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Sunday, December 29, 2013

How to cope with suffering?

This post is a continuation of my previous two posts : How am I coping ? and Spirituality of suffering

Where does suffering arise from? Happiness or suffering are emotions which arise from within us, from our brain. They are not external forces which are beyond our control like earth quakes or tsunami; they arise out of our thought process. Hence we have the capability to change how we think about a particular situation to avert suffering.  For example, after a long struggle of infertility treatments , I finally conceived. I carried my most precious little ones for 5 months , with so many dreams and expectations. As we are thinking that finally everything is now falling in place, we lost them to an incompetent cervix at 5 months. Now I have two ways to respond. I can tell myself, ‘this is the end of all your efforts; you will never have a baby. You are getting old and all your struggles are for nothing. You are so unlucky and you must stop thinking about a baby and get on with your life. You must have done something very wrong to endure this pain. Look around you, there are so many fertile women who have their baby without any problem, you are defective. Maybe you are not destined to have a baby. Even if you put in more efforts to have a baby , what is the guarantee that you will be successful?’ I can keep on thinking like this. Every such thought has the ability to cause enormous suffering. 

On the other hand I can choose to respond like this too, ‘What happened to you is of course very unfair and painful. You must accept the fact that life is unfair. You have fought bravely against infertility and you deserve a little one in your life. You will be a wonderful mother. You must do everything in your power to make your dreams come true. You just need to put in a little more effort. You are not alone, there are so many women who are going through what you go through and the wisest and most resilient ones do reach their dreams. Once you have your little one , all this pain will vanish. This struggle has helped you to shape yourself into a better human. It has helped you to appreciate your blessings in life. You must work patiently and bravely to bring your dreams to fruition. You must remember that there are still many ways to have a little one in your life’. This kind of positive, hopeful thinking will help to deal crisis in life a better way. It doesn’t matter what happens to us , but how we think about what happened to us matters a lot.

Even during most difficult times in life, even if we lose everything (nothing in life is permanent), the only ability which we will have our hands is to decide how to respond to a particular situation (nothing can take away that ability from us). We can become bitter, frustrated and depressed or we can become better, brave and more humane. Suffering doesn't have any meaning by itself but as humans we have the ability to make our suffering meaningful.

Desire is not the root cause of suffering. Desire is the driving force for life. Without desires life would become extinct. Desires are what gives meaning to our life. Suffering can’t be eradicated; suffering is a part and parcel of any life , just like happiness is. If happiness gives us the courage to thrive, suffering gives us the ability to accept our happiness more gracefully. Suffering is the inability to accept things as they are; suffering happens when we want things to be different than what they really are. If we are able to train our mind to accept things as they are, rather than what we wish them to be , then one can successfully reduce suffering. This kind of ‘letting go’ or ‘acceptance’ comes when the mind is adequately trained. Many religions insist on the importance of training our mind via meditation and mindful living so that suffering can be minimized.

Friends, as you can see , I am trying my level best to transcend the suffering which I am going through. I am learning how to deal with life crises. Of course it is not easy. I am having bouts of depression. I sometimes wish there was a magical wand which could bring back my little ones (my mind still craves for a different outcome). On the other hand , this experience has changed my views about life enormously. I appreciate all my blessings in life even more. I have understood the importance of a calm and concentrated mind, a mind which is indifferent to the fruits of action. I am planning to learn some meditation techniques and yoga. I am very proud of myself and my DH; we handled this difficult time pretty well. I am very, very thankful to everyone who helped me with their kind and encouraging words. We are thinking about our next course of action. We have also decided to take a break from our routine and spend some time with our loved ones. We are in the process of healing, it does take time. I wish to write a lot again and have more experiences to share. I wish you all a very happy and blessed 2014!

Thursday, December 26, 2013

Spirituality of suffering

This post is the continuation of my previous post 'How am I coping ?'

I am surprisingly not angry with God. My definition of God is different and hence I didn’t feel that God had betrayed me. I did pray to God to save my little ones; I cried aloud when I was left alone in the hospital in the middle of the night, but I knew in my heart of hearts that I should ask for the strength to bear whatever comes my way , instead of asking for something which doesn’t have any meaning.  I have always felt much closer to the super power when I am in pain than when I am in joy. I find comfort in the warmth of God when I am in pain – just like a child finds comfort in his mother’s lap when it is ill.

Is there an explanation for the suffering we underwent? We needed a little one in our life and we tried our level best to make our desire come true. A baby is something most couples get very easily but we needed to fight hard for our rightful desire. We fought happily , putting in all our best efforts – and yet we ended up with nothing but pain and broken heart. Is it possible to lead a life free of suffering?

Buddhism says that desire leads to suffering. When we desire something , we get attached to it. Nothing in this world is permanent and since we get attached to impermanent things , we are bound to suffer when we lose them. I want to have children. Although it is a rightful desire it does lead to suffering. I wouldn’t suffer so much if I didn’t desire children and if I hadn’t developed an attachment to my kids. While some humans are ready to throw away their newly born children in the garbage can without a pang of remorse, I suffered a hell of a lot of pain when I lost my babies , who were not even completely formed.

