A brain arteriovenous malformation (AVM)

I had an AVM*, which is just a genetic defect; it’s like a tangle of arteries and veins, and it just happened to be cerebral for me. It could be anywhere in your body – but, no, cerebral. So it was leaking blood into my brain and they had to go in and cut it out. That’s why I have this bald spot on the side of my head. That was my second surgery.

It started on the day after New Year’s of my freshman year of high school, the week I was supposed to go back after winter break. I started getting really bad migraines. I just slept – I didn’t do anything. I don’t remember those days, really. I was just feeling weird; I was having double vision and reading was basically impossible. At one point, I got up, and I was like, ‘No! I’m all better now! I can do my homework!’ and my friend invited me to a movie; the Hobbit had just come out, and I really wanted to see it. I figured before I went to see a movie, I should probably go to the hospital to find out if I actually could see this movie. So I went to the ER and I was like, ‘I’m having a really bad migraine, can you, like, do anything to fix me?’ and they were like, ‘Um, this isn’t a migraine.’

So they put me in the MRI and we found out about the AVM. And honestly I’m so lucky that the practitioner who saw me knew what it was. I’ve talked to so many people who don’t know what AVM is. I’ve talked to EMTs who don’t know what it is, and I’ve talked to other doctors who don’t know what it is. And it just – I didn’t know what was goin down. So it wasn’t that bad for me, but, yeah. I got an MRI, and they were like, ‘Uh, yeah, you’re not good right now, so we’re gonna transfer you to another hospital.’ So then I went to Fairfax INOVA. I’m from Arlington, so it was only like a twenty minute drive. It was also January, so it was really dark outside. I remember sitting in the ambulance looking out the back window facing traffic, and I was like,

‘Oh, maybe there really is something wrong with me…’  and I remember crying. Not because I was getting surgery or anything, but because I was missing school.

And you didn’t get to see The Hobbit.

That’s true. I saw that months later – oh God, it was a while. But my friend was so nice. She held off watching it so she could see it with me for the first time. That meant a lot to me. When I got to Fairfax INOVA my mom was with me at the time. I was checked into the NICU*, and I was like, ‘I am not a baby right now. I am fourteen years old. What am I doing here, why do I have colorful cartoon characters all over my walls, but fine, whatever,’ but they actually took really good care of me; they didn’t place me any lower on their priority list just because I was older than the other patients. It was hard seeing, you know, babies, in the rooms next to me.  One of them was in an iron lung, and I was like, that’s, that’s a baby, I should not be here, I’m not this serious! But apparently I was. I was like, this isn’t good, that there are little babies on stretchers, and in incubators! I was like, holy shit. And my parents kept me pretty isolated from that. I didn’t see much that was happening on my floor because I was in my room the entire time. But it was really nice. I had a private hospital room!

Yeah, INOVA Fairfax is really nice.

Yeah. So I went there, I met my – oh my God my brain surgeon, he fucked up. My neurosurgeons, they showed my parents the wrong MRI at first, and they were like, ‘It’s pretty bad.’ And then they were like ‘Oh, no, no I’m sorry, this is the wrong one. This isn’t your daughter, your daughter isn’t going to die soon. Let me show you this one.’  And then they were like, ‘This is actually her MRI, and we can take care of this now.’ And I felt so bad for my parents. I was being told all this afterwards, because during it I was kinda, just, in a room, sitting on a bed, and I didn’t really know what was happening. I was like okay, I’ll chill here. Like, until somebody tells me what to do, I don’t know what’s in my best interest right now. So my neurosurgeons did that, and then a couple days later, they prep me for surgery. And my first one was non-invasive; they stuck a tube up my leg and through my brain to the places that were leaking blood.

But they fucked up again. They didn’t know I was allergic to morphine. And then they also didn’t realize that I had hydrocephalus, which is swelling of the brain. And so they just kinda.. left me, for a couple days, and I was just out of it. And then my mom had to go find a nurse and was like, ‘Yo, this is not right. My daughter should be responsive at this point,’ and it was three days later. She was like, ‘Something needs to be done.’ I just remember waking up with a drain in my head, to drain all the liquid that caused the swelling. It was like that old-timey dentist wrap, around my jaw, with the drain. I just remember waking up with that, then  going back to sleep or doing whatever. And the next time I woke up it wasn’t like that. It was normal.

I found out I was in the hospital for twelve days, which does not sound long at all, but when you lose track of time, you don’t really know what a day is. Like, it’s a while. Six of those were surgery, and the drain. So half of it I was pretty much out for – I don’t remember it. And when I woke up, I’m trying to remember, I think I had to go to PT that time because – well, it might have been the second time. But I got back and I went to school for a day – just a day.  It was so bad, Oh my God. I was like, what’s the point of me being here right now? I will be here for a day, then I have to go back to the hospital next week.

