Thursday, September 25, 2014

The (Quite) Major Faults In the Red Band Society [Review]

I feel as though I should write a disclaimer here, so I will. I spent most of my life in hospitals. When I was growing up, my brother was constantly inpatient. When I was fourteen, my father suffered a major stroke and I practically lived in the hospital with my family from August to November. I, myself, have spent my fair amount of time in hospital. I am a chronically ill/disabled adult with autoimmune disorders.

Now, with that being said;

This show has absolutely baffled me. Not because I am confused by the dynamics of hospitals, how patients live together, or how nurses function. I am baffled by the basis of the show itself. Not only does it paint a false representation of hospital dynamics, it paints a false representation of ill people. On purpose. But, I will get back to that in a second. Or maybe a few minutes. I am going to break this up into parts. And maybe, that will make this literal shit show of a television show easier to digest for those who haven’t seen it so you do not need to witness it. Also, I have done my research and I am well aware the lead writer/director was inspired to write this show because her brother spent his youth in a coma. Which only baffles me further as so much erasure goes on for someone who witnessed this first hand.

Romanticizing a Hospital


Yes, that’s right. A show has successfully made a hospital look like a livable, workable, healthy place to live! The teenagers on the pediatric floor are allowed to excessively decorate their rooms. Now, I am not just talking a framed picture or two. I am talking sofas, record players, paint on windowed doors (that you know, are important in case SOMETHING HAPPENS AND MEDICAL STAFF NEEDS TO SEE), you name it, these kids have it.


Not only do they have overly-decorated rooms. 

They have a school.

If you’re like me and have spent any time in hospitals, you will know a few things.
1) You cannot hang things in your room, especially around or near emergency equipment.
2) Hospitals and patients alone struggle to even get tutors to attend. It took my brother three months in a hospital to get home schooling. By the time they cleared it, he was already home.

Basically, what they did was remove the hospitalization from… a hospital. They deleted the “ugly” parts of hospitalization (gowns, IV poles, all the lovely bodily functions, greasy hair and frowns) and replaced it with. Well. Nothing. I say nothing because the only indication that these children are in a hospital are the nurses that walk and work with them and sometimes the spare mention of their illnesses. The girls have perfect hair, perfect clothing, makeup. The boys can leave the floor at will, apparently smoke weed in a closet, etc.

Instead of showing a hospital as a place of healing, battles, arguments with ignorant doctors, pain, frustration, they showed what they imagined a hospital is for children.

Not a hospital.




It’s All Bubble Gum and Rainbows If You Squint Hard Enough

Well, since we’ve removed the hospital from the hospital, why not add some quirky characters to soften the blow of the true reality of any illness? We have, of course, our “silent” voice over hero, Charlie. He is a child in a coma. Yes, even a child in a coma is romanticized in this show you have been warned. We then have our “wise elder”, aka a rich man who is mentally ill (hypchondriactism) and is taken advantage of (they mention they let him live in the hospital because when he dies he is giving them all his money) who also smokes pot and has a rather spacious apartment. In a hospital. Let me say that again.


A spacious apartment.

In a hospital.

Why do we need these characters in a show about sick children, you might ask? Why are they objectifying true and terrifying conditions with heaven like hallucinations where Charlie can communicate with the others? Why are they ignoring simple parts of hospitalization? Still, why do we need these characters? Well. We don’t. At least not spoonies, the terminally ill, or disabled.

But able bodied people need reminders that it’s not so bad. That living a life in a hospital is the equivalent of a five star extended stay hotel holiday. That if people with personalities thrive in a critical environment, maybe they don’t need to be so scared of becoming ill themselves. It gives them more comfort when they scoff at someone, especially a young someone, using a mobility aid. None of this was for the ill. It was for the abled.


Apples and Oranges

Now, I am going to compare this to House MD. This show did have it’s own (sometimes maor) failures, however, they did not remove the hospital care from a hospital. When we see the patients enter the ER on House, we see they are put in gowns, hooked to IV’s, and House decides whether to take on the patient or pass them on to another department. Far more like the reality that many of us sick folk face.

