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A Bedridden Artist, Baker and Culinary Enthusiast Who Just Refuses To Lie Down and Wastes Away His Life
By Mihar Dias
(C) Copyright May 2022
We met Dean at an Occupational Therapy session in Alor Setar General Hospital recently. He was discussing with therapists how art could help in the rehabilitation of patients with muscular problems. He was keen to show everyone in the room it could be achieved with some practice, a lot of self-belief and determination.
We learnt that Dean had a stent in his heart, his gall bladder was just removed and he suffers from muscular dystrophy. Besides, he has plenty of other ailments that would make a normal person lie down and wither away.
His muscular dystrophy is caused by a failure in his nervous system because of a rare paraprotein neuropathy that affects probably one in a million. It’s a debilitating disease.
As a result, he could not use his muscles or move his hands and legs. He had to be helped to get out of bed or moved to his wheelchair. Someone (his wife mostly) has to shower and shampoo him every day for the last 4 years.
But he loves to draw. The therapists made him a contraption that could be wrapped around his palms. He would then insert brushes into the slots and paint using his whole arm since the muscles on his fingers could not be moved.
Muscular dystrophy had made his fingers curl up like the claws of a crow. They were thin and skinny but would not straighten out like fingers on a normal hand.
He told us, “Just imagine trying to hold a fork with fingers that curled inwards towards you. It’s just impossible.” The contraption on Dean’s palm also helped him to feed himself with a spoon strapped to it. “But it’s really difficult. It takes time and practice to get it right”.
Yet with all these obstacles, he showed participants at the therapy session that day how not to accept defeat and lie down in bed waiting to die.
In a few quick strokes, he produced a pink flower in acrylic on canvas to the amazement of patients, doctors, nurses and therapists who gathered around him.
In fact, he did not raise a single finger to paint the flower that morning. Or on any other day for that matter. He could not and would never be able to use his fingers ever again. That’s what the doctors told him when he was first diagnosed.
He refused to accept that as his fate. “Doctors are not God. They could be wrong!” He said.
Anyway, he would not give up. He would find a way to make use of his limbs. As a result of that morning’s discussion, he became an inspiration to all in that therapy session. His painting hangs on the wall as a testimony to his tenacity and enthusiasm.
A doctor who had been watching him from across the room finally walked up to Dean and said, “Uncle, many patients of mine who have ailments like yours usually just lie down in bed waiting to die! But you are the first I have met in my entire career who refuses to give up on life! Well done, Sir!”
At home, with the help of his wife and their three children he has successfully started a home bakery business making “roti Palembang”, sweet buns made of flour, wheat, eggs, butter and yeast that were once accessible only to the upper echelons of Kedah.
At the same they made “ketupat” pandan for Hari Raya. During the last fasting month, they made Kedah style acar or chutney for selected clients in Kuala Lumpur and beyond.
All these business ideas, he thought through while lying on his bed. In between, he paints using a brush or a palette knife strapped to his palms like what we saw at the therapy session.
The business was successful beyond his wildest dreams. In the week leading to Hari Raya and during the first week of Aidilfitri alone, they were able to generate more than RM5500. That included RM500 for his two paintings which we thought were underpriced.
However, orders for the bread, ketupat and acar continue to flow steadily from as far away as Kuala Lumpur and Kuantan. His neighbours in Taman Rakyat kept them busy with regular orders of roti Palembang and ketupat pandan.
Most of these orders are through rudimentary online WhatsApp messages, Instagram and Facebook.
With the help of his daughters, he plans to start a web-based online business soon.
The strange thing about Dean is that his real business when he was healthy was never in culinary arts. He was a graphic artist who had a studio that made signages and billboards.
His company Dean Design on the outskirts of Alor Setar was well known in the North and the one you would go to, for billboards and fulfil all your other advertising needs.
But since he could no longer carry on the business because of ill health he shut down the studio that he ran with his wife for more than 30 years. In any case, he believed he could get better with exercise and therapy sessions.
At the end of our brief interview, he told us that he agreed with the Urologist that by removing his left kidney which was hardly functioning he would be able to walk again. His operation is scheduled for June.
On our way out of his house in Taman Rakyat outside Alor Setar, he showed us his garden of fruit trees and flowers where he spends about two to three hours daily weeding and pruning from his wheelchair and at the same time obtaining free Vitamin D from the late morning sun.
“God’s Vitamin D is free and better than the tablets supplied by the hospital, right?”, he quipped and smiled a broad smile as we waved our goodbye to this man bound to his wheelchair and bedridden, yet would not give up on life.
On our way home, we asked ourselves, we were healthy and could still move our muscles and fingers so what’s our excuse for not doing all that Dean did? What’s stopping us from being what we are capable of being and fulfilling our ambitions in life?
Dean is awesome and inspiring!
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Mihar Dias is a content writer under Headliner by Newswav, a programme where content creators get to tell their unique stories through articles and at the same time monetize their content within the Newswav app.
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