A Letter Explaining My Life Right Now

Posted on by Astrid

Today’s topic in 7 Days 7 Posts is to write a letter to someone explaining your life right now. I have been thinking about reconnecting with the head nurse from the psychiatric resocialization unit for a while. She was one of the most supportive people I ever met during my psychiatric hospital stay, but still, she was a bit prejudiced. Here is a letter to her.

Dear K,

How are you? I hope you are well. Do you still work for the psychiatric hospital? When I last spoke to L (my named nurse from the resocialization unit), she informed me that the entire Nijmegen long-term care hospital was closing and moving to Wolfheze. Do you work there now?

When I last wrote to you and L, I explained that I was living with my husband in the tiny village and going to day activities. I didn’t inform you that I was struggling. I eventually got kicked out of my first day center with this agency and transferred to another one.

Still, I struggled with independent living with my husband. My husband is a truck driver now and his shifts are like 12 hours a day. For this reason, we finally applied for long-term care funding at the end of 2018, which after a long battle was granted in June of 2019. As of September, I live in a care facility for people with intellectual disability in Raalte. I know you didn’t want me to go into housing for people with intellectual disabilities. Well, I am happy here.

We involved the Center for Consultation and Expertise again when I was struggling at my first day center. The consultant psychologist assigned to my case assessed my needs. Among other things, she concluded that I function emotionally at a level of around 6-18 months.

I go to day activities at a group for older people with profound intellectual disability, most of whom live with me too. I go for almost daily walks. I love to go to the snoezelen® room too. I also do a weekly cooking activity with the staff intern. It’s sometimes difficult to figure out activities I can do, because the other clients mostly just sit around and I almost need one-on-one support with most activities.

I am still married to my husband. We bought a house in Lobith, but this is mostly for him to live in and for me to go to on week-ends.

I still see the mental health team, but have decided not to pursue any formal therapy program for now. Dialectical behavior therapy, which I used to try, didn’t work out because of my autism and my dissociative symptoms. I don’t feel comfortable going through the assessment for dissociation though.

Anyway, hope you are doing well. I suppose L is around retirement age now, but if she still works at the hospital and you still see her, send her my warm regards.

Astrid

A Day I Will Never Forget

Posted on by Astrid

I’m a day late with this topic in 7 Days 7 Posts. The Tuesday topic didn’t appeal to me and besides, I was really anxious then. Yesterday I had a lot of meetings to discusss my anxiety and the reasons for it. I made it clear that I really needed some more care and particularly more consistency and clarity in my day. I went to bed at 8:15PM, having taken an Ativan to help me sleep.

Yesterday’s topic was to describe a day you’ll never forget. I already described how I met my husband sometime during the #AtoZChallenge last April. Another day I will never forget, though for less pleasant reasons, is the day I landed in crisis in 2007. I probably described that day a few times before already, but right now I can’t find where. If you’ve read this before, I apologize.

On November 2, 2007, I was in my parents’ city to get a landline phone I wanted to use in my student apartment. The reason I wanted a landline was the fact that I was scared of mobile phone radiation causing Alzheimer’s. It’s weird that now I use my iPhone like all the time and don’t worry about it much.

I had come to my parents’ the previous evening and was planning on going back home to Nijmegen that Friday afternoon. However, on the train station, I had a meltdown. The police were called and removed me from the station.

I went to the independence training home where I used to live until that summer. I wasn’t really sure what I wanted, but I needed to look up some phone number on my laptop. I knew I shouldn’t go back to my parents’, as they’d probably be angry with me.

After having called whoever I needed to call, I wandered around the training home neighborhood for some hours, not sure what to do. At one point, a fellow client at the training home realized I was struggling, so she offered me to come into her apartment and stay for the night, so that we could find a more long-term solution the following day. However, the staff came to her and told me to leave. They weren’t going to take responsibility for me.

At that point, I had another meltdown. I walked to the nearby bus stop, catching the 8:01PM bus to the train station. In my memory, it was still light outside, even though that’s not possible at such a time in early November. I called my support coordinator to let her know I was going to commit suicide. The bus driver overheard me and called the police.

