PBF commissioned Aesop Media to travel the country and document the stories behind 10 people living with a spinal cord injury, and the incidents that changed their lives forever. Little did I know how this project would come to, not only inform my impression, but internalise the human experience of spinal injury for me.
If you wriggle your toes right now, what is it that you notice? What do you feel? Socks in shoes? Carpet? A wooden floor? Okay, now take a really deep breath and pay attention to the feeling…the tingle down the back of your neck as your breath fades to a calm, relaxed, full bodied sense of relief and satisfaction.
It feels REALLY GOOD to just breathe deeply now and again doesn’t it? Now see if you can reproduce that feeling by just remembering it? Can you do it? Can you think about taking a nice deep breath (and recall the good feeling it brings) without actually taking one? Could you do it even for just one minute? Try it and you’ll find that not only can you NOT recall it to any degree that is really satisfying, but you will quickly become short of breath and quite uncomfortable. Now imagine not being able to enjoy the simple pleasure of taking a really long and deep breath again for the rest of your life.
The thought experiment is excruciating, but for nearly all of the spinal cases we listened to this is a reality, and yet, it is just a small part of an even greater reality for these people. From the loss of bladder, bowel and sexual function to the difficulties associated with the loss of mobility and independence. 7 of the 10 either divorced or separated from the partners they were with at the time of their injuries (a statistic, sadly reflected in the greater population of spinal injury cases). All of them, without exception expressed how “Not Walking” was the least of their problems and that if they could regain only one thing they had lost, it would be bowel control. It is hard to listen to their stories of loss and regret. Even harder to come away with anything short of great admiration and respect for their resolve to take advantage of the life they have, as again sadly many do not. It is confronting to break through their strength and discover their real fears in the simplest of day to day situations. But more than anything, it was a challenging question to ask myself – “How would I cope if it happened to me?”
Surprisingly, it was not the stories of devastating loss of major functions and independence that moved me the most during these interviews. How could they? How could I truly understand, for example, the loss of bladder & bowel function until one day I suddenly wet myself (or worse) in the middle of a shopping centre? How could I even come close to understanding the phantom pain many of these people suffer unless I was periodically stabbed in the legs with a knife or cattle prodded in the back for hours, even days at a time? No, there was no way I could really understand that depth of impact physically and as a film maker and documentarian I felt deeply “disabled” by this inability to connect physically and emotionally to their stories. It was not until I sat down with a quadriplegic named Joanna and listened to her tale, that I was able to at least internalise some sense of loss for just a moment and it devastated me deeply.
Much of the art of conversation and interviews is about taking someone to a space where they feel understood and unjudged. For the most part this is a delicate balance of empathy, genuine curiosity but also a little bit of distance. I needed to show Joanna that I was interested in what she had to say but at the same time allow for a certain distance that gives me enough space to confine my own ego with rationality. It wasn’t until late in the interview with Joanna when she was starting to talk about how much the spinal injury had impacted her family that I began to feel agitated and uncomfortable. I found myself feeling closed off from my normal store of calmness and space and I couldn’t work out why. I love listening to people tell stories. They laugh, they cry, they honour me by agreeing to “live again” the moments that make them who they are and as a natural part of this engagement, I will find myself unconsciously mirroring them. Most of our interviewees had normal or close to normal upper body movement so my natural mimicking was easy, but, Joanna was a C3 quadriplegic. She had broken her neck after trying to climb a fence while intoxicated one night. She could talk and move her head but was completely confined to a motorised wheelchair which she could control with her mouth. Mirroring her physically was not on the cards except for one thing…her breathing.
She was taking shallow, controlled but confined breaths and pacing her sentences to fit within each breath if she could…and so was I. This is not normal for me and when I realised what was making me so upset it hit me hard. One thing people regularly say about me is how “calm” I am. I did not realise until that moment how much my calmness depended on my ability to control my breathing. When Joanna then confirmed that taking a deep breath was indeed one of the things she missed, I was forced to whole-heartedly agree. I managed to rally myself and resume my normal breathing and engagement of Joanna’s tragic story but at the very end, when I came to thank her I had to pause and calm myself…by taking a deep, deep breath. Something I realised straight away that Joanna could not do. The immediate mix of relief, shame and guilt choked my breath away and I began to cry.
I have lived the great majority of my life in a way that is profoundly “unaware” of the fragile nature of many things I take for granted. Having the chance to meet and talk with people like Joanna has greatly improved my awareness of the reality of living with spinal injury but for me, has also greatly swelled my gratitude for my life without it. It is a life where I don’t have to feel a burden to my loved ones. It is a life where I can drop what I’m doing at a moment’s notice and just go fishing if the urge takes me. It is a life where I can breathe deeply.
Hing Ang (Senior Producer at Aesop Media)