8th Lupus Birthday

I was born left-handed.

I am not entirely sure if that is something you are born with or something that you pick up from your surroundings so let’s just say I was born with it. I’ve lived my whole life with a left hand on my pen, on the ladle I use to cook, the spoon I use to eat, the chopsticks I learned to use, and the elastic that ties my hair. Even the foot I used to kick a ball during my brief stint of soccer-baseball in freshman year of high school was my left.

It was never really a problem. One of the times I remember it being annoying to me was when I’d bump my elbows with my right-handed seatmates—nearly the entire class—in Grades 1 to 2. By Grade 3, we already had separate armchairs. Another instance is whenever my mother would tease me while I’m cooking, saying I looked awkward holding whichever cooking utensil. It’s all just mundane memories and doesn’t really affect the way I live my life or how I see it.

Up until the hospitalizations, of course.

I’ve been hospitalized enough and have been through enough pulsing therapy (chemotherapy) to know that it’s standard protocol for hospitals to create the IV insertion site on your non-dominant hand. This makes sense, of course. It helps you navigate your surroundings despite being attached to a dextrose. But I’ve also been hospitalized enough to know that my right hand has the thinnest veins. There have been many times, especially in the past two years, that they’ve had to insert into a vein in my left hand.

This paralyzes me, especially when trapped in a hospital room and having to rely on my mother to bring me to the restroom or to bathe me or to change my clothes for me. I’ve felt helpless countless of times—it tends to happen when you carry an autoimmune illness—but nothing compares to the helplessness I feel whenever my left hand is out of commission.

Some days ago I was making gyoza for the first time. One small dumpling involves so much prep. I chopped vegetables for over an hour, to the point that the spots on my hands where my joints are have turned pinkish or red. They kinda hurt, too. The worst was the actual dumpling. Pleating the dumpling wrapper was already hard in itself but pleating with your left hand especially when most tutorials showed right-handed individuals was an entirely different bridge to cross. I even remarked to another left-handed friend that day, “We really live in a right-handed world.”

There’s a disconnect there from the rest of the world. A computer mouse is placed on the right side so I grew up using my right hand to navigate the web. The knobs that turn on stovetops are turned to the left. When left-handed people use their left hand to turn that switch, we’ll look weird and our shoulders will make all kinds of funky shapes just trying to turn one burner on.

There’s a disconnect from the rest of the world. An asymptomatic lupus patient navigates the world on the same pavements that healthy people do, looking normal, living normal, and yet there is a disconnect.

I definitely can run, but not as much as others do. I can stay out in the sun, but only briefly. I went through the motions of school and college and lived my life as a student as normally as I could, but it never played out the way others’ did. At one point, I was an officer and member of six student organizations in college just to compensate for this. I always lived my life trying to do what I want whenever I could and even sometimes beyond my limits, because I could never know if I would be able to do them again.

I was asymptomatic for a long time. It was easy to ignore my limits when I couldn’t see them. I pretended not to have them. I pretended so much that I almost died from it, in 2018. Now, two years later, I’m still spending the majority of my days recovering. But that’s a different story and it’s a story I’ve already told.

Today, May 21, I celebrate my 8^th lupus birthday. It’s been 8 years since my official diagnosis. I only remember this because I’m a serial documenter. A year after I was diagnosed, I found my 14-year-old self’s journal and I had written about the diagnosis. I don’t remember what I wrote (or I’ve repressed it), but I remember the date. Since then, I’ve always considered my diagnosis my second birthday.

I don’t always write a post during my lupus birthdays. I think I’ve only written one once before this. But every year, if my schedule permits, I go out to eat alone. Pesto buttered porkchops from The Brown Cup is my go-to but there were other places before I decided it was my permanent lupus birthday meal.

My parents first didn’t agree with this concept. I think they found out on my 4th lupus birthday, when I was well into college. I think it made them sad so I understood that. My sister and I explained to them the rationale behind it—it’s just me celebrating surviving another year.

A few days ago, when I announced my lupus birthday was near, my mother and my brother asked me why I don’t celebrate it with them, like you would a normal birthday.

In truth, I like celebrating it alone, treating myself to a meal alone, because it is still a lupus birthday. I don’t want the real birthday fanfare over celebrating my diagnosis with an illness that I’m still not sure I can be truly okay about. It’s already the 8^th year and the anger I feel still feels like it’s the first.

It’s a truth that’s hard to swallow. Every day is different for me. I never get to know what happens. This makes it harder to accept and each time something unexpected happens because of the lupus, I feel angry all over again. I never get to plan out my day ahead of time because once my kidneys decide out of nowhere that they’re tired and want to go to bed, I have to go to bed, too. This is particularly frustrating for me as someone who needs plans, as someone who’s so detailed with the way I spend my day. But I got to work around it, especially in college. I learned to take each day at a time, learned to troubleshoot whatever came. I even learned to schedule my rest.

I applied for a person with disability (PWD) ID card in the 7^th year. Just last year, a few months after turning 21. It’s a testament of my denial of it. But I see my ID as a symbol of me finally processing things and truly confronting what the lupus is to me: I have lupus. It is not just a mere nuisance in my life, no matter how much I try to separate myself from it or deny it.

But I am Claire Obejas.

In many ways, just like my PWD ID, my lupus birthday is just a symbol. Something I can look forward to for the first half of a year. I can at least look forward to my actual birthday in the second half.

The lupus birthday doesn’t really mean anything. It’s a made-up thing.

I still feel giddy anyway. Labels and names must mean something for someone like me, whose major love language is words of affirmation.

I need to celebrate as many things as I can while I am still able to. Even this entire write-up feels like something I should be doing for the 10^th year, but with lupus, I never get to guess if I’ll get there. I’ll just have to get there.

***

For my “birthday” wish, a tutorial on pleating gyoza would be nice.

Always,

Claire

The world made small.
Anda, Bohol. April 2017.

[Also found on Medium.]