new room on two not so bad and first foster Kitty coming wednesday

Hey everyone,

So the move down to two was crazy. Just so much with packing things up in what we thought was an organized way but really wasn’t. Big scares about certain bags like one with my computer not being there. Good thing staff still had keys to our rooms after we turned ours in as housekeeping forgot some stuff.

But that’s understandable. They were amazing and easygoing about moving furniture from floor to floor and huge carts of all our stuff.

Just took awhile of both of us frustrated and hungry sorting out stuff between both our rooms.

My bed and sensory corner were set up first. And feel the best. The mattress I think is even softer than the one in my old room!

Slept well last night.

One thing about this room is that the phone, used to call staff/ nurse’s station is totally broken. Guess nothing happens when you pick it up. However it somehow manages to call the nurse’s station every ten minutes straight! For like two weeks.

So since I don’t have a phone I was given a wave radio like the staff have. Really don’t like it as I can hear people talking on it and it screeches and has static at certain times. It’s not all the time in fact was only happening tonight.

Was gonna just give it back to them but they insisted I have something for emergencies.

Really got to talk with this really good RSA Pam. She’s been here for years. She’s like Patt but not pouring out her lifestory and feelings to us. That’s a relief!

She said that horrible guy G will be punished if he does anything like what he said to me. He’s not allowed on any floors for his behavior. They seem to have a good handle on it. Which is such a relief!

Other than that. Best News. Jess was contacted and agreed to take her first Kitty. A three year old female who is being tested for adult Lukemia. He’ll be with us two months. Which is awhile! I thought only a week or two. Some friends were worried about us getting attached and I didn’t think anything of it because thought it would be very short placement. But we know it’s just temporary. We’ll put as much love on her as possible. It will be a rollercoaster ride for sure but great that this is able to happen here in this facility. Many apartments wouldn’t even allow this. And it gives us both a focus instead of just going through the days with only the ups and downs of Clayton, and for me, how much I need treatment, on our minds. Hoping for the best!


Very revealing conversation with woman down the hall about this place, trigger sad story

May trigger.

This conversation has to do with a person getting their emotional support dog taken away and emotional abuse, so may trigger.

So one of my next door neighbors is this really sweet down to earth woman. Staff here helped her get a small dog as an emotional support animal. They pride themselves about allowing residents to have ESAS here, but the guidelines are not clear and seems to fit whatever the staff think.

So anyway she’s had this dog for the past year. Not sure what kind. One of those small dogs you can carry in your arms. So of course she would bring the dog around with her. Residents loved him! He never barked and was just a really sweet well behaved dog. It clearly did provide the emotional support an ESA does.

Well I won’t go into the whole ins and outs of this woman’s problems because really that’s not the point. The point is they interpreted a situation she was in/ something she had done as a sign that she wasn’t stable. Which wasn’t true at all. Based on that they said she could no longer have her dog here.

So she put it off and put it off, saying her BF couldn’t take him yet and stuff.

Well they woke her up one night randomly to take her vitals. Which isn’t normal. And of course when you’re sleeping your blood pressure and pulse can get really low. And I guess she takes sleep meds and whatever.

Anyway, regardless, it wasn’t like anything to panic over.

Well of course they did. Were like OMG your heart rate is dangerously low!

By the time she got downstairs to argue with the nurse on this the ambulance was there.

That’s one thing I can verify and that really does bother me. At Albany Care unless it was a total legit emergency, especially psych hospitalizations historically take at least an hour or so. So when someone is in crisis or there’s a code yellow or something, the person is monitored in a PRC office until they go to the hospital. They have to do this nurse to nurse thing, send over paperwork and all this other stuff. It makes it more simple once you get there because they have all the info on you and you can even get direct admitted to the unit. On the other hand it takes a long time sitting at the facility waiting.

Well in coming into here they’re like oh no we rarely hospitalize! Because we have the unit and it keeps people within the facility and you are totally in control of whether you’re hospitalized or not, like we work with you.

Well I’m obviously not privy to the ins and outs of every code. But the majority of codes. They say clear the halls and about twenty minutes later there’s the ambulance and the cops! Lights and sirens going.

Clearly they hospitalize and ask questions later.

So this woman was taken to the hospital in the middle of the night. Of course her heart rate and e everything was fine. But then it took five hours for them to get an ambulance to transport her back. That I also do believe. When I was sent to Masonic for an evaluation it did take a few hours to get medical transport back. They should have just admitted me honestly.

So she gets back. And they had taken the dog! Called her BF and had him come take the dog.

Like I don’t know if that’s even legal! And the thing is they helped her get set up with this dog. The whole thing had nothing to do with the dog. They just claimed she was unstable so no more dog.

This also happened with a guy on the second floor who had a cat. There were some issues, and they literally took the cat had the cat in the director’s office for a couple weeks. Jess and I were going to watch him for a weekend and then they, director here not the guy, were just going to rehome the cat!

Well the guy got himself discharged and got his cat back thank goodness.

And this woman can still see her dog because he’s with her BF. But the poor thing! She says he’s not eating or sleeping, and he has a “stress rash” on his belly just like humans get! No wonder he misses his mommy! And the environment he lived in for a year.

She put together a petition to get him back. Doubt that will sway them but at least she can feel like she’s doing something you know.

