NYC Day Two – Milk Bar and Broadway

Today was my first day properly exploring the city (read: getting very lost very often and loving every second). Honestly, this all feels like some surreal dream that I’ll wake up from at any moment. I’m here, I’m here on my own, I’m here because I can afford to do it on my own, and I’m seeing places and people that I’ve only ever thought of conceptually. My mind can’t seem to wrap around the idea that this is actually possible for me. My world feels like it has expanded three hundred-fold in the past twenty-four hours. I will scream it from the rooftops until the day I die: receiving proper nutrition and hydration is an absolute miracle. None of this would be possible without the medical care that I have received over the years, and the medical device in my abdomen.

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While I spent a lot of today just getting lost and soaking in the energy of the city, there were a couple of planned trips as well. I had “breakfast” at a cafe in Chelsea called Milk Bar, a place that serves food more akin to the lucid dreams of a five year old than standard baked goods. I got coffee as well as one of their iconic dishes: soft-serve ice cream designed to taste like milk at the bottom of a cereal bowl (seen below).

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I rushed back to my hostel briefly after my food to drop off my jacket as it was getting too warm out for it, and then headed back out to Manhattan to pick up tickets that I purchased for a last minute Broadway show: Dear Evan Hansen. Knowing only the soundtrack, albeit loving it, I didn’t know what to expect from the live performance. I’ll be honest, I’m not usually a musical theatre fan. I am, however, a music fan; and dear lord did this show ever deliver on both the musical front and the emotional impact front. Sitting in a crowd hearing songs that I have only ever heard through my headphones, or belted alone in my bedroom, was an incredible experience. In addition to not usually being a musical theatre fan, I am not usually one to cry at plays or movies; yet this one had me shaking and overwhelmed with emotions that I don’t even have words for. I want to capture the feelings from those few hours and hold on to them forever.

I was also fortunate enough to meet some of the cast after the show as well as get photos and signatures, thanks to a tip from a friend. By the time that I had found my way back to my hostel, showered, and called some friends and family to update them on my day, it was already nearly 7pm. My legs are very tired so I’ll probably just sleep soon. I have a tattoo planned tomorrow that I’ve been waiting on for a long time, but who knows what else the day will bring? I can’t wait to see.

I’m in New York City… Why?

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Around the time that I decided that I would not return to university this year, I committed to a decision to, when possible, no longer delay my current happiness for the sake of potential financial stability later on. I decided to reject the mundane, and, with the knowledge that I wouldn’t be spending my fall in a lecture theatre, booked a solo trip that I had been considering for a long time. Three months later, I find myself writing this post from a hostel in Queens, New York City.

 

 

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I will be going to a small concert tomorrow night via an online service called Sofar. On Thursday, I’ll be having a tattoo added to my arm by a man who’s work I have admired through Instagram for a long time. There is a climbing gym a five minute walk from my hostel, and a coffee shop on site. The hostel has a guitar that I’ve already been playing, even though it only has five strings. I had amazing ramen tonight at a restaurant that I came across by accident, that didn’t have a sign, and barely had a full sized door. I could easily stay within this neighbourhood for my entire trip, or make it my mission to explore as much of the city as possible. I don’t have many concrete plans for my week here, and, to me, that’s the best plan of all.

I can cultivate this experience to be whatever I wish. My extroverted self can thrive here; constantly surrounded by a wide variety of people. My creative self can flourish here, should I choose to nurture it with new artistic experiences as I fully intend to. In this city, in planning this trip as I go, I feel more in control of my destiny than I have in a very long time. Here, life isn’t simply happening to and around me as it did at school, I am choosing it over and over again. This level of independence, this complete freedom, makes me feel that I am not a passive participant in my fate. To a girl who has spent years choosing little to no major events in her life, doing what she has to survive and fight for function while missing many “normal” young adult milestones, solo travel is absolute bliss. To be honest, I’m a bit giddy with possibility right now.

There are people living in this city who, through hard work and determination, have accomplished the unimaginable. It’s an incredibly strange yet encouraging feeling to be, in a way, among those people right now. Maybe it’s a naive mentality to have, but this place makes me feel like anything is possible. Then again, the very fact that I am alive and here writing this is somewhat miraculous; who’s to say what the future can or cannot hold.

