Dementia and us.

This post first appeared on the Ziauddin University Atlas.

When the same eyes that have once looked at you with adoration haze into a struggle for recognition, it does a little more than break your heart, doesn’t it?

Dementia, described in simple terms as a disruption of the brain’s functioning leading to behavioural changes and loss of memory, is easily – and sadly – one of the hardest ailments to deal with, simply because of the emotional implications for the patients and their families.

The ageing patient might not recognise who you are. They may think it’s the winter of 2012; you tell them it’s 2018 and the heat wave is bad this time. You cut out a few slices of a rosy apple for them and they will keep it in their mouth – chewing and swallowing long forgotten – till you chide yourself for not giving them an easy-to-swallow meal of mashed bananas and warm soup. Your back may ache from helping them move around because sometimes, they may just forget that walking requires you to move a leg. They will be irritable, anxious, confused. But so will you. They will see the shadow of a man where your favourite curtains hang and they will tell you how their dead relatives came to visit them. They may occasionally get scared because they will feel ants and mice scurrying around their bed.

But it’s okay. It really is.

They say old age is synonymous to infancy and it’s very, very true. The same unconditional love and inexhaustible patience that was once lavished upon you needs to come full circle; they need you the way you once needed them. And the kindest way to show them this love is by honouring them and giving them a life of dignity.

Medications will definitely do what they are supposed to do but let us not undermine the power of some psychological management here.

What can you – as a family – do to give them a life of dignified comfort? Here are just a few out of the many things that you can do:

  • Talk to them gently, patiently, respectfully. If you are talking about them in their presence, say, “Mom is not feeling too good, we need to see her doctor,” instead of “She’s not feeling too good so we need to take her to the doctor.”
  • Greet them cheerfully whenever you see them. Introduce yourself if they fail to recognise you.
  • Place a large wall clock in the room. Tell them what day and time it is.
  • To reduce the risk of trips and falls, don’t clutter the room.
  • Keep the room well-ventilated, but dimly lit. Too much light in the room can aggravate their anxiety.
  • Keep your conversations short and simple. Avoid lengthy sentences that may agitate them. Speak slowly, using simple words.
  • Be patient when they repeat certain phrases or ask the same questions again and again.
  • Engage them in easy, manageable activities that they can enjoy.
  • Do not, at any cost, blame them for being ‘lazy’, ‘dramatic’, or ‘uncaring’. It’s not their choice. Remain calm if you tend to get frustrated.
  • Be attentive to their body language.
  • Don’t stand too close to them while talking. It may intimidate them.
  • Include the person in conversations instead of speaking on their behalf or completing sentences for them.
  • Listen to the person. Give them plenty of time, pay attention to their feelings.
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Artwork: Safa Younis

One of the gravest mistakes that you can make, however, is self-neglect. It’s important to acknowledge your own needs, too, and look after your own health. You can not be expected to look after someone else when you yourself are not at your best. Eat well, keep yourself hydrated, have a strong support system that you can turn to when in need. Denying yourself help will not make you more responsible or the more loving one, it’s natural and only necessary.

Dementia is not easy to deal with; it’s painful, it’s cruel, it’s heartbreaking. There will be many tears of frustration, a few of helplessness, some out of fear. There will be more than a few sighs of exhaustion and quite a few breakdowns. You will begin to question everything – why is it happening to you, when will it all be okay, does God even exist? You might even look enviously at your friends enjoying fancy meals when each of your own are caught in a hurry, haunted by thoughts of a questionable prognosis and the sad reality that your elderly loved one is no longer able to share their favourite meals with you. Your own anxiety will become a frequent visitor, and your life will have taken a path different from those around you. But it’s okay, it’s really going to be okay. You will – in your own capacity, at your own speed – grow; you will learn to master the art of patience, you will learn new skills as you care for your loved one, you will strengthen relationships. You will also feel your heartbreak – first all at once, then over and over again at each missed reflex and each reminder of where this could lead to – before you feel it soften into a much kinder, more compassionate, more emphatic one that will have learnt to call out to its Lord as a form of self-reliance. And it’s very advisable to reach out to a professional or to support groups to deal with your own caring mechanism.

So as you and your loved one gracefully transition from fighters into survivors, remember that the crux of human life lies in its dignity, in love, in kindness. Sometimes, medicines and doctors are not enough.

The sun was created to set but the morning is also a beautiful reality.

