Hospital Diaries : Locked in Syndrome

Have you ever imagined if your soul is locked inside your body, and you can't express yourself except only by blinking? Imagine you can't move your limbs even if you want, imagine if you wanted to talk so much, but words could not come out of your mouth, imagine when people attempt to feed you but you could not open your mouth, move your tongue. Imagine living your life in a container.

I saw a patient who was diagnosed with locked in syndrome this week. When I first saw Mr. M, he was lying on the bed, with a tracheostomy, and a nasogastric tube intact. I talked to him, and he could respond only by blinking his eye. And that is the only way you communicate with patients with locked in syndrome, and that has been the way of communication for the entire week. I would ask a question, and a yes would be two blinks and a no would be one blink. It is not easy getting the blinks right, because sometimes you never know whether one would be blinking spontaneously. And to be honest, from his gaze I know he didn't like me from the start, because I would sense this kind of angry gaze from his eyes, and I know he doesn't like me touching him. But, I started to pay attention at the little things he need, and do simple things for him, such as : wiping saliva off his mouth, helping to notice if he had any skin infections, and  helping him to wipe of the mucus secretions that came off his tracheostomy tube. Eventually, I think we are actually communicating, because I sometimes he would refuse to do my commands and I would ask : Why ? Does it hurt? and he would blink two times. And sometimes after I finish my interview, I would ask - do you want me to call the nurse ? and he would blink two times, and after that, I asked can you tell me why? and I would list out a series of options for him, and he would blink two times when I got it right, and I would reconfirm it. It turns out to be a two way communication in the end, and I am glad that I did not give up on him. At times, I would give him words of encouragement, and tell him to be strong. I know it is hard, and I would see tears lingering from his eyes at times.

What they say in medicine is true : it is never made for you to feel good about yourself, but it is to make the patient feel good and make them feel better, and by paying attention to little things, you can actually make a big difference. Communication is a two way street : you listen, and you respond with care, and things will work out in the end.