“In December 2020, my whole world came crashing down around me when I lost my ma to Covid”

In November 2020, Pooja Ganju Adlakha started writing this story which was meant to be about coping with the grief of losing her father, Major Virendra Ganju, in 2016 to Motor Neuron Disease. However, by the time the story could come out, she unexpectedly lost her mother to Covid. In this first-person account, she writes about how, with both her parents gone, she is experiencing a different kind of an empty nest syndrome

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I wrote this piece for my father in November 2020. The story was meant to be about how I was able to cope with the grief of losing him in October 2016, and how my mother was my biggest source of strength. But soon after I submitted the story for publishing, my whole world came crashing down around me.

I lost my mother, my precious, precious ma, to Covid-19 on December 26, 2020. It seemed unfair. I always thought my ma would be by my side forever. I don’t think I have the strength to deal with her sudden loss, that too in a pandemic year. A dagger is stuck in my heart forever.

They say an empty nest is when kids move out of parents’ home, but, with both my parents gone, I am experiencing a different kind of an empty nest. They will never be there to hold my hand and help me sail through. No one would shower me with unconditional love. I will miss the aroma of food cooked by my ma, and my pa’s infectious energy whenever I will enter my maternal home, that empty nest, from now on.

With both her parents gone, Pooja is experiencing a different kind of an empty nest syndrome

However difficult it may be for me to talk about this, I must still try for the sake of my ma who filled our lives with love and affection after pa left us. Now, looking back, I feel how difficult it must have been for her to live without him and not showing the slightest of pain to us, her three daughters. THAT for me is displaying pure strength for the sake of family.

This loss also made me realise we are never alone in grief. As painful as it is for me, it is equally heartbreaking for my sisters and much more for our children who doted on their nani. For now, we are numb. We are still coming to terms with the fact that we will not be able to hear her voice and see her every day. We are angry at God for taking her away from us. But we have to be sane for the sake of our children, like my ma was for our sake. I love you ma and you will always be alive inside me. Here goes my original story, the one I wrote for pa, before ma left me to be with him in heaven … 

I was expecting my second child when my father Major Virendra Ganju, a veteran in the Armed Forces, passed away. He had been battling Motor Neuron Disease and was completely bed-ridden in his last days. I particularly remember this moment when he asked me with hand gestures what I wanted … a girl or a boy. I said a girl. He called me closer and touched my belly and blessed me. And there I was, the very next month, on his tervi, giving birth to my daughter. There will always be this sadness that he was not able to see or hold my little girl, but I am glad that he had blessed her. To me, she is a piece of my papa.

Major Virendra Ganju battled Motor Neuron Disease for 23 long years

Papa … it’s a small little word but it signifies a valley of emotions, love, memories, and pride. My father has been, to this date, my hero, and I, being the youngest of his three daughters, was his most pampered one.

I have been finding ways to deal with the loss of my father for the past four years. As per the definition of grief, it is a response to loss, particularly to the loss of someone who has died. Well, in reality, grief is much more than a mere collection of words defining the immensely strong feeling of loss one feels when a beloved is gone forever.

People are often asked how they feel about the loss, how do they manage it, deal with it, or make themselves accustomed to the great void that gets created. Well, I am not sure if they actually ever get used to the void. They try to keep the memories alive to occasionally relive the moments that were once spent together, irrespective of the pain they bring along.

I can tell from my personal experience that things do get better with time, but, at times, you feel like rewinding the years all over again. The acceptance part was easier for me, as he had been defying Motor Neuron Disease (MND), a very complicated disease, for 23 long years. It was a miracle considering the doctors had given him just three years to live after he was diagnosed with MND. So, the additional years were a blessing, and it was in these years that we saw the real hero, the real soldier who had this immense will to live a happy life and none could fathom what he must have been going through.

