What It’s Like to Live With explores the stories of the loved ones living with and/or caring for people who see and experience every day a little differently.
I was diagnosed with polio when I was 4 and a half years old. Today, at 34, I’m living with paralysis in my legs, and I’m wheelchair-bound. I live with my parents and a caretaker. I’m totally dependent on them to get by the day. My mother and the caretaker bathe and feed me, help me dress, and help me with everything else that others don’t need help with. I don’t work, except sit around in my father’s shop and speak with customers. It keeps me distracted, and then once I’m home, I watch a little television and go to sleep.
When the news of Covid19 came in, and the precautions one was supposed to be taking, everyone was definitely concerned about me because people with vulnerabilities are more at danger of being infected. But the more worrying bit was isolation and social distancing.
How does one do that with a physical disability? I constantly need help, even with the smallest of chores, and people are always in contact with me. This means my life is at risk — but so is theirs.
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Something as simple as washing hands is difficult for me to do because I need help reaching the sink. And somebody constantly touching me means I have to repeatedly wash my hands. But how many times a day do I keep asking for help? In the middle, we had also run out of sanitizer. My parents are in their 60s, and that’s a dangerous age group, too. They are probably as vulnerable as I am.
We were contemplating letting go the caretaker because we wanted to co-operate and practice social distancing as much as possible. But in my case, it’s difficult for my mother to do everything for me. We have anyway asked all our other house help to take care of themselves and not come to work. This means not only does my mother have to take care of the household work, but me too. But for the safety of everyone, we did ask the caretaker to stay home.
It’s been a week, and both my mother and father are doing as much as possible. Since my father is not going to the shop, he’s home and helping out with a lot of household chores. It’s visibly taking a toll on them.
I can’t help them with anything, except sit and watch them clean, cook, or go to buy things. Even in that case, only one of them can go, because someone needs to be home with me. Most of the time, it’s my mother because it is she who can help me with intimate tasks. Now they’re extra careful around me, washing their hands as many times possible and making me wash mine too.
We’ve ensured there is very limited contact with the outside world, and this is because I’m around at home. We don’t know when this will end, but I do want it to because it’s making my parents very tired.
Taking care of a fully-grown adult who needs the same care as a baby, like they are still, is not an easy task. We are hoping all of us can resume our duties soon and life gets back to normal.
This interview has been condensed and edited for clarity. As told to Anubhuti Matta.