So yeah we were just talking about how useless they are around here. From medical appointments being made, to things like how she was treated. All the promises they made me coming in and how I’ve been left hanging.

She did recommend a couple places for therapy that I hadn’t yet tried. I now have two places my mom would help pay for as options. But if not will look into the others. Again like one was a women’s trauma program. Wonder when anyone around here would say something about that! Doubt they even know about it.

But yeah she was saying that their paperwork isn’t up to par, and that there’s a rumor the place could get shut down. I doubt that. There’s another place that was called summerset. It did get shut down, because everything was insanely terrible. Took forever though. Actually new caseworker worked there before Clayton. She’s like I got the hard place over with first!

I guess it was shut down ten years after she worked there but yeah.

So that was a very revealing conversation. Feel soo bad for the dog and the woman. That’s beyond unfair and abusive.


Last night on our floor

Hey everyone,

So officially the last night in room 409. Amazing room on amazing women’s floor! I swear this floor is the best part of the whole place.

Very sad as we’re packing things up.

We have heard from staff and residents that two can be chaotic/ we won’t like it. They say four is the best floor which we know!

I’m uncomfortable with the co-ed aspect.

Of course other staff say it’s fine.

But we know the people that are honest and believe them. Though our rooms thank goodness, are on the complete opposite side of the floor from the crisis unit, as they often bring people up there when there’s a code, there will be a lot of them. For codes they clear the halls and it’s usually on one and two.

So that’s something.

Then I know Jess will miss her bathroom.

We’ll just both miss the peace and quiet and comfort of the rooms and people on the floor.

It’s like we were just getting to know these people, had a conversation with a woman down the hall that was very revealing. Will post on that later.

But yeah. Met our new Case worker. Lakysha. She seemed ok. Worked here a very long time. May be more personable than Tasha we’ll see.

To listen to her supervisor Robert contradict himself, half saying they help with everything (including dissociative stuff/ finding therapy/ whatever you need) and then half saying they don’t just yeah. That guy is full of it! He totally reminds me of the money hungry executive director that took over friedman.

But yeah talked about stuff. Like I said who knows? Told her I identify as having alters, and she said she knew about this. Worked with someone who had before.

I thought Tasha said that too but she was no better. Robert and Lakysha were like it’s not an uncommon symptom. I’m like really? Then how come I’m getting no therapy for it. If it were depression anxiety or psychosis you would have no hesitation in helping. But with this it’s like you’re really not doing anything, say you can’t do anything but then say you can.

Didn’t say all that. Just the part about how can I work on this, they said I’m the only person who can control my alters, if I have absolutely no evaluation at all in all the months I’ve been here? And no advocacy in getting one outside of here?

They didn’t have any answers for me except to listen let a beat of silence go by and then say they can help with anything. LOL!

I guess that’s about all on this. The one maybe good thing might be that two has better internet than here. If so I can get back to online volunteering and maybe skype. I’d gladly stick with this internet and stay up here though!


well,it looks like we have to move rooms after all

Hey everyone,

Just a quick update.

Since I’ve been giving Ellie elevator lots of love and caring attention it’s been working! Just like talking to plants or animals it really does work!

For about a month now. Really acting like it likely was for the time before all this happened. As they said before that the last time they had a major problem with it was two years ago.

Anyway. So Jess talked with Tasha. And asked her about whether in fact we have to move floors. Due to the fact that if the elevator is working why move.

According to Jess she seemed to wholeheartedly agree and said she’d speak to David.

I did kind of trust her with this one thing. Well I’m not surprised at the outcome.

Basically not only did she never talk to him, but when David wrote us to say Jess’s room was ready, she said the whole thing is up to him. Not up to us or her or anything. Which isn’t what she’d said to Jess and my perception of the whole thing ongoing was that we were all working together on it. Though haven’t heard from Jessica the director of the whole place who should be in our corner on all this in weeks.

Again the no communication and no advocacy doesn’t surprise me at all anymore.

David insists that we move because the elevator could break down at any time. And they’re sure they will be repairing it though no one seems to know when and it’s clear that no one is communicating about it at all!

Again none of this surprises me. I had been looking forward for the past week or so to staying in this room on this floor. Everyday I seem to meet one more nice girl up here. It just feels very safe to me and my room is my little sanctuary.

I was really looking forward to that stressor being off the table when so much is still going on. As a side note no progress on therapy yet. Since this past weekend when my mom heard from Connor no news. Did write a couple more places, one that did say they worked with “losing time” but haven’t heard anything.

So things like that weigh on me and wear on my nerves/ mental health every day not to have that emotional support for anything still!

But we have to do what we have to do. Though this was not what we signed up for, and had we been told that there was even a possibility that the elevator would be fixed/ was unreliable we would not have moved, it’s not like we can just up and leave. Jess and I are interested in looking at other places particularly the one we looked at in 2015, to just see what’sa out there. But we have to do what we have to do.

Poor Jess has a box for a room it sounds like. One window no view. My room is a bit better and Jess says we can replicate my corner.

She’ll have her bed which is important as it fits her physical needs.

We will be doing laundry, sorting and packing stuff tomorrow and Thursday. Hoping to move Friday but maybe Thursday.

