We have an insidious, unspoken problem endemic to our healthcare and rehabilitation system in New Zealand. It is regarding the value we place on people, particularly people with a spinal cord injury (SCI). We don't seem to be addressing the psychological trauma of having an injury adequately I believe. Research has pointed out repeatedly that having a SCI is one of the most traumatic occurrences a person can go through in their life. Yet despite this, the primary goal of rehabilitation is to maximize physical functioning - to get the person as independent as possible.
Broken minds are not easily fixed and a few visits to a psychologist at the SCI unit during the acute phase of a SCI is not enough to give people the skills to manage what has been broken inside. This injury affects predominantly young people, people who don’t have the coping mechanisms to confront that scale of trauma, people who have grown up in a world where image is everything - suddenly, they lose it all. Their sense of identity is gone in a matter of seconds and they are left with a paralysed body that will be full of negative stereotypes of what it now means to be classified as ‘disabled’.
We work so hard in the SCI unit to gain function, yet if caught crying or outwardly showing grief for the loss that has occurred, it is written down in our notes. It becomes a problem. Comments such as ‘we have noticed you seem depressed’ are uttered by health professionals and you feel shame. Shame for not coping, shame for not being strong enough to ignore the sick feeling in the pit of your stomach that is screaming ‘but I’m no longer me!’.
‘I can be having the worst day but if I see the psychologist walking down that corridor, I put on a big smile so he thinks I’m ok…’ - Comment made by a participant of a study undertaken in 2011 for my Masters thesis ‘Experiences of Intimacy and Relationship Maintenance in Acute Spinal Cord Injury Rehabilitation: An Interpretative Phenomenological Analysis’.
Most people with this injury will slap on a fake smile and through gritted teeth will tell the health professionals they feel fine. And there are visible sighs of relief from the health professionals. We don’t want to be ‘difficult patients’ - the label given to those who aren’t coping with the trauma. You are discharged once physically fit enough to return home. And once home, you sit in front of the mirror, in your wheelchair and you hate what you see. You are no longer a person, but a person with a disability.
So my worry is this: Why are health professionals not addressing the issue of self-esteem and grief? Why are health professionals so scared to acknowledge the loss? How can a 17 year old girl be sent home, hating her new body. Being so embarrassed and humiliated by her new sense of self it takes eight years to finally have the courage to go out in public alone? And takes over 20 years to finally look herself in the mirror and like what she sees?
I’ve been on a journey this past year. I’ve changed my way of thinking, something I never thought was possible. And how did I do it? I liken it to a mixture of ingredients. I was allowed to sleep for the first time in 22 years. I wasn’t subjected to a caustic and hostile work environment where the simple act of going to the toilet became a 2 year battle with management to have a toilet accessible by wheelchair. I had time to talk to other women through social media. By posting simple photos of myself in my wheelchair and receiving messages from other women with this injury saying they felt that simply by seeing my image, it had given them the courage to wear clothes they wanted to wear. To show off their bodies and feel good about themselves. By telling my story on social media to the thousands of people following me, the good, the bad, and the feeling of hope I now feel about my future, and how that has inadvertently touched so many others. A result I wasn’t expecting but it has opened my eye to the power of an image. They call me a role model by living my life, but I’m just sharing my life, as are others like me, and together, we are all helping each other deal with feeling different. And all from a simple image posted online. It seems the saying ‘an image can say a thousand words’ is true.
If only I could go back in time and share my new found sense of self with that scared, broken, 17 year old girl I once was. If I could show her images of women living their lives, accepting and acknowledging the pain but reenvisaging it as a strength. We were given new bodies on the day of our accidents. And they aren’t wrong or damaged bodies, they aren’t bodies to be ashamed of, they are just different… and that’s ok. So we take a look at ourselves and we reconceptualise ourselves. Sometimes by placing so much emphasis on gaining the physical back, we inadvertently do damage because it’s saying that achieving normality is the goal. Independence is the goal, but many of us won’t be able to achieve that, and inside, we feel a sense of failure.
We need to address self-esteem during the acute stage of rehabilitation, or we are sending broken minds out there that will stay broken as many people don’t have the insight or skills to reconceptualise themselves.