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

Life: What an adventure!

Let’s face it, life is not always fun and games.  Too often we get overly focused on what is negative in our world.  For me, it has been the struggle to fall pregnant, financial limitations that meant I could not afford IVF and the usual work issues.

Over the last three months I’ve learnt to alter this mindset.  I was fortunate to participate in the Positive Mind Body program for fertility. It is a group program that supports women and their partners through the emotional ups and downs of infertility.  It wasn’t just the meditation, breathing exercises and mindfulness strategies that helped, but the opportunity to talk with other intelligent, successful women in the same situation.  They are all very successful in their chosen field of work and all want to have children.  It isn’t that we have the exact same infertility diagnoses or experiences, but that we have issues full stop.  For once, nobody told me it would be alright, that I should just calm down or go on a holiday.

The last time I contributed to my blog was a particularly low point in my life.  The Doctor told me to book an MRI because of a suspected complication.  The MRI returned clear and I fell apart in the Doctor’s office.  As odd as my mindset was, I was prepared to have a new diagnosis and expected months of medical intervention to correct it.  The news simply threw my forward planning into disarray.  So we decided to plan for an IVF cycle.  That was over a month ago.

“When life gives you a thousand reasons to cry, show life that you have a thousand reasons to smile.” (Unknown Author, www.boardofwisdom.com)

But there was one awesome complication… You see, I had recently been awarded a scholarship to attend a world conference in education.  So I am off to Scotland next week on the 20th July!  Yes, a person with epilepsy on an international journey, all alone!  What an adventure.

I told my Doctor about my upcoming trip overseas and we decided to do an egg collection and freeze.  In fact, she explained that for me, freezing and transferring later would be more effective and would eliminate the high possibility of over stimulation. It also meant that I could travel without worrying about an early pregnancy and the possibility of miscarriage whilst I am away.

I leave next week and know that I have seven little possibilities in the freezer.  There are so many things I am thankful and excited for:

  • I am excited that despite my epilepsy I can travel alone.
  • I am thankful for the scholarship and am looking forward to meeting new people.
  • I am excited to pick up my very own hand-made set of bagpipes.
  • I can’t wait to use ph00-pmy new camera and take awesome shots of the Scottish Highlands, and
  • I’m looking forward to the Edinburgh Fringe Festival and the Military Tattoo.

On the 6th August I can return to Australia, apply what I learnt to my teaching, learn a new instrument, join a pipe band and to continue my journey to motherhood.

And although I know that my IVF journey is in it’s infancy, and that there will certainly be more disappointments before it is over, I can breath deeply and think about the thousand reasons I have to smile.

MJ

 

 

I’m Not Fine

7724418I recently read a blog post by Ragdollmummas titled Fine in Our Own Way that has resonated with my current existence. I’ve been doing exactly what she wrote about: I’ve been fine. To quote the article, ‘we may be curled up in the fetal position sobbing on the inside, but on the outside there is no other choice but to be fine and all good and to keep on keeping on.’

She is spot-on. We cannot expect that the people around us are able to understand the struggles we deal with; nor should be expect them to. Once again I have had to deal with an unsuccessful fertility attempt. It seemed that little bit more frustrating given the result came during the Easter Long weekend when we were supposed to be praising the risen Lord. In that moment, I can truthfully say that the hypocrisy of the celebration was not lost on me.

I think it was Tuesday evening when my man and I watched an episode from the SBS series, Secrets of the Brain. In one experiment, an audience was required to watch a film of animals in distress. One half of the audience was allowed to cry and express emotions whilst the other half of the audience was requested to ‘be fine’, hold it together and remain neutral. Once the film was over, all participants were required to hold a hand exerciser for as long as they could. Interestingly, the half of the audience who were allowed to express their emotions had the strength to hold the exerciser closed for the longest. Those who spent the film ‘being fine’ were unable to hold the hand-exerciser closed for any significant length of time. The conclusion was that the energy used by the brain to maintain neutrality was so draining that the body physically could not muster enough strength to hold a hand exerciser closed.

And that is the difficulty of having epilepsy and fertility issues. My family tends to understand the challenges of epilepsy. Even though they don’t have seizures, they struggle through the experience and memory of watching a seizure and caring for me afterwards. As a result, I know they feel as helpless as I often feel. Unfortunately, this empathy and understanding does not translate to infertility. My parents are already grandparents. My partner is supportive, but I am sure doesn’t feel the loss and failure that I do. I cried into his shoulder only this week and apologized because I don’t fail well. He of course told me that I am not a failure and hugged me that little bit more tightly. Whilst I am glad I can cry into his shoulder and enjoy the comfort of his arms around me, I can’t always see past the negative. Instead, I try to be fine on the outside.   And that is exhausting.

I’m glad I have PhD research to do because I am not sure how I would have survived this school holiday without the distraction. It seems that little bit worse the third time around. What ever happened to “third time lucky”?

