My New Mac: First Impressions

One of Mama’s Losin’ It’s prompts for this week is to write about your most recent purchase. I don’t know what counts as a purchase, but I really want to write about my Mac, which I bought two weeks ago.

I started writing this post on my new Mac. It’s new to me, but it’s the MacBook Air 2017, so I didn’t expect it to be all that advanced. I also didn’t expect to use it much for the first while. I mean, even after fully installing my current Windows PC in July of 2014, it took me two weeks before I started using it and only because I had spilled tea over my old one. Each new version of Windows required me a lot of learning, so I expected that even more with my Mac.

My husband installed it last Saturday evening. I started exploring it and, within an hour, my husband asked whether I could browse the Internet yet. Safari is one of the clunkier apps on the Mac, so I wasn’t expecting it to work. That evening though, I was reading blogs and commenting using my WordPress account. Apparently, I had figured out some basic web browsing on Safari.

The next day, I explored the Mac further and was blissfully unaware of my incompetence with it. That awareness came Monday, when I couldn’t figure out Facebook or WordPress.com. In the evening, my husband tried to make the mail app work with my self-hosted E-mail account (is that what it’s called?). IMAP wouldn’t work, which caused me to melt down. I said I was going to buy a Windows PC the next day and go back to that. Thankfully, my husband talked me out of making any impulsive decisions.

The last few days have been better. I can more or less work any website that isn’t too chaotic, including Facebook. I finally figured out WordPress yesterday too, although I still prefer to type my blog posts on the iPhone.

Today, I spent my time on the Mac figuring out Apple Music. I have a Spotify premium subscription, but for some reason (them being competitors, I guess), Spotify isn’t available in the app store, or at least I couldn’t find it. I didn’t use to like iTunes on the PC, but so far, Apple Music is good on both iPhone and Mac.

I also decided to put my documents on my Mac. I rarely use offline documents nowadays, but I don’t want to lose them either. I have diaries dating back to like 1999 in my documents. Unfortunately, I couldn’t find Dropbox in the app store either, so I had to retrieve my docs from my external hard drive. That’s a lot easier anyway.

I haven’t installed many apps yet. The only apps I installed so far, that aren’t recommended by Apple, are Kindle and ReadKit. I am not using either yet, because Kindle has a visual-only CAPTCHA to register and I would like to sync ReadKit with a feed reader that also syncs to the app I use on my phone. The most sensible choice for that is Feedly, but I have over 100 feeds I’m subscribed to and then a subscription costs like $65 a year. Maybe I could try Feedly with just a few feeds though to see if it works well with ReadKit and if I can use ReadKit like I want to.

As regular readers know, I am blind and so I use a screen reader. One of the main reasons I chose a Mac over another PC, is that the Mac has a built-in screen reader called VoiceOver. I had read up a lot about accessibility before buying the Mac, but there wasn’t much out there about Braille displays, which I use most of the time. Thankfully though, except for the login screen, everything works fine with my Focus Braille display.

There are also a ton of keyboard shortcuts, both general and VoiceOver-based. I love that, but it is a learning curve. For example, when copying my files from my external hard drive to my Mac, I kept trying to press Enter to open the folders and then realized I had to press Command+O. I also keep trying to press Shift+F10 to open a context menu. I don’t know whether there isn’t such a thing or I haven’t figured it out yet.

This review may seem a bit negative, but it isn’t intended as such. Overall, my Mac is definitely useful. I’m pretty sure I’ll get used to it eventually.

Mama’s Losin’ It

#IWSG: Creative Outlets Besides Writing

IWSG

I have a ton of things I want to write about, but somehow I can’t get myself to actually write. I started trying to use my new Mac Saturday evening. So far, it works but is still a bit hard to use. The WordPress app for Mac isn’t available in the app store, so it is a pain to install. I’m just using my phone now rather than WordPress.com in Safari, because at least I know how to work this.

It’s time again for our Insecure Writer’s Support Group or #IWSG check-in. This month’s question is about creative outlets other than writing.

