Dina Baslan, the daughter of a Circassian family that has lived in Jordan’ with her words, collects the stories of minority communities in the country and from now on, she has shared these stories in şapgir. The story of this week is the narrative of Nairy, struggling, although she has been suffering from arthritis since 4 years old.
Dina Baslan
dina.baslan@gmail.com
I first met Nairy three years ago at her house in Amman as I prepared to interview her for a story I was about to write on her newly established foundation, the Jordanian Rose of Hope Society for Arthritis Patients. The young strong-willed Armenian woman who, against all odds, was determined to find a place for herself in the Jordanian society instantly inspired me.
The warmth that I encountered in that house - whether it was by her mother who insisted on preparing me Armenian food the next time I visit, her sister who continuously encouraged Nairy to keep going, or her numerous energetic pets who I can no longer keep count of - is something that touched me for years to come. For this reason, I share with you the story of Nairy Vahreeg Markarian.
Childhood
“Am I the only sick person in the world?” The wheelchair-ridden four-year-old child would often ask her mother. She dealt with the societal rejection she was met with at school by retreating to the protected environment in her own loving home. 'My brother used to tell me 'don't cry, we are going to play the hunters game'. He would put me on his shoulders and walk around pretending that we are in the forest.”
Despite her family’s attempts in nourishing her spirit, however, her health continued to deteriorate. With a feeble neck that failed to hold her head straight, Nairy used to ask her mother to pray for God that she dies. Instead, every morning, the mother used to raise her daughter's head and say: “You are the most beautiful girl in the world.”
'As a mother I always had to be strong and brave in front of her, even though I was extremely sad,' says Vartouhi Markarian with a broken Egyptian Arabic accent. 'She always tells us, 'I am happy and proud that you are my family, don't cry.”
Living with the disease
'I don't know what's the meaning of living with no pain,' Nairy says. The 38-year-old advocate was diagnosed with the degenerative bone disease Arthritis when she was only two years old. Although pain is something she always associated with, she said, when it is given from God it is not a curse. 'When do you really feel pain? When the society imposes it upon you.'
Nairy and her parents walked into countless clinics and hospitals in Jordan looking for a cure, only to walk out with medical reports certifying her illness as an ‘unknown case’. 'Back in the time, there was no awareness among doctors in Jordan about a disease called Juvenile Rheumatoid Arthritis,' Nairy says. As a result of several misdiagnosis, Nairy lost sight in her right eye at the age of five.
'I told her a disease is like a mother my sweetheart, you cannot abolish it from your life; pretty or ugly, we have to live with it,' says her mother.
Another challenge was awaiting her when she started searching for a school to enroll in. Private schools responded with rejections, which she speculates is related to her disability. This led her to attend a public school where disability-friendly facilities were close to non-existent and placed her in the middle of a conservative surrounding.
Through an issue of a royal decree, Nairy became the first female in Jordan to attend a hotel management school, and graduated with the highest grades in the Kingdom. She earned a B.A. in hotel management.
Professional path
Nairy's dream was to become a hotel general manager. 'I strongly believe that you cannot just start from the top, you have to start from scratch,' she says, explaining how she even applied for a position to wash the dishes at the kitchen of the hotel. But her overweight problem, caused by cortisone shots, prevented her from landing a job at a hotel in Jordan, which set her off to Dubai where she became the banqueting manager at Le Meridian and later at the Intercontinental hotel.
The result was a work of collaboration with Le Meridian hotel general manager. Every month, the two arranged a charity function for kids battling cancer; the ballroom would be filled with balloons, face painters, games, buffets and Nairy would dress as a clown to entertain the kids. 'They used to call me Mama Nairy,” she says smiling.
At the age of 30, Nairy returned to Jordan. She enrolled at the German University for an MBA in management and decided to establish an Arthritis foundation. Along with a rheumatologist, she contacted around 2,000 patients for almost a year for assistance and 'we ended up with only 25 volunteers.'
'In this age, I am very happy that I got ill. I appreciate it. But at the same time I'm paying for it,' she said. Arthritis is a disease that inflicts joints causing a dysfunction in mobility. Nairy believes that factors that can control the regression of the disease are the availability of medication, the patient’s will for life, and the support from the surrounding environment. 'The disease has to adapt to me, not the other way around,' Nairy says. She tames her daily morning muscle stiffness through her dancing techniques to the meticulously picked music tracks for 30 minutes under boiling hot water, allowing blood to circulate her body. 'Music,' she says breathing out, 'brings transparency into my life. Music for me is a language that is capable of conveying my feelings,' she continues with a wide, dreamy smile.
The Jordanian Rose of Hope Society for Arthritis Patients
Today, Nairy’s mission is to become the voice of the Arthritis society in Jordan. Among the problems facing this minority, to name a few, are the culture of silence, public’s lack of empathy and exaggerated sympathy, affordability and availability of medicine, lack of specialized fresh blood doctors, lack of facilities and the abundance of opportunistic doctors. “In all of Jordan, we only have 16 rheumatologists,” she says. Since the Ministry of Health has no statistics on Arthritis patients in Jordan, Nairy and a rheumatologist plan to prepare a study to reveal the numbers and conditions of this forgotten group but have no technical or financial means to start yet.
Nairy operates her foundation from her bedroom with minimal help received. She says the Arthritis society needs to interact with others and be heard; it needs hard-working members and the acknowledgement that the disease is equivalent to slow death, “as long as we’re living, we are dying day by day from the pain”. Her association needs sponsors, financial support and a bus.
She believes patients should not only be concerned with physical treatment but should invest in their high moral and spirit. 'I am so blessed to have my supportive family,' Nairy says. 'At the end of the day, I don't want to know that there are people suffering what I suffered from.' She organized the first World Arthritis Day in the Middle East in Amman on Friday, October 16, 2009. At the event, there was an occupational therapy stand, doctor consultations and live demonstration of physiotherapy every hour. She has committed herself to holding the event every year since then.
Since I wrote the article about Nairy, life has led us in different paths, until a week ago when I decided to contact her again and see what happened to her dreams, after three years. What I found out, however, was not what I had hoped for. Nairy had earned her masters degree, and ever since then has been trying to find a job. Her sister continues to bear her life expenses and she has a couple of court cases pending related to her animal rights activism (in a country where animals rights are the least of concerns).
But a number of phrases continue to ring in my ear from the three-year-old interview with her mother: “She always used to tell us that in the future you will be proud of me. Intuition tells me that the Jordanian Rose of Hope Society for Arthritis Patients will become as big as the King Hussein Cancer Foundation and will help as many people.” and her older sister, Analid, who wants Nairy to expand her foundation across all Arab countries: 'This vehicle doesn't have breaks or reverse, it only accelerates forward.'
