Savior Syndrome

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Savior Syndrome

Growing up I wasn't allowed to watch Disney princess movies. My mom hated the anti-feminist, body shaming, heteronormative messages the plot lines pushed. I didn't like this rule as a little kid and was ignorant to the issues, but now I'm beyond grateful. Instead of being raised in a household that furthered the "Damsel in Distress" complex, I was taught to be independent.

The idea of waiting on someone else to rescue me was completely foreign, so when I first encountered what I have now coined as "Savior Syndrome", I was baffled.

Savior Syndrome is when a man believes it's his job to come and save a woman, take her away from her terrible life, be the answer to all of her problems, and eventually become her world. This is extremely prevalent with sick chicks because of the way media fetishizes and romanticizes illnesses and disabilities. 

I am a human being, a very sick human being, but nonetheless a human being. I am not a piece of inspiration porn or a tool to help men feel like a hero. I already know how valuable, precious, and fragile life is, I don't need a man to teach me any of that. Everyday I am determined to make the most of whatever time I get here and live ruthlessly, I don't need a man to motivate me. I already know how to raise hell and scream louder all by myself. My (lack of) health is a part of me and isn't "fixable," especially not by a teenage boy. I am the hero of my own story, not a man. And if I do "get saved," it'll be by myself not because of some want-to-be Prince Charming. 

I'm not saying all men have Savior Syndrome, I'm just saying media pushes these harmful ideas and when men do have it, its very problematic. I don't believe that every guy that wants to date a sick chick is only trying to save her, I just recognize it is an all too common thread. I'm not a "man-hater" either. However, I do hate Savior Syndrome and the archaic, sexist ideals it reinforces. 

Sick Chicks Sisters: I implore you to speak out against Savior Syndrome, get busy living on your own terms, and grab a sword because you do not need a knight or prince. You are all empowered, boss ass bitches who don't need to be saved, no matter what Disney says. 

Xo,

Sick Chick 

 

 

 

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To Rep. Brooks - From a Girl Who is Trying, yet Still Stuck Kind of Dying

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To Rep. Brooks - From a Girl Who is Trying, yet Still Stuck Kind of Dying

Dear Representative Brooks,

Speaking on the American Health Care Act/Trumpcare you said, “It will allow insurance companies to require people who have higher health care costs to contribute more to the insurance pool that helps offset all these costs, thereby reducing the cost to those people who lead good lives, they’re healthy, they’ve done the things to keep their bodies healthy. And right now, those are the people who have done things the right way that are seeing their costs skyrocket." 

When I first read this comment I thought it was something from the popular satirical news source The Onion because it just couldn't be real. But no, this was just another in a series of ignorant remarks on healthcare made by a white, healthy, able-bodied man in Congress. 

I try to be respectful of everyone's opinions, but your comments made me so nauseated it's absolutely impossible to.

My world changed dramatically about eight years ago when I had a back injury that served as a trigger event for underlying, preexisting genetic diseases my family and I were unaware about. Before that incident I was "normal" - whatever that means - I did "things to keep [my] body healthy." But that didn't prevent genetics from taking over. 

My illness has caused me face death many times. I have been told I would never walk again, never read again let alone write, never be able to go to college, never be able to live independently, and more. But here I am, alive and having recently celebrated my eighteenth birthday, a huge milestone that once seemed unreachable. I have had to relearn how to walk six times, but today am walking without assistance. Through intensive speech therapy I am reading and writing again. Next fall I will be going across the country to George Washington University for college with a merit scholarship. 

 

All of these huge accomplishments only happened because I fought my ass off, raised hell, and wouldn't take no for an answer. So tell me again how I'm not doing things right and I'm not trying hard enough to be healthy? 

Even today my life is still in a fragile position of pseudo-stability. But, like many patients, I refuse to be complacent in my future.  

When disease comes into your life, especially rare and undiagnosed disease like I am dealing with, there is no rule book. You quickly learn there is no such thing as "right" or "wrong", there's only survival and you do whatever you have to do to achieve that. 

Have you ever even set foot on the National Institute of Health's (NIH) campus? Have you been to The Children's INN? Have you seen the looks of despair on families' faces and the equally as powerful looks of hope because they know this is the only option left to save themselves or their children? Have you ever looked into a patient's eyes and seen the intense determination to never give up? Have you ever had a loved one so sick they feared for their life? Have you ever been so sick that you feared for your life? No, because if you had experienced any of the above questions you wouldn't be wanting to cut funding from the NIH and you sure as hell wouldn't be saying things like, "They're just not trying hard enough to be healthy." 

The House vote on AHCA is tomorrow morning. I don't expect you to suddenly change your opinions. I am not a constituent, why would you listen to me? But, one in ten people have a rare disease, which makes you think how common are common diseases? Think about how many thousands of your constituents you will impact negatively by voting "yes" on this legislation.

For all of the other Representatives contemplating a "yes" vote, this message holds true for you too. 

You've pissed off the wrong crowd, Representative Brooks. Let me tell you, there's no group of stronger fighters than sick patients and our families. As my story shows, when we put our minds to something, we can make even the impossible happen. 

Sincerely,

Shira Strongin // Sick Chicks, Founder

 

 

 

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Mine, Not Yours

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Mine, Not Yours

Society taught me from an early age that my body is for the consumption of others. That my body had to meet standards someone else set (never what I wanted). That being a woman meant waiting for Prince Charming to come save me and fix everything (they didn't tell me the prince would be a villain in disguise...)

Growing up in and out of hospitals teaches you that your body is just an object; another number for research, another body part - never a whole person, another test result, etc. It dehumanizes you.

Being sick makes it hard to love your body/be body positive. In my case, it is the very thing trying to kill me after all (but hey, the only thing strong enough to take me down is myself.) Because of this, I have never felt worthy of the standards set for women and in truth, I never will be, but that's okay. Hell, it's more than okay. Those standards are complete BS anyway.

Photograph by Moxie Glam ft. fusion scar 

Photograph by Moxie Glam ft. fusion scar 

I am proud of each scar and the stories of survival behind them. I am proud of my curves because I fought to have them. I love my ghostly-white skin because it is beautiful, not sickly. I am proud of my brain because, despite being damaged, it is still sharper than many others' and has worked hard to be that way. I am proud of my voice and its ability to continually scream louder despite protests from my lungs.

NIH Medical Photography, underwear from The Outrage

NIH Medical Photography, underwear from The Outrage

I am reclaiming my body. It is mine, not yours...and it never will be again.

Happy International Women's Day.

Xoxo,

Sick Chick

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Thoughts on Fire

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Thoughts on Fire

Amelia will always be my hardest goodbye.

