prefered venue of online support for mental illness short version

Hi everyone,

Thanks to those of you who have commented/ liked my previous post both on the blog and on the e-mail lists I’ve posted it to. I do realize that it was quite a long post! So will shorten it and hope it’s easier to read through quickly and provide thoughts.

My purpose: To do a little study on what is most popular in terms of venues for online support for those with mental illness. I’m purely discussing support venues for those who have any kinda mental illness in general with no specific population in that group singled out. venues and thoughts I’ve gotten so far.

E-mail lists:

Pros: more personal connections with members than forums/ facebook groups. Good for people who prefer doing things through e-mail as it can be more simple to use. More accessible to people that are blind particularly groups.io

Cons: is an older venue many people haven’t heard of it. Often not well moderated and easy to spam can be difficult if it’s a small group and one person is dominating or people there for chat purposes only. People may be reluctant to put their e-mail anywhere where they feel like people might find it. Might not know how to use or think the website feature of the e-mail list is safe/ will work. Worried about their e-mail box filling up with a high traffic list and might not know how/ want to create another e-mail address. Sometimes no one is on to talk at all.

Facebook groups:

Pros: lots of members on the groups to talk to. People who love and use facebook for everything have easy access to support.

Cons: difficult to admin/ moderate large groups such as the ones currently available. People often post things and there’s no way to prevent it, spam triggering photos ETC. A lot is up to facebook admins and so a lot is out of the group admins hands. Higher risk of viruses with the adds (I feel) than with forums or e e-mail lists.

Forums:

Pros: A wide variety of perspectives. Can block a person if you don’t want to hear what they have to say and still get support. Can be very well moderated as in psych central. Good interface for sighted people. If someone wants to say something/ ask a question that they feel shy about asking in a smaller group environment such as an e-mail list they can post to the forum and feel better about getting it out there to a more anonymous crowd.

Cons: Can feel less personal than an e-mail list with not knowing people’s names only screen names. Sometimes not very good accessibility for blind people. If you’re not an admin sometimes it’s hard to deal with rules/ policies or getting account shut off/ posts removed.

Youtube community:

Pros: get to see/ hear people say what they’re going through and respond in a more personal way as audio and video lend themselves to. Can also private message. There are many in the mental health community who have been youtubers for years and are quite welcoming. Even if someone doesn’t respond to something you’ve put out there it can stay up as long as you want, and so years later someone can find it and know they’re not alone by seeing and hearing the rawness and emotionality of what you’re going through.

Cons: with google linked with youtube it can be difficult to set up an account as you have to go through google and it’s a long process. The crazy adds. Often not getting a lot of responses in comments for videos. Not being able to do video responses anymore which cuts back on sense of community. No feedback is discouraging.

Hope this helps make it a more concise post. Basically looking for the most popular venue. Wanting to decide whether to close my general mental health list or not as almost all current members are members of my other active lists and so don’t need to be sitting on an inactive list as it’s not necessary. Would like feedback on where I could best use my talents in the different venues out there. Hoping thispost is easier to read and so people will feel more able to comment. Would appreciate more thoughts! Especially experiences on different venues and how you’ve liked getting and especially giving support there as an admin/ moderator ETC.

what’s people’s prefered way of geting support for mental illness online

Hey everyone,

So I was just sitting here thinking about the different forms of online peer support around mental illness. And how for so many people it can be all the support that they feel is available. People can feel like friends and family don’t understand or they’ve worn their friends and family out, even if it’s just the depression/illness making them feel this way. They can feel like they want support other than their therapist but not have anywhere to go. Or just would rather get anonymous support.

For these and so many other reasons there are so many different avenues of support available online.

Forums.

Sites like psych central have had different forums for many years. They’re free (mostly just ran into one where you actually have to pay the organization and I couldn’t believe it!) anonymous and easy way to connect with so many people going through all sorts of challenges that you are. People are under generic usernames so it takes the fear of someone you know finding out. People do have the usual for your own good suspicions about opening up to strangers online but if well moderated can be a good experience.

I was on the psych central forum for a year or so particularly the psychotherapy one. I found many people to be extremely supportive and empathetic. But there were others who could give harsh feedback as if they know you inside out and how things should be going. This turned me off the forum, that and the feeling like these were just huge numbers of nameless people and I wanted to get to know people in a more personal way. Which is why I started my e-mail list.

What are people’s thoughts on forums? Any good/ bad experiences? Forums you’d recommend?

Another reason I left psych central is I hated the need to have to use something that wasn’t very accessible to my screen readerand having to scroll down a page with the arrows as there is no headings or be sure to arrow over to buttons because they’re not clearly displayed got old. As usual with sites and the blind it was working fine when I got there in the beginning then someone updated something probably to do with some stupid let’s make the screen look nicer issue and it got all out of whack. Oh well.

E-mail lists/ groups.

I’m not sure where I got the idea to start an e-mail list/ group I honestly don’t. I know I joined a couple yahoo groups for the blind and there was some discussion on one about people who have been abused that was so painfully off the mark with people getting hurt feelings very quickly, the moderator not at all experienced in this subject just said to stop talking and “go to our corners.” ETC. I knew then there had to be something better out there. So that’s how I created blind mentalhealth. But anyway since then especially recently as I’ve run into so many facebook groups I’ve discovered people are suspicious and reluctant to join an e-mail list/ group and many don’t even know what one is.

