Are You In A Toxic Relationship? These 5 Signs Say Yes

Watch out for these 5 red flags of an unhealthy relationship. By Sonia Rao.
Any relationship, be it personal or professional, is ideally one of mutual respect and co-operation. But sometimes the share factor gets skewed and toxicity sets in. Often it is very apparent such as in physical abuse. In which case, it is best to run away from there, ASAP. But at other times, the situation slides downwards so subtly that it can be years before one realizes they are in a disempowering situation. 

Here are 5 red flags to watch out for to make sure the relationship is healthy and gives you the happiness you deserve.

1) Lack of trust:Pic Source

Doubt hinders growth. Without trust each person's inputs cancel out each other instead of becoming a vehicle of exponential expansion.

2) Only one-sided benefits:         Pic Source

You may be a fount of love and kindness but if you are the only one giving to the relationship before long you're going to be depleted and turn resentful.

3) Constant criticism:        Pic Source

When criticism is not constructive but only a means of one-upmanship and showing contempt, it completely jeopardizes the relationship.  

4) Cold communication:Pic Source

Intimacy first begins with speech before it turns physical. If each and every aspect of life cannot be discussed easily, without being judged, that's a huge red flag for the relationship.

5) Energy suck:       Pic Source

When spending time together drains you emotionally, mentally and physically, it's time to re-think your relationship.

Sonia Rao is the Editor-in Chief at Thriive Art & Soul.

I’m A Thriiver – Sonica Arya's Journey from Despair to Optimism

When a hit-and-run accident left her young daughter, Rayna, critically injured, Sonica Arya was determined to get her back on her feet. This is the story of how Sonica paved a way to a new life not just for Rayna but also for the many TBI (Traumatic Brain Injury) cases in India. Sonica shares with us, in her own words, her journey of going from despair to optimism, because as she says, “Till there’s life, there’s hope.”

“I still remember that fateful afternoon, five years ago, when I got a call that my 12-year-old daughter, Rayna, had been seriously hurt in a car accident on the Mumbai-Pune expressway (the driver had fled the scene). That was when the smooth tenor of our life was completely torn apart and my faith severely tested.

Life, till then, had been really good. To celebrate the fact that they were now pre-teens, I’d taken Rayna and her younger sibling, Myrra, for a vacation in Europe. They were two perfectly beautiful children. I was planning to put in greater focus towards my own career as an architect since the girls were grown up and fairly independent now. My husband and I were quite aware of the privileges we enjoyed. We felt deeply about giving back, so, in our small limited way we helped as much as we could: our children celebrated their birthdays with the children of the Salaam Bombay Foundation; we donated money.

Rayna was active and sporty and an achiever of sorts. Back in Europe, within 7 days she was already skiing on the black slopes. She was an accomplished Kathak dancer and a beautiful skater; it was a treat to hear her play the piano or watch the skillful way she rode a horse.

We loved traveling and often went together on family trips.

Faith was a way of life

My mother deeply believed in God and the temple at our home was almost like a living God. It was an important part of my own life: 30 to 45 minutes of my mornings were devoted to my prayers. In search of a deeper meaning I would travel to all those age-old places of worship which India abounds in. It used to be a standing joke between my friends that Sonica has suddenly left for yet another of her ‘trips’.

A hit-and-run accident that disrupted our life

I was in Mumbai though, when I got that devastating call that Rayna had been grievously injured in a car accident. No ambulances were available in Khandala or even Lonavala, so she was being brought to Mumbai in an ambulance from Panvel.

My heart clenched with fear but hoping for the best, my husband and I rushed from Mumbai and met the ambulance at Vashi from where we took her to the Breach Candy hospital. Through a friend in the Police we got the permission to bypass traffic signals but even then, it was quite late. Though they had put her on a ventilator, the delay in oxygen reaching the brain had caused immense damage. This could have been easily prevented if Rayna had been given proper aid within the ‘Golden Hour’ of the accident. At the hospital, they told us that Rayna had gone into a coma.

A school trip that went completely wrong

We had a lot of questions: Rayna was on a school trip. Why were she and the other children on the Highway? Where were the teachers? Why was there no first-aid available? Why are there no ambulances on the prone-to-accidents spots on the expressway?