The moment I met her my life was forever changed. I don't know if I believe in fate, but there's no other explanation. Words cannot express how special of a person she still is. I don't think people are inherently bad or good, but to this day she makes me question that belief because of her pure goodness that radiated throughout her.  A fire blazed so brightly in her soul those lucky enough to get close weren't burned, but ignited.

On paper her life was a tragedy, but in reality it was beautiful. Her unshakeable faith shone in even the darkest hours. She wore strength like the perfect shade of red lipstick.

Sunsets, bucket lists, my first ever snowy Christmas, and chipotle chips - that's how I'll always remember Milly. She might be gone physically, but her message lives on. She poured gasoline on the flickering embers in my own soul, which have now grown into an unstoppable wildfire.

Fearing death is pointless, what we should really be terrified of is not living life to the fullest. Amelia taught me it's not about how much time you get, but what you do with the time you're given. So make mistakes, sing and dance in the rain, celebrate the small things, laugh loudly, don't wonder what could've been, be present in each precious moment, take risks, make a lasting positive impact on this world, commit random acts of kindness, cry and embrace the tears running down your face...just whatever you do - ruthlessly live.

We all only have so much time and it shouldn't be wasted putting out fires. Instead we should all follow Amelia’s lead and start them.

Xoxo,

Sick Chick

Love you to the moon and back, big sis, over and over. 

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The Genetic Lottery

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The Genetic Lottery

The chance of winning the state lottery is one in a million. Well, I didn't win that unfortunately, but I seem to have won the genetic lottery. 

In exactly one week it is rare disease day and I will be celebrating with the National Institute of Health (NIH).

I have a currently undiagnosed neurovascular condition that has been getting extremely worse over the past year. It was the reason for my brain surgery, it is the reason I've been on two blood thinners for approximately a year now, the reason I had to stop driving, the reason I could not take standardized testing for college, and the reason I can no longer do many of the things I love. Even reading, writing, and speaking - my passions - have been stolen at varying levels.  

In my search for an answer I participated in an NIH research study. Based off of two vials of (incorrectly completed) blood work and no other knowledge about my case, the NIH fit me in two weeks after seeing the results. For those unfamiliar with the NIH, it can take months to even get on their waiting list, let alone to be seen. But I'm an odds breaker (yet again), so I might not get into college, but I got into the NIH without even applying.  

I am equally excited and nervous. I'm trying not to get my hopes up because I know the crash will be devastating, but it's hard not to. The only appropriate way to handle this is by laughing at life on a park bench. Oh, and eating cookie dough. Lots of cookie dough. This has been a rollercoaster of a year and it feels like there is finally some overdue upward movement. I'm cautiously optimistic.

I plan to document my NIH stay through my blog here when possible and through social media. Be sure to follow my Instagram/ Personal Twitter @shirastrongin and my new Sick Chicks dedicated Snapchat @sickchicksshira to stay updated. 

Sometimes life hands you lemons, other times life hands you lottery tickets. My life has been full of lottery tickets, this is just the next one, so bring it on. 

One in a million, yup, that's me. 

Xoxo,

Sick Chick 

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Affordable Care Act

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Affordable Care Act

To start off, this post is nonpartisan as health care is a nonpartisan issue despite government making it partisan. I recognize that the Affordable Care Act (also known as Obamacare) is not perfect legislation, there is no such thing, but it is the best option for many right now especially with no replacement plan after the repeal. My passions in ACA are the women's health care rights, along with being able to stay on a parent's insurance until age 18, and being allowed insurance despite pre-existing conditions. There are a lot more reasons Obamacare is important and good, but these will be what I focus on this post. 

This summer, the night before the Common App came out I ended up the ER after a stroke (a sign, I know). This was not my first neurovascular event, and it wasn't my last either. I'm seventeen and my  eighteenth birthday is in just a couple of months. If the ACA is repealed I will be kicked off of my parent's insurance and I will not be able to get new insurance on my own (let alone affordable insurance) because of my preexisting condition(s). Many people have said, "Don't worry! They are planning on keeping those things in the replacement, you'll still have insurance!" Here's the problem: it can be repealed without a ready/available replacement, so until there is a replacement myself and many, many others will be stuck in limbo. Also, we haven't seen any replacement yet, how can we be sure those things will stay? Deals change all of the time and promises are broken in politics. Until we see this in writing in replacement legislation, we can't feel safe/comfortable.

Access to health care is a human right and this impacts everyone. As I always say, health is not guaranteed, so throw your stones at Obamacare, but if your child (or yourself) was sick, you'd want these key pieces to be in effect. 

I know that it seems daunting, but you can help.

I worked with Ellie Wheeler, Founder of the Superhero Project (which you can find under the "Our Community" page) to create a video sharing the importance of getting involved along with ideas on how to. You can see the video here and you can see the document with a script outline for calls/emails and some guidelines here.

There is power in your story, you can choose to help people with it. No matter your age, please use your voice and fight back however you are able to. 

Xoxo,

Sick Chick 

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Of Merriness and Memories

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Of Merriness and Memories

There is something completely magical about the holidays. No matter what you celebrate; Hanukkah, Christmas, Hallmark Christmas, or Kwanza there's no denying that something in the air is different. Maybe it is the pretty lights (which I firmly believe should be left up year round), maybe it is the crispness in the air (even here in supposedly sunny SoCal), or maybe it is the unique cinnamon and pine smell of this time of year. 

Holiday magic can be found anywhere, even in the most unlikely of places, such as a hospital. The Hanukkah/Christmas/New Year's I spent in the hospital back in the Pittsburgh six years ago is still regarded as the best holiday ever. I was across the country and away from family, but in the fellow patients and nurses, I found a second family.  

My roommate and I decorated the dimly lit, cramped hospital room to make it feel more cozy and bring cheeriness. It was snowing outside, so a key part of our decorating was cozy blankets and stuffed animals. I remember that Christmas morning like it was yesterday. It was snowing outside and there were twinkly lights shining from the building across our window. We were woken up early by Child Life bringing boxes over flowing with donated gifts. Being the token Jew in the hospital I had no expectations to be included in the Christmas festivities, but everyone made me feel so loved and welcomed. Seeing that box of completely personalized presents (even thinking about it now) made me tear up. The pure thoughtfulness and generosity was overwhelming. After sitting in shock for a while, my roommate and I dove in to the boxes alternating opening presents. Later we went out and joined in the festivities with the rest of the patients. 

Being in a hospital over the holidays would seem depressing, but the scene I was greeted by stepping out into the main hall was anything but. Patients at this hospital came from all different backgrounds, I remember one four year old who had come from all of the way from Qatar for treatment, but the uniqueness of our situations and the holiday spirit was unifying. I remember one sixteen or seventeen year old boy who had been in a horrible car accident and was now severely impacted both physically and cognitively. He did not speak, and could not, but was the happiest person I have ever known with an infectious smile. Christmas morning he got a nerf gun as a present. He used his hands (with help from fellow patients, such as myself, and nurses) for the first time in months to get into a nerf gun war with the physical therapists. He laughed so hard that morning and it was the first time he had done so, he even managed small, but clear "yes's" and "no's". If that is not a Christmas Miracle, I don't know what is. 

