What is it like being trapped in your own body? Waking up in the middle of the night choking but not being able to alert anyone about it? Suffering from pain but not being to relief it? Having the clarity of mind, but not being able to move nor utter a single word? This is Motor Neurone Disease (MND). As the name suggests, MND is a degenerative neurological disease that affects an individual’s motor neurones (cells that control voluntary movement like walking, breathing, speaking, swallowing, etc). At present, there is no known cure for MND.
Yesterday, I had the privilege of meeting Mani, a patient with motor neurone disease at the hospice. For the past two months, I’d walk past his room, wave and smile at him, and off I went to complete my other duties. Each time I walked by, he never fails to greet me with a warm megawatt smile—it was almost as if he wanted me to come in to speak to him.
I’ve heard so much about him which made me want to meet him, but I never entered his room because I didn’t know how to communicate with him. Communicating with Mani requires the use of a coloured alphabet chart, in which you follow his eye movement to determine the alphabets that make up what he wants to tell you. As you can imagine, wanting to put across just one word takes time. Having a conversation with him requires a lot of patience on both ends.
Before meeting Mani, I asked Janice—a volunteer at the hospice who has been working with Mani for about 5 months—what she talks to him about. Janice said that conversation with him comes very naturally, and there’s no need to think too hard. I was finally able to meet this guy that everyone at the hospice seem to be talking about! I’ve heard how patient, genuine and cheerful he is, but being able to meet him for myself was very exciting.
As expected, when I walked into Mani’s room, I was greeted a smile that lit up his room. Janice taught me to use the chart and off I went trying my hand at communicating with him. Getting used to the chart, figuring out the letters and stringing them together to form a word and then a sentence was very trying. At times, I got slightly frustrated at myself for not being able to get it. Each time I got it wrong, I would apologise, but all Mani did was to shake his head ever so slightly and smile. He never once got frustrated, and even went on to tell me that I was a natural at this. When I got it right, he would blink his eyes (which means ‘yes’) and smile.
After getting the hang of it, Mani asked me, “Why do you always stand outside and not come in?”. I was at a loss for words. He actually remembered seeing me walk by. You see, Mani is almost like the “star” of the hospice. He gets many visitors and every single staff in the hospice knows him. Why would he remember someone who he catches a glimpse of barely 5 times. Janice went on to say that he asked her about me once, and even remembered what I wore the week before. I was, and still am truly touched. I told Mani that because I didn’t know how to use the chart in the past, I was apprehensive about meeting him, but now that I can, I’ll visit him whenever I’m at the hospice.
The conversation between Mani, Janice and I was peppered with jokes (mainly told by Mani). He had a great sense of humour which never failed to make us laugh. He complimented me saying that he liked my dimples, just like a cheeky boy. He told us little things about himself like how he has 28pairs of Adidas shoes, that he supports liverpool, and that he has been in the hospice for 6 months. His wonderful personality shone through despite his inability to speak.
Mani, however, expressed frustration that some of the nurses at the hospice did not know how to use the communication chart, and thus couldn’t understand his various requests and needs. In his own words: I was in pain; I suffered; No one helped when I choked; It can be life threatening. From what I gathered, he’s happy as long as someone wants to learn how to use the chart, even if they get is wrong occasionally. He just gets frustrated if someone refuses to even try.
Coincidentally (though I don’t believe in coincidences), Janice was going to bring Mani to the florist to get flowers and a card for one of the physiotherapist at the hospice, and I could go along too! At the florist, he specifically requested for pink roses, and even chose a card for her. When deciding what to write in the card, he said that he had a writer’s block, and wanted Janice to write the card on his behalf. Janice insisted that he think of something himself, and that we’ll pen it down for him. When it was time to sign off, he indicated that he wanted Janice’s and my name to be on the card as well. Before leaving the florist, he asked if the two of us wanted anything. He went on to signal that he wanted to thank the florist for her help.
Suffering from this dreadful illness, he has every right to be impatient, depressed and frustrated about his condition. But he isn’t. Not one bit. His frustration, if any, is directed not at the plight he’s in, but the fact that some people refuse to learn to use the chart so that he can communicate with them. For one, I’ve never seen anyone with a smile so genuine, that it warms you up instantly. One thing that struck me was how Mani would say ‘Thank You’ after someone did something for him. For someone who finds it so trying just to say a single word, making the effort to say a word of thanks was beyond admirable.
As able-bodied people, we take what we have for granted. One minor setback and all we do is complain incessantly, saying how life is unfair to us. When things deviate from our original plan, we sulk. Expressing our gratefulness seems like a task too difficult to carry out. We have much to learn, my friends, so much to learn.
As volunteers, you choose to help hoping you can make a difference in the lives of others, when really, it is the very people that you help, that unwittingly make a difference and leave footprints in your life. Mani’s optimism, patience and tenacity is above all, exemplary.
If anyone’s interested, this film is based on a true story of a girl who was diagnosed with MND, and how she chooses to live life to the fullest: http://www.mysoju.com/japanese-movie/1-litre-of-tears-movie/
Everyone has a story to tell, take time to listen. And I promise, you’ll never be the same again.