 

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Artwork: Safa Younis
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your eyes are even smaller, yet they behold the world

A day before our ophthalmology exam, one of my friends shared with our clinical group a snap of Conrad Fischer from the Kaplan lecture series, relating a well-received saying by “our friend, Rumi” to explain how the cornea in our eye is home to a thousand layers of cells:

‘My heart is so small
it’s almost invisible.
How can You place
such big sorrows in it?
“Look,” He answered,
“your eyes are even smaller,
yet they behold the world.’

The ophthalmology rotation is notorious here as one of the driest, and hence, difficult ones. Add to it the unfortunate fact that I was too busy for university even, this rotation was easily one of the most challenging ones, catalysing a kind of growth that I had never anticipated.

The cornea, the lens, the iris, the optic nerve. Cataracts, glaucoma, conjunctivitis, macular degeneration.

As the rotation thankfully ended, I realised that myopia is not merely short-sightedness of the eye. Often enough, we fail to recognise what really is important to the eternal soul and the mortal bodies – myopia of the heart, maybe? To be able to see – in this day and age – that the honour and dignity of human lives lie in kindness, humility, compassion, forgiveness, love, and empathy, is one of the biggest blessings that you can enjoy. To even consider it to be a blessing is a blessing in itself. Just like the proteins in the lens accumulate to turn into the pathology of cataract – clouding your vision and making it ugly and blurry – our prejudices, our egos, and our insecurities scar the beauty of our happiness, leaving behind a tragic trail of lifelong regrets and struggling souls. Weighing the worth of happiness against the bias of religion, caste, creed, and social status is – sadly – How You Kill Love and Happiness.

Maybe one fine morning, we will wake up to a world of mortals where the beauty of the soul will be the joyous Phoenix.

 

Photo credits: Sabrina Merchant (https://www.instagram.com/sabsescape/)

She’sAnEqual

So that’s some of the people from my fourth year clinical group; us in our natural habitat, laughing away before a dermatology class, posing for future’s nostalgia, dreaming big, tired but ready to conquer the world. Doesn’t that make you smile fondly?

Now all of us – girls and boys – entered this field with vague ideas of sleepless nights and big, burly books that will bully us endlessly, and hopes of a life straight out of Dr. House. All of us – girls and boys – have been subjected to the same rules and regulations, have read the same textbooks, taken the same exams to get promoted to this level. There is, however, one thing that sets us girls apart – having to deal with stifling, infuriating sexism. You would think that a field like medicine that revolves around healing humanity, with the basic principles of providing quality healthcare regardless of race, religion, gender, would be free of such plagues. Unfortunately, no.

Senior consultants will not think twice before urging our male counterparts to work ‘harder’ because they are the ‘eventual breadwinners’ of the family and us girls will eventually handle the ‘pots and pans’.

You will be shocked, hurt, and angry when instructors will pass similar derogatory remarks, adding that a woman’s place is in the home and a field as challenging as medicine was merely ‘impractical’ for them.

Your correct answers will easily be ignored before the consultant will move on to advice your male colleagues to study properly because “you have to do the real work”.

Do you know what the best part is, however? All of us – my very empowering girls – have never succumbed to the trap laid out by such chauvinists. Why should we? We belong to a nation that has the likes of Dr. Anila Darbar, Pakistan’s first female neurosurgeon; Dr. Rehana Mohammad Ali Shah, Pakistan’s first female orthopaedic surgeon; and Dr Attia Zafar, who bet all odds when she enrolled into the same medical school as her eldest son, the year he was graduating. These are all women of strength who have fearlessly broken all glass ceilings. So why should we bow down to the forces of patriarchy and sacrifice our dreams and ambitions? Certainly not!

Thank you, @clearskindoc and @dr.pamelamehta for bringing together the women in medicine to speak up and support each other through your #shesanequal campaign on Instagram!

Let’s not give in to this, superwomen!

It’s a very shaky bridge.

So, what happens when you are training to be a doctor and a loved one falls sick – so sick that you fearfully begin to count their breaths on the beads threaded through the rosary – and you find it hard to draw the curtain between logical thinking and the overwhelming emotions that are breaking your heart?

I’m finding that out.

Cheyne-Stokes respiration defines more than an abnormal breathing pattern characterised by progressively deeper and faster breathing followed by a gradual decrease resulting in apnea (cessation of breathing). It’s actually the struggle to take in some damned oxygen that their ischaemic heart and brain is screaming for; their tears are wailing that they don’t want to die yet, their kids need them. It’s also you struggling to breathe – painfully – like them because it’s not fair that they suffer alone. But this patient doesn’t complain and you wonder if it really is ‘suffering’ for them.

