Catching up (ramble)

Hey friends, however many of you may read this, I feel like it’s been way too long since I last spoke to you. I find myself in an odd and slightly lost place right now, creatively speaking. I want to share my life and story here on my blog, but I don’t always feel that I speak eloquently enough to convey exactly what I want. No matter what I do, sometimes meaning just stays stuck in my head. I wonder if maybe I just haven’t quite found the medium through which I can fully express myself yet. On the other hand, I’m not sure that one such medium exists.

While I firmly believe in the power of words, I do not feel certain that they hold the full potential for expression that I’m looking for. I want to be capable of transporting others within my personal world as fully as possible; taking advantage of as many sensory experiences as possible. My life experiences are not one dimensional, so why should my personal reflections of them be? 

I fall more and more in love with photography and capturing life in what I believe to be it’s most pure form by the day. I love music equally and yet differently; for the ability to conjure emotion and memory without ever speaking a word or seeing a visual. When I stop to think about it, so much of my frustration comes down to simply wanting to capture and express humanity: pain, love, frustration, anger, and joy. I want to let the outside world into a piece of my personal bubble, yet I cannot seem to build a big enough doorway. Perhaps I just don’t have enough materials, or the right tools yet. All that I can do is keep searching and expanding my skill set, hoping for that magical combination to present itself.

That being said, I have begun to pursue some new avenues. I will be attending college part-time for digital music production in the new year, in order to learn to compose and produce my emotions and experiences sonically. I continue to add to my Instagram, and am considering moving this blog to a new site that will allow me to also host perhaps a print shop, links to musical pursuits, and whatever else my heart tells me to chase. It’s time to make myself a bit uncomfortable again, for nobody grows in comfort and stagnancy quickly grows tiresome. I really hope that all of this helps to push me forward on this journey, and brings me one step closer to constructing that wide open doorway. 

I hope you all are well ❤ 

Sabina

Riding The Wave: When Chronic Illness Kicks Back

Personal experience has made me keenly aware that joyful moments are just that: moments. They are fleeting, and while we may try to immortalize them they will never truly last forever. All we can really do is appreciate happiness as fully as possible while we have it and, during inevitable dark times, hold on to the knowledge that it will return.

Chronic illness is constantly accompanied by its own particular brand of emotional rollercoaster. I cannot count the number of times that I have unknowingly pinned most of my potential happiness on a promising treatment or hope for a miracle cure, only to be disappointed and suffer the crash. In my efforts to not become jaded by the occasionally harsh realities of life, I left myself vulnerable to crushing letdowns. When you’re chronically ill, particularly undiagnosed and chronically ill, complacency can lead to your health deteriorating. You cannot ever lose hope for a diagnosis and treatment, or you will also lose your current and future quality of life.

I have, however, let myself get a little bit too confident in my optimism lately and far overestimated my physical capacities in the process. I spent a lot of time on my (admittedly faulty) feet, slept less than I should have, and spent a lot of time disconnected from my feeding tube, all in an effort to keep up the appearance of a healthy young adult living life to the fullest. While a combination of tube feeds, the correct medications and lifestyle modifications have brought a great deal of medical stability into my life, my body remains ill. My body will always, to some degree, be ill; no matter how much effort I throw into forgetting. When I attempt to push these facts away, my chronic illnesses ultimately bring themselves to the forefront every time and force me to face reality. This past week, I experienced yet another reality check. 

I had known that I was pushing my physical limits for weeks. I was working consistently and exercising on a regular basis, then experienced the sensory intensity of New York accompanied by a lot of time on my feet, and then nearly immediately brought a puppy into my life – cue a lack of sleep. In my world of complex neurological conditions, this is a perfect scenario for a major flare-up of symptoms. Like clockwork, a major flare ensued, and I found myself bed-bound for nearly a week.

Having recently experienced what felt like relatively limitless freedom in New York, my body reminding me of it’s faults was quite a blow. Realizing that your sense of invincibility has boundaries can be crippling at times. However, experiencing said freedom came with unexpected benefits. Feeling so on top of the world gave me a sense of hope, a more realistic inner voice telling me that my goals, no matter how lofty, are in fact achievable and that setbacks are not the end of the road. I will likely not receive a miracle cure. There are, however, ways to chase my dreams within my scope of physical ability. I just have to find them. 

