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Author's Name: Volunteer Writer
Date: Wed 27 May 2020

Starting Over

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One day I was out and about in the car for work activities with a colleague and friend. It was a bit of a task for him. After I transfer from my wheelchair to the passenger seat he would have to pack my chair into the boot, then after finding a somewhat wheelchair accessible place to park at each of our stops, he would then have to go through the reverse process as I waited. Or, if that stop was too difficult I would sit in the car and wait for him to get our work tasks at that location done. As our day progressed and he was experiencing more of what traveling in a wheelchair can be like and the extra time it takes to do something simple, he asked, “Would being able to walk again be what you would want to change the most about being a para?”

“No. My top choice would be having control of my bladder and bowels back. And a big proportion of the spinal cord injury community would give you the same answer.”

Taken back by my answer, the conversation then took a massive, yet still respectful, honest and educational, left-hand turn…

If the intimate details of learning how to pee again as a woman with a spinal cord injury is too much information for you or something which you believe should remain private – STOP READING NOW! Because this story is going there! I respect your views. I also respect those who learn from open and honest awareness education. The choice is yours.

The immediate reality of life with a spinal cord injury felt like being hit by a quick succession of big waves at a surf beach. The weird feeling of not feeling half your body. Will I walk again? How do I use this wheelchair? Working out how to wrangle your strange legs into pants and socks. How to balance on your own while showering independently and so on. After righting yourself from one dunking wave and feeling like you’ve got a handle on this whole surf beach thing now, you turn around just in time to be whacked by the next big dunker. That’s how it can feel to be a new spinal cord injury patient.

One day the nurses decided it was time that I began my lessons in learning to pee by myself. Damage to your nerve conducting superhighway, the spinal cord, also disrupts messages going to and from the bladder. Receptors in the bladder can no longer send a message to the brain telling it that it’s full and needs to be emptied, and the brain can no longer send a message to the different bladder muscles telling them to activate and therefore empty the bladder. Up until this point, I had an indwelling Foley catheter connected to a leg bag. This type of catheter accesses the bladder through the urethra and once inside, a balloon on the tip is inflated to prevent it coming back out. This set up stays in place 24/7, constantly draining urine into a bag, which is then emptied into a toilet when full.

The indwelling catheter would not be the ideal long-term situation for me medically and lifestyle-wise. So, before being allowed home, I was told that I would have to learn how to pee by myself, using a technique I had never heard of before – intermittent catheterization – and I was handed a bunch of straw-looking things in sterile packaging and a mirror. Que the next dumper wave at that surf beach… And this was going to be a big one…

Of course, it was my favourite nurse who had the best rapport with me that got the job as Toilet Training Round 2 teacher, because things were about to get intimate, messy and frustrating quickly! She put my bed in a very reclined position, strapped a small mirror to the inside of my thigh and told me to find my urethra. Now I don’t know how much you know about female anatomy, but if you think back to sex education class, we aren’t going up the path of sex, where tampons go or how babies get out. The female urethra is a whole other pathway. Confused? Ask Google. Totally embarrassed if you’re a female and didn’t know that? Don’t be – I’ve chatted with quite a number of females in my time who have famously replied in shock with, “What?! We have two holes?!”

We will have a laugh about it, but yes, we girls do. I was definitely not laughing though on that day when I was told to find my urethra. It’s small, it can be quite well hidden, and after what seemed an eternity of looking at an up-close reflection of myself like I’d never seen before and having hands in my exposed private area, I finally got that straw-looking catheter in the right place and out flowed urine, not quite as cleanly as it can, therefore, more mess and frustration. After over an hour of this, I was exhausted, beat, in need of a shower and a new set of pretty much everything, but I had done it – my first pee, almost on my own.

I laid my head back down on the pillow and sobbed tears of frustrated accomplishment and frustrated realization. I would have to do this at least 4-6 times a day, every day, for the rest of my life. My mind was exploding with trying to compute how in my post-rehab hospital life I’d be able to find somewhere to lie down for an hour while I go about emptying my bladder, and that somewhere should also have access to a shower and new clothes, AND I’d need to repeat that process several a day. My brain calculations were telling me that the time I took to empty my bladder, plus the time it takes me to shower, plus the time it takes me to dress myself roughly equalled the time it would be for my next bladder emptying.

My special nurse must have guessed what was going on in my head from the defeated look on my face and wide eyes. “It will get easier – I promise.” She told me that everything I had known had been thrown out the window and that it would never come back through the window in the same shape. Because of one event, life was never going to be the same again. But that didn’t mean that it was always going to be so hard and feel as foreign as it had been for me recently. In time, I would adapt – I would learn a new way of normal, and if I chose to, I could go back to living a fulfilling life. She promised me that what was foreign now would become normal through adjusting, adapting and most of all, time.

Part of me wishes that my future self could have appeared at that moment to reassure me that my nurse was right. I would adapt. I would make a new normal. And I would be happy. Best of all – I would be cathing sitting up, catheter in and out in two minutes flat, and back to my day, usually without the need for a new set of clothes, and all without a second thought.

A big part of me is glad that my future self couldn’t appear though, because she would have robbed me of the life experience and life lessons that I learned along the way.

Who would have thought that learning to pee again would have prepared me for taking on a coronavirus world with optimism? Seemingly unrelated, I can assure you that they are not. We’ve experienced this global pandemic throwing everything out the window, and we’re not sure how long it’s going to be before parts of life start climbing back through the window, nor what they are going to look like. We’ve experienced the shock, the frustration, the realization, and the thoughts of how this foreign way of living now could be an impossible forever.

Learning to pee again has taught me that humans are capable of adapting to the seemingly impossible, turning them into new and manageable normal. The process at the start wasn’t the same as the process down the track. The process down the track became part of daily life that I didn’t give a second thought to but just did out of routine and normality.

In all that life as a person with a disability has taught me, I can assure you with everything I’ve got that we can adapt! I adapt through time, patience, kindness to myself, trial-error-trial-again experimenting, and reaching out to my peers. All five of these have been important, but I cannot stress how vital reaching out to my peers is. Just a few days ago myself and two of my fellow injured mates from around the world were laughing at our recent spinal cord caused poo accidents. I definitely can’t promise you that adapting to a new normal will ever reach a stage where it’s nothing but easy, but I can promise you that your mates in the same boat will be able to laugh and cry through those “moments” with you though. So find yourself a tribe!

I repeat again – you can adapt! The seemingly impossible forever can become an everyday manageable normal. Take it from the person who learned how to pee again.

Now if only, as I sit here writing this, my next future self would appear and assure me that one day I would finally work out how to cath while on a yacht at sea, especially when beating upwind or in a sea state, without getting myself seasick, very bruised and in a bit of a mess, I would be very appreciative! Because take it from me, using your hands to do a catheter instead of holding onto the boat, and having your head looking down at your lady bits makes for a rather large challenge for me that over 24 months in practice, I’m still striving to win at. The rather large collection of hilarious peeing at sea stories that come with it can be for another time if your modesty is up for it.

As always, if you have a question or want some help and don’t know where to start, you can always start by reaching out via our contact page or on our social media.

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