I must say I”m not terribly creative. I don’t do any artsy things and am no good at music either. No, not all blind people are musically talented! I tried my hand at learning to play the keyboards and guitar for a bit, but didn’t like either. Granted, my guitar lessons were while I was at summer camp in Russia and the instructor spoke Russian and English only. This was before I knew English, so it took me half an hour to figure out what he meant by the “strings”.

If we expand creativity a bit to include crafts, I have tried a ton of them. I started out trying to make cards in 2012, not realizing how inaccessible this craft is to blind people. I should’ve known, since the blindness agency used to offer card making courses but specifically to the partially sighted only.

Then I tried mixed media, which was similarly inaccessible. Then came polymer clay, which should be doable but not by me. I tried to learn to crochet and loom knit too.

Lastly, I tried soap and bath and body product making. I still love that craft and would someday like to pick it up again, but I can’t do it independently. This is when I realized that the problem may not be exclusively with my blindness, but my cerebral palsy affecting my fine motor skills too.

So in short, no, I don’t do any creative things other than write. But I’d love to learn.

Gratitude List (February 2, 2019) #TToT

I didn’t write much this past week. Not because I didn’t have anything to share, but because somehow the words wouldn’t make it onto the page. I had an extremely eventful week, which I will share more about later and which I already shared a bit about last Wednesday. Today, I’m going to write a gratitude list for the past week. As always, I’m linking up with #TToT.

1. My shoulder pain being almost over. Like I said two weeks ago, I suffered a small collarbone fracture. Yesterday was the last day of my strong painkillers. I had wanted to quit them earlier, but my husband said not to be too hard on myself. Today though, I only took two paracetamol and am more or less fine. Granted, I didn’t do a lot of repetitive work, so after I’ve finished this post, it’ll probably hurt more.

2. Being able to exercise again. I went on the elliptical for a total of 35 minutes yesterday. I did take breaks, but I felt my legs more than the injured arm.

3. Sensory activities. I already shared last Wednesday about the living facility I might go into that has lots of sensory supplies. Seeing this inspired me to explore the sensory equipment at day activities more. I found a large cylinder which you can roll on. I also spent time in the small (almost too small for my overweight body, but not yet) indoors cocoon swing.

4. Buying my Macbook. I haven’t unboxed it yet, but I’m glad I finally put one foot in front of the other and bought it.

5. Stuffed animals. Today, I experienced severe overload and had a meltdown while at my in-laws. My mother-in-law brought me a huge collection of Disney soft toys and other stuffed animals. I loved them.

6. Sleep. I didn’t sleep well early in the week. Thankfully, towards the end of the week, I slept better.

7. Getting some delicious treats for myself on Thursday. Some were healthy too, like blueberries. Some were not (liquorice!) but I loved them nonetheless.

8. The day activities staff treating us to some special food on Friday. She decided to spoil us, so for lunch on Friday, we had croissants and some salty crackers with cream cheese and olives. I went to the marketplace to buy them with this staff.

9. My husband. I need to be extra grateful for him because this past week has been stressful.

10. My support coordinator, whom I saw four times this week.

What have you been grateful for this past week?

Starting My Journey Towards (Hopefully) Going Into Long-Term Care

Last Sunday, my husband asked me whether I had any interesting events this week. I said no, I would just go to day activities and that’s it. Last week, the consultant psychologist on my case called the long-term care funding agency to ask how far they are with processing my application. It’d been sitting with them since Dec 20 and they formally need to finish the process within six to eight weeks. They said it’s on the roll, but that they’d been busy because of the holidays.

Last Thursday, my support coordinator asked whether I wanted to start looking at group homes now while we’re waiting for the funding to hopefully be approved. She had a particular group home in mind which has had an available room for months. I said okay.

She called the group home’s manager and was told I’m welcome to take a tour but to contact the home’s coordinator. Well, to make a long story short, I was invited to the tour yesterday.

This is a home for people with profound intellectual and multiple disabilities. The manager stressed that the current residents all function at a mental age of six months or so. Now I find the whole concept of mental age confusing, probably because I myself function much higher intellectually than emotionally. I mean, obviously I assumed these people can’t talk, but well. I don’t mind.