We spent New Year's Eve crowded on my very ill roommate's bed. When the ball dropped we cheered so loudly I wouldn't be surprised if the neighborhood surrounding the hospital heard us. For the first time, I understood the importance of ringing in the new year. It is a reminder of hope, possibility, and time marching on despite leaving soldiers behind.  

I found a sister in my roommate and this will be my first holiday since losing her.  "Some people have such a strong spirit inside of them that they give you the fire you need to keep pushing in times when you think you can't move an inch," she wrote in a blog post about the holiday we spent together. Well, Milly, you are one of those people. I am forever grateful for the lessons you have taught me, the memories we share, and most of all, for the fire you ignited in me. I love you to the moon and back, over and over. 

My hope is for everyone to experience pure holiday magic, like I did in that hospital, at least once. Maybe this will be the year for you?

Xoxo,

Sick Chick

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There's An Ass for Every Seat

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There's An Ass for Every Seat

My dad always tells the story of going to a car dealership where there was this incredibly ugly green car and he asked the salesman, "Who buys this?!" The salesman responded, "There's an ass for every seat." As I'm sure you can guess, my father finds this quite quotable, especially during the college application process. 

Just like there's an ass for every seat, there's a college for every person.  

Some food for thought:

When you're a disabled or health challenged student there is so much more to consider than just the school itself. It has to be near quality medical care, and if you have a rare disease that limits your choices even more because a "good" hospital might not be a "good" hospital for you. The weather has to be suitable for your health conditions. Just because a campus is "accessible" doesn't actually mean it is accessible. Do you have to walk 20 minutes across campus with hills to get to class with no option of a shuttle? Not 100% accessible. Disabled students have to consider the strength of the Disability Services Office. Chronically Ill students have to search for schools that offer pro-rated tuition because it can longer to graduate, which adds expenses (check post #FeministAmbassador for opportunity to get involved in creating a Sick Chicks Scholarship Fund). Students who were unable to take standardized testing due to health challenges are even more limited by testing policy. 

This is only talking about disabled and chronically ill students, not even getting into all of the other various situations complicating college decisions. 

The whole application process is anxiety inducing enough without fearing what people's reactions to potential colleges will be. 

For any sick chicks who are going through the application process or are currently in college, I invite you to submit to the Spotlight program to share your experience and any tips. 

Xoxo,

Sick Chick 

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#CuresNow: WE DID IT

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#CuresNow: WE DID IT

We did it. We did it. We actually freaking did it. 

I'm still crying as I process what this means. A once uncertain future is starting look brighter and I cannot express my gratitude. I am so fortunate to have been directly involved with history, but I did not do this alone. 

Emily, the satellite to my stars, the fire to my flood, the other half of the dynamic duo...where do I begin? Thank you for going on "get-busy-living" adventures with me. Thank you for fangirl-ing with me over Congress. Thank you for starting rallies and breaking ceilings with me. Thank you for crying with me in a hotel room when a reminder of what we are fighting for hit too close to home. I'm not a miracle, and you're not a saint, but we've proved we are more than soldiers on a road to nowhere.

Stephanie, how did I get so lucky to have a role model/friend/fellow advocate like you in my life? Thank you for pushing me and helping me realize all of my potential. Thank you for steering me in the right direction. Thank you for providing laughs when necessary and doses of reality as well. I cannot wait to celebrate in DC (waffles will be necessary). 

Senator Feinstein and Senator Boxer, I am privileged to live in a state where both of my Senators are such strong women who voted YES on Cures. It means the world to a constituent to know her legislators are backing her in the fight. 

The House Committee of Energy and Commerce Team, thank you for your support throughout this process and sparking the conversation. Being able to work with the Communications team was an experience like no other and I look forward to continuing this work in the future. 

My friends, thank you for putting up with my endless craziness and ramblings about staffers, sub-sections, committees, and rallies. Thank you for supporting me through this all and fighting right beside me. 

My parents...this past year has been really rough. Currently, we are facing some new challenges and new uncertainty, but 21st Century Cures gives hope that nothing else could. I couldn't be prouder to work on this for you. Thank you for driving me all around for meetings and flying with me to DC. Thank you for putting up with me over the past couple of years. Thank you for celebrating with me and truly realizing weight of this victory. 

Amelia, I wish you were here right now to share in this. You reignited my fight and I am holding you closer than ever today. I love you to the moon and back forever, sister. We have hope.

The fight is nowhere near over. Next year, we will get OPEN ACT passed mark my words. Right now though, I am going to celebrate the endless possibilities of a once cloudy future.

Thank you for giving us the Century, we won't let you down. 

Xoxo,

Sick Chick

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Dear Sen. Warren,

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Dear Sen. Warren,

Dear Sen. Warren,

When you killed Orphan Product Extensions Now Accelerating Cures and Treatments Act (OPEN ACT) you effectively killed me. I know that writing this will not bring back OPEN ACT, but I also know that I cannot sit idly by when my future is at stake.

At age 17, I am living on borrowed time because of rare disease. I have become a strong advocate for health policy, knowing it is the only way to ensure a future, but your strong opposition to Cures Now feels like the trigger going off in an already loaded gun. 95% of rare diseases do not have treatments, so patients  rely on off label medications.  As I am sure you are familiar with, OPEN ACT intended to take medication already approved by the FDA and prove these safe and effective for rare disease patients. Yes, increased research for rare disease patients is necessary, but the patient populations are so small, there is little to no incentive for drug development and research. What we need are treatments that have already gone through the approval process to be repurposed.

Personally, I have to take over twenty medications a day, none of which are used for their approved purpose. I am fortunate because my family can afford it, but insurance will not cover a majority of these medications and I will be put in a position of choosing to pay for college or life saving/changing medication. Again, I am in the privileged few, but there are many families who have the choice between putting food on the table and paying for these necessary medications.

Without the ability to use off label medication I would not be alive. There will come a time in the future where a doctor will refuse to prescribe a life saving medication because it is off label, or I will not be able to afford it. You claim to not be bought off, to be a woman for the people, but this decision does not seem to be for the people - it seems to be for bio-pharma.

I am thankful that the 21st Century Cures package, which I have been advocating passionately for, for over a year, looks like it will be passed despite your opposition. There are still many important sections/sub-sections, but OPEN ACT was vital to my, along with many others’, future.

I know that because I am not a constituent you will most likely disregard this. You have already taken so much from me, I will not allow you to take away my voice or my hope.