September and October 2018 – Feeling Lost

fullsizeoutput_494.jpegI won’t lie, I’ve found myself to be busy and less motivated creatively over the past couple of months. It’s incredibly easy to fall into day-to-day living and lose track of bigger goals, and to some extent I have allowed myself to do that lately.  Seeing others my age return to school was more discouraging than I thought it might be, and seems to have thrown me for a bit of a loop emotionally. When I see others my age with seemingly clear plans for their future, I can’t help but question my choice to put myself first and get some distance from institutional education. I feel pressure to conform and study conventionally, despite not being able to identify any one direct source of this pressure. I find myself questioning decisions that I know feel right for me, purely because they aren’t popular choices. I’ll be honest, sometimes I’m really not sure how to convince myself that the paths I choose are worth pursuing. Some days I feel like I’m pushing towards an even greater unknown instead of a clear-cut goal; but I keep reminding myself that no one has it all figured out. I tell myself that as long as I keep chasing my perceivedtruth and working hard, details will fall into place. I really hope that I’m not wrong.

To some degree, I know that I’m not incorrect: details have become more clear with time. I fall more in love with music with every concert attended, every lesson completed, and every minute spent playing and writing. I fall more in love with writing with every poem, song lyric, or blog post written. I fall more in love with photography with every meaningful moment captured, no matter how seemingly mundane. I feel sure of very little besides the existence of my passion for self-expression. I refuse to let my experiences, both painful and not, to go to waste. I refuse to keep them to myself, as I know that the lessons and meaning that can be gleaned from them can, and will, benefit more than just my own life; if I can only phrase and promote them effectively. I just need to keep pushing forward, even if I don’t exactly know where forward goes. As long as I can keep myself financially safe and continue to learn and express myself, I’ll be okay. Take some deep breaths Sabina, things will be okay.

Cycles of life

This life can be strangely cyclical sometimes. My feeding tube was getting old and in need of replacement, and so a visit to the hospital was needed. I hadn’t been back to this hospital in over a year; since my first tube was placed. I’ll be honest, returning to the place that I spent so much of my adolescence after so much time away felt incredibly strange. I came back to the same building, and, coincidentally, the same bed and stretcher bay as when my tube was originally placed, an entirely different person. Coming back to an old way of life as effectively a new and changed human, I have learned, triggers the strongest deja vu sensation that I have ever had. The closest thing I could probably liken it to would be revisiting a childhood home that your family moved out of long ago, or your former elementary school; you become a stranger in a place that was once familiar.

In a way, in the past year, life has come full circle and yet also moved full steam ahead. I suppose that describes life as a whole though: remnants of the past interspersed with reminders that change is inevitable and time only moves forward. People change, but places, and memories associated with them, stay more or less the same. Maybe, just like in other parts of our lives, we have to learn how to balance. We all try to toe a delicate line between retaining memories of the past while still living in the present and planning for the future, and it’s far too easy to let one element dominate; pulling us away from the experience at hand. Perhaps the key is simply experiencing every moment as it happens and allowing it to pass by naturally, even when those moments pull us away from the “real world”. Perhaps the most touching moments occur when we do not force them at all.

When Birthdays Mean More

DSC_0084.JPGI turned twenty about a week ago, and it’s taken me about that long to formulate any kind of coherent thought on the milestone. For a while, I honestly wasn’t sure that I would ever see this day. Over the past five years, my life has taken drastic turns countless times and thrown scenarios at me that I hadn’t even known could exist. Every time that I didn’t know how to tolerate the situation around me, or whether it even could be tolerable, I found a way to work through it. Every time that life felt a little bit too tough to handle, I proved to myself that I could be tougher. For a long time, crises seemed to keep piling up incessantly and I wondered when life would allow me to finally rest.

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The past few years have not come without their scars, both physical and emotional. After all, no warrior leaves a battle unscathed (as much as I dislike the warrior imagery when it comes to chronic illness, it has got a certain powerful feel to it). I still struggle with remnants of the past; experiences which haunt me and control some of my actions to this day. I don’t know that the trauma of this journey will ever quite leave me, to be honest.

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These days, I’m doing better, better than I ever could have imagined. I have friends, hobbies, plans for the future and independence. I have energy to pursue creative projects and hone new skills, as well as rediscover old favourites. I can climb, and I can make music. I can write, and I can take photos of my friends and family. I can appreciate the life around me, and work to capture it’s beauty.

Ages fifteen to twenty were beautiful, difficult, draining, exhausting, and motivating. They showed me just how strong the human spirit really is; just how strong my spirit really is. The past five years have been a wild ride, but I cannot wait to see what the next five bring.

Monthly Roundup: September 2018

I didn’t get a chance to make an extensive video this month aside from clips of my family, so September’ll have to just be described with words and photos. It was a weird, wonderful whirlwind of a month, mostly busy with work, exercise, creative pursuits and time spent with loved ones.

