Monthly Archives: February 2019

Book Review: Inside the O’Briens by Lisa Genova

I first heard of Lisa Genova in 2015, when Still Alice was made into a movie. I never saw the movie, but got the book as soon as I could. It sounded intriguing. However, I started the book but never got far into it. I got Left Neglected sometime in 2017, but never finished that either. I still intend to finish both. Then late last year, I heard of Every Note Played. I never even got that book, but it got me interested in checking out Lisa Genova again. This is how I found Inside the O’Briens. I was impressed. I had read a young adult novel called Rules for 50/50 Chances, about a girl whose mother has Huntington’s Disease, a few years back. That book had been grippling and hard to put down. I don’t know what it is about Huntington’s over Alzheimer’s or ALS that drew me to this book. I read this book and this time, I actually finished it. Here are my thoughts.

Synopsis

Joe O’Brien is a forty-four-year-old police officer from the Irish Catholic neighborhood of Charlestown, Massachusetts. A devoted husband, proud father of four children in their twenties, and respected officer, Joe begins experiencing bouts of disorganized thinking, uncharacteristic temper outbursts, and strange, involuntary movements. He initially attributes these episodes to the stress of his job, but as these symptoms worsen, he agrees to see a neurologist and is handed a diagnosis that will change his and his family’s lives forever: Huntington’s Disease.

Huntington’s is a lethal neurodegenerative disease with no treatment and no cure. Each of Joe’s four children has a 50 percent chance of inheriting their father’s disease, and a simple blood test can reveal their genetic fate. While watching her potential future in her father’s escalating symptoms, twenty-one-year-old daughter Katie struggles with the questions this test imposes on her young adult life. Does she want to know? What if she’s gene positive? Can she live with the constant anxiety of not knowing?

My Review

The book starts off with a rather grippling scene in which then 36-year-old Joe recognizes his mother in himself. Then, the book quickly skips over the next seven years and details Joe’s work as a police officer. As a reader, I got clues that something was amiss from the beginning and kept wondering when Joe would finally see it himself. Of course, I knew the reason from the book synopsis and Joe had probably never heard of Huntington’s. When Joe finally causes a riot control drill to be prolonged due to his inability to stay in line, his friend and coworker gets his wife involved. This is when they finally go to the doctor.

Once Joe finds out he has Huntington’s Disease, his four children face the question of whether to get tested for the gene themselves. They each have a 50/50 chance of having the gene too, in which case they’ll get the disease. I knew as much from Rules for 50/50 Chances, which centered on this chance. It was very intriguing to follow each child’s steps towards accepting their father’s fate and making a choice about knowing or not knowing their own.

Genova chooses to focus her attention on Katie, Joe’s youngest daughter. She is only 21 and as such, not much older than the main character in Rules for 50/50 Chances. However, Inside the O’Briens is clearly a novel intended for adults and not young people. This is clear when reading from Katie’s perspective too. I must say here that I generally prefer young adult to mature fiction, but this was truly a great read. It’s also not really fair to compare this book to a young adult book by a different author when their only similarity is Huntington’s.

I loved the detail with which Genova describes the scenes and her characters. Each character is truly well-rounded in a way I don’t see often. This book is about so much more than Huntington’s. It’s also about police work, because Joe is a police officer. That may’ve been another thing drawing me into this book rather than Genova’s other books: I just so love learning about cops’ lives.

Book Details

Title: Inside the O’Briens
Author: Lisa Genova
Publisher: Gallery Books
Publication Date: April 7, 2015

Read With Me

Long-Term Care Assessment

I’ve been wanting to write much more lately, but somehow, I can’t get myself to actually sit down and write. I remember originally posting twice a day almost everyday when I started this blog, and now I’m barely writing twice a week.

I still need to update you all on the meeting with the long-term care funding person. She wasn’t the physician but the one actually making the decision on funding. The physician may still need to contact my psychiatrist in order to advise this person on funding.

She asked a lot about my level of independence in various situations. Like, she asked whether I can cook or clean the house. I was expecting her to ask about much more basic self-care skills like showering. She did ask about those too. I don’t know whether it’s a good thing or bad that she didn’t go into that much detail about my basic self-care. I mean, those are things I at least try to do myself, even though I fail miserably at them. I thought it should be obvious that I can’t cook or clean the house.

The funding person asked multiple times whether I’d had independence training. I couldn’t go into too much detail about that, but I did make it clear that I got tons of it. I also think I explained that the skills didn’t generalize to a new situation, such as living independently.

The funding person said she may want me to get some type of test for emotional development. There is a questionnaire called SEO-R that I think support staff or others involved with the client fill out to determine at what level a client is emotionally. I googled the descriptions of the different developmental stages. In some respects, I would really be like a 6-month-old, while in others, I’m closer to 7 years. I didn’t recognize myself in the most advanced stage, which corresponds to children age 7 to 12. There is probably a stage for adolescents too, but this scale was originally intended for people with mild intellectual disability, who by definition don’t reach this stage. I know the whole concept of mental or emotional age is ableist, but as long as it’s not used to actually infantilize clients, I think there is some use to it.

The intent of this scale being administered in my case is to maybe qualify me for an intellectual disability care profile. The funding person wasn’t impressed with my IQ anyway. I mean, it was measured as being 154 some twenty years ago, but was measured as at least 35 points lower in 2017 and with a ton of discrepancies. Like, I scored high on calculus, but slightly below average on comprehension. Besides, I didn’t say this, but only the verbal part of the IQ test could be administered because of my blindness. I liked it that this person didn’t see me as some sort of genius.

At the end, my support coordinator tried to explain what we’re going to do with the funding if we get it. She explained about the living facility we visited last week. I got a little unquiet at this point, so the funding person offered to talk to my support coordinator on the phone later. She never did. I don’t know whether that’s a bad thing or not.

I’ve been really stressed out these past few days. I dream almost every night about possible outcomes of this assessment. Like, will I get funding based on blindness or intellectual disability? Or will the funding people decide mental illness is my primary disability and deny me funding because I need treatment for that first? And if I get funding, will I get into the place I visited last week? I hope I will, but I’m not getting my hopes up too high yet.

Now my support coordinator is on vacation and won’t be back till the 27th. I think the funding decision has to be made by then. My support coordinator asked me to text her when I heard about the decision, so that she can bring cake if I get approved. Again, not getting my hopes up.

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

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?