There are many platforms for e-mail lists/ groups. Yahoo groups used to be really good until they did some major updating and basically screwed up the site for everyone. But we’ll take their site as an example because it’s most well known and explains it clearly. So when you go to a yahoo group I think there’s a thing that says to join and you put your e-mail in. Here’s where people start to panic because they don’t want “their” e-mail associated with something like this afraid someone with bad intentions will get ahold of it etc. Well to solve this you can have an e-mail address just for groups you join which would separate group messages from your regular mail. There are settings on the group page to get no e-mail and so you can work with the group just as you would a message board or forum, writing, responding to and reading all posts on the site. This is something I really wish people would try out. I try to explain it and they just don’t seem to believe me. Also if you pick a good group, that is one with private archives that’s well moderated, you can probably tell that within the first few posts to the group as in whatever you start reading/ when you do post, you’ll probably be ok. Yes I’m sure there’s probably a way for some crazy bent on destruction hacker to figure out how to go in and get people’s e-mails even though good groups set it so all addresses are hidden ETC but I have yet to have a problem with it.

I’m very curious though about people’s thoughts regarding e-mail lists/ groups. As yahoo groups went down the drain other platforms have come out. Most recently groups.io which is totally safe and accessible. I believe there are still also google groups. Not sure how accessible they are I tried to get blind mentalhealth over there and it was the most frustrating day ever so yeah. Anyway I want to know people’s thoughts on e-mail lists. Because obviously my blind mental health group will be here for ever and ever and I’ll always take good care of it. But I don’t want to keep shoving my living with mental illness group at people if they’re not interested/ afraid to use e-mail lists. I’d like to ask people so I can know where to go next in terms of where to put my energy in supporting people with mental illness in general. Is there something I can do to make my e-mail group more appealing to people, promote somewhere I haven’t thought of ETC?

Facebook

I think I was trying to find places to let people know about blind mental health when I discovered facebook groups. Previously I had had my sister set up a profile for me years back because well everyone has one and that was about it. Really didn’t post much of anything. Sometimes read people’s walls ETC. I was thrilled to discover that they had these different groups for everything you can imagine.

I got an insight into why no one knew about e-mail lists anymore/ never heard of them because this was like the new thing. I noticed a few problems with it rather quickly. First many groups especially a lot of mental illness related ones have literally thousands of members! I never saw anything like it. And it’s just as unorganized as you would think. I forget how many admins they have on these groups but there’s no way you can moderate that big a group effectively I would think. Plus they’re constantly having problems with spam and virus adds getting on the group which I know can happen with e-mail groups but it hasn’t happened particularly on groups.io. And then you had people posting offensive/ triggering pictures, having issues with a lot of this being out of the mods control as it is facebook that’s responsible for the groups being on there, like in the end people’s accounts can just be closed/ suspended and it has nothing to do with anything in the group and just other really weird difficulties that I don’t think would ever come up in another setting at least that I’m aware of.

Part of me wants to make a group just to try and do it right LOL! But I’m not sure how accessible it is to admin. Plus it’s just soo weird having to scroll through all those posts to find anything and not get e-mail updates like on a list ugh I just think it’s soo annoying! In spite of this obviously a lot of people love it or there wouldn’t be thousands of members. I just don’t know how to make a group in that setting a secure drama free place which I’ve basically mastered how to make an e-mail list that which is why I’m such an advocate for it.

Youtube.

I didn’t start making videos until 2012 because I finally got a computer with a web cam. But I remember being on youtube and watching all these videos and it seemed like there was soo much out there in terms of mental illness support and people making videos and it just being amazing. I remember this user named SFJane. She did all these videos about her life and having mental illness and how she got better. She now has it in a book which I hope to read and review next. But it was amazing because all these people whether they agreed with her or not (she has definite anti mental health system views) would just be watching her videos and so engaged with her in discussions. I’ve heard from people like Tomy Jamison that there used to be this huge DID community on youtube and it was amazing. I don’t know the history of youtube but I know things got worse when they made the “new youtube.” Where it’s linked up with google and you need a google account to join and you can’t do video responses anymore you can’t see your subscribers subscribers. And then there are the stupid adds! . And it would make sense that that would really cut down on the huge community feel of everything. There are still happily a lot of people who post about mental illness and connect up on youtube. I never would have known Tomy Jamison who’s this amazing woman/ DID system if it weren’t for youtube. Again I want to ask what people’s thoughts are on youtube and the world of vlogging for mental illness support? Because again I’m putting out these videos and overall am not getting a lot of feedback or views and am just wondering what people’s thoughts are on the issue.

To sum up this whole thing: I’m an extremely passionate dedicated creative supportive person. I want to put my energy where it’s most needed and be in the spot where I can connect with the most people around what matters to me/ them. I did that with blind mental health. That will be my online nitch forever. One day I’ll get an award for starting, what people keep telling me is like the only safe place they’ve ever known of for blind people with mental illness to just go and be honest day to day hour by hour minute by minute about what really is a life changing and daily struggle.

But I want to find that same space in the general mental health world which I actually thought would be way easier than finding people who would join my blind mental health group. It seems to be way harder even after months and months of just promoting. So I figured instead of just promoting I’d ask people for an honest evaluation of the available online resources and to let me know what they prefer using. And then I can go from there and just be where the most people are. Thank you for reading this huge long post! And please please comment! If you read you have to comment LOL! And share with as many people as possible even if it gets facebook group admins mad LOL! I look forward to getting some really good feedback and going forward.

Book review: Mummy’s Little Helper by Casey Watson

Hi everyone,

The book I’m gonna review is Mummy’s Little Helper by Casey Watson. Casey Watson is a foster carer in England. She has written many memoirs about the different children she has fostered over the years. She and her husband Mike do a special behavior modification program meant to help the most difficult children. Almost all children they work with have severe behavioral problems have come from extremely abusive families and have been in many failed placements.

In this way they are quite surprised to hear from their social worker, John Fulshaw, about a nine year old girl named Abigail (Abby) who is being placed with them. Abby does not by any means have a history of being abused or neglected and this is her first time in care. Her story is in it’s own way very heartbreaking. Her mother, Sarah, has had had Multiple Sclerosis since Abby was born. Over time as her condition has gotten worse Abby took on more and more responsibility for her care and running of the house. Until at nine years old everything to do with her mother’s care, and caring for herself and the house was on her young shoulders. Abby knew no different as this was her whole life however Casey and everyone working with the case found it shocking that the family was so isolated that they had lived this way for so long with no one finding out.

