Why do they leave? When illness pushes people away

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Evening hospital window view, October 2016

I’ve had a fair number of friends drift away these past few years. Maintaining friendships takes far more time and effort than one might think, and when you suddenly lose the ability to put in that time and effort, you inevitably lose connections.

It seems to me that this is particularly the case with teenagers and young adults, who generally have never had to grapple with the fragility of their physical existence in any significant capacity. Sick people make young people uncomfortable; they don’t know how to confront the unfamiliarity of illness, and they don’t know what to say to someone dealing with problems that they can barely fathom.

Plenty of young adults live busy, vibrant lives; they have work, school, extracurriculars and hobbies. Many young adults living with illness lack nearly all of this. When your entire life is dedicated to staying alive and fighting for something resembling a quality of life, that fight can easily become your entire identity, and the extras that you used to enjoy can fade away.

Chronically ill teens and young adults frequently lose support systems when they need them the most. Those who you thought would be by your side forever, suddenly remove themselves from your life nearly entirely. You’re easy to forget, when you’re barely ever in their physical presence and you’re too tired to reach out. You search online, one of the few worlds still fully accessible to you, for new people to connect, and sometimes you find them. Unfortunately, their “real life” worlds have also shrunk down to the size of a hospital room and a computer screen. You relate to one another through your struggles in ways that no one else you know can, and it makes the loneliness a little easier. But, stuck alone at home with yourself, you still mourn your former social life.

Maybe some people believe that it’s better to say nothing at all, than risk awkward silences or, even worse, say something potentially offensive. Maybe some are just scared of hospitals and illness in general, and can’t help but avoid it. Maybe it isn’t illness itself that pushes away friends and loved ones, but rather all of it’s implications and social side effects. Maybe all we all need, is a little more education and a little more compassion.

Creativity Heals

Every human has their own beautiful and unique experience walking through life. We see highs – weddings, birthdays, new love, good food and good friends; but we also see lows. We attend funerals, we fall out of love, we get sick, and we get injured. Sometimes we feel too much, sometimes too little, sometimes joy, sometimes pain, sometimes nothing at all.

Regardless of the variance in our experiences, should we choose to seek it out, we all have art available to us as a means of communication. Art allows humans to free our pain, joy, amusement, anger, and love from our minds and physical beings. Whether we are consuming and connecting with it, or creating and expressing, art is absolutely intertwined with our everyday lives. Visual art is displayed in nearly every aspect of media; not just museums. Graphic design is a rising field that allows for connection on new platforms in the digital age. Film allows for stories that would otherwise remain silent to be told with multiple forms of media simultaneously; while music, traditionally lacking a visual aspect, transcends all societal barriers to reach anyone who should choose to look for it. The most beautiful fact of all is that they can all intertwine seamlessly and never the same way twice, the projects as unique as the people who create them.

I believe that art heals on both ends of it’s consumption. For the creator, it can be a cathartic release of emotion, or an intellectual concept that fascinates them. For the consumer, while occasionally providing pure intellectual stimulation, it’s often a point of connection, a feeling of company and companionship, even if alone. While the trope of the tortured artist is, in my opinion, unnecessary and overused, the fact rings true that beauty and purpose can and do emerge from significant suffering, and that art, particularly multimedia projects, allow for that beauty and purpose to reach audiences who resonate with it.

I firmly believe that art saves lives, and provides purpose where a purpose may not otherwise be easy to identify. Creating gives direction to pain, and consuming brings comfort that physical beings cannot provide. Creativity, on all parts of the spectrum, absolutely heals.

When Darkness Is Not Your Friend

I find that traumatic memories are kind of like shadows, or if you believe in the paranormal, ghosts. You aren’t consistently aware of them, even though they’re always around, hovering just a little bit behind you. They wait until your guard is down to make themselves known, appearing only for a brief moment yet long enough to rattle your sense of security. Sometimes they come out of nowhere, sometimes you can anticipate them. Sometimes they’re sinister, sometimes they’re just present. They are a part of your existence, yet separate from it. They’re intangible, yet incredibly real.

Similar to shadows, my memories can envelop me at night. They might wake me from rest, or even prevent it altogether. They tend to find moments where my mind is idle and jump to fill the gaps, unleashing a tidal wave of repressed or forgotten memories. I’m learning to make friends with my shadows, to accept their presence and live alongside them instead of pushing them away.

