10:25 A.M., AMAR SINGH COLLEGE
It is a November morning. With slurred noises of people talking, rolling shutters lifting, dogs barking- the day has broken upon the valley after another cold night. Undeterred by the inclement weather, the city is humming with activity. But behind the walls of Amar Singh College, life seems asleep. As the gate opens, a squeak echoes in the distance- “chrr-rrr... No sound is heard except the footsteps crunching on the frost nipped grass. The trees are like statues. The soft rustling of birds is missing. The air is still- mournfully still, when a grizzling noise breaks the silence. And within a few moments, an old, juddering rickshaw emerges from behind the fog. A man in a grey phiran steps out of the rear cabin. And light falls on her face. She smiles- the smile that hides an infinite suffering. With a green headscarf over the head that rests on the bosom of her mother, she looks out through the drop down sides of the canvas roof. Her eyes-brown, deep, sparkle with a glint; they have questions which no one in the world can answer. After having a word with the Exam Coordinator of the College, her father carries her in his arms and walks towards the corridor. Her mother follows, with a bag in one hand and a kangri in the other.
“CENTER NUMBER 18”, in bold letters, on the door, at the dead end of the corridor, reads. It is the first day of her First Year Bachelor’s Degree Examination. “Her Center Number according to her Enrolment number is 359 which lies on the upper storey of the building but for her comfort, we have made a separate seating arrangement in the ground floor,” says Prithi Pal Singh, Exam Coordinator, Amar Singh College.
Inside the room where the benches are already occupied by the students, she is made to sit on a wooden chair with arms, while a small stool is put beneath her feet to support her shivering limbs. Her mother standing to her left, puts a pen in her hand, searches the bag, and spreads a warm blanket on her knees; as she settles down to do the paper. “Though we have many such students with severe fever or a fractured limb but we haven’t seen a case like this before,” says Farooq Ahmad, Assistant Superintendent of the Center. “And what is more surprising is that despite her weakness, she doesn’t need a scribe.”
Saima Ramzan, 20, is the third child of her parents. She was born with Muscular Dystrophy, a group of more than 30 incurable, genetic diseases characterized by progressive weakness and degeneration of the skeletal muscles that control movement. “Living with a disability or an illness can be hard. But it shouldn't hamper the pursuit of education,” says Prof. Zahoor A. Chat who has taken the charge of Principal of the College in November this year. “It’s really very heartening to know that there are such supportive parents, who despite all odds, strive to make their children educated,” he adds, encouraging the efforts of the family.
The following day at 10:30 a.m. in the kitchen of Gugjoo’s two storey house at Dangerpora in the old city, Haleema is making tea for her family, while Muhammad Ramzan Gugjoo has ensconced himself in his small grocery shop, cut inside the house which has an entry through the kitchen. Garbed in light brown phiran and black headscarf, Tabasum and Saima are sitting in the kitchen side by side. Tabasum, 25, is playing with her cell phone and Saima, 20, with a book of English in her lap, is preparing herself for the next paper. “Our neighborhood is a colony of artisans,” says Ramzan. “Nobody goes to work outside. And some 17 years back, I was also one among them. I used to weave and tuft Qaaleen rugs and carpets,” he continues, turning his head towards the street. “But then, with time, I thought my daughters need me more.” Out of the four children the couple has, two of them are afflicted with Limb Girdle Muscular Dystrophy. “We didn’t notice the weakness in Tabasum, until one day, when I accompanied her to the Darsgah, her classmates told me that Tabasum walks with a limp, while taking the stairs,” says Haleema, with a break in her voice. “And we decided to visit the doctor, who didn’t only say that the disease was incurable but made a prognosis that our second child might also develop the same characteristics because of our cross cousin marriage.” But their second child, Waseem, 22, grew normal. And things were coming fine for the family even when Haleema gave birth to her third child, Saima. But when she began to crawl, the doctors’ premonition came true. “In our third child, Saima, we recognized the signs when she began to walk, probably at the age of 4.” And when Saima was diagnosed with the same signs, they didn’t consult a doctor afterwards. “Unlike many women who stow their gold jewelry for the marriage of their children, I have been selling mine for the treatment of my daughters,” says Haleema.
In the present times when inflation is on the rise, families fall out, negative thoughts spin you around, here’s a family that has grasped the nettle. The only source of income for whom is a small grocery shop. A family where father doesn’t shout to give a vent to his pent up frustration nor does the mother cry to express her helplessness. Living in the aura for more than 20 years now; they have learnt to take the rough with the smooth. They have nothing to fall back on but hope. And it is from the lives of such people that inspiration takes birth.
