Patient Stories – Dr Amrita

April 13, 2019

No… two… no, no, three!

Jason* is one of the cutest three year olds that you could ever meet. He has eyes which actually twinkle brighter than Sirius and are constantly dancing with wonder like the Northern Lights. His smile is a mix of a hint of shyness, loads of what-mischief-should-I-do-next and tonnes of just pure happiness… a smile that hardly ever leaves his face (even when he is really sick too!).

Jason’s cough

Jason had been to his grandparents’ place. He had developed cough and had been brought by his father to the clinic. Homoeopathy is a customized medicine system and we have different sets of medicines depending on whether you fell ill after you had oily food, cold drinks, simply over ate, or… (you get the drift, don’t you?) With this in mind, I was asking Jason’s father if he knew what had triggered Jason’s latest episode. His father admitted that he wasn’t sure as he had not accompanied Jason, “Actually the kids had gone with their mother. And she couldn’t make it here today. It could be any of those things really, you know how it is with grandparents never saying no to kids!”

The predicament

Jason’s sister who is five years old is quieter, more composed and it takes slightly longer for her shyness to thaw. She had been observing this conversation. You could see on her face, the ‘should-I-tell-or-should-I-keep-quiet’ debate that was going on within. Finally she decided that it would be better for Jason if she did. To keep it subtle, she whispered to her father, in her mother tongue (how kids possess such wise judgement is something that always amazes me!)

I waited as her father translated, “She said he had an ice cream there.” I turned to Jason to see his reaction. Will he have a guilt-ridden face? Will he be angry at his sister for ratting him out? Will he be scared of a backlash from his father?

Out of the blue

What Jason did next was totally unexpected… He jumped off his stool and held out four stubby fingers. “No, not one, I had two… no, no three three ice creams! One pink and two white!!” “Oh wow” I replied reflexively, “You enjoyed them, didn’t you?” Jason nodded with a dreamy smile and his wide Disney-character-eyes brimmed with excitement. You should have seen the sheer ecstasy on his face as he relived that delicious memory of having three ice-creams at a go!

Clean Glasses, not Kaleidoscope

What a beautiful state of mind, I thought to myself. To just see things for what they are, without any prejudice. To not think of it as my sister complaining about me, to not worry about my father scolding me or my doctor judging me. To just take things at face value. ‘I had an ice cream and boy, was it yummy!’ To leave things at that. No shame, no guilt.

Wouldn’t it be easier if we too could clean up our glasses of the colors of emotions and past experiences? Wouldn’t it be better to just view things as they were, rather than through a complicated kaleidoscope? No ‘she always does this to me’. No ‘he did it on purpose’. No ‘this always happens to me’. Just facts. What a pure way to look at life!

* Name changed to protect his cuteness from the evil eye (just kidding!)

July 21, 2017

A Mother’s Predicament

“I have decided I will kill my son.” (I could feel my eyes popping out of their sockets. Calm, Amrita calm, I told myself. She really dotes on her mentally retarded son. She wouldn’t do anything drastic simply out of frustration). I steadied my voice and asked her, “Why would you say that?”

I will kill my son

“Doctor, I am 49 now, how many more years will I be around? Fifteen or twenty at the most. His father left us when he was five because he wanted a better life. If his own father couldn’t take it, how will anyone else? I cannot imagine leaving my kid all alone in the world like that. The day I turn seventy, I will kill my son and end my life, before I become incapable of taking care of him.”

Preeti said this with a shrug of resignation, but her moist eyes gave her away. (My heart went out to her. How much it must have pained her to decide that this was the only solution! Why did some people have such tough lives?)

Another mother

Coincidentally (or maybe not!) the next appointment was Aasma, the mother of an autistic ten year old. I had been seeing Aasma since the last five years when she would come for her daughter. I had always admired the inner courage of this soft spoken lady. Now when I got to know her better as she came as a patient herself, my admiration turned to awe. Aasma had not been encouraged to study much thanks to a conservative background before marriage.

But when her daughter was diagnosed with autism at age four, she finished her graduation and went on to become a special educator. Her supportive husband always proudly talked of how she would manage her daughter’s various trips to the speech therapist, occupational therapist, special school and various doctor’s appointments along with her own studies. And now, she was studying to become an MBA! Amazed, I asked her what had inspired her.

I have an idea

“The more in came in contact with parents of such kids, the more I realized how blessed I was. My husband never once grumbled about spending so much on various therapies for my daughter. But I met so many parents who weren’t as lucky as me. That’s why I thought I would become a special educator and do something for these kids.”

“Why the MBA then?”