Be ready for a fight with 21st Century Cures because rare and common disease advocates aren't backing down. I urge you to join us instead of going against us.

Sincerely,

Shira Strongin

Founder of Sick Chicks, Patient Activist

www.thesickchicks.com

 

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Day of Thanks?

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Day of Thanks?

This has been one hell of a year.

I look back to last Thanksgiving where I was unable to travel to spend the holiday with relatives because of my first deep vein thrombosis (DVT). Now, I am just grateful it looks like I will not be celebrating in the hospital again.

That initial DVT started me on a journey I never foresaw - filled with tears, endless frustration, too many close calls with my old friend Death, hope, cross-country travel, two major surgeries within the span of one month, and lots of laughter. Because if you can't find the humor in having a stroke the night before The Common App comes out, what can you find the humor in? I mean, different strokes for different folks (yes, I am planning on turning that into an awareness campaign). 

Given all of that, I still regard this as one of my best years and that is what I am thankful for. I am thankful for the once in a generation opportunity to secure my future through 21st Century Cures Legislation. I am thankful for my incredible doctors who are working too hard saving my life for it to all be in vein (get it? get it?). I am thankful for organizations such as EveryLife, Dysautonomia International, and Global Genes who I am privileged to work with and fight beside everyday for a better future, let alone call a family. I am thankful to have these opportunities to speak and write about topics I am so passionate about, such as youth advocacy, health policy, and women's empowerment.

I am thankful to have such special people in my life. There is no single word that can truly describe my friends - who are my Ohana, or chosen family - but I will try in the most concise manner possible. They are courageous, loyal, fighters who are shaping change and succeeding despite the challenges life has thrown at them (whether this be health related or not). 

Amelia - There is too much to say to you, but most importantly...thank you for teaching me what has become my motto this year; it is not about how much time we get, but what we do with the time we are given. It is because of this lesson that I am truly able to look back at this year as one of the best. No matter what happened this past year or what will happen in the future, I know that the work I am doing is influencing positive change in this world. I know that I am making the most of my time, short or long. 

My Parents - I could write an entire post simply thanking you two, but instead I'll keep it brief. Thank you for the misadventures this past year, here's to many more. Thank you for going to the ends of the earth and beyond. Thank you for JMSing and JFSing me. 

Yes, life can really freaking suck, but know what? I am alive and thriving beyond what I ever imagined despite all of the intense struggles. I am thankful every single day for that. I don't need a holiday to remind me. I am reminded when I see a cotton candy sunset, when I look up at the glimmering stars, and when I hear waves crashing onto the shore. 

Everyday should be a Thanksgiving...but maybe without all of the other obligations. That's a separate post though. 

Xoxo,

Sick Chick 

 

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America the Beautiful

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America the Beautiful

America the beautiful. America the brave. 

America...what the hell have you done? 

You've shortened my already limited lifespan. You've shaken my LGBTQ friends to the core. You've taken me back to the night I was sobbing on the corner of my bathroom floor because I lost a friend to gun violence and another because of lack of accessible healthcare. 

Best of all, you've made it seem okay to forcibly take women against their will. 

Come 2017 we will have a president who mocked a disabled reporter on national TV. Come 2017 we will have a president who wants to make gun laws even looser than they are already. Come 2017 we will have a president who promotes grabbing women by the pu$$y. 

I cannot stand by and watch this happen. I keep waiting for someone to come out and yell, "Gotcha!" But, this is our future. 

Please someone justify any of this to me: A young, disabled, woman who knows what it's like to have choice taken from me. 

So, please someone explain this to me. Because I'm completely lost. 

I will continue fighting and keeping my promises to those we have lost for a better future. A future where being a white, wealthy, man doesn't allow you to get away with rape, homophobia, sexism, ableism, and racism. 

Empowered women, empower women and now we have to stick together more than ever. 

Xoxo,

A Nasty Woman 

 

 

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#FeministAmbassador

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#FeministAmbassador

If you know me, you know my obsession with Feminist Apparel. They're shirts and socks are staple pieces in my hospital wardrobe providing comic relief and remind doctors that "Femme Ain't Frail". Well, now I have the exciting opportunity to partner with Feminist Apparel as a Feminist Ambassador!

For a long time I've wanted to start a Sick Chicks Scholarship Fund. I've realized through my own college application process that there are very few college scholarships available for students with illnesses and disabilities - especially rare diagnoses - and most of us can't get any merit or sports scholarships since we didn't go to traditional school or physically can't participate in sports. College is also extremely expensive if you aren't able to get a scholarship of some kind, and with medical bills the cost of tuition just isn't feasible for many families. You might be asking, "Well, then why not get financial aid?" This is where things get complicated. On paper, many of us don't need financial assistance, but there are so many other factors. These illnesses aren't acute and we'll be paying medical bills our entire life, we can't afford to take on that type of student debt on top of it. Many of us take off-label medication, we can't function/wouldn't be alive without it, but insurance doesn't cover those meds. (...Which is why we need OPEN ACT, sorry I had to.) Also, many chronically ill students take longer to graduate because we are unable to take the full course load required, which adds to expenses.  It is a really horrible feeling knowing that paying for (overpriced...but that's a separate fight) life saving treatments, might be the reason that you can't pay for college or other things to allow you to participate in life. 

So, I want to help. Hopefully by the end of this year we will have the first application for a Sick Chicks Scholarship! Women's education is extremely important and finances due to health circumstances should not be a barrier to education. Go to www.feministapparel.com  and use the promo code 'SHIRA10' for 10% off and $3 of each purchase will go to helping start this Scholarship! This code is reusable, so don't worry Sick Chicks has got you covered for all of your gift giving needs coming up for Fall and Winter. Every dollar counts, please, please share! 

Xoxo,

Sick Chick

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No Cinderella

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No Cinderella

I've been on a Disney Throwback kick lately, can you blame me for the nostalgia? Buzzfeed's article seriously got it right when they said the 90's are coming back and just repeating them-self. Anyway, I found my favorite old Disney song, "Cinderella" by The Cheetah Girls. It is a standout feminist anthem in a sea of "someday my prince will come"s whining about life only beginning when the handsome man comes to rescue the girl who can't survive by herself. 

Don't see this as an anti-Disney rant, because trust me, I love Disney as much as the next person. I can quote any classic Disney movie to you and I'll happily break out in High School Musical any time, any where - you can Bet On It. But, my parents raised me in a feminist household where I wasn't allowed to watch the Disney Princess movies as a child because of their anti-feminist, body shaming, etc. messages. (And we wonder why I'm the activist freak I am today?) 