Pooja with her parents

Though he was not active in the last few years, it was his real absence that hit us the most … all the talks that did not happen, the war stories I did not hear from him, the time that we could’ve spent together … they are just flashes, in retrospect. At times, I feel guilty, that I lived so close by, yet I could not spend every weekend with him. A valuable lesson learnt. We will always be busy, but let’s not forget to spend quality time with our loved ones. Do not wait for the right moment. It may never come.

I was in awe of my mother for being his pillar of strength. We did all that we could for him and have no regret that we could not find the right treatment for him. I personally did extensive research on MND, spoke on forums to realise how little progress has been made and, in India, how patients suffering from MND and their families had limited access to resources and support systems.

The last year that I had with him was the year when he was the most vulnerable. He was bedridden, could not speak, he was being fed through pipes, there were catheters and oximeters, and yet, whenever we would ask him about his health, he would always show a thumbs up. THAT was my papa.

So, to not see him running around fixing everything for us or throwing parties or to not hear him sing was a big blow and a realisation that a glorious chapter was about to end. He always called me his mighty son, and when it was time to lit the pyre, I was not allowed to see him as I was expecting my daughter. I did feel a bit of a rage, but my sisters lit it for the three of us, and I could not have been prouder.

Pooja’s mother with her kids

I feel it is these memories that make us strong and keep us going, and yet, there are moments. Tears are rolling down my cheeks as I am writing this. I want to be as strong as he was. I am getting there. My mother and sisters were my pillars of strength. The year after he passed away, my mother stayed with me. I felt relieved that I could not spend time with my parents while my father was alive, but I got to spend time with my mother.

Handling the loss, being strong for the sake of your other parent, is also a way of dealing with grief. There are some other coping mechanisms that come in handy. I try to keep him alive by doing things he loved the most … like singing, watching movies, throwing parties for kids, donating and distributing things to people randomly, impulsively. He was indeed a happy-go-lucky man, who would not worry about the future, something I still need to learn.

I make sure to celebrate his birthday, my parents’ marriage anniversary, and his death anniversary. We play music, order their favourite dishes, donate food to the needy and that, in a way, has really helped me have happy memories of him. I know I am a bit like him so, sometimes, I justify it by doing these things. And, at times, I randomly talk to him. That keeps us connected.

Pooja Ganju Adlakha’s account is a part of our series on ‘Stories of Loss and Healing’. Read Sunil Kumar’s story here. He lost his wife just four days before the 2020 lockdown and eight months after they got married.

(Disclaimer: The views, thoughts, and opinions expressed in the account above belong solely to the author, in this case, it being Pooja Ganju Adlakha and not that of The Good Story Project or its co-founders.)

“Hope keeps the ship sailing … a faint hope that I will meet my mother someday”

Darshana Shukul, a corporate communication professional, lost her mother soon after her baby brother was born. She was just five. She still remembers seeing her mother lying on the hospital bed, pale and lifeless, and the strange deafening silence between the two. In this first-person account, she talks about how, while growing up, she wrote stories, sought solace in God’s grace, and befriended books, weapons that helped her battle the painful emotions of losing her mother

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Life sometimes brings joy and sorrow wrapped in one gift parcel. Such experiences leave you speechless, numb, and empty. And, when such surprises are thrown at you in your childhood, you are left with no option but to accept the gift with a heavy heart and teary eyes.

I was all but five … naughty, demanding, and a brat … but everything changed soon after I was blessed with a baby brother. While my younger sibling arrived as a bundle of joy, the arms that wrapped him were that of my father. My mother chose to head to heaven instead of coming back home along with my brother.

The year was 1986. Memories of that day are still fresh in my mind even today. I remember jumping into one of the cars that was heading towards the hospital. When all the relatives got off from the car, I pretended to be a part of the crowd. And then I saw my mother lying on the hospital bed … pale and making every effort in the universe to hold on to life. Our eyes met. We looked at each other as if we were strangers and time stood still between us. I was too young to have a proper conversation and she was so exhausted that she could not say anything. But, in those silent moments, we communicated with each other without actually saying a word. In those silent moments, I promised her to be her Atta Girl! I promised her that her daughter will be a force to reckon with. In her faint smile, she knew her girl will hold on to life, a luxury she no longer had.

