Musical artivist. Independent producer. Composer of catchy and meaningful synthpop tunes. Survivor. Dreamer. Fashion Lover. Woman outside the boxes. Joy stealer. Advocate. Truthseeker.

© N.M. Rose Guedes 2018

Hello content consumer, supporter, friend, or critic.

If you would like to connect with me that’s awesome, but please consider reading over my social disclaimer to understand what my limits. :) 

I am dealing with a lot fighting illness. I will not tolerate any bullying, abuse, harsh criticism, cynicism or anger towards me. I have dealt with a fair bit of bullying and abuse in the past. I am fighting illness and need to heal, so today I put up boundaries. 

**As I just announced, I am having to fundraise try and get the surgery and subsequent care which I have been told I need, by the EDS specialist/neurosurgeon. This is to help correct my C1-C6 neck instability which is a dangerous thing to leave untreated. It is hard for me to be in the position of having to do this, but I have no alternative. This will be a fight for my life, and I will take it one day at a time, using my art to cope. I've tried to make the campaign as positive as I can by offering the incentive of a gift: A special edition hard copy of my music album (or digital download if you prefer.)  Help is very much welcome. If you are interested in sharing and rallying, ideas re: the campaign, please see "Get The Album" page for more information on how to get involved.

If you don't like what I do, be respectful and move on. I know who I am and what my motives are, and they are very genuine. Making a pathalogy out of my artivism and mission will not be tolerated. I am fighting for my life and I will not accept further hurts. My Youtube comments have a filter. I will briefly rebuke (if necessary) then delete and block abuses. Possible misconceptions about me can be clarified below.

Health: Though my health condition (Ehlers-Danlos syndrome) is unusual and even 'unique', it is very serious and very real. EDS is a mostly invisible but serious condition. I am a determined and passionate person who tries to rise above, and I usually present my better moments, this masks being ill. However my confirmed diagnoses and many private moments of suffering make the facts inarguable.


I am diagnosed on the autistic spectrum, I also have neuro-cognitive difficulties due to my health condition, and I deal with post traumatic stress disorder. Though I am smart, I have communication disabilities and differences. With being autistic plus the other stuff, communicating can be a struggle for me. I'm strong willed and determined anyway, and this is what may come across. The ways I express may seem odd or different to you, and there are factors. I am quirky and I have language differences and idiosyncrasies, and expressive language differences. Sometimes not all of what I am thinking meets my lips properly, which can be frustrating. I may ramble or say, express or word things a bit differently. Sometimes the way I express may even get taken for being a 'dishonest performance' because I seem animated. It's just the way that I express. This couldn't be further from the truth, as I am a very genuine person.  Consider learning about this and shifting paradigm with an open mind rather than judging.  If you aren’t sure about something I meant, ask me. You may be surprised to find I meant something different to what was assumed.

Regarding "attention seeking":

Please respect the way that I express myself as a music artist and amateur model. Bullies and critics have sometimes thrown the accusation of being "attention seeking." Ok - well yes, in a certain context, at certain times, in certain ways - I do "seek attention" - with purpose. Other times, I wish to have privacy. I think this is clear. But this is also common among self-advocates seeking to raise awareness, and it's common with anyone involved in the performing arts. So yes, I aim to gain specific attentions, but not in a negative or shallow way - in a positive way for the purpose of making a difference, for increasing awareness and in this being helpful to others (as well as myself.) Using "you are attention seeking" in the context of an insult sort of makes no sense, has no fair base, and distorts the reality of what I am actually doing as I decide to put myself out there. My motives are understandable, fair, passionate, heartfelt and definitely sincere. They are not in the least bit sinister. Referring to me as an"attention seeker" in a way which is meant to be some sort of cruel insult is done so in a perversely negative context. It's distortedly cynical.

Regarding my viewpoints:

Please respect my viewpoints in terms of what I share on youtube and blogger. I am simply exploring, pondering and figuring out how I feel about the social/political scene at this time. I am pretty well socially liberal, though I prefer to identify as independent and freethinking. My viewpoints may evolve over time, but ultimately I am keen to seek balance and moderation. I support better communication, less arguments, and more mediating amongst activists. I am striving to be more this way myself.

If you don’t like what I have to say or do, and my opinions that is fine, but do not attack me for it. I don't have a problem with someone peacefully expressing a different viewpoint and explaining why you feel this way, as long as you are not attacking me. People have had different experiences, and other viewpoints may be understandable, as long as they are not abusive and mean ones. You do not have to agree with things I say, or what I am doing, or how I am expressing myself regarding my art or social activism views. This is all fine, but I do not have the energy for any more abuses. I will block/delete.


If you want to support me, please the more the merrier, and thank you so much. I am in a real bind because I am stuck in a country that does not understand how to care for the disease I have, does not have the resources, and for this reason treats EDS patients very badly. I have felt I have no choice but to 'cyber-busk' with my art and my work, in order to try and raise the funds I need for my surgery. Cyber-busking is not cyber-begging per se, and I feel better about that because I can give back and be of help to some. I am also here to be helpful and make an impact, so if you cannot financially contribute that is fine. If you support me, however, please consider sharing. 

...and even if you do not support or like me, please try to be respectful of my need for peace, in the face of what I am going through, and leave me be. Abuses will be blocked. All YouTube comments are moderated. Thanks