But we had to keep them on hold because our first priority was getting Rayna back. Here she lay, comatose, unresponsive even as wires connected her to machines that kept her breathing.

It made us realize how precious and miraculous human life is. And how cheaply we let it go. I realized that if you don’t stand up and fight for whatever has happened it will continue, without making a difference to anybody.

Getting prayers answered 

And so, I took it up when I prayed for Rayna. This became an obsession. I was summoning all the energies in the Universe to help her, to give her the strength to pull out of that coma. I was praying for 15-16 hours in a day. People told me to pray and say things like “Do what is best for her.”

Sorry, but no! I said I want her back whole and I want her back home. I prayed, “Use me as your instrument from now on, in any way you feel I have to serve humanity, give me the permission but I want my daughter back whole.”

I had this zidd, this stubbornness, that I want her back 

After five and a half months, Rayna woke up. She could only blink. For a year, we fed her through the nose and then through the stomach. She couldn’t walk or do anything by herself. She used to communicate through a program on an iPad where she would write on it and it would speak back. We had to teach her how to speak again, and even to eat again.

A lot of the rehab had to be done abroad since such facilities were not available in India. At the Spaulding Rehabilitation Hospital in Boston, where Rayna was their first international patient, we saw others who had been severely injured in the Boston Marathon bombing. This made us realize that we are never alone in our suffering.

Neuroplasticity can make even half a brain work again

Later, we took Rayna to The Feuerstein Institute in Israel, which specializes in Traumatic Brain Injuries (TBI) and is doing path-breaking research in Neuroplasticity. It amazed us to see how each life is so precious for them. We met a person, a Commando, with half portion of his brain blown away. He was being taught how to think again and to do everything by himself. They don’t give up on anyone. It was a huge lesson for me and reinforced my faith to not give up on my daughter who was putting up such a fight against her condition.

The caretakers need care too 

Three years after the accident I felt depleted. The initial adrenaline rush and my willpower had kept me going: managing Rayna physically, her medical situation and rehab as well as going back to school with her. My body and mind had been on alert mode for too long. I was trying to be brave for everyone. But it had taken its toll and I was exhausted. I woke up mornings, sweating, with dreams of that call informing me of Rayna’s accident. I sought refuge in Past Life Regression Therapy with Dr. Newton, EFT, chanting. I meditated and studied Vedanta, did an e-journaling course. 

I realized I needed to let go. When our head, heart and hand are in sync, we are in sync with the Universe. We need to take care of ourselves and let the Universe do its work. It has also helped me to not be bitter. My husband and my daughter Myrra would often get angry with God for what happened with Rayna.

But in that too we can know God. We blame or praise Him according to our experiences of Life but I have to come to believe He is Pure Consciousness. He is the Grace He bestows upon us.

And this has been revealed to us in so many ways: in help reaching us at unexpected times through unexpected people, meeting the right doctors/treatment when we needed it most and even prayer groups I was not even aware of (I once received a global prayer chain message on the phone that said: add your name and pass it on for Rayna Arya), friends in Italy lighting candles for her in Church, bringing amrit from the Golden Temple and giving an ardaas there, getting the zam zam waters…it was all coming to my daughter.

Championing TBI rehabs 

Through all this, I always made sure that whatever rehab efforts we provided for Rayna we shared it with others. Rehabilitation is a must after any brain injury. As champions for the cause of hit-and-run accidents, we are working closely with Harkisan Das Hospital’s Rehab division and support group, where Rayna goes for her physiotherapy.

We’ve shared The Feuerstein Institute’s Trained Team that works with Rayna, with the Maharashtra Dyslexic Association and Sadhana School. They’ve trained the teachers at the Cathedral and John Connon School for Level 1 of the Enrichment programs.

Disability creates invisibility 

India is the brain injury capital of the world. We have very good doctors but even the neurologists have very limited knowledge of the rehab efforts needed. Even in routine life, the disabled / injured cannot travel easily for lack of facilities. They become invisible. This is frustrating for both the patient and the caregiver. Even in the case of children, we are working towards getting international norms being put into place, in situations such as crossing the road, guidelines to be followed by schools taking kids on trips and so on.