Highs and Lows At Home

The past couple of weeks have been a bit of a whirlwind, but I’m finally getting a chance to process it all and put it in words. I got back from New York early Wednesday morning and immediately got right back into work;  in retrospect perhaps a little preemptively. The following Monday, I welcomed guide dog in training into my life. In and of itself, a new dog would have been a major adjustment; throw chronic illness into the mix and you have a real party.

Amari – my guide dog in training for the next year

I’ve been having trouble with pain and swelling in what would usually be my “good” foot for a while now, and upon returning from my trip this hit an all-time high. A few days into having the dog and thus needing to increase my walking, I had to cave and visit the emergency room to get my foot looked at by a medical professional. I’ll say this now: I am not sure that I have ever been so grateful for my friends as I have been over this past week. If having a dog is teaching me anything, it’s how to ask for help. You can question any of my friends and family, I am fiercely independent, often to a fault. I feel a constant need to “prove” that I can handle life on my own, particularly now that I am more physically capable than I have been in a long long time. What I often fail to process, however, is that nobody can handle life completely alone. Humans are inherently social creatures, dependent on one another for countless services. If someone cares enough to make themselves a consistent part of your life, then chances are they want to help you out in your times of need. Reaching out is, so it seems, the most difficult step of the entire process. Many friends have selflessly made themselves available to me for assistance this week, and I am more thankful than I can ever tell them. 

Life appears to be settling down again as I settle into a new rhythm. The dog and I are slowly working out a schedule that works for the two of us, and I am formulating plans for future creative projects and lessons to pursue in the new year. Health problems will come and go, such is my life, but ultimately I have so much to be grateful for and look forward to.

NYC Day Eight – Bookstore and Heading Out

The time has come: my last moments in New York. This entire trip feels like it has lasted a lifetime and yet simultaneously no time at all. Though I did have very few expectations going into this, I don’t think I could ever have anticipated the kind of experience that I ended up with. Having been to so many neighborhoods and met so many people, I feel like I’ve gotten a small general taste for this area of the world. To be honest, I think that I could live here my entire life and still barely scratch the surface of the city. I didn’t do as many tourist-type activities as I thought I might but, at the end of the day, the conversations and connections that I had the opportunity to forge were far more valuable.

They say that the people are a major factor in what makes a city great, and I find this to be entirely true. My experience here would have been so much shallower and unfulfilling had I not had the interactions that I did. It’s unbelievably easy to get caught up in attempting to check destinations off on a list when traveling, so much so that we forget to stop and appreciate our surroundings – the people included. If I had one piece of advice to tourists coming here, it would be to slow down. Don’t pack your schedule full of iconic Instagrammable locations; stop into smaller stores and venture off the beaten path. The main street chain stores and museums aren’t going to run away. Take some time to get to know the people serving you, make some lasting connections, share your story. You never know when you might make a friend.

Today was a rainy dreary day much like when I arrived here exactly a week ago. I only made one quick trip into the city, this time for a bookstore that I discovered online last night. Turns out that it is not just your average bookstore, but a collection of old maps, rare books, autographs, and other antiquities. While I’m sure that one could spend hours in that store and not appreciate all that it has to offer, I simply wandered around for a while, bought some prints, and left. At this point, I’ve accepted that I cannot and may never see all of this diverse city. Everywhere I turn, there’s something new to discover. I guess I’ll just have to return over and over again so that I can keep discovering.

NYC Day Seven – Exploring Red Hook, Brooklyn

A couple of days ago, a man in a vintage store that I visited suggested that I visit a neighbourhood in Brooklyn called Red Hook. As today was my last full day in the city, I decided that it was time to take his advice and explore Red Hook. Sean, if by chance you do end up reading this, you were entirely correct in thinking that I would enjoy it. While the commute was around an hour from my hostel in Queens, it was more than worth it.

Red Hook is, as described by a few locals, less gentrified than a lot of the rest of Brooklyn. Inaccessible by public transportation save for two busses or a long walk, it maintains a grunge that some other neighbourhoods in the area have lost. In a way, Red Hook probably has felt the most honest of all the neighbourhoods that I have visited here. It doesn’t give the impression that it is trying to be anything in particular, but rather simply exists, quirks and rough edges and all.