Abby arrives at Casey’s house very much in distress due to her mother being hospitalized after a neighbor discovered she’d collapsed and had alerted social services. This had brought Sarah’s circumstances into awareness of others which is one thing Sarah did not, that she’d worked her whole life to protect herself and Abby from being separated. As the shock of being in care starts to wear off Casey and her family notice some striking anxiety issues even within the first days. These include pulling her hair out seemingly unaware of it, flicking lights off and on, tapping door frames and being constantly alert to goings on in the house. The first night Casey discovers that Abby can cook and clean and is very particular and worried about things like what the temperature for the heating system is set at, or the temperature for the fried or how many lights are on.

Casey finds this behavior odd but hopes it’s just the anxiety of being in care. Very quickly Casey discovers this is just the tip of the iceberg. As Abby is living separate from Sarah, having her rigid constant routine of caregiving distrupted, Abby displays more and more anxiety and odd symptoms. She’s constantly asking if the hospital staff know how to take care of her mom, that her mom just needs to come home and have Abby take care of her and she’ll be fine. That such a responsibility is on Abby’s mind every minute of the day makes Casey really feel for her and Casey tries to work on giving Abby as many normal childhood experiences as possible and helping her to unlearn some of the huge responsibility she’s been carrying for so long.

This is nowhere near simple. As time goes by it’s very clear that emotionally Abby can not relax and do anything a normal child would. A simple walk in the woods reveals her panic about contracting tetanus from a harmless fall. Being around Casey’s grandchildren shows that Abby can’t even play with other children without constantly and anxiously watching out for them to the point of being overbearing and dominating. The fears around anything health and safety related are constantly overshadowing all activities she does. Meanwhile social services are trying to figure out a plan for Abby’s future with her mother. Things look less and less positive for them as there seem to be no family or friends to help. Along with this her condition continues to get worse with infections and reactions to treatment.

Abby visits her mother and Casey witnesses the matter of fact often unemotional dynamic between them as they are more like caregiver and a sick person rather than mother and child. At home Abby’s anxiety symptoms get worse and worse. The tapping, hand washing, checking light switches and hair pulling escalate until Casey discovers Abby is actually experiencing o obsessive compulsive disorder or OCD. She contacts her family Dr. about this and is given instructions on preventing Abby from acting on the thoughts and performing her rituals, and telling her that these are just thoughts and not reality. She works gently but consistently with Abby on this, but as some behaviors disappear more come up which a psychologist consulted later says is a common response.

Casey has more pressing things to worry about however. As a passing comment from a friend mentioning a possible sister of Sarah’s, which Casey mentions in the heat of an argument launches an unexpected and overwhelming complaint and investigation by social services. Casey’s name is cleared and the relationship patched up by Sarah but the effect is sobering for Casey and her family.

Like in many of Casey’s books there is a surprising good ending. Not fairy tale happy but a workable solution no one expected that allows Abby and her mom to live together and for Abby to get the childhood she was meant to have with her mother safely taken care of. The epilogue tells us Abby is doing well in school two years later enjoying various hobbies, and is part of a young carers support group in which she earned a medal. She also continues to attend counseling for her OCD which is improving.

I loved this book. It shed light on an issue I never even knew about which is a child caring for a family member by themselves. I always assumed if a parent/ relative had a chronic illness they would have things in place to get the care they need and also have care for their children. However I can totally see from readin this story how pride, fear of separation, and desperation can push a parent to feel the only option is to sacrifice her child to the role of caregiver and that this will do a solution as at least they’re together. The mention ofseveral support groups for kids in this same situation brings home that this is a problem more common than one would think. I would totally recommend this book! I welcome comments a about the book or experiences being a young carer of a parent or any themes discussed.

minor meltdown still no word from Margarett Manor central but overall good day

Hey guys.

So today was really ok I guess. At around lunch though I became quite upset. They’re rotating housekeepers and so for some reason no one came to clean the bathroom or vacume the rug. I just noticed this morning because the bathroom smelled. I just got so upset about it and couldn’t put it out of my mind that they didn’t clean in two days and it wasn’t either ofhe two housekeepers usually up here and just couldn’t deal with this. I was anxious and crying. On top of this Jess was also having a rough day and so we reallyouldn’help each other as we were both in a hard place. Je did tell the nurse about the housekeeping not coming s and she said they’d probably be there soon but I was still so upset. Really didn’t want to eat lunch and a part of me really felt like just running out of the dining room because I absolutely hate the noise and chaos and everything in there. But Iid eat something and my ice cream is always a good ending to being down there. When we got back she was cleaning the room which I was so relieved about.

Looking back on it feel kinda stupid for being so upset about something small but sometimes that’s just anxiety for you. In the past I would have sl self harmed to not feel those feelings and just block it. I haven’t had such an emotional outburst in awhile. And I guess it’s good I plowed through it and that I’m living in a place that’s so understanding of ups and downs.

In other news I think we’re getting a really good impression of Margaret Manor central based on the fact I can’t get ahold of anyone. I tried a couple hours apart in the afternoon and it was the same deal with transferinggg to unnamed voicemails. Jess says try one more time and then we’re crossing it off our list. The two wer’e going with next are Sherridan Shores and Central Plaza. So that’s exciting. I like how Jess and I are doing this slowly and taking our time writing out notes and getting any info off websites ETC. It will give us everything we need to make an informed decision.

