Play a sport, form a community: The offline and online lives of para-athletes

 

To mark United Nations’ International Day for Persons with Disabilities, this blog post is about para-sports, and how the people who play these experience networking and community feelings both offline and online.  

Last month, between 7-11 Novmber, the Wheelchair Basketball Federation of India (WBFI)** hosted the country’s first ever international level tournament. It had teams from nine different countries compete and both women’s and men’s teams from India were runners-up in their respective events.  

While it wasn’t possible for me to be present in New Delhi for this historic tournament, I have in the past had opportunities to watch para-athletes play different sports – Wheelchair Basketball, as well as Blind Cricket. Watching para-athletes at their training sessions and talking to both players and coaches on the sidelines between breaks has been instructive. These conversations have given me an understanding of the immense transformative changes in the life of a PWD who takes up a para-sport.

This blog post captures what I’ve learnt so far.

The benefits of playing para-sports are:

1. Immediate access to a network of teammates who experience challenges similar to oneself. Life-long friendships are formed, sometimes even professional collaborative associations.

2. There are crucial life-skills of teamwork and strategy that are picked up when playing sports – which can then be used when finding employment and fending for one’s livelihood.

3. In a world largely designed to exclude the needs of PWDs, players of para-sports experience a boost in confidence and self-reliance when they travel to various cities, participate in tournaments in different places and experience new cultures.

When the Covid-19 pandemic hit, many of India’s para-sportspersons and their coaches turned to the internet to keep in touch with each other. Virtual training sessions and motivational webinars formed the crux of community interaction but the challenges of internet access faced by coaches and players who either organised or participated in such events has largely been undocumented by mainstream media.

In the absence of in-person training, there is great value in connecting with teammates virtually – whether it is participating together in a live-streamed training session, exchanging healthy recipes over a common social media platform or using an app to watch videos of past matches together in order to analyze mistakes & prepare strategy for future play. But these are exactly the sorts of experiences that are hard to have for a team of visually-impaired cricket players or a basketball team comprised of wheelchair users cooped up in their homes – more so because there is still a tendency to think of sport as a “hobby” rather than a transformative experience that teaches physical discipline develops strategic thinking skills and builds emotional resilience to take wins and losses in one’s stride. This means that device usage and a quiet space for a family member who is doing a mainstream job is prioritized over that for the para-athlete.

And while Covid-19 lockdowns in India have come to a halt, the reality of pre-pandemic problems of the para-sports community have come surging right back. In-person training facilities for para-sports are often hard to secure – for example, stadium flooring has to be conducive to wheelchairs and other assistive mobility devices; or acoustics may need to be conducive to hearing the rattle of the cricket ball used by players with vision difficulty; stadium rental for regular practice sessions is difficult to book due to a lack of funds and often rentals are by default prioritized for the training of non-para athletes whose teams generate more revenue and therefore have the capacity to pay.

So while para-sports teams and their managers continue to battle for sponsorships and equal access to on-ground training facilities, they also continue to miss out on the potential opportunities to harness skills and foster communities online. They are severely restricted to functioning in analogue while the broader sporting community (and indeed the rest of the world) routinely can and does harness the benefits of a digital life.

For instance, an internet that is designed to ignore the needs of PWDs means that para-sportspersons find it hard to:

1. Comfortably access information on stadium availability schedules
2. Be able to access & use virtual training modules with ease
3. Book tickets online or plan travel for tournaments
4. Keep up with sporting news
5. Participate in virtually held strategy discussion sessions with teammates

 
To navigate meaningful online experiences, a para-sportsperson often finds herself/himself dependent on friends or family to access the internet & is often at the mercy of the schedules of others.
 
So where do we go from here?

I made a quick list of ideas. It is by no means exhaustive. However if you’d like to know about the power of sports to transform the lives of PWDs, and want to learn more, here are some things you could try to get yourself started: 

- Keep in touch with para-sporting news (start by following some social media pages here and here)

- Reach out to para-sports organisations near you, ask to be in touch with some of the para-athletes

- Attend matches and tournaments – observation helps you be more in tune with the challenges faced by teams.

- If your finances allow, offer to contribute to make practice sessions and tournaments possible. 

- Begin thinking about offline and online environments and features that would make them more inclusive and welcoming spaces for everyone.

Let’s be more conscious about how we design our environments. As any sportsperson will tell you, when we play together as a team, we are always better for it.

** Disclosure: I donate funds to WBFI

This post is a part of “International Day of Disabled Persons” blog hop hosted by Sakshi Varma – Tripleamommy in collaboration with Bookosmia. #IDPD2022Bloghop. Access all posts of this bloghop at https://tripleamommy.com/2022/12/02/idpd2022-lets-make-this-world-a-more-inclusive-space

 

 

 

kissing pictures

Yesterday night after I came home, I kissed the photographs of both my parents. They were smiling so much at me out of their frames and I missed them and so really, what else could I do?