I am a strong, independent woman. I will not be like Cinderella. My "dark, cold, dusty cellar" is my health, hospitals, and even my own room that holds me prisoner at times because of being too sick to leave. But, I'm not waiting around for a "prince to come and set me free". I know that the only person who can save me is, me. So, when the question of why I handle my health in the way I do (with jokes, smiles, writing, and advocating) is asked, well,  it's because I refuse to be the woman who ends up like Ariel/The Little Mermaid with her voice taken away. I have a voice, a powerful one, and I want to use it for the better. The fairy tale life isn't for me, that much is pretty clear. To quote one of my absolute favorite Disney princesses though, "I'm a damsel. I'm in distress. I can handle this." This has always been much more of my motto. My Sick Chicks Sisters help me handle it. Advocating for health policy helps me handle it. Writing helps me handle it. Listening to music, swing dancing, watching Netflix and so much more help me handle it.

Wanting a prince by no means makes you weak. In fact, all relationships are extremely important and I'm currently asking for people to submit Spotlights specifically on this topic (so if you're interested in that - please email your submissions through the "Let's Talk" page). However, there is a problem with the idea that women can't be the heroes of our own stories. My challenge for you is: instead of waiting for a prince to save and love you, try saving and loving yourself. 

Xoxo, 

Sick Chick (aka, She-Rah; the warrior princess) 

 

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The Fight For Cures Now

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The Fight For Cures Now

"Congress is working together on a nonpartisan issue that will have a profound effect on the lives of all Americans. H.R. 6, the 21st Century Cures Act, will bring our health care innovation infrastructure into the 21st Century, delivering hope for patients and loved ones and providing necessary resources to researchers to continue their efforts to uncover the next generation of cures and treatments." - Mission Statement, House Committee of Energy Commerce, 21st Century Cures

Is it just me or do you get chills reading that paragraph? 

Finding advocacy allowed me take control of an uncontrollable situation (my health.) Now, one of the pieces of legislation I'm most passionate about and have fought the hardest for is facing it's day in the Senate. 

~ What do we want? Cures! When do we want them? Right. Freaking. Now. ~ 

We are in crunch time. 21st Century Cures has passed the House, and is now finally going to the Senate after being delayed quite a few times. August is our final time to push for this important piece of legislation. You might be asking things like, "Well, I'm not sick, so why does this affect me?" or, "I don't have a rare disease, so why do I care?" I'm here to answer those questions. 

Health legislation affects everyone. Yes, you might not be sick. Today. But health can change in the matter of seconds, and (God forbid) it ever happens to you, you'll be hoping that 21st Century Cures in action to produce treatments and cures. Cures are for everyone NOT just rare disease patients. This affects cancer patients, this even affects the hot topic zika virus. But, OPEN Act (something I'm incredibly passionate about that gives bio pharmaceutical companies incentive to make off label medication on label for rare diseases that otherwise wouldn't have treatments) is only for rare disease patients. So then comes the question again, "Why should I care?" Because, 1 in 10 people have a rare disease. By that statistic everyone knows someone with a rare disease. So, get involved and care for your bother, your mom, your niece - whoever it may be because without these vital pieces of legislation they might me in the same situation as me...stuck living on borrowed time and who knows how long that lasts for? 

Ways To Get Involved:

1. Change your profile picture on Facebook and Twitter using this link to share your support for Cures Now 

2. Use the hashtags "#CuresNow" and "#OPENAct" on social media to spread the word and to get the attention of your local legislators, don't be afraid to tag them in posts about the upcoming legislation!

3. Use these hashtags and share why YOU need #CuresNow (for ex. "I need #CuresNow and #OPENAct because paying for life saving medications or college shouldn't even be a choice") 

4. Write to your local legislators! As constituents, you hold great influence. Please take advantage of this and share your story! Follow this link

5. Submit a Spotlight story! I'll be publishing stories throughout the month of August and into early September in the Spotlight program specifically relating to the need for Cures Now. Share how you're fighting for Cures Now, how off label medication saved your life/the impact the legislation would have if in place, and/or why you need Cures Now!

~ We have the power to impact great change. Right now we just have take the moment and turn it into a movement with lasting momentum. 

Help us win the century, and just wait and see we do with it. I promise you won't be disappointed. ~

Xoxo,

Sick Chicks 

Facebook.com/thesickchicks

Instagram @shirastrongin 

Twitter @sick_chicks 

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What A Long Strange Trip

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What A Long Strange Trip

Happy Birthday to Sick Chicks! It has officially been one year since the website went live and our incredible success wouldn't be possible without all of the support we've received along the way. Originally "Sick Chick" was a pen name for my anonymous personal blog (I have since "come out of the disability closet" and stopped being anonymous, but will forever be "Sick Chick"), but I quickly realized through being picked up by an east coast based non-profit, having interview opportunities, and being asked to speak at national conferences that "Sick Chick" could be so much more. While it took years, thank you all for helping to make my dreams a reality. I firmly believe that empowered women empower women and that's what I sick chicks do - we come together and empower each other through really tough times, whether that means being a shoulder to cry on or making inappropriate jokes, we're there for each other through the good, the bad, and the ugly. 

This year has been filled with ups and downs, it started off with me being named the Global Genes 2015 RARE Champion of Hope - Teen Advocate, which was such an immense honor and fueled my passion even more for activism. I made many friends at the Summit and look forward to attending this year with my We Are More Family. I've been pushing for specific legislation (OPEN Act and 21st Century Cures) for a while and this year I've gotten to see a great deal of progress being made on those bills. I even got to speak at a break out session during a Rare Disease Legislative Advocacy conference where we lobbied in DC for these to bills.

Sick Chicks has grown beyond my wildest dreams. I've had a Forbes article written about me, I've had my work published, done podcasts, and there is still so much more to come. We've been involved with and partnered with so many organizations led by strong, inspiring women; Made by Mer, InvisiYouth, Debra of America, The Literal Heart, The Superhero Project, Emily's Fight, Hannah's Heartbeat, Dysautonomia Intl., Global Genes, and many more. We've been able to host fun events for local California girls and are finding ways to have Sick Chicks sponsored events all over since we are International! 

But, unfortunately, nothing is ever completely positive. This year was very rough health wise. I spent most of the year in and out of the hospital and had two major surgeries (I broke my mom's rule of one major surgery every two years...oops.) I had multiple Transient Ischemic Attacks (TIAs) or mini strokes, and now am dealing with many cognitive impairments that severely impact my reading/writing - as a result. I've been told I'll never be able to read or write at the level I was at before. But, all I know is with my sick chicks at my side, anything is possible. I'm not going down without a fight, and I'm not just going to just accept this. 

Thank you all for sticking by me, supporting Sick Chicks and our advocacy efforts. I can't tell you how much it means. 

We might not have found Wally this year, but there's always next year, right?

