Note: No copyright infringement intended with Regina Spektor’s song “You’ve Got Time”………..
I’ve made mention on Facebook lately, of my love/hate relationship of Halloween. That probably has to do with being a fat child and the fun of trick and treating and being eating disordered from the time I was a young child . It has to probably do with the fact as an adult, that while my 21 year old son had a Mother who took him trick or treating, volunteered at all his holiday parties at school while in elementary school, had seasonal traditions, my 10 1/2 year old daughter has very little holiday memories as she has not lived with me for 5 1/2 years now that I’m not raising and I wasn’t the best person to take care of her the last 2 years if not longer of her life when she did live with me. And my son who’s 10 1/2 years older then his sister was old enough to witness what was happening to me and had a completely different mother and it was horrifying for him to see me decompose mentally…While I’ve had to somewhat make my peace it’s in her best interest and she’s very happy, healthy and thriving, living with my parents, I can’t not help be haunted that while I did make some mistakes so much of what happened to us should have been prevented some how and I can’t help my and the systems that failed my children not continue to haunt me and what it did to the rest of my family.. Much more so then how much I was bullied on Halloween and all year around both as a child into adulthood…But so little of the positive stuff I was able to do for all 3 of us happened before my daughter could have any real memory of it. She doesn’t remember going to Florida or Wisconsin Dells. Or our seasonal traditions that happened outside of our house before she was 2, when the majority of that took place…I remember Zoe’s first Christmas (we are Jewish but I’m digressing) but I cannot remember her first Halloween. I remember taking her to Valentine’s Day Dances and volunteering at her preschool but in my case I have no control of what I remember and what I don’t anymore and that scares me the most….Halloween or not….
But speaking of things orange and black…. How about that show “Orange is the New Black” on Netflix??? I didn’t pay attention to the original buzz, truthfully. I think part of it was fear. And it was for good reason…I just started watching it and pretty much consumed the whole season in about a 2 week period of time, a couple of weeks ago… I found the show groundbreaking and fascinating like most. I also found a lot of relatable aspects if you read my original blog on here. So the horrifying parts, were truly horrifying as I lived some of it….I’d see people smack the shit out of someone for no reason and I was lucky while threatened with violence it never happened physically. I’d see people take a shit or piss on people and in places around the group homes. I also saw people when bringing up concerns of mistreatment (such as myself) get unfairly punished for it the 15 1/2 months “I did time” in the mental health system…..
Even though the show is fictionalized, I am sure that the stories that come out of that show is someone’s truth…. My 1st blog on WordPress (I have a blog that I haven’t written much for a long time now, about my gastric bypass reversal on Obesity Help which is extraordinarily kind of them to host, given the fact that site is very heavily bariatric surgeon supported, and the owner of the site was kind enough to check in with me to see how I was) was primarily about my Summer of 2008, a little before it and a little after it both my life and the blog itself being a trainwreck….
So the hate relationship I have with the show is that while that summer and the events before it and after it, is haunting me, especially as of late, part of me wants to know if I can pull a “Piper Kerman” and somehow figure out a way while staying true to the activist I want to be, of somehow making money and bringing awareness to mental health issues and giving a voice to those who have none. Especially for us who end up “doing time” in the mental health system. But I have a bunch of cognitive and neuro issues that are not just irreversible but progressively getting worse due to the past obscene amounts of psychotropic drugs I was on. Due to the long term severe nutritional deficiencies from my gastric bypass complications that also played a large part in the damage I sustained. Why it’s getting worse when I’m not on those meds anymore (not my decision, both my Primary Care Physician and more then one psychiatrist have said I could not be on those meds or have electric shock therapy and live independently, but more about that, later)
My life circumstances like Piper’s are quite unusual. Other then the severe depression that comes with being bullied one’s entire life for being fat, I was extremely smart, and came from an upper middle class family and a productive member of society. I kept jobs for a long time and worked to make money from the time I was a teen if not younger. I also did volunteer work which required me to mandated reporter when I did volunteer work before my kids in a domestic abuse shelter on a crisis hotline but had a lot of interaction with the residents when volunteering. I also facilitated before my daughter was born, for years, a single parent support group. Both volunteer and in a paid capacity for the single parent support group. I was a mandated reporter who was required by law to report cases of child abuse to CPS which did happen in both positions that I had to call them as well as I had participants in my group who were court mandated to attend my support groups. To end up on the other side as a parent, 12 years later with a Child Protection Services AND an Adult Protection case for being a hoarder at 37 and nearly getting committed after my “one and only” suicide attempt in 2008 and nearly getting committed at the age of 38 1/2 , which led to 15 1/2 months in the mental health system and in group homes from August 2008 til the end of 2009.
