It’s past 6 am now and I still haven’t gone to sleep even though I doubled my dose of sedatives earlier. The wind has picked up outside so there is a somewhat consistent crossover between the lull of an early fall morning and the individual gusts that sound sort of like waves if you imagine yourself on the seaside. There are other noises too. The growl of my now empty stomach after a night of being sick, my heart beating a little too fast for comfort and the creaking of the house as it adjusts to the cold.
Tonight. Today? This morning, existing in the way that I do now feels heavy and impossible. There’s been a death amongst my online community of illness fighters; another life taken far too soon. I find my mind wandering towards where I am headed, but I have to stop myself. On Thursday my doctors looked at me with the saddest of eyes. “Things are progressing much more quickly than we had thought,” was what they said before they went on to teach me how to use catheters on my own. They went on to explain that the repetitive infections I’ve been dealing with have been due to my failing muscles, just a small part of the neuromuscular failure that my body is becoming. Through all of this I felt level headed. After all, this was just another step. A nurse came in with a tote filled with samples and stumbled over her words as she attempted an apology. Such a shame that you have to do this at such a young age. I had never felt ashamed of my body’s self destruction until then. I kept it quiet for days before telling anyone.
The thing is, everything about my life that once felt certain no longer does. The path, the people, the existence. My illness mocks me like a bad fucking friend. It robs me of my dignity, my hair, my dreams, my choices. I no longer have control over even the simplest of things. I will most likely be late or even unable to even make it to that birthday party I RSVPed to. I have become the flakiest friend you know except you can’t even blame me. It’s not even my fault. Sometimes I feel guilty for this, other times I don’t.
I am a host to a demolition derby of cells leaving behind a wake of failing organs and nerves. I have to stay positive, keep on moving forward. I cannot stop and it’s utterly exhausting. My bed has become both my favorite place to seek refuge and my least favorite place to be swallowed whole by the abyss that is living life with a giant question mark attached to it. The emotional toll, it seems, has begun to catch up to its physical counterpart. And while I thought that I understood that I truly wouldn’t get better, I am learning that I have absolutely no clue.