The Look in His Eyes

by Anna

I have spent the last few days caring for a man with Multiple Sclerosis. He is unable to talk properly and move any part of his body other than a few facial muscles. At first it was difficult to find out what he tried to communicate to me but with every day it got a little bit better. If I wasn’t sure what he meant I asked him to blink once for a yes and twice for a no. It was quite funny at times when I asked him to blink only once to confirm if I got it right and he just stared back at me blankly, yet with a light grin on his face trying not to move or accidentally blink which clearly meant that I had gotten it wrong again.

We have quite a few patients coming in from the same home that he is living at. They are all paralysed in one way or another to a more or lesser extent. Some had sudden accidents that had damaged their spine and others succumbed to an illness like MS, that creeps up on you slowly.  Most of those patients are hard work, physically, because they are unable to move properly and need a lot of care. This only from the outside. From the inside, however, they are absolutely wonderful people with really interesting personalities and quite a wicked sense of humour. Only rarely did I find that someone from this care home was grumpy and unhappy. They all seem to thoroughly enjoy a happy life. I wonder, what gives them the drive to carry on living?

Last year we had Tony Nicklinson in the news, a man who was also unable to move his body, fighting for the right to die but wasn’t granted his wish. I wrote a blog on the topic of death and dying back then already. Interestingly, the man I have been looking after over the past few days didn’t want to die at all! He appeared tremendously content with himself. Sadly he is currently quite unwell and needed intense hospital care with his chances of recovery being slim. But he insisted for quite a long time to remain for resuscitation. Again the question in my head: What gives him the urge to carry on living? And how did it all start?

I asked a friend of his who came to visit him regularly if she could tell me a little bit more about him. She said that she had known him for the past 10 years and told me that he used to lead a very active life as a Civil Servant until the onset of MS when his wife left him because she didn’t feel like she could care for him and has only two other relatives that visit him occasionally. His illness started with numbness in his little finger about 20 years ago. The past 16 years he had spent paralysed at the special care home. He has a huge telly that he can operate with eye movement where he gets his entertainment and information from. His friend also mentioned that he has a very strong will and has areas of interest that he follows.

When I met him first I was taken back by his intense eyes, full of information, full of expression full of unspoken words. These eyes are on you whenever you look at him. This morning they were vague and turned upwards to the ceiling and my heart sank at the thought that his condition had gotten worse. But during the course of the day he perked up a little and was even able to throw a few surprise sentences into the room. For example, when I offered to switch the radio on for him and went to get some headphones he hissed “No I don’t want those” quite clearly. Not so clear was the information that he didn’t take milk in his tea, which, for English standards, is rather unusual hence it took me a little bit longer to work it out. There are so many things that I would like to ask him.

It must be so hard to not be able to bring your point across properly. But I guess that at his home he is happy because people there know him and he has everything he needs. It hit me surprisingly hard when I was told earlier that he would be moved to another ward because we needed his bed space for an emergency admission. After all the effort to try and get to know him, to begin to communicate, find out what he likes and especially for him to get comfortable in an unfamiliar hospital environment, he was now to be moved to another department only to start all over again. And I don’t want to make it sound like the staff there won’t look well after him, but I did worry that it would worsen his condition and that he would give up on himself. I escorted him to the other department and left with a big lump in my throat after a much too short goodbye.

What does it mean anyway? Who is he to me – who am I to him?

These emotions topped a recent encounter of the daughter of a former relative who recognized me outside work and said that I had looked so well after her father and that he used to call me his angel. Her little daughter chirped in straight away: “He used to say that to all of the nurses.” Of course he would, he was a lovely gentleman. Gentle in any way. Though there must be something about her saying this to me, because at times he would decline help by other members of staff insisting to wait until I was available because I “had a certain way of doing things”, as he would put it. He passed away a week ago. But he was also happy.

So what more do words express compared to the look in someone’s eyes? If we had only a certain amount of words available, what would we spend them on?