FB page for a friend of my sister’s who comitted suicide

Hi everyone,

I wanted to share this link with you all.

https://m.facebook.com/groups/742149375916458?refid=27

Megan was a good friend of my sisters. They went all through school together. I remember her most coming over our house she was very bubbly and outgoing. She was very open and friendly and didn’t stare at me like her other friends did because I’m blind.

I guess it was no secret that she had mental illness and she was very open about it. It says here that she helped other girls who were going through similar issues.

She severely self-harmed and attempted suicide in the past.

She killed herself last weekend at her college.

Everyone was devastated. They had a tribute to her Saturday and it was very well attended. Her FB post shows how many people cared about her.

On a sam trying to be funny side note, I wish they’d say some original stuff! I mean if I was her reading that which I’m sure she has a laptop where she is, I’d get tired of people saying I was beautiful and lovely. That’s just not her personality from what I knew of her and heard about her. She’d probably be like “ just say I really miss partying or something!”

But seriously. It was very sweet.

Really hit home though. As in 2013 November 10 to be exact I almost ended my life. Well almost tried to. I couldn’t do anything before someone heard a crash and stopped me. But had I had more time I probably would have seriously hurt myself if not killed myself.

I was in such a dark place. I had also had a seizure that day from meds. That and everything just built up from months of running away from my feelings just pushed me over the edge. I truly felt like I was a burden to others. Especially to my family. Because I do have a disability and I felt like I would be doing my sister a favor because I felt like I was always taking up the attention. I was tired of dealing with my family problems and just everything. For months I felt this way. It took time Jonathan, other staff here, Jess and myself to get me out of that.

So I know what it’s like. That when you’re in that dark place really nothing anyone can say will make a difference. Once you’re in that mindset of what you’re gonna do it’s almost peaceful. Though

I’m glad that she isn’t in pain anymore. I hope people don’t judge her for how she died. And I hope that this can help people understand the nightmare of depression, self harm, and other mental illness that robs you ofour will to live in the same way a physical illness kills a person.

I can’t imagine what her family and friends are feeling. But I’m thinking good thoughts and sending hugs.

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thank you and group link again

Hi everyone,

Want to thank all my readers who have shared my new FB group for those with mental illness A Circle of Support.

I’ve gotten some new followers right away just from posting this which is cool.

All my friends from other online venues have joined which is a great start. Would love to meet some new people especially other bloggers or twitter followers I don’t know very well.

Here’s the link.

https://m.facebook.com/groups/742149375916458?refid=27

After you send a join request one of the admins will write and ask a few questions about you and your situation to be sure the group is a good fit. You will then be accepted shortly.

Members can be 21 and older with any mental illness. If you have additional disabilities/ health issues you’re welcome to post about that as well.

It is important that members have or be in the process of getting in person support outside the group. Whether it’s professional/ friends/ family ETC.

I look forward to seeing how the group grows.

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Have created facebook group for mental health support!

Hi everyone,

I’m very excited about my latest project! I’ve decided to listen to the consensus that is that FB groups are the way to go when it comes to one of the most popular venues for online support. I was very resistant to creating one because I was unsure first of all about accessibility issues, the ability to be able to control running the group myself. I’ve heard from other blind people that it is possible to run a group on FB which I’m happy about. Controlling the group through e-mail I heard has ended since 2015 which makes me sad since e-mail is the way I primarily work. But to do this I guess I have to get out of my comfort zone.

I looked at the many mental health/ illness recovery groups out there with so many similar names. I wanted to have mine stand out. I’m hoping A circle of support will catch people’s attention and make them want to check it out instead of being one in a crowd of generic sounding mental illness groups.

I’m keeping the group small. Relatively sixty members or under. This way I can keep better track of how things are going as well as the group won’t get so big it’s unmanageable and people feel overwhelmed by the size. Or left out due to the shere number of folks there.

I’ve emphasized in my guidelines values of respecting each other’s differences, trigger warnings for tough topics, and the importance of reciprocal support and that admins will be monitoring members interactions for these things and gently remind them of the guidelines.