A young Darshana with her mother

Life changed overnight for this little girl. For a few months after my mother passed away, nobody in the house held me or calmed me down. I spent months crying but, in my brother, I saw a ray of hope. He was my gift, the reason why I wanted to live. So, at five, I became a mother. My world had ceased to exist the way it was, but his world became the center of my universe.

My father, in the interim, got married. Being a child, I could not understand the concept of calling another woman a ‘mother’. One day, I was introduced to my stepmom. We did not connect. She was my father’s new wife, and I was his biological daughter. Even at that tender age, my instinct instructed me to distance myself from my papa. His world had changed for the better and he had embraced it with an open mind and a smile. For me, I was left to deal with life all by myself. I lived in a joint family set up. I think I just grew up on my own. There was no support system. Unlike other children in the house, I had no one to throw tantrums at. There were no wish lists, no fancy birthday parties, or a room to call my own. When I cried, no one hugged or comforted me. Even in those lonely hours, the divine force within me held the strings of my heart.

Then there was this promise that I had held on to … the promise I had made to my mother that I would be her Atta Girl. I started to write stories, build an imaginative world and sought solace in God’s grace. And then, absentmindedly, I befriended books. It was from here that my dreams began to germinate. Every book, every author was akin to my mother. The world of words held the reins of my life, my mind, and my dreams. My world started to reverberate with rhythm, verve, and vitality. The dimpled smile was back and, like a possessed soul, I took the world head-on … like a warrior.

Darshana shares a special bond with her brother

I began to dream. I began to fall in love with the idea of love (thanks to Shahrukh Khan and his romantic movies). I made friends who found my innocence endearing. My teachers, both in school, and college were great mentors. They believed in ‘Darshana’ and encouraged me to appreciate my work. There were times when my answer sheets were discussed and applauded in front of the class toppers. It was in moments like these that my heart would swell with pride and life gave me reasons to smile.

These little spurts of encouragement helped me pave my way in the otherwise competitive world. From clandestinely working for a local agency in the initial years to getting an opportunity to work with one of the biggest newspapers in Asia, life was finally beginning to be kind. I felt normal; as if I belonged, and the financial independence that came along with these jobs gave me wings to fly and live my dream.

There was a time when my brother and I had just started working. We would go to small eateries near our office, scan the menu and order the least priced item. But we were still happy that we were in a position to treat ourselves. We soon graduated from this phase to a phase where we could enter a fancy eatery, say a Pizza Hut, not look at the price and order whatever we wanted. That gave us the confidence that soon we would start living life our way.

Darshana with her daughter

I am now married and so is my brother. I am reliving my childhood through my daughter. Her little arms are my entire world. Her smile, her hugs, and her unconditional love have erased all the pain. There are no bad days anymore. In my daughter, I see my mother. It’s as if she has come back to heal me. My husband’s passion for life and music is infectious and he has given me the stability that I had always dreamt of.

Life continues to challenge me. The rides get fiercer, but my spirit stays buoyant. Even the murky waters and rough terrains could not take away my innocence. However, somewhere deep inside my heart, a faint hope is still alive … a hope that I would meet my mother someday. I feel as if she is hiding somewhere and I will get to hear her, touch her and hug her. Perhaps it’s this hope that keeps the ship sailing. The real treasure of life is not buried under the deep sea, but it is right there in the boat that you are sailing in … it is the little thing called ‘life’ that beats in your heart.

Darshana Shukul’s account is a part of our series on ‘Stories of Loss and Healing’. Read Lakshmi Kaul’s story here. Kaul lost her only daughter, aged nine, to a freak allergic incident in 2017.

(Disclaimer: The views, thoughts, and opinions expressed in the account above belong solely to the authorin this case it being Darshana Shukul, and not that of The Good Story Project or its co-founders.)

