Silent Promises

I’ve become such a cry-baby since the birth of my daughter.  I think the tears are a combination of fear, what-ifs, nostalgia, happiness, love and faith.  They are messy tears and ridiculously unpredictable.

For example, I can’t read her Mem Fox’s Ten Little Fingers and Ten Little Toes without breaking into tears.  Similarly, I was loving Outlander but cannot face it after the main character miscarried at full term. I cry at beautiful videos on YouTube too.  Like the one I watched today by Dude Dad:

https://youtu.be/z69K3AzBjME

It occurred to me tonight after finishing reading another lovely book by Mem Fox called Time For Bed that I need to commit every beautiful moment to memory; the cuddles, smiles, the crazy antics, the fun times, the challenges, and every milestone.

But how do you guarantee memory retention when Grand Mal Seizures starve the brain of oxygen and effect memory?

Mostly I’ve noticed that the memory loss effects disposable and insignificant moments.  In general, the memory comes back through discussions with others, Google Maps, and focus.  But the seizures I had last year have really thrown me.  So many memories are hazy and out of focus.

I’ve always believed (Positively?  Naively?)  that my brain simply uses a seizure to reset and clean the hard drive that is my brain.

But tonight, as I cuddled and read to my beautiful daughter, I felt the tears well up again!  It occurred to me that a seizure may delete these precious moments from my memory.  I sat there and kissed her forehead and committed that moment to memory.  I silently promised her I would do everything in my power to never forget.

Agatha-Christie

Image:  http://www.myincrediblewebsite.com/agatha-christie-on-a-mothers-love/

Keep On Keeping On

I love being a mum.  She inspires me to be the best version of me. Her very presence has taught me about what really matters.

My daughter was conceived with the miracle help of IVF and born via an elective C-section.

I highlight the C-section, because of the wide-spread shaming of women who elect a C-section.  We make these major decisions based upon the health and wellbeing of our families and no one outside of that family has any right whatsoever to comment.

A C-section for me alleviated the concern that stress and fatigue would trigger a seizure during delivery.  I could never forgive myself for selfishly insisting on a ‘natural birth’ if I hurt my daughter in any way.  To be honest, it never really crossed my mind to do something so stupid.

I breastfed my daughter.  I take Keppra and Lamictal which has minimum transference through breast milk and the National Breastfeeding Association Recommends that you breastfeed for a minimum of six months. So that was my aim.  I was warned that this might be difficult given that fatigue is a major trigger for my epilepsy.  To say, I was adamant and little dismissive of their advice is probably an understatement.

When my daughter was two months old, I had a serious episode.  Or at least that is what my specialist described it as.  I call it three major grand mal seizures one after the other that had my family thinking my life was over.  I was in bed breastfeeding my little girl when the first one started. Apparently my arms stretched out straight as if I was somehow, unconsciously passing my child to her dad. But in reality, it sent her flying into her dad’s arms.

***

Before I became a mum, I didn’t understand the true reality of epilepsy.  If I had a seizure, I always new it was because of something stupid I did or of ignoring the signs – like being stressed and run down, and not getting enough sleep.  The consequence of not being able to drive for a few months was really the motivator behind my seizure-free life.

But when your decisions impact the safety of a child who grew inside of you for nine months, nothing could be more life-altering.  I wanted my independence to be a great mum, but also shuddered at the possibility of drowning her in the bath because I had a seizure…

It really changed my attitude to epilepsy.  Before, epilepsy was something I rebelled against; I was always out to prove that it didn’t impact my life.

Now, epilepsy is something I have.  It doesn’t stop me from living a full life, but I now think more carefully about how I do things, the timeframes within which I can achieve them, and it helps me know when to stop or take a break.  And I admit, it makes me feel like a crappy mother quite often.  But so you know, with a little help, I started to express and her Dad began giving the night feeds.  My daughter was breastfed for ten months!

Now it isn’t just about me. It is about my ability to always be there for my little girl, to not leave her father alone, and to enjoy every moment of our lives together.

It’s no longer a war with epilepsy, it’s a lasting relationship.  I’m not saying we are friends, but I am saying that I have developed a respectful understanding of epilepsy and a working relationship with it.

So why has it taken me so long to add to my blog?  Honestly?

Firstly, I have been truly enjoying being a mum, a doctoral student, and domestic goddess.  I haven’t been missing full-time work one little bit, but have been relishing doing bits and pieces of contract work.  I have been too busy enjoying this new adventure with epilepsy and selfishly, haven’t thought of the value of sharing my experiences.

And finally, I truly love reading positive stories of mothers succeeding, but I am getting increasingly frustrated by incredibly ignorant and judgmental attitudes of other women who clearly have no idea what it means to acknowledge the impact a hidden disability makes on our lives.  And don’t get me started on their opinions about IVF, or decisions people make about reproduction, termination or having more or any children.

In a society where we are dealing with sexism constantly, it would be nice if women could stand together in support of one another, irrespective of our individual beliefs, but empathetic to the individual choices we each need to make for our own and our family’s wellbeing.

So I’m putting my story out there.  I am a mum who has epilepsy.  I’ve already had to jump through the hurdles of IVF and now I’m learning that I am not invincible.  It is a hard pill to swallow, but I reassure myself that I am a better person, wife and mother because of it.

