The remarkably cheerful Smitha Sadasivan doesn't agree. This 35-year-old disability rights activist from Chennai (India) has Multiple Sclerosis (MS)
and the above scenario has been her reality. Battling such a degenerative disease
can be tough enough without the added stress of wondering if you can afford the treatment. Smitha is extraordinarily positive about it and doesn't let her lack of finances affect her. She calls living with MS "an experience that makes you stronger".
There is no self-pity
- you only see a woman with Zen-like calm and indomitable will.
For the uninitiated, Multiple Sclerosis
is a neurological disorder that affects the central nervous system, where the myelin that covers your nerves tears away. This affects movements of limbs, cognitive abilities, vision and so on. While symptoms and its implications vary with each person, there are two things that are common: no specific symptoms can lead to a diagnosis of Multiple Sclerosis and treatments are expensive, to say the least.
October 1999 - A Series of Health Issues but No Firm Diagnosis
Smitha's introduction to Multiple Sclerosis happened in October 1999, when, as a college student, she began having a series of medical problems. "I was doing B.A. Literature at Queen Mary's College, Chennai. For almost 2 months, I had no appetite and was exhausted all the time. I couldn't see clearly - I was seeing everything in double. I had pain in the neck and ribs, vomiting, inability to urinate or clear my bowels for a week and, weakness and painless cramps in my limbs. In less than 2 weeks, I couldn't feel my limbs,"
she narrates matter-of-factly, giving us an insight about living with Multiple Sclerosis.
She was rushed to Kilpauk Medical College (KMC) in Chennai - a government institution, where she was admitted into the general ward. "My inability to urinate made doctors suspicious and that's when a neurologist got involved. They did a lot of tests and prescribed steroids."
But there was an unforeseen problem that prevented Smitha from getting her medicine on time. "I was admitted on Friday and steroids were prescribed on Saturday. The chief doctor hadn't come that day and without her signature, steroids cannot be given to the patient. I didn't get my meds until Monday."
So she was shifted to a private hospital where she was diagnosed with Demyelinating Radiculo-Myelitis
(an inflammation in the spine) plus urine infection
. She was prescribed methy prednisolone injection there.
After discharge, she slowly regained her strength to walk but she felt as though there was a hard band around her ribs all the time.
Except weakness, there weren't any serious symptoms for about 6 months.
November 2000 - Diagnosis and Several Episodes
Smitha went back to college and despite physical discomfort, she continued attending classes, when, in April 2000, she again developed similar symptoms - vomiting, neck pain, blurry vision and eye pain.
She was admitted again to a private hospital where, after a series of tests, she was diagnosed with Remitting Relapsing Multiple Sclerosis with the possibility of neoplasm
(abnormal multiplication of cells that eventually form a tumor). "Doctors said this was a debilitating disease and that it was a lifelong problem. It was surreal. I was a karate student. I used to be a state champion in essays and debates. Even in college, I was on academic tours every week. I couldn't understand why this was happening to me."
She was put on medication that includes vitamins, antibiotics and steroids such as one gram of methyl prednisolone IV for 3 days. Though Smitha was able to walk very slowly, she began developing painful cramps in her hands and legs and also suffered from giddiness.
The same year, Smitha had to be admitted five more times - June, August, September, November and December - with different medical problems associated with Multiple Sclerosis, for which she was given an assortment of medications."Except the years between 2004 and 2007, I cannot think of a single day, when I haven't been on some kind of meds - vitamins, antibiotics, painkillers, histamines, steroids...you name it, I have taken it!" Steroid injections
like Methylprednisolone and Decadron, and Eptoi, Becozinc, Elkar, Lychofen, Amifru, Bachlofen, Alprazolam, Rantac and Pantodac are some of the medications that Smitha has been consuming for more than a decade. Such a cocktail of medicines inevitably led to severe side-effects ranging from ulcers, muscle weakness and extreme hunger pangs followed by vomiting, to hair loss, severe drowsiness, itchiness, rash and hives, among others.
Symptoms Exacerbate Frequently
She tried to attend college regularly but had to discontinue because of the side effects and illness. Her professors, however, did not give up."They gave me full attendance and encouraged me to study. They supported me financially too, and have been my rock until now."
During her third episode in September 2000, and for a long time after that, Smitha went into depression."From an active college student with dreams about my future, I became this sickly person with Multiple Sclerosis who needed help with every step she took. I was at home more than I was in college. My friends visited me often but I was lonely. I didn't know what 'future' meant for me. I think more than all the physical pain, it's the mental agony that was unbearable."
Smitha experienced varied levels of pain all over her body.
