My 2020 Word of the Year

And I finally feel well enough to write what I hope to be a coherent post. Last Wednesday, I wrote one too, but I barely remember it and someone commented that she could feel the flu through the screen. I had a relatively mild case, as I only ran a fever for two days I think. I still have a sore throat, some mild nausea and feel generally unwell, but I’ve at least been able to stay up all day.

We’re already almost half through the first month of the year. This week though, Kristi over at Finding Ninee is hosting Finish the Sentence Friday with the theme of your word for the year. These are, like I said last year, always posts I dread making, as I’m never quite sure life will happen as I imagined it would and then I end up beating myself up. Like, in 2018, I chose “Be” as my word even though it was to be the most eventful year in quite a while. I was just very naive. This year, if I choose a similar word, intending life to go on as it has for the past few months, I’m sure I’m creating a bad omen. Then no doubt will I be kicked out of the care facility. Yes, I’m pretty superstitious like that.

So for this year, a lot of words floated through my mind. “Mindful” and “Calm” did, but I was sure the passivity of them would create a bad omen. “Growth” doesn’t feel right, as that seems like the opposite in some way, requiring me to make progress in some yet undetermined respect.

So, the word I’m picking for this year just popped up into my mind as I sat down to write this post. It is: WELLBEING.

Now let’s hope I don’t get into some type of life-altering health crisis this year. Then still if I do, I can still focus on my wellbeing within the limits my body will set.

2019: The Year in Review

Wow, can you believe 2019 is almost over yet? It was truly an eventful year. I want to do a review of the year. I originally intended on waiting till the 31st to do it, but I’m not sure I’ll have time for it then, as I’m celebrating New Year’s at my in-laws.

I had a theory when I was a teen that said life ran in cycles, by which every three years I’d find myself struggling significantly, then the next year would be one of hope, and the third year would be one of disillusionment, by the end of which I’d spiral into despair again. 2001, 2004 and 2007 were all years of despair, whereas 2002, 2005 and 2008 where years of hope. I didn’t continue to be superstitious about this past that point and honestly looking back each year was really a mixed bag. By this logic though, 2019 would have to be a year of despair. It was to begin with, but it ended on a really positive note, whereas by my teenage logic, the fall of the year of despair would be the hardest.

Well, let me say this year was extremely eventful indeed. At the end of 2018, we had just mailed out the application for long-term care funding. I started the year really hopeful by looking at a living facility and having my long-term care assessment in January. Then in February, I grew cynical. I decided everything wouldn’t be okay till 2021, as that would be the year people with lifelong psychiatric conditions would be allowed access to long-term care. I was right. My funding application got denied.

March, April and May were all largely months of waiting, as we sent out the appeal letter and my appeal was looked at. In late May, my support coordinator told me I would most likely not be granted long-term care funding this time either, but the lawyer in charge of my appeal was going to see if she could find a way to approve me anyway. She did somehow. I feel the long-term care regulations put people with multiple disabilities at a significant disadvantage. I remember writing blog posts explaining the legalities of long-term care back in like 2009 on my very first WordPress blog and I already felt the rigid care packages based on primary disability, were stupid. I don’t know how they managed to grant my appeal and even if I knew, I wouldn’t share it here.

By the time my long-term care funding was approved, my support coordinator had been informed that the care facility in Raalte with her agency had several available rooms. I started the intake process. By late August, just as I was losing hope again, I was told I would be accepted. I moved on September 23.

The past three months have been good. I feel a sense of calm, even though I still experience meltdowns. I had one tonight. Like a fellow patient on the locked unit said once, I can move around all I want, but I still need to look to myself for improving my own mental health.

When I looked at my review of 2018, I saw that my husband had been warming me up to us buying a house in his work city. I thought then that this may not happen if I go into long-term care, and indeed the house we bought isn’t in his work city. However, it’s still a house he likes. It is legally my house too, of course, which is good, in that I can move there if I ever get kicked out of long-term care. I also try to stay involved with renovation plans, but I struggle with this.

I took a look at my hopes for 2019 as I was preparing to write this review. I can be pretty satisfied with how I did on them. The only goal I didn’t meet, was to have a healthier lifestyle and lose weight. I’m doing okay on the healthier eating part, as I haven’t had binges much since coming to the care facility and make sure I don’t indulge into my every food whim. However, I don’t exercise nearly as often as I want to, though I get about as many active minutes as I did when living with my husband.

I did buy a new computer. Two, in fact, as I wasn’t happy with the Mac I bought and sold it to my mother-in-law. I am very happy with my current Windows PC though. Having a working computer again enables me to do so much more with my blog than I could when only using my phone. This helps me keep a regular blogging schedule too. Finally having found a feed reader that works in my browser, also helps. That was my only initial frustration with my current PC, as my Mac had a good feed reader and I struggled to find one for PC.

My last hope for 2019 was to stay mentally stable. I’m pretty sure I have reached this goal, as I’ve not been in serious crises at all. I’m also more than happy with how my staff handle my meltdowns or short crises as they do happen.