I remembered the days when they used to live in their flesh and not inside a photo frame.

I remembered those days and how whenever I used to return home from traveling, I used to be greeted by such warm hugs.

I remember hugging my mother, how soft she felt, her smell and how comforting it always was. I loved hugging my mother so much.

I remember hugging my dad; I remember how tight his hugs were and how much he spoke to me with his hugs. I especially remember how tight they had got after my mother died and I remembered how inadequate they made me feel because I simply didn’t think I had it in me to fill the emotional void he so obviously had.

And well now. This whole business of kissing them in photographs, the glass frame a barrier between me and their world.

It’s possibly the closest I can get to a welcome-back-home hug.

crazy movie nights

I went out for a movie by myself and I bought out the seat next to mine as well, just to ensure that they don’t sell it to a shady single man.

It wasn’t enough. I had a gang of single dudes sitting right behind me and a gang of single dudes sitting right in front of me. The movie was from the upcoming masala-women’s lib genre; the dudes made obscene comments and sniggered throughout.

They were clearly there to be entertained for the sex scenes and the sight of women drinking booze in clubwear. In my office western formals, I felt naked and debated exiting the movie hall during the interval. I dared myself to stay on. In the end, I compromised and didn’t step out to buy snacks during the break but sunk lower into my seat instead.

I wondered where all the single women in the city were and what they were doing with their time.

I did some mental math on the way home and figured that next time, I should be wiser and buy out not only the seats next to me but the row in front of me and the one behind me as well.

Oh yeah. How was the movie? Well. It was everything it advertised itself to be. Masala-women’s lib. Exactly like my evening.

navigating emotions and ventilators

I have wanted to write about this for so long now. But I kept putting it off. Why? Fear. And literally, emotional blackmail.

But then I finally found the courage.

So hear goes.

My father is now someone who needs lifetime ventilator support.

He is fully conscious – he can read a newspaper, solve crossword puzzles and has strong opinions on what he’d like for lunch.

He can have a basic conversation (two or three sentences at a time at very low volume – you have to stand right next to his mouth to hear him) but definitely no debates.

He can walk under heavily supervised conditions (uses a walker, can do only about 30 metres and no more, needs a person tailing him with a wheelchair in case he suddenly collapses or needs to sit).

He has lost almost all motor function and spends a lot of his time on his bed. He wears adult diapers. He needs to be bathed, fed and changed. You have to keep shifting his position on the bed to prevent him from getting bedsores.

He needs to be lifted up into a seated position. He needs to be lifted up into a standing position. If he’s standing, he can’t hold himself upright for more than a minute or two.

He can be placed on a wheelchair and taken out into the balcony along with his portable ventilator. He can’t hold himself in an upright seated position for too long. He tires out after about half an hour.

He is on dialysis. Once every six hours, thrice a day.

He is on 23 different kinds of medication.

Our home is set up like an ICU.

If you unplug his ventilator, he will fade away.

He will die. Of natural causes, make no mistake.

My father has had a career he loved and a wife who loved him. He has children who turned out to be smart, financially independent, worldly-wise and brave.

He is seventy years old. He wants to live. I don’t understand it.

Watching him breathe on his ventilator is expensive business.

2-3 lakh rupees a month, running costs. We spent five months in hospital before that, and that was 5 lakh rupees a month.

We don’t have the money. We have borrowed. We have fund raised. We have used our inheritances. We have used our savings. We will run out. 

Ventilators are enabling. This could go on for another year. Or another fourteen.

I am tired.

In the past decade while my dad lived on dialysis and my mother died of cancer, I feel like I have spent my youth caught in perpetual financial distress, emotional exhaustion and physical stagnation. Meanwhile, my peers traveled the world, moved countries, studied abroad, built their professional networks, met their mates, got married.

I paid bills, chased insurance guys, lived in and out of hospitals, administered dialysis, watched over chemotherapy sessions, scheduled appointments with doctors, tracked our medical supplies, set up more than one home ICU, tried cleaning up after my dead mother and never went on a holiday.

I can’t hear myself think.

I can’t hear myself think; my dad lies awake on his bed, thinking every day about wanting to live. I can’t hear myself think but I think he is selfish.

There. I admitted it.

I see him on his ventilator, his lungs a failure; his kidneys a failure; his seventy year old heart functioning at 50% and I wonder why we’re humoring him. I see him on his ventilator insisting that he wants to live and my conscience writhes because I want him dead. And yet I do every single thing in my power to help him with his desire to live. Because choosing bereavement is just too simple. Because we treat the admission of suffering of the care givers as unconscionable.

And because he fears death.

How is it even possible to love and loathe the same person so much?

I think the emotional blackmail of a ventilator is high order mindfuckery.

I attended a speed dating event in Chennai. This is how it went…

First up, a big shout out to LOL, the organisers, who bravely held a speed dating event in Chennai. I went purely for the novelty factor, because, let’s face it, when was the last time something like this happened in this city?