The message – “We don’t give up!” 

One never recovers fully from a brain injury. Managing it is an ongoing process for the rest of your life.

We live with the motto “ We don’t give up”. Rayna paints today and has held exhibitions. I take her abroad on holidays, as navigation there is much easier. I even took her skiing. She lay on the ski slopes and quickly made a snow fairy. Till there’s life, there’s hope. One day at a time.”

Special Soul Spots of Pondicherry, the Mecca of Meditation

The Serene, the Marine and the Green...nothing is amiss in Pondicherry. A journey to these 6 special soul spots of Pondicherry has all the ingredients of a Spirit Drive!
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The virgin shoreline and peaceful surroundings of the beach live up to its name. Perfect for hours of undisturbed meditation.
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Savour your inner silence at the Samadhi or in the large meditation hall in the Ashram. Revel in group energies of the Collective meditation held in the early hours of the night in the Ashram Playground (check timings and other details here

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Anytime from 6am to 9pm, seek a sanctuary under the lush trees and go Home to your inner Source.

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1500 plants spread over 22 acres of well-laid-out garden area will provide you a quiet niche as you oxygenate and rejuvenate your soul.

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Immerse yourself in the Sound bath even as the sound waves harmonize with your inner landscape to leave you relaxed and transformed.  


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The Mother described Matrimandir, the beautiful Golden Sphere, as "the Force, the central Force of Auroville, the cohesive Force of Auroville." The spacious Inner Chamber of the Matrimandir invites you to sit in silence and concentration, in search of your consciousness.

Wild Wild Country – A Review

A spiritual movement gone wrong? By Madhulika Arya

Wild Wild Country, a Netflix original series, is one of the best documentaries of all time. Added to that, the subject is the person responsible for the most controversial movement of modern times – the Indian spiritual Guru – Bhagwan Rajneesh also known as Osho by his followers all over the world.

The struggle of a self-sustained global spiritual movement trapped between conspiracy theories, assassination plots, bio-terror attacks, corruption, violence, murder, utopia, charges of illegal occupation, anti-establishment, of moral, social and sexual decadence, to name a few, is a must-watch.

Directed by brothers McLain and Chapman Way, the series, spread over six episodes of about 60 -70 minutes each, was released on 16th March 2018.

Watch the ironical saga of struggle between Rajneeshpuram (Oregon), a global settlement of the seekers of Freedom, and America, the land of the Free. In 1981, a large number of Rajneesh followers, who called themselves the Rajneeshees, bought huge chunks of lands in faraway ghost lands of America and in doing so, these settlers unsettled the social status quo. Watch every narrative triggered from fear, hate, suspicion and anger to love, desire, peace and freedom.  Nothing has immunity from Power and the struggles leading to it – not even spirituality!

The most striking feature of this well-crafted documentary is that it will make the viewer on either side understand and ponder the perspective of the other side. It therefore delivers a picture in totality - a wholesome perspective on the entire happenings of that time and the people caught in it. The Wikipedia page puts it under the genre, “crime documentaries”! Ironical indeed that a worldwide movement of spiritual awakening has to be described thus – no matter which side you’re on!

Take away for Perspective One: “Power corrupts, and absolute Power corrupts absolutely?”

Take away for Perspective Two: “Freedom is never voluntarily given by the oppressor; it must be demanded by the oppressed!”

And so, the struggle between creation and destruction continues…do we sustain on its friction?

(Madhulika Arya is the Content Manager at Thriive Art & Soul)

Nature Farms

Pure food gives the body pure energy. Harmonize your inner energy body and outer environment with life-affirming, organic produce from these Nature farms:

Vrindavan Farms:Pic Source

Mangoes, moringa and masti. The trio of organics does not end here: get naturally grown fruit, herb, spice, produce & a host of infusions, including holistic tisanes, fruit preserves, and brines inspired by the five Great Elements (Pancha Mahabhuta). Spend a day at the Farm learning how Slow Food is grown or else just order in your weekly quota of fruits and veggies. 

Sankalp Farms: Pic Source
You’ve not eaten mangoes till you’ve eaten the ones from this farm. Grown with holistic methods that protect the soil as well as the environment while providing a decent livelihood to locals. Spend a day here, gaze at the lake after a delicious lunch made by locals, or join in for cooking sessions by experts chefs.