We’re going out tomorrow to get our haircut finally. Going to Betty and Nick’s family hair care. Just hoping it’s as good as Jonathan claims it is. Taking paratransit so never know how that will go. Just remembering timeless toys and how rough that was. But trying to hope for the best. We’re giving an hour for it plus they’re coming earlier than I thought so that head start hopefully will be good. It’s hard going to a new place and not knowing the people or how loud it will be crowded ETC. That’s stuff that triggers my anxiety. May take an Ativan before heading out the door we’ll see.

Another weird thing on my mind and I obsess over this at random intervals is getting recertified for paratransit. Here in IL you get the service for three years I think or four. And then have to recertify me for the ride. As in bring in supporting documents on why I can’t use paratransit ETC. My caseworker is like you’re blind I don’t understand why you need to do this. But I’m like I know but for some really twisted reason it doesn’t matter to them. I have to prove I can’t use the public transportation. Which a lot has to do with psychiatric issues and also usually a mobility instructor testifies to your ability to do this. It’s so nerve wricking to go through especially as you know it shouldn’t even be a process you should have to go through! I don’t have a blind services caseworker here because the only one here is a bitch. So I don’t know. I don’t know why it comes up every so often but it is scary to think about that I may be left without it and then not able to go anywhere really at all.

Hoping tomorrow will be good with the haircuts and stuff.

my day today a few phone calls nothing much

Hi everyone,

So I had a pretty relaxing Monday. Didn’t sleep as well as I wanted last night I think it was all that good food! And just being hyped up.

So today I took my morning nap right away. In the afternoon started making phone calls. I called Margaret Manor central. As first impressions of just trying to make a call it doesn’t look as organized as the north branch at all. The voicemail boxes don’t even havenames for any of the voicemail boxes. Just says your party can not be reached. So I had no idea where I was transferred to the first time. So I called back. I had asked to talk to someone in social services or admissions. She eventually said I could leave a message with the addminastrator. I was confused and wondering why there weren’t a lot of people that I could have gotten transferred to. The admin wasn’t in either, the same no name mailbox. So I left a message saying what I wanted to know and left my number.

So I’ll keep trying. Am keeping an open mind and just hoping this was a case of a Monday and everyone being very busy.

I called the Waterford where someone Jess knew from her IOP lives. But I guess they no longer serve people with mental illness. So that’s it for that.So I was happy to do that stuff.

I also finally called Red door. Where I went back in 2013 I’m not sure for how long. Just that the terrible social worker at St. Mary’s hospital recommended pet therapy. My caseworker at trilogy actually had to do quite a bit of calling to find a place that was welcoming to a blind person wanting to volunteer to hang out with the cats. Which really bothers me and is just more uneccessary rejection. My case worker couldn’t believe it either. So anyway we finally found Reddoor. It’s so cute! It’s a no kill shelter for all kinds of cats and bunnies. The woman who we worked with was Sue ellen. She was extremely nice. Once I stopped going to trilogy I wasn’t going anymore. And kept forgetting to call them and talk about me coming again. Hoping this will work and Jess and I can have cat time once a month. A lot of the cats need the socializing for being adopted. Sue Ellen showed us some more long term cats that are there for as long as needed and we liked hanging out with them. So I’m happy to get that going as soon as possible.

I saw Edith. We talked about the Melissa thing. She was frustrated but knows it’s my life and my decision. I think she’s figured out by now that though she’s my caseworker I’m extremely stubborn and won’t be moved by anyone unless I want to. I did eventually read the e-mail Melissa had sent back on Sunday. I had gotten it just never actually read it. She said she does do long term work with clients especially those with chronic mental illness. And that she could tell how anxious I was. And that no matter how many meds I’m on if I’m not dealing with the roots of my issues all the feelings are still inside me. Which does make sense. Like how with my self injury I’m right on track with my harm reduction plan haven’t scratched in forever. But still feel like toing it all the time and if it weren’t for the external consequences I would. Jonathan and I when we worked together had been working on the deeper roots of my issues and it was extremely good therapy. Untel he basically screwed up everything by not having firm boundaries.

I appreciated what she had to say. And it gave me something to think about.

So yeah. Anyway kinda tired tonight. It’s after nine and I’m heading to bed. Will write more tomorrow.

decided to not go forward with therapy

Hi again,

So I forget if I’ve posted about my finding a new therapist recently or not. When I knew Jonathan was basically out of the question I had been looking on psychology today. And found a few therapists that caught my attention. I wrote them asking if I could see them for $10 which I know is a ridiculously low fee but it’s all I could pay. And Medicaid doesn’t offer really anything in terms of good therapy. It’s the problem I had before Jonathan jumped into my life with his mandatory therapy. I couldn’t find anyone I felt was good for me, went through a couple interns, and had kinda given up.

So yeah. Anyway I was extremely surprised when this therapist Melissa wrote back. Agreeing to the low fee. She seemed very nice, doing dance therapy, mindfulness, having worked outpatient and inpatient places ETC.

She was great about the low fee. Great about the crazy doctor situation here where you have no idea when the Dr. is gonna be in. Great about me being blind, some therapists really get hung up on that sadly. Just wonderful. Was gonna see her Tuesday.

But I’m just soo overwhelmed by starting a new therapy relationship especially after this one ended so badly and I was so badly let down by someone I thought would really be there for the forseeable future. Just even trusting this new person for one session just is so overwhelming to consider. So I think I’ll just leave it at least for now. I need a break from thinking about therapy. I do have plenty of case managers to talk to if I need it as well as people online and other friends. I feel good about the decision.

Plus Jess and I can use the money meant for the fee and trip fee to get our haircuts which are desperately needed more than any therapy! It can be haircut therapy!

the one year anniversary of Jess and I having a double room!

Hi everyone,

I’m extremely happy today. Today, (well technically tomorrow the 27th) but it was a Sunday so we’re celibrating it today, marks the one year anniversary of Jess and I getting our own double room!

