Tough Stuff.

When I was first in the hospital and could barely pronounce words, I had a catchphrase…”tough stuff”.  Now imagine a 17 year old girl saying it with a weird childish accent. Even funnier. But it’s a constant reminder of how strong I tried to get better originally. How much I tried to continue no matter how difficult it was. But the thing was, I wanted to get back into school. I thought my school life would not be affected at all, and boy was I wrong.

The courses changed. The content changed. The difficulty had to be lowered. An IEP had to be created.

Before I bore you with the list of changes, let’s just say there a lot of them. The number of courses had to be reduced and the difficulty had to be reduced. But it’s still not a walk in the park. My arms and legs aren’t reacting the same, my hands are harder to open into palms, my thinking and talking is slower, and the list goes on and on. Everything is just harder. Harder than write after my rehab. Harder to type, harder to concentrate, harder just to see, and the list goes on and on. It’s actually been getting harder after my rehab. I’m thinking and talking slower, my word fluency isn’t as good, my sensation on my right side is not as strong, and there’s probably more things that I forgot. Did I mention my memory is bad again? My vision is terrible, and I have difficulty focussing. Despite how hard I try, I can’t get my brain to adjust to this new lifestyle.

Recently, I noticed problems with my basic memory. Like in regular conversation I might have to think longer just to remember that person’s name. I still have difficulty remember the business course I ended up taking, and the title of the piece of Shakespeare I’m reading. (Before I forget again, it’s King Lear). I tried doing grade 11 math again, and couldn’t for the life of me remember how to do it. How to do factoring polynomials even though I learnt this last year?!!?! Originally, I had difficulty recognizing my emotions and dealing with it. Mainly because I was in such a sheltered area at Holland-Bloorview. I couldn’t be sad, everyone was so positive there! But here at school, I can find tons of other things to be sad about. How I only use about half of my school-day for learning and the rest of the time is used for myself trying to get caught up. How I have to stay back another year with all my friends graduating. And how even when I’m in school, I can’t do the things I love most like DECA, PSR, YWM, or band. It was supposed to be my best year. It’s ruined because of a tumour I can’t control.

I asked my parent’s this recently, “why do bad things happen to good people?”. And really, they don’t know. This was supposed to be my best year, but because of this tumour that I could’t control, it turns out that this is the hardest year. When all my friends graduate next year, who’s gonna be there for me any more? This is some depressing stuff, but it’s the truth that we don’t like. It’s really tempting to give up right now, but there’s something that keeps me trying. But that something is becoming more and more uncommon. This is really, really hard to deal with. I had such high expectations on myself, but having those all come crashing down and burning on me is not really part of my expectations for this year. Yes, this is depressing. Yes, this is hard to read, but the thing is that it’s even harder to deal with. Trying to accept your situation when it’s such a terrible one is not a simple task.

I know a lot of people are probably reading this (sorry for bumming you guys out), but I just want you to know that this isn’t easy for me either. This is a lot harder than I thought it was going to be, and I’m already used to things being hard normally. Before I had the ability to realize what I was going through, I was less sad because I always had the distraction of being in the hospital. Now I’m outside the hospital and a whole lot of sad. Seeing my friends suffer because of my suffering is hard. Seeing how people are trying to be nicer to me to make up for this is hard too. Hearing people say “President Huang” and calling other people PSR executive, YWM executive, and jazz band member is hard to deal with too. I don’t even know what my position in DECA is any more, I wasn’t even listed in the agenda as a PSR executive and that was printed before I was in the hospital (be it a lot of the names were written wrong anyway, but at least they were included). My parents are thankful I’m alive, but I don’t really see any positives right now. Maybe being alive is a good thing, but with all these limitations, I only see the restrictions facing me.

Today I got the chance to wear my DECA medals for the lipdub, and that’s when it occurred to me that I won’t get any more of those medals this year, possibly ever. That realization really hurts me. The club I helped build up and train, I can’t even really be a active member in any more. I feel like an outsider at most of the meetings I’m at, and I don’t see that ending any time soon. I can’t even go to the gym like a regular person any more. If I tried to go then people would be waiting for my spot and being impatient with all the waiting they have to do.

This is not a rant. This is a taste of reality. It’s a little bit of reality that I will try to show you as best as I can. Head injuries suck. All of us at Holland-Bloorview who were struggling can tell you that.

Tough Stuff. That’s the best way to put it really.

One time when I was in early recovery the surgeon asked me what I want to be when I grew up. Inspired by what they did for me, I said neurosurgeon. Today, I realize that might be a little bit of a challenge. Now I’m even more not sure of what I want to be.

Right now I am still wearing my DECA blazer and DECA t-shirt because it may be the only time I get to wear it this year.

