So there's this weird thing that happened when I was diagnosed: I threw what was possibly the second biggest tantrum of my life (first being when I thought my cat had gone missing. We found her.) I sat on the floor of my living room and SCREAMED, friends, SCREAMED for who knows how long, because my parents tried to explain to me that "chronic" meant I would ALWAYS have lupus.
Oh, wait, that's not a weird reaction at all.
The weird part came afterwards, when I proceed to Not Cry and basically Not Worry and Not Acknowledge my disease at all. I didn't tell anyone I had it and somehow because of that (?) it was almost like I didn't. Apart from the swollen joints and the chemo and the not seeing people outside of school. At all.
And then I look back and I think to myself "What the fuck." Because at some point my freshman year of college I just totally sank down onto my dorm room floor and melted into the ground like it was the first time I'd ever heard the word "chronic" before. I was in remission, I'd taken myself off plaquenil (I'll do a fun story about my tendency to boycott medicine later), but I had a sinus infection and my knees hurt. That wasn't the FIRST time I'd cried about my diagnosis since The Tantrum. The FIRST time was my junior year of high school when I discovered a girl in my grade had a strange tattoo that was just a string of numbers. I found out from a friend that it was the date of her remission from leukemia, which she'd had when we were in 8th grade.
I cried then because I can't ever get that tattoo.
Now I'm bored of detailing my crying life, so I am moving on to this weird bit of mind/body disconnect. Why is it that back when I was really sick, I was mostly happy? It's only recently, way into "remission" that I've started to tiptoe towards the whole despair thing.
Two thoughts? The obvious one: I was too young when I was first diagnosed to understand the full weight of the thing. It's like death, right? Kids that young have no concept of eternity. So even though I flipped my 9-year-old shit the FIRST time forever was brought up, it didn't REALLY occur to me that forever is forever.
The weirder thought. So long as I was hovering near rock bottom, I didn't have to accept what was happening to me, because it HAD to get better and we were all working to make it better. Even though I was in pain and had treatments and was lonely because I'd wandered away from all my friends, I still had something to fight against. This current state is a lot harder for me, because I worry that I may have to accept that this is as good as it's gonna get. My bloodwork isn't abnormal enough to justify my being on any medication, but I'm still tired and my knees still hurt and I can't make a fist till an hour after I wake up.
I feel like we are raised not to settle for "good enough" and so I can't seem to accept that this is where I'm at and may be where I'll stay. I've tried to eat healthier and get more exercise (I walk the two miles home from work most days) and (sometimes) get more sleep (though I have pretty epic-ass insomnia), but none of that makes a particularly noticeable difference in how I feel. Partially because I'm bad at sticking with it - it's easier to slump into fatigue than to pick myself out of it.
I wonder (does anyone know?) if we pay much attention to the psychology of kids with chronic disease. Because, evidently, it can fuck with your mind. I know there are psychologists who specialize in terminal children. But I was never taken to a therapist till my senior year of high school when I think it was a little late. That may not be due to lack of therapists, it may just be because my parents have always been convinced that I am freakishly sane. Pause for laughter.
Next time: Something uplifting and hilarious!
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