Dystopia. Fighting OCD.


 stokpic.com

I have been reading a lot of dystopian novels lately in a valiant attempt to release my inner Katniss. However, if you were actually in my head, then you would know that she has always been in there.

I have always felt righteousness indignation about inequality and unfairness; I have a disabled sister, it sort of comes with the territory. I learnt to fight her bullies at a young age, but strangely was never able to fight my own.

Have you ever been bullied?

When you are persistently attacked day in , day out, you learn not to fight but to accept. You learn to avoid, to hide, to merge and to disappear but not to fight. You lurk in the shadows and try to slip into the night, but you don’t fight.

And then, one day, you do.

You fight when you become angry with the norm. You fight when you can no longer reason away the nagging doubts. You fight when you finally realise that their version of life, with all its idiosyncratic rules, does not have to be your own.

Who determines what way of life is correct? Who decides how we shall conduct ourselves at and what rules we shall follow? Who dictates how our children shall be educated and what topics are allowed for discussion in polite company? How on earth did these choices get made? To keep the status quo and avoid rebellion of course.

But when the bullied stop hiding, when they finally decide that enough is enough, you had better watch out, because their righteous anger will burn you like scalding water and if you have been on the wrong side of the line, if you have not defended the weak and if you were not courageous enough to support them then…

I will probably just continue to be your friend, because life is too short.

I am Katniss, of course I am, but the one thing that I have learnt since having cancer, is that we should not judge each other’s contributions in this world.

Katniss may be in us all, but the circumstances still have to produce the fight. Unless you have lived with adversity, you can’t really have empathy for the weak. Therefore you can’t really feel that anger that Katniss felt. Not really. So I will forgive you instead.

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Empathy, Coffee and OCD




Photo courtesy of Ed Gregory at: stokpic.com

When my Dad heard that I had OCD, he said very little at the time. I left his house wondering if telling him had been the right thing to do, or just a foolish act of conscience. I guess what I wanted him to know was that some of my bizarre behaviours were not just quirks, but the results of a debilitating condition.

I love my Dad, I really love him. He is funny at irreverent times and serious in comical moments. He has an answer for any question that I might ask and delivers a punchline with perfect rhythm and timing. He has a funny walk that he only shares with me and my sister and sings like a nightingale when the whiskey has loosened his vocal chords.

However, when I told him about OCD he did not have an answer for me or a solution. I felt a little lost.

Some days later, I accidentally read some notes that my Dad had left next to his i-pad. They were about OCD. The notes were detailed and were clearly well researched. There were columns on obsessions and compulsions, facts and statistics about incidence rates, help line numbers and website addresses. At the bottom of the page were two words written in bold. One of which was underlined and etched over several times for emphasis. That word was:

Empathy

My Dad knew me, but he still felt the need to write that word, because OCD was a condition that he did not understand or have all the answers to. However, not having the answer did not flaw him, he just reminded himself that to show empathy was a powerful, compassionate and necessary action.

The other word that he wrote in large letters on the crisp, white page was:

Coffee

However, after the mitral valve diagnosis, he might have to have a decaf tea instead!

For my Dad:

http://youtu.be/_PDlGUdDF8Y

Birth and OCD


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Today I sideways hugged my son’s godmother, we weren’t trying a new way of being affectionate, she is 9 months pregnant and I have put on weight. Again. We hugged sideways because we could not actually hug forwards, as our stomachs were protruding too much and our arms would not reach around each others’ middles!

However, after the hug I felt very emotional. Today is her due date and soon enough she will have a new life to love, nurture and protect. As much as I was overjoyed for her, I felt my eyes well up thinking that cancer and OCD had robbed me of the chance to have a second child.

I am not surprised that OCD took a grip on my life around pregnancy. I had a polyhydramnios birth- too much amniotic fluid in the womb. Living with this knowledge in the weeks leading up to an emergency c-section, utterly terrified me. I was told that I had to stay in hospital pre delivery for a few weeks and that I had to be closely monitored. If I gave birth too quickly, then the cord would wrap itself around my baby’s neck and cause suffocation. When my waters broke I was also advised what to do. I would need to crouch down on all fours immediately, no matter where I was, to prevent foetal asphyxiation. I imagined all the worst places to give birth on a regular basis and planned what to do in each scenario, down to the last detail. I was mortified, I was frightened and I above all I wanted my baby to be safe. Any mother would have felt the same, the difference being the severity and repetition of my thoughts.

All mothers have fears. But a mother with OCD has terrors. I constantly imagined my child dying over and over again. At 20 weeks I knew that he was a boy and had even named him. I read to him even in the womb, and our bond was as strong at 9 months as it is today, but I could not enjoy those final weeks because I was scared to death of losing him and/or dying myself. These were OCD thoughts. Vivid. Disturbing. But not real. Not totally anyway. They were based on a real scenario, but fear had exaggerated their dominance in my mind.

So yes I am overjoyed that soon I will have a little baby to hold, a tiny sweet smelling cheek to kiss and a warm hand to touch. It’s just that birth brings back memories for me that I wish were not so sad.

Stuck In A Moment You Can’t Get Out Of with OCD


Today I did something surprising, I told a neighbour that I have OCD, I told her why I am stuck in a moment that I can’t get out of.

http://youtu.be/Xqrn2q3WCS8

I wanted to explain why I wasn’t working.

Usually my default answer is that I am suffering from extreme tiredness, which is true, but it is not the whole truth. You could say that I didn’t want to hide any more, that I was tired of pretending that everything was fine and that I wanted a different moment.

My neighbour’s reaction to my disclosure was unbelievably positive; even asking if she could read my blog. She made me feel as though I had simply told her that I had twisted my ankle or had toothache. I was so grateful to her.