Once again, I found myself spending the beginning of the fall working instead of attending school. Having made the decision to take time to consider my true desires in life instead of steamrolling ahead with education, I am continuing to work for a small software company and creating art in my spare moments. I’ve begun to take singing lessons, in the hope of improving my voice to be able to bring my personal thoughts and poems alive with music. It’s lonely in a way, not being constantly surrounded by others my age but, right now, this path feels like the best one for me.

I’ve continued to make an effort to explore my city, often discovering new businesses through Instagram and then seeking them out on weekend adventures. This is proving to be a great way to meet new people and become more involved in my community. I rekindled an old passion for photography in doing this, finding another outlet through which to express myself. I really love the freedom that less formal education is allowing me, and am considering pursuing yoga teacher training in order to be able to continue to work and create simultaneously. I hope that maybe some day my creations will connect with someone and help them to feel less alone in their struggles. September has been a great month of continued self discovery, and my last one being a teenager. I cannot wait to see what my twenties bring.

Feeling Inhuman

I can’t be the only person who has, at times, felt less than human.

I can’t be the only one who has felt repeatedly reduced to a number, or a set of numbers, by an institution. I can’t be the only one who’s invested significant emotional energy into the pursuit of a goal, be it grades in school, better health, even weight loss, only to ultimately be defined by a few lines on a piece of paper.

Large institutions such as hospitals have their own unique way of removing humanity from people at some of the most vulnerable points in their lives. Arguably, these vulnerable points are when preserving someone’s humanity should matter the most, however the medical system often rejects this in favour of efficiency.

If you’ve ever been to an emergency room, then you’ll know this next bit off by heart: triage, registration, wait. You do a lot of waiting in hospitals. You arrive and begin by standing in line, already becoming a nameless member of a mass of broken bodies. The severity of your problem is assessed, you’re given paperwork, and you wait with the group again. Finally, you’re given a number and a wristband, used to identify you throughout your time in the building. This band will be checked time and time again: before every medication, every procedure, every needle stick and every blood pressure measurement.

While useful in ensuring that everything given and done to you is in fact intended for you, preventing mistakes in a system that deals with hundreds of people at once, hospital bracelets lie at the centre of an incredibly dehumanizing experience. Over time, to me, they’ve come to represent a loss of individuality.

When stuck wearing one of those bands,  I am, in the eyes of the people surrounding me, little more than a number and a set of complex health problems. The only information about me that the people caring for me can access is effectively a list of my problems and some numbers, and that list is accessed through my bracelet. My progress is measured in numbers on test results; numbers upon which my life and freedom depend.

Eventually, it begins to feel like I embody the numbers on my medical chart. My sense of self and my health issues become inextricably intertwined as I spend more and more time in medical establishments, until one day I too, despite my best intentions, have reduced myself to a set of problems. I let myself become less than human, and finding my way back is more difficult than I could ever imagine.

I have, however, chosen to carve my own path back to my humanity. I have found so much life outside of the hospital rooms that worked to give it back to me, and I never want to waste it. I have a second chance to define myself, and no paper band on my wrist can take that away.

Coming Out: An Ongoing Story

For National Coming Out Day, I decided to collaborate with one of my best friends to try to bring to the forefront the intersection between disability and sexuality, and the challenges that disabled individuals may face within the LGBTQ+ community. This is her story, in her own words.

You can follow her on Instagram, where she posts digital art: jessm.art

-Sabina

 

 

I’m sick, and I’m gay. This is my coming out story.

When I was fourteen, I came out. I’ve used many labels, experimented with many identities. From a young age, I knew I was queer. Coming out was a very positive experience for me, thanks to many supportive people. I felt like a huge weight had been lifted off of my shoulders, like I could breathe again. That feeling of relief and freedom has made me the strong, queer individual that I am today. The year that I came out was also the year that I got sick.

I’m now nineteen, and on National Coming Out Day, I’m ready to tell my full story. Nothing hidden, nothing held back. I’m ready to tell the world that I’m here, I’m queer, and I’m disabled. I’m a chronically ill, gay woman.

Having been out for many years, I can safely say that coming out isn’t a one time deal. You come out to people whenever they enter your life, to your loved ones and those who simply surround you. Coming out is a journey that never ends, a fact of life for a queer person. I have felt very little discomfort with coming out as queer, and am generally very open about it.

I’ve been lucky, but not all the time. I’ve had many people ghost me, or leave because they couldn’t handle it. I understand their discomfort. Dealing with my conditions and reality can be a lot to cope with, particularly for a young person. Being rejected by someone due to my disability hurts, but being rejected within the already limited queer community hurts more.

