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