Meeting Jazmi
We met her in a cafe, not in Mumbai as you’d expect, but in Buenos Aires.
Our route to India this year took a turn south, all the way to Buenos Aires, a city we’ve long been wanting to explore. It’s not on any flight path to Mumbai, but a cheap ticket from Vancouver to Buenos Aires made the trip impossible to ignore. We usually travel for a month or so before we reach Mumbai, to see parts of the world we haven’t travelled to yet, and to gear up for the madness we’ll find once we arrive to take another stand in the unforgiving city.
It was the cafe’s red exterior, glowing under the streetlight on the corner, that charmed us to peek inside after a long wander through the dark streets looking for a place to settle in for dinner. We sat at one of the empty tables, and the only waitress working the small room approached us to welcome us and hand us menus. She noted our accents and she was curious to know where we were from. She wanted to rescue us from our unease with our limited Spanish vocabulary, and she wanted to practice speaking English. Her innate friendliness was very charming, and she took the time to talk at length with us while she served us our meal. We took our time eating so that we could continue the friendly conversation. When we were the only ones left in the restaurant, she had more time to linger at our table. She introduced herself as Jazmi, and we chatted about everything from our respective tastes in music, her favourite places in Argentina, and the best place for gelato in Buenos Aires. She asked us about Canada. Eventually, we inquired about her family. “It’s just me and my mother”, she said.
Her forty-five year old mother, Romena, is in a government funded nursing home located in the farthest reaches of the sprawling city, far from where Jazmi lives. She’s in the late stages of Huntington’s Disease, diagnosed when she was in her early thirties, and Jazmi was just eleven years old. They struggled with living situations through the years with no help from her mother’s family. Her father left the family when Jazmi was a toddler. Her mother’s sister is capable of helping her and her mother, but has stayed away, emotionally exhausted from caring for her mother for years, who also had the disease. Jazmi and her mother lived with her grandfather for some time, until that situation became unbearable for everyone.
As we continued to talk through the end of her long shift, we asked if the government subsidized nursing home was a good, kind place for her mother. Did they provide what she needed? Jazmi replied that the staff were very good to her mother, and to her, when she visits once a week. She said that the disease has taken away Romena’s ability to stand, walk, talk, eat, and swallow, and that day by day her memory is fading into nothing. The nursing home doesn’t have the funds to purchase a wheelchair for her to use because she requires a specialized chair, so she lies in her bed most of the day unless someone comes to sit her up, or move her to an area for social contact. Jazmi told us that she is saving her money for the wheelchair that she hopes will give her mother back some quality of life before the disease takes everything away.
As we digested what Jazmi had told us about her life, she came back to our table and insisted that I try a dessert, a house-made flan with a decadent side of dulce de leche. When she disappeared into the kitchen to get the dessert, we had time to talk about what we could do to help them. The only thing to do, we’d decided, was to buy the wheelchair. She returned to our table and placed my dessert in front of me, smiled, and waited for me to take a bite. It was as good as she said it would be. After I had eaten a few spoonfuls, and we talked about what makes the dessert so good, we blurted out, “We can help you with the wheelchair.”
“How”?, she squeaked out while taking a slight step back, bewildered by what we were telling her. We told her about what we do in India - how people donate funds so that we can help her, just as we help families in Mumbai who are struggling with their day to day grim realities. She just stared at us. We asked her to Google what kind of wheelchair she needed for Romena. She’d long ago chosen the wheelchair that she wanted to buy and brought the photo of the wheelchair up on her phone. We asked her how long it would take her to save enough money to buy the chair. Her answer was that it would take a couple of years, maybe less time because she was taking more shifts, with one day off a week to visit her mother. We looked at each other, and then at Jazmi, and the only right thing to say was that DWP would purchase the wheelchair for her.
We arranged to meet her on her next day off at a cafe close to where we were staying. The three of us sat on a sunny patio to arrange what we thought would be an easy online transaction to purchase the chair. That plan was foiled completely when our foreign credit card wasn’t accepted by the company. We were still hopeful that somehow we could manage to make the purchase, allowing that we didn’t have a flight out of Buenos Aires yet, which gave us as much time as we’d need, so we forged ahead. Over the next week, Jazmi and I looked online for other medical supply shops that sold similar brands of wheelchairs, and then she would call them to ask if they would take foreign credit cards, without any luck. At the same time, while Jazmi worked her shifts at the cafe, we searched the city for Western Union branches that would allow a large transfer/acceptance of money, in case the credit card fiasco continued. All things to do with cash and credit, we discovered, are very difficult to manage in Argentina because of the daily fluctuation rate of the Argentine peso. Western Union branches rarely have enough money in their vaults to dole out large amounts to one person. A few days later, Jazmi texted me to let us know that she’d found a shop near to where the nursing home was located that insisted they would take foreign credit cards, and that they would also deliver the wheelchair to Romena’s nursing home. We waited another few days for Jazmi’s day off from work and set out in an Uber to meet her on a street corner in her neighbourhood. We discovered quickly that Buenos Aires is massive, splaying outward in all directions from the central core where we started, so this was going to be a long trip to the medical supply shop. It took the better part of two hours in traffic, our Uber taking us from the beautiful central area of the city through neighbourhoods where it was obvious that families struggle everyday to survive. At the medical supply shop we were greeted warmly by the owner who was excited to direct us to the box containing the wheelchair. He insisted to show us, using a sample wheelchair, how the chair worked for different sitting positions. Once he was satisfied that we understood the machinations of the wheelchair, he directed us to the payment counter. The anxiety of whether our credit card would work was palpable between the three of us. The clerk took our credit card and ran it through the machine, as we all held our collective breaths. When the credit card machine spit out the receipt, we hugged, stifled a tear or two, and might have high-fived each other. An older man appeared and was introduced to us as our delivery driver, and we were told he would unbox and assemble the wheelchair once we were at the nursing home. This moment was the culmination of a promise by us to secure a wheelchair, and an emotional and financial relief for Jazmi.