Now, we see the ugly parts of a hospital on House. We not only see the bodily fluids (exploding colons, anyone?), but we see each patients (and sometimes the doctors themselves) struggle with the idea of death, permanent pain, entering emotional turmoil when death is probably the end game. The show is led by a doctor who solves medical mysteries because he is afraid his pain will not end. Not only a disabled doctor, but a doctor with a chronic pain disorder, mental illness, and addiction.


Spoiler alert if you have not seen the series finale of House, we also have a secondary lead character, Wilson, who is diagnosed with a terminal cancer. And from there, we are left watching them work through the inevitable questions of “Will this end?” and “I am scared.”, “Please tell me you love me”.


We’re shown true emotion, we are shown what it’s like to be terrified by your own body.





In this show, children also die. Because at the bottom of it all, children do die. Teenagers, Young adults, adults, do die because of their illnesses. And that is the raw and scary truth that Red Band Society seems to want to erase. Simply because it is not an easy pill to swallow.




It’s All Inspiration Porn And You Don’t Even Need to Open Your Eyes

What we see in this show is primarily what we are shown on major news networks when sick children and teenagers are made into editorials. The happy, blissfully content children (or so they seem) are so often celebrated because seeing a sick child/teenager happy and “thriving” is more socially taken because, again, abled people want that reminder that it isn’t so bad. These children are seen as fighters (and they are, don’t get me wrong!). Though, in it all, we so easily forgo mentioning those children and teenagers who cry day and night wondering if it will get better. If they are a burden. If this is all that was meant to be for them while they hate their bodies and yet still fight on, just like the happy kids. We aren’t show any of this because these kids are just “harder” to look at. To know about. Simply on the basis that it is honest. A reality for many.  


Riding on The Coattails

I don’t find it ironic at all that the first look I had at this show was during a screening of The Fault in Our Stars. It was intended to ride on the success of romanticizing sick children. Now I know many people, including myself, have qualms about John Green and his writing, but at least John Green worked in a childrens hospital. He actively engaged in conversations about life and death and pain with a terminally ill fan of his, Esther Grace Earl. He shared his struggles openly about questioning life and death and how it isn’t fair for children and young adults to have to go through this. And, to be fair, in his book and the film that followed, we’re shown a hospital. We’re shown pain. We’re shown emotion.

Red Band Society lacks any true or seemingly authentic emotion at all. It thrived to be in relation to TFiOS, yet failed miserably as the watcher may feel close to nothing but the good old warm and fuzzies instead of uneasiness or even terror for these teenagers.


Final Words

Red Band Society has done nothing but romanticize the idea that illness is beautiful because it is “unique”. A problem we are now seeing grow within our media. It is basically a slap to the face for any of us who are ill. While these kids are climbing to the rooftop of the hospital for a party, many of us question whether we can even get up and down the stairs in our own homes. When our friends try on 24 different outfits, we are struggling to decide if we are even up for getting out of bed. If the pain and fatigue the next day will be worth it. We see the characters in this show drinking alcohol, we are stuck with the dilemma “can I drink on this medication or will my friends or family find me unconscious?”. We are not gifted the blissful ignorance of healthy children/teenagers/young adults.

Honestly, the best quote I can give is from the character Amy from In The Flesh, who says about her terminal cancer; " I'd been benched before I even got to play the game." I feel like this singular line in a series is far more relatable to anyone with an illness then what Red Band Society produced in a full episode.

We are different from able people, something many able people do not want to admit.

This show builds up healthy people, yet beats down the ill. None of this show was built on the intention of us watching, it wasn’t even a thought. What this show is built on is many ableistic rituals that many of us face daily.

And that’s the hardest pill to swallow.

