Koi baat nahi

— Praggapti Ghosh

 

The 21st-century world seems to find a solution for every problem, every situation, every event which puts you down, “koi baat nahi” or to say “it’s okay” the statements which seem to be used often no matter what the situation is.

This universal statement can be applied everywhere.  You share with your friend that you are having a very bad day, and just when you are about to share more, there comes a “koi baat nahi” slapping you right at your face, telling you to shut up, informing you that it does not matter, your emotions should be controlled by you yourself. You hear your colleague is sharing about a fight at her home, and you say “koi baat nahi” at the very precise moment she is about to lose it. This can go on and on in any situation you can think of.

The work of “koi baat nahi” here is to nullify the emotions as if the emotions do not exist. However, in reality, we can’t ignore the fact, all the emotions the positive ones like happiness and wonder and the negative ones like anger and disgust are normal and universal. There is nothing wrong with having them. There is nothing wrong in wanting to share them either. Sometimes all it needs to let go is one good ear to listen.

So, next time someone shares something with you, consciously remember that “baat hai” which means that “it matters” and try to replace the phrase with “I am listening to you” and “I am here for you”

And if it appears to you that you can’t be available fully to listen to someone accept it and let the person know there is nothing wrong in accepting your own emotions too, in the long run, it is much better than nullifying the emotions.

EMPOWERING “CARER-SAATHIS”

— Mridula Seth

Ever since I started volunteering with a nongovernmental organization working with persons suffering from mental illnesses, my understanding of the sufferings and challenges faced by the carers has increased manifold. I feel surprised, a bit guilty also, that even though I was living in a joint family, I was not fully empathetic with my sister-in-law whose son was as old as my daughter and who was struggling with him to cope with his education and social behaviour. As an educationist, I did realize that he needed special attention and the boy should go for special education, but because of our relationship, she was not ready to accept my suggestions. Years later, she told me that she had been struggling with him taking him for counselling without telling anyone in the family!

Our relationship improved when we started living in nuclear families and she became open to receiving help as her son was growing up and the gap between him and my daughter was becoming obvious! I used to feel terrible hearing my sister-in-law scream at him and sometimes bang his head against the wall while teaching him. I felt helpless and miserable but then got used to it over a period. Tarun (name changed)  could not complete his schooling and often compared himself with my daughter with whom he had a close relationship. His mother did not want to have another child knowing that Tarun had inherited some traits from his father, my husband’s elder brother.

While Tarun’s social behaviour as a child was overlooked by the extended family, as an adult it was not acceptable. So much so that the family started avoiding his parents in social functions, isolating them.  This did not affect Tarun’s father as much as his mother who was very sensitive and critical of the attitude of the family members. However, she did not complain to them and continued to expand her social circle where she became an opinion leader and much sought after in religious group gatherings. She even initiated activities with some women going to the old home, helping children get admission in schools and becoming a popular figure in her locality. Moving away from the joint family helped her establish her own identity where her friends accepted Tarun and his behaviour.

Knowing that he suffered from mental illness, my husband’s friend employed Tarun in his factory. However, he was unable to work with colleagues taking advantage of the friendship between his uncle and his boss. His memory, especially of names, places and love for travel, were assets but somehow, he has not been able to know his boundaries and that becomes a cause of irritation for most of the people! He is an extrovert and does not hesitate to call and meet strangers. His addiction to using mobile has many people block his number as he repeatedly disturbs them. He loves to provoke individuals and is intelligent enough to know what to say that can cause a reaction. He can become verbally abusive and break relationships, but his childlike nature makes him forget all grievances and become friends again!

Tarun’s obsession for using or misusing Facebook and digital technology landed him into trouble when he posted comments about his neighbour’s daughter and the neighbour threatened to complain to the police. That is when the need for sending him to Daycare centre was realized. His experience with the first one was not good but ever since he joined Sambandh Health Foundation in Gurugram, there is marked a difference in his behaviour and self-confidence. He learnt to make wax candles and diyas from the Blind school and has been improving his quality of products in the past two years. His aggressive behaviour in promoting his products often puts off customers who do not understand his mental condition. Over the last three years, I have earned his confidence and respect. He is unable to handle money. He hands over sale money to me and I give him a cheque to deposit in his bank. I was touched when after Diwali sales, he touched my feet in gratitude!!