I like to end most of my posts on a positive note. but this time I really can’t find one. It’s really not fair that me of all people would get a tumour. It’s not really fair for anyone to get a tumour. It’s not really fair for my grandparents to get cancer. These things happen. Whether we like it or not, we have to just deal with it.

Chant the words “tough stuff” and move on. That’s the best we can do right now,

What My Parents Do Right.

My parents aren’t always correct.  They may not be the most patient, most considerate, most kind,  or make the most popular decisions, but they are close to almost being always correct in at least some way.  Don’t get me wrong,  they aren’t perfect (not even close really),  they make the wrong judgement calls, they have a terrible attitude a lot of the time, and they have a bad case of the “if you  don’t listen to me  you’re wrong” syndrome.  Good thing they make the right decisions most of the time, or else I would never get a word in.

The thing about my parents is that they have an obligation to me (which they usually follow) to always point me to make the right decision,  and warn me about the bad decisions I’m about to make. I’m not really sure if I’m lucky or unlucky to have my parents, but I’m glad nonetheless.  Reasons including how much they care about me.  Even if it requires them telling me off or yelling at me, they still do whatever it takes to stop me from making bad decisions and ruining my life. Even though the things they tell me are correct don’t always end up being the ideal decision,  they also taught me to self-advocate and stop them when I think they are making the wrong decision. For example, when they didn’t want me to do volleyball or band in high school due to the possibility of the stress being too much for me to handle, I had the power to change that decision and work for their trust. It took me a lot of effort to convince them, but that’s part of their training for me as well. That’s partially why their annoyingness comes in handy. I carefully consider what they are saying and make a decision based on what they said. And because of this training, I’m a stronger person and have a better attitude because of it.

Don’t get me wrong,  they aren’t by any means flawless.  I have to be extra careful about what I say around them and be careful when I make comments about politics in the vicinity of my parents.  They like being correct.  Even when they are wrong, they don’t appreciate being told that directly. So basically,  they are like politicians.  They want to keep up a certain image, and even if you want to tell them something negative,  structure it so it’s packaged as a choice they make and do it in a private place. Kinda like speaking to your boss – leave their image spotless no matter what.

Even though it seems like a lot of steps to deal with my parents, they have been good training for the real world. Sometimes their words are harsh,  but I’ve been trained to deal with their harshness and accept the things they say. It can be difficult at times, but knowing it’s in my best interest, I can learn to accept it (slowly,  but surely). In many ways they’ve been really good training for the real world. Who knew two accountants could teach someone so much.

The best part about my parents are the comedy they have.  They tell jokes and use what they think is a funny attitude to make their points more entertaining. It works most of the time,  and even when it doesn’t, it’s still good that they attempted.

Although my parents can be jerks,  they’re my jerks.  No matter how terrible they feel like to you, they mean the best for you.  Even if it’s not always shown in the best way,  they’re likely why I’m here today surviving. And their lessons are also why I can make my own judgement calls and why I’m not a terrible person (I think). In today’s day and age, it’s so easy to end up being a shitty person. Thanks mom and dad,  I’m not a complete piece of crap.

Overwhelmed and Underwhelmed.

There was a lot of things that have happened, but not a lot of time to write about them. I had a lot of time to rethink about the various things that have happened to me, and I frankly think a lot of it is quite unfair. Uncontrollable, but still unfair. If I could have controlled it, I would not have wanted my grandma to get sick, my grandpa to die, and myself to get a tumour and the various other things that have went wrong this year. It’s been a hard year for me. I made a lot of revelations, and as I’m typing this, I realize that not everyone at my school will understand what I went through or care to understand. They are just students with their own lives and school work, and they may not have time to be keeping up with the posts I make. Truthfully, my closest friends don’t even check here. That messes with my mind. The people that I know and love don’t even take a bit of time from their day to keep up with my blog and others do. Of course, there are the people that read it every time I post and give me comments and encouragement, and the people that read it in private and maybe mention it to me that they’re reading it. I don’t know how much they read before they tell me “they’re reading it”, but either way, at least then I feel less alone knowing I’m not just talking to myself.

Yesterday, I first went downtown bright and early in the morning for an appointment at the hospital of which case I woke up for at 6 am, then we drove back to school and I stayed their until 6 pm for band. Coming back to a 12 hour day on the first day is not the best way to ease into it, but between the doctors lack of preparation and my own stubbornness to get through the day, I made it through. But at home, I crashed relatively early and woke up feeling emotional because it finally started to settle in.

