💞 Happy Eighth Wedding Anniversary to My Husband and Me 💞

Today is September 19. Eight years ago today, my husband and I said our wedding vows. Twelve years ago today we first met at the bus stop nearest to the university that I could get to without transferring. That first meeting was awkward. I didn’t have good mobility skills, but of course it wouldn’t have been appropriate for me to use this boy I barely knew online as a sighted guide. As a result, I fell off a few steps and dropped my coffee.

My now husband said later that, after this first meeting, he wasn’t sure whether to ask to meet me again, but intuition told him that if he did, a lot more would follow. And it did.

Today, my husband had to work a long day as a truck driver. He originally had this week off, but changed that so that he could help me move to the care facility on Monday and make the move to our new house. He told me in advance not to be mad if he’d not be home by seven. As it turned out, he was home a little before eight. He also got tomorrow off unexpectedly, so our not being able to celebrate our wedding anniversary today is more than made up for soon.

Someone said in a comment on my previous post that my husband is lucky to have me, because at least I consider choosing him above self-care. I must say, I don’t see it that way, but I definitely feel I am lucky to have my husband. I mean, how many people would walk out on their significant others the day they were in a mental crisis? That’s not a fluffy, socially acceptable thing to do, but it’s reality. My staff at the psychiatric hospital had never seen a patient getting married while on their ward before.

The fact that my husband supports me through my decision to go into long-term care, also proves that I”m lucky to have him.

These eight years married and these twelve years knowing each other, have been very different from the traditional couple’s first so many years, but they’ve definitely been worth it at least for me. Without my husband, I don’t know that I’d even still be alive today. Here’s hoping for a lot more years of a happy marriage.

Freewrite on My Transition Into Long-Term Care

Yikes, in less then a week, I’ll be in the care facility in Raalte. It’s exciting, but of course it is also scary. I have been planning on writing more about the transition. In fact, I have Mari L. McCarthy’s 22-day transitions journaling course. I had it already before I moved in with my husband, but never quite used it then. I’m not sure I’ll use every prompt this time either. The day 1 prompt is to freewrite on your hopes and fears and such re the transition. Here goes.

I’m really excited to go into long-term care. I’ve been looking forward to it for almost a year. However, now that it comes close, I’m second guessing myself.

I mean, am I not happy with the situation as it is now? The honest answer is “No”, but does that relate to the situation or to me? As a fellow patient on the locked ward once said, you take you everywhere. As such, I need to be really clear that I’m not just depressed because I suffer with a mental illness. I need to separate what is my depression that just is from what is my unhappiness with living semi-independently.

Besides, am I truly unhappy? My husband said this time in my life was perhaps the happiest for me, judging by his observation, since he first met me in 2007. Then I must counter it’s perhaps the least unhappy time period in my life.

I really hope I’ll be able to have a happier life living in long-term care. I know I often feel very depressed when alone and that’s not a time my husband sees me. The times I have no-one to rely on, will most likely lessen a lot, but having my own room means I’ll still be able to have alone time.

I fear, however, that I’ll be understimulated in long-term care. One of the things the behavior specialist from the blindness agency wrote in her report on me from observing me at day activities, is that the activities are not challenging. I do simple puzzles, construction play and such. If that’s all I’ll be required to do at my new day activities, I’m sure I’ll get bored. Part of me says that we’ll find a way to deal with this and that I need to be content to get the care I need. Another part says that I shouldn’t stop desiring stimulating activities just because I am in long-term care.

I also fear that going into long-term care will be a slippery slope. My father’s voice is in my mind, saying I manipulate the world into giving me care. If he is right, going into long-term care will just make me lose skills, become more dependent and ultimately need a lot of one-on-one support. It may lead to backlash from the care facility, causing me to get kicked out again.

I will, of course, also be missing my husband. I can deal with it, but it’s sad. I’m scared that he’ll grow tired of visiting me every week because of the long drive (nearly 90 minutes one way). I don’t want to lose my husband. I said, when originally falling apart in 2018, that I would choose him over long-term care if I had to. I don’t really need to choose, as we’ll still be seeing each other, but what if I do? Will it be too late to choose him? I hope not.