Trigger for talk of SI

Now you’re probably thinking ok you got a double room yeah? But it’s really abig deal. We both were in the observation room to be kept an eye on regarding self injury for months and months. She was there first, and then when I came back from my third hospitalization, second at Albany I asked to be there. The room I had been in for six months was very isolating. The three other roomates I had were probably the best matches they could have come up with at the time I moved in. I could have gotten a lot worse in terms of verbally aggressive women. But they kind of were in their own world. One slept all the time. Another kinda talked to herself paced around, was generally out of it. A third was at a day program and when at home didn’t really talk with anyone. So I kind of was isolated even though I was in a four person room.

So you know the majority like a huge percent of rooms at Albany are three or four person rooms. There are only a very few double rooms, usually reserved for married couples or singles. They use the singles dcarefully. There’s this women with severe schizophrenia that screams at the top of her lungs all day and needs a single.

Anyway so Jess and I really got to know each other in that room. And it was quite a turning point for both of us. I don’t think either of us had that extremely close caring sister like relationship that we gained by being together and sharing with one another. I know I never did. I’ve had a lot of friends who said they were friends and then turned out walking out the door, or it was about feeling sorry f for my disability or just about I don’t know whatever. I was always told I wasn’t a good friend by my parents. I never had the feeling of being an equal in a relationship. I always made friends with people way older than I am. While Jess is 12 years older that’s better than me being 15 andf having an extremely close relationship with someone in their forties!

Anyway so it took a lot of therapy and work emotionally to accept that I’m a good friend and worthy of all the caring and love she gave me from the start unconditionally. It took a while to work out the opposing parts of our personality and ways we clash and use those things to make our relationship stronger. In the end we came out with an extremely solid relationship that’s survived soo many arguments and intense issues. Including dealing with one anothers self injury and hospitilazations.

The staff I didn’t know it at the time were kinda in an uproar when Jess and I first moved into that observation room. Having two people that self injure in the same room really got people upset. They were worried we’d encourage each other somehow or cover for each other doing it or that we’d pull one another down in their treatment. In fact the opposite happened. We worked so hard individually in our treatment after meeting one another and having that support of someone who really gets it and is recovering along with you. We just did so many good things for each other that it became something that the staff were glad they gave a chance. Jonathan was the huge player in making this happen in monitoring everything and telling staff to just chill and see how things play out. That’s literally what he says about a lot of things he’s one for, barring someone actually being in mediate danger, is for having someone’s issues play out under his watchful eye so he can know what he’s dealing with rather than running away from the problem. He’s also extremely creative an out of the box kinda guy. I think he saw something really good in our connection and I’m so glad he went with that despite objections.

Jess and I had a slight problem. The observation room is for anyone who needs to be close to the nurse’s station. Because it’s right across the hall and you have to have the door open. It’s really a protocol thing than anything else. Believe me it’s not like the staff out there are that atentative. But yeah. So we had visitors of roomates in and out filling the one bed left. The third person in the room was extremely sweet and easy to get along with. She did have a thing about talking on her cell in the middle of the night but yeah. Anyway we just couldn’t handle any other roomates. It just didn’t work out. So we realized we were probably the best roomates for each other because we just have so much in common with how we live day to day personality ETC.

So one day Jonathan said he wanted to get us out of that room. I wasn’t sure what he meant. Basically he figured it out with all the staff that he wanted to see how we’d handle being in our own room. We basically were already with that third person often gone. So he found this double room and we moved our stuff in. This was after a lot of meetings.

That was july 27th of last year. I hate physically moving. But once we settled in it was perfect for us. We had our own space nice and quiet perfect atmosphere, decorated how we want complete with home made tactile pictures for me and photos for Jess, and me but I can’t see them. But yeah. We’ve had our ups and downs but we’ve learned from them. And hope we can be in the same room wherever we are for the rest of our lives LOL!

So tonight we got pizza and chocolate chip cookie dessert pizza. So yeah.

book Review: More than you can Chew by Marnelle Tokio

Hi everyone,

So I really enjoyed my latest read! It’s called More than You can Chew. It’s a young adult novel about Marty, a fifteen year old girl at a residential treatment unit for people with eating disorders. Marty is the perfect name for her because she’s like a tomboy with a big mouth! Very blunt and extremely hilarious with a very sarcastic sense of humor that follows her into all interactions trying the patience of all the staff.

Marty arrives at the center after two years of anorexic and bulimic behavior. Her background is from a very lonely family life where her mother is a chronic alcoholic and her father a distant business man. They got divorced when she was five and Marty has had very rocky relationships with both of them. She developed her wicked sense of humor and emotional walls due to these issues as a way to keep people from knowing how she really feels. Because she has the message deeply ingrained in her whole being that all people leave her in the end.

She has a tumultuous relationship with a guy named Zack. It’s unclear whether Zack was abusive to her or not. He did express frustration about having to come to her rescue during the two years of her illness around trying to get her to eat/ not purge and so on.

She also had a best friend named Cherri, however like her boyfriend and family her isolation and defensiveness made the friendship unhealthy.

So comes to Silver Lake institute in June. She ends up staying eight months with a one month break in the middle due to a severe suicide attempt and stay in the psych unit. What makes this book so engaging is Marty’s character and how she tries to stay several steps ahead of the nurse’s, therapist’s, and psychiatrist’s questions/ attempts to get her to open up. She relates the daily events of meals, group therapy, individual therapy, building relationships with other clients, and interactions with her parents with a lot of put on detachment (pretending she doesn’t care when she really does.) Only in her internal dialogue, which is the only way toget any read on how she’s really feeling do we glimpse the level of deep pain and emotions hiden behind the huge façade. She keeps up these defenses using humor and sarcasim. The best relationships she has with staff are with the ones who in a way learn to speak her language, in that they match her in their sense of humor and play her game as a way of building trust with them. In times she truly does want to share more of herself with them as she gives them credit for being able to be on her level which can be quite exhausting at the same time you can see how terrified she is to even admit to herself much less outloud the well of emotions inside.

