(Chronic) Illness and Education

Anniversaries” (2020)

I initially began writing this post back in January, and yet it feels more relevant now than ever before. While I cannot recollect what led me to originally enter this title in to my blog drafts, I can only imagine that it had something to do with my ongoing frustrations with just how inaccessible my experiences with education, particularly post-secondary, have been.

Historically, my interactions with post-secondary institutions have been very rigid; shape up or ship out, as it were. Incapable of attending physical classes? So long, attendance points. Unable to meet tight deadlines? Plan accordingly for your unpredictable health. In need of a reduced course load? That simply isn’t how we do business here, work harder.

Work harder, plan smarter. Work harder, plan smarter.

I love to learn. The feeling of my mind igniting as it integrates a new concept is like none other. I do, however, have conditions which affect the length of time needed in order to complete said integration process, in addition to occasionally preventing me from being able to physically attend classes. Medication side effects and common colds only serve to compound these difficulties. Once a bright student for whom traditional memorization techniques worked, I now have days where I feel quite slow. My brain feels like a murky riverbed through which I cannot swim, only trudge. Despite my best efforts and high levels of motivation, academia has not proven particularly well equipped to accommodate my needs. School has left me feeling frustrated, rudderless and rejected more times than I can count. How am I supposed to singlehandedly tackle a system designed against me when there are days when I barely have the energy to leave my bed?

I began this post pre-pandemic. Since March, education delivery methods that were once entirely off-limits at the request of disabled students, such as digital learning and alternative assessments, have suddenly become commonplace. Truthfully, I cannot help but feel a certain level of resentment. Why was providing these methods to disabled students such an extraneous task, if the capacity to implement them quickly was there all along? Why was I made to feel like a burden, as though I was seeking unfair advantages and intentionally creating extra work for staff? Why was the system so unyielding to me, so entwined in its own rules and traditions that it failed to see the students falling into the cracks? Why was I put in this box to which I would never be able to conform?

All I want to do is learn and grow and develop as a human being; I do not understand why that is seemingly such a ridiculous request. I fail to see why my health makes me an inherently less valuable student than my able-bodied peers. What good does an “inclusive environment” serve if the only students who can participate are those who require minimal to no accommodations? How many bright minds are being lost to these rigid and unwelcoming systems?

I have been so very fortunate to find a home in a school that welcomes, and even celebrates, my differences. I can’t help, however, but think of all of my disabled peers who have not been so lucky. Students who either are struggling their way through degrees and diplomas in pursuit of their interests in spite of the additional difficulties that their schools impose upon their lives, or who have flat out been forced out of their passions and in to low-paying jobs. If we, as a society, can shift classes online on a dime, we can implement better supportive structures for students in extenuating circumstances. They deserve better than the bare minimum.

I deserve better than the bare minimum.

Anniversaries (are bittersweet)

Wow… hi friends. I haven’t posted on here since December, practically a lifetime ago. So much has changed since December; I’m several classes smarter, several concerts more fulfilled, several months lonelier (thanks COVID), and wealthier in countless experiences and images. If you’re reading this, as the world feels like it is simultaneously falling to pieces and yet restructuring in much needed ways, I hope you’re coping okay. I hope that, if nothing else, you know that you are loved by me; even if we have never spoken.

I’ve taken to doing my best to process most of my emotions in a personal journal instead of publicly on this blog, however I feel that this time of year is particularly important to address. This week marks the three year anniversary of a hospital admission that both saved and completely altered the course of my life. In a month’s time, I will celebrate, if you can call it a celebration, the three year anniversary of my feeding tube placement. I never wanted a tube, and if I’m being honest I still don’t want one. I dislike all that it represents: a constant reminder of all of the ways in which my body has failed me. On the flip side, however, a feeding tube has opened up my world in ways that I could never have imagined. Pre-tube, my life was very small: largely consisting of IV fluid treatment, physiotherapy, and a multitude of visits to specialist doctors who could never diagnose, much less help me. Post-tube, I think I can count on one hand the number of times that I have visited the ER. I rarely even see specialists anymore. My physiotherapy journey has progressed by leaps and bounds. I go to school. I go to concerts. I run. I go hiking. I go camping. I have a dog. I have friends. I have hobbies. I make art.

Life with a feeding tube is, in my case, objectively better than life without, and yet I still have a complex web of emotions surrounding it that I work constantly to untangle. With return to a sense of quasi normalcy, comes an insatiable craving for complete normalcy. I do not just wish to simply be functional, I wish to be healthy, and yet I may never achieve that. I can never go back in time and erase the past 7 years of my life, and I can never pretend that my body comes with the usual 21 year old lack of limits. I am, and always will be, ill to some extent. Acceptance is a complicated journey that I navigate daily. As I grow more functional, I learn to balance two sides of myself that are very much at odds: the free spirited 21 year old, and the rare disease patient. Neither are me, and yet both are me. Sabina loves to rock climb, but she needed years of physiotherapy to get there. She loves vegan ice cream, but some days her only calories come from a pump and a bag. She loves to stay out late with friends, but can pay for it dearly in fatigue and pain for up to weeks afterwards.