“My husband is my spine, and my daughters are the miracle that completes my life”

Rafat Siddiqui’s journey to motherhood began eight years after her life-altering accident in 2010. In this interview, she talks about her supportive family, the special bond that she shares with her husband, embracing motherhood and her daughters who mean the world to her

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“It was a miracle. I asked my husband to buy me a pregnancy kit. In my head, I knew the test was going to be negative, but, in my heart, I was hoping for it to be positive. Those few minutes were the longest of my life. The result made me numb,” said Rafat Siddiqui, 35, who has been in a wheelchair for the past 10 years after meeting with an accident in 2010 that seared her spine. 

Given her condition, she knew the pregnancy was going to be tough on her, but her little babies would kick her and they gave her the strength to carry on with the painful nine months. Born prematurely, her twin daughters were too fragile and tiny and were moved to the Neonatal Intensive Care Unit (NICU) even before she could touch them. When she held her daughters, Fatima and Safiya, for the first time after 10 days, she whispered to them: “I am your Amma, and you are my girls.”

Rafat was just 25 when she met with the accident. She had been married for two years then and life was full of love, hope, and dreams. Being confined to a wheelchair was tough. Being dependent on others for basic needs was heart-breaking. However, the incredible support that she got from her family, especially her husband, gave her the strength. “My husband is my spine, and my daughters are the miracle that completes my life,” she said.

The daughters are two-year-olds now. “There was a time when they were so tiny that they would fit in my husband’s palm. Now, it’s difficult to catch hold of them. They say ‘a child gives birth to a mother’. It’s so true. From the time they have entered my life, even before they were actually born, there’s nothing that’s more important than them,” she said. In this story, she talks about these special bonds.

Rafat’s journey to motherhood has been quite incredible. Image: Mrunmaiy.com
When an ill-fated moment changed her life

Rafat, the eldest among the three siblings, was born in Nagpur but grew up in Mumbai. Her parents managed to give them a wonderful life. She got everything that she wanted, except for a Scooty, which she had been asking for since she turned 15. She graduated, took up a part-time job, and even did a computer course, in a hope that her parents would buy her a Scooty, but that did not happen.

At 23, she got married. Like a typical Mumbai girl, she juggled between her job and managing her house. She loved her routine — wake up early, prepare breakfast and lunch for all, finish household work, go to the office in a crowded Mumbai local train, come back in the evening, have a cup of coffee, chit-chat with her in-laws, and then prepare dinner for all. She would happily spend most of her Sundays in the kitchen cooking something special for her family. The accident changed everything.

In 2010, around the time she met with the accident, she had taken a break from her work to make arrangements for her brother-in-law’s wedding. The house was buzzing with activities, there was a lot of shopping lined up and the house was being renovated. The silver lining for her amid all the craziness was that she was given a Scooty to run errands.

One day, she had to accompany her husband to his office. There was a lot of traffic, but it had cleared by the time she was returning. This time, her sister was accompanying her. Suddenly, she fell off her Scooty – just like that. They were driving slowly, carefully, there was no traffic, they didn’t bump into anyone, no one hit them from behind. And yet, she fell off. Strangely, there was not a single scratch on the vehicle, and her sister was unhurt too.

The accident changed her life
Of confined life and strengthening bonds

She was taken to a hospital as she had multiple bruises and concussions. After several tests, scans, and MRIs, the family was informed that she had also suffered a spinal cord injury … “That’s how she is going to be. Neck down, no movement, no sensation.”  

Her family, especially her husband, was very supportive. “When the doctor informed him about my injury, my husband asked him to carry on with the treatment and said he would be by my side all my life irrespective of whether I was going to be in a wheelchair or confined to a bed. After I was discharged, my father arranged for therapists for me,” she said.

The therapy sessions were painful, but after three to four months, she could at least move her neck, fingers, and had trunk control. The family even opted for Stem Cell Therapy treatment. They first went to a private hospital but found the treatment to be too costly. Then they went to Sion Hospital, (a government hospital in Mumbai). “I was only six months into the injury. The doctors tried to accommodate me saying my body may show a good response. It was a difficult process. I spent two days at the hospital and had to do a lot of exercises after returning. I am not in a position to say if the Stem Cell Therapy treatment was 100% effective, but after six months there was a little sensation in my body. I could take baby steps with the help of a calliper and a walker,” she said.