Oh, Christmas Tree!

Today, the staff at day activities have been setting up the Christmas tree and other decorations. I know some people in other countries do so much earlier, but St. Nicholas is celebrated on December 5 here and it’s pretty much not done to set up your Christmas tree before then.

I have a book of Christmassy journal prompts. They start on December 1, but I haven’t written on any of them yet. Today, I’m choosing to write on the Dec 2 prompt, which is about Christmas trees.

Growing up, my family had a Christmas tree almost every year. The one or two times we didn’t, it was because of our cat. We had a live tree and our parents pretty much detested faux trees. We had the tree decorated with silver and red Christmass balls and bells that were made of glass. Almost each year, I would accidentally break at least one ball or bell. We also had a ton of wooden figurines including santas, snowmen, angels, etc. I particularly loved to play with these figurines. We had yellow Christmas lights on the tree. I’m not even sure other colors were available back then. We didn’t have a star or other large decoration at the top of the tree.

When I moved out of my parents’ house, I didn’t particularly care for decor. After all, I was totally blind by this time. No Christmas tree for me.

In the psychiatric hospital, we did have a lot of Christmas decorations. Yes, even on the locked ward. Of course, they had to be safe, so they couldn’t be made of glass or in any other way used to cause harm. I was admitted in early November and, by the time the decorations got put up, was still pretty unstable. One day, in an anger outburst, I pulled all Christmas decorations off the wall.

I still don’t really care for Christmas decorations, though I don’t really dislike them either unless they’re in my way. It is very intriguing to know how much people can put in my way in the name of decorating. At my last psych unit, I was in crisis almost every December due to having bumped into one tree or another (we had several) a little too many times.

This year, I know my staff will make sure to place the Christmas tree somewhere I won’t bump into it. Both at day activities and at the home, I’m not the only autistic or blind person. My staff asked me whether I want to make a Christmas decoration with one of them next week. I said yes.

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?

2018: The Year in Review

The year is nearly over. I have been debating whether to post a review of the year for a while, since I didn’t start this blog till late July. As such, most of the people who read it, may not be aware of what’s been going on for the first half of the year and I might need to explain too much. However, I want to do this review for myself if for no-one else. Here goes.

The year started off rather bad, with me having a major meltdown at day activities on January 3. I didn’t know at the time how significant that event would be, but it was the one event that defined me for the rest of the year and probably into 2019.

I looked back at my old blog’s posts from January 2018, and I can’t believe how blissfully ignorant I was. In the second week, I chose “Be” as my word for the year, for I intended 2018 to be a year for rest and staying present. A week later, it was decided that my day activities hours would be cut and I would eventually have to find a new place.

In late January, when I had more meltdowns at day activities, I started thinking of involving the Center for Consultation and Expertise (CCE) on my case. They had been involved with me in 2010 and 2013 previously and I’d hoped they could help me find some perspective. For those who don’t know, the CCE is an agency that helps people who fall through the cracks in the care system due to complex care needs and severe problem behavior. I didn’t really know whether my situation was bad enough, but I was desperate.

I was first told by my community psychiatric nurse, who called the CCE on my behalf and minimized my problems, that I’d have to go to the blindness agency for support. My need for sensory activities, after all, was due to blindness and I couldn’t possibly have severe problem behavior, as that would mean I couldn’t be married or live independently. This assertion caused huge internal turmoil. Some parts of me thought we must be too good for day activities and that’s why we’re being kicked out. After all, aren’t we oh so intelligent? Most of the parts in me felt desperate though and didn’t care about my IQ or our marriage in this sense for that matter.

With the help of my support coordinator, I finally was able to get an orientation meeting with the CCE in May. I apparently expressed my despair well enough that they took me seriously and found a consultant.

In the meantime, my support team and I didn’t sit still. This was why we had already found new day activities by the time we’d start the consultation at the end of July. At the time, I was feeling a bit conflicted about my living situation. My husband was trying to warm me up to the idea of buying a house in the city where he works. I didn’t feel like it, but I pushed those feelings aside. Until late September, that is.

Thankfully, the consultation hadn’t been completely closed by this time. I finally gave in to my feelings and admitted that I want to go into supported housing. I initially felt a lot of shame about this. I didn’t know whether my husband would be supportive and I knew my family wouldn’t be. Particularly when creating my care plan and reading the application for long-term care funding, I felt embarrassed. There is this voice inside my head. It’s my mother telling me, shortly after my admission to the psychiatric hospital in 2007, that I can’t even wipe my butt without a support worker’s assistance. I can, but so what if I can’t?

My husband turned out to support me. The CCE consultant is willing to stay on my case until we’ve finalized the process of getting me long-term care funding. The application was finally mailed on the 20th of this month.

Can I say this year that I fulfilled my word of the year? Not really. However, over the past few months, since deciding to apply for long-term care, I’ve felt a certain sense of calm. It seems as though I hit rock bottom this year and I can only go up now.

Besides the day activities and living situation, other things happened too. My paternal grandma died. This, for whatever reason, helped me find the strength to distance myself a bit from my family of origin. Since no longer expecting them to be genuinely interested in my life, I’ve felt a sense of calm in this respect too.