They say that balance is the key to life; I suppose that my balance just looks a little different than most.

End Of Year Thoughts

Wow, I feel like I blinked and the year passed me by. It’s certainly been a hard twelve months, but they’ve also been some of the most beautiful and inspiring and productive months of my life so far. If nothing else, this year has allowed me to prove my resilience to myself in a whole new way. Every time that I felt stuck or dissatisfied, I was able to check in with myself, make a plan, and adapt. 2019 saw me dig deep and get to know myself creatively, professionally, spiritually and emotionally. 2019 saw some hardship, but also incredible growth. As the year finishes, I have nothing but gratitude for everything that happened this year, no matter how unexpected. Despite the motivation/burnout cycle that seemingly followed me through the months (if you look at the titles of my past blog posts then you will absolutely see the trend), I feel that I am entering 2020 with more clarity than ever before. It truly is miraculous, the possibilities that exist when we let go of our mental “should” statements and desire for absolute control.

While 2019 gave me burnout and frustration, it also granted me some truly incredible new connections and opportunities. I was able to see my work in print for the first time, collaborate with local musicians that I absolutely adore, and receive mentorship from some amazing fellow visual artists. I feel like I found passion and purpose in 2019, and no amount of struggle can take away from that. Cheers to more learning, bigger projects and beautiful collaborations in 2020!

xoxo

Sabina

Taking Chances and Moving Forward

I feel like I’m in a bit of a perpetual disappear/update cycle on this blog, but hi again! It’s been a crazy few months for me, I’d say a period of rapid growth and change, but as things wind down for the holidays I feel that it’s time to keep you all in the loop.

Towards the end of the summer, I found myself feeling incredibly stuck and frustrated, both creatively and professionally. Come September, I took a trip to New York that allowed me some time for personal reflection but still left me feeling somewhat directionless. Upon my return to Canada, I began studying part time at a local photography college, hoping to boost my skills and regain a sense of creative purpose.

To say that the past few months have exceeded my expectations would be an understatement. First of all, and this could be a blog post in and of itself, I’ve come to realize the value of a creative community. Mentorship, constructive criticism, and support are without a doubt more valuable than any piece of software or equipment that I could ever purchase. Taking class gave me access to people that pushed me to be more intentional with my photography, to think more critically about my editing process, to develop personal projects and to combine all three of those attributes to create work that has impact. Taking class also pushed me to increase the sheer volume of photos that I took, and, as a result, boosted my technical capabilities. It gave me access to studio equipment that I would otherwise not have, and instruction on how to use that equipment to convey my desired message. Most of all, class reignited my passion for photography. That ignition, in and of itself, is worth the money spent on formal study.

Alongside my creative progress, the past few months also afforded me some professional development. I’ve had paid opportunities, and the chance to see my work in print alongside some truly incredibly talented artists. Grateful does not even begin to describe my state of mind these days. “Onwards and upwards”, as I told a friend recently.

The cover of the publication in which my project has been printed. Endlessly grateful.

In developing a personal project with the intention of submitting it for print, I’ve also come to realize the value in holding work back from the internet while allowing it to come to fruition in trusted circles. I’ve said it before, but art takes time. Digging deep in to personal experiences, and creating art out of trauma as a result, takes time. The internet can, and sometimes should take a backseat. Those who truly value you and your art will wait for your creations and support you along the way.

It’s been a wild past few months, my friends. I plan on increasing my course load next term, and hopefully accelerating my personal growth as a result, but we’ll see. Either way, I can’t wait to see where life leads me next.

Hope you’re all well!

xoxo

Sabina

Personal Growth

I’m a pretty firm believer that personal growth occurs when we break down habits that are no longer serving us and form new ones. To be honest with you, I’m learning that breaking down old habits sometimes appears online as “less productivity”. Using social media to build a personal brand (and let’s be real, if you’ve got any interest in making money off of your art then you have a personal brand) is an inexact science.

Online, art can easily become a commodity; easily exchanged or forgotten for the “next best thing”. Product becomes heavily favoured over process, and we are fed the idea that in order to be “worthy” we must be constantly productive. As I have stepped away to focus on a personal project, I am now beginning to learn just how much value there is in cycles of work; in taking one’s time to develop skills and ideas so that quality of work can improve as well as mental and creative well-being.