Muscle atrophy is not just a down-regulation of protein synthesis pathways and an activation of protein degradation; its watching and feeling a strong human waste away to a bag of bones. You also see how osteomalacia is synonymous to fragility.

Vascular dementia becomes less of an ailment that can be managed by adequate doses of Risperidone and more of a heartbreak that challenges your patience, your courage, your fear of losing your person as they sit in front of you, smiling at you with an emptiness in their eyes that makes you look away.

It’s a very shaky bridge, I promise you. Held together by variants of grief and fear, it’s as strong as your ability to find beauty in this struggle. And you can find that if you look beyond the realm of your own existence, at the moonlight glowing over the little miracles dancing around us, begging you to not be a cold scientist treating a bunch of signs and symptoms, but to be a healer for the magical narratives of human lives.

yeh sab tumhara karam hai Aaqa, k baat abb tak bani hoee hai

Huddled conveniently between memes and celebrity pictures, your noisy Facebook newsfeed often carries ‘miracle stories’ that talk about how the zam-zam water cured someone, or some such similar thing. And you smile without as much of a thought and you move on because you can’t be bothered to research the ‘how‘ of the science that may have caused it. I was guilty of the same until a very recent personal experience reminded me of my own words: “It’s like the workings of a car – how you put in the key, start the ignition and the engine starts working, you pull the hand-break and the gear and turn the steering wheel and the car goes in motion. You’re doing these acts because that’s how this car is supposed to work, otherwise, it won’t move forward and you’ll be stuck in the same place”.

It was Saturday night. Kaplan opthalmology and I snuggled together by my ailing maternal grandmother’s bedside. With one eye on the image of the normal retina on the screen of the laptop, I kept glancing at the frail figure sleeping next to me, looking out for the number of breaths that she was adding to those of her children and grandchildren, with her own. Her medicine time was lapping by so we decided to disturb what seemed like her sweet slumber. But she refused to wake up; she had – in very simple words – fainted.

We monitored her vitals: no red flags at all. We contacted her doctor: “maintain her oxygen saturatuon and keep talking to her, reassure her”. Check.

As we did that, I – either out of desperation to see my favourite lady talking or out of an unwavering faith in the power of our unseen God – played Surah Rehman on my retiring phone. What followed was surreal enough to make our eyes hug tears of incredulity, and relief, and gratitude. Within minutes, her previously unresponsive eyes began to flutter. A few more grains of the hour-glass later, her previously stiff jaw loosened and her mouth began to move till she was loud enough for every person in the room to hear.

“She’s saying something!”

“She is. She’s saying ‘Fabiayyi alai rabbikuma tukaththibani’!“

Recent studies have strongly suggested that listening to the Holy Quran causes the release of the neurotransmitter (a chemical released by the nerve cells), dopamine, to send signals to other nerve cells. Dopamine has a significant role in reward-motivated behaviour, also leading to pain reduction and helping individuals recover from stroke or other injuries. It aids in the betterment of cognitive skills, improving endurance and symptoms of dementia. There have also been studies showing that listening to Quran recitation can generate alpha wave, and can be more helpful in relaxing a person as compared to resting and listening to slow and hard rock music.

And so that’s how the car works, that’s how we work!
Because “yeh sab tumhara karam hai Aaqa, ke baat ab tak bani hui hai!”
(O beloved Lord! All is Your grace that my affairs continue to prosper, that my affairs continue to advance!)

And that’s how much she loved her Lord – gentle whispers from His scripture had the very calming effect that her neurons were craving for.

Life – despite its fragility and hues of sadness – can be very beautiful if you choose to listen to the notes of love, (and miracles) and hope dancing within the songs promising you the Everlasting, courting your patience, bejewelling your strength.

I love the sunrise. Don’t you?

Photo Credits: Omama Batool

and there is much peace in this chaos here

My surgery and orthopaedic rotation ended two weeks ago; sadly, it was not a very enjoyable experience at the time, owing to, perhaps, the unfortunate fact that I was trying to juggle too much all at once.

What I did learn in time, however, was to accept the gnawing, glaring fact that one must not – or ever – wait for the hard times to pass to wait to laugh, because life – married faithfully to time – will otherwise unscrupulously leave you behind, trapped in the same old shell of you, a you that does not know of uncomfortable growth, and unchartered terrains, and the extraordinary surprise of discovering that you certainly can live without what you thought was your very own gravity.

I learnt that often stressful situations bring out the best in you, that the love of and for God is delightfully selfless, that unconditional gratitude will inspire you beyond the pretentiousness of the tangibility of this world; that wrapped up as a heartfelt prayer, you always have something to give to another mortal. And during these prolonged moments of self-discovery, I also learnt that a mother’s love is an enigma you can never solve, an antidote to all your aches, teaching you to walk down the magnificent isle of peace, away from the strangling emotion of hate.

