Book Review: Beside Myself by Ann Morgan

This book explores themes of identity, deception, and mental illness in a gripping intricate way.

At six years old twins Helen and Ellie can’t be more different. Helen is always praised for her schoolwork, helpfulness at home, has many friends. She’s also in the role of looking out for Ellie who is a slow learner with possible brain damage from birth trauma. She is emotional and a step or two behind on everything. Helen enjoys “teaching Ellie lessons” which usually envolves some kind of prank or cruelty.

One day when out playing Helen decides to surprise their mother by having she and Ellie switch places just for the day.

At first it takes Ellie a bit to understand the game. But when it works out well with someone in the town who knows them they go home to do it with their mother. Only to find her new boyfriend moving in. Helen is so shocked that she doesn’t say anything about the switch and of course seeing the clothing and hairstyles their mother never suspects anything.

Helen wants the game to be over but Ellie feeling what it’s like to be in a leadership/ more powerful role does not want to switch back.

No matter how many times Helin tries to tell people she’s not Ellie no one believes her and everyone treats her as Ellie. To the point where years later she doubts that the switch really happened.

The book shifts between the past starting with the game and the present. In the present Helen is confronted with the fact that her sister has been in a car accident and is in a coma. This puts her face to face with all the people from her past that pushed her over the edge where she is now, in a disgusting apartment with no money or food and thrown around by the wims of her bipolar disorder and psychosis.

While Ellie as Helen (or as Helen puts it Hellie, a kind of warpe version of how Helen sees herself) grew up to be a TV star. But her life has not been free from hardship as she too has bipolar disorder.

As Helen navigates this present situation she faces her past childhood issues including sexual abuse, drinking and drug use, and broken relationships.

By the end of the book she has made peace with her sister, has finally let go of her family and their hold on her and is forming a life for herself.

The book portrays so well the feel of bipolar disorder, the highs where everything seems possible and the lows where just being awake is painful. The taunts of her psychotic voices are also realistic.

Though the whole people switching places and no one knowing is unrealistic, everything else is so true to form that this is soon forgotten as the switch itself was.

I highly recommend this book. Listened to the audible version.

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Now I know how sighted people feel with a blindfold on, wearing super good headphones

Have wanted to write this for awhile but don’t want to offend anyone.

So my headphones I got for Christmas somehow magically broke. Wouldn’t have anything to do with me throwing them and my player off my bed every night when I’m half asleep or shoving them places.

So it was right at the bed bug time and I asked for headphones because the first thing I got back was my ipod. And Jonathan had these really good new headphones.

These headphones are like ya know when you go to a store that sells CDS or whatever, and the headphones are like really good. With this heavy duty foam material and like almost cups over your whole ears? That’s what that’s like. Plus in the ear part they also have a layer of the regular spongy foam normal headphones have. Plus they have a remote control that adjusts volume and what side the sound comes out.

So this is the part where I don’t want to offend anyone. I don’t want to say I have hearing loss when I wear them, but it does affect your hearing. I don’t mean having stuff up loud. I mean actually just wearing them. Everything is muffled which is kinda nice. The next time there’s a fire alarm I want to grab them on the way to the dayroom and see if it makes a difference to my anxiety.

But like Jess will talk to me when they’re on and sometimes I don’t even know she’s talking. Or I hear her and I get like the last word of the sentence or something. Sometimes because I don’t want to take them off I’ll just try to answer her based on whatever I heard and it’s really funny. Because what she said and what I heard are like totally different.

It’s interesting. I’ve never had that experience with hearing before. There was this show called A Walk in your Shoes where they had this guy put on these headphones that simulated being deaf and he lived with another deaf kid and his family for a week or something!

They did the same thing with a blind person, people from different countries, religions ETC. I wish it was still on or on youtube.

Win for accessible digital media project: Switched at Birth now completely audio described on netflicks!

So yeah! Was so completely thrilled to find this out today!

Robert Kingette and I, and the rest of the group have worked so hard and connected with some very awesome people to slowly make this happen.

I’m just beyond grateful. This is gonna open up a whole new audience to what is already a ground breaking show for people with a variety of disabilities.

But mostly as I’ve said time and time again, I feel it could be a good bridge between deaf and blind people, whether deafblind or blind hearing. We have more in common than you think even though that probably sounds really clechai. So yeah like I said I can’t write the huge smile on my face right now I’m just like beyond woreds!