I was terribly scared, because the police had kicked me off the train station that afternoon. However, I willingly went with them to the police station. They called someone called a community physician, who is in charge of triaging people not known to that city’s mental health agency. He was a really blunt man, telling me that I made people feel responsible for me in a way as if I was just seeking attention. He even used a kind of threatening voice when he said he was going to call the crisis service. I didn’t mind.

The crisis service psychiatrist and CPN came out to the police station. After assessing me, they asked me what I wanted. To this day, I’m not sure whether I really didn’t know what I wanted or felt too embarrassed to ask for help. After all, when talking to the behavior specialist for my current care facility yesterday, I also said I didn’t know what I needed even though I did. Anyway, the psychiatrist proposed that I be admitted to the mental hospital and I agreed.

Three Wishes

Posted on by Astrid

I’m trying to participate in 7 Days 7 Posts organized by Jessica from Daysixtyfive. That is, I won’t promise I’ll complete the challenge, as I’m having a nasty cold. Yes, again. I hope I don’t end up with a fever this time. That being said, if it doesn’t get worse than it is now, I’ll probably be able to do fine.

Today’s topic is about wishes. You have just been granted three wishes. What are they?

I initially thought that we’re supposed to have big, world-changing wishes like peace everywhere. Then I saw Jessica’s post and her first two wishes are just for herself and her family. Maybe we all are self-centered like this, so I don’t need to feel shameful about wishing stuff for just myself. Here goes.

1. Physical and mental wellbeing. I purposefully wish for wellbeing, not health, as the genie might interpret health to mean I want to get cured of my disabilities. I don’t. I want to remain blind and autistic and having mild cerebral palsy. I even don’t want to be cured of my dissociative disorder, in that I want to remain multiple. What I do want is to be is stable mentally, less anxious. I also want my chronic physical ailments to go away. And while we’re here, I wish this nasty cold away and not to return.

2. To be close to my husband. I would wish for a suited care facility in my husband’s area, so that I could visit him more often. A suited care facility would be much like the one I’m in now, with a day center on grounds, lots of sensory equipment, the staffing level for me to be able to enjoy regular leisure activities, etc.

3. Unlimited ParaTransit access. This was the first that came to mind after a care facility close by my husband. Bigger things like wellbeing hadn’t even come to mind yet. I could wish for an endless stream of money, so that I can hire my own taxi drivers, but I don’t think I’d feel any better then. However, the ability to travel wherever I want without having to worry about public transportation, is very high on my list of desires. Interestingly, for the cost it took to make all trains and buses wheelchair-accessible, the government could have made this a reality for all majorly disabled people.

What would you wish for if you were granted three wishes?

Carol and Jane

Posted on by Astrid

This week’s Reena’s Exploration Challenge is all about describing the interactions between (your) thinking brain and feeling brain as if they’re characters, perspectives or mindsets. In the theory of dissociative identity disorder, alters are divided into two categories: apparently normal parts (ANPs) and emotional parts (EPs). Some theorists refer to them as Daily Living and Trauma Fixated parts instead. Additionally, I have experience with dialectical behavior therapy, which has the concepts of rational and emotional mind and Wise Mind as the goal to integrate the two.

I don’t believe in the rigid ANP/EP divide and the alters I’m going to describe in the piece below, would most likely both be seen as EPs, even though they’re on opposite ends of a spectrum. You see, one of the main triggers for identity confusion for me is the inability to integrate my low functioning level with regards to my social and emotional development with my at least somewhat above-average verbal IQ. In this sense, Carol and Jane do represent thinking brain and feeling brain.

Yesterday I struggled. I got an official reminder from local taxes from when my husband and I still lived together in the tiny village. An official reminder means they’d previously sent out another type of reminder that doesn’t come with extra costs. This one did come with extra costs and the next step, if I don’t pay, would be a debt collector’s visit. I don’t know why the reminder was only sent to my My Government inbox and not to my husband’s and I didn’t understand the reminder. I texted my husband to ask him for help. By this time, Carol, the alter who is very emotionally immature and vulnerable, was already getting upset. Why don’t I just go under financial management and never bother with money again?

