“In our country, we take the caregivers for granted. Tell me about you ma’am, your struggles, your wishes; it must have not been easy”, I urged Neelamji, the elegant lady in the beige cotton salwar suit. She had long, straight hair, more salt than pepper, a soft but firm voice and petite shoulders, which had borne a lot of burden. She was the 9th interviewee for my book, Ten on Ten, a compilation of ten personal narratives of survivors struggling with advanced head and neck cancer. Neelamji is the wife and primary caregiver of Shrenik bhai, a miracle case study at the cancer hospital HCG in Ahmedabad. This was our third session together, for most part of the first and second, my focus had been on Shrenik bhai and his treatment.
“He was diagnosed with stage four cancer. God has given us the gift of his life, what more can I ask for”, she said in a tone, perhaps rehearsed over the years. But I sensed a longing in those otherwise happy eyes. “Any regrets, anything you would have done differently, anything that you feel you have lost out on”, I pressed. “Err…”, she looked at her husband, thought some more and then said somewhat hesitantly, “One regret, very small really.” “Yes?” I asked gently. She thought some more. “You can tell me… about the small regret”, I urged again.
She had been the primary caregiver to a cancer patient for more than a decade. As much as her husband’s survival could be credited to the right diagnosis and state-of-art treatment, her unflinching and endless care too played an equal role, I was told, none other than from the doctor’s team! So yes, I wanted to know what this soft, delicate woman sitting in a pastel beige salwar suit in front of me regretted.
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“You know about the speaking machine right?” she looked at me. Neelamji was referring to her husband’s medical device, Electrolarynx, which he used for speech ever since he lost his voice box to throat cancer ten years ago. “Once he disconnects the speaking machine at night it’s like he has switched his voice off. He can’t speak after that. In those silent nights, during those intimate moments, even if it is just holding each other, maybe just an embrace, he can’t talk…anything; no, ‘I am so happy to be here’, no, ‘I love you’, no…nothing. I pour my heart out, I know he wants to too, he knows I would give anything to hear him but…. I really should not complain. People have lost their loved ones to a much lesser cancer. God has been so kind, I should not complain”, she wiped her tears off in a quick movement, avoiding her husband’s eyes.
Her husband looked at her, with what I sensed to be deep anguish. Tears welled up in her eyes again and I was a witness to this very intimate moment of a couple who had raised two children, fought cancer and had three grandchildren in their thirty-five years of married life.
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“What would you have wanted me to say?” he asked her.
“I would have wanted to hear my name, the way you say it. The way you say it is different, from all others, no one says my name like you do…I miss it…then.”
I excused myself and gave them what they needed most, privacy.
Yes, it is true that our name does sound different from the lips of our beloved. When they call us, the moment they return from work in the evening or the way we can tell from the tone the mood they are calling us in.
I also thought of all the things we take for granted with our partners – our time together, the home, children, what we add to day after day. And I thought about how we suppress our need to even express our need for intimacy. Perhaps as a developing nation we do not have that luxury i.e. if we can call the need for intimacy a luxury….