Friday, September 5, 2014

And Many Happy Returns

 I would give a lengthy explanation to my absence from my baby that is this blog, but I figured to keep some of the more gory details to myself while indulging in writing here as I have missed doing so terribly. What is happening, in the shortest of explanations, are quite large life changes of which I was not ready for. Nor do I believe anyone in my family was ready for. But, as we all know, life doesn't always agree with what plans may be, but, however, throws us in head first with a bit of a good luck pat on the back and a deflated life jacket. 

In the time I was away, my father had another surgery, I had a birthday, my baby sister went away to college, and many other changes. I have taken to chronically drinking out of a map mug gifted to me by Emily, who I interviewed on this blog. My obsessive compulsions have brought me back to everything in 4 x 4. I have been, fully consciously, been making myself more comfortable at a time when I should be extremely uncomfortable. Minds are amazing things. They can be self destructive, but they can also build ways to cope when life is a upside down. 

I have spent my time donating things I no longer need, but other might. Writing quite awful poetry, and going to doctors appointments and leaving rather frustrated. I have, however, found

comfort in communicating with my sister, my friends, and taking each day in five minute increments. I have also started taking more photos, some of which you can find here. 


I have also become a writer for the wonderful blog Positivty In Pain which can be found my clicking the name. And I am honored to take part. 

I cannot promise this blog with go back to how it was quickly, if at all. I am already planning changes (though interviews will remain), and I am happy with those changes.  I really do hope I will become more active here, as I do miss it. It felt wonderful to write this up, even if it is rubbish. 

I hope I will be back soon. 



Thursday, July 31, 2014

Gray Matters More Shop + Support!

It has finally opened! Thanks to the help of my amazing friend Lui, The "classic" Gray Matters More Logo can be found Right Here in a variety of shirts, hoodies, prints, and soon to be mugs + Pillows!

I have done quite a lot of shopping from Society6 and each and every product is made with such care and quality that by the time you get lets say, a T-shirt for example, it slowly becomes your favorite piece of clothing. As someone with a few shirts from them I can say they are true to color, size, and are EXTREMELY soft. 

Remember that half the proceeds will be going to The Adult Onset Still's Disease foundation! 

Thank you so much! As I have graduated my program, and things are settling at home, my normal blogging scheduel will resume ASAP. Thank you for sticking with me, guys!




Saturday, July 12, 2014

As It Does, Life Takes Over

I have missed posting here dearly. But, alas, life happens. And sometimes the things in life aren't pretty. Or, as writers see it, aren't worth writing about. That being said, writers sometimes confuse worth with inability to put a current struggle into words. This was my case. And as exhaustion took over, I lost sight of some very important facets to my current status and well-being... and well, things I love.

Like writing this blog. 

I am not immune to being taken over by outside, unpleasant forces. Having a parent in a hospital is always difficult. Having a parent who you haven't always gotten along with can be a more difficult en devour all together. It has been a week of emotions that refused to stay still, stay in one place at one time. Like others in my bloodline we worry of outcomes, tests, results. Surgeries. A world, your world, your small little world can go through so many changes in such a short period of time that your brain tries to fill in the blanks. Thinking back, "what could I have done?". Thinking forward, "What could happen?". There isn't a shame to this, we are humans after all. Our brains struggle to be in what a friend of mine has called "Isness". 

What is happening.
What can happen.
What we can do. 
What I can do.

Isness. 

Hospitals aren't usually a place where you're filled with grand ideas or are graced with poetic integrity. Rather it, and less "romantically", it is a place where people fuss. Pace the waxed floors, apply hand sanitizer 12 times without noticing, adjust their family members pillows, sit and wait. 

And wait.
And wait.

And
Wait. 

I had no brilliant ideas there, nothing worth noting. Just that the smell of hospitals never change or that the lights or too bright when a lot of lights are going out. And then I wasn't able to go to hospital anymore. As that tends to happen when your doctor finds out, and you're on immune suppressing drugs. And that has lead me to being home alone for grand amounts of time trying so badly to write about this. Make it mean something. Give it a life.

I couldn't.

