"I could not commit suicide. It was tough to hold a piece of glass in my hands. Else I would not have petitioned the President of India for euthanasia in 2007. We wouldn't be talking either," she smiles. Almost.
Seema Sood no longer looks like she does in her profile picture on Facebook. It must have been taken years back. The one in which she has long flowing hair and a typical Himachali girl's radiant face. With lush green trees in the backdrop, it looks like an almost studio-like photograph. She also does not have those thick spectacles on either.
Now she weighs less than 40kg.
|Seema Sood. (Image:Sandeep Sahdev)|
She is 47-year-old and started walking with a stick when she was merely 28. She has been bedridden since 1994, has two degrees from BITS Pilani - MSc in Engineering Technology and a Masters in Engineering. She scored 90 per cent and 98 per cent respectively.
"I have always been a gold medallist," she says, in a matter of fact tone. It was in 1991 that Sood started feeling the pain. It started first in the toes.
The trouble began in 1988. The doctors thought it was arthritis. But actually it was rheumatoid arthritis, an auto-immune disorder that results in swollen and painful joints, affecting them seriously. It may also result in low red blood cell count, inflammation around the lungs and the heart.
When in 2005, her condition deteriorated and she landed at Fortis, she was advised joint and hip replacement surgeries (her actual condition was not yet diagnosed) at a cost of Rs 10 lakh. Sood, whose father had died in 2000, and the mother, who is now 81, went quiet.
"I did not know what to say on hearing the cost of the surgery. I think that was the moment I knew that dying made sense… much more sense." The mother-daughter duo returned to Palampur.
After Himachal Pradesh CM heard of Sood's petition to the President in 2007, he promised that the state government would take care of the medical expenses for the surgical procedure. The surgery was conducted in 2008. Sood went back to her native place. And she also slowly went back to pain and discomfort. "I was back to square one. Disillusioned, I stopped coming to Mohali for follow-ups."
One day in 2014, she received a call from Fortis, asking about her condition. When she returned, the hospital promised to treat her free of cost. This time, her exact condition was diagnosed.
She is a bit tired now. "Tired also of telling my story. We ask the relatives to leave us alone. They leave, trying their best not to show their displeasure."
What if you did not have this disease?
"It has been my companion for so long now that it's hard to imagine life without it. Tragic, no?"
Why do you look outside the window while answering?
"A check-up for me is the only outing. I never get to step out of home."
How was life at BITS, Pilani? They say very bright people go there.
"It was so nice. Intelligent students, brilliant professors, such great facilities. I made many friends there. Mostly women friends."
What, no friends who were male?
"No, no, I did have. But they were just friends. No boyfriends. I was always busy studying. Yeah… I was always a gold medallist, right from Class 10. I was too busy, studying, all my life. Then this."
What do you miss the most?
"I have never seen a shopping mall in my life. I have only seen it on TV."
This is a fancy room.
"No hospital room is ever fancy."
"You should not have asked my doctor to leave. He has always been very good to me. He even spelled rheumatoid for you. We all have our 'diseases'. Don't worry, we'll call him when we need to know more spellings."
Must have been tough writing the… petition.
"Not at all. When one person in the family is handicapped, everyone becomes handicapped. My mother has crossed 80. She has to assist me in the toilet. We can't afford a full-time help. There is no income. The daily physiotherapy session costs Rs 600. You talk of the petition, not dignity. Sad."
If you didn't have this disease, you could have gone far, no?
"I would have been CEO of a top company. That was far for me."
Your friends must be big shots in top companies. Do you ever feel jealous?
"Envy. I loved engineering. I loved solving problems. I would not sleep without an unsolved equation."
In touch with batchmates? Do they know you are here, for a disease with such complex spellings?
[Smiles] "I never told them. I did not want their pity. But one day in 2014, the silver jubilee year of our batch, a friend messaged, asking if I would be attending. I could not stop myself from telling her… everything. She didn't say much. The next day, another batchmate, who now lives in Jammu, drove all the way to my house in Palampur. He just said, 'We won't let you die'. My house runs because of my batchmates settled across the world - US, Middle East, UK. And yes, some are CEOs."
You are painting nowadays.
"Yes! I have even made a painting for my mother. She does not know and it is going to be a surprise for her. My first painting was of a red rose. I bought colours for Rs 10 and one white chart paper. You must not leave before seeing all of them."
Tell me a bit about your doctor before we talk to him. "You know he is the best thing to have happened to me. We keep in touch via WhatsApp. He keeps telling me that I must not give up. That winning over the mind is the first step to recovery. He wrote emails to a pharmaceutical company to give an important injection free of cost. It was worth Rs 45,000. I would not be alive but for him."
The 36-year-old Dr Anil Abrol enters. The good doctor, the kind of a man who still wears an ironed shirt and trousers, and smiles often.
He says that when he heard about her case, he just could not hold back from asking the hospital authorities to get in touch with her, and ask her to come down for another medical examination. "Such a highly educated woman wishing to die because of a disease. It was a challenge. I had to see what was wrong with her," he says.
He recalls the first time she came to him. Sood had to be carried by two people. "She was emotionally shattered. It was the mind we had to work on first. I have always been in touch with her - talking to her, messaging her. I have one goal - she has to be made independent, no matter what. Initially, we could not put her on the right dosage. Her body was too weak to accept that."
She told us about that expensive injection. "It's called Rituximab. It took me three months to arrange for that. We finally got it from Dr Reddy's Laboratories as part of their CSR initiative. It has a 70 per cent success rate. You have no idea how hard I prayed that she doesn't fall in the 30 per cent category."
You are not charging a penny, your colleagues from other departments don't charge her anything?
"That does not matter."
Why are you doing all this?
"Is a doctor not supposed to?"
Why are you doing all this?
"Because somewhere medical science is still not just about money. Sounds clichéd?"
Why do you want to live now, Seema? I ask turning to her.
"I have hope."