My husband was a little annoyed that I shoved this task onto his plate. For this reason, Jane, who wants to be the intelligent, successful, self-reliant one, said: “Okay, I’ll solve it.” Carol was still prominently present in my mind and she has difficulty thinking clearly. In the end, I paid off the tax debt, but put the wrong identification number in the Comments field. This means the tax agency won’t be able to identify me as the debtor, so it may mean I lost the money. It was €160.

From there on, Carol took full control of my mind. I cried my eyes out and really wished I could crawl under the covers, get a guardian, be supported in the care facility and never worry about difficult decisions again. I didn’t even feel like seeing my husband, as Carol feels too inadequate for marriage.

Ultimately, the situation got sorted (hopefully). My husband sent out an E-mail to the tax agency asking them to either process my payment with the wrong number or return it to me so I can submit it again. Still, this whole situation has us (as in, me with all my parts) truly triggered. It’s a sad reality that each time, I am confronted with the disconnect between my good intellectual functioning and my poor emotional functioning.

My 2020 Word of the Year

Posted on by Astrid

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.

#IWSG: Inspiration to Start Writing

Posted on by Astrid

It’s not the first Wednesday of the month, but the Insecure Writer’s Support Group (#IWSG) day got set for today anyway because last Wednesday was New Year’s. I should really start to schedule these posts in advance, as right now I’m sick with the flu and not in the mood to blog. I mean, yesterday I ran a fever. Probably the days before too, but I didn’t have it checked then. Today I’m fine temperature-wise, but I still feel generally awful. I spent the entire day in bed.

This month’s optional question is what inspired you to start on your writing journey. The short answer is I don’t know. I’ve wanted to be a writer for as long as I can remember. My parents did encourage me, even though looking back I was a pretty awful fiction writer. Either they didn’t notice, which I doubt as my Mom read a lot, or they didn’t want to discourage me.

I first started writing actual stories and even what could’ve turned into books had I finished them when I was around thirteen. I don’t know what inspired me to draft those first manuscripts.

In the summer that I turned fourteen, I discovered my favorite Dutch YA author, Caja Cazemier. She was definitely an inspiration for me. A few of my stories actually contained a lot of plagiarism from her.

And then I discovered the Internet and I started writing for an audience. Well, at first I didn’t really care about an audience. My original online diary had about five readers including my parents and the site I hosted it on, didn’t have a comment function. I actually moved it to WordPress inspired by some criticism I’d gotten from my parents about it.

I’m not sure what else to say right now. I am currently very much inspired to continue writing by the people I meet online. I can’t even imagine writing without an audience in mind anymore.

2019: The Year in Review

Posted on by Astrid

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.

The Third Day of Christmas

Posted on by Astrid

I’ve seen a lot of people share their favorite holiday-themed memories. I’ve wanted to share mine, but also felt rather unmotivated to actually sit down and type. Today it’s Sunday and I came home to the care facility from spending the week-end with my husband earlier than usual. I guess it’s about time I share some Christmassy cheer.

My memory isn’t really about Christmas though. Or even boxing day. I know there isn’t such a thing as boxing day in the United States. Well, here in the Netherlands, what British folk call boxing day is called the second day of Christmas.

From there on, many people count the day after that, December 27, as the third day of Christmas. Some go on to count the fourth and fifth day of Christmas. I’ve never heard someone refer to December 30 as the sixth day of Christmas though, and the fourth and fifth days are rare too. But the third day of Christmas is pretty much a thing here.

I first met my now husband six weeks before landing in the mental hospital. I was hospitalized in early November and still didn’t have independent off-ward privileges by Christmas, let alone that I could visit family.

My now spouse had family obligations over Christmas and boxing day, of course, but he was free on the third day of Christmas. That’s how came he visited me in the hospital that day, December 27, 2007. Please realize we weren’t officially in a relationship then. He probably knew that he wanted to be by this time, as he told me he loved me on January 7, but I definitely wasn’t yet sure and just saw him as a friend.