I drove by paratransit taxi to the home yesterday. It is in a city about 30 minutes from my home. I was told to ring the doorbell if I could find it and else to wait for my support coordinator to arrive. From the need to ring the doorbell, I assumed it’s a locked home. It is. I had already read up on it though and had read that the home has a fenced yard. Otherwise, I wouldn’t have liked a locked place. Like, there’s one my support coordinator has mentioned too in the city my day activities is in too, but that’s on the third floor of a nursing home building. I’d feel like I was in a prison then.

I asked the home’s coordinator why this is a locked home, since I assumed all residents are in wheelchairs. Turns out some can walk and may elope. So do I when in a meltdown.

We started the tour in one of the two living rooms. It had a lovely sensory atmosphere. The coordinator asked, since I arrived shortly past noon, whether I’d had lunch. I hadn’t, so she offered me a slice of bread. I liked that.

Once my support coordinator arrived, we talked about my care needs. I function emotionally at a really low level, which is why my support coordinator had believed this place might be for me. The home’s coordinator understood and liked the opportunity to get to know me.

In the home, you have your own bedroom. You share the bathroom with one other resident. Since most clients use diapers, not all bathrooms have a toilet, but the one adjacent to the available room does. Then there’s a large sensory bathroom with a tub. I loved it. They also have sensory materials to use in the living room or an individual resident’s room.

I didn’t get to tour the yard, but was told there are lots of swings in it, including a cocoon swing like the one I love at day activities. They also have one they can use indoors in the living room.

As for the rules, there are no strict visiting hours. Family are actively involved in the residents’ life. They also have volunteers who go for walks with the residents almost each evening. Sometimes, volunteers cook for the residents. When they don’t, the residents get readymade meals like the ones I got in the mental institution. Once a week, a music therapist comes to the home. It’s a facility which offers treatment, so you get the opportunity for physical, occupational or speech therapy if needed. There’s also an intellectual disability physician and a psychologist involved.

During the night, a staff sleeps in an upstairs room. All residents’ bedrooms are downstairs and there’s no need to go upstairs to find the night staff. Rather, they use technology to listen for suspicious noises in the bedrooms, but the coordinator did say this could be turned off in my bedroom if I were able to phone the night staff myself.

If I get funding for long-term care, it needs to be tweaked somehow if I want to live at this place, because my funding would be based on blindness and this is an intellectual disability facility. Then, the manager, physician, psychologist and all need to agree that I’m the right fit. This includes a risk assessment. The coordinator says this is in case of things like severe epilepsy, but my husband told me to mention elopement.

Of course, I feel internally conflicted as to whether I want this to work out. I’m excited about the facility itself, but still feel like I shouldn’t need this much care. I’m afraid the funding authority is going to agree here.

Once I’d returned home, my support coordinator called me. She had heard from the funding authority physician. The consultant psychologist had already explained my needs, but she wants to see me anyway. That appt is going to be tomorrow at 10AM. I assume this is to validate I in fact have the needs the application says I do. Then, the physician will write a report for the funding decision-maker, I guess.

My support coordinator is going on vacation on Feb 7 and won’t be back till the 25th. She said though that, if my funding gets approved while she’s on vacation and I want to start the process of applying at this living facility, I can do so with the care consultant and my support worker.

PoCoLo

Determined

I want to write so bad, but my shoulder is still hurting. Not as badly as it was, but there’s some kind of bulge on it that keeps acting up whenever I lift my arm up even slightly, as I do for typing. I am determined to beat this stupid thing though.

Determined. That’s Fandango’s word for FOWC today. I rarely participate in these one-word challenges, although I’m subscribed to most blogs that offer them, including Fandango’s. However, today’s word struck a chord.

I told my named support worker at day activities about my crisis of 2007. I realize I’ve never shared my life story on here yet, so some readers will not know what I’m talking about. Let me explain. In 2007, I was living independently and going to university. I had been forced to go that route after essentially being kicked out of an independence training home that I had attended because I’m blind. I had been diagnosed with autism just a few months prior. Neither autism nor blindness alone should keep someone from living independently and going to university, but the combination did cause me a lot of trouble. Within three months, I was in a suicidal crisis. I had to be admitted to the psych ward. Not because I wanted to per se, but because that was what I needed at that point.