Will just have to see how things go. Will be a huge adjustment for us especially me. I do not trust any guys in this building at all except two. Those two I have seen have the capacity to be sensitive and not sexual around me. All other guys I just never know what they’re up to. They get up in your personal space and say lots of insensitive things. Are very atgressive and just give me a bad feeling.

There’s G, who don’t know if I said a day after his first apology asked if he could kiss me! I reported him again, and tonight he apologized again. Obviously his apologies mean absolutely nothing and he clearly can’t or won’t control himself in this area.

Staff say he’s actually banned from being on the second floor, however no one seemed to react when I called out forhelp when it happened. Granted he was there waiting for the doctor as I was but still.

I knowof other guys who I find very aggressive and untrustworthy who I believe are on two.

So I don’t feel safe just walking around the floor in my pjs or even talking to those who live there.

Even though G never touched me I still feel violated. Maybe I’m too sensitive but those are my feelings.

So will keep you posted. Hope the internet works down there. In theory it should work better because the router is down there but you never know!


things settling down: Heard back from Live Oak, probably won’t have to move rooms

So things are actually settling down. Or seem to be.

Ellie our faithful elevator has been working solidly for almost a month I believe. This is great when you remember it was breaking down every other day/ once a week before. I’m telling ya it’s me calling it Ellie and giving it love every time I use it that makes all the difference!

So as time has passed here of course things with the actual move are up and down, happening it seems whenever staff get to them. It was before the holiday that we saw the rooms. We were waiting for someone to move out of Jess’s new room. Then that didn’t happen. So we didn’t move last week after all. And of course no one is talking to each other. David in admissions is the one supervising and facilitating the actual move. But Tasha has no idea what he’s doing and only relies on whatever we say.

You would think people would communicate much better here! I really thought they would coming in, because there seemed to be more layers of supervision and support for various staff and smaller caseloads helping I would think there to be better communication.

But anyway yeah. As Ellie continues to work well even some staff question why we need to move now. Why not wait til they actually do the big remodeling? Of course there are still those staff who think we should be on one instead of two. When one is total chaos.

Jess and I were also going back and forth about whether Jess did really need a bathroom or not. So we were thinking of asking David if there were other rooms with bathrooms on the floor. Though if one was on the complete other side then that wouldn’t work with me on the other side of the floor.

But she talked to Tasha this morning who agreed that if the elevator is working fine we shouldn’t have to move.

I’m very very excited about this! It saves a whole lot of anxiety over moving, depression that all this happened and general stress about adjusting to a new floor.

In other good news. I was about to re-contact Live Oak on Monday. As I hadn’t heard anything. Then yesterday mom called me saying she got a call from someone there.

It took a little while for her to replay the message and remember the person’s name and everything.

But anyway. His name is Connor Willams. He’s the practice manager. So I’m not sure if he’ll actually be seeing me or if he’ll be assigning me to someone. He’s the first therapist I’ve written explaining about the fee situation who’s done as I requested and called my mom directly about the fee so that’s between them rather then telling me their fee, (me knowing would cause major anxiety!). I think that was one problem I had with Beth. She was an hour away, I didn’t get a good vibe from her and I knew her fee.

Sadly many of the therapists I wrote told me they had no openings even before we had the fee discussion.

Anyway he sounds really good. He uses somatic experiencing and a very relational model. Looking at all parts of yourself which I guess is literally what’s happening. Parts of myself are getting a mind of their own.

My mom and I had a good laugh as she looked through the pictures of all the profiles and described what people looked like.

One funny thing about this place is for some reason, they decided to have an office in Atlanta GA! Why they picked there I don’t know someone must be from there. Well it says that’s where Connor is. We laughed about him traveling there and back all the time or something. Which again makes me wonder if he’s going to be just assigning me someone.

In any case all these therapists sound wonderful. List is below.

So I’m really excited! This is literally the farthest I’ve gotten with any counselor since starting to search in March!

I’m also anxious and hoping they will be able to help me or at least try.

Will keep you all posted.


creepty experience waiting for psychiatrist the other day

Hi everyone,

Haven’t gotten the chance to tell you all about this terrible experience I’ve had the other day. It seems like not to stereotype, burt many men I come across in the MH peer community whether in places like here, it happened at Albany care too, or in outpatient settings, seem to be very impulsive sexually. They can’t seem to control or tell when it’s not appropriate to make sexual remarks/ gestures and I think it’s very abusive of them. And more needs to be done to educate/ do therapy on this exact subject and not bet around the bush saying it’s just part of general impulsive behavior or “just how that person is” and to protect others from what is sexual harassment/ abuse.

Anyway, in this example I was waiting to see Dr. Cleary for the second time. As in hadn’t seen him since May. Jess happened to be out and we had seen no list for the Dr. So of course there was a big project of getting me both down to where the psychiatrist was seeing people and back up to my room but I won’t focus on it here.

So got down there. There was a man I’ll call G. I’d heard his voice before so I knew him by voice but couldn’t remember his name. He tended to do this really cereepy laugh a lot like to himself and that’s unnerving in the first place. Anyway so other guys are sitting around also waiting. And G is pacing up and down doing his laugh/ talking to himself thing.

There is a housekeeper on the floor but no other staff except the psychiatrist in the room he’s working in and one of the nurses. There is the social work office but that’s way! Down this huge hallway so on the complete other side of the floor from where I am. Technically resident assistants are supposed to be visible but none were around.

