I realized as I was writing this that I have to explain some things for the rest of this to make sense, so I came back to the start. I have four siblings- an older sister, a little one, a little brother, Lime, and another, Red. Lime’s the older of the two. Those are not their real names.
We moved to the US in the fall of 2008, for a lot of reasons, most of which are not relevant, but I will say (relevant for later) that for the first few months I- as would the rest of my family- sigh and ask each other, why’d we come here again? We live with my uncle and his daughters, and my grandparents. Red was born in November.
And in December of 2008, Lime was diagnosed with cancer.
Edit: His treatment ended a year ago, yes. I say it later, but people keep reading that ^ and getting worried and I don’t wish worry on anyone, so I’m leaving a note here, too. Is he completely okay? No. He battled cancer. But he won, which is a miracle in and of itself.
I was not supposed to know when I did find out. Well, it wasn’t so much that I wasn’t supposed to know, it more so that I didn’t find out because someone told me, I found out because I heard it.
I was upstairs doing homework, and my mother had been worried and took Lime to the hospital. There had been a strange…poofiness….around his neck and cheeks for a long time, and she really wanted it checked out. She, my older sister, my little brother, they left with my uncle.
My mother came back that night, crying. Or no, she wasn’t crying, but she obviously had been, because her eyes were red and her nose was red and her voice was hoarse.
Stay up here, she told me and my cousins. And she took her phone, and with my grandmother and uncle, she went into the basement. I’d asked her where Lime and my sister were- she said they were at the hospital.
I was worried, and so after a while I crept to the door of the basement and listened. She’d been talking to someone on the phone, ended the call. Talked to my grandmother and uncle- their voices were just…basically…haunting. I still didn’t know a thing, by the way.
And then she called my grandfather. Crying, she asked him if he was sitting down. Then, to please sit down first, please. And then, when he must have, that he has cancer.
I haven’t ever forgotten that moment. Imagine a
14 12 (edit. I say this about ages later- this is what I mean. I was twelve, not fourteen) year old finding out her little brother has cancer, and not because someone told her. Keeping a straight face. I remember just standing there looking at the wall for a bit, how long I don’t remember. Walking back to where my cousins were sitting on the couch. They ask what happened. I said to not worry. And then I went upstairs.
I think that first month was probably the very worst for me, because I pretended I didn’t know, and in the process I would go over and over of the whole cycle of the stages of grief, in completely random patterns. And for that while I was angry, so, so angry, that it was something this important no one had told me. Which was what I did for a long time, just simmer.
It also made denial rather easy, by the way. And then one day on coming back from school my mother stopped the car in the garage and said he had cancer. And I was still angry. And I told them- her and my sister- that I knew, and had for a while. Mostly, I think, I was hurt, and I was tired of knowing for that long and not being able to do anything about it. They were surprised I knew, which I think just made me angrier. It is really hard to not notice when your little brother’s been hospitalized and there’s all sorts of medicines and things.
It made for a lesson too, though. I was angry, for myself, but on general principles I do figure out things extremely often, just by watching and listening. Sometimes people have accused me of knowing things about them or the state of their minds before they even realized it, and I’ve just smiled but yes, I have inklings. And I think it was an important lesson I had to learn. To wait, I mean. For people to be okay with telling me stuff when they felt like it. Because that’s important too.
But after that, that’s when things started coming out, with actual questions I finally could ask. He was diagnosed with lymphoblastic lymphoma, and it was in the latter parts of the third stage. There are four stages of cancer, and once you reach the fourth, that’s basically the end.
It was at that time that I stopped asking “Why are we here again?” because it was absolutely crucial, then, that we be here. It isn’t that he couldn’t have gotten treatment in Pakistan, or Burma. He could’ve. But here, it was a particular set of circumstances; it was that it is this hospital, this staff, this program.
The people who work at TCI (Tomorrow’s Children Institute) are absolutely amazing, and their support is amazing, and I don’t think we could have gone through what we did without them. And I love the fact that the treatment center is actually off the main hospital building, just a block away. I particularly love the Children’s lounges there, because they have them specifically, and they’re beautiful and big and bright. And the teen lounges, and that there would always be things you could find to do, events and ish, like their reminder that no, you’re not supposed to stop everything.