Contrary to what I used to believe, reducing my social media presence has not reduced my following. If anything, my following has grown slightly. I believe that people fundamentally want to follow accounts that they can connect with, and that connection does not necessarily equal post frequency. If I am capable of producing quality art, or expressing a moment of vulnerability in my captions, then I want to be displaying that online to the best of my ability. Right now, my best ability means less frequent but more meaningful posts while I develop my skills and work on personal projects, and that is absolutely acceptable.

My fellow creatives: your social media productivity does not equal your worth. Take your time. Create art that has impact. Create art that has meaning. Develop your skills. Make real-world connections. Dream big. Be a kind human being. Take care of yourselves. Your people will find you, I promise.

xoxo

Sabina

New York: Lessons Learned

I went to New York for four days, and I barely took any photos. Honestly, the only snapshots from my time there that I’m satisfied with are three Polaroids. I think that a subconscious part of me knows to seek out travel/change when I need to address habits or thought patterns that are holding me back, and this trip proved to be no exception. I addressed this briefly on Instagram, but my camera had begun to feel like a barrier: a glass wall standing in the way of me properly processing personal experiences as opposed to a conduit allowing me to express them.

I’m not blaming social media for my burnout, but it does create this interesting culture in which people are expected to be constantly productive. Whether you identify as a student, an athlete, an artist or a chef, you need to constantly be generating “content” to keep your followers interested. In a way, everybody with an Instagram is running a small business, whether they realize it or not. Some people, such as myself, can get so caught up in keeping up with a schedule or trying to be strategic that they forget to sit back, take a breath, and let ideas develop at their own pace.

At its foundation, art starts with an idea. Over time, that idea slowly develops in complexity, and the artist’s skills grow, and eventually the two intertwine to form a project. For a while, I forgot this. I got a little bit caught up in the hamster wheel of panic, and didn’t take the time that I needed to address the ideas that had existed all along. My trip to New York this time around gave me the much-needed space to write ideas out and simply allow them to exist; to plan and dream and experience without any sense of urgency.

Towards the end of my trip, I came to believe that burnout is not only necessary, but beautiful. I believe that burnout is what happens when an avenue has been pursued to its fullest extent, and change has become necessary for continued growth. Burnout is the result of one iteration of an idea being pushed to completion. Burnout is beautiful; it allows you to take stock of your situation with fresh eyes, and dream of new solutions. Burnout is a turning point for the sake of personal development.

New York this time around was full of introspection and writing and sketching and alternate forms of self-expression from my usual. New York was personal growth and living in the moment and learning to soak everything in as fully as possible without a lens: for I believe that I cannot properly capture a moment that I do not know how to experience on my own.

Packing up (Counting down to NYC)

Here I am, about ten months since the last time I visited New York, once again preparing to visit in the midst of some fairly major life adjustments. I am the same person that I was a year ago, and yet that past version of myself also feels like a complete stranger. If twice is a pattern, it seems that some part of me is drawn to the city in the aftermath of chaos. Perhaps it’s simply the refreshing change of scenery, perhaps it’s my own restless energy feeling comforted by a city that truly never sleeps, but I have yet to find a place that makes me feel more at ease with change.

Last time that I visited New York, while I was open to spontaneity, I had some vague plans. This time around, however, I have next to none. If last year’s trip taught me anything, it was the value in forging ahead blindly; in being open to new experiences and letting the universe guide me moment by moment. I’ll be in NYC for four days this time around and, aside from one concert, I have goals in place for my trip. Seeing a blank calendar has never been more satisfying, and coming from a self-professed workaholic that’s saying a lot. I’m stepping in to a bit of an unknown here, but I hope you’ll stick around for the ride. Let’s see where the next week takes us!

Re-Centering

Following a period of mental and physical burnout towards the end of August, the theme of the past week, for me, has been recovery and re-centering. I’ve spent my time on self-care, and on tasks that haven’t been pressing enough to warrant my attention for months now. I’ve spent time with friends, I’ve spent time playing my guitar and I’ve spent time in nature. I’ve spent time with my dog, in libraries and bookstores, preparing for an upcoming trip to New York, and I’ve spent time with family. I’ve spent time sketching in parks, taking pictures for the sake of pure creativity and self-expression, and doing yoga.

I firmly believe that in order to express oneself properly through one’s art, one must first understand themselves. Self-doubt, stress and other obligations, in my opinion, are simply noise that cloud the ability to fully understand oneself from within. The key to beautiful creations lies within finding clarity amongst all of the noise. After all, how can we ever accurately portray our experiences if we don’t take time to process and understand them?