I put up with an enormous amount of crap in the last several years doing the advocacy and activism I do as a medical and mental health activist and as a long term weight loss surgery peer for support but also as a size acceptance and fat acceptance advocate. The details of exactly why I do this have been mentioned in my past blogs and will still continue to be a theme for future ones. I also get a lot of criticism about my advocacy and activism both because of what I choose to advocate for and the fact that for someone who had an apocalyptic breakdown, it gets questioned on whether or not I have the ability to do this effectively and without risking harm. I do try to safeguard my readers by disclaimers I’m not a clinical professional as well as by having clinical professionals read my blog.
I’m not trying to play a medical or mental health professional on Facebook or the internet at large. Again a lot of systems failed me without me being the total victim. They also fail a lot of people. My honesty with my weight loss surgery complications, support systems that should’ve protect my children and I when I physically and then mentally started to disintegrate, have helped a lot of other people. Also note not all my medical and mental health issues are due to my gastric bypass nor did I or my surgeon have any inkling that I had the problems I did based upon my ability to be as functional as I was. I’ve had a lot of people privately reach out to me with their most painful aspects of their lives, by sharing what I have and have gotten help for their sakes and that of their children. I’ve also because of trying to remove stigma from mental health issues whether it be suicide or hoarding, help people understand who have had to live with that, to get the support they need and realize that lots of times because one cannot make rational sense out of irrational acts especially those who have loved ones who are mentally ill, they understand better they did nothing wrong by being in those circumstances and a lot of times those who hurt them didn’t mean to, as much devastation having to live through that caused . Both before launching my blogs and especially after…
It would be enough. But I still kinda want to do more. I get accused a lot of having the time that I do to think about things, of having too much time on my hands. I also get assumption of underestimating of what I exactly do with all the time I have. A lot of time I do have is spent on doing advocacy of some sort. It also though takes an enormous amount of time to do the most basic things now with the disabilities I do have. Severe chronic pain diagnoses with cognitive brain damage and un medicated Bipolar 2 disorder make it hard sometimes within a 17 hour period where I have to get out of bed, because of pain, of do anything but be online to distract myself from pain but not do anything else so I don’t fall. It can take 6 hours from waking up to get a glass of water. It can take 45 minutes to make a tuna fish sandwich (and I usually cannot eat within 3 hours if not longer when I wake up due to my gastric bypass complications). Not because I have the luxury of “you’ve got time”….. I have to prepare myself mentally if I go out by myself because I have a falling history and because I have waivers that allow me access to clinical professionals if certain things I fall out of whack, such as I can be horrible with money (other then rent) that I can’t accumulate too many incidents that prove I’m not capable of managing my own affairs. My life as a proactive single mother of 2 who worked full time and ran a functioning loving household with children in activities was a lot easier, believe it or not, then my life is now. I could do so much more then with a lot less effort…
While I complain a lot like the fictionalized Piper on the show “Orange Is the New Black”, there are certain things that people when they’ve had their freedom of choice taken away for any period of time, will never take for granted. I’m glad the real Piper Kerman as much as she’s chosen to reveal of herself, is awesome in the advocacy she does and it’s similar to reasons why I do my advocacy and activism. To give a voice to something that is of a real issue that no one really who’s gone through it wants to talk about it because of the stigmatization. But we can’t help NOT talk about it, because so many people who go through the system of any kind, have so much shame. And there is so much abuse in it. Some of it by fellow peers, more if it is by people who run the system and safety mechanisms that are supposed to keep us safe which from both a victim and activist point of view is very hard to understand being failed by those systems and people who should be protecting the vulnerable and defenseless…
I’ve had the choice taken away of not being able to leave a place. To go outside. To eat what I want. to smoke a cigarette. To have to account for every action and everything I say. To have to take medications that were clearly ineffective in having any therapeutic benefit but caused both enormous physical and psychological damage but that I mal absorbed any potential for anything other then that I was zoned out.( But not zoned out enough to know while I didn’t belong in the system, I wasn’t initially after my suicide attempt to be in society on my own with my children or without them, that was reinforced when I physically got sicker after I got out. Also a very important note, people who are court ordered to take meds sometimes think they don’t need them when they do. That decision of medication management in the mentally ill can never just fall solely on the patient for that reason) The fact I don’t have to be accountable to everyone in my daily life is a big deal that most people will never ever realize how once that is taken away, that it’s never taken again for a minute, for granted EVER again.