I’m hoping this is starting things off on the right foot to put a stop to any possible drama/ major conflicts. I know we’ll have bumps along the way. Not the least of which is me trying to figure out how to do this! But I’m very optimistic about making new friends, being able to share blogs/ videos/ other info, possibly doing google hangouts or skype chat ETC.

I want to thank all my friends from the two e-mail groups I run. You’ve given me valuable feedback about ideas for this group! My home will always be with you all on our e-mail groups.

Feel free to check out my group!

https://m.facebook.com/groups/742149375916458?refid=27

Comment here, or message me if you have questions. Or you can e-mail: nelsonsam68

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book review: Out of my Mind by Sharon Draper

Hi.

I just finished rereading Out of my Mind by Sharon Draper. This is an amazing young adult novel that anyone can relate to and I believe forever makes us consider the abilities of anyone regardless of external difference.

Melody is twelve years old. Ever since she can remember she has been able to observe and remember every conversation she’s ever heard. Words just stay in her head. She picks up everything from her parents conversations to facts off TV shows and this is just as a very young child.

Melody is trapped in her head with all this information however because she can’t talk. She also can’t write. Or walk or feed herself or take herself to the bathroom. She has cerebral Palsy (cp) in which she has very little muscle control. The only thing that seems to work really well in her body besides her genus mind is her thumbs. When she’s little all she can do even with those is hit the play button on the DVD player or change the channel. Or point to words and letters on her communication board of which make up a microscopic amount of what she really has to say.

Through her story we get a glimpse into the life of someone who has so much to say. Who gets treated like she’s of very little intelligence because of her condition. But who picks up every single thing around her. She has a big personality. She loves certain styles of clothes. She’s able to see colors and taste tastes when certain music is played. Her parents and little sister can communicate with her in their own way. But it’s still a huge struggle.

Mr.s V is her door to being able to express all this andexpand her sense of self. To be able to within the physical limets of CP, be the person she wants to be.

Even as a baby/ toddler Mrs. V makes melody work. She has her out on the floor on blankets and pillows. Gets her to crawl for toys and scoot around. Using her muscles to the best of her ability. She talks to her like the person she knows Melody is.

It’s clear to Mrs. V that Melody is extremely smart. She puts lots of words on her communication board to help her express herself more. When she is with Mrs. V melody can basically be a regular kid. She’s not boxed in by other’s thoughts about her disability. She is expected and able to participate in everyday life.

It’s a good thing she has this in her life because the rest of her days are made up of sitting in a special ed class. The class has kids with down’s syndrome and other cognitive issues. Some teachers are able to work with each child’s individual strengths. One has melody listen to books on tape and she actually is able to be productive that year. They get a different teacher each year. One didn’t seem to think any of the kids could do anything and tried to teach them the alphabet endlessly. Melody threw a tantrum and her mom told the teacher off in front of the class.

Fifth grade was better. The teacher actually believed the kids were capable of something. They hired an aid for melody named Catherine. She loves her. They have the same sense of humor and get along very well. At the same time the school starts an inclusion program. Where the special ed kids participate in regular classes. This doesn’t work out for a lot of the kids but Melody jumps at the opportunity. She loves the music class. And then when she goes to other classes like English and history the teachers start to realize how intelligent she is and what’s been stuck in her all this time.

She’s able to give answers using her communication board with its words and alphabet strip. She meets a girl Rose who she likes and who treats her nicely. Other girls in her class are very open about being nasty to her and saying that anything she gets right Catherine did.

One day a girl brings in her laptop. Melody tells Catherine she wants a computer for her. That would help her be able to talk. Why no one thought of this when Melody was oh a toddler is beyond me. But anyway her parents and Mrs. V researched the best computer. It had to be approved by her doctor/ insurance and it took forever.

When Melody got it she was beside herself with joy. She named it alvira after a person in her favorite song. It seemed to have unlimited areas for words and phraises. There were ways to type stuff in in the moment or have things to save. It was hard work just using her thumbs but she had great control of them unlike the rest of her body.