So G randomly is like asking where Jess was. I said she wasn’t in the building at this time. So literally next thing he says is “Do you want to have sex?”

I a shouted “no!” He laughed at my reaction. Then said “because I haven’t done it in awhile.”

I told him to leave me alone several times. But he kept pacing around a few feet away from me and worst of all the guys around us rather than telling him to stop were laughing at the situation. To me someone who hears this kind of exchange or sees abusive behavior and does nothing, or worst of all participates by laughing is just as guilty as the person who’s started this especially if they’re laughing it means they’re part of the whole thing too.

Again housekeeper didn’t hear this. So he comes closer never actually close enough to touch thank God. He continues to say stuff about how he watches me all the time and we’re boyfriend and girlfriend. And just laughing and laughing. Like all I was was a sexual object. Now to complicate things there was a housekeeping cart plus an actual bed, don’t ask why! Blocking the hallway. So if he did try to touch me/ I felt the need to run my path was blocked. I had no social protection/ anyone to stand up to this guy. All I had was my cane and my voice.

I did say in a very loud voice at some points “Hey! This man is bothering me!”

No response from anyone.

So I decided I had to get this guy’s name. As I’m blind I couldn’t describe what he looked like. And since there were several guys there I couldn’t say it was the guy. I asked him his name which of course he wouldn’t give me and kept saying not to tell anything he said because I’d be in trouble. Honestly I wasn’t scared of that because I knew once staff knew he’d be the one in trouble!

So he gave me a false name and kept laughing at the fact that I now knew “his name” that wasn’t actually his name.

So went in to see psych finally! Told him and the nurse about the experience. Of course I was quite frustrated that I couldn’t describe the guy’s appearance. I said the name, which they said they didn’t have anyone living here by that name. Then a lightbulb went off in my head and I realized I knew the name! Well they also started listing names off that were of the people in the hall and I knew it was G.

They said he’s “very inappropriate” no really?

So Cleary is like “other than that how are you doing? “

Yeah other than being sexually harassed I’m having a great day!

We talked about how I still can’t find a therapist months after me seeing him. And how stupid caseworkers here are that they don’t do anything for residents and expect you to literally advocate for yourself in the system when you’re living here so they can be your advocates. He said he’s had residents come to him with forms that the caseworker is supposed to sign but they tell them to bring to him.

He asked about “dissociative episodes” I said I’m working hard to control them. I’ve been afraid since discovering how turned off professionals are by even hearing about such symptoms that he put something down on my chart about it. Since this discovery I went from at first really wanting a diagnosis of whatever is happening with that so I could get proper care. Now I know the mere mention of these symptoms sends the majority of professionals running so I absolutely do not want anything on my chart about it.

I shouldn’t have worried he made no other comments after asking me this. We talked about St. Jos and how all the great therapists and nurses had left.

My meds were good so I just left. I heard them lecturing G after my appointment which was somewhat satisfying. Still I felt violated and dirty and like I’d been treated like a non person/ sex object for the rest of the day.

Again I think this is a very serious problem and probably underreported in these settings. There was a situation at Albany care where a guy routinely was exposing himself to people. People told about it and often were told “that’s just how this person is.” And those who had been harassed by this man had to then alter their schedules of where they would see him so they would hopefully not run into him. I guess eventually staff did something but their whatever attitude is so horrible.

I don’t know how to stop things like this, and I know that the people doing this need serious help. But it is very scary to be in situations like this especially with a disability like being blind that affects a lot in that situation.


relaxing day: did online intake for live oak

Hi everyone,

Not much happening this Monday except resting. Was up late last night looking over Massachusetts mental health care. Very driven about moving/ preparing as mom seems really on board with it all.

Want to take advantage of her understanding and patience. And ability to talk with people and get needs met.

She has seen good things about this online/ phone therapy so will show me that.

I’m wondering if I can do phone therapy with someone who is in MA and they might help with resources around transitioning back. Since people out here have no clue and don’t care.

So it gives me hope to be doing this and that Mom is on board.

I do want therapy to address the dissociation and what goes with it. As running and hiding from it is not working. But if professionals who I even mention broad symptoms to end our conversations in the same way that happens when they hear about blindness that makes me afraid of all this. If they’re too afraid of what’s going on in my head to even try meeting me then how can I accept anything in my head?

So I’m hoping a more liberal creative state, relative to IL at least might have better answers/ abilities to at least treat you like a person and not just like someone with a bunch of strange and overwhelming to them symptoms.

So have been thinking a lot about this.

Honesty gets you in trouble in one way or another with professionals so often. But live oak really does seem competent around all identities even disability with accessible forms and everything. I did say “time loss” and “unusual symptoms/ multiple selves”

So hopefully no olabels and maybe they’ll at least have the flexibility and conviction that someone is way more than any diagnosis to at least try it.

By the way the website is:

The intake is online. They even asked if you’d rather they e-mail or call and I said e-mail as phone calls make me super nervous.

Will get answers soon but maybe later than usual due to the holiday weekend.

That’s honestly all for now.


July 1: update results of care plan moving this week and mom really trying to help me with therapy

Hi everyone,

Probably left people in suspense Wednesday as I was really down about care plan and looking at rooms and then didn’t write for awhile.