Now that I write, I realize I hardly even know what we did that third day of Christmas. He probably accompanied me to the nearby hospital cafeteria, where we had a cup of Earl Grey tea. Or maybe I had coffee. I’m pretty sure he had some kind of tea.

A year later, in 2008, we were officially in a relationship and he asked to meet me again on the third day of Christmas. Same ward still, as I spent an incredibly long time (sixteen months) on the acute ward. I had off-ward and even town privileges by this time, but I think we met again at the cafeteria. He said the third day of Christmas was our traditional day to meet from then on. I’m not sure whether we stuck to it much, but this year, inbetween the two days of Christmas and the week-end that follows, I’m also spending the third day of Christmas in our home.

Writer’s Workshop: Collections

Posted on by Astrid

This week, one of the Writer’s Workshop prompts over at Mama’s Losin’ It is about things you collect. It definitely appealed to me, as at least as a child an teen, I used to collect a lot. Now I seem to collect things you can use and that I actually intended to use when buying them, but then I end up rarely using them. Does that count as collecting?

As a child, I, like most other children, had a large collection of stuffed animals. I also had a lot of Barbie dolls and such. In particular though, I had lots of PlayMobil® figures and stuff for them. When I was about eleven, I was even gifted a large box of PlayMobil® by someone on a garage sale. I had previously visited the garage sale and bought some of his stuff and by this time he probably wanted to get rid of it all so bad. That plus seeing how much I enjoyed it and came back each time to buy more stuff, probably convinced him to give it all to me. I however did play with it a lot until I was about fourteen. I particularly remember the games I played with some Native American-looking PlayMobil® figures whom I called Ingassa and Maranna. I had no idea at the time what were real Native American names (still don’t to be honest). I would always say these figures came from Costa Rica.

Later, I collected gemstones and crystals. I had some interest in their presumed healing properties, but mostly just liked looking at the colors and feeling their shapes. I had a lot of quartz crystals, including amethyst, rose quartz and citrine. I also loved calcites and had both the green and honey-colored ones. I at age twelve did a large research project on mineralogy. I however had no idea one of my stones was a form of asbestos. When I found out what it was while living on my own in 2007, I almost landed in crisis thinking I or one of my parents would develop cancer from it.

By the time I came to college age, I didn’t really collect anything anymore. I don’t even know where my crystals are, even though I know I had them at my student apartment. I can’t see the colors now anyway, although I at least used to have a file in which I wrote which one was which so may be able to experience some joy from them anyway.

When I was about 25 though, I developed an interest in crafting and started buying craft supplies. For some stupid reason, I started with card making, which is a pretty inaccessible craft for someone who is totally blind. I probably spent over €1000 on supplies before finally giving it up. Then came jewelry-making, polymer clay, rainbow loom and some others, all hard for someone with my disabilities. I finally settled on melt and pour soap making, although I haven’t done this since coming to the care facility. The good part is though, even if my soaps don’t turn out aesthetically well, I can still use them, so I don’t just collect soap stuff for the sake of it.

More recently, I started collecting all kinds of scented stuff. I have a large collection of essential oils at my husband’s and my home. I also have wax melts and of course the fragrance oils I use for soap making. I love those. Still, my diffuser is probably still packed from the move. I need to ask my husband where it is, so I can bring it to the facility.

When I collect something, I’m usually more interested in researching the stuff I collect than actually using it. I loved learning about lotion making when I first started soap making, but I rarely actually made any lotions. I also have a ton of books on aromatherapy (most thankfully free or through my Bookshare subscription), but rarely make any blends. Of course, the reason is partly that I cannot tell how many drops of a particular oil I put into the blend. I would love to ask my staff for some help with this, so that I can make diffuser blends or even massage oils. But first, I need to find my oils and my diffuser, as I don’t want this to end like my card making obsession, where I spend another €1000 (that this time I don’t have) before realizing this isn’t for me.

Mama’s Losin’ It

Oh, Christmas Tree!

Posted on by Astrid

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.