From Being Lost to Alive Together

Five of us joined today, and we started by sharing about our week and how we were feeling. I shared how I have been preoccupied with the feeling of disability. I watched a documentary about the life of a person with disability, and it brought up questions for me: why me? Why did this mental disability happen to me? There was grief around it, and sadness about living with it from day to day. I could feel the sadness. I could also feel the invisibility that I live with, and how it is not always understood by the family members around me. One member tried to find a silver lining, sharing that we can use our lived experiences and contribute something to the world. But I realised that sometimes I do not want to move so quickly towards a solution or a positive meaning. Sometimes, in the support group, I would like to just be with our feelings and sit with them, instead of turning away from them or finding a solution so quickly. I was feeling sad, and I wanted to stay with that sadness.

Another member shared that he too feels very lonely and detached sometimes. He feels overwhelmed with so much pain all the time, with so many voices and visions, and he does not know how to handle or be with all of it. He distracts himself a lot and tries to find calmness all the time. When it becomes too overwhelming, he switches off, detaches and withdraws, and becomes less connected. He would turn himself off. Otherwise, he would find ways to remain calm and collected and not think or feel about his past experiences and memories that continue to haunt him. He feels that he has no space to be with such a storm. He may say that after the storm passes, there is calmness, but he does not know how to be with his emotions or allow himself to freely associate and feel. This is what he really likes about this group: that he can liberate himself and freely express his thoughts and feelings, something he feels he gets nowhere else.

Another member shared that she had been feeling really painful a few days ago and was feeling better now for the last few days. She has been going through many challenges and sometimes the painful feelings return. She also shared her loneliness and how difficult it is for her to express what she is going through. She struggles with putting her experience into words and often carries it within herself. It is difficult for her to communicate what is really happening inside.

Another member shared that last week was really heavy for her. She went to the office and hallucinated while she was alone. Her colleagues saw her talking to herself and began making fun of her by mimicking her. This disturbed her deeply. She felt scared and went to the washroom and cried. She came back with a headache and continued struggling with what had happened. Afterwards, she did not return to the office and started working from home. We appreciated that she had at least gone to the office and taken that step outside her comfort zone. She shared that there is nobody at her workplace with whom she can talk about these feelings and experiences. She also shared that her workplace has a declaration around mental illness, and she fears that if they know about her condition, she could be asked to leave and get into trouble. She had been taking medication but has stopped it because she feels it makes her like a vegetable and that she also experiences hair loss. She then asked another member about the sound healing session he had spoken about previously.

He shared that the sound healing had helped him calm down. He can also listen to music himself and use it to settle his mind. He would still experience voices, thoughts and hallucinations, but music can sometimes make him stop thinking and feeling for a short while, allowing him to relax. He can now do this at home as well, watching videos with instrumental or calming music and enjoying them. He also shared that he sometimes uses headphones or his mobile phone and talks to himself or responds to his voices so that other people do not realise what is happening. There is something interesting about this, because sometimes these strategies help him remain functional and connected to the outside world, while at the same time they also hide what is happening internally.

I shared that music can really be helpful. I sometimes try Ayurvedic practices, and when I have a headache, I have tried shirodhara, where warm oil is gently poured on the forehead. They would sometimes play music in the background, but I would ask them to stop the music because I just wanted to feel the warmth of the oil on my forehead. That sensation itself would relax me. Another member shared that he had also tried acupuncture and found it very helpful. There was something nice about this part of the conversation, because we were sharing small things that help us regulate ourselves and feel more settled in our bodies.

Then one member asked a question about another member having stopped medication. She wondered whether she had tried speaking with a psychiatrist, checking why she stopped it, or exploring other alternatives. The member said that she did not want to walk that path at the moment and wanted to take things at her own pace. I found myself thinking about how medication has two sides. On one side, it can allow for some stability and functionality. At the same time, it can also feel like it numbs us, makes us feel disconnected from ourselves, or even makes us feel almost catatonic, without access to our emotions. There is a complexity here that cannot easily be reduced to whether medication is good or bad. It can help us survive and function, while sometimes also creating its own experience of loss.

This brought me to the here and now. One of the things I said was that we all have so much loneliness. We feel so much sadness together, and that sadness is actually present between us. I realised that perhaps we can become more present and here and now, rather than always speaking from memory. We can feel the moment and the togetherness, and then speak from there. We can share with each other not only what happened to us, but what we are feeling right now, in this very moment, while we are sitting together.

One member asked me whether I also feel detached sometimes. I shared that sometimes, yes, I do. But I can also feel the loneliness of decades very acutely, and that loneliness does not simply disappear. I feel less detached than I used to. I am more able to face life and remain present to the world, and I do not dissociate, withdraw or detach as much as I once did. But I still feel it sometimes. Perhaps being more present does not mean that the loneliness disappears. It means that I can remain with it without having to completely leave myself. It seems that another member detaches a lot, and he is relieved to have a space where he can freely speak. Perhaps the possibility of speaking freely is itself a way of coming back into relationship.

I shared that in the short term, it can be helpful to find ways of managing hallucinations when we are at work or in situations where we need to function. Going to the washroom, distracting ourselves for a while, using a phone, pretending to be talking to someone, listening to music—these things can all help us get through difficult moments. But in the long term, when we come home or have free time, perhaps we also need a space where we can actually be with our hallucinations and our inner experiences, where we can feel held and loved and allow ourselves to feel the terror, loneliness and rage underneath them. We need a space where we can feel safe enough to experience these feelings instead of constantly running away from them. I suggested that this space could be found in therapy, but it can also sometimes be brought into the support group, not only as a memory of what happened in the past, but in a more immediate way—bringing the experience as it is being lived, bringing the crisis itself into the room, and allowing others to be there with us.

Another member shared that she was experiencing menstrual pain and was feeling physically unwell. She was not initially comfortable speaking about it in the group, but eventually shared that she was feeling better and recovering. When we asked more about how she was doing, she said that her appetite had gone down and she was not eating much. We asked about her favourite food, and she mentioned broccoli and mushroom. We joked about how healthy that was and asked whether she ever craved junk food. She said she orders food regularly. I shared that my expenses had become too much, so I had stopped ordering as much and, when I craved pizza, I would buy the ingredients and make it at home with healthier ingredients. Another member shared that she also prepares food at home but does not like cooking very much, so she makes things that can be prepared quickly, within ten minutes. She suggested sabudana khichdi, and I suggested sabudana tikki. It was a very ordinary conversation, but perhaps there was something meaningful in it too. We were talking about food, bodies, cravings and everyday life. We were not only talking about schizophrenia.

And then we stopped there for today. In the reflection at the end, one member shared that she had felt lost at the beginning of the session, wondering what was going on, and now she felt more alive. Another member expressed gratitude to everyone and to me for initiating this space and bringing us together. Another person said she was thankful to everyone because she was feeling better, and another member also expressed gratitude to the group. I shared that I had been feeling sadness when we started the session, and I still felt sad. But I was comfortable with it. The sadness was not bothering me, and I was not fighting it or trying to get rid of it. I could simply feel it and remain here. And perhaps this is what I am slowly learning through this community: that I can be sad and still feel alive, I can feel lonely and still belong, and I do not always have to escape my feelings in order to continue living. Perhaps from being lost, we are slowly learning how to become alive together.

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