Haiku: Black Widow

The black widow is
A true seductress until
She eats her husband

This haiku has been on my mind for over a week. I found out about Tanka Tuesday already a while back, but never cared to look up its creator. Last week I did, but it was a prompted week and I couldn’t come up with a poem that matched the theme. That is, spiders may be a Halloween theme, but I wasn’t sure of it. This week though, it’s a poets’ choice week, so I’m jumping at the opportunity and sharing the verse that’s been on my mind all week. Last night, I even came up with a Dutch translation, but it’s not very good. Hope you enjoyed this one.

The Wait Is Over…

Today, V.J.’s Weekly Challenge is all about waiting. It’s an interesting topic, considering that, as I said before, it’s been twelve years this week since I embarked on my journey to finding the right care. The wait is over. On June 4, exactly five months ago today, I was granted long-term care funding. I moved into the care facility on September 23.

It was an extremely long wait. Twelve years is roughly fifteen percent of a person’s lifetime, and they covered almost my entire adult life so far. In other words, I spent most of my adult life waiting. And now it’s over.

And yet, I don’t feel the sense of relief I was sort of expecting to feel. I, after all, hadn’t put my life on hold while waiting for this magical moment. I’m glad I didn’t, as that would’ve meant I didn’t have a husband now. You see, originally, when he told me he was in love with me in January of 2008, I planned on waiting to reciprocate his love until I’d moved into supported housing. I’m glad I didn’t wait.

And yet, my life did seem on hold in other areas for all of these years. I was always in a waiting position at least on some deep, emotional level. And now I can stop waiting and start living. I hope.

Then again, can I truly let go of that paralyzing feeling of apprehension that I’ve carried with me all this time? I still feel like I’m in waiting mode. Hibernation. This long-term care placement still feels temporary to me. Then again, well, guess what, life is temporary. I’d rather get a grip on it than spend the next so many years waiting for some magical miracle that won’t ever happen to make me feel all good.

Lately, I’m constantly reminded of a comment one of my fellow patients on the locked psychiatric unit made in those early days of my hospitalization. I can change my environment all I want, but I’m still me and I need to look to change myself instead.

Tomorrow, I’ll have a review with the behavior specialist and my home and day activities staff. I already discussed with my home staff wanting to get more out of my day than I do now. I came up with the idea of taking my Braille display and external keyboard with me to day activities, so that I can do more stuff on my iPhone than simple dice games and texting. I did this today and unfortunately felt immediately overwhelmed when I tried to read a blog post while a fellow client was making noise playing with macaroni. That almost made me give up and retreat into hibernation mode again. I hope I won’t give up though.

Nuts! #SoCS

I first heard about the details of the Care and Force Act in the Netherlands a few days ago through a fellow mental health advocate. I’d heard of the bill being passed before, but never quite understood or cared what it entailed. Now I know, from both her opposing side and thesupporting side, namely my own long-term care organization.

As it turns out, the Care and Force Act impacts everyone who receives mental health or developmental disabilities services, whether voluntarily or not. Before this law, only those committed involuntarily to a psychiatric hospital, psychogeriatric nursing home or intellectual disability facility, could be subjected to involuntary care. Now, basically everyone who receives (or, I assume, is supposed to receive) care for a mental illness or developmental disability, can be subjected to involuntary care. Yes, even if you live at home. Support staff are allowed by this law to enter someone’s home without their permission and hold them down there, force medications on them, install cameras for monitoring the client, etc.

This all sounds pretty nuts to me. Of course, that’s what said mental health advocate said too. My care facility says that forced care is not allowed unless… and then they go on to list the law’s reasons involuntary care is allowed. This is a long list, including obvious reasons such as self-harm or aggression, but also “endangerment of the person’s development”. Well, WTF?

I understand the well-meaning intentions behind the law. For example, a client with Prader-Willi Syndrome, which makes them eat and drink without inhibition, can be prevented from accessing sources of food or drink. The long-term care facility said in this case (in a flyer by my care organization) they’d decided to disable the client’s bathroom tap so that they cannot drink like 5 liters of water at night. However, quite possibly, this could be affecting people like me who suffer with compulsive overeating. I am sensible in that I try to ask for help in preventing binges, but I mean, I’ve heard clients being told not to enter the kitchen because they eat lots of cookies and are prediabetic. Well, this is physical health, which I understand on at least some level. But isn’t this whole bill meant to make us all conform to the non-disabled standards of “normalcy” whether we want to or not?

And besides, there are huge budget cuts to mental health and disability services, so will this bill not just be used to facilitate lower levels of actually helpful care?

For example, I could in a worst-case scenario be confined to my bed at night so that I have fewer reasons to bother the night staff when I go to bed later than most other clients. Or I could be banned from using Facebook or the Internet altogether during certain times of the day for reasons such as my needing to socialize more, study, or whatever. Like I said, danger to one’s development is a grounds for forced care.

In theory, the law doesn’t sound too bad, but I can imagine treatment providers such as the ones in the mental hospital, whom I couldn’t trust, can misuse this law for very harmful purposes. Does this mean anyone deemed nuts or dumb, to use some slurs, is at the mercy of the so-called helping profession? It’s crazy!

This post is written for #SoCS, for which the prompt this week is “Nuts”.

November 2019 To-Be-Read List

I haven’t read that much in the past few months, but this week, I’m enjoying reading again. I discovered a To-Be-Read list linky, so am linking up there. I still have a huge pile of books I’d like to read or am reading but haven’t finished. Here are a few I’m planning on reading this month.

1. Matilda by Roald Dahl. I think I said before that I read it a ton of times in Dutch as a child, but now I’d like to read it in English. I’m choosing the audiobook version narrated by Kate Winslet.

2. Scars Like Wings by Erin Stewart. This one has been on the list of books I can’t wait to read for months. It was published last month and I fully intended on buying it on Kindle as soon as it came out. That didn’t work though, as I don’t have my husband’s current credit card details in my account yet. Just now, I had the amazing idea of checking whether the book is on Bookshare before I buy it once I do have my husband’s payment details. And guess what? It is! This sounds like such an amazing book.

3. Left Neglected by Lisa Genova. I started this one a few months ago, but never got beyond the first chapter. Not because I didn’t like it, but because other activities got in the way of my actually reading.

4. Unthinkable by Helen Thomson. This month is somehow dedicated to nonfiction. I love the topic of this book. As you can see, medicine is my thing.

This is another book I’m partway through already. I really want to read some new stuff too, but can’t think of any right now. I mean, of course, I have a huge TBR pile, but I don’t want to up the pressure by forcing myself to read more than I comfortably can.

5. Preemie Voices by Saroj Saigal. This is a collection of letters from people born very prematurely in the late 1970s to early 1980s. They share their experiences and advice for parents of currrent day preemies. I was a preemie too, slightly younger but now at the average age the preemies in this book were when they wrote the letters. I feel there’s a lot I can relate to in this book. Even more than when I started reading it some five years ago when it was published.

What’s on your to-be-read list for this month?