(been sitting in the draft for months. with my uncle in the hospital this week. ended up thinking about this one a lot. all over the place. editing a bit from my phone. apologies for the typos)
I have a brother - a twin brother - with Cerebral Palsy. I never learned how to bring this fact up or talk about it deeply with people in my life - people who weren’t family and didn’t know my brother already. It always felt damn near impossible to explain the interiority of my relationship with E. - and to do so without eliciting what felt like pity. I always hated bringing it up. So often I resorted to silence - avoided questions about siblings or family because I didn’t want to broach the uncomfortable conversation of explaining my brother’s disability, seeing a mix of pitied & not-sure-what-to-say faces, and having to explain what it all ‘meant’ for my family.
As i get older though, i realize (of course) that much of this was internal - I didn’t know how to communicate my relationship with E. because i didn’t fully understand and have my hands around what the extent of my relationship with him was and what i wanted to be. Im trying to be better about it all.
Cerebral Palsy is a condition that primarily affects motor function caused by abnormal brain development. It can & does manifest in a range of ways in people.
E.’s motor function is pretty limited. Always has been. He can’t walk and talking is difficult. We mostly stick to yes or no questions. He’s a great listener, maybe the best i know. I’m 10 minutes older than him and I don’t let him forget it. He has the biggest heart but he’s a huge brat sometimes - and he gets away with it usually. I love him so much.
Just by the nature of it all, my relationship with E. has been dominated by care & responsibility. Some of my earliest memories from childhood are of helping Ma take care E. - carrying him from his wheelchair to the bed, helping him eat, drink, go to the bathroom. From an early age i was (in the back of my head) aware of the size of my responsibility to E - both in the present and in the future. My mother was quick to remind me (mostly when we fought) that “once Abbu & I are gone you have to take care of E.” I never liked hearing that.
Despite (or because) of this, as soon as I could I wanted to leave home. I went to school out of state, as far north from Houston as possible in these contingent United states. I moved out to SF and worked there for many years instead of listening to my moms pleas of finding a job back home. I shirked my responsibilities and felt like i needed to get out.
Over the last few years though E.’s health got worse. Doctor visits became weekly affairs instead of every few months. A flurry of surgeries followed. I began to expect the worse whenever I got a call from Ma at an odd hour. And as E. got older, my parents were becoming older too. E. was big now & still needed to be physically supported and carried often. Care is expensive. It was all seeming untenable.
At the beginning of 2022 i decided to move back home to Houston - to be closer to family, to help take care of E, to follow through, for once, on my responsibilities.
I’ve been thinking about responsibilities a lot these days - what we owe to the people we love and how much. How our responsibilities shape us and bind us together.
There are a lot of days where I wake up and think about how much I miss San Francisco and what I left behind, how challenging adjusting to Houston has been, how much I fight my parents, how difficult this all seems. But I’m also slowly learning that my responsibilities hold me together. So much of what I (begrudgingly) like about myself comes directly from E. & my parents. Things I’ve learned from them, things i’ve taught myself through them, things they’ve prepared me for - what they’ve given me and what i owe them.
It took me far too long to really contend with all of this - I’m still struggling with it all frankly. When i think about the past, some days i feel real guilty - guilt about avoiding what felt like a clear set of responsibilities to my loved ones for so long. Ashamed that i hadn’t wrestled with those responsibilities deeply, that i refused to not only talk about them but avoided them & ran away. Other days i feel indebted to my younger self who felt like his main responsibility was to himself - only if that taught me how deeply that world just wasn’t for me.
Mostly though - I used to feel very lonely about it all. That these responsibilities felt uniquely mine and mine alone to bear. But as i look around these days at so many people i’m close to - people who come from families where they are the first to step out, children of immigrants, black & brown kids trying to chart out their own course - I keep seeing the same thing: friends contending with how to merge their lives with their families and loved ones. Trying earnestly to hold their responsibilities & dreams to themselves and responsibilities to those closest to them. It feels unique & special to this particular moment to me.
How much of our lives are for ourselves versus for the people we love?
I've been trying to figure that shit out all year. It's been really difficult - I’ve messed up a bunch of times. But I suppose this is the nature of responsibilities - they aren't always easy and that's the point. Somedays I feel stretched to my limit, each responsibility pulling me in a different direction until there is no space left for me to pulled into. Somedays my responsibilities fill me up, that this is what I came here to do and here I am doing it. Most days I'm just trying to make it through.
“How much of our lives are for ourselves versus for the people we love?”
Mentally/emotionally plus my life experiences this question greatly resonated with me. I believe this question is ever so important due to the loss of so much the past few years. With continuous sacrifices and lofty expectations its feels criminal to be selfish with self care. Finding a healthy balance of selfishness in a time of life that demands selflessness is exhausting. Thank you for your words and honesty.