I don’t think that anybody can go through severe illness and emerge the same human that they were before their world crumbled. Fear changes people. Long term frustration changes people. Losing independence and missing milestones changes people. Frequently, trauma is included in those changes. Memories that you thought were long forgotten begin to haunt you, and new anxieties emerge. You wake up in the middle of the night in a cold sweat with no clue why; you cry out in your sleep and your partner cannot do anything to comfort you. The ghosts wait until you’re at your most vulnerable to strike you the hardest.

There is no armour strong enough to keep the shadow of traumatic memories out. You can try to keep the proverbial lights on or run away to avoid confronting them; you can distract, you can numb, but they’ll always follow you, until you gather up the courage to sit in the dark and confront them.

Rephrasing Failure

Western culture teaches us to view failures as negative events, even as strikes against the quality of our character. Within the American Dream there lies an expectation that with hard work and determination, we will be successful. We idolize successes to an extreme, placing actors, musicians, scientists, engineers and artists who master their chosen craft on pedestals. If only looking to the media, these professionals appear to achieve overnight success with little effort. What is not seen, however, is the failures and rejections that they endure repeatedly, that every human with a passion endures repeatedly. Our society ultimately values end product over process, and brushes aside struggle when success occurs.

The process of working towards a goal, however, is the most beautiful piece of the puzzle. Why see failures as roadblocks when we could simply turn around and see the wide open door behind us? A key part of achieving big goals is maintaining perspective, and accepting that your initial plans will never be the plans that come to fruition. It is imperative to embrace change, and minimize catastrophic thinking. We can all live out our dreams, if we only retain the ability to adapt to unexpected situations.

Personally, my failures have shaped me, and I imagine will continue to shape me, in ways beyond what I could imagine. While incredibly infuriating, disappointing, and terrifying each time, with each setback I truly have discovered something new within myself and found alternative pathways to pursue. My failures, whether forced upon me by circumstance or due to personal error, have honestly been some of my greatest achievements. With each failure I believe that I have inched slightly closer to my true self, as they push aside my superficial ideas and reveal my true talents, motivations, and even desires.

Don’t get me wrong, as a self identified perfectionist failure angers me beyond belief. I have, however, learned to shed my tears and pick myself back up. I have learned that life goes on, and that I have the ability to, in a way, rephrase situations. I am beginning to gain the ability to recognize the opportunities presented which lie within rejection, instead of the opportunities lost. I have gained happiness beyond anything that I could have planned for from my failures.

When all of my friends left for university and I was left behind to tend to my health alone, I was admittedly angry and sad beyond belief, but it was also exactly what I needed at the time. I was able to try to improve my medical stability, and explore my passions and goals some. At the end of the year I chose what I believed to be the best place for myself to study, but was to be proven wrong in my planning once again.

When I realized that university was failing for me as an experience, I made the decision to return back to my hometown. I had a two week period before I could be picked up, and so I began playing my guitar more than I ever had in the six years previous. From failing at school, I realized that I could potentially have success in music or other artistic pursuits. I found a new passion, and more happiness than I knew I could have. My failures built me into my current self, and I could not be more grateful. We all could stand to embrace, or even learn to love failure a little more; after all it is the foundation upon which we build our success.

Monthly Roundup: July 2018

July has been undoubtedly one of the busiest months that I can remember having in the past few years. This is in sharp contrast to July 2017, which was spent 50% in hospital and 50% in bed at home. I am working two jobs, one at a desk testing software and one “on my feet” coaching kayak in a program called PaddleAll, for people with disabilities, at my local sprint canoe club. In addition to this I have been pursuing various creative outlets including this blog, monthly video scrapbooks (see above), honing my guitar skills (now that my left hand is in a period of being less weak), and trying my hand at songwriting (maybe some will eventually see the light of day on here, who knows). I went to many live music events, particularly since the bar/coffee shop near my apartment has someone playing nearly every night. Though I didn’t think it was possible, I fall more and more in love with live music with every event. I started to get back into rock climbing in between everything else, though admittedly it’s taken a bit of a backseat. I’ve had some health crashes, but nothing so devastating that a couple of days at home cannot fix. Tube feeds are a true blessing, I will never be able to express enough just how much stability has come into my life from it. They say a picture tells a thousand words, so here’s a bit of the world through my eyes this month:

I hope that you all have had a lovely July as well, and, if not, that August brings you better days <3.