I went back to the hospital in early February, so this was like a two month long ordeal. On February seventh I got the surgery. It was a seven hour surgery, I think. I was flipped over on my side the entire time, so I was laying on my left side while they went into the right side of the back of my head. And I woke up after that, and they sorted out all the kinks and everything from the first time. They knew not to use morphine, they knew, like, how to deal with me. I have an incision from the top of my ear to the nape of my neck. That’s where they went in and drilled out part of my skull – it’s like, a really small part – and they took out the AVM and they put it back in. Now I have titanium pins holding it in place.

But that’s the surgery I really remember. I never remember having pain as bad as when I woke up after that surgery. Having all the blood pool in one side of your body is insane. You would think brain surgery would be so much worse than blood pooling, but no, it was the blood pooling.

I was only in the hospital for six days that time. That surgery caused me more aftermath. Like, I couldn’t walk in a straight line, I couldn’t touch my nose, I couldn’t see right. My brain swelled so much that it pushed my eyes forward in my head and I didn’t even need my glasses to see for, like, months afterwards. It was great. But I also couldn’t write. It’s not that I forgot how to or anything, but the coordination that it required just – wasn’t there. Then, after that, I wasn’t allowed to go upstairs by myself for a while. But I did anyway. Maybe not the smartest, but, I did. And there was some PT. It was mainly recovery for a while, but it was nice.

My grandpa came down to watch me during the day when my mom couldn’t be there. There was so much support from everybody, especially from my neighbors, from everybody who knew, really. My neighbors, somehow, they’re connected to the head of the hospital, the person who’s in charge of all the staff at INOVA,  and he came to visit me. He was basically like, ‘Hey, we’re gonna take good care of you. Don’t you worry.’ And then my Girl Scout troop leader knows that I love Tim Gunn, so she got Tim Gunn to sign and send one of his books to me. I know, right? I was like – you’re fucking amazing and I love you. When I got back home I got cards from some of my friends, and my neighbors all knew, and it was just amazing.

But people at school don’t know, really. I was talking to somebody last year and I just casually mentioned my surgery and he was like, ‘Wait, what are you talking about?’ I was like, you have gone to school with me for four years. You went to middle school with me too, so seven years. But he didn’t know. Like, I was out of school for two months -”

And to think that someone didn’t even notice…

“Yeah! He straight up just, like, didn’t notice, and I was like, okay. And low key we had just had winter break and we were just getting back to school, and having the kid who sat in front of me in English… that was a big one for me. My English teacher goes ‘Welcome back Audrey, it’s so great that you’re back,’ and the kid in front of me literally says ‘Who’s Audrey?’ And he turns around and I was like ‘hey, it’s me.’ Wow, to think… just to think. He’s also just a terrible person in general so I don’t hold it over him very much – he’s just so mean to people, I never liked him in the first place. But I think the people that mattered knew. I didn’t expect it to be a big deal. For me it wasn’t. I was more like, we’ll just go with the flow and see what happens kinda thing. I was just like yeah, we’re just gonna do what people tell me right now because I can’t really rely on myself in this situation. And that was really tough for me too because, like, I’m a very independent person. I do not like other people having to, like, wait for others –

Like having to be dependent on people?

Yeah. It just wasn’t going to get better on its own if I just waited it out, or something like that. But I think it helped me learn to be a little less independent maybe? Because you do have to recognize at times when you do, you know, need help. So it was a couple months before I could write again, but it’s all good now. We’re all good.

Did you find that your experience changed any of your relationships with people?

I think maybe it made me a little closer to my neighbors, if anything. Which is, like, I was never hugely close to them, but I was like, wow, they really do care. Even the ones I thought didn’t like my family.

Oh, actually, my stepmom. My stepmom never came to visit me when I was in the hospital. My dad was there a lot, my mom was there 24/7 – she helped me through that situation so much. But my stepmom never came to visit me. But I already knew – I’m not her child. So I’m not going to be her favorite or anything. But just the fact that she didn’t even come to say hey, I was just like… okay, this is real.

It sounds like it reveals people’s true colors.

Yeah, yeah, it did a little bit. And, like ever since then I haven’t been more distant towards her, but, I’m just not as invested in that relationship as much. I can understand that there were other reasons, but I feel like she could have made time. But, yeah, it’s good. I still see her. Still talk to her.

So looking back on it, was it four years ago now?

Yeah, four years.

Do you think this experience has shaped you in any way?

Probably.  I definitely bring it up a bit; t’s on my mind and I think about it every once in awhile. I think I definitely had some… issues, after my surgery. I think I was depressed and I didn’t realize it until I came here. Because here there’s such a strong emphasis on mental health and I think it’s great, honestly. I think more schools should have this strong of an emphasis on it. But this is also the kind of people William & Mary attracts, so it needs a stronger emphasis maybe. But I think  after it, maybe because of it, I went through some cycles of depression and I needed that to stop. But, no, it’s good. And I’m still independent, but I know when I need to be real with myself. Like, no, you can’t do this by yourself, you need to go get help.

