RIMA PANDE goes into the mind of her paralysed father to understand how he must have viewed the world as he lay in bed dependent on others. In her book, ‘His Voice’, she captures some deeply touching and poignant moments with her father. She speaks here to RITU GURHA and hopes her book will help others in similar situations

His Voice’ is a quick read, yet a deep dive into the mind of a deeply loved and tragically paralysed father. By delving into his agony and powerlessness, Rima Pande, his daugther lays bare the tenets of life that guide families who have to live through such an overwhelming situation. By maintaining the humdrum and routine with steadfast cheer, even as options to improve dwindle, the family does the extraordinary with seeming ease. 

For families in a similar situation, His Voice can serve as a friend and guide. It can also be a valuable read for experts who craft policies and budgets about palliative care. I spoke to the author about the goal and process of writing such a personal book. Some excerpts from the interview: 

What inspired you to write this book?

My father had two successive strokes within a month, leaving him paralysed, neck down, and unable to speak. My mother served him selflessly for two years, supported by my amazing family, friends, and helpers. She set a positive, respectful, uplifting, happy tone in my father’s hospital room and at home, and everyone followed her lead. People, music, conversation surrounded him. During this period, I spent many weeks with them. We stared at the constantly changing expressions on his face for clues — was he too hot, too cold, in pain, hungry, uncomfortable, attentive, tired, sleepy, somewhat happy — maybe? We looked deeply into his eyes, searching for direction, pretending to understand what he would like us to do, doing it, and then searching for an almost imperceptible nod of approval. When he slept, I often sat and looked at his face, wondering what was going through his mind, imagining the turbulent flow of thoughts, trying to immerse myself in his stream of consciousness. His Voice is a first-person narrative of my father’s unspoken thoughts and my effort to give a voice to my father during the two tumultuous years he was bedridden, interspersed with memories of his life. 

Rima Pande, the author of His Voice

What was it like to write the book?

It started as a therapeutic experience, helping me deal with a roller-coaster of emotions — confusion, denial, hope, frustration, grief, regret, pride and joy. I did not share the manuscript with anyone for many years till the pandemic in 2020, when I dusted it off, drummed up the courage to have a few people read it, and hesitatingly decided to publish it. 

Why the name, His Voice?

It is not a spiritual book referring to god’s voice or a self-esteem-building help book. I called it His Voice because it is all about him losing his voice and ability to communicate, and it is about me trying to be my father’s voice.

What do you want to convey through this book?

Every ordinary person has an extraordinary life story. This story puts the reader into the mind of a person facing a monumental crisis, and experience events from his point of view, and feel what he is feeling. The tone of the book reflects his personality — thoughtful, calm, never depressing. It is a story of resilience — working with what life throws at you with a smile on your face. It is about relationships — spousal commitment, family support, the parent-child bond. It is about respect — for everyone, whatever state they might be in, however, limited their physical or mental ability. It is about realism — positively dealing with challenging situations, understanding that effort does not always yields results one hopes for, but continuing the struggle. I hope it makes readers pause, acknowledge and appreciate the relationships in their life. 

I hope it will make readers think about how they view and interact with not fully functional people. And deliberate on the grey area between living and existing, defined by attitude, not physical and mental status.

What did your friends and family think about the book?

The characters are all personal family and friends. Some of them read the final manuscript before it was published. My mom was pleasantly surprised, somewhat uncomfortable, but supportive of my decision to publish it, mostly because she thought it might help families in similar situations approach caregiving in a positive, happy and respectful way. My aunt felt I could have written more. My sons, who were very young at that time, said they enjoyed reading about their grandfather’s life. A friend, who is also in the book, said she read it all the way through and loved how it brought attention to extraordinary challenges in ordinary lives, and how important it is to look at such situations from the view of the person impacted, and keep caregiving happy and positive.

Rima Pande’s book, His Voice is available on Amazon

Your mom’s steadfast and cheerful commitment to your dad is visible all throughWould you like to share some of the things you most admired about her in the situation?

My admiration for her physical and mental stamina increased manifold during this period. Whether it was big decisions on seeking care for my father (which she made “jointly” with him) or about his routine, food, and physical therapy, my mother set the tone and the benchmarks. Despite the overwhelming situation, she made his room a happy place. People did not hesitate to come to meet them. And her positive energy and optimism never wavered. Through the two years, she talked, encouraged, read to him, and hugged him, while sleeping on a diwan near his hospital bed, going out only when necessary (and even then, making sure someone was there to support the attendant). 

You say that respect and love for your dad guided you, your mom, and your close family to make his life as comfortable as possible. Did you do this consciously? Do you think families in such situations need counselling?

I do think, respect and love guided us. I hope that, even though he could not communicate and we were helpless, he saw how much he was loved and wanted. My mother set the example, and we followed. He had always been a gentle, respectful person himself, and everyone around him had positive memories of their interactions with him. The question about counselling is very personal and situation-specific. My mother, for example, would have flatly refused to leave my father and go anywhere. She has always relied on prayers for mental strength and continued to do so during the two years and later. She relied on her siblings and close friends for support. It is important to have people around whom you can talk to, who listen and understand such as a sibling or therapist.

Ritu Gurha

It is evident from the book that after some time, his recovery plateaued. How did you keep his and your morale high? Do you think his calm nature helped him be less frustrated?

He always focused on applying everything one reads about religion and philosophy to one’s own life to improve how one reacts to people and handles situations. “Moment to moment, breath to breath, let your thoughts and actions be in harmony with ground reality” was one of the many thoughts I found in his diaries after he passed away — It’s a sub-header for the book’s last chapter. After his first stroke, he was calm and strong when he could still speak and interact and use his arms. There was never any panic or distress during the two weeks following his first stroke, mild annoyance at most. After his second stroke, we had no way to know what he was thinking, but he had expressions on his face — I saw reflections of a smile, grimace, sadness, a variety of emotions. During physical therapy, one could almost see him concentrating and making an effort. But mostly he was quiet and observant, trying hard with the limited abilities he had left. 

The author of ‘His Voice’, Rima Pande is a strategy consultant, with a strong passion for equitable socio-economic development. She enjoys parenting three amazing kids, unstructured and experimental cooking, and “maximum” travel. Her favourite leisure activity is sitting outside in her Adirondack chair with a book when it is sunny and 22 degrees Celsius. She lives in the USA in Boston. 

US-based Ritu Gurha is a writer, content strategist, and language enthusiast who writes on subjects as diverse as behavioural finance and zeitgeist.

(Featured Image Courtesy: Tipitoy Arts)