Dreamerqueen

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

 

Disclaimer

**Dear subscribers/followers/supporters: In terms of social contact, I absolutely welcome and appreciate kind words, positive and politely constructive feedback and help, and help in terms of sharing out my music artivism and work! However, I ask for your patience regarding responses and interactions. I am only one person, battling and managing a very energy consuming and challenging illness, trying to forward a long dreamed of music career while I still can, in addition to having responsibilities as a mom and to family. For more information about my limits and preferred methods of contacts, please check out my succinct Social Contact guide :) **

Anti-bullying disclaimer:

At this point and time in my life, I'm dealing with a very challenging health condition. I may at times seem 'energetic' because I'm passionate about what I'm expressing and having a better enough day to present it -However, I am in fact physically energy and life limited, and in chronic pain. I have little energies to budget with, and it's tough. Everything I do, I do because it means enough for me to 'spend' that energy on. My priority must be my family, my illness' management, and my art; creating/putting out certain content as long as I'm able to. I'm trying to find/be at peace, experience joy whenever possible, enjoy my music and artistic stuff when I can, and keep with my work as much as I'm able. I have no time or energy for super negative interactions with people, or bullying. 

In the past, when doing my work as "Girl Outside" I experienced bullying, abuse and ignorant harsh criticism. I'm very glad that my work as "Girl Outside" was helpful and beneficial to some. Knowing this is comforting and makes me feel like the efforts I put into that work were worth it. However, I worked hard to overcome that hurt, rebuild my confidence, and move on with my music goals. This is tough enough. My boundaries are now firm. 

 

Boundaries:

I have zero tolerance for defending myself against people who cannot accept facts and educate themselves accordingly, with an open mind, if they are unaware.

The facts are: I'm battling Ehlers-Danlos Syndrome (EDS) and some of it's complications (such as dysautonomia and CCI) and I am on the autistic spectrum, diagnosed Asperger syndrome. Both these things are realities. No one, especially those who do not observe my personal life, has the authority to conclude otherwise, simply because I prefer not to show the most personal aspects of my battle, and to 'present strongly' in photographs and such. People see me 'presenting well' and assume that I am 'fine' because I 'look fine." However, EDS is a very difficult, painful and serious genetic condition, though it looks mostly invisible. Anyone who knows how I live today knows it is very clear, at this point, that I'm battling EDS. As for autism, it can be insidious in people. These things have been diagnosed after thorough evaluations by professionals such as geneticist, rheumatologists, dermatologist, neuro-psychologist, developmental psychologist and psychiatrist. 

I simply don't have time or energy to defend facts about myself. I know what I live and experience, and so do those closest to me. I have precious time and energy, it cannot get taken up being upset over ignorance and rudeness. I'm in the process of healing from past bullying and gaslighting. I regret that I allowed myself to be affected, and I'm making up for it now. I wish to be healed. So if you form such judgements, think deeper, open your mind, do your research, get informed, be respectful. If you do not understand my struggle enough to accept it, educate yourself instead of judging and criticizing, if you intend to support/follow me and what I do. If you cannot do this, and still wish to be ignorant and/or cruel, you are not not welcome here. You will be blocked. (Want to learn about these things, be one less ignorant person, and perhaps help increase awareness? That is absolutely welcome here.) 

 

Regarding Politics:

I ask that people please understand and respect my current political stance. I am neither 'left' nor 'right' winged, I consider myself to be a moderate/independent free thinker. I am an objectively curious thinker and my beliefs are really all over the map. I am quite socially liberal for the most part, but my beliefs are my own. I prefer not to categorize it. Please respect me when I offer my views in this regard, which I don't plan on doing in excess. I offer my views on the things I have experience in the most, and prefer to not take a polarized political stance. Please respect me, ie. 'take what you life and leave the rest."