In the past three years, I have realized the importance of being a “Saathi” (friend) to my sister-in-law especially after she lost her husband.  Her fear of what happens after she is gone has been her major concern for a few years leading to forming a Trust where my daughter and I are trustees. She keeps preparing him for being independent and living with some relative as paying guest or in a home which she is desperately looking for!!

The need for support to carers is being increasingly felt by those who are sensitive to the challenges faced by carers in looking after the physical and emotional needs of their loved ones. This recognition was voiced during the training programme organized recently through the C4MH (Communication for Mental Health) campaign for field level functionaries of nongovernmental organizations. Purpose of the training was to build the capacity of grassroots workers to conduct campaigns for increasing awareness on mental health and breaking silence for open discussions on mental health issues that are hush-hushed or bottled inside!

I have witnessed how Tarun builds imaginary stories and tells them so convincingly that his mother believes him and forms her opinions against others. Sometimes she reacts aggressively blaming others for their behaviour and lack of sensitivity towards her son. In the rehab Daycare centre, he gets into arguments with the counsellors and is sometimes verbally abusive showing temper tantrums threatening to cut-off relationships and discontinue association with the NGO. He takes pride in reporting against the counsellors to the management and his mother. As a silent observer and mediator between my nephew, his mother and the NGO, I have gained valuable insights that have made me understand the need and role of a “Carer-Saathi“(CS) or friend and supporter of the carers.

  • In the process of empathizing with the person being cared, the carer tends to become vulnerable to mix facts with imaginary situations depicted by the person. This can lead to carer forming a negative attitude towards others interacting with the person. Carer-Saathi being relatively detached, can mediate effectively for removing misunderstandings.
  • Carers need skill-sets to cope with their own emotional problems which are increased manifold because of their carer roles. Carer-Saathis, if trained volunteers, can be assets to them.
  • Carers need space especially if they are looking after demanding family members. Sending them to Daycare facility provides space. However, if this option is not possible, home visits by CSs would be an ideal situation giving respite to the carers.
  • Training programmes can be designed especially for carers and carer-saathis keeping in mind the needs and challenges faced by them. While some components can be generic, sessions for special needs of persons suffering from mental illnesses can also be built into the programme.
  • Sharing experiences by carers and Saathis can be therapeutic and empowering improving the quality of life of the carers and their loved ones.

Participating in carer meetings on behalf of Tarun’s mother has made me explore the scope of identifying volunteers who can be potential friends or saathis of carers and empowering them with training and support.

 

संघर्ष, विश्वास, और नई आशा

WhatsApp Image 2020-05-21 at 5.55.05 PM

जब मैं पहली बार मानसिक रूप से बीमार हुवा था, तब मुझे हर व्यक्ति और हर वस्तु से डर लगने लगा था।  रात को कुत्तो के भोंकने व हमारे घर में होने वाली किसी भी आवाज़ से या उनकी आहट से मैं डर जाता था।  मुझे 24 घंटे कई लोगो की आवाज़ एक साथ सुनाई देती थी।  इससे मुझे बहुत परेशानी होती थी व कई दिक्कतों का सामना करना पड़ता था.

ऐसा मैंने पहले महसूस नहीं किया था, मेरे और मेरे परिवार के लिए नया अनुभव था।

कुछ लोग कहने लगे कि मेरे ऊपर भूत आ गया, यह पागल हो गया, इसे घर से निकाल दो, यह अब किसी काम का नहीं हैं। कई बार मेरे घर वाले भी कहते थे कि गाव वाले सही कह रहे हैं तुम अब किसी लायक नहीं हो।

कई तरह की बातों में एक सलाह यह भी आई कि यह एक बीमारी है और इसका इलाज हो सकता है। मैं इलाज के लिए बंगाल की आसनसोल नाम की जगह पर गया I  वहां पर मुझे एक डॉक्टर को दिखाया गया, उसने मुझे दवाइयां दी, जिनसे मुझे आराम मिलना शुरू हुआ, और मुझे लगा कि मैं ठीक हो गया,  किंतु कुछ दिन दवाइयां खाने के बाद मैंने दवाइयां छोड़ दी और कुछ महीनो के बाद मैं फिर बीमार पड़ गया। उसके बाद मेरा इलाज़ बिहार में कराया गया।  जहां से मैंने एक वर्ष तक दवाइयां खायी। मुझे दोबारा से फिर ऐसा महसूस हुआ की अब मैं पूरी तरह से ठीक हो गया हूँ और अब मुझे कुछ नहीं होगा।  मैंने फिर से दवाइयां छोड़ दी, लेकिन मैं एक बार फिर मानिसक रूप से बीमार हो गया I मुझे तांत्रिक को भी दिखाया गया था, जिससे मुझे फायदा तो कुछ नहीं हुआ बल्कि मेरे पैसे बर्बाद हो गएI पैसो के अभाव के कारण मैं आगे अपना इलाज़ नहीं करा सका।