Confessions of a New Mummy

Working On Us Prompt: Family Relationships and Boundaries

This week’s Working On Us prompt is about relationships and boundaries. I am going to focus in my post on my relationship with my family of origin.

As regular readers know, I don’t have the best relationship with my parents. They are very unsupportive of me regarding my mental health and disabilities in general. They, in short, believe that I refuse to accept my blindness and for that reason, choose to make up my other disabilities, including mental illness, to have an excuse to be different. They say I somehow crave attention and therefore want to manipulate everyone into providing me care.

Well, let me be very clear that I do not choose to be mentally ill or autistic. In part, my mental health issues are in fact trauma-based, having been caused by my parents’ mistreatment of me.

For this reason, I’ve had to set some boundaries with my parents. None of these I voiced towards them yet. I, for example, have them, as well as my sister, on restricted access to my Facebook, which means they don’t get to see posts I set to friends only even though we are technically Facebook friends. My sister is generally less eager to voice her opinion, but she for all I know 100% agrees with my parents. My brother-in-law isn’t really any bad, but I have him on restricted access just in case. When I created this blog, I purposefully didn’t link it to my Facebook, so that my parents and sister are less likely to find it.

Another boundary is not having told my parents or sister that I’m going into long-term care. I am going to officially disclose my going into long-term care on the afternoon or evening of the day I move to the care facility. I have already had a dozen scenarios run through my mind of how they will respond. They may already know, of course, and never have told me in order to keep the peace. They probably don’t know though. In that case, they may decide to estrange themselves from me, or they may try to talk me out of being in long-term care. They may, in the best case scenario, say it’s my choice and my life.

As far as respecting my boundaries, I’ve never set truly firm boundaries with my parents. I may have to soon, in case they want to talk me out of being in long-term care. I may even have to go no contact with them myself.

In case you are wondering who supports me, I do have my lovely husband and his parents. My husband of course will be missing me when I go into long-term care, but he 100% supports me nonetheless.

I Was Taught to Believe…

That, if I didn’t have my parents’ support, I had no-one’s and I would never get anyone’s support. “You are socially inept,” my mother said, “and you got it from us.”

This exchange happened in late April of 2006, when I had just been kicked out of my parents’ house. Not that I still lived with them, and not that I was ever planning on doing so again, but my parents made it very clear that they would no longer support me. I don’t even mean financially, but practically and emotionally.

What had I done to deserve this? I had told them I was delaying going to university one more year. I wasn’t giving up on it. I was still going to meet their expectations of me that I become a university student, grad student, Ph.D., professor, you name it.

And then I didn’t. In the fall of 2007, while attending the university I had originally been meant to go to in 2006, I gradually fell apart and was ultimately admitted to the psychiatric hospital. Though I was discharged in 2017, I never went back to university.

Though my parents and I are still in limited contact, I know I don’t genuinely have their support. Not emotionally. I mean, I see them twice a year, talk to them on the phone about once a month and get €1000 at the end of the year to spend on new technology mostly. I don’t know whether this will remain the same when I go into long-term care (or when they find out about it). And I’m not sure whether I care. They aren’t the type to stop talking to me at funerals or the like and I don’t really need their money or birthday presents or phone chatter, though they’re nice. I won’t go no contact, but if they decide to abandon me, that’s their choice.

Because, though I was taught that without my parents, I had no-one, this isn’t true. I met my husband in the fall of 2007. You know, the fall that was supposed to be the start of my academic career and ended up being the catalyst to my getting a life of my own. My husband supported me through the psychiatric hospital years. He supports me through the years we live together. I trust that he’ll support me through the coming years when I’m in long-term care. I may be socially inept, but that doesn’t mean no-one will support me. Love me even.

This post was written for V’J.’s Weekly Challenge. V.J. challenges us to think about the untrue things we were led to believe as children or in other dysfunctional relationships.

