Silence is Golden.

One time at the annual Jackson’s Point Band Camp, one of the guest conductors would tell us to be silent, so we could listen in on the others in the band and listen in on life in general. “Silence is a beautiful sound”, they said. If you want to do well in performances, you must learn to understand the beauty of silence.

At the Ontario Band Association Festival, one of our pieces this year was “Solas Ane”, a very gentle piece that required perfect silence before we start. For the moment right before it began, the silence we practiced was useful. We were so perfectly silent that we could hear the breeze come in from the opened doors, and the shifting of papers and clothing in the audience. We were practicing silence.

Silence is a truly beautiful thing. I was watching a documentary a while back that said the “white noise” we may think is meaningless can negatively affect the development of babies as they are conditioned to think that this “white noise” means something. White noise can be comforting as get older – the gentle sounds of the A/C running in the background, the fans cooling us down, and the droned out sounds of the TV or radio that my parents are listening to all make me feel like I am with people; that I am in the right place. I am surrounded by something rather than nothingness. These little sounds and how we react to them may represent who we are when someone is looking, but the way complete silence affects us is representative of who we really are.

True silence is almost impossible to find nowadays. I guess that’s why we as humans are afraid or fascinated by it. To experience true silence you have to be 1. Alone, 2. Somewhere completely quiet with no A/C sounds or breeze or animals and 3. Willing to stay perfectly still. The ability to have all of these 3 things aligned at once is a rare thing, like waiting for the stars to perfectly align. Now, the closest thing we get on a regular basis is putting in your earphones and sitting alone in a café – that’s today’s silence.

Today’s silence is a great thing. It helps you concentrate, get yourself into a new mood, and even create a whole new little reality within your own jam session. Yes, who doesn’t want that?

Real silence gets you to concentrate on the silence itself. It can be frightening, and makes you realize that in that moment, you are truly alone. Frightening? Yes. Calming? Yes. A weird mixture of both? Definitely. Maybe silence just affects me this way, or maybe you are just not experiencing real silence.

I only ever really experience silence a few times…

In nature – Sometimes I find myself walking alone on a certain path or certain place that seems to be completely silent like a forest or park. This type of silence is relaxing. It reminds us that we don’t have to always be surrounded by stressors; it’s okay to be alone.

In the water – Sometimes, when I go swimming, I put my head in the pool and it feels like I’m alone. There may be others around me, but when I close my eyes (to not get chlorine pool water in my eyes) and not move an inch, I feel like I’m in silence. I may be surrounded by people like my campers I’m looking after, but for those brief seconds I’m in the water, I feel calm. I feel collected. I feel like I can conquer the world as I forget the problems in the world within the silence.

In the hospital – Sometimes, I find myself in complete silence in the hospital. Either at night when I was in the ICU and the nurse has just gone on break and I wake up. Maybe the silence wakes me up because it has become so darn loud. It pierces my ears hearing that silence; knowing that I am alone in the hospital, or anywhere else. Another place where I feel this dreaded silence is right before a MRI when they give you earplugs. The moments after the door slams behind the technician’s back and you are completely still in the machine with a metal cage around your head and earplugs in your ears, those few moments before the technician tells you you’re about to begin are the worse. Sometimes, I can’t handle this silence and rustle my feet. Those moments of silence are not calming. They don’t make me feel empowered, that make me feel little. They make me feel powerless.

 

You can also be brought into silence by others.

It was silent when I found out about my grandmother’s cancer.

It was silent when I found out about my grandfather’s cancer and his passing.

It was silent when I found out about my own tumour.

It was silent when I was browsing social media and found out about other people’s cancer and their bravery in coping with it as well.

 

I guess it depends on the context of the silence. When it’s a beautiful background, silence makes me relaxed. It makes me almost excited. It’s the few moments in time where I forget about the world and can truly “do me”. It is a nice contrast to the busy and in a way “loud” life I live. But when it’s a dark background or depressing situation, silence represents my fears. It takes away my power. It’s the hollowness within me.

Silence is beautiful. Silence can represent so many emotions because it is reflective of your own emotions. Silence is who you are, and since everyone is beautiful, silence is beautiful as well.

 

Brighter Days.

The featured image for this is a picture of my view of the sunrise in the hospital after I was taken out of ICU and into the regular rooms. Gone were the days of the hourly questions of “what’s your name?”, and “where are you?, but they were still asked every couple of hours. Here I was in a shared room with another girl. An older girl, not much older, but still older. Barely older than me and pregnant with her second child and in for a shunt change that she had first implanted when she was a baby and replaced once picking up her first child. Before her, there was an older lady in the bed beside me that was in for something not as serious as days have passed and no surgery done. Before long she was taken out of the room and told to go home as the surgery would not be happening any time soon.

