Finding My Normal

Life has resumed to something which resembles a steady day to day pace lately – and it’s blissful, I am so incredibly grateful for every moment, yet disconcerting and off step in a way which I’m not sure I will ever be able to articulate, all at the same time. I’m working a 9-5 job three days a week, yet I’m fed by a tube and a machine. I accompany my parents to parties, yet their conversations are filled with explaining why their hosts don’t need to offer me food and drink. I’ll “splurge” sometimes, but I pay for it in pain and vomiting many hours later, albeit now not generally to the extent that I need emergency medical attention. On the days that I do not work, I struggle to stay awake at all. Life is normal again, yet it’s not. My battles continued long after I left the hospital last summer, yet to the outside world, I appear to have been restored to full health. I love that function has been restored to my body, and that I can choose whether or not I wish to fight in secret or not, however, the secret that I often opt to keep is weighty, and I’m still working on finding my balance with it.

In the stillness following the disruption that has been the past few years, I finally have a chance to find the pieces of me that I didn’t realize I had lost, and discover some new ones. For the moment, that lies in the beauty that I now have enough energy to appreciate, and a desire to document it.

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Some Thoughts on Life and Loss

 

IMG_4269Recently I attended a celebration of life held in honour of a family friend, and the experience has brought forth some long-standing thoughts of mine; predominantly, that we all need to start having conversations about death – long before it pushes its way into our lives. I believe that on some level every human, younger people in particular, feels invincible. On a fundamental level, regardless of our intellectual beliefs, we think that our existence, and that of our friends and loved ones, is guaranteed, that we and they will still be present in a year’s time. Examples of this denial of the fragility of our own mortality permeate our culture, right down to not wearing our bicycle helmets when riding down a busy street.

On an intellectual level, many of us know that life is fleeting. We know that all too often lives end quickly and without warning, we see evidence of it constantly in the news. So why do we not talk about it? Why is death so taboo, particularly in Western culture? Why do none of us make our final wishes known, leaving loved ones to guess and worry about what we “would have wanted”? None of us would wish to force guilt and uncertainty on our loved ones, so why do we? Why are we so preoccupied with avoiding the concept of our own mortality that we cannot spare our loved ones some pain? Why can we not have these frank discussions long before we anticipate that we may pass?

 

It’s time for a culture shift. It’s time to start having uncomfortable discussions – because, regardless of our feelings, they are necessary. Funerals exist so that the living may have closure – we need to provide our loved ones with the closure of knowing that our true final wishes will be honoured.

Obsession

Lately, I’ve been feeling overcome with a drive that I have not felt in years, if ever. It feels almost like an obsession, or perhaps desperation, desperation for self-expression. With every fibre of my being, I want to create. I want to express the suffering and struggles which I have faced and continue to face. I want to make the world think. I want for them to see the beauty that exists in the ordinary, the miracles that I experience every day. I want for people to learn to appreciate the uncomfortable moments in life. I want to share my experiences in a beautiful way so that someone else might find hope as well. Perhaps this comes from my own desire to find meaning in my struggles, as all humans seek meaning from seemingly random events, or perhaps it comes from a desire for recognition and validation for my hard work to stay a functional human being.

A lifelong athlete, I have never identified as an artist. But I have great hope that this blog might become a place for me to pour out my thoughts and experiences, regardless of how messy they may be. For the first time in a long time, I can’t wait to see what comes next.

New Plans

 

“In three words I can sum up everything I’ve learned about life: it goes on.”

