Day 96

Today I read an article which for the first time in many months filled me with optimism. It is about this centre in Detroit which has not had a single suicide among its patient population in the last 2 and a half years. I did not think that was possible but am delighted to know that it is. Here it is:

http://www.henryford.com/body.cfm?id=46335&action=detail&ref=1104

I also listened to a 19 year old boy speak with so much wisdom and courage. It was humbling and inspiring. His honesty struck me right in my face and broke my heart.

http://www.ted.com/talks/kevin_breel_confessions_of_a_depressed_comic?language=en#t-560396

My son’s school and University as well as my hospital have responded very positively to suggestions of finding ways to work with me to increase awareness of depression and suicide.

“We’re people, we’re people,
We struggle & we suffer & we bleed & we cry
And if you think that true strength means
Never showing any weakness then I am here to tell you,
You’re wrong. You’re wrong.
Because it’s the opposite.

We’re people, we’re people
And we have problems
And we’re not perfect and that’s ok.
So we need to stop the ignorance, stop the intolerance,
Stop the stigma. Stop the silence.
We need to take away the taboos.
Take a look at the truth and start talking,
Because the only way we’re going to beat a problem
That people are battling alone,
Is by standing strong together
And I believe that we can.”
-By Kevin Breel.

I agree.

Day 95

Just before Christmas five years ago, I was diagnosed with Rheumatoid Arthritis at an Outpatient clinic in the Department of Rheumatology by a Professor of Rheumatology. The same morning I was given at least 5 booklets on various aspects of the illness and the medications prescribed. They included all the relevant contact numbers in and out of hours. The side effects of the medications were explained to me. I was even enrolled into a research project that was being run in the department.

My son was diagnosed with hypomania in a very busy Accident and Emergency department during working hours. The Registrar spent a fair bit of time speaking with him and spoke with his father and me briefly as well. Medication was prescribed and his care was handed over to the Community Mental Health Team (CMHT). Aside from ‘Hypomania’ nothing else was mentioned to us. On the first day, another Registrar along with a Nurse Specialist visited us at home and asked us a few details about him. They did say that Olanzepine might cause him to put on weight. We were not given any information about the illness or the implications of it for the family. Neither were we given any reliable list of resources that we could access ourselves. A few days later I spoke with the CMHT Registrar on the phone and asked him specifically what I need to know. I distinctly remember him saying that sometimes it is just a one-off aberration in behavior. So, not to worry too much.

The same team came to see us a couple of weeks after he passed away and then mentioned that 1 in 4 patients with Bipolar will die by suicide. Did we not deserve to know this earlier on? None of the websites mention it clearly either. I understand that unnecessary worry is avoidable but I feel this is a high enough incidence for it to be mentioned to the family especially if the care is taking place at home after a newly diagnosed illness of this serious nature. Does it cost that much to get some basic leaflets printed? He was never actually seen by a Consultant. Does it cost that much for one direct consultation with a Consultant Psychiatrist?

So, parents are not well equipped with support or information and Psychiatrists loose the patients in the system. Who takes ownership of these patients? What is their life worth?

Day 94

In the month of June he went for a gig to Dublin with his band and had a great time. He phoned me nearly everyday, which was a very pleasant change from before. He shared a lot about his music and his friends. He seemed to be really enjoying himself and his drumming. He shared how amazed he was at his ability to be able to hear each little strand of sound in any piece of music and completely decipher the entire arrangements of very complex pieces. He was on a roll.

A summer prior I had felt a distance between us and shared that with a friend who said that boys need to distance themselves from their Mums to be able to establish their own identities. Not to worry, he would come back after a while and now that was happening. Yay!

He came home a few weeks later with a lot of love for his grandparents who were visiting at the time. He would be up every morning in time to have breakfast with them, which was surprising but fantastic! He was enthusiastic about taking them places and showing them around London. Wow! Finally, he was coming around.

He was full of ideas and energy. He did not need much sleep and was very proud of it. He felt he was able to read really fast and felt great about that. Sometimes I thought he spoke a bit more than normal and I put it down to youthful optimism and self-confidence. He would even make morning tea in bed for me on my days off which was like a dream come true.

It was his closest friend who spoke with me privately and expressed concern. All he said was, “this is not the friend I know, something isn’t right”. I knew, but it was not obvious what exactly that was. It was confusing. Later we found out it was early Hypomania.