We called for another Uber to take the three of us to the nursing home. We would finally get to meet Romena. The nursing home is a well kept, one storey, white building behind a wall with a locked gate. While the delivery driver and Todd unboxed and pieced together the chair just outside the gate, Jazmi ran to get her mother. After some time, Romena, held up by a grinning Jazmi and a nurse, hobbled slowly toward us. She’s a young, beautiful woman, an older version of her daughter. She greeted us with a slow smile, her large eyes unblinking, but conveying immense pleasure and excitement at the sight of her daughter. Jazmi wanted to take her mother out to a cafe to celebrate, and that’s what we did. It’s very difficult for Romena to move, yet Jazmi wanted nothing more than to give her mother a few hours out of the nursing home. Romena wanted to experience food that wasn’t blended into a liquid, as they are required to do for her at the nursing home. At the cafe, while Jazmi carefully fed her mother specks of food and gently wiped her mouth with the towel tucked into her blouse, she filled in the blanks about the years they had together before her mother received her diagnosis. Romena was a young, single mother who had to take her daughter to work with her. She’s non-verbal at this stage of her disease, so she nodded and smiled when Jazmi told stories about how the train conductor would hold the train for them as they ran down the platform, because he knew how important it was for Romena to get to her job on time, and how her birthday parties were not complete without a homemade cake that Romena loved to bake, and that she always served half the cake to her friends, and always saved the other half for Jazmi. The stories continued, with mother and daughter united in the celebration of their former life before Huntington’s Disease took their lives and shook them to the core, displaced their hopes, and darkened the room. Jazmi, a beautiful young woman with a gentle, strong, positive nature, has put her life on hold as she strains to keep some light in their lives. She has become the mother to her mother.
It had been a full day for all of us. Once Romena was settled back at the nursing home and we said our goodbyes to her with a gentle hug, Jazmi became reflective and happy, and relaxed enough to fall asleep in the front seat of the Uber. We were both lost in our own thoughts as we looked out the car window at Buenos Aires spread out in all directions, people going about their business, scrappy homes and businesses eventually replaced in the distance by high rises and luxury apartments and beautiful buildings with filigreed windows. We dropped Jazmi off at the apartment she shares with a friend and her dog, an edgy area recently finding itself on the tourist agenda for “off the beaten track” sights.
She told us that she knows that the window of time left for her mother to recognizer her is closing rapidly, and that she wants to give her mother all the love and attention that her mother gave to her before her mother’s world becomes dark. She’s confident that she’ll have time for her own life to blossom, she said. Huntington’s Disease is rare and the gene is inherited from one or both parents - both her grandmother and her mother have the gene for Huntington’s. About a year ago, Jazmi bravely paid for the expensive test to determine whether she carried the gene, knowing that there was a fifty percent chance that she could have it. She does not have the gene. This is where her hope resides, in the knowing that she will have the time to build a life, and that this disease won’t claim her as well.
We are so happy to have stumbled into the cafe where she worked that night, that we could deliver our promise to her because we receive donations, and that we got to know her and Romena. They are a part of our lives now. We text with her often, and we hope to find another cheap ticket to Buenos Aires sometime soon.
Here’s what we spent on Romena’s wheelchair:
Ortopedia Modelo (medical supply shop)
Address: Uruguay 267, Moron, Buenos Aires
Purchased: 1 wheelchair (Silla Postural Care Quip Adult Con Mesa)
Receipt:
Punto de Venta: 00001
Comp. Nro: 00000444
Date: November 27, 2024
CUIT: 30717874133
CAE # 74483710120271
Fecha de Vito. De CAE 07/12/2024
Ingresos Brutos: 901-30-71787413-3
Price of wheelchair: ARS 818,000 (CAD1099.39)
Deliver/assemble wheelchair: ARS 25,000 (CAD33.60)
Uber Rides:
4880/15030/3000/3000/21,020 - Total: ARS43,930 (CAD59.04)
Pick up Jazmi/ to shop to buy wheelchair/to Nursing Home/lunch/return Jazmin home/us to hotel
Lunch: ARS31,000 (CAD41.66) (treated Jazmi and Romena to a celebratory lunch)
Total: ARS917,930 (CAD1233.70)
Next blog post: what we’ve accomplished in Mumbai.
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Beautiful!
Moving story. Wonderful opportunity to see a need and meet it! Much love.