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

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