Sunday, July 08, 2018

Co-existence of Caregiving and Nourishing Oneself | PatientsEngage

Co-existence of Caregiving and Nourishing Oneself | PatientsEngage: Jyotsna Kumar talks about her caregiving roles - as a mother of daughter with Cerebral Palsy and as a daughter. With a timely reminder on the importance to look after oneself to avoid burnout and also to increase the quality of caregiving.

Monday, June 25, 2018

Motherhood-Living with and mothering with a disabilty

A guest post by me which opened up a whole  new world to  me:)

An article of mine: Patients engage

Allowing myself to read through these questions as they appear in this article helped me to view it from a medical perspective. The choices I made when I chose the easy option of painkillers,my simple lack of awareness perhaps;
How much our environment makes a difference and our responses to it!

Friday, January 19, 2018


In the tears,
deep within lies
 a sense of quiet
a deathly silence.
That eventually
allows for a gentle
call it a breakthrough 
if you wish.
However at that moment,
it is just my
in the tears.

Tears come from
 a deep space
least understood
when spoken.
To touch the space between the tears
and Divine grace.
To move into it here and now
is when the transition occurs
of holding myself in that Grace.
Not begrudging my tears 
Instead allowing them to flow
As raw tender grief.

In this moment, there is nothing for me to do.
In the tears.

Friday, November 17, 2017

Living life with a disability

It took me a while to get the title right because it’s a disability I am truly learning to live my life with each day. There are days when I forget my deafness, there are days when others don’t notice my deafness and there are those days when I long to regain my 100% hearing again.

 To listen to music crystal clear, to follow conversations in groups, to enjoy the nuances of the language like I once used to.There are those odd moments of loss. 

How much a disability affects  one’s life depends entirely on how much one allows it to. I don’t think it’s just about accepting it. It’s more about focussing on what one can do with this challenge. And there are always going to be moments of sheer frustration and helplessness. I don’t hear the alarm clock ring and oversleep, I miss the doorbells many a time and rely on my cat to look towards the door and then to me as an indicator. I am poor in balance. I miss birdsong and even thunder.There is the tinnitus and the eye fatigue due to constant lip reading. I could go on an on.

I use hearing aids which do not function the way spectacles do (I need to write this here because everyone I know has this misconception). I need to take care of them every day, clean them and dehumidify them and keep them protected, change their batteries and make frequent visits to my audiologist for fine tuning. I have no problem telling people I am profoundly deaf but I have a problem with people assuming they need to shout and speak because I am deaf. Loudness impairs the clarity even further,it amplifies sound adding to the cacophony. All I need is clarity.

On the optimistic side, I don’t hear a thing once I have taken my hearing aids off. I sleep through fireworks and arguments. I'm also blessed to live in the digital age so I use a digital hearing aid that connects to my phone and through Bluetooth, music streams in for clear hearing. Same applies for telephone calls.

 As I blog this,my hearing loss is at a 105 decibel loss already. Learning to live a fulfilled life with whatever hearing I have is my thought for the moment :-)

Just words

Like a million broken pieces put together,
some shards, some whole.
Some with a hint of a crack.
Where I am today is just that,scattered bits mended,
some fragile,
some resolute.
Fused in.
It's not about the life you are handed out,
it's what you do with it once it's yours.

Chaotic,frenzied yet calm,serene,
the balance comes when I don't look for it.
stop the struggling,
the resisting,
the pushing
the controlling,
and what is mine comes to me magically.
Like a door that's ajar waiting for me to enter
Gentle steps in
The world awaits me!

Tuesday, July 04, 2017

Spring cleaning

Spring cleaning

Wilted ‘rajnigandhas’

In murky brown.

Empty wine bottles

 Scattered around.

Overflowing closets

In every room.

Shoes in bags

Waiting to be worn.

Sheaf’s of notes

In different files.

Zen tangles waiting

In their gaps and lines.

Incomplete blog posts

Saved in drafts.

Mailboxes to be cleaned

Where do I start?

Clear this mess

Or wait another day?

Maybe, just maybe

Ill simply spring-clean

My stress away.

 *Decluttering is always on my mind. Each time I do it,it feels like a 'letting go'!

Friday, December 05, 2014


I glimpse a yearning in her eyes. A sense of unhurried grace to her step. I notice that ever so slight distance in her smile. Time to step back, I say to myself. She needs her space. I know she is fighting life and seeking her answers.