She could finally say what she wanted and needed to say. Within the limets of a talking computer. You can feel her struggle throughout the books as she gains more ability to express herself but keeps coming up against the limets of her CP.

In her history class she hears about a local quiz competition. For fun the teacher gives a little sample quiz. Melody gets every question right! Of course even the teacher doesn’t really acknowledge this as possible and says so in front of everyone. Other kids also are very nasty that she won.

Mrs. V tells Melody that she’ll help her prove them wrong! That Melody will get into the competition and go as far as possible.

So begins a crazy amount of studying. The quiz covers all areas possible. Everything from English to math to history ETC. I think these kids that do the show could probably go from fifth grade right to high school with all they had to learn.

But Melody’s incredibly mind took it all in. When it came for the test to get the members for the local competition she again got on the team! This time the teacher couldn’t deny her hard work. Some students like Rose were proud of her. Others were still nasty to her face or just barely hidden.

Still she continued to go on. She worked well with the team on giving answers. But wish she could participate in the fast paced conversation around her again feeling so different from others. When she is unable to have pizza with everyone (she would have to be fed) she feels even worse.

The team goes to the local competition. And in a tense quiz game win! They go out to a restaurant. Where Melody eats in front of everyone, well is fed and it seems sadly embarrassing for everyone.

Because the team won they are representing their district to go to Washington to compete with all the other teams in the country.

It is another whirlwind two weeks but soon she’s ready. Her family Mrs. V Catherine and most of all Melody can’t be more proud of herself.

At the airport everything crashes down. The team got there early. They went to breakfast and came back to find that the scheduled flight was canceled due to weather. They just managed to catch the last available flight. How the teacher could do this I don’t know and it doesn’t seem quite realistic. But he left her behind. He asked one of the student’s Rose to call Melody’s parents. But in a silent agreement with the other students she only pretended to call.

Melody was heartbroken and the family outraged.

The next day tragedy strikes when Penny Melody’s sister is hit by their mother’s car backing out of the driveway. Melody tried her hardest to stop her through kicking hitting and screaming, she didn’t have alvira with her due to weather. This slowed her down but didn’t stop things. Of course Melody blamed herself. Feeling like she was a burden enough to eople anyway it should have been her that this happened to.

Luckily Penny only has a broken leg. It could have been a lot worse.

After almost losing her sister standing up to the betrayal of the class is easier. But still hard. She’d typed up a response and told everyone off. Rose was the only one who seemed truly sorry. It was clear that despite her intelligence and genuinely ggood humored personality all these superficial kids saw was her disability and how they’d look next to her. I don’t know what the teacher was thinking. Like I said the one thing in the book that just doesn’t make sense.

They got a cheap 9th place trophy. Melody on purpose though people thought if was by accident, knocked the trophy off her tray and it smashed on the floor.

Then she turned and wheiled herself out of the room.

I loved this book. It shows that anyone regardless of disability can do things they never thought possible as long as they have inner resources and outer support. It also shows that people with disabilities like CP probably are very intelligent but just can’t express it. And to be careful about not judging people because you don’t know what’s going on in their head if they can’t tell you.

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who loves degrassi the next generation?

Hey everyone,

I think I’m gonna do some discussion of movies/ shows in addition to my book reviews.

One of my favorite shows is Degrassi. It’s a Canadian drama featuring teens from junior high through high school. Later in the next generation seasons college as well. This show is known for “going there,” meaning tackling tough issues in a true to life way. Not only are topics such as changing intense friendships, family relationships and romantic relationships covered well, but other deeper issues are done real justice. These include: mental illness such as depression, anxiety disorder, bipolar disorder, eating disorders. Cutting, sexual assault, child abuse, school shooting and more. The acting is very well done and characters believable.