Under the Mango Tree: Pic Source
Honey is called the food of the Gods. It’s easy to channel your inner God at breakfast with the wide variants of this 100% pure, ethically purchased, community-empowering honey.

Looking for the latest, exhilarating, art and soul experiences to please the hidden explorer within?

Thriive lists the 4 most happening festivals around the world:

Hay House U Live!:

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A comprehensive conference that gives you more time with your fave authors with intensive workshops and in-depth explorative learning. Bring family and friends along for added fun.
19-20 May 2018 | Toronto, Ontario

The MindBodySpirit Festival:

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Rejuvenate your body and soul with inspirational seminars, body pampering, stage performances, meditation and some delicious health foods!
24 - 27 May 2018 | ICC Sydney, Sydney, New South Wales
08 - 11 June 2018 | MCEC South Wharf, Melbourne, Victoria

Burning Man 2018:

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All are invited to this crucible of creativity dedicated to community, art, self-expression, and self-reliance. Theme for 2018: I, Robot.
26 August - 3 September 2018 | Black Rock City, Nevada

Mevlana Whirling Dervishes:

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Watching the Whirling Dervishes will expose you to the power of devotion and show you that spinning can do more than just make you dizzy.
December 2018 | Konya, Turkey

If Music Be The Food of Love, Play On!

65% Off! And ‘tis no SALE! (*hint: it's music that reduces stress)

Shakespeare said, “If music be the food of love, play on!” So, if you’re feeling out of love, it’s time to tune into inner love! Immerse yourself in soothing music and just open up your heart! Yes, music of certain frequencies can resonate with our brain and heart cells and have an empowering, rejuvenating effect.

And we have research to prove it! In an experiment, Dr. David Lewis-Hodgson of Mindlab International attached sensors to a few participants and asked them to solve difficult puzzles. Different kinds of music was played throughout. Of course, their brain initially registered a lot of stress.

But amazingly, 10 songs and music switched the brain to relaxation mode and resulted in the participants solving the puzzles faster and more correctly.  BY 65%!!!

Yes, the list of those songs is here!

Wait, there’s a warning, though!!!!

This particular music is soooo relaxing that one is forbidden to hear it while driving.  But, if insomnia and mood swings are your constant companions, you know which song’s gotta be in that pod, right? For the aficionados, we’ve got 10 hours of that song:

Weightless By Marconi Union

Here are the other 9:

9. We Can Fly by Rue du Soleil (Café Del Mar)

8. Canzonetta Sull'aria by Mozart

7. Someone Like You by Adele

6. Pure Shores by All Saints

5. Please Don't Go by Barcelona

4. Strawberry Swing by Coldplay

3. Watermark by Enya

2. Mellomaniac (Chill Out Mix) by DJ Shah

1. Electra by Airstream

Enjoy! Mood-uplift, guaranteed!

Spiritual Backpacking: Travel To the Centre of Your Soul by Neeta Jhaveri

Even when everything’s going well in life, if you feel something is missing or you need to do more with your life, a spiritual journey could be what the doc prescribed… a journey of evolution, a journey into yourself. Thriive WSP and Tarot Card Reader Neeta Jhaveri also organizes spiritual journeys and one evening we decided to ask her to tell us more about them, especially for first-timers.

Thriive: Neeta, what is a spiritual journey?
Neeta Jhaveri: It’s about energy. When we go on vacations, we are used to a form of travelling which mostly involves a hectic spree of sight-seeing and shopping. This is completely the opposite. There is a lot of energy but it is focused within. You meditate, a lot. You travel, meet like-minded people, imbibe the culture of the place but most of the time is spent in silence. Much of it involves letting go of the clutter that’s in the mind. Also, you kind of find your own self with so many people. You feel that you belong. And the best thing is that one can undertake these journeys even with one’s family.

