How my sister Gudi became the guiding light and most defining influence in my life

Born with special needs, Gudi defied all the odds, and became an emotional anchor for her whole family
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On March 24, 2021, we were sitting in a prayer meeting for my younger sister, Gudi, who had left us on her onward journey. She was 59 years old. Gudi was born with special needs, and she was truly ‘special’. 

I have a vague recollection of my mother going off to the hospital and returning with this cute bundle. I don’t think my parents realised that she was a child with special needs.

Soon after, we moved from Delhi to Hyderabad and then to the US. It was during our year-long stay there that they probably realised that she was mentally challenged.  But, we were in the right place to help early development. The elders in my family would say things, but my father stood up to them all and said ‘she is special and will bring good tidings’ – and she did so in abundance.

Gudi was born with special needs, but lived life on her own terms

I did not understand about her condition when we were children. What I did know was that she would at best develop to a mental age of 6-8 years and would have a likely lifespan of 35 years. She proved them wrong...she was ‘special’!

My parents single-mindedly attempted to integrate her into mainstream society, be it social gatherings or school etc. They also pushed us to accept her as she is, realising that after them, she would be our responsibility. She attended school in early years, because children her age were just learning how to speak and she would not stand out. As she grew older, I think dad and mom began feeling the impact of the difference and pulled her out.

She never went to a formal school after that. She was schooled in life.

I do know they explored residential schools for her but always came away disappointed  – the quality, upkeep etc. What really bothered them was that the schools insisted that she had to get a hysterectomy before admission. They were horrified that children like Gudi could be sexually exploited in the schools. 

Gudi is possibly the most defining person, within the family, in my life.

Our life at home was driven by what Gudi wanted, right or wrong, rational or irrational. And she realised it. A small deviation and she would scream and my parents would punish the rest of us. It was very upsetting. I would also get upset when we would go to pick up my mother from the school she was teaching at. The young kids would come running after the car and scream ‘Daboo seth’ has come – Daboo meaning the fat one. Kids can be heartless and it used to infuriate me. 

She was a natural when it came to  music and dance. She would lock herself away with music blaring and dance vigorously. There was rhythm and grace in her movements. She visually identified the records and had her own names for them. An album by KC and the Sunshine Band had a blazing sun on the cover, but she called it ‘moon moon’! Why not sun, sun? I never figured that out. 

Her nonverbal communication was unique and flawless because she would ensure we understood what she was saying with a mix of a few words and actions. Much like a foreigner in a new country who gets by with about 15-20 spoken words. Her emotions wafted through her expressions. My older brother would ask her, Who am I? pointing toward me, and she would say ‘chota bhai’. Pointing to himself – she would say ‘big boss!’. 

Her gentle head massages were out of this world and she knew how much we valued it! She knew how much we valued a little gentle kiss from her and these were her powerful negotiating tools. Her beatific smile became a balm in later years.  She had a mischievous side to her - There was this time when a friend came home. She asked him if he will have ‘mika’ (her word for Limca). She went into the kitchen and dissolved a whole lot of salt in water to give it a cloudy look and gave it to him. What followed was peals of laughter. Another friend recalls how she poured a glass of ice cold water on his head.

Gudi with her nephew Akshai Sarin

There was an intuitiveness in her. We had all gone to Bengaluru and visited the Satya Sai Baba ashram in Whitefield. We were in the darshan area when His Holiness came out and she prostrated with folded hands! Who had told her? Who had guided her? 

Very often she would talk to herself and I have been told that these children converse with an alternate world. Maybe someday science will validate this? I am told these children are old evolved souls (if you believe in karma) who are here to teach life lessons. And I marvel at the level of personal sacrifice they undertake for this. I sense some truth in this because she taught my father unconditional love and care. She taught me patience and sensitivity.