The interesting part about being in a hospital room is hearing the stories behind these people. Hearing their background and being able to connect to them in some way. There were many others that I encountered more briefly, but each had changed me in some little way. Together, with the month of two I spent in rehab, was the most enlightening experience I’ve ever had. There’s just some things you can’t learn from a teacher or a classroom – you have to experience it first hand. You can’t understand that pain of being hit until you’ve been hit. It’s like someone trying to describe the level of spice in a food, it affects people differently.

I remember when I was in the four person rooms with constant nurse watch before I went into surgery, they had hourly checkups where I would answer the silly questions like where I am, what day is it, etc. I waited for around 5 days before I had my surgery. Spending time playing UNO with my parents, walking around the floor for exercises, and eating hospital food for way longer than I probably needed to, the days passed by relatively quickly as I tried not to think about the surgery too much. I didn’t do any research into it… Mostly because I didn’t want to know. The horrors of what could happen was too much for me to risk knowing. So I was best going in knowing as little as possible but understand the risks. There were times I has to fast in case I went into surgery, but when I could eat (I still couldn’t leave the hospital), my parents brought me takeout from a nearby restaurant recommended by one of the nurses – Fran’s it was called. They had great food. Comfort food – just what I needed.

When I look back, there’s a million ways that this experience was bad, but there are ways they were good.
1. I had amazing support from everyone I had the pleasure of working with and meeting.
2. I had the chance to relax and rethink what I wanted to do with my life, and the way I look at things.
3. I had time to try new things, discover myself, and explore new places and new foods. Open my mind and open my eyes to a whole new world.
4. Probably more things that I forget… Sorry bad memory.

My main point of this post is that the sunrise in the picture represents my bright tomorrow. So bright after my surgery (I was hypersensitive to light for a long while) that I had to wear sunglasses even though the shade was pulled down…
I digress, this surgery made me see things in a new light (literally and figuratively). It’s too early for me to be sad about everything – as I was before any of this happened. Some people have bigger problems that they deal with early on, as I had to deal with the idea of having a tumour and going through surgery. What if I never recovered and lived the rest of my life the same as I was the first day after my surgery? Unable to move; unable to speak. Aware of everything around me, but unable to contribute anything. Having such terrible pain everyday that I needed extra strength painkillers equivalent to morphine. It’s terrifying for a the 2 weeks I had these symptoms in ICU, it’s unbearable to think about having it for a lifetime.

When I was first recovering, some of the worst things were not being able to move of course, feeling immense pain and nausea in ICU, and  not being able to do basic math or remember anything, but little things as well like not being able to sleep on the side as it would hurt my skull or being constantly dizzy and nauseated even after. Worst of all, was the fear that I may never get better and I would stay this way forever. Never being able to accomplish anymore greatness, and only being remembered for braving this surgery and losing who I was as a person. Is my self-worth solely found in the things I’ve done and accomplished? Or is it based on who I made myself to be? Some of both? I’m not sure, but I knew if I somehow lost my ability to communicate, I would lose myself. Which is probably the scariest thing of all.

The thing that angered me about my second roommate was that she got easily frustrated. Maybe it was because she was pregnant, but the lack of appreciation in her actions and words ticked me off. But I tried to think in her position, she’s had to deal with this as a baby, after her first child, and she’s having to deal with it again? Maybe I would be like her too if I’m having surgery for at least third time. I don’t know how I would react. But I best not judge. Everyone is unique in their struggles and the way they cope. 

One thing that I hope to believe is that no matter what, there’s going to be better days. Maybe that’s a bit of my inner optimist shining out of my pessimistic outer shell, but that’s what I’ve been working on believing in.

So put on your shades and look into the sunrise outside your window, you’re in for a bright future.

“You are a Miracle.”

Today (when I first started this), I went to see my neurosurgeon. Before my appointment with him, he had his student come in to talk to me and ask me a few questions. I answered them as I have done so many times now – missing some parts of the story, but always being prompted to give the missing information after. She did the regular vision tests and some of the familiar memory and cognition tests. Tests that they say are supposed to be odd for most, but are actually incredibly regular for me as I have done similar ones a million times at rehab.

When he finally came in to see me, after the regular questions he asks about how I am doing, I asked the question of when I can start to drive again. He said a year and emphasized that I need to take my time.

Take.
My.
Time.

I don’t understand taking my time.  I understand GO-GO-GO!

