Will and Grace

It takes my breath away. Sometimes you get a glimpse of the elaborate machinations that go into assembling the many seemingly arbitrary moments of life into a meaningful purpose and you are awestruck by the miracle of it all.

At first when we took papa to a neurologist, the doctor sort of mumbled to us that he had early stages of Parkinson’s disease, hydrocephalus (water brain), and dementia. If it was not for God’s grace, I would have completely missed the significance of this. Somehow the word dementia caught my imagination and I started reading about it profusely. There were so many types of dementia and papa did not seem to fit the bill with any of them. Then God goes ahead and takes my breath away by bringing LBD to my attention. I could not believe how much all his symptoms matched and thus began a jihad to clinch the diagnosis.

It is not easy being totally unqualified and trying to tell a medical professional or anyone who thinks they have half a brain that you suspect your father has a major neurological disease called LBD which is seldom diagnosed because of its complexity and uncertainty. I felt like Galileo trying to bring the truth to an obstinate world and almost got ostracized. Thankfully mom and Zak immediately saw the merit in this and backed me fully.

I would take papa to different neurologists and freeze midway whenever they asked for his history. It was so complicated that I knew I was not able to articulate everything and God knows I am not the most lucid conversationalist. There was also the problem of letting the doctor know all the facts without hurting papa. I was getting desperate but I knew it would be unethical to force a diagnosis. I had to make them see what I was looking at and let them come to the same conclusion on their own. Meanwhile time was running out and it was imperative to get the right diagnosis for the wrong drug administered to an LBD patient can kill him (which is often the case) and this thought was haunting me.

I am humbled by the guidance that God gave me then, how He steered me through numerous obstacles, and made it permeate through my thick skull that I had to just write it all down. The solution was so simple that it was brilliant. Already the years that I slaved at medical transcription had armed me with all the right terms and format. I had already collected all the information that I had about papa. All I had to do was put it all together into one medical file with all the history, symptoms, records, test results, etc. something that would automatically have been done in a developed country but here it was unheard of.

Even the most mundane act is seldom that. One fine morning when I set about to write this document I felt like I was finally serving God’s will, fulfilling my destiny. Zak joked that I looked like Karate Kid preparing for the final battle! And what a war it has been!

An unwanted visitor called LBD

April has been a month of drowning and survival, literally and metaphorically. However while I survived the drowning and finally mastered the art of swimming at a coaching class, my papa continues to drown at a pitiful pace and there is no relief in sight. Once LBD catches hold of your loved one, it is one sinking after the other until they finally slump to the bottom. I try to collect as much information as I can about this little known dreadful neurological disease. At the same time, I struggle to remember and understand who my father is before the living entity that looks like my father now becomes more and more distant and frightening.

I like to paint in my mind the kindness, patience, and love he has bestowed on me over the years. I want to reconstruct those moments in my childhood which my mom often talks about when he used to walk all night carrying me whenever I was ill. I want to remember him as the soft-spoken, peaceful, and optimistic person that I knew him to be. I want to know about the person that mom was in love with who was handsome, vulnerable, meticulous, a brilliant doctor. It is hard to piece this together now for we do not really know when LBD truly began. I am always grateful when we have visitors who genuinely come to visit papa, for then it gifts us with those wonderful glimpses of a lucid papa who does not always exist for us in continuity. Also until now, he has always been better when we are outside, so we try to go out as much as we can for as mom says she wants to step out of this nightmare at least for a little while into a better dream.

This is the month when he lost his ability to dress himself for the most part. Now mom brushes his teeth and chooses his clothes. She takes such good care of him that to me she is an angel who suffers much in stoic silence. Mom does not remember anymore what a full night’s sleep means. So many other things that we take for granted in our daily life, she has foregone gracefully for him with barely a whimper.

In November of 2009, after pouring over the Internet for innumerable hours trying frantically to understand the causes for the changes in papa, I began to be convinced that he was suffering from LBD-the monster that brews when you throw in Alzheimer’s and Parkinson’s disease together. Then was the heart-wrenching agony of convincing others and finding a suitable neurologist who would truly understand. After several roadblocks that were thrown our way that almost shattered us, we have finally reached that stage by God’s grace.

One solace is that there are wonderful people out there who are willing to share their LBD stories, who make this journey easier by showing the path ahead. Thank you. God bless them all and may their journeys be smoother with ever His saving grace.

http://www.lewybodyjournal.org/journal/

Towards a new Avatar

Who has not faced disappointment in life? From a very early age, we start learning that all that we desire need not materialize. The tantrums of childhood usually give way to maturity and understanding in adulthood but some disappointments can still devastate us. Should life then be a string of achievements and disappointments binding us firmly to a state of emotional turmoil?

