Support Comes In Purple!

I work with some fantastic, genuine and caring people!

Today was Purple Day for Epilepsy Awareness. I asked staff to wear purple a while ago, but didn’t remind them or force the point. Unbeknownst to me, a surprisingly supportive staff member sent an email, reminding everyone to wear purple!

This morning, as each staff member arrived, they excitedly paraded around in their purple clothing! The Library staff got out their purple velvet tablecloth for the display table! We all enjoyed purple food including a really good roast beetroot and feta dip! Cadbury Chocolate counts as purple food too. The purple wrappers are just so inviting, and stress relieving.

To be honest, I was stunned. Sometimes the simple gestures of others blindside you, and remind you how good and selfless the world can be. I am reminded to appreciate the wonder and forget the rest.

 “We cannot do great things on this Earth, only small things with great love.” 
 Mother Theresa

Mother Teresa

It’s All About Perspective

Quote for the week comes from my College Chaplain who said:

“Life is short. Take the scenic route!”

 We had just attended the funeral of a mother taken too early. One of the boys was checking that he would be back in time to catch the bus.  It was perfect timing.   In that moment, I think we all realised that life really is short. The time we spend winging about work, family, money, and health is unimportant. If we turned our focus in the other direction, we would certainly be much happier, healthier and fulfilled. So today instead of focusing on the sad and frustrating things, I am going to try and write about all things uplifting.

Many years ago as part of my undergraduate degree, I took a course in creative writing. I excelled in stories and poetry about adultery, revenge, vampires, blood, emptiness and death. There is something easy about writing sad stories. We casually joked that it may be a psychological problem of mine until the lecturer forced us to write something positive. He said that stories and poetry with uplifting and positive messages are difficult. Even Shakespeare struggled with the concept. So as I attempt to write this uplifting post, I am challenged once again.

Honestly, I have had a very messed up week. It is a knotted jumble of the good with the bad.   Mostly, I am pre-occupied with the exciting news that I will soon own and love a Havanese puppy. In a crazy twist, the litter was born last Friday 13th. They are black with white patches and one of them will be mine in June. In amongst this, I learnt of and attended a very difficult funeral. I cannot express the pain I had watching two teenage boys act as pallbearers for their own mother. Whilst, it is not an image I am going to forget anytime soon, it does motivate me to live well, foster healthy relationships and to smile often!

So back to the puppies! As a first time puppy owner, I am thankful for YouTube and all the many people who have shared their methods for toilet training a puppy! I have heard everything from “go potty” to “release”. It really is quite entertaining stuff.   I am also enjoying trolling the online pet stores for crazy and cool ‘puppy stuff’. If you haven’t seen a puppy booster seat for a car, you have not spent enough time doing your research.

Names are an interesting thing. Everyone is willing to share his or her own unique ideas. So I began my own possible list of boy and girl puppy names. My stepfather thinks I should call it ‘cat’. My man on the other hand likes ‘Satan’. I did like Johann after the composer Johann Sebastian Bach. It occurred to me that you could call, “Johann!   Bark!” But perhaps that is is only funny in musical circles?

In the end, and over a bottle of sparkling Shiraz, I have decided on one boy and one girl name. Given I don’t have to name the puppy until he or she is five weeks old, I will hold off making my choice public. You never know what I could think of in the meantime.

As I sign off, I am reminded that there are only nine school days left before Easter holidays! Yippee! And remembering the title of my blog site, Adventures with Epilepsy I am thankful that I continue to remain seizure free.

What great adventures might I have this week?  I’ll tell you about them soon.

In memory of all the people we love!

MJ

Image from:

Purple Pledge for Epilepsy Awareness

March 26th is Purple Day for Epilepsy Awareness.

Firstly, I ordered my own purple leather Medic-Alert Bracelet to support the cause.

Secondly, I approached the right people and requested a staff morning tea to raise money for Epilepsy Queensland. I was told no. Despite there being two staff members dealing with epilepsy, and numerous students, I was told no.

Admittedly, I was furious at the time. However, I cannot expect others to understand the reality of living with epilepsy or expect them to support something they don’t understand.

In a moment of clarity, I decided to creatively bypass this decision. Instead of asking staff to donate to yet another cause, I have requested staff at least wear purple. If the male primary teaching staff can have striped shirt day or spotted tie day, then I certainly cannot get into trouble for requesting staff wear purple! Today I politely requested staff at my school to wear purple. I will provide the purple food! At this time of the term, a little purple wrapped Cadbury Chocolate never goes astray!

I also provided information about Epilepsy Queensland’s Purple Pledge. All you need to do is read the 10 Facts about Epilepsy and sign Epilepsy Queensland’s Purple Pledge. I’d like to quote fact number nine that really hits home. I have lost count of the number of times I either worried about professional respect, trust, and career advancement. Check out fact number nine:

  1. The social stigma, coupled with the emotional and physical trauma associated with uncontrolled epilepsy, means that many people living with epilepsy suffer in silence, often for years. People with epilepsy may avoid revealing that they have epilepsy to their employer, their friends, even their loved ones, for fear of rejection, loss of acceptance or opportunity, or of being shunned. These are very real fears, as stigma and ignorance still exist today.