And all of those lessons are pretty useful, you know? Because as my tachycardia races against the bradycardia of a loved one, as my blooming youth bows down to the frailty of old age, as my present self – inspired by a grandmother whose hands are forever looking for mine, whose life is dominated by remnants of her past and not a map for a tomorrow – hopes for a future dedicated to geriatric medicine, as I find myself being released from the shackles of emotional dependency, as I find myself growing – spiritually, emotionally – to the velocity of what I am meant to be, I find myself finally finding meaning in suffering, beauty in sorrow, gratitude in hardships, smiles in tears, forgiveness in hate, and most importantly, life in death.

So healing a broken spirit and giving me a heart transplant, surgery and allied led me to surrender my soul to where it truly belongs. And there is much peace in this chaos here.

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Why I can’t be a gynaecologist

A deep well can hide within itself a lot of secrets, can’t it? The deeper you go, the darker it gets and once you’re at the bottom of the well, climbing up can be difficult.

Women – yes, you read that right – have hearts like that. Your mother, your grandmother, her mother, and her grandmother – house homes within their souls, burying the sorrows of unshared secrets with a selfless devotion that makes them the gentle sky over ungrateful relationships.

My gynaecology rotation for the fourth year has ended and if there’s one thing that I can confidently state is this: I can’t be a gynaecologist simply because watching all these women silently suffer – either out of choice or because of the monstrous patriarchy – and neglect themselves is beyond the realm of my patience.

“Koi baat nahin. Har aurat k saath hota hai.”
“It’s alright! Happens to all women at some point!”

“Aurat ho! Bardaasht karna seekho!”
“You’re a woman. Learn to tolerate the pain!”

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Photo credits: https://www.instagram.com/shehrozkhan_/

Remarks like these are the sad, sad language of communication when it comes to women and their health issues. The worst part is that majority of the women here do nothing to take their health seriously until it’s just too late; their pain goes unacknowledged, and in the few cases where they do make it to the doctor’s clinic, they need ‘permission’ from their husbands or fathers or brothers or sons before they can make decisions regarding their own health. Follow-up and compliance with medication is something you don’t see very often in a society like ours.
So it’s this very sad state of affairs that the gynaecologists of our nation have to witness and fight every day. To see your own womenfolk lose themselves to this dirty tide every second is something that at least I can not find the courage or patience to do.

There’s a fine line between being patient and between tolerating a physical pain that is making your everyday chores a burden.
The society – and it’s women themselves passing on this archaic ideology that wrongly glorifies the concept of silent suffering – reinforces the importance of how women must take care of their beauty, but they aren’t taught how to respect themselves, how to prioritise themselves – their physical, mental, emotional health. And that’s when it hits you – the most important, the most nurturing ones amongst our population are also the most neglected. That’s not just depressing, it’s infuriating, it’s unfair, it’s unkind. What is very, very easily forgotten is the fact that only when a woman herself is physically, mentally, emotionally healthy can she be the caretaker of all those leaning on her. Most importantly, it’s the kindest form of self-respect that she owes to herself.

While chasing the soft clouds, the reflection of womanhood is lost, is blurred. And the blue of the sky racing behind these soft clouds is mirroring the speed of our lives. The heart and the soul have forgotten to caress the softness of this wool.

holding no scalpel

Before starting clinical years, I often found myself caught between the age-old dilemma of eventually having to choose between clinicals and the academia. Fast forward to the fourth year of medical school – the real doctor roles – and I realised with a tinge of surprise and joy that I actually do enjoy the patient interaction. The miraculous way in which my narrative intertwines with that of a stranger’s and how much I learn about life, about myself, about all things mystical, and of course, about the very vastness of medicine itself, is a bit more than magic itself, no?

A recent encounter with an adorable young mother taught me the importance of empathy and compassion like none other.