Hope necessarily brings disappointment in its wake. Are we then supposed to live through life without hope or desire?

Certainly man has pondered about these questions for centuries as is evidenced by these verses from the Bhagavad-Gita.

“When a man thinks of the objects, attachment to them arises; from attachment desire is born; from desire anger arises.”

Suppose we are capable of cultivating a temperament that lets us enjoy what we get while at the same time remaining untouched by disappointment when we fail to meet our aspirations; that would be bliss indeed.

This simple truth is expressed in the following verses from the Gita: “But the self-controlled man, moving amongst objects with the senses under restraint, and free from attraction and repulsion, attains to peace.”

If a desire is reasonable and to the good of all, we must work hard to attain it but we should have such evenness of mind that we need not shed a tear when we fail. Each person takes his own time to recover from disappointment. What we are trying to aim for is a reduction in the recovery time such that recovery becomes almost an instantaneous reaction.

Then alone would we be able to accept life as it comes, submitting peacefully to the will of God. Islam literally means peaceful surrender to the will of God and a true Muslim is one who has mastered his senses. Anger has no place in his heart. While appreciating one of the numerous instances in which the teachings of two great religions of our country and common sense merge seamlessly, let us try to incorporate this adage into our beleaguered lives and strive to be reborn as a new Avatar in tune with nature this New Year.

A lost thought

In the deep recesses of his heart,

There once was a rumble.

A wave of thought arose

At first feeble and humble.

Not yet a ripple, she rode on

Imbued with scant emotion,

Bereft of any smart notion

Of love’s foibles

Or Destiny’s fables.

With hopes of grandeur

Garnering new ideas

She grew too dense and weak.

And soon petered out,

Unknown and unappreciated.

Another kind of love

Is love an elusive ideal that we hanker after in vain? Or does love make the world go around?

Of late, I have had many people confide in me that they do not feel any love in their hearts anymore. Most people suffering from depression or recovering from trauma or menopause also tend to think along similar lines. They feel that they float atop the uncharted waters of life, dutifully serving their families but totally bereft of any true warm feeling in their hearts. This is not something that people are willing to admit easily and great courage is required to even come to terms with this unpleasant truth. However, I am also beginning to realize that a lot of people have fallen prey to this emptiness at one time of their life or the other. What would cause love to vanish from our hearts?

Sometimes love causes so much pain that we let it be washed away by our tears and unwittingly make ourselves immune to its charm. We cannot bear the intensity of our emotions and shut ourselves up in that safe place where no hurt can reach us. We might delude ourselves into believing that we are untouched by outside events whereas in reality we are just totally unprepared to face any turbulence due to our fragile nature. Should we despair that we have fallen into such a terrible state?

Waking up to an empty heart is not easy. Every morning we painstakingly collect our limbs and drag on in limbo, blind to the beauty of life. At some point of time knowingly or unknowingly, we decided that the unpredictability of life and others was too painful to handle and withdrew into a cocoon. Fortunately this too can be a good thing if we want it to be. Like the proverbial larva that metamorphoses into a beautiful butterfly after its solitude, we too can outgrow our shells and discover our inner beauty.

First step as in any recovery is acceptance and the will to grow as a person. There is so much that we already know more than others who have not yet faced such terrible pain, like the volatility of life and the inevitability of change. Earlier we loved and gave with so much passion like everyone else but in return we were only disappointed and hurt. What expectations we had! And what little we gained! We have burnt the bridge with that love. “Enough is enough,” we said and embarked on a new journey. So now where is that going to lead us?

Though we do not recognize it, we are but at the threshold of learning a more effective way of loving. This love can never disappoint for it is a love without expectation where the reward is nothing but the very act of love itself. The very first time we do anything for another person without expecting anything in return, we learn the baby steps of this kind of love. Try making some extra food and giving it to a homeless hungry person if you want to know this feeling. The smallest act of kindness done without compensation will light a spark within you that will slowly burn brighter and expunge the darkness within. We have to feed it constantly and in time we will learn to love better and wiser.

All love starts and ends with self-love. At first is the recognition that you are not your body but something finer within. This means we have a responsibility to our own body as it is but a creation of God like everything else around us that we have to nourish and make the best use of. Will we starve our pet dog or our children or try to cause them injury? So too our body not being our own has the first right to be looked after. Proper diet and exercise are thus but an extension of this realization.

What about your mind? You think you are your mind? A few moments of quiet contemplation will expose the fallacy of that belief. So we have a responsibility to our mind as well. Will anyone willingly trash their home and clutter it with junk? Why should we then do this to our mind which is more precious than any material thing? We must learn to clear it of unnecessary thoughts and nurture the right ones.

