A pop music artist and artivist on a mission

Her tunes are original, catchy and meaningful.

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Image credit, fellow EDS warrior Anna Werrun @annaweds *disclaimer*

Image credit, fellow EDS warrior Anna Werrun @annaweds

*disclaimer*

About me, and my mission

My name is Natalie Marie Rose Guedes, a.k.a Bionic Butterfly, known to friends as "Rosie." I'm a passionate pop music artist and artivist. I am a "Bionic Butterfly" because I am fighting a relentless battle with a rare/complex illness and though I'm fragile, I'm strong spirited and fiercely determined to reach my goals before I can no longer.

I'm also writer and former neurodiversity-focussed activist/advocate as Girl Outside, which is also the title of my book, which is available on kindle or as a gift. The best of Girl Outside work has all been compiled and linked to the bottom of the Social Media page. I'm proud of the work I did under Girl Outside, which was helpful to many, and have kept the best of it up and available, so it may continue being helpful and relatable to people.

As for the music, I'd describe my music as pop with elements of synth, electro, urban/R&B, and rock. It's 80's/90's inspired, but modern too. I've been working on it from home, at my own pace, on Logic 10. I then send it to a very skillful engineer for mixing and mastering. The lyrics are deep and meaningful, but in ways that many can relate. I love music, especially composing and designing pop music, like nothing else. It's my bucket list dream to put out at least one album. 

I’m also a loving mama and wife, a woman on the autistic spectrum, a unique geek, a trauma survivor, an eccentrically creative fashionista - and a rebel with a cause. 

But also, I'm a "spoonie" .. which means my energy and life quality are significantly limited, due to health. I battle the rare/complex conditions Ehlers-Danlos syndrome and dysautonomia.

In spite of this, I'm on a determined quest to live a uniquely purposeful and meaningful life in spite of my challenges. I'm determined to reach for and self-advocate for the type of medical care I, and others like me, need and deserve in order to have a decent quality of life and the best chance at reaching bucket list goals. 

My goals are as follows; Spending quality time with family and close friends, seeing my boys become men, making music that is both catchy and enjoyable as well as capable of helping and inspiring others, and speaking out/sharing my experiences for change in relation to education, awareness and human rights concerning marginalized people such as those in the autistic community, as well as disabled and/or chronically ill patients.

I hope to do my part in helping to prevent future generations from painful, strenuous and damaging experiences which I, and many others for that matter, have had to unnecessarily go through. This advocacy/activism/self-help theme is consistently present in my blogs and videos, and colours much of my music material too - in a way that is not only relatable to many, but may also make you want to dance! 

Background:

From 2011-2016, I was a neurodiversity blogger/youtuber/activist with a focus on autistic spectrum and trauma related social activism themed subject matter, as "Girl Outside." I am happy to have heard that my work was helpful and beneficial to many people, and I am proud to have completed the unique mini-novel Girl Outside, which has very positive reviews. I have kept the best of “Girl Outside” work up for view (see Writing&Activism section at the bottom of Social Media page for links and info.)

When it comes to my health, I'm a zebra warrior. The zebra is the mascot for a very challenging chronic illness, Ehlers-Danlos syndrome, which I have been battling throughout my life, especially in the past few years. EDS is a genetic disorder which causes weakened collagen. Collagen is your body's glue. It's considered rare, though it's not as rare as people think. In addition to EDS, I have developed a very difficult and life limiting condition called dysautonomia, which doctors at the Vanderbilt center have said causes a quality of life comparable to people with COPD, congestive heart failure and dialysis dependant renal failure. However, with the right specialized medical care, dysautonomia is treatable and even curable for some. People with EDS are highly prone to developing dysautonomia.

EDS makes one more fragile and can cause lots of co-morbid complications. Some are more severe than others. My case is considered moderate to severe. EDS and dysautonomia are some of the hardest illnesses in the world to access proper care for, with only a few specializing doctors available to help improve and extend life. This is so in the country I live in too.

Some (including me) are speaking out and advocating about these issues, until things hopefully change. In the mean time though, without reaching this specialized care, many with EDS suffer severe and painful life limits, inadequate care that can be life and safety threatening, and shortened lifespans. I am one of these people, but I hope to improve my quality of life and safety enough to do my bucket list goals.

In spite of the difficulties I'm currently struggling with, I'm trying to do as much as I can with my music and artivism. Though it can be a challenge to carry forward with this, it feels therapeutic and rewarding. Some music artists, models, actors etc.. seek big time fame and material fortunes, but I have more simple wishes; To have some reasonable quality of life in order to be with my family and to experience music, art, nature, travel and joy - and to make a positive impact while I'm here.

(For more info on EDS click *here*)

In addition to the above, I openly identify as being autistic (I have an autism diagnosis.) This hasn't been easy either, as often people do not understand the true nature of what this means, or how it presents in many adults, including me. This has also caused me to have additional difficulty obtaining proper medical care. It's been a tough paradox, a gift and a curse, but being autistic makes me who I am and gives me the outlook I have, on life, on the world, and on art. For the sake of awareness and helping others like myself, I've put a lot of effort into articulating this in my blogs and videos. It hasn't been easy but it's been worth it.

Since 2011, when the original blog "A Girl Outside The Box" kind of sparked a mission, I worked to create envelope-pushing autism (and sometimes health) related content on social media. There was a lot of great, positive, uplifting, inspiring feedback and relating with others, but also some really rough stuff too. So I had to walk away and start a new chapter with a different, more healing energy for me. Now, I've moved forward and onto another chapter, and actually, returning back to the original passion of mine; music.

Much has changed in the past few years since I started this, especially in the past year and a half when it comes to my worsening illness (EDS.) In the fall of 2014 I suffered a major autonomic nervous system crisis episode while on a trip, because my body was pushed too hard when I was already unwell. I was so sick that I was unable to travel home until I was better enough. At that point only was I properly diagnosed with Ehlers-Danlos syndrome (which I've actually had my whole life) and acquired dysautonomia (autonomic nervous system disease.) There much left to be answered. Sadly, I have not been the same since, and this gives me less energy to work with then I had before. I'm still determined though.

My music album will be mostly about humanistic concepts, about struggle and hope - but it's also catchy. This has been based on feedback from many others. So, people can either take in the lyrics, or just dance - though I would hope they might do both. Pop music, and all that comes with it, is a major passion and precocity of mine, and has been since I was very young. In fact, it's totally healing for me.

There were a few reasons why I held back on really pursuing my music sooner, some of which I did share on my fundraiser write up and on Music Story. Though I have regrets about the former, I can only deal with the now. It's now about "stealing joy" and taking a shot at fulfilling a dream that I took too long to move forward with. It's now or never. I've been long encouraged by my close friends and family to get on with putting out music. They are happy to know that I am striving to do this.

I don't want my condition and circumstances to define me or stop me from my dreams. I’m determined to try. I've survived through a lot, but now I wish to set myself free, and like my new single says "rise above", in spite of it all. Hence the symbolism of the butterfly. 

I hope that people of various backgrounds will enjoy my music, and find aspects of my older and newer content helpful, thought provoking, and enjoyable too!

Thank you. 

- Rosie Guedes aka. Bionic Butterfly

 

 

 

 

Copyright © Rose Guedes, 2013