However, there were setbacks. “I got a foot nail ingrowth, which was quite deep. It resulted in my body to fall back. I had to start all over again. Every time my body showed some improvement, I had to stop because of pressure sores or weakness or some other reason. That became my life then,” said Rafat.

She moved back to her in-laws’ place and hired an attendant. She started working as a freelance content writer, which boosted her confidence. She also started meeting others who were dealing with spinal cord injuries, which motivated her further. Life, however, in her own words, had become very monotonous. It was her husband who played a key role in keeping her happy and motivated. He would take her to malls and they would often go out to eat paani puri.

When asked if the bonding between them has strengthened after the accident, she said: “It’s been more than 10 years, but my husband has never mentioned my condition to me. In fact, he shuts all those around me who say hurtful things, or pull me down. We have been married for 13 years, so we have had our share of ups and downs, but one thing I can say with full conviction is that my husband is my spine. Alhamdulillah, he’s one of the choicest blessings from the Almighty.”

She believes that nothing stops persons with disabilities from being good partners. “When someone accepts a person with a disability as a partner, that relationship is very special. Yes, there is love, but there is also a lot of understanding. They are a lot more patient and they care about each other a lot. The whole chemistry between them changes as they know that life is going to be more demanding, and full of sacrifices,” she said.  

Rafat with her daughters Fatima and Safiya
Embracing motherhood

In 2017, Rafat went on a pilgrimage to Mecca along with her family. The trip was special as it was her first long-distance travel after the accident. After returning, the couple came to know about the miracle.

“Frankly, it just happened out of the blue. Considering my physical condition, the amount of pain and spasms, and involuntary movements in my body, my husband would avoid making any close contact with me as he didn’t want me to go through the pain. However, the Almighty was happy with us and wanted us to experience parenthood. When the pregnancy test came positive, we were too shy to disclose it. Also, we wanted to be completely sure before we could reveal it to our families,” she said.

The first visit to the doctor was crucial as they had to weigh all the pros and cons given her condition and the effect the pregnancy was going to have on her mind and body. It was decided that they would “take a call” if it was going to take a toll on her health. But Rafat was not in a mind to take any such call. She had decided she wanted to be a mother.

She was aware that carrying twins was never going to be easy. “I had to stop all my medicines. I couldn’t exercise. I would be sick all day and all night long. I wouldn’t talk much. I couldn’t sit properly. I would feel uncomfortable if I would lie down for too long. I would have severe mood swings. There were typical pregnancy issues like vomiting, dizziness, breathlessness, and BP,” she said, adding: “It worsened as the babies grew. There were days when I couldn’t even take the smell of food. Managing my bowel and bladder was another challenge. It was taking a toll on my body, but my babies kept kicking me, reminding me to be strong and positive.”

The daughters are two-year-olds now
Being a mother

The babies arrived before the due date and were underweight and quite fragile and were moved to the NICU. “I couldn’t enter the NICU because of the wheelchair and as men are not allowed inside a NICU, my husband couldn’t see them either. They were just 1.4 kgs when they were born. Now they weigh 11 kgs and the credit goes to my parents and siblings. Their feeds, massages, naps, baths, crying and tantrums … my parents handle everything. It does get overwhelming at times with all the sleepless nights and days, anxiety and palpitation, tears and fears, struggle and losses, sacrifices, and compromises. Not just for me, for everyone. But my daughters are the apples of my eyes and my source of energy. They are the miracle that makes my life complete,” said Siddiqui.

This is Part 3 of our series ‘Unbound’ – a spinal cord injury awareness series. Read Mrunmaiy’s story, Ishrat’s story Garima’s story Preethi’s story, Suresh’s story, Kartiki’s story, Ekta’s story.