N.M. Rose

Artivist. Music Artist. Writer. Vlogger. Poet. Creative. Fashionlover. Advocate. Ehlers-Danlos Syndrome ++ Warrior. Neurodivergent. Trauma Survivor. Redeemer. Relentless. Dreamer. ~YOU ARE WORTHY~I AM WORTHY~WE ARE WORTHY~OF OUR DREAMS~

© N.M. Rose Guedes 2018

Taking it back, hoping for my second chance:

I long for my life back because I'm not done with it. I'm a passionate and sensitive person and a creative, fluid thinker. I have a bit of a childlike heart, and I'm a bit of a 'nerd' too (though also a rebel - my friends have described me as a 'nerd-rebel.') I love art, music, nature, food, fashion, my family, my friends and life. I'm a little different especially in my way of speech and mannerisms, because of being on the autistic spectrum. Sometimes this has been really hard and caused trauma, though it's made me who I am. I grew up in challenging and painful circumstances experiencing hardship, bullying and abuse for being different. My home life as a child was also dysfunctional and abusive too. But I was a smart kid, and I learned to take care of and 'protect' myself young. I used my outlets to cope, like poetry, music, writing, fashion, and learning on my own time. I wanted to do more with it all but, I didn't always cope 'the best.'  Especially as I got older. There was a lot of trauma that had not been dealt with. A lot of the needs I had were missed, and I only discovered them later when I had to get help for surface issues. It all became 'uncovered’ which was hard to look at. This led me back to my passions as outlets, finally, though unfortunately I was falling ill by my mid twenties.

Over the years I have produced advocacy content such as blogs and youtube videos (starting as "a girl outside the box") to educate and help other adults on the autistic spectrum. It was also to try and help myself and heal. Aspergers is especially hard on girls and women, because it presents differently and is not often recognized properly. People have been helped by my work, which I feel good about. I now focus more on my music and art, though combining this with advocacy messages. 

The medical system here does not understand autistic adults very well, especially when we become sick, because we present differently, may panic more, behave differently, and experience sensory processing problems when we are acutely ill. They may make harsh judgements and wrongful assumptions which can be downright dangerous for the autistic adult. Autistic adults are more prone to genetic and autoimmune health problems which may be complex or unusual, like EDS. On top of that, the system here doesn't understand EDS and is 'zebra-phobic' about it. This is a bad double-whammy. It has been very scary, painful and felt dehumanizing for me and my self esteem. It has been hard to heal from trauma when I am constantly experiencing more trauma. With all the genuine diagnoses I have provided, I am supposed to have a 'care plan' now which would at least respond to me more humanely, but, as I have discovered it is not really honoured. Last time it wasn't honoured at all. I would give anything to have sanctuary from this. 

Sometimes it feels like it's hard to 'go on' but my work, art and people I love, especially my kids, keep me going and keep me fighting, with a sense of purpose. I'm passionate about life, about what I do, and the people who I love and care for. It hurts so much to go through this agonizing battle of slowly losing my life, because there's so much I feel I have yet to do. My life has been tough due to my experiences and now I am losing my life. My greatest dream would be a second chance at life, and to be out of severe pain, so I could spend more time with my loved ones, experience joys, find peace, keep on doing my work and making a difference. I'm not ready to give up. I also believe that if my art, story and work is shared with many, It'll hugely help to raise awareness for EDS, autism, and the serious patient care quality issues related to this.