Let Yourself Be

If I’ve learned anything in the past six years, it’s that change is the only constant in life. We choose change sometimes; we switch careers, we go to new schools, we pick up new sports or hobbies. Sometimes, however, a meteor of change hits us seemingly out of nowhere, and we are forced to make potentially pivotal choices.

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Children’s Hospital Emergency Room visit c.a 2015

Pre-illness, I defined myself quite rigidly, as many young teenagers do. Having let my perfectionist tendencies discourage me from artistic pursuits around the end of elementary school, I decided to be An Athlete and committed to it. I pushed my body to the absolute limit every day, frequently intensely exercising upwards of 14 hours a week. My physical strength became my identity, the leading feature by which I and my peers defined me. None of us saw any problem with pigeonholing me in this manner; until that feature was forcefully stripped away from me. My physical being deteriorated; the biceps and tan that I had been so proud of replaced with protruding ribs and pale, discolored skin. And I felt lost.

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Adult hospital admission for severe malnutrition c.a August 2017

With every traumatic hospital experience, anxiety sank in a little further, my former friends drifted a little further away, and, with no identity outside of my athleticism to chase, I floundered a little more.

When all of my high school friends left town to pursue post-secondary education, I was left behind having not even completed high school and too ill to leave my bedroom in my parent’s basement. At this time, art came back into my life, and I started to experiment with sketching and watercolor paints. On nights that I was left alone with my thoughts and my pain, I would scribble and listen to music. I continue that habit to this day.

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Hospital doodle c.a August 2017

Slowly, I began to realize that my painful experiences and thoughts could hold meaning and that my body didn’t have to define me. I realized that I had the ability to exist within single moments in time, and create beautiful things from the lessons I learned from them. I learned to define myself less rigidly. I learned that my failing body couldn’t take away my ability to form beautiful human connections. I learned that simply letting myself exist is often necessary to get through hard times.

We ultimately cannot control every aspect of our lives, but we can control what matters: our reactions. I learned to let myself be; I hope anyone who reads this can find the courage to do the same.

My Top Nine Soundtrack For A Bad Day

Bad days – we all have them. From grumpy or sad moods to paralyzing anxiety attacks and nerves over medical procedures or big tests in school, humans are bound to feel “off” sometimes. While some people lean on movies or video games or books,  I personally often lean on music during hard times. Of all of the methods that I’ve tried to escape from everyday life, music has saved me every time. I find that I form deep emotional connections with songs that I put on repeat through my headphones during particularly hard times, and that re-listening to them during better times has the ability to conjure up old emotions. The songs that support me through the rougher periods of life become friends of sorts to me – living, breathing, evolving beings with their own emotions and personalities. Coming up with a mere top nine list (let’s be real, top ten is so cliche) of songs that have supported me through life’s dark patches honestly feels like trying to keep a tight leash on about fifty eager puppies, but here goes.

