I was absolutely amazed when I woke up to hear the doctor tell me I’d never walk again. Not only was my mobility reduced so much but my ability to control other parts of my body was reduced too. My stomach muscles, bowels, bladder and most other things stopped listening to me; it took a long time and a lot of learning to get used to the new ways my body worked. When this happened, I didn’t really understand why I didn’t feel things the way I used to, especially with bowel movements. It was also a big challenge getting used to relying on someone else to help me with something like this, and it was hard not to feel a bit ashamed as well. In this society it can be pretty taboo to talk about bodily functions and it’s a shock to get used to needing assistance to go to the bathroom. It was hard to get used to the nurses rolling me over for bowel movements, especially since I had so little understanding of the actual body mechanics involved as well. I had so little knowledge at that time that I was experiencing all these new things and didn’t understand why.
When I finally recovered enough to go down to the Spinal Unit, that’s where I found out more about what I had lost and what I couldn’t control. I was frustrated and upset – I was a growing young man, passionate about my football, my physical abilities. It was greatly upsetting to have that mobility taken away and I didn’t cope very well with it at all. I asked “why me!” a lot, but I realised early on that that mindset wouldn’t really help me. Now this was my new reality, and I had to reset my way of thinking to handle such a drastic life change. For my situation, not only was the loss of the lower parts of my body very hard to handle, but I also had to cope with the loss of the use of my arms. Even something as simple as scratching my face or picking up something I wanted, it just wouldn’t happen. I won’t pretend I wasn’t extremely frustrated; it was hard to get used to relying on others 24/7 for everything including getting in and out of bed.
Once I returned home after rehabilitation, though, I almost missed the hospital in one way – I knew there would always be the nurses around to help me out with anything. But at home, with support workers only scheduled to turn up for a few hours each day; that was something else. It was okay when my wife was around – I could ask her to do things for me and obviously felt comfortable with sharing even the most intimate parts of my life with her. But when she went back to work, and I had to rely on strangers so support me in my day to day living, it was hard. Lying there waiting for the support workers to arrive is very stressful and lonely – they’re only here for a couple of hours at a time, twice a day, and there’s the long hours between shifts where I had to wait and get used to being alone. It was also stressful knowing that the support workers might even miss their shift and I would be unable to start my morning routine; that was very stressful and hard to get used to. Showers, bathroom, having breakfast and brushing my teeth all had to wait until set times, when the support workers could come to assist. Every morning, from getting up and getting showered to sitting up in my chair, it takes two hours and two support workers just to start my day. I miss being able to hop up and get ready with 5 minute showers, but it’s not like that for me anymore and I know I have to accept this new life for myself, and also the people that make it possible. My support workers start as strangers but I know I have to rely on them and so I always make a point of getting to know my staff – without them, I wouldn’t be able to get up in the morning and do what I want to do. I consider them part of my family and I appreciate them and the part they play in my life.
Even a strong man like me can tell you that it is hard to get used to the life change and to the daily routine – even I needed my faith in God to get me through everything and to adjust to the new way of living. But that’s what makes me a human being, and I know I’m still alive. Now I just appreciate every day I wake up. I’m still here and my family are all okay – that’s what makes my day and makes me do it all again tomorrow.
If you have anything you want to know about life living with spinal injury, please don’t hesitate to send me an email or contact me over Facebook. I’ll keep these posts updated with a new topic each fortnight.