I avoided "isness" and stayed in my own head where nothing could get in or out. I was angry at the world, dramatically stamping when I could. My father has had one surgery that has lead to a hemodialysis and that has lead to a second surgery. No matter our past or my frustrations with him and his sometimes (always) lazy approach to his treatment, he is still unwell. He is still my dad. I am still his child. And being alone with these thoughts could either be dangerous or soothing but there is no in-between. 

It all, simply, just is.

I have no advice to share. I don't have any clever word plays up my sleeve. All I can say is when life happens it's alright to be afraid and hide away. People always want other people present, but it's never that easy. Come out when you're ready. The world hasn't stopped turning, so sadly you'll have some homework. But you'll catch up. 

As for me I will be here. There. Gone. And back again. 

And that's okay.

- Spencer.
p.s. normal posting shall resume shortly.

Friday, July 4, 2014

An Apology For the Radio Silence

Hello, let me just blow the dust away from this blog with a short explanation. Despite my own popular beliefs, life happened over the last week! My little sister graduated from high school, we had dearly missed visitors at our home, and when chronically ill and a bit "delicate" with sleeping patterns, I had to take a small vacation from here without notification. 

But, things will be going back to normal! Albeit, somewhat late. An interview will be posted, a personal post, and maybe even some photography. But next week, I will be back on my normal posting scheduel as the festivities here were concluded with my sister getting her first tattoo and me taking a two day nap. 

I missed being here. It's lovely to be home. Here is photographic evidence of that fact.




- Spencer

Saturday, June 28, 2014

[Personal Post #3] Dear Sister, You Are Possible

Dear Sister, as you are aware, I am a far better writer than speaker. So this will be my words to you on the eve of your graduation. I have a feeling of happiness mixed with apprehension. I am so incredibly proud of you, but I am stuck worrying how I will live without you after having you at my side for eighteen years. 

You worked so incredibly hard to be where you are now. There hasn't been a moment where you decided you weren't good enough to succeed. You succeeded all because of you. Of your work ethic, your tenacity, your blatant bravery. It was, in a poetic sense, a slap in the face to all who doubted you. A ferocious one at that. 

I simply want to tell you that you, yes you, are possible. 

I know you may be feeling a sense of doubt. You must be nervous. There is a whole world out there waiting for you! I want to tell you that it is okay to be nervous. It is okay to be scared. It is okay to feel that sense of doubt.

You are possible. 

I have seen you grow from infant to an incredible young adult with a good head on her shoulders and a sense of direction any "proper" adult would be envious of. Another has seen you grown. And I know you must miss him even more than you normally do.

That's okay, too. 

Missing someone to our core is the essence of love. I cannot speak the words he would speak to you today, or tomorrow, even the next day. What I can say is that our brother adored you and believed in you so fully. He would be, and is, so incredibly proud of his baby. I won't ever be half the older sibling he was to you, but know that I am so incredibly proud, too.

You managed to complete a year of schooling on top of a full time job when many of us fell apart. You may have fallen apart too, but it never stopped you. You kept fighting. I have no words to properly depict how you managed this year. A full time job, full time schooling, a massive loss, massive health scares. You threw that anxiety right back into the face of life, and carried on. 

You are more than possible. 

I will miss you terribly when it is time for you to go. I will miss our time together. I will miss you, my best friend. But I know you will be getting out there and experiencing so much. Learning so much and taking in knowledge to apply to your life that I could never give you. 

You aren't just possible, you are. A possibility is a perhaps. You are, my sister, far more than a perhaps. You are a security on this growing extension of yourself and your mind. I do not doubt for a moment that you will take advantage of this change in your life and again prove all doubters wrong, and sometimes prove yourself wrong. Because sometimes we think we are less than, and that's okay too. Take it from someone who doubts themselves daily. Proving yourself wrong is one of the greatest feelings. 

You will be brilliant in all you do. And tomorrow, when I see you walk that stage to take your diploma, my heart will burst with pride. I will be flooded with affections for you. I will remember helping our mom teaching you how to walk and apply it to how far you have gone, and how much further you will go. 

All because you are you. 