  • I Will Follow You Into The Dark – Death Cab For CutieScreen Shot 2018-07-14 at 6.52.20 PMMy emo friends will know this one for sure. The entire Plans album features a quiet, contemplative atmosphere that wraps you up like a warm, sad blanket. For those moments that I want to take a moment and wallow, this particular song always does the trick.
  • Holy – Pvris Screen Shot 2018-07-14 at 6.53.13 PM.pngThe strong beat featured in the intro to this song off of Pvris’ debut album grabbed me the first time I heard it. If I need a distraction and a heavy bassline to lose myself in, with angry tones to boot, this is my go-to song. Holy holds a key place in my heart, as the song that came into my life and kept me sane and grounded throughout most of my thirty-six day hospital stay over the summer of 2017. I hope to thank this band for all that they don’t know they’ve done for me.
  • Afterlife – Ingrid MichaelsonScreen Shot 2018-07-14 at 6.56.12 PM.pngNotalgic vibes accompanied by a throbbing beat is the best way to describe this tune. I’ve depended on Ingrid’s music probably more than that of anyone else through the years, so to only include two of her songs in this list shows significant self-restraint (not to brag or anything). This satisfies my need for a beat to get lost in and for lyrics that give hope for better days ahead.
  • Somebody Loves you – Betty Who Screen Shot 2018-07-14 at 6.56.56 PM.pngThe best way to introduce this is probably to link to this video https://www.youtube.com/watch?v=l4HpWQmEXrM , which has brought a smile to my face many times in the days before knee surgeries. If you need a smile, this is a solid, pop-ey, upbeat go-to. Betty Who promises a dance party at every performance, and this entire album does not disappoint.
  • Heavy – Linkin ParkScreen Shot 2018-07-14 at 6.58.33 PM.pngFor Linkin Park fans, this album holds incredible meaning, as the last public gift that lead singer Chester Bennington gave to this world shortly before his death. To me, the song conveys a desperation for hope unlike anything else that I have ever heard. Bennington describes the difficulty involved in letting go of one’s personal demons with rich harmonies and a soaring chorus, and certainly helped me feel a little less alone in dealing with the skeletons hiding in my own proverbial closet.
  • Waiting For The End – Linkin ParkScreen Shot 2018-07-14 at 7.02.55 PM.pngFollowing along in my desire for music with a strong beat that I can lose myself in, we have what could very possibly be one of my all time favourite tunes. Good times and bad, this song always delivers on pumping me up for whatever I need to face. If auditory courage exists, you can find it in this song. The complex layers as the song builds provide plenty to focus in on and separate yourself from the outside world, making this a key tool in my bad day arsenal.
  • Shake It Out – Florence And The MachineScreen Shot 2018-07-14 at 7.03.26 PMHas Florence Welch ever failed to deliver musically? This song has returned to my regular bus tunes rotation lately and I couldn’t be more pleased. With her strong, sweet voice encouraging me to shake off my inner demons, I find courage and hope every time.
  • Queen of Peace – Florence And The MachineScreen Shot 2018-07-14 at 7.11.32 PMThis is honestly just a beautiful song that I will always love. I encourage you to watch the music video here, as I don’t think I can do it justice on a mere nineteen-year-old’s blog post. Sometimes, you simply feel sad and want to remind yourself of the beauty that exists in this world.
  • Ghosts – Mike ShinodaScreen Shot 2018-07-14 at 7.19.06 PMFirst and foremost, major kudos to Mike for getting back into the music game after the massive loss that he has suffered. For those who don’t follow the alternative rock group Linkin Park, long suffering lead singer and cofounder Chester Bennington passed away due to suicide last year. Cofounder and rapper of the group, Mike Shinoda, has recently released his debut solo album, addressing his grief and guilt in moving on. While I honestly love the entire significance of the album and cannot definitively choose a single that stands out to me, Ghosts seems to best represent the themes as a whole. I highly encourage you to head over to iTunes and support this man in his journey moving forward.

As Christoper Zara said, great art comes from great pain. While not all, many of the artists listed here communicate their near indescribable suffering, and from that, comes the beauty of connection to people around the globe. Through their music, these people have brought hope and joy to many, myself included. Some day I’d like to thank them for their vulnerability.

Tough Times and Tattoos

The year of my eighteenth birthday, on New Years Day, I got my first tattoo. A relatively small piece composed of a mountain scene with trees and a sun, this ink poked into my skin over the course of fourty-five minutes represented my first recovery gift to myself. To me, as cliche as it sounds, the mountains on my arm signified all of the metaphorical mountains that I had overcome to earn the moment and would have to overcome in the future. I told myself that it was a simple gift: a one-time event to commemorate my inner strength. Hah. As I soon found out, tattoos are like Pringles, albeit very expensive Pringles; you can never have just one.

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Freshly finished first tattoo c.a January 2017

In my research and attempts to make sure that I didn’t “make a mistake that couldn’t be erased”, I learned about and fell in love with tattoos, independent music, unnatural hair colours, and many other facets of punk/alternative art culture by which I now frequently define myself. Having fought for the athletic identity that my body would no longer let me claim for so long, and nearing acceptance that my former life was long gone, the bits of ink embedded in my skin bridged me to embracing new interests and a shifting identity.