So looking at rooms was good. The rooms we’ll have are really on the same exact side of the floor that ours are now. Mine will have a bathroom. Jess’s won’t but she’s ok with that. I’m the one more freaked out about not having one or trying to find one in the night or something.

Jess says she can recreate my room pretty much like up here which is good. We will have a good resident assistant Jo, and a good housekeeper.

We will also of course be changing social workers. Not such a issue for me anymore. I only wanted that when I thought each caseworker was different and another would be more approachable than Tasha. After that meeting and seeing Jeny’s transformation and just how different people react with similar detachment in a variety of situations and people, I know one is pretty much just like another.

Tasha said that Lakysha “gets things done” which is probably the best I can hope for.

The problem is just ugh guys! Like a whole floor of them. At least the ladies room is clean most of the time because there are so women. But noisy obnoxious guys who will probably smell up the floor.

I really have been getting comfortable on this floor and the different know me and Jess our routines and everything. I really don’t want a new bunch of people doing the whole OMG blind girl thing. Though they all have seen me around the building and are used to me. It seems guys are also known for doing bold things like insisting on knocking on people’s doors getting in your personal space and other things that get on my last nerve.

I’m not at all comfortable with the guys. I’m glad Jess will be around but still.

Plus the crisis unit is here not sure how much action there will be on our side of the floor but there’s a stairway close to our rooms and when the elevator does go out for the time period of repair all stairways will be used for codes and stuff.

My room was totally ready. I think David kind of wanted to move me Friday! Jess’s room has someone in it at the moment. And they need to clean and repaint.

David at the time seemed anxious to move us before the fourth which will be tomorrow or Tuesday. But things change around here very fast.

So care plan. Ran late as Tasha was out with a resident and her cell died. Was just the two of us Jess me and her. Rob her supervisor was doing paperwork somewhere.

It went fine up to a point. I was as neutral and unemotional as she is around symptoms improving, saying I know how to most of the time see when I’m starting to dissociate and somehow block it out as well as blocking out anything internal that isn’t my own thoughts or emotions. She was impressed as I had said the first care plan that I couldn’t do this.

Goals: get used to new floor. Go to groups particularly women’s group. Continue looking for a therapist, and help Jess with fostering cats.

The therapist thing she really has no advice on. She was shocked that Masonic outpatient is not accepting anyone. As well as northwestern. It’s like honestly, you guys should be the ones calling and knowing all this info. If they’re gonna require residents to make their own phone calls they should at least have an idea if they can actually access the services. Otherwise what are they there for?

That question did actually come up as did a wave of emotion. I don’t know how I got on the subject but I ended up saying something about the famous “meeting” in which Jessica and Sarah explained the whole “blank slate” thing. I said how much that effected me and how I had to be in a place of keeping my emotions in because I couldn’t connect with anyone in social services.

She did seem, and look according to Jess genuinely shocked. And was to be fair actually more emotionally responsive than I’ve ever seen her. Maybe no one ever came right out and said how much it hurts to be trying to talk to a blank wall. Jonathan said once that I shock people because my emotions are so raw and intense they don’t quite know how to respond. And I point out things in a way that they maybe never have thought of. Because there’s just something about how when I do open up it’s without any pretense, in spite of me trying to hide things for so long.

Anyway we went around in circles really. She couldn’t seem to grasp the concept that if their whole protocol or whatever took the whole attachment part of the relationship off the table, or as much as possible, that would stop me automatically from feeling like I could go to them and express anything. Because I’d know because it was spelled out to me, and I’m intuitive anyway, that I couldn’t get any kind of emotional support. I described now in tears what emotional support looks like and how their so feared possibility of caseworkers “practically tucking residents into bed at night” is just as unhealthy as this “emotional independence meaning that the staff operate from a million miles away throwing out coping skills” thing.

I said that too. I’m like when I’m upset I don’t need a list of coping skills. She’s like oh no we wouldn’t do that we’d actually help you “work through” your feelings.

I’m like again no you couldn’t. Because the basic trust and feeling that at least on some level you’re there no matter what and will put your absolute best into the relationship as will I just isn’t there and won’t be if you’re coming from an inauthentic detached place.

I then used Jenny as an example, heading into territory that’s likely none of my business. And she’s like well Jenny is like that because she’s in a different role. I’m like yes exactly. She goes from therapy intern to caseworker and all of a sudden she can’t be herself really at any level anymore?

So it was just pointless. She remained shocked though it kind of wore off by the end and it was more neutral, but still saying me keeping my feelings in isn’t healthy. No kidding! She said I should talk to Lakysha and put my expectations on the table. Again doubtful. I never met the woman but have seen enough of these different staff that sometimes I swear you can’t tell one from another it’s like they’re little robots or something. Not that extreme but in the range of having to shut down much of their personalities and ease with people like somehow it’s against the rules to just be a person around these “ill” people. Like we couldn’t take an authentic relationship or something.

So anyway. That’s the last conversation I will have with staff here on this. I got something out of my s system. It’s so sad because if they’re coming from a shut down place I think it makes people shut down even more. It’s like I’m becoming numb to it in a way. They’re modeling very unhealthy strange behavior for relationships and it’s just crazy!