Over the last few days I have made contact with his school and university as well as my hospital. I have proposed that we work together to increase awareness of mental illness amongst young people. They are the most vulnerable group and often know each other better than their parents. So, hopefully if they are better informed, they can look out for each other, like his friend did.

Thanks Hugo! You are a star!

Here a couple more songs dedicated to him by his friends:

https://soundcloud.com/dontstealoursun

https://soundcloud.com/joaquimandthesmokemachine/breathe

The drumming in the second song is by my baby. Enjoy!!!

Day 93

Of course he played video games. Don’t they all?

I have been observing my mind looking into every nook and cranny hoping to find a reason, a trigger or an explanation despite innately knowing that he suffered from an illness. Mostly it indulges in regret – I should have known better; I should have spent more time with him; I should have spoken less and given him more opportunity to share; I should have been more patient and such like. Other times it looks for clues in his behavior. The problem with that is the indistinct line between normal and not-so-normal. The latest one is video games.

He liked playing them although not for great lengths of time. Sometimes he would make me sit with him and watch him play. I did not enjoy that at all and often discouraged him as I thought they were too violent and completely senseless. For him it was just entertainment. He rationed the amount of time he spent on it so I did not worry too much.

After spending quite a while looking for one source of concise information on the link between mental illness and video games, this is what I found. Although it is one of the pages of a de-addiction center website, it is informative.

http://www.recoveryranch.com/articles/gaming-addicted-children-at-higher-risk-of-mental-health-issues/

There is a lot of conflicting material available on the subject depending on the source of publication. A co-relation between depression and anxiety disorders and Internet overuse exists. However, it may not be a causative one. In some cases it helps patients cope with their illness.

I still struggle to believe that violent video games do not have an impact on children’s psyche, however subtle.

Day 92

The literal meaning of his name is ‘ocean’. Over the past few weeks I have been mostly choosing to spend time at sleepy little coastal towns and villages, partly to feel close to him (it’s silly I know) and partly for the warm weather. The comfortable proximity of the enormous force that is the ocean and the most vulnerable being, that is the human, completely baffles me. How trusting we are, to submerge ourselves in this huge reservoir of energy and feel completely relaxed.

The 10th Anniversary of the Tsunami having passed recently, I could not help but think about it at this particular juncture in my life. The energy released in the Tsunami was equal to 23,000 Hiroshima type Atomic Bombs. 18 countries were affected, 230,000 people died, 1.7 million were made homeless and half a million were injured.

http://www.telegraph.co.uk/news/worldnews/asia/11303114/2004-Boxing-Day-tsunami-facts.html

Up until recently these were just facts to me. Now, they are a measure of the pain, suffering and sheer destruction endured by millions of families in a matter of a few minutes and hours with repercussions on their communities and countries for a long time to come.

It is also a reminder of Mother Nature, changing its mind in a fraction of a second. That is how long it takes for our world to change forever or disappear all together.
Is there a lesson in this for us?
For me, there is one: these days are the ‘good old days’ of the future. All that is, is here and now.

Day 91

On a very turbulent flight to India a few years ago, I sat next to him absolutely petrified, tightly clutching on to his hands for dear life. He just sat there fully present to my fear and me, telling me it will pass. I recall that particular air journey to be the worst one ever. I must have held on to his hands for at least a couple of hours. He stayed calm. He knew that was just me. He often made jokes about it.

The ‘seat-belt on’ sign was switched on again on the flight this morning as we hit bad weather. My first instinct was to look for his hands but then I decided to sit with my eyes closed and take long deep breaths. I could almost hear him say, “Don’t worry Mamma. It will soon be ok.”

Will it really? Today is exactly 3 months since he passed away. It is still so fresh in my memory, so painful and traumatic, so full of questions and regrets, his suffering and mine, the shock, panic, horror of it. The suddenness of it! How utterly devastated and helpless I felt then and how it is not much different now.

God, please give me the strength to do everything I can to prevent similar pain befalling anyone else. There is a tiny part of me that just wants to give up but please don’t let it win.

Day 90

Today is ‘Makar Sankranti’ – the winter harvest festival. In Varanasi it is traditionally celebrated by taking a soak in the river Ganges, flying kites, making donations to the poor and cooking a particular type of dish called ‘khichdi’ for lunch. An integral part of the celebrations for a lot of people is a glass of cannabis enriched sweet milk in the morning. In this city cannabis use is legal and shops selling the drinks can be found on the roadside like any other shops selling clothes, shoes or bottled water.

