to my turn. Unfortunately, while waiting for my turn, a special needs teacher quietly removed my well-behaved butt from the line and took me to this stupid platform that did a similar thing only at a snails pace.   Whilst I said nothing and was polite, it still makes me furious.

Yes, school did become a challenge. I was diagnosed with both tonic clonic and absence seizures. The tonic clonic seizures were controlled by medication relatively quickly, however the absence seizures, although short, happened often. It is a cycle; concentrate, get tired, stress because you missed information, sleep, concentrate, get tired, stress, sleep…

You get the picture.

As for the DON’T DO list:

  • I have my driver’s license.
  • Roller Coasters – AWESOME!
  • Bungee Jumping in New Zealand – AWESOME!
  • Movie attendance: Although that IMAX cinema makes me incredibly ill, dizzy and shaky.  Same thing with a few arty-farty movies i.e. “The Blair Witch Project”
  • Rock Concerts!
    • Radiohead: Fun but the lighting gave me tunnel vision and a wobble in my step;
    • Other concerts include: U2 (twice), Metallica, Nickelback, Dixie Chicks, Billy Joel, Elton John, Robbie Williams (twice), The Living End, and Powderfinger;
    • Festivals including Big Day Out and V Fest attendance (John Butler Trio, The Pixies, Pet Shop Boys, Muse, Angus and Julie Stone, Wolfmother, Tool and Rammstein);
    • Musicals and Opera: all over the world.  Too many to list.
    • I am looking forward to Dave Grohl and the Foo Fighters in early 2015;
  • I’ve trained and passed the Fresh Meat test for Roller Derby;
  • When I have time, I join classes to learn street skating on Roller Blades;
  • I have completed my Masters Degree in Educational Leadership with a 6.25 GPA; and,
  • I have lived alone and away from my family.

Clearly, I am one of the lucky ones.   Despite this, I too am familiar with the ignorant, panicked, wide-eyed look on people when they learn about others’ and my own epilepsy. This has meant that there are particular events permanently embedded into my memory.

For what-ever reason I was motivated, this blog will hopefully serve as some personal reflection, information, encouragement and support for others.

MJ

My nomination for the Liebster Award!

LiebsterAward-2Thank you Chris from www.livinguptoexpectations.com for the Liebster Award nomination. I am excited that my single blog entry has already, within 24 hours, made an impression on people. I admit, going ahead with this blog took some courage. I have always been afraid of the discriminatory and/or ignorant treatment of people with epilepsy.  As a new blogger, I have had to research more about the Liebster Award:

  • It is an award that exists only on the internet and is awarded to bloggers by bloggers.
  • The word “liebster” is German in origin and has several definitions that include dearest, sweetest, kindest, nicest, beloved, lovely, kind, pleasant, valued, cute, endearing, welcome, sweetheart and boyfriend (really?)
  • The Award follows the principles of a chain letter, that it should be passed on.
  • Bloggers are nominated and it is their choice to accept it, and continue PAYING IT FORWARD or to refuse to accept it, thereby stopping or interrupting the chain.
  • Variations have been made over time to the “rules”.
  • And lets be honest, the marketing associated with accepting this award helps promote your own and other worthy bloggers.

The rules are simple:

  • If you accept the award you should link your acceptance post back to their blog;
  • Answer the questions posed by the nominating blogger;
  • Pay it forward to 5-10 other bloggers with less than 200 followers.

I am gratefully accepting this award and am now paying it forward! The questions I was given are:

  1. What is the main goal of your blog?

To show that ‘you can if you think you can’! And to contribute to the growing number of courageous people who are helping to improve awareness and dispel the myths associated with epilepsy.

  1. Link to your most favourite blog post and tell why it’s your favourite.

As Chris explained, I am new to blogging. Whilst I have often considered the value of reflecting and sharing struggles and triumphs I was afraid. The blog post that finally motivated me was titled, ‘Walking a mile…to let it go’ by www.worldaccordingtowilliams.wordpress.com

Particularly if you are struggling to fall pregnant, I would recommend this article. Having epilepsy brings its own challenges for family life, but her argument for what constitutes womanhood should be a message that everyone hears.

  1. What is the one moment in your life you would re-do if you had the opportunity?

Honestly, I cannot think of one. I perhaps would have kept quiet instead of destroying a relationship by telling my brother a few home truths, although I still think it needed to be said. I have no regrets in my life. I have learnt from every mistake or stupid comment and am better off for having made them.

  1. If you could have any superpower, what would it be and why?

Superpower… to immediately sing and play every musical instrument I chose with the combined skill of a virtuoso, a blues musician, an opera singer and a rock god.   But then again, half of the fun is the rehearsal process.