Book Review: Hurt go Happy by Ginny Rorby

I think this is one of my favorite books.

Joey is 13 years old. She lost her hearing at six under tragic circumstances. She does not know sign language beyond the alphabet, and a couple words, she knows the sign for deaf, but that’s about it.

The reason she doesn’t know is that her mother insists that her deafness will be less noticeable and that she’ll “be normal” if she reads lips. Her mother doesn’t understand how imposible this is at times, and Joey shows us through broken dialogue, and relationships that she can not even directly communicate in how cut off she is.

She’s doing terribly in school due to having trouble with the work, and understanding what’s being taught. Hearing aids don’t help very much.

She has one friend Roxie who’s mother is deaf and who taught her a few more signs. But she always had to not use them around her mom.

Joey’s life changes forever when she goes mushroom picking, one thing she and her mother have in common. She ends up on Charlie Mansel’s property. After trying to angrily drive her away he realizes she’s deaf. It turns out both his parents were too. One was in a family that incouraged ASL and the other lip reading and oral speech. He strongly feels that learning to sign opens up possibilities and connections that a deaf person would not have otherwise.

The biggest surprise is meeting Sukari a chimpanzee that Charlie and his wife got from Africa when doing vet work over there.

Sukari is very much like a young child and can sign very well. Joey is won over by this human like animal. She feels like she can totally be herself in Charley’s presence and feels her life start to blossom with connections as her ability to sign increases. The relationship so detailed between she and sukari is magical. Sukari wears clothes sleeps in her own room, is poty trained and many other human like things.

The conflict around Joey signing gets more heated as her mother learns about Charlie and Sukari. As Charlie becomes more frail and ill he confronts her mother about the reasons why she wouldn’t let Joey sign. This flashes her back to the trauma that ended her daughter’s hearing loss and forces her to face the painful reality of how she held her daughter back.

In the months after this confrontation Joey’s relationship with Sukari charlee and signing grows stronger. Her mother softens and enrolls her in a summer ASL course but even then is not thrilled by the idea.

When Tragedy strikes Charlie and Sukari her fate is in Joey’s hands. Tragically she does not come to find that information until Sukari has been placed in traumatic circumstances. Joey takes control of her life and her friend’s and does everything possible to get her to a safe place.

The determination and people she meets along the way bring out more and more of her personality and feeling of being the center of her life and not allowing her mother, who she’s relied on but who has also held her back, to decide for her. For a 14 year old she has depth and maturity that is rare and yet very believeable.

We learn things about Ruth as well that give us insight into her whole personality and inner pain.

Another huge thing that I liked was the description of many signs. This book made me really want to learn ASL and get a signing chimp!

The book covers such a variety of issues. Deafness, the debate between lip reading/ oral communication and ASL. Animal rights. The life of chimpanzies. And so much more.

Would love to hear people’s thoughts on this book.

ICarol crisisline software and accessibility

Hi everyone,

Wanted to let you know about my new project which is actually quite easy.

As you know I connected with national runaway safeline in 2016 around the possibility of volunteering. We only got to have one meeting before deciding that at the moment it wasn’t the right time. I’ve happily done some other volunteering. I am thinking of trying again to reconnect as the invitation was open for me to do so in a year.

Looking back at my notes, the site that they use to manage their whole system, shift scheduling, call logs ETC is called iCarol.

http://www.icarol.com/

So you would log into that site and have access to everything you’d need as a volunteer and staff manage everything they need from there as well.

I only had an hour to play with the site when I went over to NRS. I noticed a couple accessibility issues but obviously don’t remember everything. This weekend I learned more about just how popular this software/site is.

Here is a testimonials page where you can see many well known hotlines and services use this website

http://www.icarol.com/client-testimonials/

So basically if you want to volunteer somewhere chances are you’re gonna run into this site!

Which is why it’s extremely important that it be fully accessible to those with all disabilities. The organizations that use the software don’t have control over this, they don’t actually build the site so we need to go right to the source. So what would be great is if everyone, whether you volunteer on hotlines or not could just write a wuick note to this address

support@iCarol.com

Just saying how important it is that the website be compatible with screen readers so volunteers and staff who are blind and visually impaired can use all the features. They wrote a very short statement in 2013 saying they were making “the best parts” of I carol accessible. I’m hoping in four years they’ve continued to do this. It’s gonna take as many voices as possible to keep on them about it.