Her neck would hurt so much that she was unable to turn without screaming. Her hands and legs would cramp painfully and would turn inwards to her body. And then there were also times when she couldn't feel her limbs at all. She had severe stomach ache, vomiting, and blurry vision
When she was admitted in December 2000 to Government Hospital in Chennai, Smitha suffered from Steroid Induced Duodenal Perforation
— ulcer had burst due to steroid consumption and created a hole in her stomach. She underwent major abdominal surgery to close the perforation. She couldn't see clearly and had very little sensation in the left half of the body. She was again on a combination of meds with triple the dosage strength than before, which gradually reduced her symptoms of Multiple Sclerosis.
Academic and Professional Achievements
For the next couple of years, Smitha was in and out of the hospital for sudden weakness of limbs, lack of muscle strength and problem with urine retention. She was given medications, whose dosages increased in strength. It made her drowsy and weak but somehow, she found the will power to push through and received undergraduate degree in Literature
in 2003. "My college officials were so accommodating and understanding. They arranged a scribe for me to write the exam - I didn't ask them to; they did it on their own. I couldn't sit for the entire period of the exam. So they allowed to me to lie down on one of the benches in the classroom. I gave my exam lying down...how many students can say that?"
But Smitha wasn't sure if anyone would hire her due to Multiple Sclerosis. Again, her college professors came through and put her on a path, which, even more than a decade later, gives her a sense of purpose."One of my professors, K.M.Kanthi, referred me to Vidya Sagar, a Chennai-based NGO for disabled children. That's where I met Poonam Natarajan, founder of the NGO, who is my inspiration and strength. She gave me motivational books to read and spoke a lot about living with disabilities. She trained me and gave me a job, and a bed, which I use frequently, as I cannot sit for more than an hour."
After 2003, Smitha did not look back. While holding a job, she pursued her academic interests and became a graduate in M.Sc. Psychology
from the University of Madras. She also did M.Phil
at Annamalai University and published her thesis title, 'Job Satisfaction and Organizational Climate Among Employees in NGOs and Government Establishment'.
The Wonder Treatment Called Acupuncture
Between 2004 and 2007, Smitha was able to go off her medication completely, all thanks to acupuncture
treatment and certain herbal concoctions."Until 2002, I was barely able to walk without help. But when I began acupuncture treatment in 2003, I began to feel better. I was on meds for just over a year but eventually I stopped taking them. I could walk continuously for 10-15 minutes, and after resting, I was able to sit for a long time. The number of times I had to lie down due to exhaustion reduced drastically."
She also joined Art of Living in 2004 and took meditation classes; she continues to practice those life's lessons till today. It keeps her calm, helps her think clearly, and develop positive thoughts. It's one of the reasons she was able to compete in the Regional Abylimpics (a vocational competition for persons with disabilities) in 2005, where she won first and second places in indoor photography and outdoor photography respectively. Buoyed by the win, she participated again in National Abylimpics the following year. "I got 9th place only!" she averred. "I could not perform better due to unbearable cold. MS has made my body very sensitive to extreme temperatures...I become restless too."
In 2006, she attended the 7th National Women's Conference in Kolkata.
In 2007, her acupuncturist, who did not charge her penny, shifted his house and due to the long commute, she was unable to continue the treatment. She relapsed and, within a few months, her symptoms came back with a vengeance.
Relapse, Ayurveda, Art of Living and Interferon
In July 2008, she suffered from chronic fatigue and couldn't lift her right leg. She was admitted to GH and was put another dose of steroids, antibiotics, antacids and vitamins.
As quickly as she became better, with a few months, Smitha's health worsened. In December 2008, she began losing all mobility in her limbs. She was given Methyl Prednisolone injection again, which led to further complications."My face and hand became swollen and I developed rashes all over my body due to allergies from the injection. I was rushed to the ICU where I was given Avil injections three times a day. When I was discharged, my doctors stopped all medications, except Cetrizine tablets."
Multiple Sclerosis took such a massive toll on her physically and mentally that Smitha even tried Ayurvedic treatment
for a while but in vain. Problem progressed further and in March 2009, she was admitted again. She wasn't able to move her legs.
It was a severe relapse of Multiple Sclerosis. Even after 10 days of medication, she continued to have severe knee pain and was diagnosed with Rheumatoid Arthritis. She was given an antibiotic for Arthritis and was also put on a weekly dosage of Interferon Beta 1A injections and other supporting tablets.
Interferon injection is an immune-suppressant. When you start taking it, you have to continue taking it for life. Four injections of Avonex, the kind of Interferon Smitha was on, cost Rs.35,000 - this in addition to doctor's consultation fee, commute, nutritional supplements, protein diet and other vitamin tablets.
