I'll admit...

Usually, I don’t post anything that isn’t cloaked in some creative-writing style. Especially with blogging. I don’t want to be one of THOSE bloggers; you know, the ones who do nothing but whine? Usually I’m too arrogant to admit I’m human. Like really, truly human; the kind of human that every human is that likes—no, that needs—someone to at least know some things. I’ve been feeling human for a long time. In the Before times, I think, I wasn’t fully. Human, that is. It was like my ‘humanity’ was halfway out of my body, still on it’s way down from being created by God. Like He held it above me for a few years, so that I could live passionately and carefree, and love living life so much that I was hardly aware of myself at all. I was just this blissful Presence, laughing with friends or singing or riding my horses or drawing. But I am so, so human now, and I can’t deny it so I’m just going to say some stuff.

Today I’ll admit I’m falling apart. Not all at once; not a sudden crumble. More like the periodic crumble of a feeble but still-standing house.

I'll admit that I am scared shitless a lot of the time. I'm scared of not knowing how or if I will be able to have an independent future; whether I'll be able to finish school and live on my own and keep a job (let alone a career I'm passionate about, like I've always wanted). I'm scared what uncomfortable medical tests/procedures/treatments might be ahead. I'm scared that I'll never be healthy enough to have a serious relationship. I'm scared every time I leave my house, because I know that at some point my energy will drop and I will be stuck out and about, feeling so sick I can barely walk short distances and even riding in the car is difficult. I'm scared of having to live my entire life this way.

I’ll admit that I feel really, really alone, because living/dealing with lupus is a fresh, painful battle every day, but it is old news to everyone else. They treated it like the big deal it was when I was first diagnosed, but now most people have moved on. Because of the ‘old news’ thing and because for about a whole year now my emotional struggle with it has been exceptional, not many people take this ‘crisis’ of mine seriously anymore. They kind of blow it off, like it's just the angsty melancholy of some emo kid. Most don't really want to talk about it; I think they're bored with it now. And I don't blame them. I understand; I really do. I don't expect (or want) anyone to be always worrying or feeling sorry for me; I don't want pity or for people to treat me differently. It's just that it's been a while since some of the people I'm close to really wanted to know how I'm holding up these days. And it just sucks that it has to be this way.


It’s strange, knowing that my prime is behind me; that it has been behind me for five years now. In this way I feel as though I am forty, instead of twenty. I hear middle-aged women talking, complaining about aches and pains and lethargy; the disintegration of vigor and beauty. They laugh at themselves and each other, but I want to cry or break something because this is worse than forty; this illness is more debilitating than advancing age and I am not even close to forty. I am twenty, and I shouldn’t be this way; not yet. I should have had another thirty years before life lost its fullness; before every good moment was drained to only half-full of the joy it would have had if I was not constantly hounded by some symptom or another or five. I don’t even have the luxury of giving up. It’s like my shadow on a sunny day, this struggle is. It’s stuck to my heels. I jump but I fall back to it again; I run I run I run but it’s still so close behind me till I just collapse and it consumes me so there is no relief in the submission.

It puts a cap on my future. There are so many of my dreams that, without a miracle, I won’t be healthy enough to fulfill. I had high aspirations in the Before Times. My future was a well of opportunities; I could pursue any occupation I chose. I could afford to dream big: mission work in Africa, photography and journalism for National Geographic, a criminal investigative analyst for the FBI.Now everything is decided by practicalities; what I will be physically able to accomplish. Taking a shower wears me out. And I am supposed to finish college, find a job, then work enough to support myself? I don’t know what to do; I have no idea how I am going to manage and that is so scary.

I feel it every second of every minute of every hour of every day, some days much worse than others, but even on ‘good’ days it is very much there. I am good at faking it; at seeming like I feel better than I do. I am constantly pushing myself; nothing comes easily. I can laugh at a joke but my head is throbbing; I can carry on a smiling conversation while gripping the edge of a table or the back of a chair to keep from collapsing. Most of the time, I can drink from a glass of water without spilling it because of my shaking hands.
When anyone not so used to pushing on in spite of such feelings of sickness would cancel everything and stay in bed all day...I still get up on those days, and do what I have to. Because that is how I feel most of the time, if I am not feeling so ill that I truly, physically cannot do so much as shower. So I have no choice but to function if at all possible, because if I allowed myself the luxury of staying in bed whenever I felt like crap and it seemed the day would be a struggle to get through, I would never get up. So if I can, I make myself do things and squeeze what enjoyment I can out of them. Because, as hard as it is, it's harder to feel like crap AND watch the last of the possibly-salvageable shards of my life pass by.

Lots of people think it’s unbelievable; they think I can only feel as ill as I look. They think, “If you were really feeling that bad, you couldn’t act like you’re feeling better than you are.” But they haven’t spent the last five years practicing for the role, knowing that they’d better learn to deal with it because this is their life; this is their future. This is forever. There’s no escape, there’s no doing something to change the circumstances, there’s no hope of just waiting it out and getting my life back. Cause this is it now.

Yes, I'll admit that I am angry. Not at people, not at God. Just at 'the way things are'.

I know that God has a plan and that somehow, someday, He will fulfill me and show me how this is for the best.


I know that there are millions of people who have it WAY worse than I do, and that God has blessed me in so many ways. I haven't completely lost perspective; I know I have a lot to be very thankful for about my life, and that everyone has sucky things in their lives.

But sometimes I just need to admit that I'm not yet at peace with this part of mine.