#WeekendCoffeeShare (July 21, 2019)

It’s Sunday again and, though I have lots of things I want to write about, I cannot seem to get started. I am however enjoying once again joining in with #WeekendCoffeeShare. It’s lovely to catch up with people who visit my blog each week for this hop.

If we were having coffee, I’d share that I’m sweating, even though it’s supposed not to be that very hot here now. Only about 23 degrees Celsius. I guess my room keeps the heat. Next week, the temperatures are supposed to rise to 35 degrees Celsius or more.

If we were having coffee, I’d share that I need your prayers, positive thoughts and crossed fingers re our house-hunting journey. We found a house we may want to buy. Yesterday, my husband took me on a tour of the town.

If we were having coffee, I’d share that I had a lovely day yesterday at my in-laws’ house. My father-in-law is about to return from his vacation in about an hour, so it was just my husband, me and my mother-in-law. My husband cooked up a tasty dinner of pasta with cheese, minced meat and zucchini. When we returned home, we drove right through a thunderstorm. This was a bit scary.

If we were having coffee, I’d share that I’m currently reading Angels in Our Hearts by Rosie Lewis and Casey Watson. I just finished the second story. It is a really good book.

If we were having coffee, I’d tell you that my husband helped me tidy my room today. We threw out a lot of my soaping stuff that had expired.

If we were having coffee, lastly I’d share that I’m really wanting to pick up creative writing again, but somehow, I feel stuck.

How was your week and how is your week-end going?

#WeekendCoffeeShare (July 14, 2019)

Yay, it’s Sunday! I am once again joining in with the #WeekendCoffeeShare fun. It’s relatively early for me to write this post, so the most recent drink I had was actually coffee. I usually drink only one cup of coffee at breakfast )or lunch, as it was nearly afternoon), but my husband made me a second cup saying it’s good for the heart. I don’t know whether that’s true, but oh well.

If we were having coffee, I’d share that my husband picked up my new Windows laptop on Monday and installed it on Tuesday. The adaptive tech guy came by on Wednesday to bring me a new Braille display and install the JAWS screen reader on my computer, so that I could actually use it. I have been playing with my computer ever since. I hope the tech company will get me training on the screen reader and Windows 10, but even without training, I like this computer much better than my Mac. Right now, my husband is resetting my Mac, so that my mother-in-law can have it. I think I just closed the tab with instructions on it from my iPhone.

My mother-in-law offered to pay more for the Mac than the Windows laptop had cost, but we refused. I don’t want to get extra money from switching computers.

If we were having coffee, I’d also share that I visited the living facility in Raalte that’s with my current care agency on Wednesday. It was great. There’s tons of sensory equipment in both the house and day center. The staff are also really nice. The house they felt was the most suitable for me, has twelve clients living there. There are two staff during the day and an extra staff during times the clients get showered and such. The manager and care consultant were a bit vague about the waiting list to move in, but I hope to hear more about that soon.

If we were having coffee, I’d share that yesterday, my husband had the yearly driver’s day at his work. He is a truck driver for a large transporting company and the driver’s day is sort-of-mandatory. I spent the day at my in-laws. Well, my father-in-law had just left for vacation, so I was alone with my mother-in-law. We went for a walk with her dog. Wow, it was hot and humid! My husband came to my in-laws’ house after a few hours when he’d had enough of the event at work. My mother-in-law cooked us dinner, although she was interrupted to pick up a kitten from the animal shelter. She volunteers to bottle-feed kittns that are too young to be kept at the shelter. The kitten was lovely!

How was your week?

#WeekendCoffeeShare (July 7, 2019)

Ugh, I’m feeling so off. I want to write so bad. Words are spinning through my mind, but somehow I cannot put them down onto the keyboard.

I am once again joining in with #WeekendCoffeeShare. I had a delicious little apple pie with my cup of green tea this evening. Grab a cuppa and let’s catch up.

