As I sit here half in denial but beginning to grapple with a choice I don’t like, wondering if my lungs will ever again be up to a real hike in a beautiful natural place, to breathing in the marvels of this planet, and if the medicine I may take to try and halt the damage encroaching on my lungs will only further undermine the quality of my life, tie me to very regular blood testing, fear of infection, make it very hard to go, and do, and be, with freedom and vigor…
I see all that other people go and do and accomplish while they are being, and I look for some profound, meaningful, useful, or at least comforting perspective and insight, to help myself help myself. I feel like I have work that’s worth doing, writing-wise, and living that’s important to me to do, and joy I want to give, receive, experience, share. But of course it’s not super important to anyone but me.
I want to swallow a small bio-printer and have it print me new lungs. Or have the scleroderma relax its hold and my lungs stop getting worse, just stop here so I can still do things, even if I get out of breath and have to stop and rest while doing them.
I want to curl up and cry and have some great, beneficial love hold and hug me inside and out. I want to not feel so alone with this, and every decision and task that faces me. But I have felt alone since I was six and realized parents weren’t always there, were in fact quite absent, that nobody was or would always be there and no one was protecting me, and I am so used to feeling alone that it’s become hard for me to let anyone that far in, that close.
I am thankful for the cats, who cuddle up to my heart, purring, soft and warm, every day. I am thankful for my friends and loved ones, who are
there for me, I know, to whatever extent they are or can be. But it would be nice to have a person who was here for me in a more physical, pragmatic way.
I am afraid, and I don’t want to be alone.
I’ll be strong again, at some point, resilience is a thing—until it’s not, I guess.