They can’t help you with everything though. There’s some things they don’t tell you.
Like watching your mom, who you’ve seen cry so few times, breaking into tears because she’s tired, and upset, and so, so stressed out. Of watching her and feeling small and helpless and broken because you can’t do anything except hug her silently, and tell her you love her.
Of waking up at three in the morning because he’s sick with a fever and vomiting and freaking out because he has a weak immune system, and then not being able to fall asleep, and then going to school tired. Of the days when he’s not in the house because he’s hospitalized, and mother’s here either because she’s with him. The hospital visits. In the hospital, not the off-site treatment center.
Or missing school, because of the hospitalizations. Or leaving school early. Or coming in late. And when people ask why, just saying to not worry about it.
Not crying. Definitely, positively, not crying, not crying, not crying. That was not something that was debatable for me- it was a natural, instinctual for me, when everything is broken, I cannot. Because I cared about the people around me too much, and I wanted them to be able to find help and support in me, and people have a general tendency to not ask help from people who’re broken, too. But I was, even when I pretended to not be, and I was numb and tired and all I wanted to do is be three again and throw a tantrum that it wasn’t fair and cry and have my father pick me up and murmur things until I calmed down and fell asleep. I remember doing that exactly once, at the very start, when I told my guidance counselor, and I screamed at her that no, this wasn’t supposed to happen, and people only have cancer in stories, and there was definitely something very wrong. She just looked at me very calmly until I finished screaming.
But I just- I wouldn’t cry, or have mental breakdowns. I’ve realized this is something I do, when terrible things happen, I just nod, and take a deep breath, and let myself sink into the chaos so I can begin to sort things out and out order again, because the mental breakdown is not going to fix anything. I can remember every instance over those years that I did cry, and why, and that I was alone. Definitely alone.
They don’t tell you that you’re going to become so familiar with medical terms it’s eerie. About radiation, and cancer, and a lot of medical procedures, they don’t tell you you’re going to spend your nights reading stuff about it so it’s slightly less a mystery, because the known is easier to handle than the unknown. They don’t tell you that you’re going to find yourself thinking “how do other people not know this?” when things about cancer come up in conversation and realize no, of course they don’t, and if your brother didn’t have cancer, neither would you.
They don’t tell you about the countless times you wish it were you, instead of them, or why they have to endure this. Or about how dreadfully panicked you get whenever something happens. Or how somehow, telling people how much they mean to you becomes a matter of extreme importance. Or asking random people you care about at random times if they’re okay. And being met with “yeah…why?” No reason. I just need to make sure you’re happy and safe and stuff like that.
They don’t tell you that birthdays will become silly and really irrelevant…at least, that’s what happened to me. I have never quite felt my age, and I particularly did not, and do not, anymore, and occasionally I’ll forget how old I am. It makes people very confused. It probably confuses me most. But there are very few days when I feel “my age”- whatever that is, anyway… most days I’m a newborn, curiously examining the world, troublesome, an old women, tired of the knowing, both, neither. It has, however, become a matter of great amusement for me to ask people how old they think me. (Usually it’s anything from 17-21)
And they don’t tell you that suddenly, your life is going to be conditioned by “Lime has cancer”, of being “the cancer family” or “that girl who’s brother has cancer”. Of people asking “how’s your brother?” before asking “how are you?” I didn’t mind that because he did have cancer, and so people were concerned, but it started becoming tiring. And a question I’d dread. Because people want to hear, and they want to be told he’s okay, and want to be reassured and fuck you, I am not here to make you feel better about yourself and leave me alone, yah?
So I wouldn’t tell people my brother had cancer. And I became insistent of making something of myself, so I threw myself into things as much as I pulled myself shut. Pulling away from people was easy, and I was generally the loner anyway, so it was perhaps natural, but even introverts need their friends, you know. I think that’s why I love Jess as much as I do. In the first year of high school she was in my History and Spanish classes, and she basically insisted on talking to me. She describes it as “wanting to know this crazy hijabi who read all the time” and I confess, rather embarrassed, that I was rude to her the first few times she talked to be, and very standoff-ish, but she put up with all of it. And she’s one of the most wonderful people I’ve ever have the privilege of meeting and getting to know.