What was it like?


Well, here’s how it works. You register online and pay to attend. LOL had set up a payment link on bookmyshow.com    The charges were 999 for women and 2999 for men. This covers an evening where you get one beverage and a minimum of 5 meetings lasting 8 minutes each with potential dates.   

The event was held at a new-ish resto bar and I thought that was a good choice of venue. Relaxed, fun. 


What bothered me was the really horrible ratio of men – women.  There were 9 men and only 4 women. 2 of the women actually declared at the beginning of the event that they had just come to hang out and watch; they weren’t interested in participating.  But eventually  the organisers convinced them  to join in.  Out of the 9 men, 4 had attended a previous speed dating event with an equally dismal ratio of women and so were encouraged by LOL to come again for this one at a discounted rate.


Fact: One of the organisers called me a couple of hours ahead of the event to check if I could bring along a few more women friends. I said no one is going to turn up at such short notice. The organiser said I could bring as many women as I liked, FOR FREE. Ugh. Sigh. Sigh. Long sigh.

[ Aside: This is a short rant so skip this paragraph and move right to the next one if you don’t want to read a rant. Ok, if you’re still reading, let me take a side note to tell you how much this dismal ratio bothered me.  For one, I was one of the only 2 women who was actually there to PARTICIPATE, not just watch. Awkward, much? Second, I’m not really sure what message it sent out to all the men who showed up. I’m still grappling with the mystery that is the Indian hetrosexual male brain and the only thing I have managed to ascertain about it is that it automatically assumes the owner’s attractiveness and irresistibility towards women. I am genuinely sorry to report that I am yet to meet a man who is able to separate a woman who is simply testing the waters from a one who is genuinely interested. So yeah, I was worried and I won’t lie about it. I felt relieved when the other 2 women agreed to participate, bringing the total to 4, because, well, I guess I felt that that way I’m not exactly standing out in the men’s brains and won’t have to deal with one I’m not attracted to…]  

Anyway, moving right along.


There were 4 tables set up in a row, and each woman sat at one.  Every 8 minutes, a new man would take the seat across from her. At the end of 8 minutes, a buzzer would go off and the men had to move down the row to the next table. This went on until all the women had met all the men. Because of the skewed number of men, LOL set up a larger “guys only” table where men could just hang out and wait until their turn came for a speed date.


So, who are the people who turned up for speed dating? Well, I didn’t learn much about the women but let me tell you about the men I met.


Man number 1 worked with his father at their family-owned real estate business. He said he was tired of living AND working with dad and it was hard to meet girls his age. He said all his friends are already married and none of them have time to play with him anymore.  He was nervous, he said he’s never had a girlfriend in his life. He said that if he had a girlfriend, he would immediately have to convert her into a wife.  He said his family was putting a lot of pressure on him to get married but he didn’t feel confident about  “taking care” of a woman. I pointed out that it was probably the potential women who were developing cold feet about having to take care of him, but he missed my point. I ran out of conversation with him before the 8 minutes ended.
Verdict : DISLIKE

Man number 2 just seemed… I don’t know. Old? I think he was possibly the oldest person there. He was wearing a very cool shirt with fun coloured boats. Well done, Man 2, for trying to stand out. He had tried every single dating app out there and had given up on the world of online dating and so had surfaced at this speed dating event. He was polite. He said he’d like to meet me again and would show me all the dating apps on his phone.
Verdict: DISLIKE


Boy number 3 was cute, well dressed and 21 years old. He was really proud to be the youngest person at the event. (As an aside, I’m just wondering how this played out for him in the outside world.  Interview question: What’s your achievement? Boy 3: I was the youngest person at a speed dating event.)  He said the other women had all rejected him because he was too young. I said I’m not too hung up about age and then he got super happy. He was from Dehradun, had just finished studying dentistry and was interning at a hospital in the outskirts of the city. He said Chennai gave him culture shock. He was interesting to talk to and seemed genuinely passionate about fixing people’s teeth. He gave me free advice on mine.
Verdict: LIKE


 Man 4 was possibly my favorite. Well built, good smelling. Yay. He was a general surgeon and told me a funny story about how he got trapped inside the ICU once for 36 hours  at the hospital where he works. I felt bad when the 8 minute buzzer went off.
Verdict: LIKE

I had seen Boy 5  just when I entered the venue.  He had a squeaky clean complexion of a 12 year old and was sitting with his earnest, bespectacled face right at the door of the bar before the event started. The minute our speed date began, he announced that he was looking for a girlfriend. I said that’s a lot of pressure but told him about  Man 1, who was looking for a wife. Boy 5 was firm, he said girlfriend first and wife only if it developed into something where both he and the girl felt they wanted to spend their lives together. He then proceeded to deliver a short sermon on how Indian families are always pestering young people in their 20s to get married. I asked him to guess my age, he said 24. HAHAHAHAHAHA.
Verdict: DISLIKE


