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Journalism of Courage
In 2007, Seema Sood, now 53, petitioned the President of India for euthanasia as years of rheumatoid arthritis had left her bedridden, in extreme pain and completely broke. Though she had a tall frame at 5’9”, she lost all muscle mass and at one time weighed just 36 kg, her hands grossly deformed. But her doctor didn’t give up on her, trying out innovative therapies. It was on a good day between sessions that he asked Seema, who loved to paint in her younger years, to take it up again. And things changed the day she drew a red rose. “I could almost feel its scent. My friends saw it and encouraged me to do some more works, exhibit and auction them to raise funds for my therapies,” says Seema, panning the wall in the reception area of Fortis Mohali, which has dedicated it to her paintings.
Dr Anil Abrol, Consultant, Department of Rheumatology, hand-held Seema while pulling her back from death and helping her reclaim her life. Today as she sits at her home studio in Palampur, painting red poppies as part of her series on flowers in acrylic, she says, “the day I drew the rose, I forgot my pain. It gave me confidence to move my limbs, brought me alive and value myself.” Dr Abrol used painting as therapy and creativity as an empowerment tool. But it was the main therapy that he had to modify constantly given the complicated nature of her arthritis and years of misdiagnosis.
Rheumatoid arthritis, explains Dr Abrol, is an auto-immune condition in which the body’s immune system attacks healthy tissues. The condition causes pain, swelling and stiffness in the joints and may result in low red blood cell counts besides inflammation around the lungs and heart. “Early diagnosis is paramount, particularly in the first four to six weeks. Then deformities do not develop and the drug efficacy is high,” explains Dr Abrol.
As it is an auto-immune disease, the triggers can be unpredictable, be it changes in weather or viral infections. That’s why, he says, we must not ignore signs like early morning stiffness, which increases while resting and persistent joint pain. “It starts in the 20s and 30s, women being more predisposed to it. A balanced diet, maintaining a healthy weight and avoiding smoking are important in the condition, and the key is not to ignore any symptoms,” says Dr Abrol.
Seema complained of pain as early as 1986 and was put on painkillers and steroids as she was misdiagnosed with osteoarthritis. By 1991, her condition worsened and she was taken off steroids after passing out one day. This led to severe contracture of her limbs, so much so that she was on assisted living and bedridden for the next five years. A BITS Pilani engineer, Seema could never reconcile to a life of dependence and felt guilty about draining family resources. She opted for a surgery in 1999, hoping it would give her some mobility and she did manage to walk with a stick for some time. But in 2004, she had a relapse. “By then my family had consulted many specialists and spent money on therapy and medicines. We had to travel frequently between Palampur and Chandigarh. I was advised joint and hip replacement surgery, costing about Rs 10 lakh,” Seema recalls. By then, her father had passed on, and her mother was getting old and frail.
Unable to afford the high cost of treatment, including physiotherapy sessions, staff, and medicines, and sinking deeper into depression, Seema sought euthanasia from the President in 2007. However, Himachal Pradesh Chief Minister Prem Kumar Dhumal assured her that the state government would incur all her medical expenses. Even though she underwent surgery in 2008, she kept experiencing acute pain and discomfort for seven more years. That’s when she chanced upon Dr Abrol at Fortis Mohali in 2014 who diagnosed rheumatoid arthritis and decided to treat her for free. Following extensive treatment, Seema began to show signs of improvement.
“When I first met Seema in 2014, such was her pain that we needed three people to make her sit. Mentally, she had given up with no backup, support or financial help. Also her gastrointestinal system was not able to tolerate medicines,” says Dr Abrol. From disease-modifying drugs to targetted biologicals (injections) that are designed for arthritis and reach particular cells to target inflammation, Dr Abrol went all out to give his patient the latest and best treatment for rheumatoid arthritis, with a reputed pharmaceutical company writing off the costs as part of its CSR. As she improved and regained some bit of body confidence, he motivated her to develop a creative hobby. “The appreciation for her work really did wonders for her confidence. She has now put on some weight, gained some muscle mass and feels more in control,” says Dr Abrol.
Seema remembers buying a colouring set for Rs 10 and a drawing book for her first painting. “I shared my condition with my BITS batchmates and not only did they help me financially, they even organised exhibitions and helped me sell my works so that I could be independent. As winter approaches, the inflammation will increase and it will be tough to sit and numb the pain, but I will keep trying. There’s no going back,” she says, as she gets the tonality of a petal just right.
