The Final Conversation With the Speechless Boy- A Disability Story

Noor has departed from this world. He shines on in the next. The last 6 months had been difficult because his health kept deteriorating.

Due to other ventures my visits also turned less frequent. It gave me a lot of joy at the fact that he used to smile often when he heard my voice.

I was there to see him on his last day. I had a strong feeling that it was his last few hours remaining. I felt a strong presence of light all around him. Angels were waiting for the moment to wrap his soul with the martyr’s robes. He was a warrior to the end.

His soul rests ever untainted, his resurrection too will signify purity. A sound heart!

What was my last conversation with Noor about? I reminded him that these were the best 10 days and the final month of the year, Dhul hijjah. His desire to reject eating and drinking signified his will to fast these last days of his life. His desire? It would be rather proper to say his forbearance.

Our last conversation were prayers. I prayed for him and I hoped that he did for me. He was silent through out it all. But I knew he could hear me. Why was I the last person besides his family to be with him in his last moments? I don’t know the answer to this. Why was it that his last moments were written on the day that I visited him? I am still pondering over the time I spent with him, caring for him.

What lessons were there to learn for me? What was he trying to teach me? He tried his best to elevate me. I hope that some of those experiences go on to stay with me. Looking after him was like feeding my soul, guiding it. Now he is no more, and my ravenous soul may dry up. I am seeking an anchor to keep my soul centred. I am seeking light. It is easy to wander in darkness, it takes courage to be the warrior of light.

His body looked at peace in shrouds. A sort of smile on his face. It reminded me of these verses:

يا ايتهاالنفس المطمئنة. ارجعى إلى ربك راضية مرضية. فادخلي في عبدي. وادخلي جنتي.

Dangers of Falling into …

Cleansing one’s self of the diseases that plague the heart is a continuing process. The moment you think that you have wiped away an evil aspect such as jealousy, envy or hate, that’s the moment you have to be careful for it to not come back. I do believe, our hearts are different. Hearts are born with different qualities but more importantly, how we nurture our hearts becomes the deciding factor as to what qualities it possesses. If you constantly remain on guard to not get angry, to not backbite, to not speak ill of others, to not harbour grudges, to not feel envy, the more likely you are to increase yourself in qualities such as gentleness, forbearance, calm temperament, contentment.  When we see others with faults, those faults are also reflected within us. That’s true in many cases, but it’s not always true.

Sometimes it is a matter of seeing those faults in others and separating yourself from such people who possess them. Your environment, your boundaries, your company is a thing to be mindful of. There is a saying, Show me your friends and I will tell you who you are! And at times, just hearing the toxic conversations is enough to make you fall back into those diseases that plague the hearts. With this I have a question for you! What is the norm? Confront the person directly to point out their faults, mistakes, shortcomings or any behaviour you find odd? Or do you indirectly convey the message through indirect talk or talking about their actions without specifically mentioning them? I am usually aware but I tend to ignore other people’s habits as long as they don’t affect me. Perhaps there is a lesson to learn here too, who not to be like? What qualities and habits to steer clear from? How to conduct yourself in day to day dealings with others?

Writing everything isn’t evidence of my wisdom. I write, so I can perhaps gain an objective insight into myself. I am full of faults, although I am mostly calm, anger is something I have struggled with most since childhood. At some point, I learnt to manage it. But even now sometimes the frustrations, irritations, stress and whatever else bottled inside, can quickly explode at times if not released through other mediums. 

I am writing this to assess the link between different diseases of the heart and whether any outside influence is responsible in lighting those evils? Responding to what comes at me is a choice where I exert influence. It mostly always comes back to me as an individual, how I respond, how I react, what is my demeanour, how is my behaviour, what is the state of my mind, what is the tone of my voice?

Picking up on this as the new year starts. 2022, here we come! The year begins with reflections upon death. So, I guess I might as well talk a little bit. I fell off the tracks mostly because of my own thoughts were overwhelming me. Because of the many events that have happened in the past, mixed with current issues, I was having suicidal thoughts. Not that I will act on them, but still they were present and getting me really down. So, I spoke about them to some close friends and after some reflection, I realised the underlying reason for it was that my self-esteem was hurt. I have always had great expectations from myself. When I fail, it’s often a struggle to pick myself up.