Better yet, if you’re reading this and know all about assistive technology and accessibility and can write them from that perspective and connect in that way that would be great. I know it’s really hard to get jobs in that area if you’re free lance and maybe you could work with them. Maybe they’d pay you I don’t know. But it’s worth a shot. If they’re as open to doing this as they say they are they’ll at the very least appreciate the feedback and offer of your skills.

I’m hoping we can be successful with this because clearly it’s impressive software if so many people are on board. Thank you for helping with this.

hiarcuts and subway

Today was very productive. It was sunny and cool out. Jess and I went to Betty and Nicks for our haircuts as usual. Only $5 each highly recommend!

Of course that took about a half hour of the hour and a half time we were stuck there. So we walked to subway crossed a busy intersection and both survived, and got subway. It was great to not have to deal with dinner as in going down there.

Had some upset stomach later after my bath which I took right away to get the little hairs off my neck, and a nap so who knows. They had this really gross turkey for lunch so that was probably it.

But anyway I’ve had a mostly chillaxing afternoon other than that.

book review: Tiney Prisoners by Maggie Hartley

I just finished reading another memoir by Maggie Hartley. This is about her fostering journey with two very young siblings.

Two year old Evie and three year old Elliot come into care after a neighbor finds them terribly neglected and starving.

When they appear on Maggie’s doorstep they are more like animals than children so incredibly terrified of the world around them.

At the time Maggie had several other children with her, Tess and Sam who she was fostering long term. Sam has developmental disabilities, vision and hearing loss. And Pete her biological son.

These children become role models for Evie and Eliot as they learn how to engage in life. Evie is very clingy and is either hanging on Tess or Maggie. She uses words like bitch in every day conversation as that’s how parents talked at home. That quickly drops off as Maggie and the family model appropriate ways of talking.

These children had no idea what a washer was, why you would wash clothes. What different foods were, or how to play. They’d just sit there and stare at toys and at Maggie and the other kids when they engaged in play. It was months before they were able to actually play like any other child.

Maggie worked very systematically on different goals with the kids. Getting them to eat, engage in every day activities around the house. Then slowly to be ok in the car, walking outside, with others around ETC.

She was gentle but persistent that these kids would engage with life and slowly dissolve their fears.

They had obstacles put in place by social services of all things. The social worker Karen was someone who seemed to go by the book and not care about the kids at all. She insisted on contact with the children’s mentally ill and a drug and alcohol dependent mother. Even though she barely showed up for contact. When she or a taxi tried to take the children they wouldn’t allow Maggie in to the room. The children then went into meltdown mode and were inconsolable.

It was no wonder that every time the doorbell rang the children would run and hide behind the heater and it would take hours to get them calm again. Every time the doorbell rang in the past it was likely a social worker coming to take them away, or the police.

Maggie fortunately had a great supervising social worker named Simon who was totally in favor of Maggie’s approach with the kids. He eventually worked to stop contact as there was no point and clearly the mother was doing nothing to work towards getting her kids back. It was at the last contact, which Maggie and Simon attended and the kids somehow made it through, that it was clear that the mother treated Evie like a doll and totally ignored Eliot.

The children’s father was in prison. It shocks me that Maggie was not allowed to take the kids to visits with the mom at social services but was expected to take the kids to visit their father in prison. At the first visit their father was in a “open prison” which I’ve never heard of. And so things were more relaxed. Eliot clearly had bonded with his Dad and had a few positive memories. Evie wanted nothing to do with him but managed to hold out ok during the visit. By this time Maggie had established a good way of getting the kids out and doing things is to carefully explain what’s going on and to make the focus something she knows they like. Like taking them to the store but having it be about shopping for favorite slippers. Or visiting their dad but having the focus be feeding the ducks at a park. This allowed them to get through their fears enough to do something enjoyable.

At the point it was decided that the children would be put on track for adoption they went to say goodbye to their father. This time due to violent incidents he was in a more hard core prison. What we think of as prison. All locked doors and huge visiting room. Maggie even had trouble there getting into a real panic while trying to keep the kids calm. The prison had kindly found a small office for them but it was way into the building. It was amazing that the kids got through that visit. And sad for Maggie to see their father break down about losing his kids.