  1. If you could have a large block of free time, what would you be doing?

That depends on the large block and the amount of money I have available to waste. Currently, I just want to sleep and read trashy paranormal romance novels. But I would shop, travel and learn the mandolin, violin and bagpipes if I had the money or the permission from my man. [insert giggle here]

  1. When was the last time you were so happy you broke out in tears? And why?

It was a long time ago. My secondary girls vocal ensemble won gold at the QLD Catholic Colleges Music Festival. I had been entering choirs of all abilities for six years prior and never achieved such success. We were in a beautiful cathedral with excellent acoustics when the awards were announced. When I heard the name of my choir I yelled “yes!” with the accompanying fist pump. Then it dawned on me that we had actually received Gold. That is when I cried. Too many colleagues from all over QLD came up and congratulated me. My girls were just as excited. Of course that just meant that I became a sobbing hiccupping mess. It is a wonderful memory.

  1. How has your faith had an effect on your life, relationships, and blog?

Hmmm. I have studied theology, am a qualified religious education teacher and have seen enough hypocrisy in my life to wonder. At least I know I believe in God, but have little faith in many of the men who dictate rules and laws to follow. Like why is marriage for life despite the fact that your husband is beating you up? Surely God wouldn’t expect you to remain committed in that situation. Similarly, if Jesus were on earth, he would associate with the outcasts. So why, given we know so much more about the brain, is it unacceptable in many Christian cultures to be gay?

There is definitely some truth in Marx’s statement that ‘religion is the opiate of the masses’. Luckily for me, I have in recent years seen and experienced a more united, forgiving and communal aspect of Christianity.

  1. Who is the person you’ve learned the most from in your life?

Chris from livinguptoexpectations.com summed it up well. Whilst I have learnt much from my family, my partner, lecturers, professional colleagues and friends, I think I have learned the most from my own choices and experiences.

  1. What are 3-5 adjectives that sum up who you are?

Positive, passionate, committed, goal-orientated, and fun-loving.

  1. Name something on your bucket list. Why did it make it on your list?

Only one? Ok then…

I would like to complete my PhD. Why? I am partial to the sound of Doctor in front of my name. I also love the floppy hat that you get to wear.   And because too many people think it is too hard and that I will struggle. I have this “I’ll show you attitude” that consistently motivates me.

Nominate five other blogs:

www.worldaccordingtowilliams.wordpress.com – random reflections on life, love, politics, books etc.

www.meganswalktoend.com – about living with epilepsy

www.paranormalromanceslut.com

Because I read them so quickly I need help to keep up supply!

http://sitagaia.wordpress.com – Life at full volume. About living with epilepsy.

http://solfasounds.wordpress.com  – A blog for music teachers in love with the philosophy and methods of Zoltan Kodaly.

Thanks again for the nomination.

I hope you enjoy reading my future posts.

MJ

http://solfasounds.wordpress.com – an excellent philosophy for teaching music.

Welcome To My Coming Out Party!

“Life is not perfect; it never will be. You just have to make the very best of it and you have to open your heart to what the world can show you. Sometimes it’s terrifying and sometimes it’s incredibly beautiful. And I’ll take both, thanks.”

Graham Nash in, Zuckerman, A. (2008). Wisdom. PQ Blackwell Limited: Auckland New Zealand.

As a reaction to two tonic clonic seizures on Wednesday evening 3rd December, I searched the Internet for information about professionals achieving despite epilepsy.   I found very little to no information. The reason is very simple; their epilepsy does not define who they are. They have had to work harder than most to achieve and maintain positions of responsibility. In many industries, the stigma attached to epilepsy is detrimental to career success and means that many people with epilepsy remain quiet.

You only have to read about Wally Lewis, well known Australian football player, who kept his epilepsy silent. Don’t get me wrong; I have huge issues with Wally Lewis’ “coming out”. I am in two minds whether I am proud that he kept playing despite knowing the risks, or whether I think what a stupid man. I understand that a head knock escalated the problem. And one other question… did he continue to drive during this? It is stupid enough that playing a dangerous game put him at risk, but what about the people around him?

Unlike Wally Lewis, many of us with epilepsy don’t have the option of brain surgery.  I feel he is saying to the world, “My name is Wally Lewis. I had epilepsy but was too frightened to tell you all. Now, post brain surgery, I am under no risk of seizing in public. What a relief! Now I can help with epilepsy awareness.”  In many ways, he is simply proving the point; that living with epilepsy poses problems far greater than dealing with seizures.

So I am making a daring choice to ‘come out’ and publicly reflect on my experiences living with epilepsy as I succeed in my professional and personal life.  Perhaps in doing so, I might contribute to the growing awareness of epilepsy and encourage the success of other individuals who are struggling with any form of adversity.

I am looking forward to sharing and learning from you all!

 

MJ