I know my daughter will grow up knowing how much she is loved.  And I want her to know that adversity is not the end of the world; that what doesn’t kill you, makes you stronger and more compassionate.

So I share this with you in the hope that perhaps on those down days you will remember this and continue on keeping on.

MJ

 

 

 

 

 

 

 

I am woman!

When I was at school, I had a fantastic English teacher whom I really admired.  What I loved the most was her feminism.  She truly believed that women could do anything; she believed it so much, she would reword the Bible with inclusive language.  Such was the culture within the All-Girls Catholic school I attended.

As a teenager and young adult, feminism dominated my very existence.  I needed to achieve the best marks, have a successful career, travel the world and buy my own house, car, designer clothing and handbags.  I suspect that my ‘daddy issues’ intensified my passion for equality.  I even took a Women’s Studies class at university which equated to three hours of men bashing each week; and I loved it! I worked in a hardware store and consistently had to remind the male clientele that my eyes were actually much higher than their gaze.  A close friend and I regularly engaged in passionate discussions about our need to complete a PhD thesis on the inaccuracy of original sin.  The snake that tempted Eve was actually the phallic symbol that to us, linked original sin to men.  The list went on…

As I grew older and wiser, my feminist attitude mellowed and my passion to succeed was no longer rooted in the feminist ideal.  Sadly, the last few years have highlighted increasing sexism the workplace.  The perception being that we are not assertive but bitches and our expression of emotion is simply a feminine weakness caused by hormones.  Even though research increasingly demonstrates how women and men process information differently, function differently, and express emotions differently, it does not prioritise one way over the other.

So how does this background information apply to me now?

Over the last few years it has become increasingly obvious to me that sexism is alive and well.  Despite each professional achievement I make, it is becoming more and more obvious that my femininity directly affects how people perceive my ability.  In fact, I am consistently being under-estimated.  As if I wasn’t already challenged to overcome the stigma of epilepsy, I now find myself dealing with the consequence of having a well rounded pair of breasts, blonde hair, blue eyes and a childish sense of humor!

Whilst I refuse to join the testosterone fuelled pissing contest that seems to dominate leadership, I have come to the conclusion that something needs to change.  Unless I am prepared to turn into that scary spinster stereotype, I am going to have to find other ways to ensure my skills and knowledge are valued as equally as other male colleagues in similar positions.

For now, let my actions be guided by the philosophy of Oprah Winfrey who said:

“Excellence is the best deterrent to racism and sexism.”

Look out world, for ‘I am woman, hear me roar’!

MJ

Pity versus Empowerment

I will preface this blog by saying that the following story was told by a staff member who does not know I have epilepsy.

I was listening to a story told by a fellow colleague the other day and felt ill.

We were talking about social media and the consequences of its ‘freedom of speech’. It was the story of a terrible incident that happened at a previous school. A student had a seizure in the playground. As well as poking her, a group of students filmed the whole grand mal seizure and posted it on social media to further humiliate and punish the victim. What made it so outrageous for my colleague, is that it could not be removed because of freedom of expression.

For those of us who are fortunate that drugs generally control our epilepsy, it highlighted our worst fears. Even though I have tried to think of an equivalent to explain it to non-seizure sufferers, I can’t decide on an experience in this world that involves the same, unexpected, total loss and control of mind and body.

We all know that people can be cruel. Our parents prepare us for it when they teach us that well-known rhyme, “sticks and stones may break my bones but names will never hurt me.”  ‘Say No to Bullying Day’ even educates people that being bystanders is equally as bad as being the bully.

It was my reaction to hearing the story rather than the event itself that inspired this blog post. Obviously I was a little shocked that my colleague didn’t know I have epilepsy. But given she has only been employed by the college for a few months and that I do not advertise my epilepsy; it made complete sense. Whilst I still feel no need to inform her, I was stunned by the attitude she had for a person with epilepsy.

It was sympathy and pity.

Despite all of her good intentions and passionate arguments against social media, I was riled. There is no doubt that the actions of onlookers was terrible and constitutes my worst nightmare; it just seems pointless to look on with pity.

What ever happened to empowerment? Instead of pity and sympathy, why not provide people with the inspiration to overcome adversity and live happy and fulfilled lives? As teachers, it seems really important that we do just this.

This isn’t the first time that pity got in the way of empowerment. In fact, I walked out of a talk on epilepsy in my early career. A student was newly diagnosed, and the boss thought it appropriate to educate staff. Essentially this was an appropriate reaction; instead, the medical presenter they employed did nothing but inspire fear and dread amongst staff.

What really bothered me was their refusal to let an excellent runner participate in the athletics carnival. How dare they? Yes, he might have a seizure whilst running, but he may not too. For crying out loud, I have had too many seizures in the shower! If I had drowned, I would not be writing this blog. Instead, I was well supervised and at most have been extremely embarrassed to wake up with ambulance personnel and family crowding around my naked body. Short of a few bruises and a messed-up tongue, I haven’t been significantly injured. In this instance they worried that he might dislocate his shoulder, or break a leg, or, or, or…

Give people appropriate information and choice and they will do what is best for them. Then empower them and be the support that they need.

If you have epilepsy, you just have a unique set of challenges to overcome. It doesn’t mean that you cannot. The problem is that too often this pity and ignorant fear mongering makes it impossible for people to feel empowered.

I’m one of the lucky ones I guess.

MJ

MJ

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

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