As I was wandering around Red Hook and peering through store windows today, I stumbled across a small pottery and leather goods store. Realizing how gorgeous of a photo opportunity I had stumbled across, particularly given the overcast day giving beautiful diffuse lighting, I took out my camera and began documenting. As I took photos, I began to speak with the owners of the shop. We discussed Canada a great deal, particularly the ways in which it compares to America. I told them about some places that they should visit, and showed them some photos from my trip to British Columbia last spring. While I had considered exploring further, I ended up spending pretty much all of my afternoon in Erdem and Zeynep’s store. I have no regrets. Having meaningful discussions and forming new connections trumps seeing tourist attractions any day. As Erdem said, museums will always be around. Below you’ll find some unedited photos that I took this afternoon, I hope that you enjoy them as much as I do.

NYC Day Six – Photos in Central Park

I spent pretty much all of today in Central Park, just walking around and taking photos and videos of the people and places around me. I really wanted to get out of the city and back into nature for a while, and this was the perfect refuge. The sun was warm and the air cool but not cold, smelling of leaves and fresh air. Today was a perfect day for exploring. The lighting was beautiful and golden despite it only being about 2pm when I took a lot of these, and I did my best to use that to show the slower pace in the park compared to the city around it. I love how no matter where you look in this city you can find someone creating something beautiful. Essentially, you need only turn around to find an artist. I walked underneath a bridge that I found beautiful and had stopped to take some photos of (see below), and came across several painters on the other side who clearly were admiring and capturing the same thing.

In a city that appears to move non-stop, it was incredibly refreshing to see others stopping to smell the fallen leaves, as it were. The people around me were, for the most part, clearly taking a break from the hustle and bustle of normal life to ground themselves in nature again. I passed many painters, writers, sketchers, and photographers as I walked along the park’s winding paths. I love exploring places like this and wondering about the stories of those passing me by. It’s incredibly easy to get caught up in our own personal bubbles and shut the outside world out, forgetting that strangers are leading their own lives with their own joys and difficulties. Really, if you stop and think about it, all that separates a friend from a stranger is a conversation or two. Today was slow-paced, beautiful, incredibly relaxing yet tiring, and exactly what I needed at this point in the trip. I guess this place really does have it all.

NYC Day Five – Talking and Wandering

No matter what city I’m in, I always somehow seem to find a way to make some meaningful connections. Last night, I decided that the drafty nature of my hostel room meant that I needed to purchase a sweater. In my search for a sweater, my first trip this morning ended up being to an REI Co-op. Conveniently the REI is located in Soho, a neighbourhood that I hadn’t seen yet, and so I had yet another opportunity to explore (read: get very lost and accept that fact). Once I had finally found the co-op and gotten my sweater, I decided to head in the general direction of Brooklyn; thinking that, since it was nice out, I would maybe check out Green-Wood Cemetery. While on the subway there, my mom requested that I visit, on her behalf, a vintage store that is in the same general area.

I thought that I would spend maybe thirty minutes in this store. I expected to see an interesting vintage collection and leave, not have quality banter and meaningful conversation with patrons and owner alike. I spent pretty much all of my afternoon in that store browsing and chatting. I live for meaningful connections, particularly new ones, and this afternoon was full of them. While entirely unplanned, I am so glad that I made the trip to that store. I left not only with a couple of bow-ties as well as a new hat and a stomach full of proper tea (take notes, America), but memories far more rich than anything that I ever could have planned for on my own. Letting go of control and just enjoying whatever happens truly can lead to the most beautiful moments. These smaller conversations and discoveries are the ones that I believe I will carry with me long term. These moments are the ones in which I am growing the most as an artist and as a person; learning and evolving in ways that I cannot pinpoint. I cannot wait to eventually return to these places as a new, better version of myself, and check back in with the people who unknowingly helped me get there.

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Two of the lovely gentlemen that I had the fortune of conversing with today. Sean Crowley (left) owns the store that I visited (Crowley Vintage).

