Sobati Seva Foundation: A true companion

✪ A journey from diseases to wellness
✪ Awkward problems and hand-holding
✪ "I wish to die!"
✪ Difficulties faced by caregivers
✪ De-addiction from mobiles
✪ Right to enjoy and associated guilt
✪ Art of stopping at the right moment

Hello. Yesterday on 5th December, I could witness a different beginning. My aunt Smt. Varsha Welankar and my uncle Shri. Chandrashekhar Welankar has started a new organization! Actually, my uncle is recently retired from his professional life. But he and the aunt are starting this new innings. This programme was about an informal public opening of their organization- “Sobati Seva foundation.” A small function taking place in presence of family members, dear ones and seniors.

My uncle and aunt are rather unique. They became partners with a view to lead a unique objective and to lead life the way one likes. They are basically journalists. My aunt had come from a humble background with plenty of struggles with the system and she is a journalist with rebellious approach. She works in plenty of areas right from art, drawing, Mandala art to craft made out of newspapers. She is right there into translation and recently health sector also. The uncle is equally unique. He has a smiling face and knows a knack to extract humour out of any serious situation! His English is particularly worth listening and reading! And he is hugely well- read too.

Since 2013, the Aunt’s health problems started with the kidney issues. The word- even uttering it creates a panic in mind- “dialysis” was started and later on many complications happened. She actually had “returned from almost touching the other world!” Later on the kidney transplant was done, but her problems did not end there. Despite of this all troubles, she persuaded her art and her translation work with zest when time and health allowed her. She has translated plenty of books. Some books are horrible. That “Auschwitz’s photographer!” Such horrible book that we suffer badly while just reading it. It is a great dose of depression. But she took it as a challenge and translated it. She had the urge to share all that stuff with the people. And she also has a deep urge to share her experiences. She regularly writes her experiences about her illness, her suffering and her journey. She depicts it as if she is witnessing it from a distance.

Their journey led to starting of the initiative “kidney support group.” My uncle and aunt received wonderful support from many warm hearted people- her elder sister Vijaylaxmi Didi, their friends and office colleagues with a great heart. Their friends too later on got involved in the initiative. My father (Dr. Girish Welankar) suggested them to work with Jankalyan Samiti’s Seva Bhavan project. This led to starting of a special initiative for the dialysis requiring patients in Seva Bhavan. Later on counseling, guidance and Yoga- treatment was also started there.

Despite of constraints of weak health for the aunt and time constraints as a journalist for the uncle, they continued this work. They began with kidney patients, but later on started working with terminally ill patients and cancer patients. Their journey helped them to be able to guide other patients. Now my uncle, relieved from his professional duties and my aunt will go further on this path. Their organization is going to work not only for kidney patients, but all terminally ill patients and it will also work with the caregivers. Caregivers also have issues and problems and need help. Their work also will have components related to fitness, yoga and meditation.
The name of the organization- Sobati (companion) is meaningful. They are mere companions. When we say the word guide or helper, then it means a bit of hierarchy. That’s why they chose the word Sobati (companion.” The motto of the organization is to accompany the patients, the caregivers and let help emerge through this togetherness. Apart from disease- health and meditation- yoga related aspects, the work will also include parent- child relationships, mobile de- addiction (Yes!), mobilizing resources for financial help and finding out support systems. It will also have palliative care for last stage patients and will have emphasis on healthy lifestyle. All this vision is wonderfully expressed in these acronyms-

Sobati Seva Foundation- each one, reach one
SOBATI- Service Oriented Backup to Assist the Terminally Ill
Swayam- Self Wellness Attainment through Yoga And Meditation
PAT (Parents and Teachers) for kids- accompanying 10 year old kids' parents and teachers
CFK- Caring for Kideny
MPMB= मेरा फोन- मेरा बच्चा = My Phone, My Baby! This companionship will help for awareness about ill- effects of phones and tips about how and how long to use the phone.

Informal sharing by both of them and thoughts expressed by seniors like Vinaykji revealed the outline of this work. One needs to have a lion’s heart to take path when one is undergoing excessive pains and health issues. Along with that, one also needs to have equally brave and committed “companions.” Friends and family members of them have provided this company. Both of them are very lucky in this respect. They have a friend whom they call “Pune mother” and others. They also have blessings of seniors and other torch bearers of this path. People from Jankalyan Samiti, personnel from Deenanath Hospital and many others are involved in this.

Some points in the discussion are worth mentioning. The uncle shared case of one patient. His age is 75. He is undergoing dialysis. His wife has died and his daughter is abroad. He is rich. But now he has to live a life of a dependent. He does not have a person who would accompany him for his health requirements. He cannot even find a person who would give him protein with milk. Such a wealthy man, but now so helpless. He cannot bear this helplessness and tells the uncle, “I want to die now. Tell me, how can I die.” My uncle responds like this to him, “Yes, I understand what and why you say so. But I can only pray that you die, I cannot do anything else.” But this shows how subtle this topic of euthanasia is.

In our society, generally being happy and joyful is regarded as sin! Then if someone is a caretaker of a seriously ill patient, then? What the society would react if ever she becomes happy, takes joy of small pleasures, does what she likes? Pressures of the society are so intrinsic that even that person carries a guilt about this. Caregivers too have such delicate and difficult problems. They also need hand-holding and dialogue. In cases where families cannot hire professional caregivers, they need training to manage it themselves. Also helpers are not meant to do this as a task, this needs affection and bonding. Vinayakji shared example of a small girl climbing a hill. She was out of her breath while climbing, but still she climbed with her younger brother. Because, it was not her “liability”, but her brother!

During the discussion, I came to know that these days even young persons of age 20- 25 are also undergoing dialysis. Many youngsters are having diabetes and other diseases. Later on in future, we all would be compelled to make a deadly choice- Whom to provide the treatment? 70+ age elders or younger people with responsibilities? Such is scarcity of resources. This just makes us realize how significant is our health and fitness. How crucial is to preserve our body. There are options of treatment for the diseased persons. But they are very troublesome- creating many stress. Instead of this, if we just maintain our fitness and adapt a healthy lifestyle, then this all can be easily avoided. Awareness is badly needed in this direction. This dialogues is necessary.

Everyone is running towards his or her goals. It is right also. But along with seeking personal goals, one should also consider social goals. One should expand one’s being. During the discussion, one person recalled an incident in the famous show “Kaun Banega Crorepati.” One doctor had come there, he played well and won 3 lac 20 thousand rupees. Then he stopped Amitabh Bachchan. He said, my expected money is this. I had wished for this and I got it. My need is fulfilled. Now I will not play further. I will not block the path of other persons who are waiting. Now please give opportunity to them! Such rare is the art of stopping, art of finding the right moment!

Thus, the family function gave so much energy. For more information about “Sobati Seva Foundation”- Shri. Chandrashekhar Welankar- 9404727345. Written by- Niranjan Welankar 09422108376.