So on the therapy front. No success with anything I can come up with. Still nothing around any of the therapists I’m on waiting lists for. One said I could check in every month so I’m gonna shoot her an e-mail. Such a shame northbrook is so far away that art therapist seemed the first genuinely interested candidate. And having worked with DID and people with disabilities so not afraid of either.

She may write back with recommendations so we’ll see.

My mom is so cute as she hardly ever looks stuff up online. So when she finds stuff she’s like OMG this is soo cool! Like she’s like “there’s this website where you can put your zip code in and all these therapists come up! And you can do a little “intake” and check the boxes for anxiety or depression and you get ones just for that!”

I’m like yeah that’s probably psychology today LOL

She did find some online therapy site. It’s a shame the internet connection here, even in my sensory corner is so bad because I would use skype. I could use the phone though. And that might work better as I would save on rides.

I have a couple places I can write. Larger group practices where they match you with people. One Cathedral I don’t think I’ll be going to as there’s major construction right near the building. We get enough of that on rides places. But one place Live Oak and another Chicago counseling associates sound good. One place even cites “losing time” as a problem they can help with.

Looking up therapists makes me very anxious. They’re so totally scared off by dissociation stuff, even trauma ones that I don’t know how to present myself. Like you learn pretty quickly well I have as a blind person that when you’re introducing yourself to anyone, but especially different non blind related services you do not start with I’m blind.”

So ironically though this is a mental health issue it’s so outside the norm that it’s almost it’s own disability. So I’m not sure how to put the whole thing. Mom says just tell them I need therapy and then they’ll give me an appointment. And for her with her general stress issues it has been that simple. I said with this stuff it’s more complicated and they do a pretty thorough job of intake including asking you about every possible symptom under the sun. I explained how I never actually said to any of the therapists except the DID ones the diagnosis itself possible one. I described the symptoms. Just those descriptions ended the conversations.

So we’ll see. I know the first place to start is obviously that though I’m living in an MH residential home they do not provide therapy or help finding it. That’s a lot for them to take in to begin with. Many don’t even know about SMHRFS. Then I guess telling them about my long standing issues, depression anxierty and PTSD from long established trauma history. The huge amount of stability gained in the last five years. The severe panic attacks, how I quickly got control of those but the terrible fall out including time loss and out of character behavior along with the sensory and communication stuff.

I guess see how the conversation goes. I also learned the hard way at least with Ryan that once you put possible DID symptoms out there there’s no turning back. If the person is totally in flustered no way will I continue with this mode, there’s no getting them out of it. So it’s an intense process. For all therapists say how inviting and sensitive they try to be to welcome new clients, I’ve found quite the opposite around this issue.

But we’ll see. Mom said “until we get you home I’m not giving up on finding you therapy.”

Which was really really sweet. I do worry about her and the financial aspect. And that it won’t go anywhere. I work so hard to keep everything together I’m so afraid of anyone going in and trying to have me look at everything. I just want answers on how to not lose time and block out these states in my head I get into. I can for a solid period of time but then it’s so hard to maintain that it just takes it’s toll and I’m exhausted. Then I just kind of let stuff happen for awhile. But then my life feels like not my life anymore and that sends me into fighting mode again.

I’m hoping if I do this long enough and hard enough whatever’s in my head will click back into place and stop trying to run my life. I know it’s way better than it ever was. Jess’s theory is that a few minutes a day is better than weeks and that somehow I feel less stressed after others come out. Go figure!

Will keep you posted on everything. Will be one crazy week if we do have to pack up and move. I soo wish we could just leave it til they’re more sure about when they’ll be starting repairs. If just maintaining the elevator long term is the goal, then it could be many months out before they do extensive repairs. Meanwhile we’re sitting on a very chaotic I feel, floor. With poor Jess not even having a bathroom.

So we’ll see. They are being super accomidating for all their talk of detachment and not working with you on issues. I suppose it’s because they clearly are causing the issue here. Or did by not warning us at all this could be a problem. I guess it shows they do want us to stick around.

We’ll see about that.


stressed and depressed: looking into possible new rooms tomorrow and three month care plan

Hi everyone,

So the only good news is the elevator is still working! I tell it I love it every time I use it and to please keep working.

So finally staff are moving on actually connecting with us on this. Admissions guy David who I do really like said he honestly doesn’t know what the long term plans are for the elevator. He said he heard it would take a month which I think is extremely short, it will likely take several.

In any case we can’t do this it breaks, what do we do about going up and down the stairs, oh ok it’s fixed for a few days thing. How can you do any daily life stuff with that?

But the prospect of moving rooms? What really sealed it for us coming here, besides them saying they’re trauma informed, was the rooms. On the women’s floor, there’s women’s on four, men’s on three and co-ed on two, and then a few people on one. Right next to each other just really awesome rooms.

So now the one thing that makes here ok is going to be gone likely permanently because if they have the empty space they need to fill it.

One is crazy chaos because everything is right there. And no bathrooms in the rooms.

Two has the crisis unit on one side which is really loud. The side we live on on that floor has a group room so while that’s not going on day and night it is happening much of the day. So a lot of people kinda congregating near our doors.

So we’ll have to see.

I heard there may be Jenny the intern turned caseworker on there. But to me it doesn’t matter. If they’re all instructed to act a certain way, really personality doesn’t play into it.