At least in my case where it’s a mixed blessing to have all these cognitive, neuro and psychological disabilities, damage and barriers but have the awareness that I have them so I am not a safety hazard to myself or to others. It’s very difficult to do this un medicated. I am lucky I have the waivers that allow me the support services I have as a safety net. It’s not realistic though that I’ll ever have the health I need to raise my daughter like I hoped I’d get her back in 2010 once I got out of the system, but then nearly died a couple of times due to my weight loss surgery complications that led to my reversal. I can’t drive a car again. If it came down to it, where she had no one to raise her but me, I could do that lovingly and legally (my parental rights were never taken away from me as I gave up custody of my children prior to my suicide attempt) but not without a lot of help. I guess I for self preservation figure that I hopefully took all the “hits” so to speak that if I can’t raise her, someone in my family can.
It’s very hard to write these blogs when everyone in my life is so private in my family, as well as in my private life. My children know I blog and I have their blessing, my daughter is too young to know what I blog about so that is why I am blogging about this and my son is 21, now but still ok with it. She does know I blog about what happened from a medical perspective of why she doesn’t live with me anymore. Because I can’t raise her, and for my self preservation, I’ve had to stop playing “what if” about so many things. I didn’t choose to have the chemical imbalances that I do. I didn’t choose to have the predisposition to be eating disordered from the time I was a very young child. I didn’t choose to be bullied and not know how to defend myself. I didn’t know this when I had children that I had pervasive mental health issues. And if I knew this, I wouldn’t have risked having them, so it’s a good thing I did not know as much as I’m never going to be at peace that I wasn’t able to raise them to adulthood and support them in any fundamental way and I haven’t been able to for years now. But I love them more then anything and I’m glad they are here, and so are they.
Going forward I can only hope while I still have the capacity is try though in my small way to do the advocacy and activism I feel passionate about. I don’t want my daughter or my son or anyone’s child or any adult to live in a world where it’s ok for people to mean or violent to one another. It can’t be our normal that we live our lives dependent on digital devices and then use them to create harm if not death in people. It can’t be our normal where we stigmatize and victimize the vulnerable but non violent. Initiatives have to be in place to safeguard and protect people’s physical and mental well being. I want to be a part of those initiatives. While I can’t defend in any way violent nature, for some strange reason I can understand it, even if I’m not capable of perpetuating it.
People become hateful or apathetic to both strangers and loved ones alike. Both horrific intangible and tangible abuses are becoming every day news events that even the kindest people for self preservation have to develop selective amnesia so we don’t live in a society that has daily life PTSD, in this modern but very violent world of ours as much as there is still a lot of good in people. But it can’t be our normal regardless of why people abuse and kill that they continue to do so without some kind of major initiatives in place in evaluation, intervention and treatment. That those who are capable of life ruining, if not life ending actions of re-directing the ability for harm to do good. Life isn’t a really cool violent movie or video game. People get harmed and killed because of their apathy or hatred towards another human being or wanting to commit revenge if they’ve been harmed themselves.
