What do you do when you don’t know how to pee anymore?

Posted on September 5, 2011


fringe freaks

My friend is sick.  Her brain is broken and she exists on a plane of suffering that you and I cannot imagine. 

Simply put, her brain can’t send messages back and forth between left and right lobes like yours and mine can.

Information gets trapped or doesn’t compute and the result is torturous.  

She has seizures, she needs constant care and her brain perceives pain that isn’t actually there.  She can’t watch TV or listen to music and she finds procedural things difficult.  She also suffers with OCD and has memory loss as a result of ill-advised electroshock therapy.  

She has had stints in the Adelaide Clinic and endured the degrading stigma of mental illness while watching many friends fade away over the years because they haven’t been able to understand what life is like when your brain is your own worst enemy.

Bogus ‘faith healers’  have tried to help and only harmed, many doctors have done the same.  A few important and smart neuro-psychiatrists have taken her on but they too are largely baffled by her condition.

Despite this, she remains brilliant, intelligent, hilarious and ridiculously talented. 

She bears her burden with a dignity that floors me, which is why I want to tell her story.

Her mother, also, has had to sacrifice to provide full time care for her daughter by herself.  She is a true soldier and one of the world’s many unsung heroes.

One of the things my friend often talks about is how hard it is to try and explain what life is like for her.  People don’t understand and eventually withdraw because they don’t know how to stay alongside someone who has a broken brain. 

I’m still figuring it out myself, to be honest.

But we are in community for a reason.  So when she doesn’t have energy to believe, or to hope or trust in a good God, you and I can do it for her.

Here is an excerpt from an email she sent me last week.  It is a little glimpse into what mental illness is like on the other side…

The email

The occasions I see friends are so rare. I forget how to socialise. I see Mum and I see doctors. That’s it.

I am going to see Stacey for her 31st tonight, and I really feel uncomfortable going although I’ve known her for 18 years.

I have painfully little in common with ‘normal’ people.

I don’t have a schedule, I don’t go to work, I don’t get tired from doing stuff because I can’t do stuff, I don’t drive, I am unable to be in rooms with more than a couple of people talking, others generally don’t know what 24/7/365 high beam suffering is like.

I’ve been in it so long that I have such a different worldview and I am on a totally different journey.

It’s hard to talk to people. I understand how my cousin Margie feels now, smashed up and disabled from five years of brain cancer.

She went from talking about everything to being laid up in a bed, unable to think properly, seizure-ridden and no independence… and what power she had was entirely channelled to her journey and this was evident in the way she spoke and her inability relate to normality. I understand why now.

Insidious illnesses that impede functioning on every level just break you down like nothing else. Seriously, hell can’t possibly be worse and I’m not exaggerating. If it is, then God is a very strange being to create it to put people there.

The entire mission of life becomes ‘survival’.

You can’t spend what little energy you have talking about or doing what become ‘frivolous things’. I have realised this is part of the survival mechanism in action. So socialising becomes terribly, terribly hard.

You don’t want it to be – you’d give anything to be part of it but you simply are not able to.

When the illness is so pervasive – like Margie with a chunk of her brain removed, or me with this frickin’ illness – you can’t ‘live’ AROUND it, so you just spend every day barely surviving. No room for anything else.

I often find myself crying after seeing friends just from being around their ‘normality’ and wellness, because it is completely out of my reach and utterly heartbreaking.

In my experience, God is not the God represented in the bible. That God does wonderful things. I can’t hang onto those promises anymore, because I no longer have any traction on those promises.

They exist totally incongruent to my experience. Totally. This isn’t pride talking, it’s absolute devastation that he hasn’t been real for me.

I feel like my Dad has left all over again and I have no sense of being fathered.

Whether that will change, I don’t know. I want it to. I would love God to say “Ok, you don’t have to suffer anymore. You did it. I was there all along. Now you have no chains. Live free!” but I am unable to hope in things that don’t reciprocate anymore.

I gave God everything I had, but he couldn’t even just make my existence, ‘a life’, even a humble one. Any hope gets squashed every time it rises up in me anyway.

I wanted to be a wife, and a mother, and all these things. I still want those things deep down.

Now I just want to be able to wee normally.

The system that controls the signals, muscles and urges to urinate have been interrupted/damaged…the docs don’t know.

Urinating is like defecating in terms of effort.

I also don’t have the urge to wee anymore. I know when my bladder is full because my shape changes and I feel more uncomfortable than usual, so I go and heave some urine out, but I can never empty my bladder.

So old urine gathers and gathers in there, and then I get an infection.

Only I am not able to take antibiotics now as they send my head off into excruciating pain/crazy/nightmare land because they interfere with other drugs.

So I stick out the infections old school style.

But I am not allowed to even take Ural or any alkaliniser.

Because it interacts with a drug I am on.

Now one of docs has to decide if I need to be catheterized.

I would give anything to have illness of something else other than the brain/mind.

No legs or arms? Awesome. I’d go to the Olympics.