Fast forward 9 1/2 years and I was kicked out of the psych unit again. Yes, I stayed in a psychiatric hospital for 9 1/2 years. Not because I wanted to, but because no other place wanted me. Those for people with just autism, couldn’t deal with my blindness and vice versa. There are places for people who are blind with multiple disabilities, but most of the clients going there have some type of intellectual disability. That was obviously not where I belong. Or was it?

I’ve now been living independently with my husband since May of 2017. Despite lots of support, it’s a struggle. I am surviving, but I’m barely living.

So I decided to apply for long-term care. Which had originally been determined to be best for me by the psychiatrist who admitted me to hospital in 2007. I am determineed that, if we stop looking at just my labels and start looking at me, we’ll find someplace for me.

Then again, is this determination? Am I not essentially underachieving if I admit I need 24-hour care? Or am I actually determined to follow my own path to happiness and the best possible quality of life?

Book Review: And She Was by Jessica Verdi

Man, #JusJoJan is getting nowhere. That is, I’ve been jotting stuff down everyday, but none of it was blog-worthy. I felt a little uninspired. Then, reading a book seemed more interesting than writing a blog post. I chose the book called And She Was by Jessica Verdi. Then, once I finished the book, I wanted to write a review for my blog, but didn’t get round to doing it. Then on Thursday, I fell and suffered a small but painful collarbone fracture. Now it’s Monday and typing with that hand still hurts like crazy, but I so badly want to finally write the review. Here goes.

Synopsis

Dara’s lived a sheltered life with her single mom, Mellie. Now, at eighteen, she’s dreaming of more. When Dara digs up her never-before-seen birth certificate, her world implodes. Why are two strangers listed as her parents?

Dara confronts her mother, and is stunned by what she learns: Mellie is transgender. The unfamiliar name listed under “father”? That’s Mellie. She transitioned when Dara was a baby, after Dara’s birth mother died. She changed her name, started over.

But Dara still has more questions than answers. Reeling, she sets off on an impromptu road trip with her best guy friend, Sam, in tow. She is determined to find the extended family she’s never even met. What she does discover — and what her mother reveals, piece by piece, over emails — will challenge and change Dara more than she can imagine.

This is a gorgeous, timely, and essential novel about the importance of being our true selves. The backmatter includes an author’s note and resources for readers.

My Review

I already started reading this book a month or two ago. It felt a little slow-moving at first. However, once I picked up the book where I left off again last week, it was really good.

At the beginning of the book, you get to empathize mostly with Dara. This may be one reason people consider the book transphobic, since Dara first decides that her mother’s transition is selfish. Throufh Mellie’s E-mails to her though, you get to understand her perspective too. It takes a long time for Dara to understand Mellie’s point of view and, as such, it takes the reader some time too.

All characters in the book are really well-developed. With some, like the Pembrokes – the grandparents Dara meets -, I got an uneasy inkling of what was coming when they were first introduced. Still, their character was really well-painted.

Some people have pointed out that Mellie is constantly misgendered by the Pembrokes and some others. They feel this is negative. It is, of course, but it serves to illustrate these people’s character. Nowhere is the misgendering condoned by Dara.

There weren’t many truly surprising twists and turns in the book, but the plot wasn’t predictable either. Overall, I liked it. I got stuck on some details, like how could a trans person change their legal name without bottom surgery (this is not possible here), but I assume Verdi did her research.

Overall, I really liked the book. I am cisgender, so cannot say for sure whether this book isn’t transphobic. However, even though some characters are, this is probably real life for trans people everyday, sad as it may be.

Book Details

Title: And She Was
Author: Jessica Verdi
Publisher: Scholastic Inc.
Publication Date: March 27, 2018

Gratitude List (January 18, 2019) #TToT

This week is truly not the best one and that’s a huge understatement. I felt a little lost early in the week. I tried to exercise in order to make myself feel better. This was somewhat of a success. Then yesterday I fell and suffered a small fracture in my left collarbone. Nonetheless, I am going to attempt a short gratitude list. As always, I’m linking up with #TToT.

