“The beauty and mystery of this world only emerges through affection, attention, interest and compassion . . . open your eyes wide and actually see this world by attending to its colors, details and irony.” ~ Orhan Pamuk, Name is Red.
When I first met my friend, Dr. Jamal Ara, she was the Chief Resident of the ER. If you saw her, you wouldn’t believe that she was the head honcho of one of the busiest Emergency Rooms in the country. She had a happy disposition, was petite, just five feet and two inches (136.4 cms) tall, and she had her curly hair in two thick braids hanging over her shoulders. She actually looked like a little girl. But her authority and her knowledge commanded respect and she ruled the ER with an iron fist. At the time, she had just married the Chief Resident of Surgery who was also a good friend of mine and one of my mentors. Having a cup of tea together after midnight, or just cracking a joke in passing were normal for us, and our friendship has just grown stronger and has endured many years.
Since the husband and wife were studying to get their post graduate degrees, they put off having children at the time. However, when they were ready, they endured heartbreak many times when one miscarriage after the other weakened Jahan’s spirit and health. The fact that Jahan was diabetic since she was a child, and that she was in her late 30s didn’t seem to help with bringing her pregnancies to term. Anyway, it came to a point that the couple decided that they would try just one more time, and then if it would end in tragedy once again, they would stop and surrender to God’s will. The sorrow they felt every time they lost a baby was too painfully poignant to endure and was taking its toll on both of their mental and physical health.
To their delight, this last time the baby was able to develop to term, and they looked forward to welcoming the new member of their family. There was just one hitch. The gynecologist had said that there was a chance that the baby could be having a condition known as Down Syndrome.
Down syndrome is a disorder in which a person has an extra chromosome. It is also called a ‘trisomy”, so Down syndrome can also be referred to as Trisomy 21. This extra chromosome changes how the baby’s body and brain develop, which can cause both mental and physical challenges for the baby.
Even though people with Down syndrome might act and look physically similar, each person has different abilities. Children with Down syndrome usually have an IQ in the mild-to-moderately low range, and they are slower to speak than others.
To be clear, I would like to let you know that some of the common physical features of Down syndrome, include:
A flattened face, especially the bridge of the nose with almond-shaped eyes that slant upwards. If you look carefully, you can see tiny white spots on the iris of the eye. They have a short neck with small ears, and a tongue that is quite large, so that it tends to stick out of the mouth. The small hands and feet are distinctive, and there is a single line across the palm of the hand (the palmar or simian crease). The small pinky fingers sometimes curve toward the thumb. Poor muscle tone or loose joints give a feeling that the baby is floppy at birth. Ultimately as they grow older, they are shorter in height as compared to other children and adults.
So you can see as I mentioned before, there are so many different abilities and talents that these children can have. But it would take a long time to note down, and obviously this is not a textbook.
The birth of baby Mariam was celebrated with joy and mild trepidation. She was beautiful with a mop of thick black hair and beautiful almond shaped eyes. The parents loved her dearly and Jamal became extremely protective of her beautiful little girl. Mariam’s limbs were like other children with her condition, floppy. That meant that her muscles were soft and not as strong as those of normal children. Therefore, her neck holding, sitting, and walking milestones were delayed. But with the help of her parents, regular physiotherapy, and a baby gym, she was up and about by the time she was 18 months old. She even started to participate in her school’s athletic meets when she was older.
Speaking was on the other hand difficult for her. Just like her skeletal muscles were floppy, it seemed that the smooth muscles of her throat and respiration were also floppy. Despite vigilant speech therapy, she could just enunciate a few easy words. Most of her communication was by grunts, wild gestures, or a crude form of sign language. Being thus handicapped, she gave the impression that she was more intellectually compromised than she actually was. But I am happy to say, she used to do very well when she was tested, and at the age of 16 she had the intellect of a 12-year-old. As she grew older, Mariam became more and more frustrated when she wasn’t able communicate clearly with her teachers, caretakers, or most of all her parents.
The only thing that brought Mariam pleasure was going to her kindergarten, and then later on school. She used to get passionately involved in the arts and crafts class. Looking forward to mess and play around with the paints and colors in the art room were the highlights of her day. Her teachers observed that she would just lose herself while painting, as if she were in a trance, when she sat and worked on one of her canvases.
Seeing her ardent interest in painting, Jamal started to look around for a teacher who would be patient and compassionate while instructing her daughter. After a few hits and misses, she finally found a mild-mannered retired art teacher who immediately bonded with Mariam. It was a joy watching them interact. Under the patient tutelage of Professor Bashir, Mariam learnt about mediums, paints, colors, and most of all painting techniques. Just to see the happiness on her face when she came back from her lessons was priceless.
As she grew older, and the lessons became more advanced, and with the repetitive motion of using the paint brushes, Mariam’s fingers became stronger. As her confidence grew, she started to become more daring and began to paint on larger canvases. The beauty of the colors she melded together along with the abstract lines swirling and dancing on the canvases were her form of communicating with the world. Her mother observed that the colors she chose on any given day were according to her mood. A darker palette when she was angry or sad, and a more colorful one when she was happy. The complexities of the designs and the aesthetic presentation of the paintings were her lifeline and she started to paint even more. Her parents and teachers had to struggle to keep up to provide her with enough art supplies and canvases.