Fast forward to today, I mentioned earlier that I am finishing writing this article tonight. I wrote this in October 2021. Right now, I am sitting, fully awake, grateful, yet quite distressed. Distressed because Noor is nearing end of his life. The speechless boy I wrote about before. For the past week, Noor’s health deteriorating has been occupying my mind. It’s also making me reflect on life, a blessing! It’s making me reflect on death too. You see, no one knows how many more breaths he has got left to breathe. No one knows, how many breaths they themselves have left to breathe. Every soul shall taste death. It can come anytime in good health, good times or poor health and difficult times.

Noor has lived a wonderful life. The best he could have, even though he is not fully capable. Everyone around him prepares to part with him. I keep wondering if the miracle continues living. His survival for the past 30 years has been a miracle. He defied odds over and over. He clung to life. His will to live is strong. Even now, he breathes, rhythmically. He takes 3 to 4 deep breaths and holds it for 8 to 10 seconds. This pattern has further slowed, he now holds it for 20 seconds. He only has one lung functioning. The rest of his organs are slowly shutting down. Yet, his will to live is as strong. I am hoping that tomorrow, as the new sun rises. He gets better because he has taught me that life is precious. Too precious for any human’s intervention to try cut it short. However long we tarry on this earth, death is a certainty for us all.

Life is a blessing. Life ought to be lived fully. It is not a bed of roses. It is tough, the world can be cruel, circumstances can be harsh. No matter, it is still a blessing. A blessing to be grateful for. Give gratitude with each breath.

I sit here next to him waiting for him to breathe his last, yet I don’t know if I would breathe my last before him.

This makes me question the life I have lived, whether I done enough good. Whether I enjoyed it in good times, whether I remained patient in difficult times. Whether I have been grateful enough! Nothing else matters except a sound heart. Do I have one? I know Noor does, his heart was never tainted with the diseases. Even if his body suffered, his heart has remained pure, his heart is full of light. If you listen closely, you can hear him praise the Creator, his heart sings praise. His body suffers, we can only try lower his pain. All of this and much more that I can’t put in words has been occupying my mind.

It has also lit the spark inside me. He has helped me realise what a blessing life is. Life is beautiful if you are grateful for the things you have. Count your blessings.

He doesn’t want to see us cry or shed silent tears, so he breathes and his will to live remains strong.

A conversation with the Speechless Boy! A disability story

“Good Morning Noor!” I try say it with a burst of energy, putting in warmth with every word uttered. Noor lays there in his bed snoring. Sleeping like a baby on his side. He is positioned to sleep every night. I will leave the other details of his routine for another time. Today, I wanted to talk about how he can whisper, if you focus and listen. If you pay a little attention, he tells you how he feels.

“Stay by my side.” He tells me. Hold my hand, when I cry. It soothes me. He reminds me that because he doesn’t have the capacity to think, he feels everything. A kind and gentle touch is what he seeks and loves the most.

I ask him why is it that not all touches are gentle. He tells me, “It’s not that they are not. It’s just the part of their job. Routine and time keeping often takes up their attention. But you, you are here to help slow things down and be gentle.” I chuckle when he says that. “Hmm… I wonder, so if I can slow down the routine work a little, do you mean I can inject some gentleness and kindness into it all.”

“That’s exactly right,” he says. He continues, “A little slow and steady, although I will tell you that people looking after me have the warmest heart and are most experienced. They have known me for a long time. So they also understand the nuances and expressions I convey, that much more.” He chuckles again and adds, “Yes, that’s right, they know when I am being a cry baby and throwing a tantrum.”

“That makes sense!” I tell him. “I read through your file and case to understand your needs better.”

He smiles when I tell him that. It’s a lot of effort and work to look after you, ain’t that right! He beams upon hearing me say this. I take a deep breath then centre my thoughts, so our conversation doesn’t distract us from looking after him.

He is a big star wars fan. He loves marvel and has watched every movie. In the movies, he tells me,”I fall asleep and then I am in the movie. I dream the movie, that’s how I watch them.”

“Wow, you must have the best dreams. You are really imaginative and creative.” I tell him. I then tell him about some of my experiences where I have dreamt the storybooks, audiobooks and podcasts. He is joyed to hear it and happy that he shares the similar experiences.

“You sure do, but you’re much more creative. It must be similar to watching anime.” As I tell him this, I realise that he has fallen asleep. Perhaps dreaming another movie and bringing our conversation to a close.