For me, January through the end of August was full of noise. I feel that, in many ways, I entered a tunnel that I am only now beginning to exit. Some days it feels like I went to sleep in January and woke up mid-August. I got caught up in a cycle of spinning my wheels working hard, feeling burnt out, and then feeling that my only option to escape the burnout was to work harder and “muscle through it”. Anybody who has known me for more than five years will agree with me when I say that this “muscle through it” mentality both never works for me, and yet is always my default. It seems that I am continuously learning that work does not have to equal suffering.

As I come out of this tunnel, I hope that increased clarity will lead to an increase in the quality of art that I am able to create. To assist this momentum, I will be taking a part-time photography course this fall, and I have purchased a new lens that I had been admiring for quite some time (if you follow me on Instagram you’ll have seen me raving about it already). I aim to use the next couple of months to become the best version of myself, both personally and as an artist, that I can be right now. I hope that you’ll all stick around to see what comes of it.

xoxo

Sabina

Life With Limited Energy – Photography and Chronic Illness

External pressure and expectations can be difficult for anybody trying to pursue a creative career. Social media, a necessary business tool, can make avoiding comparison and the “hustle mentality” nearly impossible, while conversations with other artists can either be incredibly uplifting or deeply detrimental. For some creatives, including myself, this pressure and guilt is compounded by forces beyond our control – such as chronic illness.

I’d like to make one thing clear off the bat: chronic illness does not make me any less capable of seizing opportunities and working hard. It does, however, mean that my life, including my career and my studies, requires much more careful planning than it used to. Chronic illness does not define my decisions, but it has absolutely shaped them. When one lives with severely limited energy, one learns to take stock of their goals and priorities on a continuous basis. In order to pursue photography, I make sacrifices in other areas of my life that an able bodied person may not necessarily need to. For example, on a day that I plan to shoot a show, I will probably choose to nap in my free time instead of exercise (particularly if I plan on working at my day job beforehand).

In my world, energy is a precious resource which needs to be managed wisely. I cannot work hard blindly (as much as I might like to and some days try to), for I do not have the resources to sustain it long term. Unfortunately, in a world that supports a hustle mentality over self care, I occasionally experience guilt in having to take things at a slower, more measured pace. While the guilt may be unfounded, I believe that it is important to acknowledge and respect. In the media, we are increasingly hearing of artists being encouraged to hustle, and pushed to the point of mental and physical burnout. While artists are by definition passionate, the exploitation of that passion has a limit . I suppose that in my own little way I hope that sharing my struggles will contribute to a more balanced culture surrounding work/life balance for artists.

Internet Detox

For half of this month, the internet in my apartment was non-functional. With very little digital media to distract myself with, I found myself feeling much more grounded in the present moment, sleeping better, creating more art, and reading much more. I could go on forever about the benefits of the occasional internet “detox”, and perhaps I will in a future post, but for today I’d honestly just love to share a couple of the books that I discovered this month with you all.

Girl In A Band – Kim Gordon

Image result for girl in a band

Girl In A Band, the memoir of Sonic Youth’s former bass guitarist and vocalist Kim Gordon, was perhaps one of the more impactful pieces of literature that I’ve encountered recently. If nothing else, artist or not, this book serves to remind the reader of the meandering nature of life. From childhood to the dissolution of her marriage and beyond, Gordon shares her successes and challenges in a way that feels incredibly personal; as if she’s simply telling a story to a friend.When you take a look at the “big picture” of Kim’s life, the roundabout nature of her success as a musician and artist ultimately contributed to the richness of her experiences, and from this I gained a great deal of both comfort and inspiration.

How Music Works – David Byrne

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Part memoir and part objective commentary on both the music industry and music as an experience, How Music Works provides me with a new lesson every time that I re-read it. Somehow, through his insights and experience, Byrne manages to subtly alter the ways in which I process my musical experiences. This time around, How Music Works has absolutely shifted me from a more mass-production (streaming/playlists and singles) based method of consumption to, when possible, a more body-of-work based method of consumption (vinyl records, albums from start to finish as intended by the artist).

Many Lives, Many Masters – Brian Weiss

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Deviating from what would otherwise be a music theme this month, I also took the chance to, once again, read Many Lives, Many Masters by Brian Weiss. Weiss, a Yale educated psychiatrist, presents an intriguing and deeply personal experience with past-life regression and reincarnation theory. For those of you who choose to suspend your disbelief, I would highly recommend this book, as it has been incredibly formative in the development of my own spiritual beliefs.

While I did go through several more novels and fictional works this month, I found these three books to be the most impactful on my day-to-day thought patterns and way of living, and therefore the most valuable to share. The loss of my home internet was truly a gift in disguise, as I have now re-kindled my love for other, arguably more healthy and productive, ways to fill my time; including reading. Should any of you choose to take a look at these books, or go on an internet detox yourselves, I’d love to hear your thoughts!

Til next time,

Sabina