I’ve also learned to accept mysselves, that is, my alters, as they are. I am still not fully at a point of accepting myself without the need for diagnostic labels, but I am getting close.

With regard to blogging, I’ve improved much in the past year. I’ve been able to keep a pretty regular blog for five months now. I am so glad I started this blog, even though sometimes I feel disappointed in my stats. This blog is where I can be myself.

Lucy At Home UK parenting blogger

How My Friends and Family Would Describe Me #Write31Days

Welcome to day ten in #Write31Days. Today, I’m writing on how others see me. The prompt from The Self-Exploration Journal I’m basing this post on asks how my family and friends would describe me. They probably assume that my family are mostly supportive. My parents are not. But it still helps to look at how tey’d describe me to get to know myself. I am going to list a few qualities I’m told I possess.

1. Strong-willedness. Most of my family and friends agree that I’m pretty strong-willed. This can be a positive thing or a negative thing. I tend to fight fiercely for what I think is right. On the other hand, what I think is right is not always what others want.

2. Intelligence. My father pretty much reduces me to the three digits of my measured verbal IQ at age twelve. It’s 154, if anyone’s interested. My IQ was measured again last year and was down to 119, but my parents feel I wasn’t trying my best then.

3. Determination. Some of my friends view me as quite a go-getter. Other people tend to think I’m quite the opposite. It tends to depend more on their view on my disabilities than on me.

4. Humor. Way back in like 2005, my psychologist asked for my parents and sister to each come up with three qualities of me. My sister came up with my sense of humor. It tends to be pretty dark and cynical. I remember, when I had just been hospitalized on the psych unit, already cracking jokes about the differences between the patients and the staff.

5. Manipulativeness. I just had to list this one. Particularly my parents describe me as manipulative. In a sense they’re right. Then again, what strong-willed, determined person isn’t manipulative in the face of authority figures telling them what is best for them? I think that being manipulative isn’t necessarily a negative thing. All communication is in some ways manipulative, as its aim is to influence others. So can I just say I possess a bit of healthy manipulativeness?

What qualities would your friends and family say you possess?

Years From Now

As regular readers of this blog know, I’m a fan of journal writing prompts. Today, I found a self-exploration journal on Amazon and, since it’s free, I didn’t hesitate to download it. It’s called The Self-Exploration Journal: 90 Days of Writing, Discovery and Reflection. The first prompt is to write down why you want to embark on this journey of self-discovery. I’m not even sure. I mean, I just write for the sake of writing. I don’t even commonly reread my blog entries, though I did often reread my diary entries when I still faithfully kept an offline diary in the first three years of secondary school. I loved that. Maybe I should make a habit out of rereading some of my blog entries too. But since I currently don’t, I don’t even know that blogging is going to help me discover myself.

I mean, who am I, myself? I see myself in so many fragmented aspects that I’m not even sure who “Astrid” is. All these aspects, parts or identities usually listen to that name, but even as I write this, I don’t feel “whole”. I’m just a part among parts that somehow, in an abstract kind of reality, make up the mind belonging to one body. We have just two hands, both of which we currently use for typing up this journal/blog entry. Which, I might say, is going nowhere.

The second question in the 90-day series asks me to write about how I want to look back on my life ten years from now. Well, I honestly have no idea. Four years ago, I wrote a lettr to my 38-year-old self. I think I may reread it today. Already nearly half of those ten years have passed, but I have no clue at the time what I dreamed about. I mean, three years ago, I did a post as if I was 79 already and looking back at the past fifty years. The only thing I remember that would-be-flashback including was that we’d still live in our current house. Now we’re not even three years on and my husband and I are already thinking of moving.

What does it say of me that I don’t envision that much progress even in fifty years? Does this lack of a truly progressive vision of the future impair my actual progress? Or is it the other way around? That I’ve learned not to expect positive change because the past taught me I’d always fail anyway?

The first time I did a “___ years from now” post was in September of 2006. A psychologist my staff were consulting had asked me where I saw myself in three yars. There were, or so I thought, two possible scenarios: one in which I lived successfully fully independently or with just a person reading my mail once a week and was at university and the other in which I needed substantial support. I explicitly wrote that this “black” scenario didn’t have to mean I needed 24-hour care, but that I needed support beyond that which is normal for a blind person.

Three years later, in September of 2009, I had almost two years in a psychiatric hospital behind my belt, of which I’d spent sixteen months on a locked ward. I wrote a flashback then and remarked kind of cynically that stuff couldn’t get much worse than they were now in three more years, or I’d have to be in a homeless shelter or prison. Then, I reasoned, I wouldn’t have Internet access so the whole wide world wouldn’t know. As it turned out, in September of 2012, I was still on the same ward I was on in 2009.

I finally left the hospital in 2017 and live fairly independently with my husband. I guess at this point, I’m pretty content with my life. That doesn’t mean I have absolutley no dreams, but I must admit I don’t generally see these as realistic indeed.