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NYC Day Four – Grand Central and Rest

I’ve been really tired as the pain of yesterday’s tattoo caught up to me, plus it has been raining here, so I didn’t make any big plans. This post will be pretty brief, as I spent a lot of today sleeping and generally resting. I misplaced my phone charger at some point yesterday, so all I knew was that I would have to find an Apple Store to buy another one. Turns out, there’s an Apple Store in Grand Central Station. It was an ideal situation: I could get my phone charger, see a major landmark of the city, and not have to transfer Metro lines. As I entered the main terminal, I noticed a crowd gathering around some police officers in kilts with pipes and drums. I had forgotten that it’s Veteran’s Day very soon. I paused to pay my respects and watch the show, capturing some photo and video of the skilled officers’ musical performance as well as of the beautiful ceiling in the station.

I stopped in a coffee shop on Madison ave to charge my phone and get some caffeine in me as I was starting to crash pretty hard energy-wise. I then spent most of the afternoon napping and watching movies on Netflix, leaving only to get some snacks from a local grocery store. Today was all in all fairly low-key, which was desperately needed after a few high-energy days. I hope that I’ll make it to the Met tomorrow, or wander around Central Park (maybe both? who knows). Maybe it’s my ability to adapt to whatever environment I find myself in fairly quickly, but New York is starting to feel a bit like home. I’m falling more in love with this place and it’s people every day. There is no doubt in my mind that I’ll be back again as soon as I can, and continue to return so long as I am capable. This trip is turning out to be one of the best decisions that I have ever made for myself; I never want it to end.

NYC Day Three – Eloise and Ink

I’m really tired as I start to write this on Thursday evening, so it’ll probably be messy grammatically and I’ll probably edit and post it some time Friday. I do, however, want to try to capture today while it’s still fresh in my mind. I started off the day by wandering around Manhattan near the Plaza Hotel for a while, and then eventually went in and explored a marketplace of sorts that I found in the basement. Behind the marketplace, there was a gift shop themed around a character named Eloise: a little girl, who lives at the Plaza, from a book that my parents used to read to me. I won’t lie, I probably spent a little over an hour in that store. It was surreal to see the place where beloved books of my childhood were set, and to relive the joy that they used to bring me. I ended up buying two Eloise books from that store, as well as a few postcards with the artwork from the books on them.

 

My legs were pretty tired by the time I finished shopping, so I sat in the Plaza and people-watched for about an hour. By the time my legs recovered, it was time to head out again. This time, I was heading out for one of my main purposes in coming to New York: a long awaited tattoo from an artist that I really admire. I took a taxi from Manhattan to Brooklyn, where the studio is located, admiring the view from the Brooklyn Bridge along the way.

To be frank, I’m not sure how to describe just how meaningful this afternoon was to me. As the artist that I had contacted specializes in black and grey work, often styled to look somewhat like medieval sketches, I requested a piece inspired by a still life painting. More specifically, I wanted a piece inspired by a Vanitas still life. For those unfamiliar, these paintings symbolize the transience of life, the futility of pleasure, and the certainty of death. Essentially, Vanitas pieces serve to remind us how impermanent our places in this life are. While some may find that thought discouraging, I find a great deal of comfort in the fact that nothing is permanent; not even this tattoo. In impermanence, there is freedom; for no situation is inescapable. It is never too late to turn your life on it’s head if you fully commit to doing so.

I have had some pretty good discussions with tattoo artists while they do their work, but none of them even held a candle to that of Thursday. Discussing my inspiration for the tattoo led to discussing my motivations for being in New York, comparing life paths, comparing passions, exchanging advice, and so many other topics that escape me now. I left that appointment not only with a beautiful and intricate tattoo on my forearm, but also renewed motivation, confidence, and reassurance that my life path is valid. My plans, while unconventional and somewhat in flux, are valid. So long as I keep pushing forward and pursuing opportunities for personal growth, I will find success and happiness. This tattoo serves me not only as art to decorate my body, but a beautiful reminder of this period in my life and of what I am capable of. I can’t wait for it to heal and feel just as much a part of me as my other tattoos do.

This trip feels beautiful and surreal at every turn. I can’t stop repeating how fortunate I feel to be doing this. I can feel myself growing as a person and an artist at every moment, and all I want to do is pause it all and properly soak it in. Life is a rollercoaster, and I want to ride this high for as long as I can before the next drop.