मानसिक और आर्थिक परेशानियों के चलते मेरे सपने भी कहीं धुंधले पड़ने लगे। मेरी पढाई पूरी तरह से प्रभावित हुई, मेरा स्कूल, कंप्यूटर क्लास, टूशन सब छूट गए।  मैं समाज से भी कटने लगा लोग मुझसे बात नहीं करते थे और दुर भागते थे, मुझसे डरते थे और मेरे पास नहीं आना चाहते थे।

उसी दैरान मैं गुडगाँव (हरियाणा) आ गया। यहां पर मैं सम्बन्ध हेल्थ फाउंडेशन के सम्पर्क में आया। उनकी सहायता से मेरा इलाज़ पोलीक्लीनिक, सेक्टर ३१, गुररग्राम में शुरू हुआ समबन्ध से मैंने  काउंसलिंग  भी ली। समबन्ध के संपर्क में आने से पहले मैंने अपने ठीक होने की उम्मीद ही छोड़ दी थी। सम्बन्ध से जुड़ने के बाद मेरे अंदर एक उम्मीद जगी और मैंने अपने मानसिक स्वास्थ्य की स्वयं ज़िम्मेदारी ली और अपना इलाज करवाया I

मुझे धीरे धीरे बेहतर लगने लगा और मैं ठीक होता चला गया। कुछ समय बाद मुझे एक डिपार्टमेंटल स्टोर  नौकरी भी मिली। और मुझे बताते हुए बहुत खुशी महसूस होती है कि में तकरीबन 2 साल से यही काम कर रहा हूं और बहुत संतुष्ट हूं। यह लोग बहुत अच्छे हैं। मुझे यहां किसी भी तरह की परेशानी नहीं  मेहसूस होती हैं। मुझे खाने-   पीने से लेकर वेतन, किसी में भी कोई दिक्कत नहीं होती हैं। अगर मुझसे कभी गलती हो जाती हैं तो सभी लोग मुझे समझाते हैं कि इस काम की ऐसे नहीं ऐसे करते हैं।

काम के साथ साथ मुझे प्रशिक्षण देते हैं, मेरी हौसला अफ़ज़ाई करते हैं और मुझे अच्छी अच्छी बाते बताते रहते हैं। जब से मैं यहां काम कर रह हूँ मैंने बहुत कुछ सीखा हैं। वे मुझे अधिकतर ऐसे ही काम देते हैं जो मैं बहुत अच्छे से कर लेता हूँ और जिसमे मुझे दिलचस्पी होती हैं। इस लॉकडाउन जैसी घड़ी में भी वो मुझे अपने घर से खाना लाकर देते हैं तथा अपना ख्याल रखने के लिए कहते हैं। और किसी भी समय आगे कुछ दिक्कत हो तो तुरंत फ़ोन करने के लिए कहते हैं। वेतन के अलावा मुझे प्रोत्साहन रकम भी देते हैं।

इस माध्यम की मदद से और वर्ल्ड स्किजोफ्रेनिया डे के अवसर पर में आप सभी तक अपनी यह कहानी पहुंचाना चाहता हूं, और यह संदेश देना चाहता हूं कि हम जैसे मानसिक रोगियों को रोगी न समझे बल्कि हमारी तकलीफो को समझने की कोशिश करे कि हम क्या महसूस करते हैं किन परेशानियों से गुजरते  हैं, हमे भी सामन्य नज़रिये से देखे, और हमारे साथ सामान्य लोगों की तरह ही व्यवहार करे।

हमे समाज का हिस्सा समझे व समाज से अलग न करे। हमे पागल कहकर हमसे डरे नहीं। और अगर कोई मानसिक रोगी आपको मिले तो उसकी परेशानी को समझने की कोशिश करे, वो किसी को नुक्सान नहीं पहुंचाएंगे बल्कि वो तो खुद डरे हुवे रहते हैं।