I started watching this show when it aired on the N network. In early 200s the TV network Noggin that had in the past featured shows like Ghost Writer, A walk in your Shoes, bill Nye, and other favorites switched over to a Noggin kids section and “the n” for teens. I was disappointed because I just got my parents to get dish network in order to get this channel. Like six months to a year later it changed over. My cousin and I were especially disappointed about no more ghost writer as we liked that show. But when the preview for the show showed an episode with Emma dealing with her period we were more than intrigued. This became a favorite show of mine.

As many know on here, or maybe you don’t, I’m totally blind. Some truly ignorant people don’t think blind people watch TV or movies because we can’t see. First of all you don’t need to see to watch certain shows. Like close your eyes and watch the news you know pretty much everything that’s going on. Or a kid’s show. Or my other favorite show Starting Over.

In addition to the intuitively dialogue heavy shows out there there is a process called audio description. Audio description is when an audio script describing the actions facial expressions setting changes ETC of the show is layered over the actual audio and put in during natural pauses. I’m mixed about audio description. First of all I’m really picky so stick to like the three shows I watch and that’s it. Seccondly I don’t know I mean I watched some movies with audio description when I was younger but yeah. I watch a lot of made for TV movies that are dialogue heavy.

But for this show from the beginning I’ve wished for audio description. The show is filled with nonverbal exchanges. And yes a lot of it is kissing/ making out! But a lot is conveyed by characters facial expressions/ other nonverbal communication as is common I think in the world of teenagers. Guess that’s why I had no social life. Literally. So I was really excited that I saw that the network in Canada that created the show added audio description. The episodes were put on AMI TV a network exclusively for the blind!

I really really want to know more about this and am doing research along with my sidekick Robbie!

We did find out that Netflix has made a sequil show Degrassi next class. It has audio description. I watched one episode and it was awesome! I loved hearing about how this girl wanted to impress some guy by sticking cotton bading in her pants to make her butt look bigger LOL! Then there were the two guys supposedly over each other who looked into each others eyes and started kissing.

So yeah more drama to come.

Anyway I’d love to hear people’s thoughts on the show especially on any episodes that jump out at you as relating to stuff I normally write about. I plan to review some myself.

Here is a blog by a very awesome degrassi lover! She’s a very critical thinker with a good eye for acting and the overall storylines of episodes.

http://degrassiblog.com/episode-grades/#comment-162964

If people want more links on Degrassi please let me know! And if anyone has info on the audio describe episodes in please let me too! Hoping to get them on Netflix.

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learning asl as a blind person

Hi everyone,

So a project for me off and on has been learning sign language. I guess I’m probably a bit over fascinated with deaf people and how they communicate in the way sighted people are with how blind people read and braille and stuff. It’s probably hard for people with these opposing disabilities to really understand the others experience. Like I’m sure a deaf person couldn’t imagine what it would be like to not be able to see even more than a sighted person who’s hearing would, because they depend on sight so much. And I as a blind person can’t imagine not being able to hear or talk with my voice because those things are so important for me in how I live.

Then there are those that are deaf and blind. I’ve never known any deaf blind people and would love any thoughts about dealing with these two issues day to day to day.

In addition to all that we have three deaf residents in our building. Ever the advocate for people with additional disabilities along with mental illness, I really want to understand how things are for them. If like myself and other blind people I know they have additional challenges with for example getting services, getting people to realize they don’t have depression due to their disability ETC. It’s frustrating not to be able to communicate with them. It’s even more frustrating that these three have been there for years and years and very few staff have bothered to learn even basic signing. The clinical director is pretty good at signing and is very into the idea that so long as the person doesn’t come in thinking that this building is specifically for the deaf/ blind or whatever, if their issues fit what is treated here they get the same right to come here as anyone else. So anyway he’s said that if someone else came along who was deaf, or blind he’d take them if they met criteria. Besides him though like I said very few seem interested. This kills me because if I were deaf I would be constantly writing to people and being like you guys need to learn to sign right now!