“This may seem silly to you doctor, but I worry a lot about what will happen to my daughter lest something happens to us. We have a close knit family and I am sure they will look after her. Also I believe that God-willing I will be able to make her independent enough to live a decent life. But God-forbid, should she need any help… So I have this idea. Umm… it seems a little too unrealistic now…”

I nodded encouragingly for her to open her heart out. She shifted uneasily in her chair and took a deep breath as if to suck in as much courage as she could, and went on, “I want to open something like an old age home for these kids who may outlive their parents. I know how it is to lie awake at nights, fighting a losing battle against unanswered questions like – what after me? If we like minded parents could all rally together, we may be able to put out each other’s misery. I know nothing about venture capital or risk management of a business. So I thought…” Woah!

Two stories, One learning

It’s true that the two mother’s stories and their predicaments were not exactly the same. But what had led to such diametrically opposite outlooks towards life? Would Preeti’s outlook have been slightly less bitter if she’d had the support of a kind spouse or sibling or parent? I don’t know.

But I do know now, why some people face such hardships. Only when you have truly suffered a pain, can you know what the other person is going through. And only when you truly know what they are going through, can you help them the best.

September 4, 2016

Cancer was the Best thing that Happened to Me – A Cinderella Story

“About six years ago, I was diagnosed with breast cancer”, the beautiful forty six years old Mrs. Sapna Mirchandani* began narrating her case history.

(Oh no, I told myself, Brace yourself girl. You can’t get all mushy now. You have to keep your cool if you want to think straight and help her.) I clenched my jaws and steadied myself for a heart wrenching tale of how Cancer had poisoned this lady’s life. She continued, “Cancer turned my life upside down. It was the best thing that has happened to me in my entire life.”
“Uh…huh”, I nodded, “Wait… what??!!” (Man, this was one unique story!)

Chores, Chores, Chores:

“Yeah”, continued Sapna, almost enjoying my confusion in a smile that she tried to suppress. “You see, earlier, my life was all about running from one chore to another, caught between my kids and husband and mother-in-law. All the time, I would constantly think about what I had to do next – make my husband’s tiffin, get my kids ready for school or college, drop off my kids to their classes, look after my mother-in-law, attend to my parents or relatives, cook, iron, clean, dust… (Though it’s the same story for most Indian housewives, isn’t it exhausting even just to listen?)

And you know what Doctor, I never took time to enjoy any of this. I was too scared to try cooking new recipes because I was afraid my mother-in-law wouldn’t like it. When I was getting my kids ready for school, I was too busy thinking of my next task, rather than enjoying the time I got with them.

The worst part was, all this was self-imposed. Everyone around me must have seen how unhappy I was, but I turned them away. We could easily afford help, but I refused because I thought it would mean I wasn’t doing my duty. (I learnt later that her husband was a very successful businessman and when she said ‘easily afford’, she meant ‘really really easily afford’) My mother-in-law is a very nice lady (I told you, this story was unique!) but I declined when she volunteered to help. If I ever did find time to go meet my friends for an hour, I would rush back in half the time, worried that I would be needed at home.”
She was a modern day Cinderella, I thought. A Cinderella who was burdened by her chores, living her life unhappily for others.

Getting Diagnosed with Cancer:

“And then, I was diagnosed with Cancer”, Sapna continued. “It was such a peaceful time for me. I did not have unbearable physical pain. And thanks to the chemotherapy, I wasn’t allowed to meet too many people. (Certain chemotherapy knocks down your blood’s good fighter cells too, lowering your immunity temporarily. Hence, chemotherapy patients are advised to avoid contact with possible sources of infection including crowds.) We hired a temporary domestic help. My husband would mop the floor so that the maid wouldn’t have to come to my room. My mother-in-law cooked for me. My kids looked after each other. And me… Ah! I had all the time in the world to do things I had put off for years! I read a lot…about people who had battled cancer, about spirituality.
It was like a pause button on my life. I had a chance to review my past years, to realize why I had been so unhappy and to introspect on how I could mould my life ahead.
It struck me – all my perceptions about my duties or what my mother-in-law or husband would say were just that – my perceptions! It was all in my own goddamn head.
This modern day Cinderella had her False-notions-of-Duties for an evil step mother and Towering-Expectations-of-herself for step sisters. They were keeping her from enjoying life, nay even living life.

Cinderella’s Fairy God Mother:

What had changed Cinderella’s life after she met her Prince Charming? Was it becoming rich or finding the love of her life? I think not. She probably worked just as hard after she became a Princess too. I think the magic happened when her fairy god mother opened her eyes to the possibility that she could be a pretty, lovable Princess who could steal the Prince’s heart. As for my modern day Cinderella, Cancer came like a fairy god mother for Sapna.