इलाज़ कराने और कार्य में व्यस्त रहने से मानसिक रोगियों की रिकवरी संभव हैं।  ख़ाली बैठने से इस बीमारी से छुटकारा नहीं मिल सकता बल्कि दवाइयों के साथ साथ रोज़मर्रा की गतिविधियों में प्रतिभाग करना भी अति-आवश्यक होता हैं।  दवाइयों से भी उतना बदलाव नहीं आता जितना कि दवाइयों के साथ साथ अपनी पसंद के कार्य करने से मिलता हैं। पसंद के कार्य करने से पीड़ित व्यक्ति आलसी महसूस नहीं करता हैं। और अंत में  मैं फिर यही कहूंगा कि पीड़ित के साथ हमेशा प्यार से पेश आये।  हम भी आपकी तरह इंसान हैं।

हौसलो का सफर

जब शुरुवात में इसे चिल्लाने और सामानों को तोड़ने के दौरे पड़े तो हमें समझ में नही आया कि हम क्या करे? ना तो यह सोने देता था और ना जागने, घर के सभी सामान तोड़ डाले थे, कुछ भी घर में सही सलामत नही बचा था।  जिस चीज़ को भी देख लेता उस पर अपना गुस्सा निकाल देता था।  आसपास के लोगो के बीच में चर्चा का विषय बन गया था। बच्चे इससे डरने लगे थे व पास-पड़ोस के लोग आकर बोलते थे कि आपका बेटे की हालत अब आपके बस से बाहर हो गयी हैं। अब ये कभी भी ठीक नही होगा।

जब हमने लोगो से मदद मागी तो किसी ने भी हमारी मदद नही की। इसकी बीमारी के कारण, हमारे मकान मालिक ने हमें मकान खाली करने को बोल दिया। हमें समझ नही आ रहा था कि हम क्या करे? कुछ लोग बोल रहे थे इस पर किसी का साया (आत्मा) आ गया है, तो कुछ लोग बोल रहे थे कि इसे डॉक्टर को दिखाने की ज़रूरत है।  काफी भाग-दौड़  करने के बाद किसी ने हमें बताया की इसे सहादरा में अस्पताल में ले जाओ वही पर इसका इलाज हो सकता है, तो हम इसे सहादरा ले गये।

मेरे साथ मेरी छोटी बहन गयी थी उसने मेरा पूरा साथ दिया था।  शाहदरा में इसे 15 दिनों के लिए रखा गया परन्तु वहां से हमें कोई फायदा नही हुआ।  उसके बाद सोनू  की हालत ज्यादा बिगड़ने लगी तो हम उसे वापस घर लेकर आ गये।  फिर एक दिन सोनू के साथ काम करने वाले लोग उससे मिलने आये। उनमे से एक साथी ने कहा  इसे मैं ठीक करवाउंगा और सोनू को गुरुग्राम के सिविल अस्पताल लेकर गए जहां पे उसको भर्ती किया।  तभी हमने उसका  एक  मौलाना से  भी इलाज़ कराने के बारे में सोचा किन्तु  डॉक्टर ने हमसे कहा कि अगर तुम इसे मौलाना  के  पास   ले गए  तो हमारी कोई जिमेदारी नही होगी। लेकिन हम नहीं माने और उसे झाड़ फूक करवाने  के लिए ले गए।

फिर एक दिन सिविल अस्पताल में हमारी मुलाकात सम्बन्ध के स्टाफ से हुई (सम्बन्ध का स्टाफ प्रत्येक मंगलवार को सिविल अस्पताल का भ्रमण करता हैं ) जिन्होंने हमे बीमारी के बारे में सही से समझाया और डॉ ब्रम्दीप सिन्धु से अवगत कराया।  जैसे ही हमने उनकी दवा शुरू की,  उनकी दवा से सोनू को काफी आराम हुआ व  धीरे धीरे उसकी ताबियत में सुधार आने लगा। और जब उसे लागा की वो काफी  हद तक ठीक हो गया है तो उसने दोबारा काम पर जाने की इच्छा जाहिर की परन्तु हमने उसे दोबारा उस मील में काम करने की अनुमति नहीं दी क्योकि हमे लगता था कि ये वही से बीमार हुवा। हमने साफ़ तौर पर कह दिया कि अगर तुमारा मन है तो कही और नौकरी देख लो। और सोनू ने दूसरी कंपनी में अपनी नौकरी की बात कर ली  तब से आज तक वह प्रतिदिन काम पर जा रहा हैं।