There are times her vulnerability and caring really shine through. Particularly around an eight year old patient (yes not a typo an actual eight year old girl with an eating disorder). Her name is Lily. Marty arms to her right away and uses her straight to the point and humorous attitude to draw Lily out. A touching scene in the book is when Marty teaches Lily how to swim. In all interactions with this sweet and fragile, both emotionally and physically, child Marty shows her enormous heart and truly caring vulnerable nature hidden behind the jokes and deflections.

It’s no surprise though that as Marty is so busy trying to outsmart all the staff, and warding off any surges of emotion that do come up to overwhelm her she makes very little if any progress. She just is unable to face her issues. Nothing seems to be able to help her to really open up.

So over the Christmas holiday everything with her family comes to a head. Her parents usual dynamics and unhealthy ways of relating to her really hit home, and the tragic loss of Lily breaks Marty’s heart. She makes a severe suicide attempt.

The next month she is in the psych unit. One of those lay there and stare at the ceeling places. She does however write in a journal that her psychiatrist had given her at the beginning of her time at the eating disorder unit. He said to please “talk to the book” since she wouldn’t talk to him. It’s at this time as she’s slowly physically/ emotionally coming back to life that she writes in the journal and is most vulnerable. A very seriousphysical illness puts her face to face with a situation where she desperately needs physical/ emotional help to get through it and can’t use her wits anymore. It’s just an ear infection by the way. But the psych ward staff do a horrible job of even pretending they want to help her, so the nurse that Marty considered the hardest one to deal with goes out of her way to help her. Marty forms a true connection with her and promises to be more honest.

The book really doesn’t go into the time after that. It does but not as much as I would have liked. For example at her first group therapy session after she came back when the nurse said she had to tell the truth when she does the others cry, but some are still extremely angry at her for the suicide attempt. It surely brought up a lot of feelings of their own, and as the nurse pointed out no one even suspected it. Marty was always talking back and acting like she was ahead of the game no one had a clue to what was going on. So when she’s finished no one has anything to say and the group therapists just lets them walk out. This is not at all a realistic description of group therapy I can say that.

It doesn’t go at all into her therapy sessions with her therapist or psychiatrist, who by this point she had built a bond with, however it would have been extremely good to see what she revealed to them about how her eating disorder started and all the feelings that were trapped inside. By the end of the book her father was out of her life as was the boyfriend. She somehow reconnected with Cherri. Her mother finally got it together and the two formed a new tentative connection. This felt realistic to me as I’ve dealt with an alcoholic parent and know the ups and downs of that and what it means to try and start things off fresh. Marty returns to the unit from her psych ward stay at the end of January and left the eating disorder unit on February 9th which is an extremely speedy and unrealistic recovery.

Over all I really did enjoy the book and felt a connection with this blunt on the outside, so caring and vulnerable girl on the inside who is trying so hard to protect herself emotionally that it almost killed her. I didn’t like the ending as I thought it should have explored more of her true recovery after she finally dropped the façade. But it is clear there’s much work that she’ll do emotionally as well as her mom in order to maintain her recovery which is true to any mental illness. As I said I’d recommend this book. I’d love to hear comments from anyone who has dealt with an eating disorder, or experienced something similar as in residential treatment. Or just anyone that can identify with Marty’s personality of trying to hide behind a detached sense of humor. I’ve done this plenty of times. It takes work on both our parts for me to really connect deeply with a therapist or other professional.

I look forward to what people have to say.

my visit to Margaret manor

Hi everyone,

I’m so happy to report on my visit to Margaret Manor today. Jess and I had a great experience house hunting. Well facility hunting LOL!

There really isn’t much info on it beside the site that’s the company that oversees a few of these places but here’s the link.

http://www.madohealthcare.com/mmn/

So it’s in a pretty good neighborhood. Pritty near rigly field so kind of traffic city. There’s a really narrow road right where it is so not good at all for parking. There are stores in walking distance like subway and target.

We walked through the extremely small entrance way into a very small but quiet lobby. The front desk person asked if we were for our tour and we said yes. We sat in fake leather armchairs a nice change from the hard benches we have in our lobby.

The first thing I noticed was I didn’t smell cigarette smoke! And there weren’t a million people going in and out the front door at once.

I thought John the interium clinical director I’d talked to on the phone would do our tour. But a very nice woman named Mattie came over. She’s one of the main social workers. She sat down with us right there and we started talking. We learned that they have 99 beds and are at 89 now. With no women spots available. Which is fine as we’re nowhere near even thinking about really leaving.

She said they have three main social workers. Plus her boss who has seven on his caseload. . The rest have thirty like here. Why they didn’t just hire a few more social workers so they could have smaller caseloads is beyond me. The social workers for the daytime come in at eight and leave at six. They have people called behavioral health specialests that are there for the evenings til 11:30 at night! I was impressed about that as here they leave at nine. The BHS do the individual and group therapy. It’s mandatory to either have individual therapy with them or groups. I assume you could see an outside therapist if needed.

They have a lot of groups similar to here coping skills, sobustance abuse, self control (for people with anger or self harm issues), women’s group men’s group ETC. They have activity groups like games, exercise, arts and crafts ETC. They do go on outings to the local stores to the beach ETC.

There are three floors to the whole building. On the first floor is the lobby activity room, “party room” which is another activity room. Dining room offices for social workers, group room, and nurse’s station. This by the way is the main nurse’s station the only place you can get meds. The two floors with rooms on them are split into men and women. Which actually makes me feel a little safer to have it like that. There are nurse’s stations on each floor but again for some weird reason they don’t hand out meds there. Even though it’s a floor down it’s just a pain to have to get your meds that way. She did say that they don’t remind you about meds like here. Which is no big deal for Jess and I but made me laugh thinking about the huge amount of people who practically need to be physically escorted and majorly bribed with cigarettes and pop to get their meds!