What can I say about Man 6 without making him sound like the disgusting piece of slime that he was? The date should have been over the minute I smelled his bad breath which floated right across the table to me. Or the date should have been over when I noticed his beverage of choice was orange juice (I had got myself a beer). Bravely, I soldiered on. He conspirationally told me that he was here to meet “high class girls”.
Me:  Who qualifies as a high class girl?
Him: A modern one

Me: Define “modern”
Him:  A girl who wears jeans and T-shirts
Me: ( no sound… should the date be over now?)
Him: In my family and my neighborhood, girls aren’t allowed to wear jeans.
Me: (Downing half the beer bottle in one go to keep my spirits up) … Oh… ok, what’s a “modern” boy, then?
Him: A boy with a crew cut who gels his hair

Me: Oh. Well I can see YOU definitely aren’t modern.

Him: I’m not allowed to style my hair. My father and uncle and brothers won’t allow it
Me: (no sound… wtf? This boy is at least in his late 20s and HIS DAD chooses his haircuts? )
Him:  (clearly he thinks my stunned silence must mean something good) Wow, you are the first girl I have met who thinks like me.
Me: (no sound… WHAT?)
Him: I would like to meet you again
Me:  Well if we both tick “Yes” on the score card, that can happen
Him: Please take down my number right now
Me: That’s against the speed dating rules
Him: I like you even more now.

Boy 7 was one of the smoothest talkers I’ve met in under 8 minutes. He was cock-eyed, sweaty from having played some extreme sport before coming for the event, intelligent at conversation and very relaxed. Like me, he was simply curious and looking to meet new people, not necessarily date. He liked long lunches, house parties, meaningless consumption of alcohol and long conversations. He suggested a few places in Chennai that I could go to if I wanted to listen to music and hang out with a group of friends. 
Verdict: LIKE


Boy 8 was well built and bald – my favourite combination -  and so  that immediately made me give him many, many plus points. But the minute he sat down he said to me, “You have a peculiar smile.”
Me: Uhhhh… thank you. I’m choosing to take that as a compliment
Him: Yes, it’s a compliment

Me : Thanks
Him: I have been watching your smile for a while now
Me:   (no sound….  This dude is just creepy)…. Ok. Why don’t you tell me a bit about yourself?
He had gone to engineering college and had a start-up company with his friend.  He was super nervous because he said he’s never been on a date before. He said nothing memorable and to be honest, though I had initially thought he was cute, his having admitted to watching me for a while just creeped me out. I ran out of conversation.
Verdict: DISLIKE

Boy 9 was determined to see how many languages I could speak. We did conversation in Tamil, Hindi and English before exhausting our options.  He  worked as a site inspector but I don’t remember what exactly he inspected. He said he doesn’t get a chance to meet women and so had come for speed dating. [ I don’t understand these men who say they don’t get to meet women. To me, such statements just reek of privilege because as a woman, I am CONSTANTLY trying to live my life around avoiding the unwanted advances of men. It is THE MAIN THING that controls my choices in a way no other factor does. Please check your privilege, dudes. If you behaved better, women would actually WANT to meet you. ]
Verdict: DISLIKE


 Ta-da!  Speed dating over. LOL sent all participants a Whatsapp link with the names of everyone so we  could click “yes” on the people we liked. If both you and your speed date have  “liked” each other, LOL will share contact numbers with you both and then it’s up to you to get in touch.

It was an interesting experience and since I travel a lot and since LOL organises these in different cities across India, I would definitely think about attending another speed dating event in a different city. Am I looking to meet my soulmate at one of these? Hell, no. Let’s be realistic – it takes much more than 8 minutes to build everlasting love. But if you’re just curious about meeting new people, without the burden of having to survive their company if you really hate them then this is a nice way to connect. Definitely recommend – it’s much more fun than a dating app because you can immediately decide whether or not you are interested in meeting the other person again and if your date is creepy, it will end in 8 minutes  J

the waiting game

This is possibly one of the most difficult things I will ever write in my life. But I think it’s important for me to put this piece out there because I’m convinced that I cannot be the only person in this world who feels this way. I want to be able to reach out to others who have these feelings and I want to be able to start an extremely difficult conversation.

This piece is for everyone who cares for a terminally ill family member and struggles with the emotional and mental load of it all. This piece is for anyone who has ever felt like they are waiting to move on with their life but can’t until their terminally ill loved one dies. This is for everyone who feels guilty for ever wishing death upon a loved one. This is for anyone who has felt like the emotional blackmail of family life is suffocating them. This is for anyone who has urgently felt the need to be mentally free and emotionally free one day. This is for those who fantasize about getting rid of owning people and getting rid of owning things and dying themselves. This is for those who are simply waiting.

