It was early morning and as usual Naureen and her daughter were getting dressed. There were bags to pack and lunch boxes to store. It was time to go to school. Naureen’s husband, Abdul Waasey Khan, was at work.
And then there was a crash; Naureen had fainted. Terrified at seeing her falling mother, 11-year-old Gulmehek (Gul) rushed to the neighbours for help. Later that day, the family headed to the doctor’s. An MRI was done.
The diagnosis was shocking. “She diagnosed [it as] MSA, [Multiple System Atrophy, a neurodegenerative disorder], in which basically the brain cells die,” says Naureen.
The prognosis was worse. “She gave me three months to live,” says Naureen.
“My husband [and I] cried that day – shamelessly. We cried on the street, we cried in our daughter’s school. We cried everywhere.”
That was five years ago.
In the days that followed that frightening news, Naureen spoke to a friend who urged her to get a second opinion, which led to a slightly different find. The surgeon, in Canada, said: “It looks more like Parkinson’s to me.”
And so began a rollercoaster of diagnoses and emotions for the then 46-year-old.
My husband [and I] cried that day – shamelessly. We cried on the street, we cried in our daughter’s school. We cried everywhere.
At first there was a lack of comprehension. “My hands stopped working; I couldn’t even open a bottle, I couldn’t chop vegetables, I couldn’t dress up. My daughter, before going to school, had to wake up early because she had to dress me up and then she used to dress her[self] up,” recalls Naureen.
There were buckets-full of sympathy, with people bemoaning her fate. It sapped her of strength. “Sympathy is going to kill you,” cautions the mother of one.
It only got worse. Research funded by the Michael J. Fox Foundation for Parkinson’s Research found that depression and anxiety are common clauses of the disease; it takes a toll on a person’s brain chemistry. “I was so miserable…To the extent that last year, my doctor in Canada told me that the only solution for me to live was to have a surgery in which they would plant some electrodes in my brain which will run through my body and they will give me a remote. Whenever the remote will be switched on, my body would be in action, otherwise my body would be a vegetable,” she says in a matter-of-fact voice.
A bright home
We are drinking freshly-squeezed orange juice in Naureen’s house in Dubai. It has a colourful façade. It’s made to look like a farm, says the smiling 50-year-old with salt-and-pepper hair. She’s in a pink skirt and top and has taken charge of refreshments for me and her three friends. Her husband, her “punching bag”, she calls him, is on hand. There is unflinching conversation about life and death, the dissemination of dark humour and the talk of kids and tennis. And there are smiles. “You know, there’s a doctor here in Dubai who refused to believe that I was a Parkinson’s patient, because the first thing that Parkinson’s affects is facial expressions,” says Naureen. “[They] often stop smiling. I force myself to smile.”
Naureen’s hands begin to twitch at one point in our conversation as do her legs. She is late for her pills – by 30 minutes. It’s reminded her of other awkward moments. She recalls the surprise she felt when people sitting with her in coffee shops recoiled at the shaking of the coffee cup she held in her hand. She makes a bemused expression recalling supermarket workers snickering and pointing at her.
She calls it a ‘lack of awareness about her condition’. And that’s why she wants to tell her story. Words can change everything. There was one sentence, she says, that changed her life. “I used to go to school to pick her [my daughter] up and used to stand in one corner. And one day the receptionist in her school, Emma, she asked me, I see you every day; you come and stand in that corner, why do you do that?’ And I said, ‘I’m so embarrassed of my condition’. She said, ‘Your condition is not your choice’. That one statement changed my whole outlook.”
“I am not ashamed.”
It is tough, she concedes, to go on. “I agree it takes immense courage to face the world. Even now, there are days when I wake up and I don’t want to go in front of people because the whole night I’ve spent shaking,” she says. But she feels self-pity will only drive you into an isolated corner – and it’s most important to fight against that.
You know, there’s a doctor here in Dubai who refused to believe that I was a Parkinson’s patient, because the first thing that Parkinson’s affects is facial expressions. [They] often stop smiling. I force myself to smile.