Until recently, I have kept this blog from anyone who knows me in person. I was happy to share my thoughts with thousands of people in the blogosphere, but people that I knew? Are you kidding? Then I had a change of heart. I sent the link to a few people that I really trusted, or who were at least writing themselves; it was a heart stopping moment.

Previously when I have tried to explain what OCD was like, I have made light of it or even suggested that it was simply perfectionism. My comments made OCD sound easy to live with, not impossible. It is no wonder that stereotypes abound, when even I could not explain what OCD was really like.

However, as honest as I have been in this blog, there is still an aspect of my OCD that I have promised not to discuss. That aspect of my condition has been hell on earth to live with and not just for me, but for those that I love as well. OCD can have a devastating and draining effect on friends and family members, who have to deal with the associated anxiety and panic attacks. I am ashamed of my behaviour when I panic. Terror is destructive and the fallout is often catastrophic; OCD is an unforgiving master.

So yes, I have been a little more honest about having OCD, but I can never give others back the time that they have lost to my condition. If you think that you may have OCD you must tell someone before you too are stuck in a moment that you can’t get out of. I don’t wish that on anyone.

Tidal Waves, Skateboarders and OCD Honeymoons 




Picture courtesy of Ed Gregory at: stokpic.com

You may remember this post about a small child:

‘Each week the little girl devoured a story about the lost city of Atlantis. In her mind’s eye she became a child who dwelled within the city’s limits. Dramatic images entwined themselves into her imagination. When she was there she felt safe. She felt at home.

However, the trouble with stories is that unless you cheat and read the final page, the end can come as quite a shock. The girl was not expecting an unhappy ending. She had previously read tales of wardrobes leading to snowy realms and children who believed that they could save a frozen world from evil. But in this tale of Atlantis it did not end well.

As the horrific image of the tidal wave thundered into view, something in the small child’s mind faltered and stuck and the fear of the wave stayed with her forever, even on her honeymoon. But that is another story of an older girl who no longer knew how to stop the tidal flow of fear.’ 

Well, when the girl grew up she fell in love.

OCD did not deprive her of love, if anything, she felt that emotion too much, but that’s another story.

The skater boy that she fell in love with and married had a dream to skate in San Francisco. San Francisco was a skateboarder’s Mecca. Blocks of pure marble lined the ocean sidewalks and plazas bustled with coffee drinkers viewing the nifty ollies and breathtaking 360s of the skater folk.

Unfortunately for the girl, there was an earthquake during their honeymoon. Too many images of Atlantis flooded her mind and from that moment on she waited for the tsunami to hit the city. She knew somewhere in her logical brain that this was not going to happen, but she wasn’t certain.

If you know anything about OCD, then you will realise by now that the need for certainty is necessary. The less something is certain, the more the OCD anxiety grows.

Each night the girl lay awake whilst her partner slumbered next to her. She was completely and utterly terrified. The water was coming. The water was coming. She could hear the water coming.

The glass windows would not hold back the force of the flow. They would be crushed by glass and the force of the waves. They were going to die. They were going to die next to each other and the water, the water would inflate their bodies and create monsters from their love.

If they died, who would tell her parents? What would they do without her? How would her sister cope when her parents died? How were her parents going to die? Would it be painful? Who would console her sister?

How could they save themselves?

Were they high up enough for the water to miss their window?

Maybe the building would crumble and the masonry would crush them instead?

The water, she could hear the water.

Her mind was flooded with fear.

That is how my OCD loop works. Uncertainty begets fear. Fear begets anxiety. Anxiety begets more fear. Breaking the OCD loop is essential to recovery.

http://youtu.be/Y-VwSUfPJco

Eaten by OCD


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Some people devour love, others life but,
OCD devours me.
I wear it on my body
Like a giant squawking albatross.
A permanent symbol of guilt,
acknowledging to the world
that I am a fraud;
laden with lies and deceit.
OCD chases me in my
dreams and hunts me down,
hurling me kicking and screaming to the floor.
It forces itself upon me and
enters my body without
permission. I do not put it there.
OCD is the perpetrator
and I am just the victim of
his desires and hatred.
I try to defend myself against
him, but he always overwhelms
and overpowers me.
He beats me down and
circles around me, until I
cry out ‘No more’ and
succumb to his will.
Defeated and belittled I fall
and OCD soars away;
leaving me to face the jeering crowds alone.
They do not believe that OCD
was here uninvited.
They think I have control.
But I am weak.
I wear him over me.
Heavy.
Ugly.
Dead.

Tattoos and OCD


Recently I finished reading the novel ‘In the Skin of a Lion’, by Michael Ondaajte. His prose made me want to absorb the OCD fears that I hear in my head and wear them on my skin, for all to see.

Sometimes I feel that having OCD is like having a tattoo. Frequently the tattoo must be hidden from the world, because it offends the cultural norms of society.

However, you can choose to have a tattoo; to rebel. But I did not choose to have OCD. It chose me.


The descent of words

I hang on to your lines like I would a suspension wire.
Your pronouns and verbs
are the only things
preventing me from plummeting to the
ground.
My hands are scarred from holding on so tightly
rubbed raw with friction-
Or should I say fiction?
This story is just that.
A flimsy cling filmed existence,
Translucent. Serrated. Stretched.
I read us into the myriad of myths that absorb me.
‘Hey Patrick!’
‘Everyone has to scratch on walls somewhere.’
But My nails break on the bricks as I slide down them in free fall from the wire.
I pass your window during my descent but
You lock the latch and retreat behind the glass.
Not noticing or
choosing not to notice
my flailing arms.
The ground is approaching fast.
My words tumble and contort as they try to find their way back up to you.

http://www.bloomsbury.com/author/michael-ondaatje