Seven years ago, my dad was diagnosed with chronic renal failure stage four.  He is now on stage five  and battling for his life in the ICU.  It is unlikely he is going to make it. But we are waiting. Some days, I wait for a miracle. Some days, I wait for death. Some days, I feel like his death would be the miracle.

My mother was diagnosed with ovarian cancer four years ago. She died last year. I felt at peace on the day she died.

This feeling of peace is a hard emotion to negotiate and a harder one to explain to yourself. It is hard because feeling at peace is in direct contrast to the expectation of tears - the burden of tears that you think is the natural response to bereavement. It was a revelation to me when I finally learnt that grief is sometimes in the feeling of peace and not in the outpouring of tears.

I was at peace because she was at peace. I was at peace because someone I loved so much was finally free of the body that caused her so much pain. I was at peace because I could finally feel exhausted. Because when you are caring for a terminally ill patient who is undergoing slow suffering there are days and months and years where you simply don’t have the time to feel exhausted. You can’t. You won’t. And when you do, you will hate yourself for it.

And now a year later, I find myself waiting. I am waiting for my father to die. I was waiting even before we took my father to the hospital. I started waiting around the time he slipped into a maniacal cycle of bereavement and depression and bereavement and depression and bereavement and depression and bereavement and depression. I have been waiting because I simply don’t have the emotional energy to help him. I have been playing death games for seven years and I’m simply fed up. And that’s the naked truth. I have been waiting because familial love can be fierce and it prevents me from abandoning him. And that’s also the naked truth.

The two feelings co-exist. It is possible to love someone fiercely and still desperately want to be freed of their love. In a parent-child relationship, it is possible to love someone fiercely and naturally and still feel like you are obliged to love them. It is possible to experience these emotions together, at the same time and for a sustained period of time, over several days, over several months, over several years. It is possible to go crazy. It is possible to not.

friendship and silence

This time on New Year’s Eve, my father and I went out for lunch. Just the two of us. I can’t remember when was the last time we did this. Probably this time. Yeah. THAT long ago.


So anyway. I really did wonder what we would say to each other during lunch. Because, well, really, what is left to say? Dad does his bereavement through tears. I seem to be doing mine by cutting my hair to look like my mother. And the truth is, on most days, our bereavement feels out the silence, rolling along in the vacuum my mother has left behind.

There is so much silence that envelopes our time as a family now. To be honest, I don’t know if that’s a good or bad thing. But I can say one thing – for the first time in what has been possibly the roughest decade of our lives, the churning craziness seems to be standing still. There is so much mental noise and emotional noise that comes with financial strife. Terminal illnesses. Coma. Dialysis. Chemotherapy. Death.  Death makes things stand still. And so in the silence – and this is possibly the first time in a decade that we have had silence – we are actually just alone with our thoughts.


It’s new, this silence. I’ve not heard it before. I can’t recall having so much time to hear myself think. Because that’s what death vacuums do, they leave you with gaping holes of memories and emotions and wonder at what you could possibly be doing still left behind in this world.

So yes, I did wonder how we would survive an entire lunch in each other’s presence. My sister was travelling so this was really just me and dad going out together. And I have been spending a lot of days with dad since she was away and the only voices in our house have been the voices on the television.

Sigh.


But let me tell you about the lunch.

Well, dad chose a fancy restaurant.  We drank wine. His idea, not mine. But it felt cool to share a drink with my dad. We talked about his younger days. His days at the tennis club. His days back in college, when he and his friends used to organise disco nights with free entry for women. We fought over the bill, which was hysterical but I got it in the end.


I’m glad we went out. Conversation masks silence and a change of ambience can make you find a friend. 

Bangalore - the circle

I have thought so many times about this over the past 248 days that I can’t understand what  has driven me to write it down. It’s unlikely that I’m going to forget this train of thought because I’m so familiar with it.

My mother died leaving me as old as she was when she had me. She also died leaving me with her eyes,  her feet,  her voice, her laugh and the same sounds she made when she cried.

I wonder what she would have thought if she had known that by the time I was her age, she would be dead. That she would be one of the first among her friends to die. Or the fact that my grandfather will be 93 next year and his grief is something none of us can even begin to understand.

When she had me, it was a crazy day in Bangalore. My dad was away on a business trip. Our nieghbours  drove her to the hospital in the middle of the night. So much drama, in a time without cellphones.

We moved cities a few years after. I clearly remember the time we flew to Delhi. It is probably my first distinct memory of a plane ride, but I’ll probably write about that on a different day.

Today I think about how I’m back in Bangalore all over again. Living in the house my mother had so many plans for but never got to stay in. She would have liked it here. Whenever I’m here, I sleep on her bed. The bed she died on. Sigh.

It’s a tug-of-war of emotions, thinking about what she would and wouldn’t have liked. It’s a careful balance  between missing my mother and the equal number of times that I have appreciated that she’s finally free of the crazy trappings of human life.