Xoxo,

Sick Chick

 

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Christina Grimmie: We Say Goodbye "With Love"

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Christina Grimmie: We Say Goodbye "With Love"

By Emily Muller & Shira Strongin:

On Friday, June 10th, Christina Grimmie, age 22, was fatally shot after a concert in Orlando where she was doing a meet-and-greet with fans.  Christina was a talented and successful vocal artist, who placed third on the popular television show The Voice, and toured with artists such as, Selena Gomez and Rachel Platten.  She was a supporter of the rare disease community, and performed at the 2015 Global Genes Tribute to Champions of Hope last year.  

When The Mighty reached out to us after hearing of Christina’s passing to write a tribute article, we jumped at the opportunity to be able to honor a person so special to not only us, but the entire rare community. Putting together this article reminded us of just how many people's lives she touched with her generosity, compassion, and spirit. She had a tremendous impact on us both personally, she will never be forgotten. Christina will live on in our hearts, and through memories we hold close.  

Christina Grimmie at the 2015 GLobal Genes Tribute to Champions of Hope 

Christina Grimmie at the 2015 GLobal Genes Tribute to Champions of Hope 

I first met Christina at the 2015 Global Genes Tribute to Champions of Hope. I was being honored as the 2015 RARE Champion of Hope - Teen Advocate. I was so nervous, yet excited, and had absolutely no idea what to expect. I began to walk down the blue carpet with cameras flashing in my face and people pulling at me for interviews. I clung to my fellow honoree and friend, Madi Vanstone. I'm sure I looked like a lost puppy or a fish out of water. That's when I turned and saw Christina walking down the blue carpet, confidently just doing her thing - posing, working the interviews, totally calm, and in control. After both of us were finished she came over to me and asked if this was my first time "doing a carpet," I nodded anxiously. She told me not to worry about it, that "it [would] probably get easier every time' (she didn't want to over promise.) We then had a nice little chit chat about hair dye and I felt better about everything. This was the moment I knew we would become friends. 

That's just the kind of person Christina was (it's heartbreaking to go from saying "is" to "was" about a person so lively and spirited) if she saw someone in need of help, she was the first one there. Whether small, like a freak out over a first time "doing a carpet," or something big like coming to the Global Genes Denim Dash just to be supportive of the cause, and not even for any publicity. I'm lucky I was able to have called Christina a friend and to have known her and her family for even the short time I did. She had unshakeable faith, was so humble, witty, and big-hearted. She will most certainly be missed. 

Shira Strongin, Founder/Activist - Sick Chicks, Chair - We Are More

Savannah, Christina, and Shira at the 2nd Annual Global Genes Denim Dash

Savannah, Christina, and Shira at the 2nd Annual Global Genes Denim Dash

 

I never had the pleasure of meeting Christina, but I can tell you that in the rare disease community she was known for her kindness just as much as she was known for her incredible talent.  Recently, I watched a video of Christina performing at the 2015 Tribute to Champions of Hope in which she noted that when she looked around she saw “amazing people that work so hard and keep pushing on to create awareness.”  Through her devotion to the rare community, she truly became one of those people.  Christina was one of the first supporters of a project that I’m working on called “We Are More,” an initiative hoping to change the way young adults with illness and disability are seen by society. She really wanted young people with illness and disability to continue to have ambitions, dreams, and hopes for the future.  The fact that she had so much faith in our mission to empower young people and encourage them to dream makes it all the more tragic that someone robbed her future hopes and dreams of her.  Although Christina’s life was ended by a senseless act of violence, the impact that she made on the rare disease community will never fade.  I know that I’ll always be thankful that she believed in us.  

Emily Muller,  Founder/Activist - Emily's Fight, Lead Communications - We Are More

In the wake of this senseless act of violence, we gathered friends from the rare disease community to share either a story, a quote, or a memory - something that truly captured who she was.  These statements come from patients, entertainers, and advocates alike. We were both lucky enough to have been personally impacted by Christina, whether it be through her being one of the first to believe in and support a cherished initiative, or through a special friendship.  We hope that you can find some joy and solace in these recollections.  We know we did.

"[Christina] was a wonderful, beautiful person inside and out, both on stage and off. She was an incredible inspiration for the rare disease community in her too short life. She was an emblem of youth advocacy. And in that aspect, we were one and the same."

Ben Lou, Member at Large - We Are More, "[Christina's] Favorite Person" - as said by Christina, September 27th

Christina's Mother, Christina's Father, Ben, and Christina at the 2nd Annual Global Genes Denim Dash

Christina's Mother, Christina's Father, Ben, and Christina at the 2nd Annual Global Genes Denim Dash

“The world knows Christina through her videos and music. I was fortunate to get to know the young woman behind the voice. Christina was goofy, caring and devoted to her faith. At the Global Genes Tribute to Champions of Hope, where she gave an impromptu acapella performance (due to sound issues) , she cooly laughed off the technical difficulty stating ‘the piano was just a stage prop.’ That was Christina, seeing the silver lining to everything. Her sound will be missed, but her legacy of compassion will live on.”

Jesse Marimat, Patient Advocate

Jesse and Christina at the 2015 Global Genes Tribute to Champions of Hope

Jesse and Christina at the 2015 Global Genes Tribute to Champions of Hope

"Christina was the type of person who you could meet and feel like you've been her friend for years," [Travis] explains. "She had a diamond heart and was so giving. I only had the gift of knowing her for less than a year, but her charisma, talent, and enthusiasm for life were inspiring to me far before I had the pleasure of calling her my friend. Her legacy will continue to touch lives forever. She and her family are beloved by so many and my deepest prayers go out to them, as well as all of her friends and fans."

Travis Flores - Writer, Actor Philanthropist (in a statement to Entertainment Tonight)

Above: Christina and Travis at the 2015 Global Genes Tribute to Champions of Hope Below: Travis and Christina at the 2nd Annual Global Genes Denim Dash

Above: Christina and Travis at the 2015 Global Genes Tribute to Champions of Hope

Below: Travis and Christina at the 2nd Annual Global Genes Denim Dash

"I had the honor of performing with Christina at the Global Genes Gala in Huntington Beach last year. Her performance that night is one I will never forget. While she was playing her set, her piano gave out due to technical difficulties. This is an uncomfortable situation to be in while hundreds are watching, but Christina was unfazed. She quickly reacted by grabbing the mic and delivering an a cappella performance that left the crowd in awe and garnered a well deserved standing ovation. Christina was a true professional but more importantly, a true artist. She touched the lives of many through her kindhearted personality and unbelievable raw talent. Her music will live on forever."  