1. Swimming on Tuesday. It was the first time in six weeks that I went swimming again. I was a little panicked at first, but it went well eventually.

2. My mother-in-law. On Wednesday, my support coordinator had to cancel her visit to me at the last minute, but thankfully, my mother-in-law could pick me up. I had fun eating with my in-laws and my MIL’s niece, who temporarily lives with them.

3. My support staff. My support coordinator was kind enough to call me back as soon as she could to explain why she had to cancel our appt. She offered to come by two times next week.

Also, like I said, I fell yesterday. I was very dizzy from the pain at first. Nonetheless, I thought little of it. After an hour though, I was still in a lot of pain, so decided to call the doctor’s office. His assistant advised me to come see the doctor, but the GP surgery is in the next town, so I needed transportation. My mother-in-law couldn’t leave home and advised me to call a taxi. I didn’t know how to do that, so called my support worker, who jumped in the car and drove to me. She went to the doctor with me.

4. Painkillers. It turned out I had a small collarbone fracture. It wasn’t so bad that I needed a sling or whatever, but the doctor did give me strong painkillers. This was a little hard to figure out, since I take a lot of other medications with which pain meds might interact. I just took my third dose of the pain medicine about two hours ago, since I can only take it twice a day. I’m still in some pain, but it is bearable if I don’t put too much pressure on my arm. This does mean typing with my left hand for a long while, such as typing up this blog post, is a struggle.

5. Candy. I treated myself to candy today. I ate it all already. We also had French fries again. Now I am stuffed. However, it felt good indulging into some comfort food.

6. Reading. I was very much into reading some fiction again early this week. I usually read non-fiction, but enjoy young adult fiction at times. I had started reading the book I finished this week already a few months ago, but somehow moved through it quickly now. It is called And She Was by Jessica Verdi. I have made a start to a review, which I will publish soon.

What have you been grateful for?

Sorry Not Sorry

Today I am not sorry I suffer with mental health issues. I didn’t choose them, no matter what some people think. I don’t necessarily have a bad attitude – and when I do, it has nothing to do with my mental illnesses.

Today, I’m not sorry I am a trauma survivor. I didn’t choose to endure the traumas I endured. These traumas and the resulting mental health symptoms do not make me weak. They do not make me not resilient. People can be resilient and suffer from mental health issues or trauma-related symptoms nonetheless.

Some people choose to believe that the fact that I don’t live up to my intellectual potential, means I’m not resilient. They reason that, if I were persistent enough, I would have finished university and had a job by now. They also judge my lack of persistence in these areas as a sign of a bad attitude.

Today, I’m not sorry I live with multiple disabilities. I don’t care whether you consider these disabilities valid or not. The people who judge me, think I use my disabilities as an excuse not to fulfill their expectations of me. They don’t realize that it’s my life and I have absolutely zero obligation to fulfill their dreams for me. No, not even when these people are my parents. I have no obligation to prove I am worthy of life.

People who don’t know me well commonly assume I must be very resilient for the mere fact that I’m alive. I didn’t use to like this attitude either, but then I read today’s post by carol anne, which inspired this post. Both of us were born prematurely. Both of us suffer with lifelong disabilities as a result. Both of us endured childhood trauma. Doesn’t the fact that we survived and haven’t succumbed, mean we’re pretty resilient? I think it does. We’re badass!

Loss #WotW

This was truly a mixed week. I wanted to write a gratitude list for it, and maybe I will do so tonight, but right now I don’t feel like it.

On Monday, I attended day activities as usual. A fellow client, an older man, attended too as usual, but he was very unwell. He had been ill for a long time and the staff had feared for his life on a few prior occasions. I attended day activities during the morning only and I worried in the afternoon that he’d die soon.

