Wednesday, July 19, 2017
Why I'm not obligated. Why I'm moving on and turning a new leaf.
I received a frustratingly disconcerting comment on my instagram, from someone who has watched over my various work over the years. She let me know her thoughts on my current status of online presentation (which is actually in transition at the moment.) So, let's call her 'Jane' for the purpose of anonymity. Though my "forks" (mental energy) are really precious and limited right now (especially since I've taken a social media break to finish websites and music) I felt really compelled to answer this question. I feel that this could be clarified now, to save myself the grief of having to answer to these types of critical "questions" later. In fact I see it as a subtle form of bullying ie. trying to "keep/cut me down" and I wish to shut it down now, and thus forever more.
Jane: "I would really like to see more on the progress of your child with autism. It seems as though you pushed away your whole issue on autism."
I will give you an answer of where I’m at, why, and why I’m not going to do that. Then I will not need to explain myself further. For one, I’m on a break right now producing my bucket list music album, and music is now my primary focus in terms of material I put out publicly. I haven't posted anything for nearly two weeks.
For two, I haven’t wanted to parade the details of my childs’ life on the internet. I’ve kept both my children lives hidden from the internet more so, not because I “don’t care” but because it’s our personal life. As they get older and express interest in possibly putting themselves out there publicly, they can do it, with discretion. Until then, I haven’t wished to “open all up” about our personal family life. It’s not because it’s bad or something to hide, it’s just our privacy. I show pictures about my family life in general, on instagram, here and there. Instagram also hasn't been the "principal place for advocacy."
Everything today and now is a real struggle, for me to function, daily. Some days I can barely walk down to the kitchen to make myself food and take my meds. This is all personal stuff. I work on things the way I do in hopes it’ll get better. The children have lots of support around them, their dad, respite workers,camps, they go out and do stuff a lot. I’m often too sick to go with them sadly, so it’s not as if I’m “recording” all of what their doing. This is the way we live, personally.
My boy, the one who has autism, is doing great at camp. I am so proud of him. I'd post that now as in a "mention in passing", however, I’m not posting anything online right now and not until the end of july, because I took a break to wrap music. Like I'd said on my accounts.
I didn’t "push away” the autism issue. It's still all over my blogs and videos. I did many of them. Many. It's there. It remains up, and will always be there. One of the other reasons I took a break is because one of my websites is a showcase of all the work I did on that stuff 2011-2017. One is a showcase organizing all the activism I did, to "close" it, and one is the music site, separate. I want the best of what I did to remain up and helpful.
People make choices to move on to other chapters of their lives. It's my choice whether I want to keep talking about autism over and over, which is exhausting after awhile. It's not that I "don't care" about my kid, it's just that I'm not keen on exposing my kids' lives and private family matters online. It's called censoring. It's my personal life. I share what I choose to for the purpose of activism and awareness.
There are major problems with autism when it comes to autistic adults right now. It’s called autistic adult self advocacy. A major issue with this is medical neglect. The former is all why I felt compelled to share my experience more so than my childs', specifically. Autistic kids grow up, so this concerns my child and others. Apparently the lifespan of autistic people is shortened and averages 40-60 yrs old. This is mostly due to things that happen to autistics in adulthood. Risk of developing chronic illness is very high due to genetics; Lupus, EDS, MS, etc. So I felt compelled to share this related experience. It's happened to me.
There is also a lot that I don't share, because it was extremely traumatic and/or it's very personal. Doing the activism and sharing what's needed to make the point doesn't mean I need to "share all." As I've matured, I've become even more averted to sharing too much personal of my life. I'll put a personal journal entry on my blog a bit, but even then.
It's very important, also, to know that there is a lot of conflict going on about autism right now. The language being used. Types of therapies. If you put things out there it's likely to be contested etc. I have no energy whatsoever for all the comment threads of debates and arguments. None. I even deactivated from FB at the moment. I need recoup. I wrote a lot about what it is like to be autistic .. and what happens when people don't get help. I helped some with this, and that's good, but I am too tired to keep doing it.