In her quest, I am comfortable at most times. But there are those brief moments when I know I have crossed a barrier and just then I lose her. To her little fortressed world, so ferociously guarded that I am at a loss. I know by gently excluding me, all she wishes for is to protect me from the dark space that speaks of her vulnerable self. She dislikes feeling fragile even with me.

These days she lives in a space far removed from the world she has always known. It is a world of white walls and sanitized rooms, of innumerable therapies whose names perplex us, of efficient and clinical oncologists and health care staff. A world where losing her hair has made her see how beautiful she is even without it. A world where she knows she does not have the gift of time.

Her eyes however continue to radiate hope, her face, a glow and there is an inner spark which I hope never dims.

She seeks guidance and reads books that speak to her about acceptance and mindfulness. She seeks a quickening in her spirit, to regain a sense of balance to living (it seems so far away now). She seeks the crisp air and the beauty of changing leaves. She seeks the familiar loop of the known where everything is just the way it was. She seeks laughter and music. Along with solitude and answers too.

I know all of this not because she tells me. My understanding of her is so deep that I know what she seeks. I know she is tired of being tired. I know she doesn’t want pain to be part of her passing. I know she hates to leave people but when her chapter ends she will go with the flow with sheer grace and courage.

And then she asks with a childlike curiosity laced with her unique wisdom, “Am I going to actually find what I want in this unfamiliar place with its lingering smell of fear? Is it here that I will unlock the mysteries of birth and death and everything in between”?

And I,

I tell her what comes to my mind,” Slay these demons of yours and make them your friend”. The oddest reply to a profound question perhaps but then how else does one answer this question?

I don’t wish to lose her and even when I do, until then I wish she treasures the life she leads and makes the most of it. This is what I seek for her. For her to embrace 
uncertainty and bravely slay her inner demons. For her to find the answers she seeks.

I sit by her side holding her hand silently just being with her grace and innocence.

 (A piece of fiction written for The Great Shakes writers group for a theme on Quest)


Home is where my heart is. And where family is. I believe it to be true. I also believe we can transform a house into a home wherever we may be. But what happens when we leave one home for another, leaving traces of ourselves behind? Does our energy linger on in those occupied spaces, like fragments scattered here and there?

Every home I have lived in is etched in my memory –there comes a sudden thought, a wisp of a remembrance, a twinge of nostalgia and then I need to pull myself back to reality. Each of my homes has allowed me to grow into the person I am today, allowed me a glimpse of the person I am within. Homes that came with the pain and pangs of adolescence and homes that helped me cope with life altering experiences through their sheer routine and rhythm.

Homes like the spacious sea-breeze blown bungalow I grew up in with its vast garden of trees, where I first learnt to cycle and was bitten by a gypsy moth caterpillar that infested our drumstick tree. Home then meant only one thing to me-“mom”. Her presence at home was something I took for granted, a soothing balm, her warmth, her sari pallu with its distinctive fragrance of the days cooking, the aroma of her hand-pound spices and chutneys lingers on. Her special Sunday lunches where I was allowed to taste what was cooking which mom called,”chakhna” (to taste) much before lunch time. Home to me spelt safety and security. It meant love that encompassed what I felt for all of my 13 cats and 1 dog. A home that allowed me the time and space to walk barefoot on the dew-soaked grass, to simply sit under a tree, to enjoy being hosed down along with the garden on those hot summer days. Of Friday pujas and fasts observed by my father, of sacred hymns chanted by him while he did the evening “aarti”.

Now when I look back, homes do come with associations.

Homes like our cozy tiny 750 sq. foot apartment on the 15th storey, where I moved in soon after I married and woke up to the sound of a mill siren each morning at 6 am. This home came with a sense of newness that pervaded my life - a new city, a new life and job and new beginnings. My small terrace garden housed pigeons instead of plants and the bay windows allowed me to simply sit and soak in the vast expanse of sky. A home where I made brand new friends, of daily evening walks, of pot lucks and sharing during festivals, of gaining wisdom from older mothers on my new mommy hood status. I remember being just so content with who I was and what I was doing. These friends have remained with me till today, be it through their well meaning advice that resounds in my inner world often or through social media. 
Time doesn’t seem to alter memories.

Since then I have lived in various homes - some serene, green and large, some overlooking the sea in its entirety (what a magnificent sight it can be during the monsoons). Homes so abundant in nature that it filled me with sheer joy and curiosity –the old sandalwood and jamun trees along with the mango and guava. Perhaps this home soothed my nerves in more ways than one. This was the home where I rescued a baby bulbul and nurtured back to life till she flew away. It soon became a home to wounded pigeons and even an eagle. 