And there are just so many things. Like the hangers I’ve hung, which still have her clothes on them. The way she had them before she died. I mean that literally. I simply took the hangers down from our cupboard in Delhi and  packed them without removing a thing and now they hang here in our cupboard in Bangalore.  Yes, our cupboard. My mother and I have been sharing since 2011 and I think that’s going to continue.  

Or the fact that I’m back in Bangalore after so many years, on my birthday, being the age that my mother was when I was born. We’re living in the house she hoped to watch me grow up in and we have moved the same year that she died.

And on my birthday I think what this day would have been like for my mother so many years ago, the day I was born. I think about all the emotions she would be feeling on this day. And then I think about today and now. And I feel thankful for words like bereavement. An overarching term that I have been liberally using for pretty much every uncategorized, deeply traumatic, deeply chaotic and yes, deeply tranquil emotion I have experienced since she died.

Because really, how do I hope to explain my thoughts otherwise? 

the undiscovered parts of bereavement that no one tells you about

I went through most of my life thinking I looked exactly like my grandmother.

Until my mother died and I cut my hair because I wanted change. Until my mother died and I discovered her pictures from when she was about my age. Until my mother died and I smiled so much at these old photos because she and I have the same haircut. Until my mother died and I started wearing her clothes. Until my mother died and so many of her friends told me I sound just like her. Until my sister said it to me herself. Until one day, I caught my reflection in the mirror and I did a double take because I thought I was my mother. 

And then I miss her and I don't miss her all at once. 

And she's staring right back at me and I'm smiling so much because she's right here, I sound like her, I look like her and we're the same age in the photographs of her I've collected. 

This year, I'm as old as she was when she had me. I've got so many pictures of us together in our first year together. And I've got pictures of her in the few years just before she had me and the few years just after she had me. All these are my favourite pictures now. I want to freeze myself, I want to look like how she looks in these photographs. The resemblance is near perfect, I really don't have to try at all.

I know with each day I'm growing older. Soon, I won't be the person in the pictures of her that I've surrounded myself with. I want to somehow freeze the clock on that. So then I take pictures of myself. I've taken more selfies in these 2 months than I ever have or ever will. Because I'm freezing myself to look like my mother. Because maybe when I'm dead, whoever discovers these pictures will drive themselves crazy trying to tell us apart. 

It's complicated. When my grandmother died, I really just wanted to live my days wrapped up in her sarees. I didn't and that's mostly because I have no idea how to drape a saree. 

With my mother - her clothes are more accessible to me, so is her jewelry. I'm in a phase of my life where I clearly bear an uncanny resemblance to her when she was my age. My hair looks like her hair, my eyes look like her eyes, my feet are her feet, my hands are her hands, my voice is her voice and it's so easy to get us confused. Except, well, when I'm wearing her clothes. She's obviously given away the clothes she had in her twenties and thirties. What we have left are her clothes from the later stages in her life. They are the clothes she owned as a middle aged woman in her forties and fifties. And I'm wearing them now. Young body. Old person's clothes. 

There are days when I'm confusing myself so much with this crazy traipsing backwards and forwards through time.

And then there are days when I feel oddly satisfied about being her living resemblance. 

 

 

things I figured out when my mother died - how to organise a cremation

The first thing to do is to call up the crematory and book a slot. It really is as simple as that. We used the Lodhi Road Electric Crematorium.

The next thing to do is to order a refrigeration unit and a van / ambulance to transport the body to the crematorium grounds. If the death occurred at a hospital, you can choose to pay for mortuary services until it’s time for the cremation – but if you need to or want to bring the person home for anything more than an hour, then you do need to get this refrigeration unit organised because bodies tend to decompose steadily and the bio wastes can be harmful for those who are alive.

I found out that cremation grounds have good business links to refrigeration unit providers and hearse van drivers – and the simple phone call that you make to book your slot is a one-stop phone call where you can also ask for a refrigeration unit and make the hearse van bookings.

Remember to have a doctor check and declare the death BEFORE putting the body into the refrigeration unit. But also remember the  caveat - if it has been a violent death ( for example, a murder) or a crime scene – please DON’T disturb the evidence until it is feasible to do so.

The important thing to remember is that in India, the businesses around death – crematorium services, refrigeration units, ambulances, hearse vans, priests etc – more often than not, use cash as their ONLY acceptable method of payment. Ensure that you have enough cash to bear the costs. We made it a point to visit ATMs within the very first hour of my mother’s death. Sometimes friends and relatives can be incredibly generous in helping out with cash. I suggest accepting the money and settling accounts later, but of course, each to one’s own.

The refrigeration unit will arrive at your house within a couple of hours of your phone call – and if the doctor has already declared death, then I recommend moving the body into the box immediately. Keep in mind that the longer you wait, the heavier the body becomes and the more manpower you will need to help you out.