But is it easy to let go of my desire to have children just because of the fear of suffering? If I let go of the desire to have children I might not suffer emotionally, physically and financially, but will I be happy? Definitely not! Although a life free of suffering seems to be happy , this is not true. When you want to be free of suffering , you must have the courage to let go of happiness too. Suffering and happiness are inseparable. When you think clearly , it becomes clear that whatever brings you happiness is exactly that which brings you pain and suffering.  If we need happiness we need to accept suffering too.

Is it possible to let go of desires? Of course not - even a saint’s action is motivated by his desire to attain moksha (heaven) and to lessen suffering. So, a desire is the driving force for any action (both good and bad).  If we do not desire anything, we are most likely to lose the joy of living. Is it possible to desire and yet not suffer? Bhagavad Gita says it is possible and shows the way too. A desire leads to an action and if we detach ourselves from the outcome of that action we can escape from suffering. But we need a lot of mental discipline to achieve such a detached state of mind.  In the Bhagavad Geetha , Arjuna was told:

Be intent on action,
not on the fruits of action;
avoid attraction to the fruits
and attachment to inaction!
Perform actions, firm in discipline,
relinquishing attachment;
be impartial to failure and success this
equanimity is called discipline
                               - Bhagavad Gita

Bhagavad Gita also shuns attachment to inaction. In short, inaction is not the solution to escaping attachment and the ensuing pain and suffering. Inaction just implies there is no more life. Inaction is the sign of death. Instead, following our rightful desires, in a rightful manner and being indifferent to the outcome of our actions will protect us from pain and suffering. If we could achieve this state of mind, it is a form of immortality. During physical death our body is destroyed but our soul remains unaffected. On the other hand, our spirit dies everyday due to emotional assaults we face. If we become indifferent to pain and suffering , our soul reaches a state of bliss, a state of immortality! Perhaps this what ‘moksha’ (heaven) is, which many religions advocate as the final destination of human existence! This means that heaven cannot be a place we go to after our physical demise, it is a state of mind which must be achieved when we are alive.

In the next post I will talk about how to cope with suffering.

Wednesday, December 25, 2013

How am I coping?

I am getting better each and everyday. In the beginning I didn’t think I would survive this crisis in my life. The first few days after losing my little ones were hell. The day after giving birth appeared surprisingly easy and peaceful. We slept well after a long time that night. There was definitely a sense of relief - relief from always having to be on bed rest; relief from having to take all the medicines; relief from the fear of losing them; relief from uncertainty ; and relief from praying and hoping all the time. There was a sense of peace which arose from letting them go after the struggle. Everything has ended and that was it!

The days which followed were unbearably painful. I had an empty uterus and empty hands too! My heart was unable to tolerate the emptiness it felt. I was afraid to see myself in the mirror. How can I see myself without a full belly - the belly which we were so proud of! I was afraid to keep my hands on my belly while earlier I was unable to keep my hands off my belly. I wanted to forget my little ones as much as I wanted to remember them. Feeble cries of a baby elsewhere made me want to run and hug it. I really longed for the warmth of a little one. I was struggling inside - won’t someone give me an infant so that I can pour all my love and affection I had stored so patiently for my little ones.

The most painful part is not losing my little ones but seeing my DH suffer. I saw him break down, I saw him cry. I wished I could remove his pain. I wished I had not been in his life. I hated myself for causing him such suffering. Wouldn’t his life been better if he had married someone else? When I was pregnant I saw a mother in him. He took care of me and his two little ones more than any mother would take care of her children. He carried so much love for the little ones. I am sure he is the best dad in this world and best husband too. I fell in love with him all over again.

I was in the grip of guilt and fear. There are people who knowingly or unknowing made my guilt worse with their assumptions: ‘Manju, you should stopped working; you should have gone to India; if you had been sensible you would have opted for a single embryo transfer; you should have accepted the cerclage’ – how easy it is to advise someone when we are not in their shoes! The guilt that I wasn’t able to protect my little ones haunted me.

I was in enormous fear and I still am. I saw the impermanence of life. I saw how fragile our dreams are. When we hear of death elsewhere, it rarely has a strong impact on us. We routinely read about deaths in newspapers; we hear about earth quakes and tsunamis taking away thousands of lives at a time. We easily forget this news, and get inured to it. Even a death in a neighbour’s home doesn’t have that much of an effect on our views on life. But once we have personally glimpsed death, it shatters us. The only undeniable truth in this world is that we will all die and we all have an expiry date. It is easier for me to accept that I have an expiry date but I couldn’t digest the fact that all my loved ones have an expiry date too. Sooner or later , they will depart , leaving me alone. I am still fighting with this truth in my mind, the most horrible truth. How will I overcome this fear? Will I ever be able to get over it?

My next post will talk about spirituality of suffering.