But I had to have order somewhere. So it began, the whole role-model-student persona, the straight As- yes, this is where it started. Of being in the Environmental Club. Of the volunteer hours. Of taking summer courses in math- partly because I’d already been doing advanced math in Burma and the pre-algebra courses were boring me to death and I wanted to move up, and partly because I needed something to focus on, to push myself. I think it did help my mother in part, too. Of having something else to focus on.
I will say this, and it will probably sound extremely self centered and bratty, and people will probably think oh, I’m making things about myself, but people tend to overlook the siblings and families of people with cancer. They do. I became defined by “the sister of Lime, who has cancer” rather than me, which may have to do with why I pushed myself into so many things right, I needed to have a name for myself. And then I immediately felt selfish for doing so, but this has taken me a long, long time to come to terms with. People generally pay attention to the stories of people with cancer. But their families have stories too. And they’re also important. And people will forget this. And we will forget this. We’ll start thinking ourselves unimportant, too, but only because whoever we know has cancer, we love them so much, and they’re going through so much pain, how could they not be important?
It took me to go to Camp Dream Street (which, may I add, is amazing) to come to terms with this. The first year I was a camper. Officially. And it was Ramadan, and I was fasting, so I was allowed to sit out most of the activities because they involved physical exertion and that would make me tired and then I’d want to drink and I couldn’t. So I was allowed to stay in the arts room. All day. Or almost. It was pretty amazing.
Yes, I totally indulged myself with the projects, and I had an amazing time. But there would, periodically, be other kids who’d come in, and I’d say I had more fun helping them. Like when a little boy came in, and he wanted to put together a frog. One of those wooden things, you know, that you punch out, and then you have to get A1 with A1 on another piece, and A2 with A2 on another, except this was complicated and had all these steps and things. Artist, which is what we called the lady who was in charge of the room, because she told us to, had asked me if I could figure it out because she was bad at it and it turned out, I was. That was pretty sweet.
And then the boy, he goes and proudly shows off his frog to his friends, and then they all want their own and they’re four and can’t assemble theirs so they asked me to help and I don’t care what people say, but I absolutely love to help people, there’s just this warm feeling that sinks all through you. Particularly children.
Before camp ended I asked the director if the next year I could just come in as a volunteer and stay in the arts room all day and help kids. She said yes. Actually, she said I was about three years younger than the kids she let volunteer at camp, but I was one of the most mature kids she’d ever met, so yes. (I was…thirteen? Soon to be fourteen. Usually you have to be sixteen.) I was ecstatic. Turned out though, that the next year they had a lot more kids and needed more counselors so she asked me if I was willing to be a counselor, and I said yes, and I am officially the youngest counselor to volunteer there.
There are some of the loveliest kids there. Ever. Camp Dream Street is for kids with cancer and blood disorder- and their siblings. Emphasis on siblings, because there were a lot of them there. A lot of emphasis, because, how do I put it? They’re usually the forgotten kids, paled in comparison to their sibling with cancer. But not here. At least, not for me, and they were important, all of them, and their story was important, and it was this realization that got me to accept that mine was, too.
They are also ridiculously energetic. I mean, people have this preconceived notion of kids with cancer and blood disorders being these tired, sick, unhappy kids all the time, and yes, they are, because they’re sick and tired, but they’re also some of the most cheerful and loving- and inspiring- kids ever. Both those kids and their siblings, they have this… knowing in their eyes I’ve not seen in any other kids, and kids are actually pretty smart. But they know. They know pain. And being tired, and worried, and sick, and they’ve learned to make the most of everything anyway. And I get that, yes.
The other thing was going to a forum about life after the treatment is over, and then right in the middle of it, there was a presentation, and there was a line directed to cancer survivors- “It’s not just about you.”
And it just hit me really hard, and that was when I started crying. Because almost no one had acknowledged this, that the family matters, too. Or that for all that a lot of survivors, they don’t remember but thing is, we do. We remember every bit, the good parts and the bad, the tiredness, and the worrying, and the hospitalizations, everything.