Unplug the refrigeration unit roughly an hour before you expect your hearse van to arrive. Depending on your beliefs, you can use this hour to bathe and dress the body for the final goodbye. Even if you aren’t planning to bathe and/or dress the person, unplugging the refrigeration is useful because it brings the body temperature down to a comfortable level for the hearse van staff to move / handle.

The thing I realized is that news of death spreads really fast. I remember that all it took was a few phone calls to some relatives and friends, to let them know when the cremation would be. Then my sister and I wrote a facebook post and put it up on my mother’s wall.

We had a priest come over to our house and recite some prayers with a few close friends and family before we took my mother in the hearse van. At the cremation grounds, more friends and relatives just tend to show up.


Again, many side businesses mushroom right next to the cremation grounds. We found the flower shop particularly useful. One of our friends had the foresight to generously buy enough flowers for everyone who had come to see my mother off. This was a way to spend a few moments with her by standing beside her and laying flowers across her body. And then the priest said a few more prayers and then we had the cremation. 

And so, yeah. That’s pretty much how it’s done. Abrupt ending, I know, but death is like that. 

things I figured out when my mother died – how to get paperwork organised if the death occurred at home

While you and your family/friends may be able to easily TELL that your loved one is dead, remember that we live in a world highly affected by documentitis and it is therefore prudent to organise a document declaring death.

I recommend calling a doctor as soon as possible – try to do this within the first 15 minutes. Request him/her to come over to your house along with their letterhead and seal to write out a statement of death.

I say first 15 minutes because bodies tend to decompose pretty steadily and you may want to begin preserving your loved one’s body in a refrigeration unit as soon as possible. I also say first 15 minutes because when you realise a person is dead, emotions run high and /or a complete numb shock may take over and you just sometimes need a few minutes to grieve.

When the doctor arrives, he/she will need to check the person before pronouncing them as dead. Once the person is declared dead, the doctor will proceed to write out a statement on the letterhead. You may be required to supply details such as name of the dead person, their date of birth, name of parents and/or spouse, house address,  approximate time of death and nature of illness (if any). You may not necessarily know all these details - that's fine, just do your best to give as much correct information as possible.

In India, this statement of death given by the doctor is one of the things you will be required to submit when applying for a formal death certificate, which is issued by municipal authorities. Note that if your loved one passes away in a hospital, the hospital will issue a death summary that you should submit.   I will write a separate post explaining the procedure for obtaining a formal death certificate.
I hope this has helped you. I would be happy to edit and update this post - let me know in the comments section if I have missed out any crucial information. 

surreal

The day my mother died, there was a moment in which she was lying on her bed, connected to the ventilator and my dad and I were with her. My dad was undergoing dialysis, I was administrating it for him. It was just the three of us in the bedroom. Like it used to be, several years ago.

The same three people.

So much change.

It felt surreal.

socks

A few weeks before my mother died, I lent her a pair of socks, which she wore until she went to the hospital for the very last time. I found them the other day and put them in the wash. I’m wearing them today and I feel like somehow the more I wear them, the less of her will remain inside them.

 

But I’m now greedy about these socks, I feel like they are the pair my mother and I share. I want to wear them and yet I don't. I don't want them to tear. But they're just socks, and they were a gift from a man who is now .... well.

***

Sigh. They're just socks. In all likelihood, one of them is going to disappear into the black hole of our washing machine. The end is predictable.  

Sometimes I wish emotional associations were just as straightforward.

expressions

I guess somewhere along the way life threw me so much, I ran out of words. 

stuff of life

We moved houses last week.

My mother put me in charge of sorting out my father's things. And I put myself in charge of making sure he moves with least stress.
Sigh. What can I say about my relationship with my dad?

I don't know if words will ever cover it.

But let me tell you about my dad's things - books, papers, books, clothes, books, electronic gadgets, books, visiting cards, books, sports equipment, books, phone bills, books, bank statements, books, credit card statements, books, share certificates, books, take away menus, books, keys, books, spare car parts, books, petrol bills, books, old boarding cards, books, music, books, books, books, books, books. 

Sigh. 

Sorting out my dad's things reminded me of the person he used to be. 

I want to write it out, because it is so easy to forget. So easy to forget the person Dad used to be. So easy to forget amidst the exhaustion of dialysis and chemotherapy and the new personalities we all seem to have developed over the past few years.

So let me tell you about my dad.

He used to be happy.
He used to travel all over the world. 
He was famous in his field of work. 
He liked to network. 
He enjoyed eating out and he enjoyed listening to music.
He used to play tennis. 
He used to go camping. 
He tried to change the world. 
He excelled. 
He liked to read. 
He read everything.

Let me tell you about my dad. He lives in a world of silence. I can't seem to reach out to him anymore. Either I can't or I am too afraid to try. Or I am exhausted. I know I feel exhausted. 

Chronic illnesses can kill your soul before they kill your body. 

It's painful to watch.

Watching a person crumble into silence is hard. Watching over and protecting their things, the things of their life that once used to be is like a prison of emotions. 