Meals are in the dining room you line up with your tray and get your food and sit down. Mattie I am so relieved was super good about my blindness. She asked what my needs were. I told her about how I sit down and someone gets my food at meals, they have a whole category of residents that do this. As well as with meds I don’t stand in line there’s just too much of a chance of people knocking into me. Plus crowds really raise my anxiety majorly. She was understanding about that and said I could come 15 minutes early for meals and meds.

I did also say that given it’s so quiet and so much smaller area wise than here I could probably use the cane more than I do here. However the hallways are so narrow that Jess and I couldn’t walk side by side. So me and the cane would take up the space so don’t know how well that would go! I did say I could get an o/m instructor to help with this hopefully.

She said there are three two and one person rooms. We think the doors lock. I would hope they do. She kinda peaked into the doors of a couple rooms and could just open them without a key. But she mentioned something about a key for a locker each of us would get but I also thought that meant the room key but yeah. Really emphasized that if we lose something it’s not their responsibility. It seems like they’re a lot firmer about certain things in personal responsibility which I think is really healthy.

I was laughing because in their groups they even have one about teaching people how to wash their hair/ brush their teeth ETC. Obveously we don’t need help with that but a huge amount of residents here do big time. I might recommend it.

The one thing that really gets us then is their thing with laundry. For some reason we can’t do our own laundry. Staff does it. They say they put your name in all your clothes. Still I’ve been in similar situations like camp or centers for the blind and stuff gets lost. Jess lived at another place where the same thing happened and stuff was lost or damaged. I just think it’s the weirdest thing that they’re so firm on taking responsibility for meals meds, your stuff but you can’t do your own laundry.

They do have wi/fi. Wouldn’t move anywhere without it that’s for sure!!

I’m trying to think I think that’s all of it except I saved the best for last!

They have two cats! Yes cats at a residential facility I was soo happy and surprised! I wanted something like that for here or friedman and people were like no it could never happen but it has! Their names areShadow and Patches. They live in cat condos in the lobby or in the social worker office so it’s kind of out of the way I suppose for people that are allergic. It’s all very clean. Something along the same lines is they have a work program where you could get up to a hundred dollars for a job depending on the job! And one job is taking care of the cats. We couldn’t find Shadow. Which is sad as she said he’s like a dog he’s so friendly. But Patches didn’t mind the petting though he slept the whole time. I was absolutely thrilled. I haven’t hung out with a cat in over a year. Since I went to reddoor for my cat therapy with my trilogy caseworker.

So it was overall a very good day. The big cons are the you can’t do your laundry thing, the meds on the first floor thing and some other things I can’t remember. We wrote out all questions positive and negative reactions ETC.

Margaret manor has a central branch and we’re gonna look there next while this one is fresh in our minds to compare. So I’m really happy. I was really relieved about how accepting she was about my blindness and just the atmosphere over all. And the cats especially! If anyone happens to be from Margaret Manor and sees this feel free to comment! I did run into a couple residents that were clients from t last IOP I went to which was nice. Now I’m really tired and need chillax time.

guest post by Robert Kingett: Exploring therapy

Hi everyone,

I have a special addition to my blog tonight. I have two very best friends. One is Jessica Wilis. She lives with me and is a big sister to me. The other is Robert Kingett. We met in 2012 when he moved all the way from FL to Chicago to be there. He is like my little brother, only by a year! He is passionate loving vulnerable empathetic and will do anything he can for his friends. He’s extremely loyal and giving of his time skills talents and just himself.

You know how some girls say their best guy friends are gay? Well that’s true too! Anyway Robert knows a whole lot about the world of technology, gay dating/ issues, motivational speaking, and of course cookies! He admits to not knowing a whole lot about the world of mental health treatment and psychology. If you’re friends with me, or just pass by me online you’ll get quite an education! So he now knows a lot about the ins and outs of my particularl passion. As I’ve gotten more treatment and my illness has gotten more severe he’s learned more and is extremely understanding supportive and always there.

I’m so so proud of him for what he’s done expressed in the post below. I also have PTSD from child abuse. And hypervigilance is indeed a hard skill!

Please read carefully. Know that you’re invited into the world of someone’s most vulnerable place at their initial therapy session of their whole life and I know so many in recovery or who have experienced therapy of any kind can empathize with that. Robbie I love you more than all the chocolate men out there!!

Some names have been changed to protect privacy.

I am sitting in a social workers office without any inkling of what I am in for. I know why I am here, I am here for my first therapy session, with someone who is a qualified social worker. I don’t know what I will tell him or even what I will say. All I know is that I will say quite a bit of things I’ve never wanted to tell people.

People think that troops in the military have to fight the ultimate battle, that they face the worst kind of horrors in human history. I hear stories all the time because I live with a vet who recites a novel to me when he visits me, but I can honestly say that it takes a whole new level of courage to open up.

When other people talk of therapy, and when people mix up the terms like psychologist and psychiatrist, it comes out as if it’s a finality. You will go to therapy to get fixed, to mend those broken shards inside of you. that’s what a therapist does, many people will assert, that they are on this earth to fix you.

I am wondering, exactly, just how I will be fixed when I start talking. Books and movies tell me that I am supposed to be told by the professional how I should feel and why I should feel the way that I feel, so I am extremely nervous, because I’ve never opened up to a professional. I can spill my diary to an online journal, as if I am in a circle of a gossip primps, but telling a professional how I feel is utterly foreign to me.

Chris comes into the office and sits down, opposite from me. He’s very calm, whereas I am not. I don’t know how this works. I don’t know where to begin. I don’t know how to feel. I don’t know how to stop believing the incorrect portrayals of therapy from TV and books. I really want to have some chocolate because chocolate, of any size, makes everything and anything better.

