The sun broke from the cream-colored blind at my mother’s New Jersey home. I felt the heat of it on my face before throwing my body weight aside, trying to push once again to roll over and sit.
I hoped that the sudden movement would give me some momentum, but it wasn’t enough and I rolled back down, my back flat against the bed once again, sinking deep into the plush mattress my mother had bought for me when I Returned to his house.
In my bedroom in Mumbai, my mattress is made of high-density foam, a better surface for someone like me to move on, with muscular dystrophy. If I needed a hand to sit on, my live-in caregiver, Martha Tirkey, was a hunter. But in New Jersey, my mother was still sleeping upstairs and I hated the idea of waking her up to help her. My part-time carer will not come for another hour. After a lot of unsuccessful attempts with lots of twists and turns, I finally sat down.
It took me a few seconds to feel good about this because it was easy to think, otherwise: all this and I haven’t gotten out of bed yet.
It was 12 years ago when I learned that I had limb-girdle muscular dystrophy, or LGMD, a rare and progressive muscle-wasting disease. Before I was a fully functional, independent young woman about to graduate from New York University. I had a good Telugu friendship and an active social life. I had a head full of job offers and dreams. But I would suddenly fall while going to class. And it became harder to climb the stairs of the metro.
My family and I were genetically tested and discovered that my parents drove a faulty recursive gene, a gene that forever changed the way I interact with the world around me. A gene that ultimately meant that I would no longer be able to take care of myself alone.
As my illness progressed, it introduced a way of living, which made other people’s hands an important part of my most basic activities. For me, and with many other physical disabilities, touch is not just a luxury or pleasure, but an aspect of my functionality, my basic existence. The hands of many others were now part of my daily routine.
That is, until the Kovid descended upon the world.
Both my parents are doctors who are originally from North India. In 2008, I traveled to India with my father in search of alternative treatment for my condition. I consumed Ayurvedic herbs in Pune, consulted healers and astrologers in Mangalore and learned yoga at ashrams in Rishikesh in an effort to prevent 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 be alone. But it was not long ago when I needed help ranging from walking from shower to cooking to driving and sometimes even getting up. I started returning to India for a stem cell procedure that looked promising, and was 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 lifeline.
And so I came to trust the people and their hands. People like Verna, my physical therapist, whose placid hands deploy my feet perfectly as if we had worked individual muscles during our sessions. Or Anjali, my aqua therapist, whose gentle hands stabilized the forward bending of my pelvis as we walked together underwater. Or Sheila, my masseur, whose heavy hands caused a soreness in my muscles and more or less caused some parts of my body. Or Karishma, my yoga teacher, whose hands spread my arms because she couldn’t do it on her own. Or Martha, who grabbed my cup of tea with one hand in the morning and held me with the other, as we walked to our customized desk and chair so that I could write. When I was ready to take a shower, she hoisted me and we locked her hands as we went to the next activity.
During our leg exercise routine, Verna placed her palm against my knee and told me that all I needed was a light, supportive touch and my body would take care of everything else. Sometimes I could not tell whether she was shaking my leg or exercising my muscles on her own. But it did not matter. Most of the time it was about knowing that if I needed them, my hands would support them.
My body and mind depend on survival as a means of touch, and as a method of navigating life with muscular dystrophy. When India was locked out, my medicine suddenly stopped. I continued the session on Zoom while Martha tried to help me keep up with practice, but it was not enough. I needed trained hands on my body, and I wasn’t sure what would happen without them.
Before the epidemic, I was enlisting outside a building to get help from a nearby stranger or security guard who I was entering and they almost always assisted me. Now asking for a hand, even if it was folded, was dangerous, sometimes impossible. I found suspicious stars and mummies under half-hidden faces. I was feeling helpless and still I understood. Touching someone you didn’t know, or even someone you did, can contract mysterious, invisible disease – or worse – death.
After relying on so many hands to help me, I stayed with only two people, those of Martha, who took great care of me in the first several months of the epidemic. I was grateful for his help and felt the importance of our pairing that the lockdown persisted for a long time.
Nevertheless, I felt deprived of the comfort I get from touching my loved ones. In July, I flew back to New Jersey to hug my family and curl up in bed with my mom at night, warming my feet with me. Martha returned to her village because she did not 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 carers, so I did not receive the same care that I had in India. Kovid’s case raged all over the country, I thought when we will touch again.
Together India’s ambitious plan to roll out vaccines, I returned to Mumbai long ago, at the hands of Martha and my other caretakers, once to touch me. I now need additional support for my body, which is a sensitive thing to ask at any time and especially during an epidemic. After completing my quarantine, I returned to my normal activities including physical therapy. It was surreal to see my therapist, go back to the pool and move my body again with the help of other people.
At home, I see people outside on the balcony wearing masks and carrying them with their lives. Roads that were once empty are now full of noise. Schools have not reopened since the lockout and A. The number of cases and deaths in the country has come down.
I am not only working on getting myself registered for the vaccine, but because I need so many people to help, I am constantly in a position to put others at risk.
As the world gets more vaccinated, our physical participation will change again. And with that change comes a deeper understanding of what it means to put a hand.
Sonali Gupta Is a writer based in Mumbai, working on a book about his quest for a cure for limb-girdle muscular dystrophy.