Community, Naureen says, over and over is the backbone that keeps her going. “I told everybody, don’t give me sympathy; make me laugh. They all wiped their tears. They just supported me blindly, treating me as if nothing is wrong with me and slowly I could gather the courage to stand up again. I needed help, but then with medication and with social support system I am what I am today,” she explains.
Her husband and daughter smile. But they admit it’s been challenging for them too. “Being a spouse of a Parkinson’s patient is not easy. Because the inherent [issue] that comes with this ailment is that everything is the fault of the spouse. And that was something none of the doctors here had spoken about,” says her husband of 21 years, Abdul.
Even with warnings from her Canadian doctor, however, the friction almost proved too much for the couple, who have known each other since their childhood days in Jaipur. “We have known each other for more than 35 years. We used to be best friends,” says Naureen. “Last year, our marriage was [on] the verge of breaking up. Counselling has helped my husband a lot and we have restored our relationship tremendously. And now I feel that his behaviour was because of my frustration out of my condition.”
Do it yourself
Baby steps have helped her- and in turn them. The words ‘forced myself’ are often repeated during our conversation. It’s a system that works for her. “Simple things, like wearing clothes. There was a time when my daughter used to dress me up, but then I thought to myself if at the age of 46 it was happening, what would happen when I am 56? So ok, it takes me 20 minutes to wear a top, but I do it.”
Then there are short walks. “In the evening me and my daughter go for a walk – when I start the walk it’s horrible, my legs shake, my hands shake so much that my shoulders start to pain – they are like rocks hanging from my shoulders, but the more I start walking the better it gets. And by the time we finish the circle, I’m actually walking normally.”
“I noticed in my Parkinson’s journey is that the more you exercise, the more you try to get active – I know it’s not easy – the more you push yourself to get physically active, the better you will get.”
She also explains rehabilitation for her vocal chords. “My speech is getting worse by the day, so these days I sing songs to myself just to keep my vocal chords active. Everybody knows their body best, think of what works best for you and keep active,” she says.
These moments are the wins that come amid the falls. Naureen speaks of things that recently happened, but these occurrences took place “months ago”. Because she is suffering from a bout of amnesia. In January this year, Naureen had a brain stroke; it’s made the past few months fuzzy; the episode is still a dark blot.
In a video Naureen shares with me, her daughter is explaining to her, for the ninth time, what happened that night. In the wee hours of the morning, Naureen awoke with a start to the dark house. She began to shake her husband and daughter awake. Her message to them: Get me to the hospital, something is wrong. When they got to the hospital, Naureen was lying on a bed, telling her child over and over not to be afraid – of anyone, of anything. She was telling her she was proud of her. She cussed for the first time in her life – at her husband. The clip has Gul playing nonchalantly, bouncing a ball off a wall as her parents and their friends listen on. There are giggles as parts are enacted – emotions run from hysterical laughter to genuine amusement.
Moments full of laughter are a recurring theme in this space – there are campfires and S’Mores, rides in canoes and even hot air balloon rides. [That last one was a group activity which Naureen and co organised for their neighbours a few months ago.] There are videos with candid shots filled with delighted squealing and many smiles.
It seems like there is an urgency to pack in as many happy moments as possible. In this vein, there are baking lessons and painting lessons for kids in the house, as there are jokes and conversations for the adults.
Hope begets hope
The second time I meet Naureen, it’s after a blood test to gauge if she has some sort of blood cancer that may account for the blank spaces in her recollections. Turns out it’s not; just some high cholesterol on the charts. And yet, the couple are discussing sending their daughter, Gul, away to boarding school – in Canada. This move is an eventuality, they explain, but they – Naureen in particular – is keen to fast-forward things. She doesn’t want her daughter to be grieving and have to move away from home; she wants to make sure she is independent. Abdul, on the other hand, is arguing for them staying together at least until Gul is ready to head to college. He shrugs off Naureen’s insistence, saying, if they move back to Canada – they all have Canadian passports - they’ll have to live apart. His job as an environmental specialist will probably keep him in a different province than them. [Currently, with a job in Ajman, he spends three days away from them; four days at home in Dubai.]