“So,” Chris says, thank you for coming in!”

“Thank you for having me! I’m just going to be frank, because, well, I don’t know where to begin, but I want to tell you about a feeling I am having regarding, well, all of this stuff that’s been happening these past few days.” Chris leans forward, immediately intent on what I have to say, and I begin, not even sure where this will lead.

When your a survivor of a kind of abuse, it allows you to be very insightful. We have to be. We have to learn to develop this hard skill set so we can predict the level of abuse we will get whenever it happens to us. It isn’t something we would put on our resume but it can serve us well in a number of situations. Whenever my moms moods would shift, and I would be the victim again, no matter what time of the day or night she chose to be the hero of the beer bottle, it as created this wall inside of me where I hide and watch from. I judge people behind this wall, and the reactions this person may have.

Because I’ve been beaten cursed at, cut, burnt, scratched, screaming into the night as I become a flimsy punching bag, I’ve learned to try and predict how others will react to what I say and or do. Most of the time, I am right. Today, I am so nervous, that my ESP is slightly off and my nerves are straining to be rational. To top it off, I don’t know where to begin. I don’t know what I need to clear up first.

I start off by telling him something very personal.

“There’s a resident here,” I begin, and he leans in even closer, his silent eyes locked on my face like a vice. “And, well, I want to tell you something.”

“I’M here to listen.” he urges as I lean in closer, my hands twitching on the table. Being a rape victim has also taught me to try and judge people, and how they will react. My feelings try and clog my mind up, but I take a deep breath as my fingers continue to twist around one another and begin.

“Well, there’s this resident who I love, but it’s not a gay love or whatever. It’s a father kind of love. His name is john. Do you know John?” he nods, so I continue. I’ve never seen him this intense.

“I feel like I shouldn’t have these feelings, like I am too old to have these feelings for someone who isn’t even gay, and someone who is triple times my age. See, this is how it all started, really.

One day, my eye was really hurting, bleeding, in fact, and I called him because I was very scared and I didn’t know what else to do, because the CNA’s didn’t answer the emergency call right away. When he arrived to look after me and comfort me, and make sure I am OK, he told me something I will never forget. He told me that I was like a son to him. I’ve never had a mom. I’ve never had a home, I’ve never had a dad. What’s a home, anyway? Is it a place where people go and the owners HAVE to take you in? He struck a cord inside of me, so now I want to show him my accomplishments, get advice from him, even though I know it’s not always going to be good advice. I want to have him say he’s proud of me… and, well, I do like his company. Outside of certain things like the Resident Board, he’s a really nice guy. We don’t agree on everything, but now I just want to have what I’ve never had.

Like, the other day, when another resident heard that I was going to go to a restaurant with him, this other resident asked if he could go too, when it was supposed to be like a fathers day special. He even told John that I just wanted to go out to have a free dinner. Also, I keep doing this thing, when I am in trouble, I apologize for calling people for help.:

We speculate about some of the feelings I have and why I feel the way that I feel. He tells me that my father need isn’t wrong at all. That I am free to need whatever I want to need. He explains it as if it were just something I had been lacking, love, in any form. He then told me a LOT about himself.

I listen as he explains about him and his brothers. Being Latino, he grew up in a part of Chicago that’s usually seen as the ghetto. I listen to him describe him and his brothers. Before I know it, I realize something about myself and why I am here, and, what I am doing.

“in John’s case,” Chris says, “have you ever considered that you may be helping him just as much as he’s helping you?” this genuinely shocks me. I shake my head, and he leans in closer, speaking with an even softer tone, as if I am made of glass and will shatter if he speaks above a certain octive.

“Sometimes, when people get old, their kids abandon them. They dump their elders here and think, I don’t have to see them again. Sure, they still love him, but, grandpa is old. He’s blind. He’s in this place. We don’t have to pay as much attention. Then, ere you come, this survivor, who’s just brimming with love to give. Even though he may not say it, you are healing him, slowly.

Military types learn to hide their emotions, which is not healthy. You are changing him for the better, because you have so much love to give, it is refreshing, and something he needs to explore. He may not understand why you feel so strongly about spending time with him, and the like, but he needs to do some exploring and opening up of his own.”

We talk for a good while more, with me telling him everything. About how, even now, sometimes I worry how people will react if I say something. Sometimes, I avoid doing something because I think that the person will get mad at me. When I hear shouting, I want to hide in a corner and sink to the floor and curl up in a ball.

“I think it’s telling that you feel sorry for asking people to help you.” he says.

“Yeah,” I hedge, I don’t know what I want to say next so I blurt out, I don’t know why.

He tells me that he thinks that, deep down, I need to hear some validation that people really do want to help me for who I am. I don’t understand what he’s saying at all, so I ask him even more questions, and realize what I am doing.

I am not fixing myself. That part is clear. I am exploring my feelings and thoughts along with him. My new kind of therapist. sure, I’ve explored these thoughts and feelings before inside of my head but it’s very different when you explore them out loud. It’s almost as if you are telling someone that you don’t have the answers and they say, OK, let’s figure this out together.

People say the first step in therapy is to accept. I don’t know what step I am even taking, but I believe this exploration is helping me more than I am aware. I feel like I can think about things and I feel much better because I know I’ve thought about them. While I didn’t get an answer, I feel as if I am closer to something. I don’t know what that is quite yet, but I do know that I have to think about a lot of things before the next meeting.

Before I know it, two hours have passed and I have to head to dinner. With each step I take to the dining room, I explore what I am thinking at this minute. The first is that TV gets it wrong. The second is, anyone who says therapy is supposed to outright fix you, well, obviously, that’s just as slippery as a banana. People take steps to get where they want to go. I can’t speak for others, but I’ve started taking my steps. It’s OK if you want to take yours. Trust me, it really does feel good.