Fourteen months and two hair colours after my first piece, while back in my hometown for the weekend, I made a sudden decision to receive my second tattoo; this time a much larger commitment, and more visible. A piece of flash (an entirely artist created piece, up for grabs for the first person to claim it) showed up on the Instagram of a woman who I had been following for quite some time,  and I decided that the moment was right to dive in and commit to my relatively newfound interest. I sat for about three and a half hours this time around, loving every second (and occasionally napping). What followed was an arm adorned with a piece of art that I fall more in love with each and every day, in addition to boosted confidence to follow my passions and be my own unique self, inside and out.

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Both tattoos together c.a May 2018

I now find myself to be a far cry from the shy, stereotypically presenting teenage girl in sweatpants that people knew in high school. You can usually catch me with big glasses, dark shirts and biker jeans or high waisted shorts, cropped and dyed hair, and of course my ink on show, constantly planning more (and waiting on the money to execute said plans). You can often find me taking videos, writing blog posts, making music, listening to music or seeking out live music, having lost my conviction that art “is not for me”. Art is for anyone who wishes to let it into their soul. And for that realization, I have my tattoos to thank.

 

…….

Check out my lovely tattoo artists!

Celyne (bird and flowers): https://www.instagram.com/celyne.begin/

Sarah (mountains): https://www.instagram.com/liberty_ordeath/

Creating, Creating, Expressing

Within the introspection that I mentioned in my last post, I’m finding a creative energy that I didn’t know I had. I feel myself realizing that I have life experiences that not many other young adults my age share, and that my life often takes several drastic turns throughout the course of even a few months, much less a full year. I have also realized that the young adults who do share my experiences are massively under-represented in creative spaces, and frequently entirely publicly defined by their illnesses when they are represented. As a result, I’ve started a few projects of sorts, intended to express my personal experiences of the past few years, document current ones, and maybe connect with other young ill people who wish to be seen as human beings who are as equally complex as their peers. If nothing else, this should provide me with virtual diaries to look back on. A few months ago, I started documenting and creating monthly videos, set to a favourite song I had been loving at the time. As many of the clips that make up these videos contain images of my family (who do not wish to be on YouTube), I’ve compiled some clips from the past few months into one video to post here:

You may have also noticed that I’ve been increasing the frequency of my blog posts, which I fully intend to continue doing, as well as increasing the frequency of my Instagram posts (@sabinagrossman, for anyone wondering). I’ve also been writing song lyrics, which I may or may not eventually set to music and post. My feeding tube saved my life, now it’s time to start truly living beyond the walls of hospitals. Whatever may come next, these posts should be interesting to look back on.

I hope that you agree ❤

June 2018 – Introspection

June has been filled with changes for me, some new, some victories, some surprises, some simply a return to “previous settings” of sorts. I moved back to Ottawa, I started at a new job at a software company, I returned to an old standby – coaching the PaddleAll program at the canoe club, I registered for classes at a new school, and I began packing and planning for my new apartment (move in should be July 2018). With all of these changes, I find myself reflecting regularly on the situations which surround me. The additional energy that I have gained from tube feeds, I find, leaves me with energy for introspection and self-improvement.

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Reuniting with a former elementary school teacher (June 2, 2018)

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First time back in a sprint kayak in 2 years (June 25, 2018)

For the first time in a long time, every decision I make is being made with my own wellness in mind. I am done making decisions for the sake of others instead of myself, and decisions for the sake of what society tells me is expected. For the first time in a long time, my choices feel right. Being closer to my family, and to my medical support, feels right. My community being happy that I have returned to them feels right. My new school program choice, computing and applied mathematics, feels right. A school which allows me the flexibility to take the courses I need, at the time I need, feels right. The distance from the, occasionally toxic, competitive culture at Waterloo, while maintaining the friendships I made there through the internet, feels right. The stable nature of a school which does not require it’s students to be constantly on the move feels right.

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Stopping to admire the sunset (June 24, 2018)

The past few years have been an absolute whirlwind, and I am finally feeling a sense of true peace. I have time to create, and emotional space to appreciate the beauty which surrounds me, and I absolutely am taking advantage. I hope whoever reads this finds the motivation to do the same.

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New music and evening walks – it’s the little things in life (June 8 and June 27, 2018)