परिवार के नाते हमने हमेशा सोनू की सहायता की हैं, और उसके हर दर्द में, तकलीफ में, परेशानी में उसके साथ खड़े रहे हैं। जब वो तकलीफ में था तो हमेशा  उसके साथ परिवार का कोई आदमी रहता था ताकि उसे कोई परेशानी न हो और आज वह अकेला कही भी जाता हैं । मैं सोनू से कहती थी कि हालात चाहे जो भी हो मगर मैं तेरा इलाज़ जरुर करवाउंगी। जब से डॉ ब्रम्दीप सिन्धु से सोनू  को राहत मिली है तब से मेरे पति ने दवा बंद करने के बारे में कई बार बोला मगर मैंने एक दिन के लिए भी दवाइयां छूटने नहीं दी। और मैं हमेशा डॉक्टर से राय लेती हूँ। मैं सम्बन्ध से हमेशा परिवार की भूमिका के बारे में पूछती रही और समझती रही की अब क्या करना हैं? उससे मुझे बहुत मदद मिली हैं।

मैंने सोनू से हमेशा कहती हूँ कि तुम हमारा सहारा हो और तुमारे बिना हम नही जी सकते। हमने इसके बुरे वक़्त में भी उसकी सभी इच्छाओ का ध्यान रखा।  उसने जो भी माँगा देने की कोशिश की और कभी भी उसे अकेला महसूस नही होने दिया। हमने कभी भी उम्मीद नहीं छोड़ी थी और हमे पूरा विश्वाश था कि ये ठीक हो जायेगा और आज परिणाम सके सामने हैं।

मैं सब लोगो से भी यही कहना चाहती हूँ  कि हालात जो भी हो मगर आपको मानसिक बीमार वयक्ति का साथ कभी नहीं छोड़ना चाहिए।  मेरे परिवार की तरह आप भी मुश्किल  वक़्त  से  बहार  निकल  सकते  हैं अगर आप  उम्मीद न  छोड़े।

जब सोनू को शुरू परेशानी हुई है तब हमे कुछ समझ नहीं आ रहा था। ये सब हम पहली बार देख रहे थे। हमने कई बीमारियों  के बारे में सुना था मगर ये बीमारी सबसे अलग थी। समाज के लोगो ने हमारी कोई  मदद नही की।  लोगो ने इसके बारे में अलग अलग बाते बनाना शुरू कर दिया था। हमारे सामने कहते ये ठीक हो जाएगा और पीठ पीछे कहते की सलमा का लड़का पागल हो गया, अब वो कभी ठीक नहीं होगा।  हमने लोगो से परेशान होकर अपना मकान भी बदल दिया था। जबसे हम यहा नए मकान में आये हैं  हमने किसी से ज्यादा रिश्ता नही रखा।

लेकिन जैसे सम्बन्ध के  कार्यकर्त्ता  सोनू के बारे में पूछते रहते हैं व  उसकी दवाई का और उसका ख्याल रखते हैं,  वैसे ही सोनू के साथ कंपनी में जो आदमी काम करता था उसने भी हमारी पूरी सहायता की हैं।  अब देखो जो लोग शुरू में कहते थे कि ये ठीक नही होगा वही अब कह रहे है कि देखो सोनू बिलकुल ठीक हो गया हैं। मुझे लगता है सोनू को दवा और दुवा दोनों काम कर गयी और फिर से सब कुछ पहले जैसा हो गया हैं।

Schizophrenia is no Barrier to leading a fuller Life

Mohit Seth is a very versatile person with a keen interest in the Delhi Metro and is up to date on all their activities. He has helped a lot of politicians in various capacities in canvassing during elections. He is now self-employed.

When Mohit Seth first walked into Sambandh, we were not quite sure about whether we were equipped to deal with his challenging behavior. He comes across as a very over-powering personality.

At the age of 46 he was diagnosed with schizophrenia.

In his words

“My recovery journey started when, one day my aunt and cousin sister took me to Sanjivni Society for Mental Health, back in 2014. It helped me to gain confidence but I still yearned for someone who could believe in me. One day my counselor at Sanjivini suggested that I go to Sambandh Health Foundation in Gurgaon.