One of the residents said that these caseworkers do have their “favorite clients” that she’s seen Tasha go downtown to the furniture store with someone she really liked. I’m li,ke ok? I couldn’t imagine Tasha taking anyone anywhere, never mind to buy furniture! She refuses to even make phone calls. The one thing she did do for Jess was get her a state phone since the last one went in the wash.

So it’s just I don’t even know anymore. Tasha finally I guess remembered we have our three month care plans coming up. Probably overdue. So bothours are tomorrow. I get the afternoon one since I am not awake in the morning. My nap is like someone’s cup of coffie.

And it’s like, I have no idea what to say! My goals for the last few months were really getting help with the dissociative stuff, starting therapy really feeling safe and comfortable here with staff ETC.

Well safe and comfortable went out the window when I found out about their “blank slate model.” They’ve made it clear they refuse to even work a little on anything dissociative disorder related. Not that they really help anyone in their symptoms just throw coping skills at you and say “one day at a time.”

If there’s no connection, purposely, to me there’s no point in seeking them out at all. And it’s unhealthy. This way of doing things is just as bad as someone being too much and not letting the person do things on their own. It’s like there’s no middle ground with these people.

So no. What’s happened the past three months? I’ve shut myself down emotionally. I work like hell every single day to basically block out anything dissociation related. I can’t even find a therapist in general. I think I could have maybe had Ryan but being honest and telling him my symptoms literally scared him off even though he is a trauma therapist. So I’m just existing day by day and trying to stay in control and have a positive attitude. If I start to show any emotion or talk about anything I’m experiencing I know I’ll be judged for it because I have been. In that same explanation of the blank slate thing Jessica and Sarah both said I was emotionally too dependent and getting all worked up for no reason about the whole Jonathan thing. And so I know they don’t get someone with intense emotion.

So why hurt myself even more by giving them more to go at me about?

See I don’t think emotional dependence is the issue. I never had healthy connection growing up. And so many professionals like them were very dismissive and just never gave me a chance with what’s happening with me. So basically hammered in the message that I shouldn’t be “so emotional” in deeper.

The therapists that have gotten it built a relationship with me that was balanced, where they were authentic and personable but gave you the full responsibility of whatever you were going through. They never made choices for me. But they were with me in my corner and invested in what was happening with me so I knew they were there. And with that I could really grow and work through things.

With this it feels so cold and almost punishing like you *have to* be alone and do this alone and even though we’re technically working here and you’re paying all this money for us, well oh well you have to figure it all out. It’s just not human. It’s not how people naturally act towards each other.

So I know things won’t change with them. And I’m actually surprised and impressed how willing staff is to work with Jess and I on the whole eleveator room changing thing so it’s clear they care about our physical well being, and some caring about trying to make things ok for us to keep living here, (as in they’re not just saying see you’re disabled can’t take the stairs goodbye.) but they somehow can’t translate that to the emotional level of just who you are as a person and then addressing the symptoms.

I will say this dissociative disorder issue, whateverI have to shelve it. Because it scares people. I feel like it’s like being blind or having some other huge pronounced disability that’s not well understood. The professionals even just hearing about it, not even a diagnosis! But just hearing you talk about experiences that might fit that, become totally obsessed with what they think that will look like for you based on some probably off assumption, are just flustered and then shut down and that’s it.

I already have enough stigma and misunderstanding and that kind of OMG we can’t handle it before even trying behavior. I refuse to have it on a mental illness level.

To go back to Jonathan saying there was nothing my illness could do that we couldn’t face, and then his total shut down when these symptoms came up. That spoke for itself. And I’m seeing this over and over and over again. With the people here, who said they were trauma informed and they’re the least of that I can think of. With outside professionals, who specialize in trauma and even dissociation. But oh no might be DID that’s it!

And it’s like no way! I have been turned away and brushed off in so many areas because I’m blind and had that judgment put on me about what blindness would mean for their relationship or interactions with me before I can even explain myself. I will not have that associated with mental health stuff no way.

So now I’m really afraid of what Cleary actually has put on my record. For the longest time I wanted a diagnosis or maybe several, to explain everything I was struggling with that had no name. And I thought then I’d get the care and genuine support from the professionals that I need. In this case DID or anything in that range is like a black mark. If I have this on paper it’s gonna keep me from getting even unrelated general mental healthcare. Or who knows what. That’s the worst part. How can I accept any of this if the professionals, people that have gone to school have studied similar stuff that I’m dealing with, absolutely can not accept it?

So yeah. I don’t know. I’ll probably just present my Sam is doing ok will keep trying self. Because anything else is literally talking to a blank wall.

I can’t change their minds if that’s how they believe people should be treated. I have no energy to. Whatever I say however emotional I get it will just be turned against me so.

The care plan is a paperwork formality exercise. It’s not at all about my well being or care or anything. It’s for the state.

Lastly one therapist did amazingly! Get back to me with possible openings. She is an art therapist who has worked with DID. The last person I thought would write back. She’s in northbrook which I think I’d have to do a transfer with paratransit to get to and back. But yeah just go figure. I explained this and maybe she’ll have recommendations. I don’t know.


elevator update hopefully some decission made tomorrow and still no therapy

Hi everyone,

Well it’s the middle of the night and I can’t sleep. Hot as hell in my room.

Today after the elevator was actually working over the weekend just fine, they came in and purposely shut it down to repair cables for a few hours. Well it came back up and not two hours later it was out of order again!

