The sun broke through the cream-colored blinds at my mother’s New Jersey home. I felt its warmth on my face before throwing my body weight to one side, trying once again to roll and push up to sit.
I hoped the sudden movement would give me some momentum, but it wasn’t enough and I rolled back down, my back once again flat against the bed, sinking deeper into the plush mattress my mother had bought for me when I returned to her home.
In my bedroom in Mumbai, my mattress is made of high-density foam, a better surface to move on for someone like me, someone with muscular dystrophy. If I needed a hand to sit up, my live-in caregiver, Martha Tirki, was a holler away. But in New Jersey, my mother was still sleeping upstairs and I hated the thought of waking her up to help me. My part-time caregiver wouldn’t arrive for another hour. After more failed attempts with lots of twisting and turning, I finally sat up.
I took some seconds to feel good about this because it was easy to think otherwise, to think: All of that and I haven’t even gotten out of bed yet.
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 functional, 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 walking to class. And it became harder to climb the subway stairs.
My family and I got genetically tested and discovered that my parents carried a defective recessive gene, a gene that forever changed the way I’d interact with the world around me. A gene that eventually meant I wouldn’t be able to take care of myself alone anymore.
As my disease progressed, it ushered in a way of living that made other people’s hands a crucial part of my most basic activities. For me, and many others with physical disabilities, touch is not merely a luxury or a pleasure, but an aspect of my functionality, my basic survival. Many other people’s hands were now a part of my daily routines.
That is, until Covid descended on the world.
My parents are both doctors who are originally from North India. In 2008, I traveled to India with my father in search of an alternative cure for my condition. I ingested ayurvedic herbs in Pune, consulted healers and astrologers in Mangalore and learned yoga at ashrams in Rishikesh in an effort to arrest my body’s degeneration.
When that didn’t work, I returned to New York and attempted to resume the life I had left behind. I got a job and insisted I could live alone. But it wasn’t long before I needed help with everything from showering to walking to cooking to driving and sometimes even sitting up. I ended up returning to India for a stem cell procedure that seemed promising, and living in Mumbai for its accessible physical therapy and home care options, two essential services that have kept me functional and semi-independent. Now more than ever, other people’s hands were my lifelines.
And so I came to rely on people and their hands. People like Verna, my physical therapist, whose intuitive hands perfectly positioned my legs as we worked individual muscles during our sessions. Or Anjali, my aqua therapist, whose soft hands stabilized the forward tilt of my pelvis as we walked together underwater. Or Sheila, my masseuse, whose heavy hands rubbed out the soreness in my muscles and brought new life to underused or atrophied parts of my body. Or Karishma, my yoga teacher, whose hands stretched my arms overhead because they couldn’t do that on their own. Or Martha, who held my cup of tea in the morning with one hand and held me with the other as we walked over to my customized desk and chair so I could write. When I was ready to shower, she hoisted me up and we locked hands as we moved on 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 slight, supportive touch and my body would take care of the rest. Sometimes I wasn’t able to tell if she was moving my leg or whether my muscles were performing the exercise on their own. But it didn’t matter. Much of the time it was about knowing that her hands were there to support me if I needed them.
My body and mind rely on touch as a means of support, as a method of surviving and navigating a life with muscular dystrophy. When India’s lockdown hit, my therapy stopped abruptly. I continued sessions on Zoom 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’d recruit help from a nearby stranger or security guard outside a building I was entering and they almost always assisted me. Now asking for a hand, even if it was gloved, was dangerous, sometimes even impossible. I was being met with suspicious stares and mumbles under half-hidden faces. I felt helpless and yet I understood. Touching someone you didn’t know, or even someone you did, could mean contracting a mysterious, invisible illness — or worse — death.
After relying on so many hands to help me, I was left with only two, those of Martha, who took great care of me the first several months of the pandemic. I was grateful for her help and felt the significance of our pairing the longer the lockdown persisted.
Still, I felt deprived of the comfort that came from touching my loved ones. In July, I flew back to New Jersey for hugs from my family and to curl into bed with my mother at night, warming her feet with mine. Martha returned to her village because she didn’t have a passport. I cried deeply when we parted ways.
Even though I tried to stay active in New Jersey, I worried about exposing my parents to too many caregivers, so I couldn’t receive the same care I did in India. With Covid cases raging across the country, I wondered when we would ever touch again.
With India’s ambitious plan to roll out the vaccines, I returned to Mumbai not long ago, back to Martha and my other caregivers, to the hands that once touched me. I need extra support for my body now, which is a vulnerable thing to ask for at any time, and especially during a pandemic. After I completed my quarantine, I got back to my normal activities, including physical therapy. It felt surreal to see my therapists, to get back in the pool and move my body again with the help of other people.
At home, I look out over the balcony to see people wearing masks and carrying on with their lives. Streets that were once empty are now full of noise. Schools have not reopened since the lockdown, and the numbers of cases and deaths in the country have dropped.
I’m working on getting registered for the vaccine soon not only for myself but because I need so many people to help me, I am constantly in the position of putting others at risk.
As more of the world gets vaccinated, our physical interactions will change again. And with that change comes a deeper understanding of what it means to ask for a hand.
Sonali Gupta is a writer based in Mumbai who is working on a book about her search for a cure for limb-girdle muscular dystrophy.