After that things moved to getting the kids ready for adoption. They first though needed to get used to being apart from Maggie. She took great care to find preschools each tailored to the individual child’s needs for the kids. At some points she was more anxious than them but it ended up being really positive and they gained so much from it.

They were able to do some play therapy with a really good therapist named Anna. It was nice to see therapy take place before a child was placed in long term/ adoptive care. Anna was then able to write up her reports on the children’s issues and what would be best for the kind of placement they needed.

Karen rather insensitively said a month or so into the placement that the kids were “unadoptable.” Due to their emotional issues. Maggie couldn’t believe this, nor anyone else. It was through Maggie and other’s persistence and unconditional support that both kids were able to be placed in a really good adoptive family.

I was really really impressed with Maggie in this book. She really knew how to work with deeply traumatized kids. I was also impressed with the children’s ability to take in the nurturing and structure and shed their fears and attachment issues in a relatively small space of time. Sadly this is often not the case. Foster parents get kids and are totally unprepared for the types of issues they have coming through the door. So they just don’t know what to do. And they don’t have the kind of help from social services that Maggie had with Simon and Anna. I highly recommend this book. It models how to help children in a connected healthy way heal from trauma.

Good day caught up with Callie old caseworker and had a walk after dinner

Today was really good. Had a long chat with Callie. She was my second caseworker and left in 2014. She’s now the ombudsman assistant. She really likes going to different facilities and checking things out. She worked at a skilled/psych facility for a year or so she also liked that.

A couple of former PRCS now work over there and she had news about a few others that had worked here when she was there.

She actually hears the big gossip because I guess PRCS are pretty connected so like she knew about Ms. Billy passing away and stuff.

Anyway we talked about moving to a smaller SMHRF. She has heard good things about Margarett Manor north. Which we already know. Doesn’t really know of many of the facilities in Chicago.

But is in support of us doing what’s best for us and impressed with how well we’re doing. So that was an afternoon affair.

Then went downstairs and sadly no Jonathan session. He was in a meeting. Sigh. Wanted to especially talk to him about burnt out Anna and other stuff. But yeah hopefully next week.

Other good thing was went for a walk with Jess to Maine foods. We got oatmeal for me we usually get it at walmart but will be going next week and also got a bunch of snacks plus ice cream bar. It was nice to get some fresh air.

dentist appointment two fillings

Hey everyone,

So even though for some reason Jess and I couldn’t get to sleep til one in the morning and it was another miserable rainy day out we were determined not to keep rescheduling this appointment and just get it over with. Of course paratransit took it’s sweet time getting here and picking us up from the office. And I was starting to get frustrated and if I hadn’t had an ativan in me I would have been like last Thursday. But I was ok.

She was very impressed with my gums. There was the chip in my molar that I thought she’d just smooth down. But I guess she decided to fill it. Back when I went a few weeks ago my gums were so swollen she really couldn’t see how the teeth were so that probably had a lot to do with it.

But then she did another filling on the other side of my mouth. So I had a cavity there too that I had no idea about. I hate the noise of the thing she uses to clean it out before filling it’s high pitched and you can smell the smoke or whatever from it running and it’s just like OMG!

So then we go wait. And I guess it’s been awhile well a year I think since I got fillings. So I’m not used to how they first feel. Which is like your mouth has plaster in it or something! Reminds me of the stuff they used to make molds of my teeth for braces. So that was just plain irritating. So basically I was being my Sammy self and licking it, biting it, touching it pieces were coming off. So finally got ahold of the ride that said they were coming and I was like really anxious I was afraid this whole filling thing would like come out. By this time she’d already seen some patients and stuff. So yeah she went back in and I guess touched it up. Used the high pitched machine thing put filling again said please don’t eat or drink for an hour. And Jess is like please don’t pick, lick, bite or play with it!

After all that we got home at dinnertime here, so we just decided to order out. So that was yummylicious. My teeth still feel kinda weird especially on the side of that surprise one. So now I have four fillings all on the lower part of my mouth. I’m so anxious on it. Dr. Anderson was laughing with Jess about how I kept asking how many cavities I had. She was like now none! Then I realized I needed to ask how many fillings which I asked like six times and then she answered right. At first she was just counting the two from today. But anyway Jess was like, trust me you need to answer her question she’ll be bugging me til we come back about it!