It was settling in that not everyone cares about what’s happening to me. They are of course teenagers they have their own lives, teenagers can be a few things: hormonal, selfish, lazy, and narcissistic. Not to generalize teens as as being this way, but a large portion of teens are those words. Not a lot of them will try to be empathetic and put themselves in my shoes. The thing I’m most terrified about is if they start comparing me now and the old me. If all they can see is how I was before and they never cared to read my blog, then they really don’t know what has happened to me and how that has affected me. The fact that I may be slower at processing information, that I may take longer to write notes and understand them, that I may have difficulty speaking fluently, and a billion other things that I used to be able to do masterfully. And being back was like a wake-up call, it was a reminder that not all people care about what happened, they just see the surface. They just see the struggle in school, and the final products of the things I hand in. What I had to do to make that happen, and how much time I put into it, they have no idea. And sadly, most of them wouldn’t care.

The worst part probably is how much people didn’t seem to try to care. I wasn’t expecting hugs on every corner, but I expected people to at least care more that I’m back. People are good at liking my posts and being supportive online, but when I’m actually back, they don’t know how to deal with me any more. That’s the thing about social media, it gives you a false sense of how people really are. How much they care about you and how much they know can be easily disguised. Truthfully, I feel unmissed for the most part. Unless you were the few people that were close to be, my being gone didn’t really change much, and even if it did, I have been replaced.

To make it worse, they tell me that my original plans for school this year are completely changed. I was hoping I could get my advanced functions, biology, English, and musics done this year, but in truth, I’ll be doing the English, 2 musics, business leadership, and a GLE. Despite sounding more manageable, it’s disappointing to realize the fact that I have to take the courses I actually need later on. And depending on what I choose to take in university, I can imagine taking advanced functions, calculus and vectors, biology, chemistry, and whatever else at the same time next year will still be a struggle because I’ll still be recovering. I kinda always will be.

It may seem like little things to most people, but for a person that cares a lot about academics, extra-curriculars, and presentation skills particularly (I used to be good at them), I hate where I’m at right now. I hate that I can’t do things as quickly any more, I hate that I can’t play volleyball competitively any more, I hate that I can’t play my trombone parts completely, I hate that I can’t go to university next year, I hate that I can’t be a regular person any more – someone that goes through school like a normal person and goes on to university on a regular schedule. I never liked things out of the ordinary, but I have to get used to being out of the ordinary in order to be extraordinary.

I have accumulated a lot of hoodies and shirts from the various clubs I was a part of. And wearing them makes me feel like I’m still a part of them in an aspect, but on the other hand, reminds me of all the things I used to do when I was involved with them.  I was used to wearing myself out and not getting enough sleep. That was my schedule every day last year. I only feel normal doing that, but my body needs rest and I’m not very keen on giving it.

I have two days left in rehab. Then, I have to deal with school on my own. Even though I won’t have to wake up at 6:50 any more, I still don’t feel comfortable to be back in school yet. I don’t want to leave the safe haven that is Holland-Bloorview Kids Rehab. I really don’t. Particularly being in school and having the chance to plan out a schedule I’m not excited for but realize is necessary. And with all my friends graduating this year and leaving me behind, I don’t know how I would make new friends, or how I would deal with being “alone”.

To talk about more petty things, my hair is coming out in all different angles and lengths and unless I’m wearing my head band, you can see it looking ridiculous. So in addition to the more serious things, I have to wear a head band where ever I go and be sure it never falls off. That’s just great. Another thing to be worried about.

I usually end with something positive to make it feel less terrible. But honestly, I can’t find a way to make it less terrible this time. I just need to take time to accept the reality of it. My teacher said today that I have gained so much knowledge and experience from this and that I’m a very well-rounded person that will be successful no matter what. I feel like that could be true, but unless I keep trying, I could end up anywhere – somewhere bad or somewhere great. I just have to keep trying. Life has no guarantees, but you can always make your own insurance policies. If one plan fails, you always have a back-up one nearby. And although I didn’t prepare for this before, the people at Holland-Bloorview have done the best they can to prepare me for what’s to come. I’ll never be completely ready to go back, but it’s now or never.

Falling Behind.

I feel like I’m falling behind in everything I do. I don’t have a part-time job, I don’t have my driver’s license, I can’t start grade 12 until late October and I have to do an extra year, I don’t get to see my friends often, and I don’t get to go through the stress of the end of grade 12 (like finding scholarships and applying to university) with everyone else. Yes, I know stress isn’t good for my recovery, but I know I will find ways to stress myself out anyway.

Seeing teenagers working in different establishments make me sad. Even if it is in a supermarket, fast-food, or retail, at least they are working for their own money. Seeing people start driving and getting their licenses makes me feel disappointed in myself. If I had done this stuff earlier, I can at least have something to look forward to when I’m “back to normal” again. Don’t get me started about when people ask me about scholarships and universities, it’s like a constant reminder that I won’t be going to university next year and the amount of effort it will take for me to get accepted into one. This wasn’t part of my 5-year plan. Not even close.

