June 23, 2021

Utpala Deb on life after an extremely difficult phase

Meet a mum who lives in the hills who has admirably carved her way to lead life as a single parent. This is a story of an inspiring mum who lost her husband to cancer; resumed back to work to be the breadwinner again after her spouse’s death and today is coming to terms with what is there in life.

Yet she is someone who hasn’t given up on aspirations, her dreams for herself and her child. A story we recommend you read, like and share.

Utpala Deb shares with Mums and stories, “My childhood was too much fun. We grew up in golden times, without gadgets and gizmos. We did what all children love to do, that is run around in open fields with friends in the neighbourhood and cousins, basically being ourselves.

We cherished floating paper boats in tubs full of water. Watching cricket or Chitrahaar, Malgudi days, Bharat Ek Khoj, Hum Log on TV was my favourite pastime.  I was mad about cricket, used to wake up even at 3 am just to watch the matches held in Australia. The delicious smell of pithas and ladus become a beloved festival memory of my mom’s kitchen.

Dad’s job was transferrable; he was always on the move. I recall the letters he wrote to us before our exams when he was out of Guwahati. Vacations were spent mostly at grandparents’ place with cousins, uncles, aunts and extended families. Today, these memories become treasured recollections.

I started working immediately after completing my studies. My first job was with a media house as a Trainee Production Coordinator based in New Delhi. In fact, even after my marriage, I continued to work. After my child’s birth I took a break.”

Recalling her memories of meeting her husband, Utpala shares, “We spoke mostly on phone and on few occasions we exchanged our pictures through mail (Social media was non – existent during those days). I was in Guwahati that time and he in New Delhi. I still cherish the fond memories of falling in love with Amar simply by talking on phone. We decided to get hitched. We both moved to Dehradun after marriage (he worked with ONGC) in 2007. Life was indeed beautiful. We were blessed with our child Kabir, and soon we got busy with this tiny tot moving around with toys.

Life came to a standstill when Amar was diagnosed with Acute Myeloid Lukemia in May, 2012. However I must add that Amar’s diagnosis was not late. Leukaemia is characterised by its type. Amar was diagnosed with Acute Myeloid Leukaemia- M5. According to the doctors this was the most stubborn type of Leukaemia; there were higher chances of relapse.

We got the best of treatment, thankful to ONGC for bearing all the expenses of treatment. Amar was initially admitted in Apollo Hospital, New Delhi. The entire family was in a state of shock. I could not believe that this happened with Amar, he was so full of life. Initially, we tried to convince ourselves it was some infection that needed specialised treatment. We felt he would recover completely after few days of hospitalisation. Our son Kabir was with his grandparents. He was only 2.5 years. But he has been a brave boy. He always adapted to the situation, although we felt the pain he went through when we both were in the hospital and he had to be away from us.

Every morning we waited for the nurse to get the blood test reports. We were eager to get some good news from the doctor. After the first phase of chemotherapy, I asked the doctor if Amar was going to be fine. And the doctor looked confident and positive about the treatment. When the ailment relapsed after five months of initial chemotherapy, we were clueless about why life got so difficult?

Amar was again admitted in Apollo Hospital, New Delhi. This time the doctor informed us that it was essential for Amar to undergo bone marrow transplant and that there were 50 per cent chances of him surviving. Besides, bone marrow transplant itself was a daunting task. There were high chances of getting various other infections that might lead to the person’s death. Amar’s college friends and colleagues from ONGC were like life support. They were running around looking for blood donors. So many people called up to donate blood.

We enquired about bone marrow transplant with many people, including some doctors in Mumbai. Finally, we decided to apply for a transfer to Mumbai. We put Kabir in one of the playschools nearby. He kept on asking as to why was his dad admitted in the hospital again. After few months of treatment Amar’s health deteriorated. He was in too much pain and he had no energy and medicines did not work. He lost his memory following a brain haemorrhage and breathed his last on May20, 2013.