For Gul, these are arbitrary discussions. She’s focused on helping her mum. She’s focused on letting her know she’s happy. ‘’I cope by looking at my mom and seeing how hopeful she is and how she is such a fighter. I just think of her as my role model and when I think of her I think of myself in that position and I try to cope with it like that,’’ she tells me.
The next stage
One day, post this meeting, came a terse WhatsApp message, followed by a few others. Naureen finds herself, she believes, in the next stage of her disease. Her hands have been giving her trouble. She has receded from socialisation – which has been key to her coping with her condition – her doctor has given her an additional dose of Sinemmet, to help her nerves.
I cope by looking at my mom and seeing how hopeful she is and how she is such a fighter. I just think of her as my role model and when I think of her I think of myself in that position and I try to cope with it like that.
The last of her stream of messages, however, is one filled with hope – she is reopening channels of communication. But first, she’s forcing herself to take a little walk around the neighbourhood.
An overview of the day
A typical day in Naureen’s world begins at 5am with a wrestle to put on her clothes. Next comes a trip downstairs to her kitchen and the rolling out of a paratha and subzi (flat bread and vegetable) for her daughter’s lunchbox. This stems from a promise she made to herself when Gul was born. ‘’Once she was born, we decided that even if we eat less, I will feed her with my hands rather than leaving her with a babysitter,’’ she says.
‘’Then I go to drop my daughter with my driver to school.’’
It’s a two-way process. You have to push yourself to be strong rather than expecting others to always make the effort. I decided it’s my life and only I’m responsible for it. Nobody else can help me unless I help myself.
Post this is nap time. After an hour’s sleep, ‘’I write my books. One [has] recipes. I started it because I thought I’d share it with my daughter when she grows up; then it became a passion.’’
The other is on religion.
‘’Every morning I make targets for myself – and those are not big targets. I have to put laundry into the machine with my own hands. I have to put those clothes out on the line with my own hands. And when you finish those tasks at hand you feel a sense of accomplishment.’’
‘’[One] target was to go for groceries myself. I don’t need help. If I open that bag and put apples in it and it takes me two minutes, Ok, who’s there to judge me? And people who are judging me are not worth it. I’m proud to say there are a lot of things that I do for myself now.’’
Next she drinks her coffee, meets friends – Alex, Karen, Aycin, Anna, Jack, Shiva, Jai, Svetlana, Nagashree, Harsha, Dillanthi - before heading off at 3.30pm to her daughter’s school. She takes Gul a packet with 10 grapes. And she takes another, similar packet for one of the little girls who lives down the street who is her daughter’s classmate.
‘’There’s a lady who lives here who lost her husband three years ago, to leukaemia, so she’s in a job, but she doesn’t have anyone to look after her kids,’’ she explains. These kids now spend their afternoons at Naureen’s, and have become her friends as well.
One of the girls, Isabelle, is full of praise for Naureen too. ‘’I love how she loves to make everyone happy,’’ she says.
Then comes a walk, followed by dinner at 7.30-8pm. And then it’s time for bed.
''We used to socialise a lot, but my husband and my daughter have so quietly adapted to everything,’’ explains Naureen. ‘’I used to love cooking. Now I cannot entertain that much. There are times when I tell my daughter and my husband, tomorrow we are watching that movie, tomorrow we are going’, last minute I say I can’t even get up. Both of them say, that’s ok, we can just watch a movie on TV.’’
The message is simple. ‘’It’s a two-way process. You have to push yourself to be strong rather than expecting others’’ to always make the effort. ‘’I decided it’s my life and only I’m responsible for it. Nobody else can help me unless I help myself.’’ And she’s keen to pass on the learning. Help yourself and you can do it too.