Recently, I have a new catchphrase–“I don’t know.” Other than saying I don’t know to my therapists, I have a lot of I don’t knows in my mind too. For example, “I don’t know what to expect from myself academically any more”, “I don’t know if I can get into university”, “I don’t know if I can get a job and be in school at the same time”, “I don’t know if I can get my driver’s license soon”, “I don’t know how much I can help out around the house now”, “I don’t know if I can even make my own food any more”, “I don’t know how much longer will I be like this”, “I don’t know how much help I will need/get in school”, “I don’t know how much in grade 11 that I didn’t learn properly will affect me”, and “I don’t know if my friends will leave me after next year”. That’s a lot of I don’t knows, and there’s probably more that I have to think of. With all this unsurety, you can imagine I feel a little unsteady (in addition to actually being unsteady). I just don’t want to be left behind to a lonely and difficult last year. It’s not too much to ask is it? Apparently it is, my friends already are getting caught up in the work of grade 12 and aren’t coming over as often, and it’s so difficult to join in on the things I was in before again. It was stressful last year, I can’t imagine what it would be like this year.

The world still turns even if you aren’t changing. People still go on YLCC trips without you, DECA/PSR/YWM still goes on and have photo-shoots and do cool things even if you aren’t there, your friends still go to Popeye’s, Starbucks, and McDonald’s even if you aren’t there with them, and the band still practices, classes still go on as planned, and people still live their lives everyday even if you are there or not. This seems like common sense, but seeing the world continue even when you aren’t there with them seems kind of odd. You don’t really understand, but it feels like I’m dead and watching from heaven or something. I hear about what’s going on from my friends, but I can’t do anything about it, I can’t help out, and I definitely can’t participate.

My head right now is almost as messy as my room during exam season. My best friend is a stuffed puppet. And my room at Holland-Bloorview is as dry as a desert (the heat is so drying). Life may be less than normal, but I am trying my best to deal with it as sanely as possible. As the weeks go by, I grow impatient and cranky. I start to wonder about how others in the hospital are coping, or if they are doing fine and coping much better than I am. I wonder where they go between sessions and meals, and I realize they probably leave the hospital and go somewhere else. I’m not sure where, but I can imagine it’s probably better than staying at the hospital.

Recently, I read a piece of writing that my friend wrote. It was a lot better than my posts here (so I was a bit jealous), but it was about him finding out about me and how he’s coping with it too. It was quite thought-provoking and filled with emotions. The final sentence is “As long as she is a patient, I will be patient too.” And I thought that was a good way to think of it. Being a patient is about being patient. When you are in a hospital, there are a million things that can happen, and you can’t always plan and prepare for them. You just have to be patient. In order for it to be easier on yourself and others, you have to learn to cut others some slack and just be patient. It’s easy to get frustrated at a nurse or doctor, but you have to try to think on all fronts and all perspectives. You may be a patient, but you aren’t the centre of the world. Things like that make it easier to have patience while you wait for treatment and wait to get out of the hospital. It’s a good way to stay sane while waiting to get out.

But I’m scared to be out. I’m scared to be released into the world, not everyone will know what I’ve been through and they will have to make a 30-second judgement on me sometimes. From the outside I look normal, but on the inside this has made me a slower but stronger-willed person than before. My community resource leader said that “Time will be your new best friend” and I need it printed on a shirt or something. Yes, speed was my old best friend. Get through it fast and move onto the next thing, but now I can’t always go fast. so time will have to do. And I will just have to trust my friends that they will never “leave me behind” and try to make new friends next year; catch up with the other things later on. Slowly, but surely I’ll be up to speed with everyone else. I was always a speedy person, so I guess now I have to really slow things down and stop and just take a moment to myself and relax. Relax is not really what I’m good at,  but I will have to learn.

On my Facebook timeline, someone’s mom, I don’t know who (sorry for creeping, but my friends shared it), has brain cancer. I don’t know how it’s gonna be for her, but if it is anything like me, I wish her the best of luck in her recovery. She’s going to need all of it. Her’s is going to involve a lot more than mine has, but all brain surgeries have a lasting affect. No matter what the surgery is, there’s always a risk. I don’t know what’s harder, seeing a family member have a tumour or seeing someone go through it. I’ve been on both sides. It hasn’t been pretty on either side, but I’m not sure what’s worse. Be it, both sides are terrible (would not recommend to anyone), it’s a different type of pain on each side. Good luck to the family. Don’t be afraid to tell people about what’s going on, saying something really makes you feel better. Even if you don’t notice it at first, it really does.

It’s been a tough week of throwing up, diarrhoea, and in general not feeling well. At least that’s over now (I think), and I can get onto more important things like recovering.  With support from the cards and gifts I got from friends and my band-mates, next week will be even better. I can already feel it.