Thriive: What is the difference between a religious journey and a spiritual one?
Neeta Jhaveri: In India, religion is deeply entwined with a person’s daily life. One of the things they recommend very highly is religious journeys or what we often call as pilgrimages. These are mostly ritual-centric with well-defined rules and regulations. Washing off of sins seems to be an overriding aspect of these visits. Spiritual journeys, on the other hand, are more about going with the flow and finding your own answers. The long periods of silence and contemplation, that characterize a spiritual journey, help you to connect with your Higher Self.

Thriive: For someone who feels they’re not yet ready for spirituality, how can they prepare for such a journey?
Neeta Jhaveri: Go with an open mind. This is the best way of approaching anything new in life, and that includes spiritual journeys. If you feel you’re not ready to go alone, go with a group of people. Check out the organized tours which include your primary interest: If you are a water person, you might want to go a tour near a beach. If you are an adventurous person, explore the possibilities of a trip to the mountains. Rock climbing can be meditative as you bring in all your attention to the act. Take baby steps. Go with your personality, your health and your physical strength. Build yourself up a little more every time you undertake such a journey. Begin with guided tours that include guided seminars and meditations as part of the package. In the beginning you need not even travel out of the city. Start with a nearby place. Do it for two days. Like a warm up. Inculcate patience and easy-going-ness. Some things might work for you or they might not. But one always comes out with some benefits. You might go with pre-conceived notions but might come back with totally different insights and experiences. Once you go through a few of them, you can then seek off on your own. 

Thriive: What according to you is “open-mindedness”?
Neeta: Respecting the other person and their choices. You will see a lot of it in the case of food choices.  If you are vegetarian and uncomfortable to be in a place where non-vegetarian food too is served, don’t join that retreat. Choose what works for you but if you don’t get what you want, accept the alternatives as the free will of the other person.

Thriive: Are there any physical and non-physical preparations that one can make before embarking on a trip of this sort?
Neeta: The most important thing is comfortable attire. You are going to spend a lot of time in Nature. If you feel too hot or too cold, or your footwear is uncomfortable, you will not be able to concentrate. Check out the place for availability of the food you eat. Organised tours take care of everything. Prepare to eat light food. Not just your body but even your energy-body will feel lighter and aid you in meditation.

Thriive: Which are the places in India which are popular for such spiritual journeys?
Neeta: It depends on what you are inclined towards. Goa is a very popular retreat. Once upon a time it was the hub of hippie culture. Today it has many yoga retreats that provide a soothing experience. As I mentioned above, if you have an adventurous streak you can attend retreats in Ladakh and Rishikesh. Bhutan is wonderful as are the monasteries in North India.

Thriive: What inspires somebody to seek out an experience of this sort?
Neeta: Usually when you are down and out, you feel like things are not working, you’re always seeking answers. You go to a Tarot card reader, and say, “Healer, help me! Help me!” They will help you as much as they can and then give you recommendations to go to the next level. You feel like, “Okay, there’s a group meditation, let me go for that.” You go and find it amazing and then you decide to sign up for a workshop. Maybe this workshop is somewhere abroad, or in another city in India. You feel motivated to give it a shot. And this is how the journey carries on.

Thriive: What has been your most memorable journey till now?
Neeta: Two of them stand out immediately in my mind. This was two years ago when three of my friends and I went to Sedona. We had our own van. We met a woman who would drive the van and also guide us for the meditations. We stayed at the hotel but every day we drove to the river where we would meditate. We participated in shamanistic rituals using fire energy. We climbed a mountain that was an energy vortex. We then drove to the Grand Canyon. At one time we were in the middle of nowhere, with only one Inn. We stayed there. Between travelling, manifestation, meditation and enjoying the place, with a schedule we had made ourselves, it has been a memorable experience.
At another time, I took my husband to Egypt and made him meditate in the middle of the Pyramid. The energy is the strongest there since it is considered to be the Centre of the Universe. From being a non-believer he turned into a hard-core believer. He still tells me, “Neeta, that was the best trip of my life.”

Thriive: Thank you, Neeta, for sharing your insights and knowledge. Much appreciated.
Neeta: It’s been a pleasure.

Make sure these 5 Indian Superfoods are on your plate in 2-0-1-8

Your newsfeed might be full of 'superfoods' like acai berry, chia seeds and what-not, from around the world, each one promising a fitter body and a happier life if you consume them. But it's actually better to think global but eat local. India is blessed with nutrition-dense, healthy foods, so make sure you've got them on your plate in 2-0-1-8. 