A young woman awaiting her second C-section, *Saba was a vivid picture of anxiety. Her lips were constantly moving with the recitation of all the holy verses that she knew. So I  failed to get her out of my mind as I stood in the OT observing the removal of an ovarian cyst. Couldn’t help myself and I went up to her. We talked. She told me about her elder son and we became friends in that magical moment of one Eve feeling the emotions of another. I remember how her hands slowly warmed up as the C-section started. I wasn’t the doctor here, no, not at all! I was a student standing by her side, whispering to her verses of calm and peace, and watching the joy and relief spread over her milky face as I told her that the baby was out and aye, its a girl! Her big eyes twinkled with pure, unconditional love as I showed her a picture of her baby! And in that hour – where I held no scalpel – I was overwhelmed by what this mother and her daughter did for me. It wasn’t the first time that I saw a baby arrive into our rather cold world, but it was the first time I felt myself playing a small, small part in a stranger’s narrative. What did I gain out of it, you say? I saw my frustrations melt away into a gentle reminder of how beautiful, how painfully short life is to spend it brooding over that which is not in my hands. I saw my worries sail away as the gentle breeze of peace and hope hit my heart. I heard the turbulence of my soul settle down into something so deep and tranquil, that I was proud – more than ever – of being the reflection of Eve that I am today. I felt my strength multiply into infinity as I realised what blessings empathy, compassion, and gentleness are. And all of that propelled me to let go of my fears and embrace the fragility, the vulnerability, the truth that life, and destiny, and qadr has to offer.

So when you’re looking at the light blue sky above you, drowning in the depth of the million eternities around you, do you ever wonder why and how your chronology is what it is?

*Name has been changed for reasons of privacy.

 

 

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The picture has been taken with consent.

 

What internal medicine taught me

Internal medicine is supposed to be an intense rotation; it’s a little — neigh, a big chunk — of everything. Some gastrology, some pulmonology, some neurology. As students, when you are keenly learning how to perform various physical examinations on their patients and are keeping an eye out for findings leading to a correct diagnosis, you realise — again — what a miracle life really is, what a miracle our imperfect bodies are. From palpable livers that point towards hepatomegaly — a term used to describe an enlarged liver — to negative reflexes that make you think of neurological lesions. Add these up and you can not but help think of the million other ways a physical mishap could have wrecked your life. Does a realisation of gratitude hit you then? In another episode of an existential crisis, you also conclude that life is pretty funny, and pretty crazy, because amongst all the emotional turmoil that you ride through, behind all the sleepless nights spent tossing and turning in bed with a deep sense of loss giving you some good ol’ chest pain, there definitely is some grand Plan running your machinery – a Plan so complex and so perfect that a feeble mortal like you can not comprehend even though you’ve given the next couple of generations some incredible physics theories and mathematics formulae. What an amazing terabyte of intelligence and intellect we have, isn’t it?

 

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Ziauddin University Hospital, KDLB

 

 

The history of pain

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Photo credits: https://www.instagram.com/ax2mir/

Taking histories, writing them down, presenting them to your consultant — quite a tedious task as seen by us future doctors. But it’s so much more than that, isn’t it? Your narrative collides with that of the patients’ — like two meteoroids falling together, their paths colliding for a nanosecond in the eternity of time itself.

You’re taking a history of pain – any kind; abdominal, arm, any part of the body. You have a checklist in your mind that will help you reach a diagnosis and swiftly answer the consultant when he asks you to enumerate the differentials.

“Where do you have pain?”
“For how long have you had it?”
“Did the pain start suddenly or gradually?”
“Does it travel to any other region of your body? Yes? Where?”
“Tell me more about this pain. Does it feel like someone’s stabbing you? Or it’s a kind of heaviness in this area? Or it’s throbbing?”
“Does it get worse when you move about? Is it relieved by taking meds?”
“On a scale of 1 to 10, how bad is it?”
“Does the pain come with anything else? Any nausea or vomiting?”
And a couple of other questions like these.

As a future doctor learning the basics, every time I see these patients, I wonder if aching hearts ought to be healed this way, too?

“My heart and soul are aching, doc”.
“Umm, I’ve had it for a while now. Ever since my son died”.
“It started suddenly. Like a strong current rising within my chest. Like something stopping me from breathing”.
“Yes, it travels all the way into the depths of my soul and then down to my legs. I feel very weak then. Like I can’t stand on my feet, you know?”
“It’s all of that, doc. It’s throbbing sometimes. And sometimes it feels like a heavyweight is placed on my chest”.
“Yeah, it does get worse. When I walk out of my room and I see his baby clothes lying in the laundry because nobody has the courage to pick them up, or his toys peeking at me from behind undusted furniture”.
“I came to you for the meds, doc! Make this pain go away!”
“1 to 10? I don’t know. Sometimes it’s 3, sometimes it’s 8. And sometimes, it’s 11. I don’t know”.
“Yeah, it comes with loneliness.”

So many pieces all at once,

in the blink of an eye,

in half a breath,

in a fraction of a second –

a little hole here, a bigger one there

because this is magnificent beauty; this wound

where the light enters you.