But it seems the three are used to it. They’re also very different in terms of their hearing issues. One signs but also reads lips and speaks quite articulately if loudly. She gets the unfortunate task of interpreting for the other two. This other girl who’s in her thirties. She signs mostly. I think she also reads lips. She can say some words but not very clearly at all. She’s the one I want to know the most because most of the time she seems like a really nice person. The clinical director here does know the importants of getting someone in who speaks ASL as a caseworker. The first one he got was amazing! He was so nice and compassionate and plain awesome as a caseworker firstly. Then he had spent years as an interpreter and actually went on to do that. Anyway this girl once he got there was wanting the two of them to go around and play this card game with questions about yourself. It was nice to just talk with her and get a sense of per personality. She admits to having a temper which is obvious at times. I learned that she’s very religious but respects others differences. A couple of times outside of that interaction she’d come over and take my hand or hug me. Once after the clinical director told her what room I was in she took me upstairs. I so wanted to talk to her.

It really made me think about people who were deaf. I hadn’t really thought much about them before. I thought deaf people maybe had it easier because there’s so much on tv like closed captioning and stuff. But then I’ve seen so many people just in this building who don’t care at all about signing or who make fun of the way they talk and it’s just sad.

Because of that and as a kind of statement to the lazy sighted people who won’t take the time to learn it I’ve decided to learn to sign.

My bestist friend Robbie went to a school for the deaf and blind. So he’s been around a lot of deaf people and understands things as much as a hearing person can. Jess and I are doing most of the learning though. We tried once and stopped because she wasn’t very patient. But now we’re trying again. I have a hard time with letters. So I decided to start with words. Just start learning what I want to say without going from complete scratch. Probably not the best way to learn but yeah.

So here’s my video.

https://www.youtube.com/watch?v=7WtXM0Wnfdk

Robert captioned it for me.

I’m excited about this. I hope I’ll make new friends. It’s also an alternative way to communicate secretly like with Jess or Robert or anyone else who knows it or when I’m too overwhelmed to talk. I think a blind person learning a visual language is just really cool.

So any thoughts about any of this is welcome!

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Doing better

Hi everyone,

Just wanted to send a small update. That I’m doing better than when I last wrote. The scheduling thing with my online volunteering has calmed down. It’s not all straightened out but hopefully will be by tomorrow/ early next week.

I only have a week til my NRS interview and am just gonna try and relax and not think about it so much. I do still really wish I could talk with anyone who’s volunteered to hear what it’s like and not off the website you know a personal conversation.

I feel relaxed. I had two naps today which I sometimes do. Jess made me go for a walk with Edith. It was nice fresh air I guess. It’s always good talking with her. Because she’s very perky and open about her emotions. I like people who are animated and genuine. I’m hoping she has a good trip as she’s going on vacation to California for a week. And that hopefully we’ll have no crisis while she’s gone. The PRC she left me with is monica. She’s on our floor and kind I guess. I don’t know her well at all. I honestly don’t talk to any PRCS I don’t know except to say hi in passing. I have to really feel like a person is gonna understand me before opening up emotionally at all. So like I said I’m hoping there will be no issue to have to bring in a caseworker.

That’s about it.

Hoping for a relaxing week.

Check out my blog

matterstosam.wordpress.com

Want Psychology today to add consumer review feature to their therapist directory? Sign this pitition!

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results of psychiatrist appointment last week

Hi everyone,

Just remembered I forgot to let you all know how the appointment that I had like a night’s notice about turned out!

First of all thanks to our extremely small like feels like a closet Dr. office here at Albany care it was extremely crowded as a ton of people were waiting to see her. Some very stupid people were sitting there since seven in the morning even though the office manager type person paged and said it wouldn’t be til ten! There are few seats and when you crowd a bunch of people with active symptoms together it’s generally a disaster.

My caseworker was with me and we tried to talk about whatever to distract from the chaos which gets on my anxiety. But as it got to be forty minutes in I got worse and worse as did a lot of others. By the time I got in to see her I was extremely upset and just wanted to wait til next time. It’s the first time she’s seen me crying/ not cooperating as in not wanting to talk and anxious ETC. Sure she wrote a lot of notes! Caseworker explained about the zaps as did I. She did ask if there was a delay in getting any of my meds that past week and I said no. As she even knows the pharmacy delivering meds here often is delayed in filling your script. Which makes no sense in a psych facility but ya know. As in I haven’t gotten my morning dose of lamyctol for two days. But yeah for that no it wasn’t the case.