CRPS Awareness Month 2018 – My Story

IMG_0860.JPGI’m not usually keen on writing a ton about the chronic illness part of my life as I don’t feel that it should define me or take up more space than it already does. That being said CRPS, or Complex Regional Pain Syndrome, has a particularly important spot in my world.

Having been an athlete in some capacity for the majority of my life, I have had my fair share of injuries and physiotherapy. At fourteen, pain was not foreign to me. What was foreign to me was the world of chronic, intense pain that awaited me in the years ahead. What I did not know was that pain, given a perfect storm of conditions,  could take on a life of it’s own. I did not know that pain could become a constant unseen assailant; a disease unto itself.

For my fourteenth birthday I received a pair of roller skis, pieces of equipment similar to roller blades designed to simulate the act of cross country skiing. I had used this equipment plenty of times before, and never been injured. About a week afterwards, while out training on my own, I fell. My knee twisted at an awkward angle, and I felt a small pop and some fairly intense discomfort. After shaking off the surprise of the fall I managed to ski home, knee already swelling and bruising. The pain of that fall has never gone away. In fact, over the course of the next two years, the pain got worse. Way worse.

I spent nearly a year with several physiotherapists, trying every exercise in the book to strengthen and heal my aching knee. I began to see a few sports medicine physicians during that time, one of whom eventually ordered an MRI scan (the first of many). When the sports medicine physician felt unsure as to whether my MRI results showed an injury or not, I was referred to an orthopaedic surgeon. That surgeon immediately identified a torn meniscus (cartilage within the joint, effectively cushioning) in my left knee, and suggested surgery as, nearly a year after my injury, physiotherapy had clearly failed. That first surgery was intended to simply stitch my torn meniscus back together, yet the stitches never worked; instead I ended up with painful internal scar tissue. A year later, enter surgery number two: this time to remove the scar tissue and torn meniscus. Ideally, this would have been my final knee surgery, and I could have moved on with my life. However, as it usually does, the universe had other plans for my life.

The pain continued after my second surgery, much to everyone’s confusion. We gave my knee time and physiotherapy to heal, but received very little benefit. Another MRI was needed, and another surgery decided upon. At this point, in an effort to alleviate strain on my legs, I had quit cross country skiing and biathlon for flat water kayak racing.

Throughout much of high school I put up with the push and pull between my desired life and my reality; of training hard only to need another knee surgery and to then suffer a major setback. I’m pretty sure that I spent more time on crutches during my teens than I did actually walking.

After my third surgery, the pain briefly seemed to improve and then intensified tenfold, becoming a new burning yet deeply aching sensation akin to frostbite. I tried medications upon medications intended to treat this, to very little effect.  At this point my MRI scans appeared normal, so nobody really was able to tell me why this had occurred. Around this time other symptoms of CRPS also began to appear such as blue, mottled skin, chronic swelling, temperature changes (my leg was very cold or very warm to touch), and changes to my bones around the injury site visible on a bone scan. No doctor that I saw had an answer to my symptoms for nearly a year, until I finally got an appointment at my local rehabilitation hospital. A physician there took one look at a photo I had taken of my swollen and discoloured leg, and dashed out of the room. I would later learn that he took that moment to speak with a woman who would become my physiotherapist and one of my biggest advocates medically, not to mention the reason that I can walk at all today. Through all of the medical challenges that I would later suffer, this woman went above and beyond to help me in any way that she could.

I spent three years in multiple hours of physiotherapy every week. I have fought for very little in the way that I fought to walk again and push down the pain that is considered, on the McGill pain scale, to be worse than childbirth. I was incredibly lucky to ultimately receive the care that I did, when I did. I should not be able to walk at all. CRPS is colloquially known to some as the Suicide Disease, as the unrelenting pain is often more intense than it’s sufferers can bear. I still deal with pain and symptoms, but these days I can cope. Not everyone is so fortunate. People who have CRPS need awareness. We need better treatments. We need funding for research. We need a cure.

Resources:

https://www.canadianpainsociety.ca/

http://www.rsdcanada.org/parc/english/resources/coalition.htm

https://rsds.org/

https://rarediseases.org/organizations/reflex-sympathetic-dystrophy-syndrome-association-rsdsa/