1) Buckwheat aka Kuttu: Vegetarians, rejoice! Here’s your alternative to egg white - containing 8 amino acids with magnesium and potassium. No wheat, only buckwheat! (for you, gluten-intolerants). Buy it here:
2) Lotus Seeds aka Makhana: Rockstar of snackfood. Dry-roasted, it makes a nice, low-cal, crave-buster. Can be added to curries and desserts for the added oomph. We get ours from here:
3) Indian Gooseberry aka Amla: School days are memories of amla bits eaten with a mix of salt and red chili powder. It was the Vit. C in it that boosted our immune systems and now that they are older (slightly, hehehe) it helps us in our weightloss and anti-aging efforts. What's not to like! Get it here:
4) Drumstick Tree aka Moringa: Gifting flowers takes on a whole new meaning with morings flowers. A rich source of antioxidants, proteins and calcium, it can be eaten fried, roasted, curried or 'raita'-ed. Yes, even as a tea. Buy it here:
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5) Indian Basil Seeds aka Sabja: They've got the cools! Soak them in water and see them fluff up into powerballs of vitamins and iron. Add them to your fave cold drink (we love khus) to relieve constipation and bloating. Get them at:
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I’m A Thriiver - Shital Bhatkar

When Shital Bhatkar lost her young son to a rare disease, it changed not just her life but also the life of a lot of other people. Shital’s story, in her own words…

The most unbearable fate that can befall a parent is that of losing their child. And the only way it can become bearable, in a small measure, is by helping to lessen the pain of others.

It began well, though.

When I held my beautiful baby boy in my arms, I felt contented. “Our family is now complete,” I said to my husband and my 5-year-old daughter as they stood around my bed at the maternity hospital.

Things were going well till Aarya, our son, was already one and half years old and not yet walking (a growth milestone which is generally achieved at one year). His tummy too seemed swollen.

A Rare Disorder

The paediatrician didn’t have much to say but referred me to a neurologist, Dr. Udani, who took one look at Aarya and said he suspected a storage disorder. This was a term we were hearing for the very first time in our lives. We did the tests suggested by the doctor but they only diagnosed Aarya as being anaemic. We heaved a sigh of relief. A few months later, he was admitted to hospital with typhoid. Dr. Udani was one of the doctors allocated to him and when he saw Aarya, he prescribed a bone marrow test. We got it done once Aarya was better.

The results confirmed that it was a storage disorder disease.

This is a rare, genetic disease in which one enzyme is missing and so the fat cells are not synthesized. They end up accumulating in the vital organs like liver, spleen, lungs, bone marrow and brain and can be fatal. This affects 1 in 100,000 people and around 500 cases have been diagnosed worldwide.

I had completely blanked out as the doctor explained this disease to us.

On the doctors’ advice we sent a skin sample to the world’s only NPC testing center that is in Netherlands. It took so long to reach that it got spoiled in transit. The result of the second sample confirmed it was storage disorder. And worse, it was the Niemann Pick C (NPC) type, which has no cure. The life-span of a child afflicted with NPC was not more than 6-7 years.

A Ray of Hope

This was earth-shattering for us. But we did not want to give in so easily. We showed him to many doctors and pursued many alternative therapies: homeopathy, ayurvedic, flower therapy. Nothing worked. We combed the internet for sources and information. One such search led us to a Switzerland company which manufactured capsules that were supposed to be a cure.

They were extremely expensive: Rs.5 lakh for 90 tablets. The company would give the medicines only to a hospital or pharmacy. We requested a pharmacist friend to help out. There were excise and import hassles too. But finally we got the capsules but nobody could tell us about the correct dosage. None of the doctors we spoke to had even heard of this disease. We were stuck.

Luckily, we connected to the doctor who was the inventor of the medicine and he began to guide us for the dosage. It was very bitter and I had to stop giving Aarya milk, sugar and such stuff for the medicine to have full effect.

Aarya was a foodie. Not letting him have cake and other sweets at birthday parties used to be heart-wrenching. But I persisted. Getting him to become well was the only goal in my mind.

