Spinal Cord Injury Awareness Month – My Biggest Unseen Struggle

September is spinal cord injury awareness month and today, September 10, happens to mark two and half years since I suffered my injury and became all too aware of this condition. Seconds after I fell I can remember repeating to myself It’s just your legs. It’s just your legs. In that moment, I was comforted. Reminding myself that it was just my legs was reassuring me that I was going to be ok – I was going to survive and still be a mom and a wife and everything else that meant the most to me. I just would do it without walking. And frankly, I truly thought it was just my legs. It didn’t even cross my mind that there would be more to my injury than the obvious physical damage. As it turns out, the legs are just the beginning (and the easiest part).

While everyone’s injury is different, there is a long list of complications resulting from SCI that range from body temperature regulation to muscle spasticity to blood pressure issues and beyond. But the most difficult and devastating aspect of this injury for me (and for many) has been the loss of control over my bladder and bowels.The most personal facets of daily living became something that I could no longer control and – for a long time – couldn’t even deal with privately. In the beginning, my bladder would leak constantly resulting in a lot of laundry and showers. It was time consuming and frustrating. Eventually I discovered Botox which I’ve talked about in detail here and here. But even that’s not perfect and my bladder still acts up if an infection is on the horizon or during PMS. And sometimes it still leaks for no apparent reason at all. I will wear incontinence pads (aka diapers) if I don’t trust it because I don’t always have time to deal with bladder leaks in the moment. Today I went to lay down with my daughter on the couch to realize as soon as I’d transferred that I’d peed everywhere. So instead of spending time with my daughter I had to go into clean-up mode.

When it comes to my bladder, I have a sense of humour. There have been mornings where we have woken up and three out of the four beds in our house were peed in overnight. I can laugh at the ridiculousness of it all as we strip all the sheets and pile them in the laundry room. What I struggle more with is bowels. I’ve never talked much about it because I’m embarrassed. It is the one aspect of this injury that has almost taken the life out of me. Literally.

About 6 months after my injury I couldn’t get my bowels under control. I struggled to leave the house because the idea of having an accident weighed heavily on me. I hate that word, accident. It sounds so juvenile and makes me feel like an infant. Regardless, that’s what they are. I remember very clearly lining up the painkillers I had left. I certainly had enough hydromorphone in my possession to end the suffering. I dumped them out and stared at them. I sorted them by colour (green and orange) and even made patterns. I put them back and then dumped them out again. I did this a few days in a row before I told my husband and he hid them. We went from there.

It was the only time in my life I seriously contemplated ending it. And why? Because someone would judge me for something I have absolutely no control over? Because my friends wouldn’t want to be around me? Because my kids would be embarrassed? Because it was messy and awful and took forever to deal with? It was for some combination of all of that. For the lack of control and the ability it had to make me feel like a child. It was the lowest point of my life.

Thankfully with intervention and routine, everything has become much more predictable and is usually under control. And yet, I’m still at the mercy of my body. I’ve always had a sensitive stomach. I was diagnosed with irritable bowel syndrome before my injury and learned to avoid artificial sweeteners, seeds and anything else I determined to wreak havoc on my digestive system. But now, I lack the physical sensations that used to warn me when my intestines were about to explode. I pay very close attention to the signals I do get but sometimes they are so subtle that I miss them and I’m stuck dealing with the aftermath. It’s awful. I’m not going to try and tell you that it isn’t. I almost always have some sort of breakdown after it happens and am left with days of anxiety as I wonder if it’s going to happen again. I’m careful with what I eat but after an episode I find myself scrutinizing everything I’ve consumed. I’m terrified to start new medications because they always tend to mess with my digestive system. So, while I mostly feel confident and know my life is worth living, it is always on my mind.

Spinal cord injuries are multi-faceted, complicated and different for every single person. But bladder and bowels are one of the biggest unseen struggles that we deal with. Even when everything is working as it should, personal care is time consuming and a bit of a guessing game. I get by with humour and a lot of blind faith in my routines and my body. Sometimes it fails me and I get angry. Then we start again.

Knowing it is beyond my control helps me to make peace with it to a degree. The other thing I think of often is something my husband said in the very beginning of all of this. He told me that there will be things we have to get through so we can continue to live. That’s what this is – something to get through to get back to living. Because I am still me. I am still a mom and a wife and so many things that mean the most to me. But this injury is more than just my legs. And if I had to choose to walk again or have control of my bladder and bowels, there wouldn’t even be a question – me and my wheelchair would be quite happy together.