I searched for them on Google and called the Sambandh office.  I became a member with them. I would travel from Faridabad to Gurgaon every day by Metro. I was assigned a case coordinator with whose support I identified my goals for the first time in my life. I found Sambandh the place where everyone listens to members (people like me). Sambandh believed in me and gave me space to do what I like to do and supported my accomplishments. One thing which I like most about them, is that during lunchtime everyone sits together to have lunch where members and staff have interesting and funny conversations. I enjoy that a lot.

Slowly, I started to participate in outdoor activities, community kitchen, and street play. In 2016, I developed soft skills and IT skills with the help of their staff team. I learned to use e-mail and social media. These skills boosted my confidence.”

Mohit is very resourceful. One day he said to us ‘the road in front of Sambandh desperately needs repair. I can have that done.’ We thought he was just boasting. Three days later the broken road was repaired and he revealed that he had achieved this with a series of social media messages to the relevant people in the municipal corporation.

He used to keep talking about bringing in donations but never did. One day we light-heartedly challenged him to ‘walk his talk’.  In the next month and a half he had raised a substantial amount in donations.

Sharing his recovery journey is what he has to say

“I started exploring employment options but could not succeed in my initial trails. One day Rita at Sambandh asked me about my interests. I told her that I want to do my own work. I joined a training programme on ‘Wax Candles &Diyas Fancy items’ at Blind Relief Association, Nizamuddin, New Delhi with the help of my aunt Mridula Seth.

After that training I started my own business. I made wax candle, diyas, and fancy items; with support and encouragement from my mother Veena Seth and others in my family, I would sell these items through orders and exhibitions at various places. I started to put up stalls in ‘Diwali Mela’ at Lady Irwin, Deshbandhu, Kamla Nehru, Gargi College, and Lady Shriram College.

Earlier this year, I had put up a stall by myself at the ‘Hunar Haat’ an initiative by the Ministry of Minority Affairs. After my experience there, I registered myself for ‘HunarHaat’ which takes place across the country in Gurgaon, Chandigarh, Amritsar, Jaipur, and Dehradun. It seems like a dream come true. I am earning independently. I cannot express my happiness in words but I want to express my gratitude to Sambandh and my family who believed in me and always support me. Thank you so much all!”!

He now drives his mother to the market for her weekly shopping and is constantly learning new life skills.

His aunt who takes a keen interest in the Family Self Help group at Sambandh, has through conversations with other families and attending the educational sessions there, has become a major source of empowerment for him.

By drawing appropriate boundaries and being able to see him as a person with aspirations like the rest of us, we helped him open up the doors for himself to realize his dreams. The effort was all his.

We wish you the very best Mohit Seth for your efforts which are tireless!

My idea about mental health?

— Aditya Rao

 

Mental health basically relates to the causes and effects of alternate types of thought processes and behaviors from mainstream society. Mental Health disorders are issues that affect the lives of many, some detected and some undetected.

In poorer and rural areas of the world, mental health disorders usually tend to go undetected as people don’t have the income to get it detected, are ignorant, or are afraid due to stereotypical thinking and stigma as well… And there are those who have the resources that don’t want to examine the fact that they may be having it due to stigma.

I personally am for treating mental health disorders as something that can be spoken about freely without stigma. After all, if someone has an illness like typhoid there is no stigma attached to it and it can be spoken about freely and accepted by mainstream society. Similarly, our mind/brain is also part of our body and any disorders related to it should be accepted and not shunned as something that makes a person an outcast from society.

The story about my success

–Aditya Rao

I from childhood had always been a shy and anxious person. I have struggled to make friends in the past and even now. Life has always and still is a puzzle for me that I’m trying to figure out. Who knows, maybe one day I’ll crack the code on how to manage life.

My major breakthrough in terms of mental health came in 2010 when I was put on a drug that didn’t suit me and I was flown to the US for treatment. Previously I had been wrongly diagnosed as a schizophrenic by doctors in India. In the US, they were able to detect anxiety and high functioning autism which seemed more accurate for me and still seems that way.

For a long time, I’ve had a spirit of never giving up in life. I feel that is the right spirit to have as it is only through facing dark times that you can appreciate the good times in life. Giving up means that you have not only given up on the hard times but on appreciating and savouring the good times as well. Things are still not very good for me with regards to my mental health, but I feel I should keep going.