“I quit my studies, considering our poor financial circumstances,” begins Tabasum in a low tone. “Moreover we are four siblings, I wanted each of us to get educated,” says Tabasum, bowing her head slightly. Tabasum quit her studies after class X due to the poor financial circumstances of the family. But Saima couldn’t suppress her growing interest in studies. She did her matriculation in 2004 securing 66% with 78% in mathematics alone. By that time she had developed a keen interest in learning mathematics. And wanted to earn a degree in the field. But as luck wouldn’t have it, she was denied by the Nawa Kadal Higher Secondary School authorities, the only higher secondary school in the vicinity, where she intended to seek admission. Consequently she was put her in the humanities stream, of which she has a very little interest. “I have almost no interest in learning humanities. I wanted to take up science,” says Saima. “I did tell them I would try to attend all practical classes on a regular basis, but they denied,” she pouts. It is true that wishes don’t always come true but in case of the two sisters, the disappointment is more. However, in terms of education and technology, they are not behind the times. They not only have a good academic background but a better knowledge and understanding of computers as well. It all began in 2005 when her cousin informed Tabasum about the 3 month computer course launched under the scheme of “Integrating persons with Disability in the mainstream of Technical and Vocational Education” by the Kashmir Government Polytechnic, Gogji Bagh. But due to her difficulty in walking, they got her registered at a nearby computer institute, NICEC, Kawdara.
Seated on pillows, with a kangri inside their phiran, you cannot get the faintest idea of what they have been through. They say “an hour of pain is as long as a day of pleasure”. Then how long would be the pain of like 20 years? Sigh is the word.
Though both the sisters are not able to move an inch from their place but the winter season worsens their condition further. “The thing that keeps us alive in winters is kangri,” says Tabasum with a smile. Since they are not able to make even the slightest movement, Haleema has to be with them round the clock. “I spend all the time with my daughters, whether it’s about combing their hair or bathing them,” says Haleema. “Their hands only get into work when their elbows are firmly rested on their knees,” she continues, while placing a tea cup in Tabasum’s hand. A mother who has borne three daughters would consider herself a carefree woman elsewhere in the valley but for Haleema, it doesn’t mean the same. Her place is confined to the kitchen. She doesn’t go to see her relatives. Surprisingly, she has no complaints. “I have hardly been out of earshot, even for a moment, since the realization dawned upon me,” says Haleema. “Even the moment my mother passed away, I was nursing my daughters,” says she, in stifled sobs.
Gugjoo’s have a small garden; overgrown with weeds, just besides the house they live in. Every summer Haleema plans to scythe the grass so Tabasum and Saima would move out of the murky setting of their kitchen, at least on wheelchairs. “Every summer I plan to mow the lawn, so Tabasum and Saima could come out of the dark and dim rooms, to which they have confined themselves for 13 long years now. But my schedule dismisses the thought from my mind.”
Aside from Tabasum and Saima, Gugjoo’s have a daughter named Iqra, 17, who studies in class XII. And when she is home, this bubbly little girl helps her mother, whether it’s about washing clothes or cleaning the house. “Our youngest daughter, Iqra, 17, wanted to take up humanities so she could get more time to spare with me in the kitchen,” says Haleema. “But her brother, Waseem motivated her to take up commerce, since humanities doesn’t have a lucrative career in the valley.” Waseem, 22, who helps his father at the shop, is pursuing his Bachelor’s in Humanities. Having such aura in his head all day, his inspiration seems to have run dry. “I lost interest in studies only after class X,” says Waseem, hiding his face behind the newspaper. “There seems to be no future,” he continues in an undertone.
It has been almost 10 years since they visited any doctor for their daughters. “Of all the doctors we have visited so far, nobody promised of a future. But we haven’t lost faith in Allah. Whatever He does, He does for the good of His believers,” says Haleema, trying hard to keep up appearances for the children. “I believe Allah will sure have mercy upon my family.”
MEDICAL SCIENCE SPEAKS
“Inherited Neuro Muscular Disorders (NMDs) form a very large and heterogeneous group of genetic diseases that cause progressive degeneration of the muscles and/or motor nerves that control movement,” says Dil Afroz, Associate Professor at Department Of Immunology and Molecular Medicine, SKIMS. “The overall prevalence of NMDs is very difficult to evaluate, but one can estimate that, given the incidence of every different type, around 1 out of 1000 people may have a disabling inherited neuromuscular disease, including Duchenne/Becker muscular dystrophies (DMD/BMD), Limb Girdle Muscular Dystrophies (LGMD), Congenital Muscular Dystrophies (CMD), and Hereditary Motor-Sensory Neuropathies or Charcot-Marie-Tooth neuropathies (CMT).”
The case of Tabasum and Saima, according to the professor is a rare case of Limb Girdle Muscular Dystrophy. “LGMD is typically an inherited disorder, though it may be inherited as a dominant, recessive, or X-linked genetic defect,” says the Professor. “The result of the defect is that the muscles cannot properly form the proteins needed for normal muscle function. Several different proteins can be affected, and the specific protein that is absent or defective identifies the specific type of muscular dystrophy.” So far, there is no cure for any kind of Muscular Dystrophy. But it can be diagnosed. “Though there are many researches under going, especially in gene therapy field, but there is no cure at the current stage. The precise diagnosis of NMDs requires a conjunction of extensive clinical examination and targeted complementary tests like biochemical analyses, electromyography, imaging, histological analysis of biopsy and a final documentation by molecular genotyping is required.”