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The Versatile Spirit

SwarnalathaMultiple Sclerosis

In this poignant film, Swarna candidly introduces us to the world of MS, articulating its impact on her life with grace and candor. She reflects on her blessings – a loving family with two children, her singing, and a flair for crafting short stories. However, Swarna doesn’t shy away from acknowledging the difficulties MS has woven into the fabric of her existence. With a dash of humor, Swarna also addresses stereotypes, particularly the misconception that people with disabilities aren’t considered sexual beings. The film crescendos to a powerful conclusion as Swarna serenades us with her melodic voice, leaving an indelible mark on our hearts.

Transcript

I feel that I am blessed with a lot of skills and talents.

Umm, Like I can sing, I can write short stories.

I am a winner of the Mrs India Beauty Pageant South in 2018 and I used to conduct workshops on puppet making and puppet shows.

I speak about 10 languages, write 6 languages.

umm, I have two children and 

Yeah, there's a lot that I can still do despite being in this condition.

I can still smile, I can still think, I can, I can

 I can stand up for myself even though I am sitting.

Come on, take, take, No, No, No, No

I am Swarna Lata J from Coimbatore.

I am affected with Primary Progressive Multiple Sclerosis.

Multiple sclerosis is a disease of the central nervous system which affects the brain and spinal cord and makes the person affected completely disabled.

In my case

Umm, initially when I got diagnosed in 2009.

I was neck down paralyzed.

Even my vision, speech were affected.

My bladder bowe;, movements of limbs, every activity got affected and I was put on steroids for one and a half months.

There after I regained 60% of my mobility, 40% I’d lost forever.

Whatever 60% was there I’ve been losing gradually because this is the primary progressive type and mostly for other patients affected with the same disease the deterioration starts from the eyes.

Which means that people lose their vision first, speech, then their swallowing ability, then bladder bowel then walking.

So, for me, it's from you know, down, you know from toes to head.

 

So right now, I can say that I have stopped till neck.

It's exhausting, physically, mentally, financially, in every possible way, not just for me but for my family also.

One is to handle the disease physically, is very difficult because I am in pain 24/7.

So, wherever you touch my body I am in pain and currently, if you see only my two fingers in the right hand are slightly functional.

And then, ya, my speech and vision are perfect.

But then rest of the things I am completely dependent on. 

100% dependent on people for things as simple as bathing, wearing clothes, wearing slippers, sometimes eating also, ya, mixing food.

So, all this.

So, that's not a nice feeling you know, being dependent on somebody.

When I started earning at the age of 14 and I had a full-time job at 18.

So now being dependent on you know, husband, children and maids, its something I have to live with. 

It's not a nice feeling.

Ya, when you take my case initially for the first 5 years, I can tell you that mornings I would be fine I would have more energy but by evening I literally have no energy at all.

And, I could not really comprehend why this happens, you know. 

I tried altering my diet, my lifestyle and no matter what I do, you know nothing works at the end of the day, it's like MS is laughing at us you know. 

No matter what you try I am not going to give up kind of attitude for MS, right

So, over a period of time, I realized that heat, I mean extreme heat and extreme cold also play a vital role in our lives.

And there is a moderate temperature that I can manage that is 26 degrees. 

Anything below that and above is just not my cup of tea.

So, I just can't tolerate it

I stopped sweating, I can't feel temperature sometimes.

My husband Dr Guru Prasad and I started Swarga Foundation in October 2014.

 

We work in the areas of rehabilitation, accessible travel solutions, accessibility, counselling, inclusion and awareness.

So, we are trying to fill in the gaps between the healthcare systems and government policies.

Sp, what is the point of all this education and experience if I don't put it to good use. 

So, the onus lies on me to make a change. 

To bring a change in the lives of people affected with similar disorders.

To work for the betterment of my community.

So, I took up the responsibility.

So that’s I think the purpose of my life.

That makes me get up every morning.

It says wake up and make up, you know

We tried to set up a state-of-the-art facility. 

We have benchmarked this with respect to American Disability standards.

So, with this, we could give a qualitative service to all our beneficiaries which is equal to whatever a private hospital is giving.

So, like right now I am sitting on a wheelchair. 

If I were sitting on a sofa, you would never know that I have any kind of disability, right? 

I would look absolutely normal when I am sitting on a sofa.

The spectrum was very huge, you know.

I really can't tell you how this disease affects each person because I’ve met at least 500 patients in my life till now.

And each one has a different symptom, each one is different from the other.

The ratio is 3 is to 1 which means when three women get affected only one man gets affected.

We have two children Gagan and Gaana. 

Gagan is 16, Gaana is 12 now.

So, I was diagnosed when Gagan was two years old.

So, 2 years after the diagnosis, Gaana was born.

Ya, I think everybody has made sex a taboo. 

They think that disability, they think that people with disabilities are not sexual beings, right?

They think that we are asexual, we don't have any feelings.

It’s absolutely wrong.

Most of the women I have seen look really hot, really pretty on the wheelchair.

I like to sing.

I like to talk.

I like to have sensible conversations.

I am a fun person, I like humour 

Chanda say poochayge hum saare sawaal nirale

Jharne kyun gaate hain, panchi kyun matwale

Woh kyun hai saawan mahina ghatayon ka

Chanda say poochayge hum saare saawal nirale

Chanda, Chanda

Titli ke par kyun itne rangeen hote hain

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