As I walked down the street this morning distributing packets of biscuits to the street kids, I saw this light in their eyes – a sharpness that comes from the will to live, the instinct to survive despite all odds stacked up against them. The contrast just hit me in the face – these kids had nothing yet they wanted to live at any cost. In comparison, young people in other parts of the world have a lot more and yet, so often don’t find life worth living.

How does that come about?

Day 89

It was a cold and foggy day of fasting, meditating, sitting on a stone floor on a straw mat for four and a half hours performing some intricate and fascinating rituals accompanied by the rhythmic chanting of 5 brahmin priests and repeating my son’s name seemingly a thousand times. All the familiar ingredients were there – fire, water, flowers, milk, honey, sandalwood, vermillion powder, tulsi leaves, mango leaves, coconuts, plenty of clay pots, yogurt, fruits, coins and notes, rice, sugar and ghee.

The aim of the prayers was to direct and empower his soul to transcend into the realm of the Gods – Brahma, Vishnu, Siva and Yama. Once that was accomplished I was glad to hear that he now belongs in the ‘higher beings’ category and I could ask him for whatever I like without shedding any tears. That made me smile my special smile for him.

My body feels like it has aged a hundred years over the past few months yet my mind feels lighter today. My breath is slow and joyful. I can see the beginnings of acceptance. I can now utter his name without breaking down inside. I’ve even noticed that every now and then I have a spell of a few minutes when I don’t think of him.

Put your thoughts to sleep,
let them not cast a shadow
over the moon of your heart.
Drown them in the sea of love.

– Rumi.

Day 88

Back in Varanasi for the last of the last rites.

There are 2 reasons why this prayer is being done. First one is to ask for forgiveness on my son’s behalf for having made the mistake of ending his own life. Secondly, to clean the impressions of sadness and dejection from the mind and memory of his soul. It is believed that we often wake up from sleep thinking of the same things that were on our mind when we fell asleep. The prayers tomorrow will be made to Lord Shiva, who is the Lord of the Living and the Dead. The Hindu belief is that He will refresh his spirit and enable my son’s soul to achieve ‘Moksha’ – the freedom from the cycle of birth and death. This is what the saints and wise men spend their lives trying to achieve.

I feel grateful to be here, once again at the seat of profound knowledge and in close proximity to the pious Mother Ganges. This is the best I can do for him and for myself now. It is another opportunity to reaffirm my faith in the Universe, keep my peace and resolve some more of the grief.

Over the last week I have established contacts with his School and University expressing a desire to work with them to increase the awareness of mental illness in young people. Both the organisations have felt this need too and reciprocated with the intention of working together to the same end.

‘Loka samasta sukhino bhavantu.’ (May all people everywhere be happy.)
– Hindu prayer.

Day 87

 

“Coaches are paid to win, teachers are valued for getting students into the best colleges. Less glamorous gains made along the way such as learning, wisdom, growth, confidence, dealing with failure are not given the same respect because they can’t be given a grade.” (William Zinsser in his book ‘On Writing Well’)

Speaking with a young lady while on holiday, I was surprised to hear that when she expressed her desire to be a teacher after finishing school, her teachers were somewhat disappointed. Apparently the only jobs worth pursuing are in ‘the city’ or as a lawyer or doctor. Was that the actual opinion of the teachers or was the reputation and grading of the school their main concern? How about education being about enabling young people to be more self-aware and empowering them to make choices that are right for them?

Ultimately, life is about expression. Be it our choice of words, actions, thoughts, facial expressions, hobbies, professions, humour or the clothes we choose to wear. Each of us is delightfully unique and brings to this planet what no one else can. How can the kids be happy when the very people and organisations that are meant to help and guide them to live their lives to its full potential want to put them into little boxes?

In a country like India where a score of 94% is not considered ‘good enough’ at A Levels, imagine how many young people feel highly inadequate. Consider how scandalous it would be, in this day and age, if a young lady spoke up and said that she would like to dedicate her life to having a lovely family and looking after them well. It would be amazing to see what the world would look like if each person could have the freedom to choose their path so that they could be the best they can be, not in terms of achievements by an external yardstick but finding fulfilment by their own parameters.