Being in college now – a part-time adult, if you will – do you find it’s harder to go home and be subject to your parents’ rules?

Yeah, definitely. When I was home over summer break this year, or whatever, I know my mom said one thing and I just like went off. And I was like, this is just a result of living in this house with her or being in this family. This is just something that happens in my family. And it was the littlest thing, like, ‘Go unload the dishwasher,’ or something, and I was like, ‘Don’t tell me what to do, I will unload it on my own time, chill.’  And it was something so little that I shouldn’t have gotten mad about. But I did. I was like, don’t pretend that you can tell me what to do right now, but, you can tell me what to do right now, because I’m living in your house.

It’s gotten a little harder. But there’s also, like, other reasons why it’s difficult.

What are some of those other reasons, if  you wouldn’t mind sharing them?

My mom and I just always get in fights; little things will escalate into huge deals. I’m always like, why are we having this fight right now? What is going on?

Can you recall any time when that happened?

Oh, definitely. So, actually, this is funny. Well, not funny, but. So this fight actually started with her comforting me because I had gotten a parking ticket. I was like, ‘Mom, what do I do? Why do I keep messing up?’ Earlier that summer I had totaled my car, too.

But, anyways, I went to my mom and she was saying ‘It’s okay, honey, it’s all right.’ She was comforting me and then – I don’t even know how we switched topics, but then the subject of her having access to my student account came up, so she can pay bills and everything. And I told her, ‘Mom, that’s why you have a parent account,’ and she kept saying, ‘But I can only pay bills.’ I was like, ‘Mom, I don’t want you to have my account. Because then you can, like, register me for classes, or see all my grades, like – that is my entire life on campus right now. I don’t want you to have this.’ And it got so bad. We got into a screaming fight. We were screaming at each other – the dog was afraid of us, it was so loud. This all started with her in bed and me going to her for comfort and it ended in screaming. It was bad. But, the day after, we were fine. I was like, I don’t understand what happened here.

Oh, also, during that fight, she said something that was like, ‘Fine, if you don’t want me to have access to your student account, remove me from it all. I won’t pay for your college.’  And I was like, ‘Mom – I’ve already removed you from alerts and everything. You told me this last year too because we got in the same fight last year.’ And that just stopped her. She was like, ‘What do you mean? I’m never serious when I’m angry.’ And I was, just – I was so confused. So does that mean you’re never serious? Like, what is going on? If I’m angry and I say something, I mean it and I will follow up on it. If it’s something really really drastic, I won’t follow up on it, but if it’s something as simple as ‘remove me from this’ –

Like a direct command.

Right. I will follow up on that. And apparently she doesn’t. She doesn’t mean things when she’s angry. And that really confuses me. But it’s done now, it’s all good. We get in these fights, but there aren’t really any lasting consequences from them. I think I have a pretty good memory – I’ve been holding a grudge against my brother for the last five months, or something. I will bring it out again if you try to challenge me on something as clear as ‘remove me from everything’. When I fight verbally, I pull up that past; I bring things up again that mean something to me, but not necessarily to the other person. Nobody else in my family is like that and they all think I’m a dirty fighter, or something, but I’m like – you literally said this. Do you want to go back on your words?. If somebody remembers that, it meant something to them.

Do you feel like you always have to be defensive in your house if those little fights can pop up so easily?

I would definitely say that I am defensive in my house, which is one of the things my mom gets mad at me for. I remember going home for winter break last year and she said, ‘Audrey, I think we get in these little fights because you’re so defensive.’ And I was like, ‘What do you mean?’ I may be being defensive right now, but that’s not just something you casually say to your daughter. She was like, ‘You talk to me that way and I don’t like it.’ And I was like, ‘What do you mean? This is how I talk.’ I… this sounds very very cliche, but I walk really fast, and she walks really slow. She had surgery on her feet a couple years ago. But, because I just walk fast, she always says, ‘Why do you always run away from me? Do you not want to be seen with me?’ And I’m like, ‘Mom, no… this is just how I walk. You see me with friends. I walk at the same pace. I’m not going to naturally walk slower with you.’ I think there’s some things she just… doesn’t get about me.

Do you find yourself growing more distant from her as you get older?

No. I called her the other day like, freaking out about my major. Like ‘Mom, I’m freaking out about these things, I don’t think I’m good enough to do these things.’ Because it’s, like, math, and I suck at math. I hate it. I think I’m still gonna go through with it because I hate myself. Like, I don’t know why I’m doing this but it’s fine. It’s fine. I’ll just hate myself. And so I called her, freaking out, and I will still go to her with my issues.

 

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