Shrinking Choices with Progressing Illnesses and The Will to Carry On

Life is full of choices but it never feels like privilege. Almost 12-13 years back, I would be going out whenever I felt like, wear what I’d want, eat whatever and whenever and as much as I wanted. I would stand in front of the mirror, check how I looked. Do what the people around me did, sometimes even better than them, competed, studied, played and what not. There was never enough to choose from, always felt that something lacked even after having so much because that’s how it’s supposed to be. One doesn’t have to be cautious or grateful when no one around them is, these happen when one has the time to reflect, when one is isolated, not in the midst of the world rushing all around them.

Choices feel endless.

You go to the movies, parks, parties, cafes, restaurants. Whether to go for a run in the morning or go to play with friends or go to some place for recreation or stay out late.

Then one day it all begins to change. Not immediately but gradually, it slowly creeps in. An illness that simmers underneath all these years begins to surface. It doesn’t deduct your choices immediately but it starts affecting them, you start making adjustments around them instead of completely avoiding them.

You start feeling the symptoms and they make you less efficient at what you could do. Try to ignore them and they remind you back stronger. A friend calls to tell you what’s the plan today and you don’t know what to answer? They list out ten tasks for the day and you search for the least exciting one now. You say let’s do the rest of the nine. It feels nice, nine out of ten isn’t bad, it’s always good. You get used to the new but a month later, you’re made to make another adjustment. Your phone rings again, your friend lists the nine tasks for the day but you find yourself incapable, you’re fit for only seven or eight now. Your friends understand, they’ve seen you struggle lately.

Now, you have started making some compromises. You don’t dress or look as best as you tried to and that worries you a bit but you tell yourself it’s fine. You tell yourself you’re not lazy, you truly don’t feel the need to do now like you used to. Gradually, months pass by, years pass by and you see that the choices have come down to barely three or four at most. Friends don’t call as frequently as they used to, you go out only for one thing now which is just going out, nothing else. Anything else along with the outing is a burden. You don’t choose what to wear - shirt, t-shirt, jeans, pants, socks, shoes or how you look. No more standing in front of the mirror. Being able to stand for a few minutes is more important now and soon that will be a lost choice too.

The world becomes smaller.

People around talk about careers, travel, relationships. You listen, smile while wondering how you’d be able to turn around in bed during sleep tonight or will your back and shoulders hurt today also. This is the new choice, a mandatory choice. These things choose you now, not the other way round.

The nights that ended with thinking about what all to do tomorrow now ends with - Will I be able to wake up pain free tomorrow and if not then will it be lesser than what it was today? Will I have the strength to get out of bed?

More years pass. A wheelchair arrives without ceremony, quietly. At first you hope it's temporary, only a tool, a convenience but it becomes a necessity.

The choices, by now, are down to one or two. Going out is rare, most places aren’t accessible anyway. You just stay in your car and that too is tiring. You don’t choose where to go anymore, you’re okay with any place. How does one look, is a question that rarely occurs now. You have to plan and start preparing on Wednesday for a bath on Sunday. So exhausting and worrying are such basic tasks. On Sunday after the bath, there is no strength left for anything else, so sleeping for hours is the only choice left afterwards.

At night you prepare to sleep but then you think what if you’d get the sudden urge to pee? So you wait for another hour or two so that you don’t have to wake up and get up in bed half asleep, completely fatigued and pee in a container. Never ending calculations and planning become one of the two choices that you’re left with and this is the constant choice, the other one changes from time to time.

The days of staying out late, going out to play or enjoy, dressing up, styling, competing and all that are over now.

Now one has to be very careful with the choices one makes, you cannot simply waste them. Remembering the past feels like remembering a completely different person. But even after all this there is a strangeness in this smaller world, some sort of clarity. When choices narrow, the noise diminishes. One stops performing for others, stops worrying about appearances, starts being comfortable in one’s own skin and realises that the choices shrink but they are never zero. In those one or two choices one has to make a million small ones and learn to live with.

About the Author

Divyansh Negi writes about life in the in-between, between ability and limitation, independence and dependence, certainty and change. Living with muscular dystrophy, his work centers lived experience, reflecting on disability, mental health, and the search for meaning in everyday life. He is currently a Writer-in-Residence Fellow at Speaking Grey.