The queer community is a party. We thrive in environments where we can be loud, with bright lights, music, and dancing. I love being a part of such a vibrant and loud community, unashamed and fiercely strong. I don’t feel that that love is always returned to me. Queer events are notoriously unwilling to accept people like me, the members of the community who need some accommodations. When I attended the Philadelphia pride parade this past year, accessible toilets were placed on a wooden platform, only accessible by steep and rickety stairs.

I do not fit in with the stereotypical image of the queer woman, or of the LGBTQ+ community. Loud, bright concerts aren’t necessarily fun for me. Standing and dancing without being able to sit is extremely difficult. The sensory overload brought on can leave me out of commission for days.

Trying to date is honestly a minefield. I live in a city where the queer community is predominantly male, and where finding someone compatible is like trying to find a needle in a haystack. Someone my age, single, with mutual attraction, and things in common is already a tall order. Finding this within a smaller community of other queer women? That takes away about ¾ of the population. When I manage to overcome all of this, I still need to find someone who can accept me for who I am, illnesses and all. While my conditions make me no less deserving of love, they do make it harder to find.

I don’t want to be someone’s fetish, or someone’s pity project. I don’t need to be taken care of, or treated like some kind of romanticized teen novel about sick kids who fall in love. I’m just me. I’m a strong, smart, capable woman. I’m funny and empathetic and stubborn and sarcastic, I love art and dogs and hate birds and jazz. I’m me, but part of me, a big part of me, is the struggles I face every day as a disabled person.

I have faith that, one day, I will find someone. I’m young, and quite honestly, casual dating is still fun. But I do want something more serious. I will find a person who can accept me for who I am, and loves me through the pain flares and hospital visits along with the moments of joy and success. I happen to be pretty cool, and in no way undeserving of a healthy relationship. It’ll just take me a little bit longer. I have to put in a little bit of extra work and think things through a bit more. And that’s okay. I’m worth it, and so are all the other people out there who understand this experience. I’m here, I’m queer, I’m disabled, and I’m worthy of love.

Food Holidays and Feeding Tubes

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It was Canadian Thanksgiving this past weekend, a holiday centred around food. Holidays become, at best, a lot more difficult when you have significant dietary restrictions. The food, often an integral piece of the celebration, can become a source of disappointment or even stress. Food is deeply social; a universal experience that everyone can appreciate, a bonding point that lies at the centre of nearly every large gathering. Food brings people together; after all everyone needs to eat.

Eating is so common that it’s nearly impossible to imagine that some people, people who look no different from the outside, simply can’t do it. Some can eat with restrictions, some can eat with pain and nausea, some cannot eat at all. For these people, for myself, nutrition is consumed through alternative methods, but some of the joy of connecting with others over a meal can be lost. Acceptance of the gift of familiar flavours is replaced with awkward attempts at explanations as I try to deny what I want the most in that moment. Wanting to stuff myself while knowing it will hurt me shortly after sometimes feels like being on a diet that never ends: a constant test of my self control.

On a day dedicated to being thankful, I am infinitely grateful for my life, quality of life, and my loved ones. I can’t help, however, wish that there wasn’t so much focus on a single meal that I cannot fully enjoy. I hope that these days get easier with time.

Revisiting

Since getting my feeding tube, my time spent in hospitals has reduced dramatically. While I’m beyond grateful for the opportunity to live my life outside of institutions, the time away has left room for unease to develop. Situations that were once routine now again feel unfamiliar; sparking moments of fear and anxiety that are only compounded by past negative experiences.

I wasn’t prepared for the feeling of living a double life that would come with improved function. Most days, to anyone passing me on the street, tube aside, I would look relatively healthy and “normal”. On plenty of days, I feel pretty close to that as well. However, occasional appointments and problems still arise. With said occasional appointments, procedures, and problems, comes doctors’ visits and hospital trips, and visits to a life that I once lived constantly. Visits to a routine that I once thought might never end. Having been given a taste of the most healthy life I have led since middle school, taking back the “sick person” identity, if only for a moment, feels fundamentally uncomfortable. Explaining to people who haven’t known “sick me” that I still struggle is equally difficult.

Space from the medical system has provided space for some degree of fear and discomfort to redevelop (not that I’ll ever admit that out loud). After all of my negative experiences within those walls, in my ideal world I would never have to return. Truthfully, even in this world, I want to never return. I suppose that my next adjustment challenge is trying to find my balance walking the line between two worlds, and, just like all other challenges, I’ll figure it out in the end. For now, I’ll acknowledge my discomfort, and simply sit with it as needed.