After this introspective pause of self-realisation, Sapna turned her life around. She hired the maid for good. Her husband opened up a small business for her, which let her spend 3-4 hours outside the house, doing something of her own will. She made more frequent plans with her friends for going to the movies or plays. She joined a couple of cancer support groups so that she could help other cancer patients deal with their suffering. She tried new things, laughed more, loved herself more and gave more joy to her family.

Sometimes, patients give you much more than you can return. Sapna left me with a high that no marijuana could! I promised myself that day – I would not wait for a fairy god mother to come and wave her magic wand to alter my life. Once every year – on a birthday or on new year’s – I would give myself a pause. A pause to reflect if my life was going in the personal, professional and spiritual direction that I would like it to. If not, I would see to it that I kept correcting my course regularly before it was too late. After all, not all magic happens overnight; some magic takes months, decades and even lifetimes…

*Name changed

July 10, 2016

Does an Ostrich-Patient Live Longer ?

“Good Morning Doctor” beamed Gagan* in his loud booming voice.

You couldn’t help but bask in the sunshine that this simple man brought into the consulting room. Gagan was a 45 years old ex-army man who suffered from Ataxia. Ataxia is a condition of the nervous system in which movement is affected. (This means that Gagan tottered and slurred like a drunk, without actually drinking).

Undampened Spirits:

Gagan’s Neurologist had declared the inevitable fate of his disease, “There’s nothing much that can be done, you’ll have to live and die with this”. However, it didn’t seem like this had dampened Gagan’s spirits. (I confess, I even wondered how much of the medical mumbo jumbo had made sense to the poor soul.) Gagan would thrill me every month with his dedication to the advised exercises and his progress – “I can now lift a bucket of water”, or “I went through the entire month without a fall”.

A Stark Contrast:

Gagan always reminded me of another Ataxia patient, Prof. Dandekar* a 42 years old Lecturer of Physics. In contrast to Gagan who couldn’t even pronounce the full name of his disease (Spinocerebellar ataxia can be quite a tongue twister), Professor Dandekar was almost a master of his disease – the incurable pathology, the limited treatment options, even the latest research. I would have to read frantically so that I could keep up with him! He was improving slowly and steadily, as is expected for someone with his pathology. But it was not as fast as Gagan.

One day the Professor’s wife grumbled, “Doctor, every spare minute that he gets is spent researching about how soon he is going to become wheelchair bound.” The Professor’s counter-argument was not weak either, “If I know what I am dealing with and what to expect, I can be better prepared.” It was then that I began wondering…Was Gagan recovering faster than the Professor because of his ostrich-like ignorant bliss? Do Ostrich –patients live longer?

A Heavy Orange:

If you compare both men, Age group: similar, Progress of disease symptoms: similar. I must admit, their illnesses were not exactly the same. Gagan’s ‘Spinocerebellar Ataxia’ and the Professor’s ‘Friedreich Ataxia’ have different patterns of genetic inheritance. But it isn’t like comparing apples and oranges – it’s more like comparing the mandarin orange with the sweet orange. Not too different, right? How then, had Gagan made a beautiful juice with the orange given to him, while the Professor had got bogged down with the weight of his orange?

Multiple studies (like this) have been conducted since the 1980s where they asked people to rate their own health. These people were then tracked over decades and it was found that those with poor self-rated health were found to be associated with higher mortality rates. And surprisingly, medical history, heart disease risk factors, and education are not able to explain the association completely. So if you think you are healthy, you are likely to live longer, sometimes even irrespective of your actual health!

What killed Vickie:

In 2014, 23 years old Vickie’s parents petitioned UK’s Health Secretary for patients of terminal illness’ right not to know. Vickie was suffering from AML, a blood cancer she had been battling on and off since 2012. Vickie’s parents alleged that she had died within two weeks after she was devastated by her doctor’s explanation of her low chances of survival. What really killed Vickie – the cancer or the hopelessness of cancer?

Off course, there is no denying the fact that for almost all diseases, the earlier you get diagnosed, the better your chances of treating or even preventing the disease spreading to others. But sometimes, people like Gagan really make you wonder whether knowledge is power or ignorance is bliss. Was the knowledge of her incurable disease responsible for taking Vickie’s life? Would the Professor have healed faster had he not been informed that he would continue to suffer from a progressive illness that would kill him one day? Would you rather be an all knowing owl or the supposedly stupid ostrich? If you ask me my honest opinion, I do not know. These questions remain unanswered for me, at least for now.

Or would it make more sense to know a little about your disease but still have a hopeful belief and work towards recovery? I guess a little moderation never hurt anyone…

*Real People, But Not their Real Names.