If you are interested, the following web site is a great place to start:

http://www.epilepsyqueensland.com.au/site/content/purple-pledge

Share the love! Support epilepsy awareness month and wear purple on March 26th!

MJ

Love and Loss

When I started this blog I thought that ‘adventures with epilepsy: confessions of a life well lived’ was the most perfect title.   I hoped that I might discuss my excitement, fears and adventures with like-minded people rather than simply my partner and family. For reasons associated with my ‘life well lived’, I haven’t written lately because I didn’t think I had anything ‘epileptic’ to talk about.  My colleague suggested that this was in fact reason enough.  Hence the inspiration for this post. However in a contradicting twist, I am aware that this term at least, I have noticed my bad days more than I have ever done.  I’m sure the consequence of another seizure and its effect on my driver’s license is motivating the echo in my head reminding me to, “be well”.   As committed as I am to this new yoga inspired, stress free, hippy professional life, there have been a number of events that have tested my state of mind with epileptic consequences.  In this post, I simply want to share one of those events.

Event

If the news did not reach you internationally, then let me set the scene… Not very long ago we had a hurricane tear through Queensland, Australia.  Whilst it did not terribly affect Brisbane and the south east, we did get a significant amount of heavy rain and flooding.  On Thursday, just as the rain began setting in, I arrived at work with the hugest of huge headaches.  You know that frontal lobe headache that makes concentrating difficult without adding the glare of a computer screen, rehearsals and an evening excursion to the musical WICKED? Despite the pain-killers it just would not go away.  I ended up leaving school after my last class to go home, shut myself in a dark room, and sleep for an hour before having to supervise a senior music excursion. I survived.  WICKED was awesome!  And to top it off, the boys thoroughly enjoyed and engaged in the experience.  My job done! But wait, there’s more! I woke up Friday morning feeling dodgy again.  It was a simple decision really; my long term health is my priority so I decided to stay home from work.  The problem with being a teacher, is that this is not necessary the easiest option.  The reason teachers often still attend work despite ill health is because of the following:

  • We still must notify the Deputy by 6:30am and preferably send through our lesson plans by 8am.
  • As teacher of music, my lessons plans must reflect the high probability that it will be supervised by a non-music specialist.
  • And what rehearsals might we miss? Must email student reception so they can notify parents that the rehearsal is cancelled.
  • Prepare to deal with the hundreds of emails that will require a response the following day.

Not a problem.  I planned the lessons and sent the emails before returning to my cosy bed in the dark. What next? My partner and I were becoming increasingly concerned with the health of his cat Ashram.  As I was already home, I promised to take her to the vet when I felt more like myself.  I did.  I was so worried about her wellbeing so I repeatedly sang “Soft Kitty” as we drove to the vet. Question:  How do you tell the love of your life that his cat, who he has owned for 2 days short of 20 years, that she has serious kidney failure and must be put to sleep? One:      Try to suck up your own pain and provide a simple and clear explanation Two:     Don’t sob uncontrollably Three:  Be the presence he needs whilst purposefully ending a relationship that has lasted half of his life. A situation like this couldn’t have been staged better.  It was raining, the roads were flooding, and the threat of damaging storms was very real.  Now add this to the picture:

  • My man in a suit and tie, outside in the rain, digging a hole and burying a beloved pet.
  • Me standing behind him, sobbing as quietly as I could manage.

I did what any sane woman would do.  I headed to the shops and bought every comfort food I could think of.  We had red wine, frozen chips, frozen potato gems, chocolate, salt and vinegar Pringles, fresh bread, butter, avocado and ripe juicy tomatoes.  I then proceeded to wait on him hand and foot. The problem was that I couldn’t go near him properly for at least two days.  I felt selfish because of my uncontrollable crying.  I showered for long periods of time just for the privacy to experience my own pain.  I also chose to re-read “50 Shades of Grey” in the interest of inspiring other, less depressing thoughts.  Despite this my absences seizures became more noticeable, and on occasion I suffered a minor tremor in my hands and jelly legs.  Whilst people mean well and continue to remind you that stress is bad, this external motivation tends not to come with practical solutions relevant to your needs.  What is important is our own personal motivation.  I found that plenty of sleep, exercise, piano practise and commitment to both home and work gave me focus to climb out of what could have been a driver’s license threatening moment. Three weeks later and I am feeling more settled.  Whilst Ashram is still that unnerving shadow in my peripheral vision, I am encouraged by my increasingly positive ability to not let life’s downs dictate epileptic activity. Have a great weekend! MJ