 

Regarding difference in communication:

I'm a caring person. I'm aware of my character quirks and communication differences, much of which are related to my differences as a person on the autistic spectrum. I come by this honestly and I try my best. My tone can seem awkwardly applied. I can ramble and occasionally sound unclear. I may seem bold about things. I speak my mind, sometimes in atypical contexts which may sometimes be misperceived and misunderstood. Sometimes I can think more than I can say, and what I say comes out more "younger sounding" than what I am thinking. Some days are better than others. This is the way my brain works. Sometimes illness can make communication even more challenging, frustrating and/or inconsistent. I try my best to be sensitive and reasonable too. I think/see things from a different/varied perspective. That's me. Please be respectful. I ask for understanding. If you did not understand something I meant then politely ask me what I meant. If you are offended by something I may have said, I'm sorry - perhaps you may not have understood my context, or we have different opinions. Ask me. Do not jump to conclusions. P

Again, autism can be insidious, and present itself in many different ways, because everyone has their own personality - but there is often some kind of perceived 'awkwardness' and or 'oddness.' This is come by honestly. We try the best we can, and we have strengths, too. I have no time or energy to defend myself anymore over things I come by honestly, nor should I have to (though I am able to take responsibility if I said/did something which hurt another, usually unintentionally.) 

Note* I don't think there's anything wrong with playfully poking fun at oneself once and awhile, and/or my friends doing this towards me, in good humour. I'm not a person who gets offended super easily by this kind of thing. I myself can at times have a wry and sarcastic sense of humour which can at times be dark. However, there's a difference between the playful and well meaning, and abuse intended to hurt - which won't be tolerated.

 

Opinion re Autism:

When it comes to opinion about being autistic, I hold a simple (fundamental) belief that I mention in some blogs etc. One may not share this belief, but I ask for respect re: my personal belief. This is that autism/neurodivergence itself is natural. It's something people are naturally born with, and it is almost like a slightly different type of human, differently wired, neurologically and physically. This often runs in families, for generations. I believe we need more independent, non-biased research. Autistic and neurodivergent people have particular gifts and potential which I think, if channeled and nurtured properly, could (and will!) make an important contribution to changing this world for the better. I have spiritual beliefs about this also. However, I do believe (as I have seen) that autistic people seem to be more sensitive to acquiring chronic environmental illnesses and having genetic illnesses such as autoimmune disorders, Ehlers-Danlos syndrome, Fibromyalgia/Chronic Fatigue/ME, Mitochondrial disease, co morbid mental health and neurological disorders etc.. This is separate to being a neurodivergent person with naturally different processing.

However, this can cause confusion when it overlaps. Having one or any of these conditions can make being an autistic person (in a world not inherently hospitable) so much more challenging. I feel that this is where the public tends to mix up being autistic with these illnesses' presentations, which have challenging neurological affects (which may then be blamed on being differently wired itself.) There are various causes and we need more independant/non-biased research. So far I have seen an increased sensitivity and inability to clear environmental toxins, and the other one is prolonged exposure to stress and trauma. I do not know the answers, I remain curious and have questions which are part of my own journey. 

New stats suggest the average lifespan of autistic people is far less than typical. This is because of the illnesses themselves, as well as inadequate medical care and improper, mis-managed medical care. This happens to many people, not just autistics, but autistic people are really getting the brunt of it. This is at least partly due to autistic people's way of communicating their need for help is often misperceived, discriminated against, and judged. I believe this is a serious matter for the welfare and futures of autistic people. I myself have suffered a lot due to this problem. I am now in a position of being incurably (and possibly terminally) ill and for me, there is a lot of damage done to my health. I risk a probable shortened lifespan due to this, as well as limited income to afford seeing the kinds of doctors I need to see. I have a poor quality of life. I now have access to some (limited) medical care, which is helpful and better than nothing, but ultimately not enough with respect to my condition. I am really grieving this, but trying hard to re-channel it into my passions, and addressing particularly pertinent social issues as I am able. I have hard knock experience here. Please respect me, ie. 'take what you life and leave the rest."

 

Faith

I am pagan. I pray/hold faith by way of benevolent ritual. My faith has kept me going. I am also a practical person, I am logical, and agnostic. I believe in 'intention can take form" and I believe metaphysical energy is real, however, I do not personally believe in 'ghosts' or a God that looks like a man in a robe, or even angels with wings dressed in white. However, I do believe in the presence of 'guide and guardian' like light energy, and also, the presence of dark energy (which must be avoided and balanced.)  I ask for respect, and I strive to respect various religions also (though I do not support ones which practice things such as hate and abuse.)

 

Regarding "Attention Seeking" :

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, and not based in reality.

If you really don't like me or what I do, that's fine - but I ask for reasonable respect. I'm fighting for life and trying to reach bucket list goals. I will no longer accept gaslighting. Those who cannot be respectful to this will be immediately deleted and blocked, and ignored/forgotten about from then on.

Thank you.