on-going mostly unedited stream of thoughts


Lately I’ve been thinking about myself and my chronic conditions – I refuse to call them illnesses sometimes, maybe that is the problem – wondering what will I do or become if they are part of my permanent reality. After fighting with my body for what feels like a very long time, it feels like I should come to a point of acceptance. What if I started to think of myself as handicapped, or disabled?

The biggest disconnect for people, even for myself, is that I look fine. Chronic pain is mostly invisible. I find it difficult to explain why I think I am disabled: how can we think of me as able when I have a debilitating migraine at least once a month that seems to exhaust me for days before and after, and the days I don’t have a migraine I seem to be living with a permanent strain around my head. Some days I wake up as if I have a hangover, other days I can’t seem to get myself to do anything. Most days I feel uninterested in the world.

Maybe if I am lucky, I get around 1-10 good days in a month. During this period I become hopeful. I seem to be back to my old, curious, learning, competent self again. It feels like my body is allowing me to come up for air, to breathe for a while, if only to give me some glimpses of how my life can be if I were to be healthy.

Somedays I wonder if the good days are the reason for my depression. It is cruel to dangle hope right in front of me, and to take it away without rhyme or reason.

I no longer know if I am depressed because I am ill, or if I am ill because I am depressed. They feed each other, I guess.

I don’t know if it is good or bad, but I am starting to get used to this reality. I no longer believe recovery is possible, and it makes me think of how to manage and cope instead of always fighting for the impossible. I feel exhausted with the fighting.

I won’t lie. I regularly think that I might as well be dead. It seems like a cruel way to live, to have my most precious asset taken away from me – my capacity to think.

I try to think of silver linings, even if I know they are just self-spun narratives to give myself some comfort. I do believe that this has humbled me greatly, it has given me the time to examine myself and how I wish to live, even though I am disabled majority of the time I have found some moments in between to still try to create some work, work I probably would never have done if I was healthy because I’ll be too busy chasing my career ambitions.

Being disabled has made me think deeper about the meaning of life and what it means to be human. Because now I cannot be productive I have to confront the reality of the value of a life. Is my life worth living if I can’t produce or create? How do we maintain the dignity and self-worth of the disabled in this productivity-driven world?

Is it good enough, to just be a human being?

At the very least, I am still able to write. I don’t know what to do if even this is taken away from me. I comfort myself by telling myself the very least I can do while alive is to honestly document my experiences. Maybe a future anthropologist (if we survive this crazy time now) will find it interesting.

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