Congratulations, my baby sister. May the world, as confusing and scary as it can be, take you in and remind you that your worth is much greater than you will ever believe, and that you will be a change to this world that is so greatly needed.

Know we all love you. 

Congratulations. You made it. You survived. 

- Spencer

Thursday, June 26, 2014

[Interview Thursday #4] Zee, The Bright Young Thing

Now, I will start this with saying my adoration for this person may be leaning towards biased. With that being said, I am also brutally honest. Which is why Zee and I function so well together. She saved the day in terms of interview needs, so it is only fair I do this beautiful soul justice. 

"Uhm... Trees inspire me. I know that sounds really stupid." We
jump right into it, and I ask what inspires the British eighteen year old. She seems embarrassed at first admitting what is simple, yet understandable, then continues, "Trees and the sky and clouds. Just those things.".  

None of this surprises me. There is a lightness about Zee that is made
evidently clear when you speak with her. Physically, you feel lighter. More engaged in conversation. Comfortable. As if this conversation isn't just a temporary tactic of exchanging words for the sake of talking, but rather that there is depth here. There are things to be learned here. 

She does fall into the gray areas of life. Though, as she explains, the beginnings aren't always pretty. "I was in year four, so I would have been eight or nine. I just remember being at school, which I hated. I would get psychosomatic illnesses just from stress. I never really wanted to be there. I noticed it first then, when I tried to hang out with people I really liked, but they would always shut me out. And that is when I starting catching on that there wasn't something normal about me."

"Looking back now, I have a different perspective obviously. I can look back at it and think 'yeah, that was sad', but also realized it was a defining point in my life. I was becoming who I really am. And if what I really am is different from anyone else, I think that's fine. I am fine where I am now. If anything, I consider it a good thing. And I like who I am."

When I first began speaking with Zee, I assumed she was older than she is. I thought, was fully convinced in fact, that she was at least twenty-one years old. There aren't many eighteen year olds who carry themselves so well. Who can explain the complexities of themselves with an amount of ease.

"Not being in the same kind of environment most eighteen year olds are in, not growing up like everyone else in the sense that I barely went to school. I then dropped out of school half way through my second year of secondary school. I just turned thirteen, because of bullying and stress and anxiety. And having grown up with having being such an outcast, you know, it's bad enough being one in school, but living in the same place and having people knowing I didn't go to school."

 "It made me more empathetic to other people. I went through all the social exclusion, with no help, no one there for me. It made me grow up faster than others."

 Zee has a way with working her own mind around her situations. Finding a way to put words to thoughts. It is obvious that she grew up quickly. But like many who feel their childhoods were rushed, or skipped, I wondered if it was a conscious decision and not forced.


"I was pretty rushed into it. I never really got a proper teenage experience. I wanted to be with my friends, and I wanted to be in school, that carefree-ness. But battling depression and anxiety so young, it forced me to grow up. It forced me to deal with these situations where I didn't know what the hell was going on."

Zee is very introspective. I do not fully agree that this was simply learned (of course, learning helps) but that she has always been this way. It is a rarity to speak to someone who is fluid in their experiences, struggles, and their ability to realize their own internal improvements and how they effect the changes in her current standing in day to day life. 

"Everyone struggles with this question," I say, probably a bit too sure of myself. "So you may, too. I am sure of it.". The question of naming things one is proud of is one that brings me to either a long span of silence, or a shorter one. Silence none the less.

As with a lot of things, I assumed rather than look at the type of person Zee is.

"My tenacity," she answers quickly, "My ability to keep trudging through life even when I don't want to."

"I always think back, and I am proud of myself for that."


Tenacity is a word I would use to describe her. She is, without a single doubt, a person who willingly continues, even when life seems to become unmanageable. It was one of the first traits I noticed about Zee myself. Her bad days are, yes, bad. But she will wake up the next day ready to take it head on again, even if she is unsure of the final result.

"Oh boy," I am met with when asked what she loves about herself. "I love my hair, I like my sense of humor... Two more, okay. I like that, generally, I am a good person. Oh, I like my tattoos!"

