But not feeling ill. That’s the weirdest thing about PXE when you are 25. Most of the time, at that age, you don’t see side effects at all. Except the skin. I guess the skin thing must bother some people. I’m glad to say this cosmetic issue isn’t a bit one for me, because I think of myself as beautiful, or try to.
I’m currently undergoing a battery of tests. I had a colonoscopy last weekend. I had blood and urine tests the week before. I am undergoing an abdominal echography next week. I will have to schedule a cardiac echography as well. And I need to book tests with an ophtalmologist. It’s never ending.
I wake up in the morning and eat and go about my day like everyone. This illness feels like cheating. I know ill people who are very often bed ridden, or feel weak, or suffer from constant pain. It’s weird knowing my condition is a serious one, but that I don’t get to suffer physically, even mildly. Aside from occasional eye pain, that is.
I feel weird telling people I’ve got this illness that’s totally life-changing, and there I am in front of them, looking so healthy saying this. Someone with a cold looks sicker than I do.
It’s just strange. I feel strange. I’m a fake kind of healthy.
I’m grateful to feel healthy.
I just know inside that I’m not.
She is not “my girl.”
She belongs to herself, and to all of the world. And I am blessed, for with all her freedom, she still comes back to me, moment-to-moment, day-by-day, and night-by-night.
How much more blessed can I be?" - Avraham Chaim, Thoughts after The Alchemist (via avraham-chai)