The sun broke through the cream-colored blinds in my mother’s house in New Jersey. I felt his warmth on my face before I tossed my body weight aside and tried again to roll over and push myself up to sit.
I hoped the sudden movement would give me some momentum, but it wasn’t enough and I rolled back, my back flat against the bed again, and sank deeper into the soft mattress my mother bought for me than I was going to her returned home.
In my bedroom in Mumbai, my mattress is made of high density foam, a better surface for someone like me, someone with muscular dystrophy. When I needed a hand to sit up, my carer Martha Tirki was a stone’s throw away. But in New Jersey my mom was still sleeping upstairs and I hated the thought of waking her up to help me. My part-time supervisor wouldn’t be arriving for another hour. After further failed attempts with a lot of turning and turning, I finally sat up.
It took me a few seconds to feel good about it because it was easy to think differently, to think: All of that and I haven’t even got out of bed.
It was 12 years ago when I learned I had limb girdle muscular dystrophy, or LGMD, a rare and progressive muscle wasting disease. Before that, I’d been a fully functioning, independent young woman about to graduate from New York University. I had well-oiled friendships and an active social life. I had job offers and a head full of dreams. But I would suddenly fall while going to class. And it became more difficult to climb the subway stairs.
My family and I were genetically tested and found that my parents carried a defective recessive gene, a gene that forever changed the way I interacted with the world around me. A gene that ultimately meant that I could no longer take care of myself alone.
As my disease progressed, it initiated a way of life that made other people’s hands a crucial part of my most basic activities. For me and many other people with physical disabilities, touch is not just a luxury or a pleasure, but an aspect of my functionality, my basic survival. Many other people’s hands were now part of my daily routine.
That is, until Covid descended on the world.
My parents are both doctors originally from Northern India. In 2008 I traveled to India with my father to find an alternative cure for my condition. I took Ayurvedic herbs in Pune, consulted healers and astrologers in Mangalore, and learned yoga in ashrams in Rishikesh to stop the degeneration of my body.
When that didn’t work, I returned to New York and tried to resume the life I had left behind. I got a job and insisted that I could live alone. But it wasn’t long before I needed help, from showering to walking, cooking, driving to sitting. I ended up returning to India for a promising stem cell procedure and living in Mumbai for its accessible physical therapy and home care, two essential services that have made me functional and semi-independent. Other people’s hands were my lifelines more than ever.
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Apr. 10, 2021, 11:42 p.m. ET
And so I came to rely on people and their hands. People like Verna, my physiotherapist, whose intuitive hands perfectly positioned my legs as we worked individual muscles during our sessions. Or Anjali, my aquatherapist, whose soft hands stabilized the forward tilt of my pelvis as we went underwater together. Or Sheila, my masseuse, whose heavy hands rubbed out the pain in my muscles and breathed new life into underused or stunted body parts. Or Karishma, my yoga teacher, whose hands stretched my arms over me because they couldn’t do it alone. Or Martha, who held my cup of tea with one hand in the morning and held me with the other when we went to my custom-made desk and chair so I could write. When I was ready to shower, she picked me up and we closed our hands as we proceeded to the next activity.
During our leg exercise routine, Verna held her palm against my knee and told me that all I needed was a light, supportive touch and my body would take care of the rest. Sometimes I couldn’t tell if she was moving my leg or if my muscles were doing the exercise on their own. But it didn’t matter. Most of the time it was about knowing that her hands were there to support me when I needed them.
My body and mind rely on touch as a means of support, a method to survive and manage a life with muscular dystrophy. When India’s lockdown hit, my therapy stopped abruptly. I continued the zoom sessions while Martha tried to help me keep up with the exercises, but it wasn’t enough. I needed trained hands on my body and I wasn’t sure what would happen without them.
Before the pandemic, I recruited help from a stranger or security guard near a building I was entering and they almost always helped me. Asking for a hand now, even if it was gloved, was dangerous, sometimes impossible. I was met with suspicious looks and marbles from under half-hidden faces. I felt helpless and yet I understood. Touching someone you didn’t know, or even someone you knew, could mean contracting a mysterious, invisible disease or even a worse death.
After relying on so many hands to help me, there were only two left, Martha’s, who had taken great care of me during the first few months of the pandemic. I was grateful for their help and felt the meaning of our pairing the longer the lockdown lasted.
Even so, I felt deprived of the comfort that came from touching loved ones. In July, I flew back to New Jersey to give my family a hug and to go to bed with my mother at night and warm her feet with mine. Martha returned to her village because she did not have a passport. I cried deeply when we parted.
Although I tried to stay active in New Jersey, I was concerned about exposing my parents to too many caregivers so that I could not get the same level of care that I received in India. With Covid cases across the country, I wondered when we would ever touch again.
With India’s ambitious plan to introduce the vaccines, I recently returned to Mumbai, back to Martha and my other caregivers, to the hands that once touched me. I now need extra support for my body, which is vulnerable at any time and especially during a pandemic. After completing my quarantine, I returned to my normal activities, including physical therapy. It felt surreal to see my therapists get back into the pool and move my body again with the help of other people.
At home, I look over the balcony to see people wearing masks and going on with their lives. Streets that used to be empty are now full of noise. Schools have not reopened since the lockdown and the number of cases and deaths in the country has fallen.
I’m working on not just registering for the vaccine for myself soon, but because I need so many people to help me, I’m constantly able to put others at risk.
As more people in the world are vaccinated, our physical interactions will change again. And with this change comes a deeper understanding of what it means to ask for a hand.
Sonali Gupta is a Mumbai-based writer working on a book about her search for a cure for muscular dystrophy using limb belts.
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