I threw so many of my dad's things away this time - I threw them away because I know I won't be able to after he is dead. 

And I threw them away because I know my mother and sister never will. I threw them away to protect them. I threw them away to protect myself. 





 

cancer and workplace policies

Each employee in my office gets 20 days of paid recreational leave a year. 

Each employee in my office also gets 10 days of paid sick leave a year. This can be claimed if employees can produce medical certificates that show that they themselves were sick or that they had to care for a sick person in their family. 

My workplace defines family as spouse and children. 

I told my workplace that I need leave to care for my mother who has cancer.  They told me to file it under recreational leave. It's not sick leave because, OBVIOUSLY my mother is not my family. 

Obviously, visiting the chemotherapy day care centre, endless chasing up with insurance guys, going for follow up tests and doctors appointments is pure recreation. 

I'm almost so jealous of how refreshed I'm going to feel after each such session.  

****************

My mother goes for chemotherapy roughly once a month. After each session, she needs about 10 days rest before she feels normal. 

My mother needs her job because it comes with a health insurance cover which we otherwise cannot afford.

My mother offered to work from home on her toughest days, usually the 10 days  immediately after each chemo cycle, because this is when the side effects of the medication really kick in, leaving the person exhausted. 

Her workplace said no. They said no because if they allow one person to work from home, apparently EVERYONE will want to start working from their homes on their sick days. 

Also, apparently, if you want to get paid, you need to physically be in the office. So, no salary for the 10 days of rest that she needs .... the 10 days when her mind needs distraction the most, to be able to fight of the depression that chemotherapy can bring and the very 10 days that she offered to do her work from home. 

*********

I'm wondering who these idiots are, who formulate workplace sick leave policies. It is safe to say that most people who do this kind of job DO in fact know a person who has had chemotherapy. I'm wondering how it is possible to be aware of how cancer works and STILL be okay with handing down these policies with a firm rap to their fellow colleagues. 

I'm wondering when it became normal to be desensitized.   

chemotherapy shrinks bodies

Last month, my mother cried all the way to the radiologist. 

When I hugged her, I felt how small she was, just like a child. 

I tried to calm her. 

It felt like the first day of school. 

the boy who controls phone covers

My flatmate, the Costume Designer, is in love with a boy who bought her a plastic phone cover with little pink and green cats drawn all over it. 

She loves the boy but hates the phone cover. 

She bought herself a sleek metallic white phone cover. 

She loves the sleek metallic white phone cover but she knows that the boy will hate her for using it. 

Every time she goes out to meet this boy she frantically changes phone covers so that her phone is ALWAYS wearing the pink and green cats on the days that she meets him. 

Her phone has two clothes. One for date night. One for every other night. 

I said - "What's the point of all this?"

She said - "He will fight with me if he sees me using this white metallic phone cover."

I said - "Why will he fight with you?"

She said - "He will not believe that I bought myself a phone cover. He will think it is a gift from another boy."

One day, in her enthusiasm to meet the boy who controls phone covers, she ran out of the house and FORGOT to give her phone the right clothes. 

They fought that day. She came home and they fought that night. Then at 2.30 AM she decided that she would drive all the way to Kancheepuram to meet him face to face and resolve the fight. 

So she got out of the house and drove her car. All the way from Chennai to Kancheepuram at 2.30AM. 

She made sure her phone sat in the passenger seat, wearing the pink and green knitted cats rather than the slinky white ballgown.

They met. They kissed. 

Because the boy who controls your phone covers is the one who deserves to be loved. 

life with Sebastian (part 2)

As Anand rightly pointed out, Sebastian, the 2 year old child who stays in my house, is much like a kitten. 

Let me tell you why. 

Sebastian purrs outside my bedroom door and scratches on it, wanting to be let in. 

If I don't answer, he pushes open the door anyway and peeps in with his tiny head. 

Then he kicks the door open and races in. 

If I have locked the door from inside then he scratches and cries until I let him in. 

When he is in my bedroom, I have no idea what is going to end up where. If I want him to leave, I have to scoop him up and he makes small kitten whiny noises and kicks around wildly. 

Because Sebastian is a human child and not a kitten, he thankfully doesn't have sharp claws. 

life with Sebastian

Sebastian is a 2 year old child who often comes to stay in my house.

Sebastian doesn's speak yet but he knows how to swipe and change pictures on a smartphone.

The whole world, according to Sebastian, is an edible object.

Thus every item that ever enters his line of vision immediately meets his mouth.

Of course, as we all know, the whole world is NOT edible. Most items are not. This is always a surprising discovery for Sebastian. Every time his mouth meets a non-edible object, he clutches it with his tiny hands and  throws it with all his might.

Sebastian is small but his hands are strong. Every thing that he throws lands a million miles away from its original position.

Two year olds can be so volcanic.

I wonder what are the scientific applications of this?