Why they didn’t then come back and fix what they broke I don’t know. The one time it was working!

Anyway so we got our meals and meds up here. There was bickering with the kitchen staff saying we should just use the stairs anyway but Chris put a stop to it. Chris is like The Man with all this. He’s done amazingly trying to mediate between everyone.

So we were up here all day. Mid afternoon as the elevator was still not working asked about stuff for tonight. He said same as earlier. I asked about if he’d read the e-mail I sent last Friday night, when I again couldn’t sleep. He said he did and him and Jessica Lyc were going to follow up with me about it. Haven’t really heard from her since weeks ago as she’s coaching the new admin of another place in their company how to do her job. If she is imparting the “blank slate theory” I feel very bad for the residents who will be getting not good care.

So have no idea what she’ll have to say. She truly surprises me! She was so genuine to begin with, I strongly believe those traits are authentically her. Yet then a few weeks in she hits me with the whole blank slate thing. And seems totally sold on the idea like it is in fact something she values. I think it’s mixed as I said. But professionals get anxious and flustered when you read them. But with all this stairs thing. I mean if she really didn’t care she could have either demanded Jess and I get on with it, or discharged us because now our physical disabilities are becoming the issue.

Which I never thought they would. Really work to make those as invisible as possible in this type of place because most places are so afraid of acomidating them.

But in any case she’s actually working with us.

So I’m presenting a very positive gracious thank you for working so hard with us and we’ll work with you kind of thing.

I talked about my anxiety around not knowing about room stuff, changes when it will happen or where. And confusion around every time the thing breaks down what will happen. I came up with a compromise where if some meals and meds were brought up here, well only one meal, then we would only have to go up and down twice a day with significant time for rest rather than four or five times.

I suggested that as something for the relative short term as in if this continual repair and shut down thing goes on for say days to weeks.

Longer than that and looking towards the major renovation definitely moving.

Really wanting to move rooms not in a crisis but to really try and see the floor have some choice in rooms if possible.

And then of course there’s the choosing whether to have those new rooms be temporary as in holding these current rooms for us eventually. Or to just give those rooms to other residents. Which is really really sad because like the one thing both Jess and I lovehere is our rooms.

But if it’s a year even six months out with this happening some new residents will come in who can climb up here who do need the space.

And honestly the way things are with my non relationship with social service staff, due to their blank wall approach, I may decide to move at some point in the future. This was not what I signed up for.

I’m not asking for staff to be my friends. I am asking for some sign that they truly care about me as an individual and my well being. They’re showing that with the physical aspects which is interesting why they can’t translate that to emotional stuff. But yeah just some sense that Sam nelson is a person who is worth helping and matters to them. Of course everyone makes their own choices! It’s kinda like they say well if we discourage all attachments and just kinda coach from the sidelines with skills or whatever then whatever progress or not residents have is really only theirs because we didn’t have any emotional investment one way or another.

It’s like well the person is probably gonna make whatever choice regardless of what they do. But the basis of life is human relationships. If you’re going to help someone heal from probably a lifetime of being hurt in relationships you have to show caring and commitment to the person and whatever path they’re on. To just be with them and let the process unfold. Jonathan would say “I want to be there before during and after people make good or bad choices.”

I think that’s the goal. Not this cold almost mean punishing well I don’t care either way pretend I’m not here and just do it alone because that’s how you’re gonna be when not living here. I mean I guess that’s the message?

How to navigate and get something out of interacting with people who really don’t give two? I mean if that was the “real world” I wouldn’t have those relationships in my life. I wouldn’t connect with someone who was cold and completely inaccessible emotionally. I would not ask for support from them. I’d be very sad that they were like that. Because it’s unhealthy.

They’re teaching us how to handle unhealthy relationships? And like still be ok? I mean we got enough of that leading up to being here!

I’m struggling to figure out what the test is here. What they’re actually trying to achieve in how they’re so narrowly relating to everyone believing that every single person walking in the door needs that way of being to heal.

On the therapy front. Both IL Masonic and Northwestern are not taking new patients. Called Mercy Hospital and she’ll return my call like next week or something. Somehow am not holding out much hope about them as everyone seems totally booked.

One place recommended I call NAMI and claimed they “do all the leg work” to find you a therapist that works with your insurance. It was the biggest joke. The woman was like there’s a website called psychology today. It’s like no really?

Couldn’t get off the phone fast enough!

So I don’t know. Again it’s like well if staff here are so commited to being so emotionally hands off, but clearly totally value having a positive therapeutic relationship with your therapist, and there’s no therapist then what?

Since I have never in my life heard of a place subscribing to this distant blank slate thing, I doubt any other facility will have this as their general policy. Which would make it one step better than here.

It’s the emotional environment that I can’t stand and that I’m fighting within myself to just keep it together because to show them any emotion or symptoms means I’d just get coping skills fed back to me, and that’s about it. So I have to just be ok and neutral about their lack of investment because if I’m anywhere else, then I need something they can’t provide.

I’m trying like crazy to stay positive and in control. That’s all I can think to do.

Hoping I can eventually sleep tonight. It’s twelve thirty at night now.

I will be “too tired to think” tomorrow as I like to say but very anxious about some resolution so anxiety will energize me then I’ll crash.