mortality and the like

what 5 months of sterility looked like

I’ve just come out of a 5 month long hiatus in life. Came down with GBS and was diagnosed with autoimmune sfn amongst many other quirky problems my body decided to have. 5 months, most of which was spent in complete isolation, from the world, from my identity, from all ideas of normalcy.

5 months was sufficient to wipe the slate clean. I’ve been meaning to write my thoughts on this experience and the way it has come to shape me for awhile now. But it hasn’t settled just yet. Until now.

Having everything stripped away, down to my autonomy — what time to eat, what time to shower, the colour of my pee, the frequency of my bowel movement. I had no control of my environment, the people I saw each day. All constructs of what I knew to be “what life looked like” was shattered.

What was difficult to swallow, wasn’t how absolute it all seemed. What was difficult to take in, was the speed at which it happened. A gentle slope (the first couple of weeks), then downhill, all at once, like a trapdoor had opened up beneath me.

I lost my ability to walk, was told I could lose my ability to breathe, was seen by teams of specialists, only for each consult to be inconclusive. My life was reduced to one single moment — awaiting the doctors on their morning rounds, hanging on to each word they had to say, praying for the ones they didn’t. Every week, the doctors change. Every day I looked forward to when the sun rises, when the clock struck 10, when my curtain would be drawn. Eager, hoping for something to hold, something to make sense of what was going on with me.

Do you know what that pining could look like? All other hours of the day was dark, only those 10 minutes of the rounds, did I feel some semblance of sobriety, of clarity. With every investigation I was presented with the possible permanence of my condition, that my life as I had known it to be was to be an impossible dream.

The despair that consumed me across all waking hours was astounding. I couldn’t even bring myself to think: what now? Days turned into weeks, turned into months. My symptoms progressed, new diagnoses presented themselves. Just when I thought it was over, at the third month, I came down with something new altogether.

At this point I had thought I had experienced enough of loss. Having had lost my mobility, both in my hands and feet, my mental acuity had been stripped, my vision being impaired. Nothing prepared me for what came next, I lost my ability to eat. I had an acute gastroparesis flare, my intestines had slowed to a halt. Every morsel of food I ingested came back up.

In an environment as sterile as a hospital, where you’re reduced to simply being, your only connection to the world outside are the faces you see on your phone and the small window to your right, in this space food becomes a powerful and important anchor. Physiologically and mentally. I had derived happiness of obscene magnitudes from a simple comfort grab delivery order.

Now this too has been stripped away. I starved for weeks. Eventually recovering enough to tolerate a sole source nutrition formula. And even then I could only stomach a bottle — 200kcal. The mental hunger drove me over the edge. I recall clearly the week of starvation where I believe my body had hit its limits. The gnawing pains in my abdomen, the dryness of my skin, the frailty I felt in every fibre of my being. I barely produced any tears that night I cried myself to sleep. It was probably the most agonising experience I’ve had in my life.

And at its peak, as the sun filtered in signalling the start to a new day, I felt stillness wash over me. The mind had taken over, the body listened, and stopped protesting. This was the day I lost all physical signals of hunger. I no longer had hunger pangs, and food had ceased to entice me now that they’ve been associated with pain. Even smells made me gag.

It’s crazy what the mind can do to protect you. I think I now understand a little better what monks may have experienced putting themselves through voluntary starvation. I think I understand a little better what plenty of other individuals with lack of access to food may go through on a regular.

It wasn’t until I left the hospital for a month in home recovery did I begin to process the weight of the grief I held. I had lost all imaginations of the life I was once on track to lead. My longstanding philosophies and beliefs no longer applied to my new circumstances. One couldn’t possibly imagine to run if one could barely crawl, let alone walk.

My days have now been consumed by symptom management, anchored around pills. My activities limited by voluntary caretakers, my dreams bound to the edges of my screen. I needed radical acceptance and reform of my expectations. And in this process, rigorous distillation was required. How else could I take any semblance of shape, in this new form, in this new life?

I guess that was the best thing that came out of this. Directionally, my aspirations and preferences are now crystal clear. But everything else, I’m still figuring out. My life is still shrouded by appointments, procedures and tests. I am still actively managing the discomfort and pains caused by my afflictions.

The only way my mind has come to make sense of all of this would be to imagine myself having isekai-ed into this life. That i’ll have to learn all the world-building again. To foster all the past relationships again. To form a new connection to everything I’ve once loved. One that fits the individual born from this experience.

I am on the mend, thankfully. But I am certainly not the same. Not even close. I look forward to embodying this new life. In the meantime, I am grateful for this new lens in which I perceive this world. Each experience has come to feel novel again. I am gifted with the opportunity to curate and create my interactions with the world from scratch. Honestly, most of you should try it sometime… A physical-esque death is probably orders of magnitude more powerful than an ego led one. I had wished for this, in some sense. I had a burning desire for pause and a refresh. And that was exactly what I was gifted. Life works out friends… (be careful of what you wish for)

I’ll probably touch more on the mental and emotional developments in another piece. For now this is all I have juice for. Thank you for being here. <3