Thus having learnt to put our mind and body to proper use and nourish it with respect and care, we are well equipped to embark on a new and more exciting journey that will teach a better love. We know its first steps are detachment but what is this detachment that we hear so much of? Is it being so sure that you are going to be hurt that you brace yourself every time you interact with someone thus avoiding disappointment? Of course not. It is the very opposite of that. True detachment is giving all that you can even to our worst enemies with a heart so full of love and faith that no one can hurt us for the very process of loving feeds and nurtures our heart completely. It does not leave any want or desire that has to be met externally. We will also not do anything to hurt our own mind or body because we recognize its true nature.

Most of us learn to love the easy way. Splurging all devotion and attention on the object of our affection. Straining our body and mind to keep them happy. Heartbroken when it is not reciprocated. This kind of love easily turns to contempt and hate in no time for it is a love that we cannot sustain. It is a love without any respect for ourselves. It might seem selfless but actually it is selfish and too demanding which will necessarily end only in disappointment.

When we let go of our expectations and let ourselves and others grow, then a love will blossom that is a joy forever.

War and peace

In our personal lives as in our public, we encounter numerous situations that seem unfair and unjust. Most of these challenges seem so insurmountable that we are vexed by it. We are convinced of the justness of our cause and angered by the injustice meted out to us and the more we try to solve them, the more we seem to be sinking into a fury from which there seems to be no escape. In our minds, we rationalize our violent behavior as a desperate measure to earn well-deserved justice but in truth we poison ourselves with the very hate that made us its victims.

Consider a housewife who has no opportunity to explore the outside world but is shackled in the seclusion of her home by household responsibilities like raising children, cooking, washing, etc. She resents the isolation and the perceived degradation of her intellectual acumen, loss of respect, and financial dependence, and envies the freedom enjoyed by her husband who trots in and out of the house with ease, unhampered by monotonous chores, mingling with friends and coworkers; a freedom that she feels is denied to her. The more she ponders about the unjustness of her situation even though she may be extremely loving and caring and a great mother and wife, the more vexed she will become. Soon the very home, she wishes to make a haven of peace and happiness through her sacrifices, take on the appearance of a prison that seems to throttle her dreams and aspirations.

Consider the victim of a communal pogrom, riot or ethnic cleansing. His helplessness, anger, and victimization seem undeniable, the wickedness of his tormentors unquestionable. As societies and countries move on, forgetting and sometimes even denying true justice, wounds fester and righteous anger takes on dangerous proportions until existence itself becomes undesirable and revenge the only plausible solution for peace.

Consider the victim of incest, parental abuse or alcoholism. The victim is convinced of the rightness of his anger, the cruelty of the perpetrators and the need to punish and/or obtain justice. In his mind, peace can descend only when justice has been rendered.

In all these situations, we find that the justness of the victim’s cause is undeniable and the very raison d’être of his anger comes from justice not being delivered. The core belief is that peace can exist only when justice prevails but that alas is its real tragedy. For peace, like happiness is subjective.

If you decide that there will be peace, then there will be. This very moment you can choose to revel in its soothing glory and be calmed by its descent or you can cling on to your bitterness and be destroyed by your anger.

This is not an easy path to follow and every moment we have to renew afresh our determination to remain peaceful. Sometimes crises arise which shake our resolve but we must persevere and get up after each fall.

Does this approach make us run away from our problems?

On the contrary, our decision to choose peace is the first step towards creating an atmosphere which will help us work fruitfully towards our genuine goals. This peace that I am willing to open my heart to, the loving surrender of my trust to God is for me Islam, my religion.

Question of the Day

Pursuit of truth is essential for the survival of any society especially a democratic one. Enlightened debates form a part of the process. Public awareness of policy decisions and its true impact is the cornerstone of any democracy. Raising valid questions regarding the veracity of the worldview that a government tries to project is an important step in that direction. Dismissing such attempts as dissent and heresy subverts freedom and the very principles on which democracy stands.

Ideally in a democracy, majority voice should be the loudest and the most powerful. However in spite of many safeguards, there is a real danger of power falling into the hands of a minority. In most societies, wealth is concentrated in the hands of a few. Only the most naïve can deny that wealth translates into power even in a democracy. Wealth always seeks to gather more wealth. When corporate and economic interests collude with political interests, more often than not national interests take the backseat. How can minority rule be viable in a democracy “for the people and by the people” that explicitly champions the power of majority? The answer is disinformation, misinformation, and plain no information.

My question to you is, are you aware of such trends in your country? Does government policy always mirror public opinion? Have there been efforts by your government to divert attention from the real issues such as poverty, corruption, and environment? If so, what are the tactics employed? Do you believe everything that your government tells you? Are you aware of a media-government-corporate nexus? Is your government’s worldview at variance with the rest of the world? If yes, which would be the most outstanding example? What is the source of your information?

Thank you for participating.