Aleem, Singer/Songwriter 

Christina and Aleem at the 2015 Global Genes Tribute to Champions of Hope 

Christina and Aleem at the 2015 Global Genes Tribute to Champions of Hope 

Tweet 7.JPG

“For years, Christina Grimmie had always been the beautiful voice with the captivating persona that I'd watch YouTube videos of on repeat. It wasn't until last September that I began to see the girl behind the beautiful voice. The girl who spent her free weekends at charity events, who lent her platform to those who had none. I actually met Christina through a charity, Global Genes. She was at their 2015 gala as a guest, friend, and performer. After a great couple of songs, she was ready to sing again when, completely out of nowhere, the audio stopped working. It reminded me of a Michael J. Fox quote, "Things are going great; then you hit a wall and things change. I think it says a lot by how you react to that." And as everyone in the audience was waiting to see how this tiny, beautiful musician would react to no music, she laughs it off and puts everyone at ease, and continues to happily sing a Capella, and MAN can she sing. In the short while that I got to live in her light, I didn't have a worry in the world. By being in the same room as her, I felt safe and comfortable. She was one who saw everyone as an equal, and who showed her faith through her actions. You didn't have to see her post a Bible verse to know she was a woman of faith. You could tell by the love, compassion and acceptance that she welcomed you with. It's my greatest hope that I can honor Christina by living my life as she lived her's: completely, brightly, and confidently, even when the music goes out.

Madison McLaughlin, Actress, Advocate

Christina during her performance at the 2015 Global Genes Tribute to Champions of Hope

Christina during her performance at the 2015 Global Genes Tribute to Champions of Hope

We are heartbroken to hear the news about our friend Christina Grimmie. She was extremely talented with such a kind heart. She used her platform to not only increase positivity in this world, but to help raise awareness and funds for numerous causes. Christina was a selfless rare disease activist and has left a lasting impression with personal friendships she made in the rare community.We will never forget how she silenced a room and moved people to tears with her amazing acapella performance at the Tribute to Champions of Hope last year.  She has left an untouchable legacy and will be greatly missed. Our thoughts are with her family and friends.”

Global Genes, Rare Disease Non-Profit Organization 

Christina supported the entire rare community. If you can, please consider giving back by donating to her family and supporting them through this difficult time. Or, consider signing this petition that would help Christina be remembered in the next Legend of Zelda game, which was her favorite game of all time. 

Rest In Peace. March 12th 1994 - June 10th 2016.

Rest In Peace. March 12th 1994 - June 10th 2016.

 

This post can be viewed on The Mighty.

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Recovery

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Recovery

Recovery: rəˈkəv(ə)rē/ 

noun

  1. A return to a normal state of health, mind, or strength
  2. The action or process of regaining possession or control of something lost or stolen

So, why am I? The girl with the chronic, life long (yes, I know they're essentially synonyms, but I like being dramatic - any of my doctors can tell you that - besides it gets the point across) illness(es) talking about recovery? Well, because I'm actually going through the process now.  

According to the first definition to recover one must return to a "normal state", which once again begs the question - what the hell even is normal? I don't think it exists. I've talked about that so much I feel like you're all sick of it, but this is a serious issue. I mean by this definition, is recovery truly achievable by anyone? Personally, I could never achieve it because I'm far from normal

But, then comes that second definition. There is a saying, "Time, she's a slut, she screws everyone over." And lately I've realized both how true, and grossly false that statement is. I don't usually share personal medical information and I keep things fairly (okay VERY) private, but just so you can understand; I'm living on borrowed time right now, I'm surprising everyone because I'm somehow still here and I'm not supposed to be. It's beautiful, magical, and special. But there are consequences to it also. 

I have learned how to live life in and for the moment, because you never know - that's all you might have. This has led to amazing adventures, like attempting to get into the Church of Scientology, just because. It has also led to a fair amount of really stupid decisions (with wonderful stories, keep in mind!) that I will most definitely not be posting on here because I'm very aware my mother reads this.

Let's be real, everyone dies. It's a reality of life. The question isn't "will we?", but rather "when will we?" So, I find it quite pointless to fear death since it is inevitable. I think the real fear is missing out on life. This is why I started doing "get busy living" activities (like the things I did...and didn't...talk about above). I don't want to have any regrets, I don't want to miss out, and I want to feel accomplished when it is my time to go. It's not about how much time you get, it's about what you do with the time you're given. So, I'm taking back control of my life and my time. I'm recovering. 

Recovery is a long, rough, and horrible process, but it is so rewarding. I have anxiety, and it's taken me a while to even be honest with myself about it. I feel it manifest constantly though now. My vascular system has gone on strike, so if I even feel the slightest chest pain I go to a dark place. The combination of the whole "not supposed to still be here" thing (odds breaker for the win!) and anxiety made me push people away this past year or so. I am working on mending those friendships. I know that will be a long and difficult process, but it's been successful so far. 

I already had a huge wall up (seriously The Great Wall of China would be jealous of the kind of security I arm myself with), but I've realized the wall isn't just to protect myself, it's to protect others too. With any kind of illness or disability I think we have the tendency to want to shield and shelter others from what we view as our "ugly" truth. I think this is even more prevalent in people with life threatening illness. We want to save others from the pain. The funny thing? I never asked anyone if they actually wanted to be shielded. I just assumed and pushed people away without a second thought. But, this isn't giving people the benefit of the doubt. Yes, there will always be people who will hurt and reject you (even in completely platonic ways), but if you block out everyone for this fear, you'll end up isolated and hurting. So, for me, learning how to allow people in is going to be a huge part of my recovery.

I'm currently dealing with severe aphasia and moderate apraxia, and loss of brain function post multiple episodes of Transient Ischemic Attacks (TIA), and I have no clue how much language function I'll ever get back. Writing, reading, speaking - they're my life (just kind of, if you can't tell). So, to people who have emailed or messaged me, I promise I am not ignoring you, and I really do thank you for reaching out. When my brain is functioning enough to read and write, I'm working on Sick Chicks, We Are More, or finishing up my junior year of high school. I mean, I've been writing this post for over a month now and it's gone through so many revisions, but I'm sure there are multiple grammar mistakes and I'm sure there are multiple places where things just don't flow/make sense. But, for now, this is as good as it is going to get and I'm so proud of myself for even being able to accomplish this. 

When we think of recovery it's generally the 12 steps, or recovering post surgery (granted I'm doing a fair bit of that too), but we don't ever talk about the whole recovery process when what was taken from you was your time and life - things you can never really get back. I feel as though I'm stuck in a sort of purgatory. I'm still fighting for my life and I always will be (nature of my illnesses), but I'm no longer dying. A huge part of fighting for my life, is fighting to actually be able to live. Dealing with life and death affects people differently and I can only speak to my experiences, but there isn't a guidebook on "How to Deal: Realizing You've Somehow Made It and What The Hell You're Supposed To Do Now".  I think these are real issues that need to be spoken about candidly. I know I'm not the only one dealing with this. 

Charles Bukowski said, "You have to die a few times before you can really live."

I couldn't agree more. So, l'chaim! 