She said there are hundreds of side-effects to meds and psychiatrists don’t know what causes all of them. She said it’s most commonly seen the zaps, in patients coming off meds. But I’m not so it’s weird. She said she’s heard from patient stories that taking an antacid like tums would help! I’m very suspicious as I’ve never heard of this and don’t see how the two are linked at all. Though I was given priloseck when I was first diagnosed with depression/ anxiety at eighteen because the anxiety/ out of whack chemistry was producing extra acid making it uncomfortable to eat and feel like gagging. However I don’t see how this connects to brain activity.

She wrote an order for PRN antacid. I’ve never taken tums only the priloseck and hope it doesn’t taste terrible. Edith says when I’m in the grip of the zaps I’d rather have tasting bad meds than them but like I said who knows if it will do anything.

I’m hoping I won’t get them for awhile.

So it will be another three months til I see her again. Given this is a psych facility you’d think you’d see your psychiatrist once a month. Luckily she’s easy to get ahold of and caseworkers/ nurses can contact supposedly 24/7. And I guess if needed you can go once a month. It just doesn’t make sense to me that it’s required to see your medical doctor once a month even when you absolutely don’t need to but not for the psych.

At least I have the best of the bunch here. Fyazz is pretty good. Thoughts on the antacid theory?

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very draining day

Today was an extremely draining day.

They’ve brought in some new technology around scheduling with my online volunteer job. In my opinion things were fine but they wanted to upgrade. So it’s been absolutely crazy for everyone this week figuring this new system out. Everyone’s shifts got all over the place with people getting new shifts and not finding things that worked.

My screen reader NVDA is not compatible to the system at all and the staff were understandably so busy with everything as everyone was having issues it took til just about an hour ago to get something nailed down. Meanwhile I and it seemed many others were unsure they could volunteer and everyone was anxious. I really dislike change especially when something was working fine beforehand. To me it isn’t worth all the upheaval.

But anyway things are sort of ok. But not totally and it’s been a rollercoaster for me with this issue. I’ve come so far doing this job and to not have it would be very upsetting and probably set me back emotionally.

Then some of my lamyctol has not come in. Sometimes a prescription ends and and the pharmacy has a delay in refilling. At a psychiatric facility you would think having meds pretty much exactly on time would be a top priority. Again on the subject of change the first pharmacy they had was fine when I came in. They changed to this new one and while they’re not at the rough start they were at things aren’t exactly peachy and these delays are taken in stide even by the psychiatrists. The good thing is I do have my night dose of lamyctol just not the morning one.

Along the lines of my screen reader not cooperating with the online platform I’m freaking out about the same thing happening when I try to do thlocal hotline. I would hate to go out there only to find out things don’t work because of technology.

Aso my caseworker is going on vacation for a week. It makes me want to withdraw and just not talk to anyone. I’m certainly not sharing anything with another PRC who doesn’t understand me. Edith sticks to me like glue even when I don’t want her there.

She’ll be here over the weekend and Monday. I don’t even miss her really just another down thing on the list.

So yeah just having a hard time. Took two naps and that helped.

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so glad a family in need found my blog post on albany care

I was very touched yesterday to hear from a local family who read my blog when searching for a psychiatric living situation for their young adult child. I was able to connect with them and give them an honest assessment of ins and outs of the place answer questions and direct them to key staff. They had their visit today and I’ve been thinking of them all day and hoping things went well. Whether this person is able to move in or not I still am so happy I made this impact.

So thank you for having the courage to reach out to me! Our conversation really opened up a discussion about residents that are functionally/ emotionally able to being like peer mentors for new residents, and prospective families. The mom said there’s nothing more reassuring than talking to someone who lives there.

So if you’re looking for a residential situation for yourself a family member or friend please reach out to me.

Nelsonsam68

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