Today I have my own business which I have started this year in April. Setting it up wasn’t easy and it caused my family and me lots of stress. Today it struggles to do well. But like always, I won’t give up till I’ve put in my best for it.

I hope you people realise through this story that to keep going no matter what. At the end of a dark tunnel, there is always an opening into the beauty of this world.

What After Me?

–Rita Seth,

Caregiver  and Founder Trustee, Sambandh Health Foundation

An unending cause for concern and debate in mental health circles of family caregivers!

Sambandh Health Foundation in Gurugram is a caregiver initiative to address mental health issues, started by families of people living with mental illness, coming together in 2011.

Let me share a recent experience. I was attending the funeral of a Sambandh client ( ‘Member’ of Sambandh).  It was an untimely death.

In the Sambandh family self-help group meetings, I had seen the pain and the desperation of the family and their inability to deal effectively with their loved one living with bipolar disorder. This is very common.

The family shifted from Delhi to Gurgaon, so that the daughter could visit Sambandh, the only hope they saw for her recovery. They built their house in a way that it could be used as a ‘group home’, a form of ‘Supported Community Living’ after the parents was no more. All arrangements were being made to make her future secure.

But as luck would have it, she could not visit Sambandh after shifting. She was diagnosed with a terminal illness. Her suffering was escalating. But even in that suffering, the family saw her acceptance of the fatality of the illness as if it came as a solace to her. She was more at peace with herself than ever before.

When I met the mother at the prayer meeting, for the first time I saw the relief on her face. She was calm and peaceful. She said to me ‘You have no idea how grateful I am to God for what has happened.’  Every time I touched my pillow at night the worry about ‘what after me?’ would overtake me from the time she developed a mental illness. Now I know that I have looked after my daughter to the best of my ability.  I have fulfilled my duty.  I know that she rests in peace and I am feeling so relieved, not having to worry about her future without me. Her suffering has ended and so has mine.

A family member has the courage to openly admit her relief at her loved one’s untimely death, which in any other situation would be an event of so much grief for the parents!

How do we resolve this issue?

Families struggle to,

  • find residential facilities
  • create a financial trust and find reliable trustees
  • ensure that medical insurance is in place
  • have psychiatric ambulances available in their state
  • advocate for home visits by mental health professionals become part of the health care system, for ensuring medication, food and other physical needs after the rest of the family is no more

All of these are essential, given the nature of the illness. But are these enough? Is that going to satisfy us?

Will all this be enough so that we can sleep each night in peace and not worry about our loved one?

Can we as families be satisfied in continuing to live in unhappy relationships with our loved ones while we are still alive? Are we happy to see them live marginalized lives and be on the fringes of society?

What is it that we are willing to do now to change the quality of our lives and those of our loved ones?

People get unnerved with the experience of mental illness. Families are unable to understand the changes. I saw it happen in my own home with a sibling. I saw my brother’s transition from being a brilliant, socially vibrant person to an angry, stressed out person, losing touch with reality, hearing sounds, coping with unpleasant visions and life slipping out of his hands.

Mental illness can bring along a gap in education, in doing a job or continuing to be a natural part of a family. It makes the person feel that he is left behind and will never be able to catch up. There are identity and self-worth issues to be addressed, readjustment of expectations, rebuilding skills and relationships!  I could feel my brother’s desperation. Not just him, the whole family was in pain.

In silence, we shared the pain and denial.  The feelings of guilt, of shame, and a lot of self-doubts suddenly surfaced from some dark corners of our unconscious minds and gripped us all. The families need awareness and understanding of mental illness, they need help. But it was not easily available.

Most human beings are intrinsically helpful, but not understanding an illness, confusing it with bad behavior or bad upbringing is responsible for the stigma around mental illness and social isolation. Building a supportive community by spreading awareness is a crucial part if we want perceptions to change.

The behavioral changes, the uncontrolled symptoms give rise to the idea of ‘madness’. People get fearful and want to stay away. The one good thing my parents did was to share the problems with people they trusted so there was no conscious alienation from people close to us. But my brother was isolated anyway, always trying to be in his room, not wanting to interact. It was years before we realized that he was not being difficult. He was living with an untreated illness.