If we were having coffee, I’d share that we decided to let go of one of the houses we were looking at this past week. It’s the house built in 1880 that my parents are totally in awe of, but we’d take a huge risk if we bought this. Inspecting the foundation for problems cost like 5000 euros and there is indeed a high risk that the foundation will be unstable. That amount of money is not something we want to invest before buying the house, yet we don’t want to risk finding out about it once it’s ours. I didn’t like the house to begin with, but my husband loved its appearance.

If we were having coffee, I’d share that next Wednesday, I am invited to go check out the living facility with my current care agency. It’s in Raalte, which is a little over an hour’s drive from my current home. My support coordinator was told not to get me too excited, so I predict the place has already almost certainly been taken, but oh well. We’ll see.

If we were having coffee, I’d share that I bought some books on Amazon today. One is a collection of journaling prompts (yes, again!), which cost only 99 cents, but it’s still disappointing. It has a ton of typeos and characters VoiceOver makes out to be Chinese or Japanese in it. The other is Angels in Our Hearts by Casey Watson and Rosie Lewis. It’s a collection of previously published eShorts by these two foster carer writers. It sounds good.

If we were having coffee, lastly I’d share that my husband ordered a new Windows computer for me today. My mother-in-law will pay for it, as she’ll get my Macbook. The computer he ordered is an HP Pavillion, which I’ve heard is quite a sturdy model. It doesn’t have a solid state drive like my Macbook, but it does have some type of thing attached to the hard drive that keeps stuff you use often in a sort of ready-access memory. The hard drive has 1tB of space, which is awesome. I no longer need to worry about getting it full and I can even copy all of my CDs to my PC now. I have a ton of CDs with music that’s hard to come by on streaming services, so that’s cool.

I think my husband will go collect the computer at the pick-up point near his work tomorrow. On Wednesday, the adaptive tech company is coming by to install JAWS, the screen reader, onto it. I called the company to let them know they’ll need to schedule the visit with me in the morning, as I’ll be off to Raalte at 2PM.

What’s been happening in your life lately?

Four #SoCS

My husband and I like the number four. The reason is that the Dutch word for four, “vier”, is also the Dutch word for “celebrate”. One day when my then boyfriend and I were walking in a forest near his home, we went up a hill and he proposed we celebrate getting on top of the hill with a kiss. A little later, we saw the number four written on the path or something and he said four means to celebrate with a kiss. This is how we ended up making up the word “fouring” for kissing.

We played a lot of card games back then. This was in 2008, when I was still inpatient on the locked psych ward. We didn’t really know what else to do. So everytime a four came up in our card games, one of us would say that meant we had to kiss.

We got married on the day we knew each other four years exactly. Actually, the wedding ceremony was at 3PM. That had been the time of our first date too. It wasn’t because we selected the time, but it was quite cool anyway.

I like to remind myself of these beautiful moments. My husband gave me this little bride and groom that had been on top of our wedding cake. He dug it up from the attic the day after we had a little argument last week about me thinking I might go into supported housing nearly two hours from him. I liked the reminder. I love my husband! I don’t want to ever leave him. I don’t want to live too far from him. My marriage trumps my need for good care.

This post was written for Stream of Consciousness Saturday.

Song Lyric Sunday: Desire/Lust/Romance/Passion

It’s Sunday and once again, I am participating in Song Lyric Sunday. Today, the theme is Desire/Lust/Romance/Passion. I am sharing a little song, which I already wanted to share several weeks ago when the theme was Fire or something like it.

In 2008 or 2009, my husband introduced me to Tom Lehrer. The first songs I heard were I Hold Your Hand in Mine and Poisoning Pigeons in the Park. For my 23rd birthday, I however got a CD with lots of songs by Lehrer. One of them is The Masochism Tango, which I am sharing here. I love the upbeat tune and the lyrics, of course.