In my not always believable attempt to be fine, I’ve immersed myself in books and articles as I complete research for my PhD; How to write a survey, defining the characteristics of a semi-structured interview, and delving into gender differences on the brain, adolescent education, music and leadership. Between doing this, I have cried, enjoyed nana naps, stayed home, cleaned and I suspect, had an anxiety attack. I’ve even developed strategies for talking with my mother. When I talk to her on the phone, I try really hard not to cry with volume; tears are fine so long as no noise registers. Keeping your voice at a neutral pitch is also helpful; too high and you sound anxious, too low and you sound like you are trying too hard. The trick is to breath normally. When your breath hitches, you can be guaranteed that anything you say next will come out as a sob.

They say that animals are perceptive. I am sure that those of you with pets would agree. My puppy Aria is supportive in just the way I need; she will curl up on my lap, sit quietly and become just that little bit cuddlier. There is no judgment or attempt to tell me that everything will be ok. I suspect this is what my human family tries to do, but without the same success. I also like that Aria cannot tell anyone I’m not fine, and her unconditional love means that she would never judge me.

My blog post this time is not to present a conclusion or solution. I just want to put it out there that sometimes we are not ok, and that is fine. At least for me, this blog is a way of expressing what I am feeling and to let other people know that they are not the only ones.

I am hoping this post will help dig me out of the ditch I currently find myself in.

Read the post by Ragdollmummas here:

https://ragdollmummas.wordpress.com/2016/03/25/fine-in-our-own-way/

 

 

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

Dear God, I have epilepsy. Isn’t that enough?

“Dear God, I have epilepsy. Isn’t that enough?”

That was my gripe yesterday.   I even tried to express how I felt in a blog post, but got tears instead of words.   There is so much to say; so much I planned to say and have not been able to until now. So here goes…

They say that the universe only requests of you what you can handle. If that is the case, then apparently I am super woman!

Epilepsy aside, the last forty-eight hours have been tough. My partner and I recently underwent an IUI in order to conceive our first (and likely only) child. You see, in addition to epilepsy I have endometriosis and PCOS.

Despite only a 10% chance of success, I remained positive and hoped for the best. The procedure was booked suddenly with little warning for both Mr Man and myself. It was exciting and completely terrifying at the same time. In the process, I learnt that the progesterone I injected into my belly made me suffer symptoms of pregnancy including morning, or more appropriately ‘whenever’ sickness. I joked with Mr Man, that if this is pregnancy, I will need vomit bags in my car!

I suffered with a smile for two weeks knowing that I had to wait until the drugs were out of my system before testing. Well, this week has gone so slow! I kept thinking it was like the night before Christmas when I was a child. Do you remember how long it seemed before you were allowed to get up and see what Santa had brought? I was reminded this week.

Lets just say that I didn’t need to do a pregnancy test; that Santa left no gift. I was devastated. I’ve never before felt this incredible lack of control or sense of failure. It was a very overwhelming feeling and something new for me.

We are all allowed them. You know those “woe is me” moments? When everything that happens to you seems cruelly unfair. You question humanity, God, and all that is good in your life. And finally, you turn on the good luck of others in a jealous and unjustified rant.

My first thought is always of those people who fall pregnant accidentally.

“Oops! What are we going to do now?”

Like my brother, who despite being a very nasty human being, is able to father a child, and restrict my own Mother (the child’s Nan) from visiting.

And then there is that really horrible jealousy and anger you feel towards generally lovely people who are having babies to add to their already beautiful family or those who are having their first child because they decided that they’d try. Worse even was the anger I experienced when a work colleague with epilepsy announced her pregnancy. It frustrated me that “she didn’t have to change drugs and not drive for four months,” and that “it was so easy for her!”

I admit it. For 24 hours I was inconsolable and felt that the universe was against me. After all, they say that the good finish last. When I apologized to Mr Man for my unusually negative attitude and dodgy body, he simply hugged me, told me that he loved me and said that it was ok to feel.

Perhaps it was the rant against humanity that helped, because the tears quickly dried up. I needed to regain some control and overcome that feeling of helplessness. My only option was to ring the specialist and book in to do this again. That is all I can do for now.

It is funny how I’m not feeling the loss quite so deeply today. I do feel numb and a little irritated with my body and the universe. I’m also frustrated that it is always me who has to remain strong. It seems the number one priority for epilepsy is to limit stress levels and avoid anything that can trigger a seizure. Sometimes it seems so unfair. Why can’t I just fall apart for a few days and not be the one in control?

Simple answer is twofold:

  1.  It is useless and a time waster.  We only live once.  And more to the point,
  2. “You can’t, so just suck it up Honey!”

Instead I raise my glass of sparkling water and say, “here’s to sucking it up and getting on with life!”

In the words of PINK:

 Pretty, pretty please, don’t you ever, ever feel, like you’re less than, less than perfect!

CHEERS!

MJ

Image from: http://sd.keepcalm-o-matic.co.uk/i/keep-calm-life-s-tough-get-over-it-suck-it-up.png

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

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