-Robert Frost

Once again, I find myself figuring out a way to bounce back from obstacles and make new plans for my life. Sometimes, even often, I’m over-optimistic with my ambitions. This has driven me to some successes, however, it also means that when I shoot too high, I fall down to reality hard. I love my program here at Waterloo, and the people I have met, with all my heart. However, despite the vastly improved quality of life that I have gained with my feeding tube, I still require support and accommodations beyond what this place and it’s wonderful people can provide, and, as a result, I have struggled immensely academically. In order to prioritize my mental health and academic success, I have made the incredibly difficult decision to make the move back to Ottawa, and have applied to study Computer Science at Carleton University. While I recognize that this does not represent the end of my struggles, I hope that the increased support available to me in Ottawa will provide me with some relief and allow me to fulfill my academic potential to a higher degree. Jumping into the unknown once again is incredibly scary and stressful, yet I find hope in the possibilities.

Here’s to new beginnings.

Time (and music) Heals All Wounds

I find solace in music, and power in concerts. There’s something incredibly soothing about losing yourself in a strong beat; in turning the music up high and letting it wash over you, letting the rumble of the drums push out your thoughts. There is power in singing at the top of your lungs, even more so amongst a group of people; raw emotion shared on a fundamental level through the lyrics and the melody.

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Oh Wonder: October 2016

I find healing at concerts in particular. In a crowd where barely anyone knows my name, interconnected through the music, I find new freedom. The limitations that I usually face, for that hour, are suspended in the twilight zone of sweat, smoke, and bass. In the dim lighting, nobody can see the tubing poking out through the top of my shirt, or the slim backpack strapped to me, holding my feed pump and bag. Nobody realizes my personal problems; they are all as lost in the moment as I am. All focus is on the band. In these moments, I find normalcy again, if only for a little while.

Music allows for healing at many stages: one can express anger, raw pain, even moments of joy. It allows for expression of the visceral moments of life in addition to the superficial. It allows humans to connect on a level that they cannot always express intellectually. It provides common ground for bonding. Music provides an escape: be it from the creative process itself, or from losing oneself in experiencing others’ creations. Personally, I find that when I truly lose myself in a song, I can momentarily let go of my own emotions and struggles, and experience those that the artist is expressing. If those emotions and struggles happen to be similar to my own, music can help me feel less alone.

Concerts provide the ultimate proof that I am not unique in my suffering. Hundreds to thousands of people, who also share those emotions, albeit likely for different reasons, join together in one moment of unity. In this moment, everyone at the venue is connecting with the music in their own unique way, together. It’s a beautiful experience, and I truly believe that with each one we all find an additional small piece of healing, no matter our scars.

Chronic Pain – My Achy (not so little) Secret

This year, I was fortunate enough to advance my health to the point that I was able to move away for university. This has been an incredible accomplishment, as through most of high school I was effectively house, and occasionally bed-bound by pain. As an individual who has been fascinated by the minute details of the inner workings of the world for as long as they can remember, I elected to study the physical sciences, more specifically Materials and Nanoscience at the University of Waterloo.

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Stillness on campus

Waterloo is regarded as one of the leading institutions for STEM education in the country, frequently topping the rankings in engineering, and the only university to offer my specific program. Upon acceptance, despite trepidation at the intensity of the nature of the school, there was little deliberation on my part: deep down, I wanted to have the opportunity to learn from the best in the country, and finally move forward with my life; pursue my dreams and take life off of pause.

Admittedly, while I have made great strides health-wise in the past 6 months or so, my conditions still greatly affect my life. I struggle academically far more than I used to. It has taken a lot of humility, and most of my first term here, to admit that I need help and that it is okay to ask for that assistance when needed.

Physical sciences is a traditionally male-dominated field, and, while the female presence is growing, we are still few, and disabled women even more so. Almost immediately upon my arrival here, as I started to talk with my peers, I was met with comments of “oh how many girls are there in THAT program?” and “there’s what, like three of you?”, highlighting my minority position. There is an unspoken pressure to “keep up” here,  to prove that I can keep pace with the men, that I belong too, that I deserve my place, that I have earned this. Show no weakness, don’t let them see that you struggle. Keep up the facade of the “smart kid”, do what the boys do, do it better if you can. Provide an air of competence, even if it’s only an illusion. They can’t talk down to you if you can show them up, right? If only they knew. If only they could see all of the effort that it takes to present that.