Go. Go. Go. Go. GO. GOO. GOOO.

I told him my most recent marks.
It seems as though I am a machine. Spitting out 99s and 100s, with my only low mark being English at a low-mid 80. To most, this is amazing. But I am only taking 5 courses. All the “easy courses”, and I have no idea if I can continue to maintain this. The last quiz I did today for business leadership, I forgot basic ideas on the topic just 2 hours after my quiz. When I was putting away my notes, I couldn’t remember some of the information on my own notes. That was shocking to me. How do I expect to be able to pursue university when I cannot even remember things from one period ago?

If I still want to pursue either business or psych/neuroscience/mental health studies, I will have to study biology and chemistry in addition to the two maths next year. Which he then recommended I take only the courses I need to. Of which, are all difficult courses which memory is important-if not vital in.

My mom and dad seemed to agree. They tend to trust the surgeon’s “professional” advice.

But this professional advice lacks in the personal component. He may know the inside of my skull, but he doesn’t know me – how my personality is, what my goals and aspirations are. AKA who I am as a person.

I try to show this side of this every time I meet anyone, but even still, parts of it are missing from the brief moments in my hospitalization that I’ve met with him. The people from rehab that I spent more time with don’t know all of me either, but they have a better idea. They had a more personal connection/role in my life. He doesn’t understand that cutting out all other aspects of my life is not making it easier for me, but it will make life more flat and boring. Having some courses that I enjoy will make it easier to wake up in the morning, and stay on track with completing the rest of my workload.

I will have a purpose.

My surgeon recommended me to the foundation (the people in charge of generating funds and attention) for the hospital. He said they were asking for “miracle” stories and my surgeon suggested me. I told one of my other friends about this, and when my English teacher used the word “miracle” one day to describe one of the characters in the novel we’re reading, I looked back at him and he smiled acknowledging the irony.

My surgeon thinks of me as a “miracle” as there are people who underwent a similar surgery as me suffering from permanent damages that are a lot worse than mine. Some are paralyzed or partially paralyzed (like I was briefly), some will never be able to speak again or at least speak with extraordinary difficulty (again, like I was briefly), and in some rare cases, they didn’t survive the surgery. So, I guess the fact that I am even remotely normal/average now is in fact a “miracle”.  My ability to regain skills and have hope is miraculous. My perseverance and determination through all of this is miraculous.

I don’t think of myself as a miracle often, but I can see why people may see me as an inspiration or miracle at times. Most people, still see me as the “Cakz or JC” they always knew.

I’m not sure if I’ve said this before, but when my neurosurgeon first asked me (when I was still in the ICU and unable to speak or think completely normally) what I wanted to be later on in life, I said “neurosurgeon” (haha). I don’t think I can ever be a neurosurgeon, but I may end up being a neurologist or neurobiologist or psychologist or whatever I want to be. I just have to wait and see, and once again, never “lose hope” and always maintain my “perseverance and determination”.  I think my exceptional insight will aid me in my struggles as I will be able to pinpoint where my problems and where my strengths are.

What I did learn from this was that…

  1. My most recent scan is almost normal. There’s still a lot of scar tissue which makes it unclear what is scarring and what could be a new growth.
  2. I have an abnormal patellar reflex (hyperreflexia), meaning I need to warn the doctors who will deliver my future baby (if I ever get married or have kids) that I have this problem because of my brain surgery. (I just imagine one of them being kicked in the face by me *haha*)

 

3. And that I am…a miracle.

If I could be a miracle once, I can be a miracle again.

From dealing with the headaches, vomiting, vision, and various other problems before the surgery…

To dealing with not being able to move, not being able to speak, not being able to get to the wash-room by myself…

 To relearning how to study effectively with my new-found difficulties, and how to work up to being active and just in general being myself once again…

 I am learning how to cope. How to keep on keeping on.

And as cliché as this all sounds, sometimes you need a bit of cliché in your life if you are the cliché of all clichés…a miracle.

 

 

Special.

I’m special. You’re special. He/she/it/we/they are special.

There’s always been a negative connotation to this word for me (in contexts other than the things that I’m doing esSPECIALly well – the things I pride myself in doing). A while ago, my English teacher did air quotes when I was talking about how those few extra minutes really helped me. She said (in air quotes), because you’re special now, you get that extra time you need to do as best as you can; even mentioning that this support is also available in university, and reminding me to take my time to regain my abilities to where they were before. This threw me a bit off. I always thought of being special as a negative thing, I didn’t want to stand out, I wanted to blend in. I wanted to camouflage. I hated the thought of being singled out.