Xoxo,

Sick Chick

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Remembering ZZ

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Remembering ZZ

In Jewish culture on anniversaries of significant deaths we light a yartzheit candle. Today, my family is lighting one to mark the fourth year of the passing of my grandfather, Allan Granoff (ZZ). 

He was one of the founding doctors at St. Jude Children's Research Hospital in Memphis, TN. At the time the South was still segregated, but ZZ and the other doctors wouldn't sign on unless there would be racial tolerance and equality. So, St. Jude became the first hospital in the South to have only two bathrooms; one for men and one for women, instead of one bathroom for white men and one black men, and one bathroom for white women and one black women. It was also the first hospital that would treat and hire people of all races and religions. Everyone would eat in the cafeteria from the researchers to the janitors, and again, there was no segregation. The doctors who started at St. Jude weren't sure if they would ever make a scientific contribution (they have made huge ones over the years!), but they knew would they would make social contributions. I'm so proud to know my grandpa was a part of that. ZZ even marched with Martin Luther King Jr. during his time in Memphis. 

I'm so thankful to ZZ, I wouldn't be the activist I am today without his influence. He taught me to raise my voice and never stop until I am heard. He taught me to stand up for what I believe in. Most importantly he taught me, "if you've never pissed anyone off, you've obviously never stood for anything." I know he's proud of me, because according to this, I've stood for a lot...

Even when he was having bad dementia he always asked about my health, we would have discussions about changing the world, and sing "I'll Be Seeing You" together while looking out at the beach. 
I'll always cherish that. 
Losing a loved one is never easy, wether recent or four years ago. But, remembering the amazing moments helps and knowing, someday, I'll be seeing you again, ZZ.

I love you. 

Shira

 

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Talk Medical To Me (Part 2)

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Talk Medical To Me (Part 2)

Netflix and Chill - I literally mean watch Netflix and Chill. If I invite you over to "Netflix and Chill", there will be no funny business. There will be lots of Netflix marathons, food binging depending how my stomach is, and if you're lucky we might even take a communal nap.

"Stay Healthy" - I hate hearing this with a passion. Refer back to "Talk Medical To Me (Part 1)" definition "Pretty Ill" - I can fake it with the best of them and 9/10 times I never look how I'm feeling. I have a chronic illness (another definition to refer to), meaning I won't just get better or become healthy. I will be sick for the rest of my life. Yes, there will be better days, and worse days. But, telling me to "stay healthy" is an insult and rubbing my face in something I can never have even though I know that isn't what you mean to do.

"Baby Docs - Residents, fellows, etc. Anyone who is in school to be a doctor; sometimes do not have enough experience yet and often go by the book, which causes ignorant assumptions especially for those with complex diseases" - Maura 

Vagina - Yes, I am referring to female genitalia, but sometimes residents don't feel comfortable using correct anatomical terms and say "girl parts". All parts of my body are girl parts, therefore you have to be specific. I have a hand, I have a foot, and I have a vagina. Let's all say it together - Vagina! Vagina! Vagina! Better?

"Vog Mask - The thing that makes you look like a badass post apocalyptic ninja, all while protecting from the germs of the world!" - Savannah

Privilege - Something you have that you can't control. You can't control you're race. You can't control your health status (to an extent - you can control whether or not you smoke, you can control whether or not you have healthy eating habits, etc.). You can't control your sexuality. Those are all privileges depending which status you are because someone (the privileged) are the majority. You shouldn't be ashamed of your privilege. The point is to acknowledge that privilege is there and influences daily life. A big part of this is being contentious and just "watching your privilege" based on your audience. An example of "watching your privilege" would be not complaining about needing to watch what you eat in front of a tubie. 

Mobility Aids - Wheelchairs, canes, walkers, etc. these are seen as symbols of limitation, but they're called mobility aids for a reason, because they allow those of us who are disabled to be mobile and live an active life. I know this was in the past, and not to drudge it up again, but this is one of the huge reasons the "Kylie Jenner Magazine Cover" controversy was so infuriating for those of us who use or have used mobility aids. She viewed the wheelchair as a symbol of the limitation her fame (which is a privilege?) puts on her, but a wheelchair is freedom. 

Family - I talk about my Sick Chicks family a lot, and it's because you guys (my readers, community, other Sick Chicks) really are family to me. Family isn't defined by blood. Family is who is there for you when you need it the most without question. Family is your biggest support system and your biggest champions. Family just gets it. Family is a connection of souls that when you meet people it's just undeniable, the bond is often as strong, if not stronger than blood. 

"Neurology - Brain/nervous system doctors. The closer they are to the brain, the more egotistical and bitchy." - Savannah

Paramedics - The hot guys on ambulances moms use as a bribe so we'll let them call 911 

"GI Doctors - The ones who are paid to ask about your pooping habits." - Savannah 

Shoot up - To do a medically necessary injection in a sketchy bathroom and feel like a druggie 

"Sterile - Super clean. Cleaner than the house after your mom found about people coming over." - Savannah

LO2 (pronounced low-2) - meaning to be lacking in oxygen (O2), deoxygenated, hypoxic...it's just a bit of a problem. 

 "Allergic Reaction - When your body tells you NO in capital letters. Usally involving a lot of freaked out nurses/parents and a lot of meds." - Savannah  

Morbid Jokes - Things sick chicks say (such as, "I might die young, but at least I'll die smart") in front of non sick people who aren't as accustomed to death and don't find such jokes funny. 

1 in a Million - I know, every parent thinks their child is special and 1 in a Million, but Sick Chicks usually are literally 1 in a Million, and should be treated as such. Because we are a 1 in a Million a good motto is "expect the unexpected", there's not really many people like us whether that's a good thing or a bad thing, we're never really sure. 

Service Dogs - Dogs that are trained for specific tasks i.e.; being a seeing eye dog, helping with mobility, picking items up, opening doors, etc. Can be taken anywhere with owner. Must go through an intense application process to be considered for a service dog. 

Emotional Support Dogs - Dogs that are for people with anxiety, depression, etc. and can be used for comfort. Can be taken most public places with owners. *click link for more information about this*

Therapy Dogs - Dogs that are taken to play with children and adults (mostly children) in hospitals, but don't have the rights of Service and Emotional Support Dogs, so they can't be taken into stores or restaurants with their owner. 

"You're too young to [be this sick, be dealing with all of this, etc.] - Needs to stop being said because bottom line is no age should have to deal with all of this and illness knows no boundaries. It can happen to anyone at any time." - Morgan 

If you want your definition to be added to the next addition either put it in the comments, email me, or message me on any of my social media accounts!

Instagram - @shirastrongin

Twitter - @sick_chicks

Facebook - facebook.com/thesickchicks 

Xoxo,

Sick Chick 

 

 

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