On Tuesday, the man wasn’t at day activities. I heard the staff talk about his group home staff having had a scare in the morning, but he was still alive. In the afternoon, I heard them talking about palliative care. By late afternoon, when us clients werre ready to leave, I heard that he’d passed. For those who don’t know, my day activities group is for people with severe intellectual disabilities, so i’m the only one who understands the conversations staff have among themselves basically.

On Wednesday, the other clients were told that this man had died. Most still don’t fully understand, but some have made beautiful drawings in his memory that will be given to his family on Monday. Near the center’s front door is a table with (electric) candles, a picture of the man and all the drawings. I decided to make a butterfly soap for it. I made it on Wednesday afternoon with my support coordinator. It turned out great, a beautiful lavender blue with lavender fragrance oil.

On Thursday, I was off from day activities and I spent the morning in bed. It didn’t really feel good, but I had nothing planned for the day except for horseback riding at 4:30PM. That was a great experience. I rode Aagje, a fjord horse with long hair (which is unusual for this breed).

Today, I showed my day activities staff the butterfly soap I’d made and placed it on the client’s remembrance table. We tried to do day activities as usual as much as possible. We walked to the marketplace in the morning. In the afternoon, when I went for a short walk with the day activities coordinator, I told her I wanted to ask a rude question. I wanted to ask whether, now that this other client had died, I could take his place at day activities on Thursdays. I still feel pretty awkward having asked this, but she understood that, if I waited a while, they might’ve gotten a new application. I E-mailed my support coordinator on this issue too.

Early this week, I got an E-mail from my support coordinator forwarding the termination letter from the Center for Consultation and Expertise. I didn’t understand this, as the consultant had offered to be my contact for the long-term care funding agency. Apparently, she still is somehow. I really hope I hear from that agency soon. My support coordinator did E-mail the local authority’s social consultant, who is in charge of my community care funding, to extend my funding for two months as we wait for long-term care to kick in.

Right now I feel… numb? I was a bit dissociated this afternoon, as my day activities staff were discusing clients’ severe challenging behaviors (not current fellow clients of mine). I remembered my time on the locked psychiatric unit, where I was often threatened with seclusion for problem behaviors and was in fact secluded or restrained a few times. It felt good disclosing this to my staff, but I did feel a bit awkward.

Now I’m waiting for my husband to get home from work. He’s going to bring French fries and snacks. I look forward to that.

I am linking up with Word of the Week. I choose “loss” as my word of the week in my fellow client’s memory.

My 2019 Word of the Year

It feels like forever since I last wrote, even though that was only last Friday. I don’t know whether that’s a good thing or a bad thing. I’ve been wanting to write a lot over the week-end and did in fact write some each day. Just not for my blog. Today, I am going to write a post I’ve been dreading writing, like each year. It is the post in which I announce my word for the year.

Now why is that so dreadful? Because I have a lot of trouble, and that seems to increase each year, choosing a word of the year. I feel like I need to focus on my word of the year, but then again that doesn’t seem to work. I mean, if life is a bunch of choices, focusing on my word for the year should make it happen. That just isn’t how it works, and I’m still undecided as to whether that’s because I’ve not focused on my word for the year enough or because of things outside of my control.

As such, this year, I am going to decide on a word that should be relatively easy to focus on. It shouldn’t be like a heavy weight on my shoulder, like “progress” or “be” were when I chose those words in previous years.

With no further ado, here’s my word for the year 2019: CHERISH.

The word “cherish” was suggested to me by someone in a trauma self-help group. I had wanted to choose words like “self-care” or “nurture”, except that I’d already had those as words of the year previously.

In the year 2019, I want to cherish myself. This means, according to the dictionary, to hold dear, to show loving affection. I want to be kind and loving towards myself. It also means something akin to “hold onto”. In this respect, I want to hold onto life. Because of that, I hope this year I won’t be acting too impulsively.

I also want to cherish the people who are important to me, most notably my husband. In the process of applying for long-term care, it’s sometimes felt as though I was abandoning him. That isn’t my intention. I want to remain with my husband for life. As such, if and when I go into supported housing, I want to make the most out of the time I’m going to spend with my husband. Until this happens, I’ll also hopefully be able to show lots of affection towards him.

What is your word of the year?