"Dementia, a condition that frightens many enough to shove it under the carpet and when it affects a loved one...even more...." are the opening lines that I wrote for my film titled "Selfless Soldier - Sailesh Mishra" (https://www.youtube.com/watch?v=aETnPu2FFXk). For a long time, I had been enamoured with the thought of making a film on Sailesh Mishra's passion but it just did not seem to materialise.
Then one fine day, YESiAmTheChange happened. I decided that this year, come what may, I was going to participate in the Yes Foundation's YIAC 101-Hour Social Filmmaking Challenge, 3-minute short films on social causes. I entered myself for the NGO category and hoped that the topic would be just what I wanted it to be. I had the thoughts, the director's vision (ahem!) and the storyboard ideas ready in my mind to tweak based on the topic, but I knew I would need someone to capture my vision and put it on screen. I decide to take the plunge by writing a small note on all my whatsapp groups asking for production assistance at minimal cost. I get a call from Drishti, who listens patiently to me saying, "I have this awesome friend Sailesh and I want to make a film on the work he does as part of a contest. I want to showcase his dedication for Dementia and Alzheimer's", to a response, "Hiraji, I think you did not recognise me. I am Drishti, Sailesh's daughter"... and I wished the earth had opened up and swallow me. That indeed was an unbelievable intervention by God himself for me and the beginning of a wonderful relationship with Drishti, her friend Amritraj Esakkiappan and their newly founded company called "The Photomist" (https://www.facebook.com/photomist/) that started the morning, the topic dropped into my mail box wee hours on 9th September. The topics were "Responsible Citizenship" or "Specially Abled"... and I chose "Responsible Citizenship" and we were ready to get going.
My long standing friendship with Sailesh had already created an awareness and interest into doing my bit for the cause for long now, so when I went to A1 Snehanjali at Nalasopara and Rajodi to record scenes I had in mind for my film, I sort of knew what to look for and what to expect. I knew that Alzheimer's is the most common form of dementia and what are the problems that come with it, but then I met Mary Aunty who kept holding my hand to ask "what will they do to me" and my heart cried. Everyone knows that the person affected by the disease retreats into a world of his own and the world she/he creates that has no place for reality or the present. Most of the times, the memories that remain are those that are long past gone but seem like today. Mary Aunty obviously had been hurt enough sometime, somewhere in her life and that bit of memory has remained with her, which is never going away. At first she refused to touch the casio, but then suddenly got up and played the 'happy birthday' song for us on the casio. Sadly, it caught us by surprise and we could not capture that moment on film. On the other hand, there was ever smiling Kusum Aaji (as she is fondly called) who remembered only the happy days at her home and kept inviting me home. My most favourite Hussaini Uncle, held on to a doll and kept telling me "he is a good boy most times" as I sat there talking to him.....and not to forget Bhaskar Uncle, Peter Uncle, Hariprasad Uncle, Meera Aunty and others there who stole my heart.
The environment there was calming, beautiful and green and the peace that came over me being there is unexplainable. It was no wonder therefore that the elders there are happy living in their own little world amongst nature in the loving care of the caregivers. As the day progressed and the more time I spent there, I realised that just reading up about the disease was so academic and clinical. Watching them trying to communicate with us made me realise human contact, a hug, holding the hand is so necessary that since that day at A1 Snehanjali, I have been hugging my daughter more each day.
Not to forget first and foremost, the fear of Dementia which scares us and I admit that I am one of those who is frightened too. Everyone according to me should visit once and I promise that you will come home with a lot more patience and understanding for elders. I can't explain what went through my mind, as I watched the elders and the caregivers at the assisted living elder care home that day. There was not much that I could do but to hold their hands and talk to them hoping that they were understanding me. That being key, it made me wonder how a family remains sane dealing with this unfamiliar, dark and unknown world of their loved ones, especially the children in the family. When it is not easy for the adults, I cannot even imagine what the children must be going through.
At the end of it all, when the film was edited (a big thanks to Drishti and Amritraj) and uploaded, I knew that I had fulfilled a promise made to myself long ago. Whether I win or lose the contest, it just does not matter anymore. I just revel in the thought that there will be a panel of eminent people on the jury and others at the YES Foundation, who will see my film. Maybe, just maybe the film will touch a heart and there will be someone out there who will reach out to Sailesh, as there is so much that needs to be done, so much more to be brought to the forefront and addressed. My friend and lone unsung soldier, Sailesh who is doing just that, on his own steam, needs to be recognised and supported. He truly understands the challenges and emotional needs of these elders and their families enough to continue to pursue his passion and dream of an elder friendly world. I, on my part, will continue to support him in my own little way and that goes without saying. His mantra "the silver-haired are not retired but rewired today and deserve to enjoy their second childhood”, is actually my mantra of life today.
