As I emerged from my medically induced coma in February 2010, I had periods (in amongst my severe hallucinations) where I slowly became aware that I was on a life support machine in hospital, following a stroke. But I was completely unable to physically communicate that fact to anyone – for two weeks.
I was experiencing what people describe as ‘locked in’ syndrome.
It was terrifying. My response to seeing someone who loved me coming to visit me was to cry tears. But there was no noise, just tears rolling down my face. People assumed they were involuntary movements – but it was genuine emotion. My friends, family and doctors assumed I was in a vegetative state – but I was there the whole time.
I could see and hear, and feel anybody touching me and yet my brain couldn’t instruct any part of my body to move.
I couldn’t develop any communication signal, which is the key thing with anybody locked in – either an eye gaze or a blink. But I couldn’t do that. There was no outward sign that I could understand anything.
It was like being buried alive. There was no TV turned on for me – all I had was a clock on the wall and patients screaming around me. I had three kids who were six, nine and ten at the time who hadn’t been to see me so the separation anxiety was beyond belief. I was so bored, fearful, upset, angry, in denial, scared and hot – I couldn’t regulate my temperature.
I was in constant fear that the conversations my loved ones were having were that I wasn’t worth being saved.
Above all it was frustrating because the doctors made no attempt to try to formerly establish any communication signal at that point, something I’m still struggling to understand. Instead, it took my proactive friends to try to find a way to communicate with me using a rudimentary communication board, because they wanted to unlock the person they believed to be still inside.
In two weeks my consciousness improved and my friends were able to get me to blink to answer questions (blinking to spell out letters, which was a long process). I was still locked- in but I was able to blink to communicate.
My experience has taught me that we should always assume that a patient is conscious until we have absolutely proven otherwise. Beyond that, we must be truly compassionate in our care for patients who are in a vegetative or minimally conscious or locked-in state.
Patients need to be kept alive and I am personally so very grateful for the skills of my medical and nursing teams in giving me my second chance of life, but treat the human being too, it’s not just about patient SATs and vital signs.
Is the Glasgow Coma Scale (GCS) score, which is used to assess consciousness, always reliable and interpreted accurately? Indeed, is it performed on a patient every hour?
For anyone ITU is a very scary place. People die. Inappropriate conversations are overheard. Patients are often in pain and scared for their own survival. ITU is boring, so patients tend to over think and stress about what may happen to them. It’s also incredibly lonely.
All brain injuries are different, but we must start being truly patient-centred in our care of such patients and start treating the whole person – that’s both physically and emotionally.
Health professionals need to start treating people like they themselves would want to be treated.
My determined self-belief and hope against all the odds was ultimately what got me through and why my charity strap line is ‘no promises, just possibilities.’