I am trying to move on because I have burn out. I am now dealing with a major illness with shortened lifespan. I have issues with internal organs. I'm on pancreas, liver and heart medications, spine is in bad shape, hoping for surgery in the future to improve my life quality etc. if I am even a candidate. It's best I don't elaborate too much other than say that my life quality is quite limited and poor. Regardless of what people "think they see" this is my reality. Period. Much of illness is overall invisible (compared to how bad it actually is) but I'm really sick. It is now time to play and enjoy. That is my right. That is what I am doing.
I'm working on my bucket list music album, which is a choice that any reasonable person should respect given my situation. My husband and good friends support me getting this music out and pursuing it as it was my dream since a child and long overdue. I sacrificed it for the sake of the community activism and although I'm very glad to see that my work helped some people, it is time for me to do this for me, and focus on my music and having some fun. Because I am always in fatigue and pain, I need to try and "steal joy.”
Yes, there are serious human rights issues with care for people with the illness I have, EDS, and this needs to change. I’d almost say it’s more serious than the autism issues, but they still need work too. All this overlaps. However, there’s lots of other great advocates out there right now. I don’t need to keep “taking it on.” I’ve done what I was able to do. My younger child has the gene to be affected by EDS in his future so that concerns him too, improvement of EDS care. It’s a serious issue.. and a lot of people on the autism spectrum have EDS, there are relations genetically. I've said lots and several others are talking about it.
Also, these issues all relate to bigger things. It's more broad than just these matters. It's about the state of the world and that is more what holds my interest at this time too, though I have to express that through art, or rather "artivism", to be able to do it non-toxically. That is what my lyrics allude to, which is more relatable to many, and again, in a broad way. The bigger concepts here are struggle and hope. Evolution. This can be expressed through art, while I have fun, and keep my family and personal life censored to my comfort level.
My approach now is going to be like this, art-centred with dashes of "artivism." Hopefully, some people may see my rising above and pursuing something I love deeply, with the only energy I have to use, inspiring and empowering. Hopefully it'll bring light to the issues I deal with and worked so hard to talk about/advocate for more specifically, in the past. As for all the nitty gritty specifics, I left it all where it is, including in this blog, Brazen Musings of a Rainbow Zebra. But I have "hung my hat" in terms of continuing on with such assertions, re the activism, in the ways I was going.
So please think twice before criticizing my choice to walk away and keep it lighter, rise above, play, and do something nice for me. My family benefits when I'm happier and not all "fighting in angst." I just need my art and my music to heal. I need healing. The other stuff is over. Please respect that, and respect me, or leave.
I cannot and will not tolerate any trolling or “critical type bullying” i.e. picking me apart because I look the way I do so you think that means if I dress up and have fun I’m being an “arrogant b***” so I better wear less make up and get back with the self-sacrifice activism to “prove my humility" or otherwise I have somehow "turned conceited." I can see why that could be assumed, but in the same breath, given the circumstances, it's really angering because it's an ignorant assumption. It is a form of trying to cut me down ie. pull me back down. I have worked hard to try and heal from the inside out after that has happened to me several times before. I will not jeapordize that now. I know how that kind of "cutting down" works and how that feels when it happens. I feel it. But I can say "no" and I am saying it now.
People don't like me calling it out for what it really is? Too bad. This is what it is. But been there, done that. Not accepting it anymore. I nearly sacrificed myself over that sh**. Done. I am entitled to play and enjoy.
For the first time I have long painted nails, not fake, natural - and I love it. I'm not apologizing for any of it. I’m pretty well terminally ill now, I live in severe pain with shortened lifespan, and it’s time for me to “let it go” like the good ol' song from Frozen says, and just be with my art.
I don’t need to put my children and family on display on the internet. I don't need to be thought of as "self absorbed" because I choose to censor most of my personal life and, for once, put my dream first. This is about music art and selling an album with hopeful, purposeful but also fun and catchy lyrics. An album that will be helpful to people too, and be enjoyed, but while I'm also enjoying. That is what I want to do with the rest of my time here on earth. Please respect that or leave. Thanks.