And a home that allowed me the freedom to create my own vegetable and fruit garden and experience the joys of growing and consuming my own food. A home where we finally got our own pet kittens and for me after 18 years of not having had a pet it felt like a homecoming all over again.

Now I live in a home neither too big, nor too small- a home I call my own. It reflects me. The good and the not- so- good of me. There is the same hint of chaos in it as it is in me interspersed with a touch of calm. A space, my very own where I can simply sit, not do a thing and feel energized.

Home to me has always been the aroma of cooking, of the whirring of the exhaust, the hum of the washing machine, of the fragrance of the honey bush (kamini) wafting in and the sandalwood incense. The ghee stoked wick in my prayer room lamp as it dies down; its fragrance leaves me longing for more.

 How can I forget the innumerable dinner table conversations where everyone wants a word in till we invented our “talking spoon” (whoever wishes to speak /interrupt holds up their spoon)? The dining table becomes a centre point for everything-for homework and assignments for making to-do lists and for discussions. This is one tradition that has continued through all the years .Tables have changed with every home  but whatever be its size or shape it has taken the brunt of arguments and cold wars, of food stains and everything that dining tables stand testimony to.

The Friday puja/fast and hymn continues even today as my father now stays with me. Every time he recites the prayer I am taken back to my childhood home and the smell of camphor becomes a part of me.

How does one encapsulate what homes can mean? So intensely personal, individualistic yet each home is a step in the journey of bonding, of love and of memories. And I notice now as I grow older the bonding and love has gently and silently deepened. Without my knowledge.

Saturday, July 06, 2013


The thing about loneliness is that it catches you unawares.

I am beginning to feel it, in its essence and to be with it whenever it decides to visit.

When a child flies the nest, it is supposed to be a natural event that’s bound to occur at some point in time in ones life. However much I may know this to be true, I was unprepared when it actually happened.

The sheer sense of loss, of missing a quiet presence, the feeling of being overwhelmed emotionally that tears flow at the drop of a hat…I sum it up as an ‘Empty home-Heavy heart’ syndrome. I am told ‘give yourself time’, ‘distract yourself’; ‘it isn’t the end of the world’. Some friends look at me benignly; some don’t know what the fuss is all about.
But then I know, it’s not about what about others think. This is about me. The same measuring bar cannot apply to all mothers and daughters. I know that my daughter and I shared a unique relationship that words would do no justice to.

I wear something new and there is no one to ask, ‘How do I look’? I don’t get to hear, ‘Mamma, that’s not you, don’t wear this!” or “Mamma, I am hungry”…I miss all of that and more. I miss her gentle presence in our home. I miss the loud music blaring through the hallway disturbing my TV show. I miss the wet smelly towels she would leave lying around for me to pick up. I miss her attempts at making me relax and unwind. I miss our sharing on books, music, people and general observations that only she and I could do together. I miss our silences as well.

Her clean unoccupied bed lures me to mess it up. Her spotless bathroom dry, devoid of her books and odd lingerie makes me sadder than it should. Her cupboard, so neat and tidy now, the towels (blue and white) arranged awaiting her arrival some day soon...Her room is off bounds for me right now. I fear to step into it because I might just dissolve into tears and feel that ‘loneliness’ visit me again.

There are distractions, there is work to be done, and there is a life to live. I know that. But somehow I am lost in this ‘transition’ phase. I feel shaky yet stable. I feel the loneliness yet I feel blessed. I don’t want to be busy and distracted in the false hope that I will be okay. I want to allow myself to feel every bit of what I am feeling-the loss, the loneliness, the sadness, the moments –precious ones I have spent with Ananya as she grew up and see for myself how these 18 years have passed. And how in these 18 years I have changed as much as she has! This new stepping out of comfort zone is as much a challenging phase for her as it is for me and for us as a family.

There is an upside to this. I get more hugs from A, more ‘I love you Mamma’s’ from Diti. Syrah my cat never leaves my side as if sensing I need company. I am using Skype finally and can see and hear Ananya. I am making the effort to write and blog. I am also giving myself time to adjust to a home without her. I am learning to detach!

What gives me a kick is seeing her quiet confidence, her adaptability and flexibility and her courage in handling anything outside of her comfort zone.

There are going to be wistful moments, tear soaked meat curries (her favorite), silences, and moments of exasperation and imaginary conversations….

And in the last 2 weeks, I have begun to glimpse what lies ahead. It’s the norm. Letting go, however clich├ęd the term may sound is an integral part of ones life. Hold back and you are stuck. Let go and you are free.