I do think, in the society that young people live in, we become aware of not only outside fears, but fears that take place internally. We learn that sometimes our thoughts can be a frightening common place in the middle of the night, or a rather random part of the day. When it comes to a person like Zee, though, I felt it was a good question to ask. 

"I fear that my OCD will stop me from living my life the way I want to. I fear that with any progress I make with my mental health, I am going to let myself fall back into the same patterns I keep finding myself in. That my impassivity will lead me to make really stupid decisions. That my anxiety won't let me escape." 

I believe it is a common ground, especially with mental illness, that one thinks we will be our own cause to our own downfalls. It can be all consuming and constant, like a pulse you can't tame. Being honest about these fears is what brings forward our ability to take these fears apart and construct things, find things, that we love. And to love them wholly. And well. For comfort.

"I think it is true, I threw myself into photography pretty soon after all my mental health issues really set in."

As you could all probably assume, I am a curious person. Curious about people and their individual experiences. This means, with this platform, I am given the ability to be nosy. To indulge that part of myself that wants to know everything about everyone. I love learning of others childhoods. The memory that comes to mind when they first think of the word it's self. Zee is no exception to the rule. 

"I think it was going to my great aunts house, I was with my dad and my brother, and I was pretty young. Maybe ten. And we went on a picnic in this giant forest area by her house. I remember just walking through the trees, and looking up, and seeing the light coming down through the trees. It was just so beautiful. I just felt really... at peace with everything going on, even the things I couldn't understand. I just felt really, really happy."

 "It was just beautiful."


I think Zee could be given the most simplistic topic, and go deeper than the typical person. She would be able to deconstruct the idea of a paint color for a room, any room, and get to the root of why it was chosen in the first place. What memories are brought forth, why it's comforting, or why it is appealing. But she would do it in such a way that would leave one thinking further into their choices, themselves as a whole. And that is a talent I rarely find among peers. Especially in this age group. 

"I feel totally comfortable being in the gray area. I'm glad I am in the gray area, I don't think I'd ever survive being in the black and white. It makes me think of last year. I went to see Darren Brown. He said to the audience "If there is anyone here who feels like they're not like everyone else, like an outcast, then don't worry. Because people who think they're cool, they grow up to be boring people. All the individuals, who fall into the gray zone, they grow up to be the more interesting, and create changes to the world."

I ask Zee, admitting I am a "little scared" with my next question. What is love to you?

"Love to me is being comfortable. Just not having any of the
anxiety of being with that person. Just feeling totally comfortable. Which is what I have with you. I just want people to know!" Which leads to a giggling match of sorts. What can I say? We are only human.






Q: You can give one piece of advice to others that fall into the gray areas of life, what would that advice be?

A: Don't let other people make you think that it is not okay to be different. It is. It's just being who you are, if who you are in this gray area, don't let anyone think that isn't okay. Basically what they are saying is "It's not a good thing to be you", when it is! It's totally okay to have mental illness, to have physical illness. Don't ever think you have to change yourself and be what society wants you to be, because that will just harm you. Just let yourself be okay being you. Because it's a good place to be.


Yes, yes, you can all say I am biased here in what I am about to say. Though with Zee's current teachings, It's just fine for me to be this way. Interviewing a stranger is one thing. Interviewing a partner is a whole new experience I've never had. Though through this process I have learned so much more. Not only about her, but about how life can be seen. She is an intellegent, willing participant in understanding ones self and putting that forth in her live. Turning a thought into action. She is a point of enlightenment in what can be a messy life. Turning what society deems as negative, into positives. We may be ill, yes, but that does not mute our voices or lessen our dreams or intentions. 

I hope the world could fight as she does. I hope all of can out outside today, look up at the trees, and let the light flood us. Cleanse us of current stresses and pain and give us a minutes clarity. Most of all take from Zee that even in our darkest moments, we are fighters. And we will be okay.

She is truly a Bright Young Thing. And I couldn't be more thankful for her. 


- Spencer