At the end of six months of giving this medicine we saw there was absolutely no improvement in his condition.

If the medicine had worked we would have somehow managed to rustle up the resources to continue them. But with no results at all, we decided to stop the medicines.

Rapid Deterioration

In the meantime, Aarya’s limbs began turning. He began having difficulty in swallowing. We knew the deterioration had started and it was going to be rapid. He began having a lot of congestion in the lungs. By the time he was 3 he was completely bed-ridden. We were feeding him through a stomach peg and every few hours we had to suction out the congestion in the lungs. An oximeter attached to his forefinger became our lifeline as well as his. Oxygen had to be constantly supplied to the lungs and this oximeter told us if the oxygen levels were normal.

I was the primary caregiver. Though my husband took over Aarya’s care for 3-4 hours in the night, he had to go to work and the entire onus of taking care during the day was on me.

The pain of helplessness was taking its toll. That one could do NOTHING at all was always gnawing at my heart. I often felt my head would burst. I needed some time out and looked forward to visits from friends and family. My mother often chipped in to help with my daughter, which was a huge blessing.

But some visitors would say this was happening because of Karma: apparently because of a wrong Aarya or we might have done in previous lifetimes. And here was this child, a pure soul, lying helpless.

Seeking Solace

It got too much to bear. I stopped allowing such toxicity to come into our life.

Meditation came to my rescue. This gave me the strength to carry on and not go into depression. Even today I ask the question “Why”. When I think of God I can still see Aarya, my little baby and the injustice of it all still hurts me. Hopefully meditation will help me to come to terms with it.

Towards the end, when Aarya was just three months away from his 7th birthday, the oximeter readings began getting lower and lower. This was a sign that he was struggling but we could do nothing at all to help him. With monetary and other resources available to us, even then we were helpless. We admitted him to the ICU but we decided to be with him instead of leaving him alone inside the ICU. We shifted him to the room and we were with our Aarya when he passed on an hour later.

For me it was as if I was thrown into a void. For almost two weeks I could not come to grips with the loss. My husband and my daughter had been equal partners in facing this journey of pain together. The bond between my husband and me had strengthened through this adversity. My daughter had matured almost overnight over the five and half years of Aarya’s condition. But they needed me and I had to overcome my grief.

WithAarya – The NGO

Aarya had come to be known as the NPC child. All doctors began referring their NPC patients to us. When Aarya was four we began an NGO ‘WithAarya’ to help the ‘NPC families’. Most were from low income groups and often multiple kids in the family were afflicted. This caused a huge strain on their finances and they could not provide proper care. As the disease progresses, the amount of care required becomes very intense. We helped, as much as we could, with information and support. Going back after Aarya was almost traumatic and my husband told me to stop going to the hospital. But I knew I had to go back and help them. This is what helped me come out of the pain of losing Aarya.

I would visit the KEM hospital very often since it the only hospital in India where all genetic disorders are treated. Many of the patients and their attendants were from out of town. I would often see them sitting outside in the corridors or on the road, hungry, not able to afford even a single meal in the day. There was a tribal child who had been admitted for a heart illness. But he was so malnourished that it was unbearable to see his condition.

With my husband’s encouragement, I started distributing food packets at lunchtime to those in need. This is how Don Ghaas (Marathi word for Meal) came into being. Each packet contains roti-sabji, dal-khichdi and a banana for Rs.10/- each. We began with 50 packets and today we are distributing 250 packets, 100 at lunch and 150 at dinner.

Besides this, we also help with medical aid in terms of medicines and getting prescribed tests done, including CT Scan, MRI and so on.

In truth, it is doing this work that has stopped me from going into depression after losing Aarya. Many people have come forward to help us with this initiative and we hope we can continue to make a difference as much as possible. Through our association with Organisation For Rare Diseases India (ORDI) we are also trying to get the Government involved in a larger way.

A Message of Service and Hope

Aarya will never come back. But his short journey with us has so much more sensitive to what is going on around us. People feel that they will get depressed if they help those in hospitals. Even for me, going back to these hospitals after Aarya was initially traumatic and my husband requested me to stop. But I knew I had to go back and help others. And helping others is what helped me come out of the pain of losing Aarya.

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