My chord with her became stronger and stronger as time passed, and I went off to St Xavier’s College Mumbai (JoJo college for her) and got mired in the joys of college life. Yet something in the back of mind was brewing. A dear friend went off to do her Masters specialising in mentally challenged kids and I recall writing to her that  someday we should set up a school for such kids. Little knowing that forty five years later life would bring me close to that space!

The churn to engage with the challenged kept increasing. It was coincidental, and if you believe there are no coincidences then it was providential, that I worked at Cadbury in their Mumbai Head Office, which was in close proximity to the SPJ Sadhna School for the challenged. It was also coincidental that I had a semi-serious injury and had to be away from work for about eight weeks.

That is when I first walked into Sadhna School and saw the transformative work happening there – kids learning computers, cooking some amazing hygienic food, handling money, able to speak and be understood. They were sending precooked meals every day to a few corporate offices! The children were being taught to look after themselves as much as they can, including financially. There was a separate vocational centre for graduating students. You could palpably feel the love energy flowing there.

In a conversation with the Principal, she mentioned that the school needed to become more visible on the net and attract donors. I volunteered to create a website for the school. Me, an illiterate in the tech area connected with two of my friends and we volunteered ourselves. The end product was ‘You give me wings.com’ which stayed for a long long time, and I was deeply touched when the school included me in their list of friends alongside the Dalai Lama. I was elated at the direction my life was taking.

Engaging with Sadhna, in the limited way I was, making a difference to the lives of children who needed support, was making me feel whole. These children teach us something many of us have obliterated from our lives – being transparent and loving. There is genuineness in their interactions guided by purity of emotion. And I realised that it is only our awkwardness that prevents normal interaction with them. 

Gudi had a genuineness in her interactions and was guided by purity of emotion

My mother passed away in 2001, suffering from accelerating cancer. Something told me that she was clinging on to life worried about Gudi. I recall whispering in her ear – ‘please do not worry about Gudi. We are there’. I guess she was waiting for that reassurance because that night she passed on with the most gorgeous smile on her face. Gudi sat through the prayer meeting at home, came with us for the cremation – completely stoic, but we wanted her to feel the completion

We were worried how Gudi would manage without mom but she just took charge of life – which included being an emotional anchor for Dad and also, in her own way, supervising house help! Mom was her emotional anchor, yet Gudi never mentioned mom again. These children live in the present moment and we were witnessing it.

But she did become a recluse – just not leaving her bedroom – eating and sleeping there.

Dad passed on in 2014. We were now parentless. Once more, our biggest concern was how will Gudi take this? She had lived with parents all her life, completely dependent on them. How would she take shutting down home and exiting Hyderabad?  It was amazing to see her resilience to move on, like it was the most normal thing to happen. Not once did she bring up dad or mom in her conversations, it was like the past did not exist.

She became her gregarious self again. She would happily step out for walks in the morning and evening. She would fly every three months between my brother, in Mumbai, and Bengaluru where we were. Expertly sat in the aircraft and enjoyed the inflight service. By the way, at the age of two she was already a member of the British Airways junior jet club!

Gudi had two rapid falls that resulted in surgeries in the leg. Unfortunately a process that should have taken 2-3 months to recover never happened with her. She did not have the mental capability to understand that she needs to push herself. She became wheel chair bound but that did not diminish her expression of love or her acceptance of things. Not once did she crib or show resistance. It did not diminish her angelic smile which reflected in her soulful eyes. Just observing her was a spiritual experience. Her love-filled eyes and smile were a rejuvenating balm. 

She shared pure love. She taught me sensitivity, the power of transparency, patience, the power of wordless communication, the ability to sense and be there for another. She was my living Buddha.

45 years from the time I first thought of setting up an institution for the challenged, Dr Radhike Khanna, ex Vice Principal of the Sadhna school, reached out to support her aspirational venture of setting up OmAbode, a residential school for the challenged, in the foothills of Karjat, outside Mumbai. 

I believe that Gudi had pre-programmed this all along!

Edited by Diya Koshy George

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