Not everyone can be saved but more people can by awareness and wanting to do something about it then pretend it doesn’t exist because of fear. Just think in the last 12 months of how many adults or children did not have to die, if major initiatives were already in place. Invading people’s internet privacy is not going to change this. Trying to figure out people’s mindsets and why sometimes even the most loving and caring people are snapping and having initiatives in place for redirection and rehabilitation is the ONLY way this is going to stop…I’m not afraid to talk about taboo subjects. I am not afraid to develop a dialogue with people who have horrible intentions towards another that if they feel so strongly of the harm and destruction they create, why do they do it in secret, I just obviously can’t do this of my own accord only as part of an initiative. I don’t believe much in as a mental health activist as a defense “not guilty by reasons of insanity”. I don’t understand that where people are losing so much hope in human life that they feel they have a right so horribly misguided that they take those who they say they love, their right to life whether they think they are doing them a favor or doing it out of revenge. I’ll never understand why people do that as many of us do not unless they are the tops in the psychiatric world, that doesn’t mean non psychiatric people can’t work with psychiatric professionals on finding out why people do this and redirect that devastating energy to do positive things or at least be apathetic but not to the point where people don’t value which should be a right to a peaceful enjoyment of life.
Lastly, because I hear this so often about others who resent the time I have and are busy on digital devices and multi-tasking, if you accidentally kill someone while operating a digital device when you are doing something that requires your full attention, you’ll have all the time in the world to be haunted by a careless mistake that turns into a tragedy for not just those you harm or kill , but yourself and your loved ones. Please keep your focus at tasks that require your full attention on the task and put the fucking digital device away or have safety mechanisms in place if you have to talk to someone and do something like drive at the same time regardless if a digtal device is a distraction or not….No one has ever regretted not spending enough time on a digital device when they are needed for other things that require their full focus. A lot of people have an enormous amount of regret (this is also going to be a whole separate blog) for actions or neglect due too much time on it, myself included…
So here is my 4th blog for ya…. It’s kind of a lot at once…. While none of us are guaranteed a certain amount of time, I’m guaranteed for sure not to have the time I would like. That’s why I can’t put off things like this that is so important to me. I want to make a difference, I have an idea on how to go about it…. The little delusion I allow myself to have is that as poorly as this is written, the thoughts articulated are significant and that it goes viral because it has the potential to help a lot of people…..
The little delusional self serving side of me, is hoping there is a book deal and that Jenji is going to try and come in contact with me….At the same time of course it scares me to death, too… But the truth is, I just hope that if nothing else, the fact I’m haunted by not having a indefinite period of time to get what I want accomplished, that something about this helps people. The fact that I’m still alive, that I can read and write, that resonates with this. If I would’ve died in 2008 or in 2010, there are so many memories for as much as I have forgotten, I wouldn’t have any. I also wouldn’t have the opportunity to do this… Life is precious and no one has a right to take someone’s peace of mind, let alone another life….
*** Discussion questions for this blog or just to think about… You don’t have to answer all or any ***
1. Are disabilities of another especially mental health or cognitive enough for you to discount what someone says?
2. What are you are fears about talking about mental health whether they are personal opinions you have, such as those of us with mental illness that some life instability has the potential to adversely effect you somehow?
3. What do you do to foster your best mental health and that in those you love?
4. Did anything regarding what I said about my societal fears resonate with you or do you resent it or do you think I’m being an alarmist?
Bonus “lighthearted” questions to ponder or answer ……
5. With Piper’s character on OINTB did it ever strike you if Carrie Bradshaw, if you were a “Sex And The City” fan ended up in prison, she’d be just like the “fictionalized Piper” or better or worse in the whine department? 😉
6. If you watched either show, who is your favorite characters and least favorite and why?
7. If I’d ever get a book deal or show about my life which would probably would be called ” Crazy Is The New Cool” (and that can only happen if I find someone who will write it, would you read or watch #CITNC 😉 note: There are a lot of aspects of mental illness that are not funny whether it’s harmful to one’s self or to others . But if I didn’t crack a joke at only MY expense, I’d cry all the time. I’m not mocking any aspect of mental illness at all in any other individual, ONLY making a crappy but kind of funny joke about something not funny as I can’t be in uber activist mode all the time……