The limited perception of people living with mental illness is the biggest barrier in the path of recovery. There are ample examples in society today, of people living their lives well, even with mental illness. Treatment is available. Today we know that people can and do live happy, successful and meaningful lives.

Sambandh health foundation’s Recovery Model, based on the latest research, addresses all these concerns, those of the person, the family and community at large, through its various programmes.

The Community Integration Centre (CIC), a Recovery Centre in Gurgaon, helps its clients living with mental illness (Members) to rebuild confidence, find a friend circle, strengthen their core to be able to move out into the community with hope, a positive sense of self, changing attitudes, a renewed outlook of life and resilience.

For this to happen, talking to each other, moving out into the community doing those things that are useful for independent living or sharing the household chores play an important role, while still being a part of the safe Sambandh Community at the Recovery Centre.  Learning to manage money, operate a bank account, learning new life skills, sharing leisure with friends on weekends, going back to jobs and education reintegrates the person into their own community.

People in need of support can decide where they would like to start and how they would like to participate. The relationship of trust and respect with the staff gives the members the courage to open up and share their deepest desires and find support in realizing them.

Members venture out to participate in conducting workshops on ‘Mental Well-Being’ and create awareness about ‘Mental Health Issues’ by sharing their own personal journeys of recovery. This also empowers them and helps remove the internal stigma.

Sambandh’s family self-help groups meet for emotional support, finding solutions,  getting professional inputs,  overcome the feeling that ‘we are alone’ and much more! Families also come in for individual counseling for their caregiving role.

Awareness, as part of Sambandh’s Community Mental Health Programme in Gurgaon city and 4 villages around it, helps people to come out of their shell, seek help if they need or refer their friends and relatives to us. And then the recovery work begins. Collaborating with the existing stakeholders in the communities is a great source of strength for us.

Sambandh ‘Group Home’, a form of supported living in the community, in a flat near CIC, with flexible supports and recovery planning,  provides opportunities for learning an independent living.

Along with the Haryana Government, we have started Project Recovery, to take the recovery work into each of Haryana’s 22 districts.

People need to experience recovery and self-reliance while the families are still alive so that the families can leave in peace when the time comes.

Sambandh with its the web of human relationships and the connection with all stakeholders provides comprehensive opportunities on an ongoing basis to people living with mental illness and their families to live a fuller life.

I have feelings and emotions – because I am alive

— Vickie Rai,

Family Counselor, Sambandh

Typically in the course of our day to day life, we experience two basic kinds of feelings – joyful and painful. We also tend to loosely classify them as good or bad, positive or negative. By labelling them as good and bad or positive and negative we tend to sit in judgement over ourselves and others when we experience these so-called negative feelings which essentially are only painful feelings. Since from our childhood, we are encouraged to be ‘good’ we begin to find our ‘bad’ feelings as a problem and go to lengths to manipulate, deny or suppress them.

Feelings which interfere with our sense of well-being like anger, fear, confusion, hurt, shame etc would be experienced as painful feelings. And for most of these feelings, we may all remember being told, at times even lovingly and caringly  – don’t be angry, don’t cry, don’t be sad etc. The sense that we get is as if there’s something wrong if we feel sad or angry and somehow it’s not ok to feel them leave alone trying to express them. And has anyone of us ever experienced our anger or sadness simply vanish just because we were told not to feel that way?

What is the purpose of painful feelings or for that matter any feeling? Are feelings even important? The answer is a resounding YES. Feelings are critical to our being alive. All feelings. The tragedy is that when we begin to suppress our painful feelings we actually end up reducing or numbing our capacity to feel joyful feelings too. Feelings are indicators of how we are doing in life. Joyful feelings give us a sense of moving in the right direction and of assuring us. Painful feelings, if allowed to be acknowledged, are also telling us that something important may be happening which needs our attention. That possibly some of our needs are not being met. An apt analogy would be a pain at a physical level. Any pain experienced in any part of the body is a signal to pay attention to something that may be wrong and needs to be attended to and corrected. In that sense pain is our friend. Pain is not the problem but a symptom. If we didn’t experience pain we would live in oblivion and not be able to take care of ourselves and correct things in time. Once we acknowledge and pay attention to that pain we can take care of it by providing what is missing.

At emotional level too, our feelings are always drawing our attention to what’s important and what’s missing by always communicating with us. But are we listening??