Thursday, November 14, 2013

Patient Advocacy in India - giving voice to the patient

Do you know which is the scariest place in this world ? Any guesses ? 

One of the scariest place on this planet is a hospital ! This is true when you yourself become a patient – and is even more valid when your loved one is lying there , struggling to get well. Being ill robs you of your ability to judge rationally and take appropriate decisions. A hospital environment is a different world in itself - you enter into it believing , hoping and praying that your health problem will be solved and all will be well. You assume that doctors are angels working hard to protect you and save your lives and that they know everything which is needed to safe guard you. 

But once you find yourself lying in a hospital bed , you realize that being in a hospital is like being trapped in a world where you do not know the language, the inhabitants , and the culture ! You start to panic. Your doctor might speak in a language which you cannot understand ( because he uses medical jargon), and subject you to many tests and therapies (sometimes very painful ones) . When you are not sure what is being done and why, you start wondering whether the tests are really necessary or if it is just a way of taking away your hard earned money.  Most doctors start treating you like a broken object which needs to be repaired and forget that you are a human being with emotions. This happens because they are too busy to talk to you and clear your doubts and fears, while some are burnt out , and don't really care for your emotional well-being. As a result you might end up becoming emotionally exhausted and your mental well-being will be at stake every passing day. 

You do not know whom to ask for help to clear your doubts and concerns and how to get the best out of the many splendid resources that are available in the hospital. This is very true in case of couples who undergo IVF treatment too. You go to the clinic with the innocent expectation that you will come back with a baby . You soon end up frustrated because:

you don't understand what your doctor is telling you;
why you are being charged so much and for what procedures;
why you are being subjected to numerous tests ;
what your doctor is looking for; and
why your embryos refuse to implant even if they look super good .

Sometimes you start wondering if you are receiving the best treatment possible or if you are just being taken for a ride ! Difficult situation, isn't it ? 

The bitter truth is medicine has become a big business. Many doctors are more worried about their bank balance than their patients’ well-being. Many corporate hospitals operate with their profit in mind , rather than their patient's safety and comfort. In such a situation how will you feel when you find a saviour :

who is knowledgeable enough to communicate with your doctor and at the same time explain to you in simple terms what your doctor is thinking ;
who can protect your rights as a patient;
who can question your doctor about why he is ordering particular tests and therapies and their validity ;
who can understand what you are going through emotionally , and is empathetic enough to infuse you with realistic hopes;
who can help you make sense of hospital bills and question the hospital administration if there is any discrepancy ;
who can help you fill medical forms for claiming reimbursement from health insurance policy;
who can keep a constant vigil on your treatment so that you are safe - guarded from potential unintentional medical errors which may even endanger your life;
who can help you access all the available resources in the hospital in times of crisis –
in short, a person who is your teacher, friend, philosopher, guide and savior during your difficult times in the hospital !

Are you wondering whether such a person exists ? Yes they do, and in the field of medicine they are called patient advocates. A patient advocate is a person who is your confidant, who speaks for you, who works in your best interests, who helps you to navigate through the complex health care system and educates you about your medical problem when your health is in jeopardy. 

In the past, when the field of medicine wasn’t this complex , it was easier for a knowledgeable family member to take up the role of being a patient advocate. But today , when so many new discoveries are being made in the field of medicine, there are a mind-boggling number of different treatment options available to treat a particular condition. Even doctors are perplexed by medical complexity and not every doctor keeps himself updated about the advances in their particular field. This is why deciding which treatment option is best for you is not an easy task. Such a complex situation with multiple variables, combined with a doctor who does his job mechanically (by mindlessly applying the same treatment approach to all his patients , irrespective of their individual needs) can prevent you from getting the best treatment possible. 

However, if you have a patient advocate by your side , who understands you as a person and cares for you; who is willing to thoroughly research your medical problem and treatment options; and who is happy to spend the time and energy to teach you, so you can jointly decide what kind of treatment will benefit you the most, you will start to feel confident and well-cared for during your difficult times in hospital !

A patient advocate can be your relative, a friend, a patient who has been through what you are going through now (and hence has gained immense knowledge through experience ) or someone who does it as a profession or even an organization which gives voice to the patients. A good patient advocate must be knowledgeable, must have good communication skills (because he acts as a bridge between you and your health care team), must be patient and empathetic enough;  and who is available for you around the clock. Above all a good patient advocate will be a good teacher as well as a student – someone who is skilled enough to help you understand your health problem , and one who is willing to educate himself and constantly update himself in the field he is working.

Patient advocacy is not a new field as far as western world is concerned. But in India the concept of patient advocacy is still new and growing . I am sure sooner or later patients and hospitals in India will encourage the importance of patient advocacy .

Through this blog , I work as a patient advocate ; and it gives me immense satisfaction that I am doing my best to help people who are in a similar situation as I am. So please do write to me if you need help in understanding your IVF treatment. I will be happy to help educate you (as far as my knowledge allows ) about your condition , so that you have realistic expectations; andcan  select a treatment option which will work best for you; so you have peace of mind you did your best.

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