Title: The Masochism Tango
Singer and Songwriter: Tom Lehrer

Another familiar type of love song is the passionate or
fiery variety, usually in tango tempo, in which the singer exhorts his partner to haunt him and taunt him and, if at
all possible, to consume him with a kiss of fire. This particular illustration of this genre is called
„The Masochism Tango”.
I ache for the touch of your lips, dear
But much more for the touch of your whips, dear
You can raise welts
Like nobody else
As we dance to the Masochism Tango
Let our love be a flame, not an ember
Say it’s me that you want to dismember
Blacken my eye
Set fire to my tie
As we dance to the Masochism Tango
At your command
Before you here I stand
My heart is in my hand . . .
(Yeechh!)
It’s here that I must be
My heart entreats
Just hear those savage beats
And go put on your cleats
And come and trample me
Your heart is hard as stone or mahogany
That’s why I’m in such exquisite agony
My soul is on fire
It’s aflame with desire
Which is why I perspire when we tango
You caught my nose
In your left castanet, love
I can feel the pain yet, love
Ev’ry time I hear drums
And I envy the rose
That you held in your teeth, love
With the thorns underneath, love
Sticking into your gums
Your eyes cast a spell that bewitches
The last time I needed twenty stitches
To sew up the gash
You made with your lash
As we danced to the Masochism Tango
Bash in my brain
And make me scream with pain
Then kick me once again
And say we’ll never part
I know too well
I’m underneath your spell
So, darling, if you smell
Something burning, it’s my heart . . . (hiccup)
‘Scuse me!
Take your cigarette from its holder
And burn your initials in my shoulder
Fracture my spine
And swear that you’re mine
As we dance to the Masochism Tango

I Got Approved for Long-Term Care!

Last Monday, I was so discouraged that I wrote a letter to myself motivating myself to keep going at least till 2021. I was in the process of applying for long-term care and I wasn’t expecting my funding to be approved until 2021. After all, my original application early this year had been denied. My support coordinator appealed for me, but I wasn’t expecting much out of it. The reason I had my hopes focused on 2021 is that by then, mental illness will no longer be excluded as a ground for long-term care, meaning that those with lifelong mental health conditions preventing them from living independently, will qualify.

Of course, I’m not just mentally ill, even if you see autism as a mental health issue (which it isn’t in my opinion). I am blind and have mild cerebral palsy too. I met some people at the CP conference who qualify for long-term care for just CP, even if it’s as mild as mine is. Then again, the rules have gotten stricter and those who lived in group homes or supported housing prior to 2015, qualify much more easily than those who didn’t, like myself. In this sense, my long psychiatric hospitalization works against me.

Two weeks ago, the lawyer in charge of my appeal with the funding agency (I didn’t have my own lawyer) said I probably didn’t qualify for long-term care. The reasons were complicated. From one person, I heard that the physician in charge of making medical recommendations was willing to recommend long-term care but was restricted by law because of my history of mental illness. From another, I heard that I couldn’t get long-term care because the physician couldn’t decide whether my primary disability is blindness, cerebral palsy or autism, so they decided not to qualify me at all. That’s rather weird, because they almost made it look like I would qualify with my exact limitations if only I didn’t have a psychiatric diagnosis on file.

I don’t know how they eventually managed to do it, but late Tuesday afternoon, the lawyer called my support coordinator to inform her I had been approved after all. I am so happy! I qualify based on blindness as my primary disability.

Now I feel weird. I know I should be happy and I am, but I feel also disconnected from myself. In a way, being approved for long-term care is an ending, in that I’ll (unless the laws change) never have to prove that I need 24-hour care again. On the other hand, it’s a beginning, enabling me to start looking for a group home. Because I qualify based on blindness, we may or may not be able to get me into a group home with my current care agency. After all, they primarily serve those with intellecctual disabilities. I prefer this agency though, so we may be looking into tweaking my care profile. If I can’t live with this agency, we’ll check out the two blindness agencies here in the Netherlands. One has housing about an hour’s drive from my current home, while the other agency’s housing is 90 minutes to two hours away. My husband said though to prioritize suitability of the group home rather than proximity to our current home.

I feel pretty distressed about telling my parents. They will be visiting me for my birthday at the end of the month, but I don’t know how far things will have moved along then. I don’t really know when to tell them. It’s okay though, I tell myself. I don’t need their approval.