There was once in first grade that I remember deeply. We were watching a movie in the gym (the whole school was). I miss those days – the days we would spend watching movies in class….but I digress. I felt odd, and before I knew it, I was throwing up (back to my alter-ego as puke girl).  I don’t remember much about the moments after, but they had to stop to movie I would guess, and take me out of the room to clean up myself and clean up the floor. I’m not sure if this happened, but I feel as though I remember vividly a moment where one of the substitute teacher took me to the front of the stage and said “this girl is sick!” Not sure if I’m making that up, but what I do remember happening is when I was cleaned up as best as I could be and returned, they sat me near the back where the grade 8s were. Then almost as magic, the next time I looked back, they all moved a full metre and a half backwards where they were as close to the wall as they could be and as far away from me as possible.

As a first grader, this affected me a lot. I may have been a sassy little girl, but things like this always kept me realistic. Once again, in the fourth grade, I got the stomach flu or something, and I puked on my way to school in my new green jacket. Needless to say, it was the last time I wore that jacket. I had to be away for a whole week as any time I ate anything, I would puke. Except when I ate plain rice with steamed chicken with ginger. That was the only thing I could even stomach. I had to be away from school – which I hated doing because I was away from my friends for a whole week. When you are as young as I was, everything matters hugely. But after this experience, little things didn’t matter as much. The little things just didn’t matter – school started to REALLY matter soon after; however, that’s a story for another day.

Growing up, I was always aware of the kids that were in special ed. I didn’t treat them much differently, particularly in grade 8 when I thought of everyone as family. I just didn’t understand the concept of special ed or ESL, or any of it. I wasn’t in it so I didn’t worry about it. I was just jealous that they could spend extra time doing tests, almost like VIP luxury treatment. Now however, I understand that it’s anything but. There’s no reason to be jealous of them for the little perks they have, they are going through so much difficulty to be eligible for those perks.

Thinking back on being in rehab, I had the opportunity to go to a Blue Jays game, make many cool crafts, play board-games, sing at campfires, and eat pretty decent food in the cafeteria. The rooms were nice, the facility beautiful, and the people supporting me and many others were spectacular. I thought, this is great! I feel so welcomed. I feel so accepted. This is why the MRI machines at certain children’s hospitals are so creatively decorated. Each time you went into a MRI machine, you were going on an adventure (Underwater? Space?). The sky is not the limit – your imagination is.  But if we took away all of that, rehab is terrifying. Each day filled with tests in EVERYTHING you do: OT, PT, SLP, or emotional roller coasters like being in your social worker’s office trying your best not to explode. These so called perks were not really perks. They were necessities to make rehab possible. They kept kids happy. They kept us sane.

So the same goes for the perks of being in special ed. These so-called perks make it possible for us to graduate now; make it possible for us to survive in high school, and in university/college/the workplace.

They keep us sane.

It’s been difficult adjusting to the idea of being alone next year. When almost all your friends graduate and move on to their exciting rest of their life. It’s like being the last one to marry. You know it’s illogical to feel angry, but there’s a chance that you’re going to be stuck at this level forever. That this is the best you can ever do. I know it’s silly for me so, but it still goes through my mind that this is the best I can ever do. DECA provincials just passed, and as predicted, my executive team and chapter did spectacular. Zoe (my previous internationals partner, #TeamChanYang) will be going to ICDC with her partner this year, Luke. I’m so proud of them and the rest of the people who were successful enough to get to ICDC. But this also brings up the question of who will I be partners with next year, or will I have to do it alone. The structure of individual cases are very different from team cases. They get 10 minutes of prep vs partners who get 30 minutes, and with my memory and speed now, I’m not sure if that enough for me to read and understand the case and prep it well enough. Slow and steady wins the race…but not necessarily DECA competitions.

Right now (when I first wrote this), I’m sitting in the library seminar room as I have been during my many spares. I just did a quiz today in English, and I pulled out all my sticky notes that I made. It’s a pile of rainbow papers piled pretty high that goes along with pages upon pages of hand-written notes combined with typed notes. All for a quiz that was 1 page of questions and 1-2 pages of answers. I’m pretty sure I did well on it, but I’m asking myself will it take this much prep in the future? – To do well on a quiz that would have been rather simple before. I cannot tell the future. I cannot see if I will be okay for next year in my courses, in DECA, or my other exec committees. There’s just some things you can’t see.  I need to stop trying to predict the future…

I know that I will always be unique.
But will I always be special?

I don’t know.

I don’t need to know.

Que sera sera.

What will be, will be.