By now, Jamal Ara had finished her specialization studies and was an eminent professor of endocrinology with a stellar reputation amongst her colleagues, students, and patients. So, it was no surprise that one day Jahan had a visitor at her home who happened to own an international art gallery. Hilde von Auerstein was a friend of a friend that happened to be visiting from Germany. Unfortunately, she had eaten something at her hotel that didn’t agree with her. Because, she was not feeling very well, and since she was diabetic Hilde needed to consult an endocrinologist before she took any medication for her gastroenteritis. She needed immediate advice, as she did not want to have an unsteady blood sugar that could have made her even more ill than she already was. Being away from home in a strange country also made her apprehensive, and she wanted to get better as soon as she possibly could. As a special favor to her hosts, she was therefore brought to Jahan’s home instead of her clinic since it that day was a public holiday
After she was examined and given the expert advice she came for, Jamal and the visitors sat down for some refreshments and a chat. Looking around she noticed the unique collection of paintings on the wall of the living room. And just like that the conversation turned towards Mariam’s love of art and painting. Hilde obviously asked to see some more of the artwork. And Jamal, ever the proud Mama brought out some of the larger canvases to show the art gallery owner.
Hilde was extremely impressed with the brushwork and colors that were swirling on the paintings. Looking intensely at the technique and the kaleidoscope of colors, she started to sense a powerful feeling that evoked a cornucopia of emotions in her. Being generally a person who stoically kept her emotions under control, she could not believe the intense reactions and the urge to communicate that literally sprang from the paintings. It seemed as if they were talking to her. She felt a unique energy flowing from the paintings filling her body and mind. She watched as the energy flowed from the paintings like a liquid rainbow swirling gently around her. It was as if she was transported into another world. The abstract paintings were creating pictures in her mind that were telling her their stories of happiness, pain, and most of all the abject frustration at not being heard. As she continued to look at the paintings, her eyes filled with tears, and she became inexplicably emotional. Brushing her tears away and with a determined expression on her face, Hilde resolutely said that she wanted to show the world Mariam’s beautiful, soulful talent that literally poured from the paintings.
After communicating with her for about a month, Jamal finally received a phone call from Hilde. She sounded extremely excited and wanted to know whether Mariam could get enough paintings ready for an exhibition in Frankfurt and another in Washington DC. Since she happily painted most of the time, getting enough canvases together for the exhibitions was no trouble at all. Jamal was ecstatic. Her talented daughter was on her way to getting international acclaim in the art world!
As was expected and predicted, Mariam was feted in Frankfurt and Washington. Her paintings were well received and most of them were sold. As a matter of fact, Jamal had foreseen this and had thankfully brought along more paintings that were requested or agreed upon. It was all very exciting and both of them had a wonderful time, not only at the exhibitions, but also sightseeing. From the excited way she told me about her visit, I think Jamal had more fun than Mariam at Disneyland.
Being part of the international art scene was an eye opener for Jamal and Mariam. It created the catalyst of an idea in Jamal’s mind to finally exhibit the unique paintings at home as well. Since professional endorsement through the international and local press had been given to the paintings, buyers were already clamoring to add a Mariam Original to their collections. Rumors of the feelings of peace and tranquility emanating from the paintings created a keen curiosity amongst art lovers and many flocked to Jamal’s house just to see whether this phenomenon was an actual fact, just fiction or a marketing gimmick created by the media to sell more of the unusual paintings.
It came to a point that there was always a crowd at Jamal’s house. It was now absolutely necessary to have a local art gallery for Mariam’s creations, so that they could finally have peace in their private lives. Rather than making a profit, Jamal wanted Mariam’s paintings to be appreciated and seen by many. She wanted the gallery to be where people came to see them with the option to buy only if and when they fell in love when they looked upon their favorite canvas.
Many venues were explored, and opinions were sought from friends and professionals alike. The final solution was brilliant! There was an empty penthouse hall on top of the National Institute of Child Health (NICH). It had been unoccupied for an awfully long time. Since no one was using it, remodeling the fairly large area into an art gallery full of light and positive energy was the logical solution. The NICH’s director, Professor Afroze Ramzan thought it was a good idea and happily gave the go-ahead. Not only that, but the rent of the place was also extremely nominal. After all, in addition to getting permission for the art gallery, Jahan had also pledged 50% of the sales of the paintings towards the NICHl’s cancer ward.
The art gallery became a reality, and the next step was to plan an inauguration party. And what a grand and well-attended party it was! I helped in planning the soiree and with my media connections, I made it a point to see that many VIPs and media celebrities I were invited. Friends and journalists in the print media ensured that the news about the gallery was splashed all over in the main newspapers. The event even warranted a 20 second newsflash in the evening news with the invited celebrities raving about the paintings. A few days later a well-known TV station came to the gallery to film a short documentary on Mariam, her paintings, and the unique art gallery.
The beauty of Mariam, her creations, and the positive energy that she spread just brought a feeling of peace and happiness that touched the beholder to the core. Where doctors thought that little Mariam would not be able to communicate due to her condition, despite all odds, she had reached out to the hearts of the world and created an sanctuary of happiness with her talents. I am quite happy to say that I was involved from the beginning with Jamal and Mariam, and my contacts and willingness to run around helped to some extent to get the gallery to open. I now own four of her paintings, and they are quite a conversation starter with my visitors.