My brother’s treatment ended two years after it began. In December/January of 2010/2011. But for all that his treatment’s done…it’s not over. There’s the check-ups every month or so, and I only finally realized this recently, it never really ends. It’s just become a part of my life.
And so will be all the people I’ve met. And their stories. Their stories are part of me now, too.
There is this family in particular, who’re black, where one kid has a particular blood disorder that is common among Africans because of the genetic makeup. I’m being vague for reasons of their privacy, but this story is important. They told us they moved here from another state in the US, and that before she was born, the doctors wanted to abort her. And the family heard from another who’d child had been aborted, without permission- the doctors had said they’d wanted “to help” and has to do some form of surgery…and well.
And so they fled. Literally. They moved. Disease or not, it was their kid, and they wanted her.
This story is actually what made two things particularly clear to me. First, the blatant racism in the US, even so much as to disregard the opinion of parents and just to abort their child without their permission. The other, ironically enough, was to be pro-choice. I mean, people are always confused by this, wouldn’t I not be, then? No. It was the parents’ choice to keep their kid. That is what mattered. And think about it, if they hadn’t wanted her, and abortion wasn’t a choice, then there would be a kid with a severe blood disorder that would require serious medical attention and would most likely be neglected.
There are people who tell me, oh, this is all horrible, I guess you wish none of this hadn’t happened… but no. I’m would not “undo” anything. Each and every thing is important to the person I am now, and despite all the pain… I needed it, in a way, to become who I am. I need it all. The bad parts, to teach me strength. The good parts, to teach me about happiness. And hope. And about how there will always be goodness when you least expect it. I learned to not take things for granted. And to laugh. It’s funny how the people who’re something in most pain laugh the most, too. There was something I read once, about how the people who need to endure the most are also made the people who find happiness in the littlest of things, and this is true. I deal with a lot of things using humor. Usually joke about things with my sister, because she gets it best. We can get extremely dark in our humor at times.
Oh, and that. There is a difference between dark humor, and being disrespectful by making a joke of something that is serious. So sometimes when I get angry, people tell me to chill, and it’s dark humor. No, it is not dark humor, and you are just an asshole.
I learned about how it feels to love people to the point where your heart would just break because it becomes so, so overwhelming. And to tell them. That’s a hard part, because I have a tendency to not tell people my feelings. But after all that, it became a point of if something happened to them, or me, and I didn’t tell them how much they mean to me I’d never forgive myself. But I never mean it lightly when I tell people I love them.
So now on random moments I’ll go over to my little brothers and just hug them really, really hard and say “I love you” and they’ll just yell “Let me goooo” because they were playing and want me to stop bothering them and I laugh.
I’m a sucky sister sometimes, and I know this, but I still love them to pieces. And Lime, if I could, I would endure all he did, if I could, and it kills me to see him go through all that. The medicines. Radiation. Feeling sick and tired and having hair fall out.
I hated needles, by the way, and blood. The sight of them made me nauseous. But during his treatment there would be times I would have to hold his arm down so he wouldn’t squirm and scream so they could take blood samples. And I did, too, I would look him in the eye and hold down his arm and tell him shh, it’s okay. I still don’t know how I did. And I still hate them, but I can clench my teeth and look at them and just deal with it. Or make myself.
When I read My Sister’s Keeper…that was one of the few times during then that I cried. But I did. For a long time, while reading it, and at the end, that book completely and utterly ripped me apart. Because Anna, the things she was feeling, I completely and totally understood everything. I didn’t watch the movie. And don’t think I will, because they changed it, and I don’t trust them to have saved the book for how amazing it is.
This is really long, isn’t it? But it isn’t even the whole story. Just a small silver. And yet, it’s this long, and I took over a month to write it, because I had to keep leaving it, because it was so mentally tiring I couldn’t take it. And I haven’t read it over, or edited it, and I don’t think right now that I could. So if it has grammatical and spelling mistakes I’m sorry. It probably does.
But in the end, chin up yo. You, whoever’s reading this, you’re important too, whatever your story is. And for however ridiculous it sounds right now- and I know it does- but yes, it does get better. When does it? I don’t know. But if you need, I’ll be there through it for you, if you need me. I sincerely mean this. I wish you the best of luck, and hope things work out for you.
And if you actually read all of this, thank you.