Smitha did not have the means to pay for the injection on her own."My meditation teacher at the Art of Living center volunteered to raise funds and they did so for 6 months. My professors and friends from the disability sector helped me raise funds. My father's brothers gave me food and accommodation. They've all been supporting me so far."
Soon after discharge, Smitha went for a 19-day Ayurvedic massage therapy, after which she began walking again. But soon, even that had to be stopped as she developed painful cramps. When she improved within a year, she promptly went back to work.
Active Professional Life
Smitha has had a busy work life and has juggled with hectic schedules. Here's a sample of her accomplishments...
To make the Indian Census
include maximum number of persons with disabilities in 2011, Smitha conducted various rallies, workshops and campaigns all across Chennai, and even made short films with celebrities between 2010 and 2011.
In 2012, Smitha traveled to the US
with her mother to attend the annual meet organized by Women's Institute of Leadership and Disability in Oregon, USA."I spent 3 weeks there and I loved it! I think quality of life is much better there - I didn't have cold, fever or asthma attack, though I was traveling extensively with the team until 10pm. Weather was perfect - mild temperatures are best for people with Multiple Sclerosis, as it prevents tiredness and body pain."
She did not stop there. The same year, she conducted a workshop on sexuality and reproductive rights of disabled women in Chennai and published a primer
on the same in accessible formats in 2013. She has worked with many mainstream women's movements that include disabled women in their agenda. She represented the Indian disability sector
in the Skoch Foundation's Financial Inclusion Summit 2013 held in New Delhi and presented a charter of demands that she collated from the Indian disabilities sector. "Advocacy is my role,"
she says proudly."I have conducted workshops for persons with disabilities to make them aware of their rights, and on sensitization for magistrates in Tamil Nadu, architects of public spaces and even media people. I even take-up individual cases and issues."
She highlighted the case of Miranda Tomkinson
who had vision and hearing impairment. He requested the University Grants Commission (UGC) to allow him to take the National Eligibility Test (NET) in 2013 using Braille, but the UGC refused him. "He had two Masters degrees, and yet he couldn't appear for the UGC exam. When he filed a case demanding his right to a question paper in Braille, I coordinated the case in Madras High Court. We won the case and for the first time in India, a person with disability was able to write the UGC exam with a Braille question paper."
She has also contributed towards a bill titled 'Rights of Persons With Disabilities 2014',
which is framed in line with the UN Convention on the Rights of Persons with Disabilities.
Smitha currently works on various research areas related to disabilities and accessibility,
and the findings will be published by end of 2015."I have conducted a study on accessible treatment facilities in hospitals in Chennai. I have collated issues faced by persons with disabilities while dealing with the Indian insurance industry and about to file a case at the Madras High Court. I have organized parliamentary training programs in Chennai on how to address our issues in the parliament and state legislative assembly. Currently, I'm involved in a research study on employment rights of the disabled with Disability Rights Promotion International."
Smitha's Livelihood is her Mission
Being on immuno-suppressants and other medications has made her susceptible to infections like cold, fever, urinary infection and sometimes, asthma. Till today, she has been taking meds for that too. She had to discontinue certain drugs due to its side-effects but her symptoms prevailed. In addition to her weekly dose of Interferon injections, Smitha continues to be on a variety of nutritional supplements, vitamins and painkillers. There are side-effects but that does not prevent her from pursuing a career.
Smitha is nothing if not passionate about her work in the disabilities sector. She is a proud member of the Disability Rights Alliance India
(DRAI) and 'Roads for All' group, where she works with the Chennai Corporation to make roads, pavements, bus stops and public toilets accessible for persons with disabilities.
"There are thousands of people in India with various kinds of disabilities, most of which are not even listed under the current Rights of Persons with Disabilities Act. Even Multiple Sclerosis does not feature there. How else can we claim any benefits when we don't exist as per the law? Funds for the disabled should be a part of social security;
we shouldn't have to depend on charity to get by. Every single time, doctors tell me about Interferon, I have to raise money. It's not just the injection alone that's expensive — I need funds to buy health supplements, eat protein-rich diet and undergo treatments like intensive physiotherapy and acupuncture. As of now, my college professors, colleagues, friends and many strangers offer monetary and other kinds of support but it shouldn't have to be this way."
Though her job at Vidya Sagar keeps her busy, Smitha also works with other activists in DRAI towards policy changes and implementation of the disabilities law, make public spaces accessible, create awareness about disabilities and work towards an inclusive society. (This article is published solely for creating awareness about Multiple Sclerosis. Medindia does not endorse scientifically unverified treatments mentioned in this story.)