So now I’m home and have eaten and my teeth still feels weird but hopefully will be good by tomorrow. It doesn’t hurt and that thing she used before filling didn’t hurt it just felt weird like my teeth were being zapped or something. But yeah she’s good. What dentist would do her thing go see other people and then take me back and redo it?

We made my next appointment for September 25.

This really makes me not want to move out of Chicago. I don’t want to lose this dentist and the more fillings I get, without even knowing there’s a problem the more I feel I need to go exactly every six months.

Part of me wants to be living someplace else by September. But then I’m like no way, I don’t know. I think a vacation would solve a lot of this just wanting a change of scene.

But that’s not gonna happen. The one way I can think of to actually save up money would be going to supportive living. So yeah.

Will hopefully be talking with Mr. J tomorrow on all this.

Book Review: Last Night I sang to the monster by Benjamin Alire Saenz

I just finished reading a very emotional and beautifully written young adult novel.

Zack is 18 years old. He finds himself in a rehabilitation facility with no memory of how he got there or to the hospital before he was transferred. He has a Therapist Adam. Adam is extremely patient, emotionally connected to his clients, is comfortable with using appropriate physical touch and really brings himself to the relationships in a very human genuine way. He really reminds me of Jonathan.

He encourages Zack to remember what happened. But Zack wants to just shut everything out. A lot of the book is Zack’s inner thoughts and feelings which are expressed quite well and sometimes humorous but also deeply emotional. You really feel like you could meet him on the street and recognize him.

Zack grew up with an alcoholic father, very depressed and anxious mother, and abusive brother. He was always facing physical, emotional, and a couple of instances of sexual abuse. He dealt with these issues through dissociating, drinking and doing drugs.

He talked about a teacher who had concerns for him and how just hearing that the teacher thought he was amazing threw him into an anxiety attack.

He had friends but they mostly just did drugs and drank.

As the story goes on he talks about the program itself. It seems like people can come and stay til they’re done. Don’t know how much it costs. Very holistic place. The therapists all seem like Adam very relational and genuine. A big part of the program is group. There are several different tracks for clients. Zack is in the trauma group. There are sex and love addiction groups, eating disorder, and as he puts it “for people who have more than one person living inside their head..” So DID is referenced while not in a totally articulate, at least in a not negative way.

So a big part of the program is group. In group people tell their stories what their life was like leading up to coming to treatment. Adam writes stuff on the board that they discuss. There’s process stuff going on people giving each other feedback.

Adam has a way of letting people know his thoughts without forcing them on the person. He says “I’m making up that…” so in this way he’s saying he could be wrong, but this is his thought on the situation. Like he could say “I’m making up that you’re really angry at me right now.” I like that way of interacting.

Zack has two roommates Raphial and Sharky. Raphail Is 53 and an alcoholic. He is wise and caring. When Zack has extremely vivid nightmares he will sit and comfort him. Zack does a lot of good work in therapy around his feelings for Raphael. He realizes he loves him and that’s ok which is huge for him.

All throughout the book the metaphor of “the monster” is used and is a core theme. The monster being things like abuse, not wanting to remember, things that happen whenadiction took over, ETC. He would often talk about wishing the monster would just kill him and get it over with, and slowly realizing he has ways to push the monster out of his head though it will always be there.

He finds these ways in writing, painting, being in nature, therapy with Adam, and breath work. I was like OMG when I heard they did breathwork! That camp I went to, that I talked about awhile back they do breathwork. Zack was as skeptical as I was before he did it. But Adam thought it would really help him release trauma stored in his body and help with his overwhelming anxiety. And it did. He really found it helpful. The therapist was a wise older woman named Susan and very kind.

When Zack finally confronts what brought him there it is the most disturbing shocking thing you can imagine happening. Finally facing it is what brings him the most relief.

I believe the treatment facility is true to form of what treatment centers might be like. This place is very woodsy people live in Cabins and stuff. And I’m impressed with the relational style of the therapists, their ability to reach out with a hug or holding the person’s hands if ok.

The ending for Zack is very positive though he likely has a long road head. And the monster will always be there but he knows now how to deal with it.

The narrator of the book was extremely good. Had such emotion in his voice it was incredible.

I highly recommend this book. Though the content would likely be extremely triggering around abuse, addiction, and PTSD.