I was in a mess and at that moment collapsed into my sister’s arms.

Suddenly the world seemed so depressing without Amar. I was exhausted. Grief affected me both emotionally and physically. I suffered from severe headaches and back pain. But family and friends stood like pillars of strength. My son was my motivation to heal. I gathered courage to face the turbulence. I got selected in Snehalaya Centre for Child Rights in Guwahati as an Academic Coordinator (for MA in Human Rights under Assam Don Bosco University) and started working with children who were underprivileged or abandoned and distressed.

I realized that there is so much pain and misery in this world. My education was my strength to work for the downtrodden and the marginalized. I continued my work for two years. After that I got an opportunity to study Diploma in Education in Special Education (Mental Retardation) from Composite Regional Centre, under Ministry of Social Justice and Empowerment, Govt. of India. This two year programme is approved by Rehabilitation Council of India.

I was inspired by the work of the special educators while working with an NGO in the field of disability in Dehradun as a Communication Coordinator, who put great efforts to train children with disabilities. I took the risk of leaving my job with Snehalaya and joined the Special Education Course. It was one of the best learning grounds.

Single parenting is definitely challenging as it entails added responsibilities. When Amar was alive, I was assured of the presence of an emotional support. As a single parent, I have to take all decisions of rearing the child by myself. You have to meet the requirements of the family, meet your professional obligations and also look into the emotional pre-requisites of your child, notwithstanding your own emotional turmoil. The first year after Amar’s death was traumatic. I felt life was being harsh to me. I used to get irritated by small things. I read a lot of books to overcome the emotional stress, spoke to friends and cousins who constantly supported and gave the courage to move ahead. My son is such a blessing. He is a great motivating factor in my life. His smile makes me feel positive about life. “

As Utpala interacts with a lot of children who are coping wiht multiple disabilities, she has a few pointers that she wishes to share with parents raising such children. She says,” When a child is diagnosed with a disability, parents are shattered and this is accompanied by strong emotions such as fear, anger, disbelief and shock. In most cases, it becomes extremely difficult to accept the diagnosis. They begin to isolate themselves from others. This hinders communication between husband and wife and grandparents.

Some families often take to superstitious practices. The time, financial aspects, physical and emotional demands and family isolation associated with a child with disability has serious repercussions.  They undergo physical and emotional stress owing to difficulty in finding an appropriate care giver. All these affect decisions about work, education, family functioning and the well being of the child with disability. It becomes extremely difficult to convince parents about therapy services. Parents get disappointed with the fact that their child is not “perfect”, representing a threat to their ego and value system. Their high expectations fail to acknowledge the child’s potential and abilities.

Thankfully there are families who are positive about training and therapy services. They want to work with professionals to help their children learn the basic skills of living.”

Talking about the stigma that has unnecessarily cropped up in society post a spouse’s death, Utpala opens her heart on this topic. “What saddens me is that the society is very judgmental about widows. In our society, people looked down upon widows. There were times when people blamed me for Amar’s demise and culturally, the widow is not supposed to groom and wear bright coloured clothes. But the men are never questioned or blamed.

And I was surprised that such opinions came from the educated lot. I was being criticism for taking up work. I was in emotional turmoil and was tired of responding to irrational and irresponsible questions. The world that once seemed beautiful suddenly got destroyed.

Family and friends were my support system. I gathered courage to confront the situation. I took time to heal and I knew I would not give up. I continued with my work, study and responsibilities.

Recently, I have joined a reputed school as a Special Educator. I am fortunate to have such wonderful colleagues at my workplace. I am also associated with Mind India Institute of Positive Mental Health & Research and MATRI, based in Guwahati.

Regarding my wish for my child, I would say, I want my child to stay happy and learn to be compassionate.

I have to mention that my parents have been my biggest support, my lifeline and likewise I have received a lot of support from my in-laws too.

I live in Guwahati. It is surrounded by hills and in the biggest city in North-East India. Over the years, the city has seen many changes.

But it is still home.”

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