They don’t see me groan and struggle to leave my bed some mornings, the narcotics and heating pads that it takes to ease my twitching muscles so that I can show up to half of a lecture. They don’t see the nights that I spend vomiting and curled up in pain due to my paralyzed digestive tract. They don’t realize that some days, my misfiring autonomic nervous system forces me to wear leggings because my skin feels severely frostbitten. They don’t realize that I am occasionally late for lectures because I have to mix the formula that keeps me alive. They don’t realize that I cannot complete all of my homework; some days I am simply far too exhausted.

If only they could see. But they can’t see. I cannot let the cracks in my armor show. Show no weakness. Keep up with the men. Keep up with the others. Keep up. Always. Don’t let them see you fail. Don’t let them see that not only are you a woman, you’re weak. Only let them see your strength and intelligence, even when it’s the last thing you feel. The struggle is not celebrated; success is.

It’s time that we made space for everyone in STEM. This is no longer only a man’s game; it hasn’t been for some time. We have made space for women, we can make disability and illness acceptable as well. Science is not only for the strongest and smartest, it is for the intellectually curious and hardworking, regardless of final result or time spent on the process. There is strength in diversity, in varying perspectives. Those who have struggled with their health bring with them an incredible work ethic and a passion for a second chance at their dreams – this ought to be celebrated instead of silenced. Let struggles become the strengths of those who have faced them. Let people break their silences. Let the world see what they face. So that maybe, one day, they can know. And nobody will have to fear that their reputation will be lost.

On change (and learning to accept it)

Six years into life with chronic pain, six months into life with a feeding tube, and I still haven’t figured out how to accept my “new” life; how to find the “new normal” that everyone seems to speak so highly of. Perhaps my new normal is just to sit with a certain level of discontent, of jealousy, “what if”s, and “what could have been”s. After all, nineteen-year-olds are not meant to live life with restriction and fear; where are my carefree years? My years of late nights and parties, of spur of the moment outings and no restrictions? Of freedom? Sometimes, it all feels impossible to accept. This life of mine doesn’t truly feel like it does belong to me; it’s certainly a far cry from the intense athletic experience that it used to be. How does one learn to be completely content in the presence of what feels to be their entire lifestyle? Stripped of nearly everything that one defines themselves by, how does one learn to build a new character? Blank slates should be exciting, so why does this, still, feel so much like awkward scrambling with no direction? I don’t know who I want to be, except for who I used to be. And I can’t have that.

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For now, I’m taking each moment of frustration as it comes, and allowing myself to grieve my old life in those moments. In the stillness after the whirlwind that is diagnosis and treatment, I find myself reflecting, and being angry, and crying more than I have in years. At this point, hoping hurts, because I’ve been disappointed by my body time and time again. I guess I feel betrayed, and repairing my relationship with the vessel through which I experience life will take time, as it would take time to repair any other relationship. Starting is just… difficult. For now, there’s solace in music, and doodling, and writing, and cooking, and being alive to feel the breeze on my face for another day.

I hope you all find your solace from your struggles as well, wherever that may be.

Hello world

First posts are funny – I never quite know what to put down. Since I’m a nerd, for this blog I’ll start with Hello World – the name of both the first program most people compose and now the name of this post, a composition in its own right.

So Hello World, I’m a daughter, a sister, a friend, a (very amateur) artist, a fan of sunrises and of the smell of spring, and an endlessly curious student of this world. I also happen to have been sick for the past 5 years and will be for the rest of my life. I depend on a surgically placed feeding tube for nutrition, and many medications to lessen constant allergic reactions, nausea, and pain. My life is certainly more challenging than that of the average young adult, but I do not believe that those challenges make it any less beautiful, or valuable, or worth participating in than anyone else’s. We all face ups and downs in life, here’s me being open about mine. I hope that you’ll stick along for the ride.