#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.

Who Am I Right Now?: Exploring My Identities #AtoZChallenge

Welcome to day 23 in the #AtoZChallenge. I had a topic for my W post in mind for a few weeks, but then wasn’t sure whether to pick that one. I am doing so anyway. Today, I am exploring the things that make me me. My “identities” can, of course, refer to my alters too, but I covered that topic in my letter M post already. Today, I am exploring my different roles.

I am a daughter. My parents are still both alive. I was a granddaughter (and some would say I still am), though my last living grandparent died in 2018. I am a sister and an aunt-to-be, since my sister is 20 weeks pregnant.

I am a wife. I have been together with my husband nearly 11 years and married over seven. My husband is by far the most important person in my life. Through him, I am also a daughter-in-law and sister-in-law. My mother-in-law is the second most important person currently involved in my life.

I am a blogger. I’ve had one blog or another ever since 2007 and really have been an online writer since 2002. I am also an author, though I’ve had only one small piece published in an anthology. It makes me proud nonetheless.

I am an advocate. Though I don’t engage in as much activism as I used to about ten years ago, I still consider myself a disability, mental health and autistic rights advocate.

I am a believer. Though I subscribe to “something-ism”, it does help me to feel connected to a higher power.

I am mentally ill. I am autistic. I am blind. I am multiply-disabled. I am a benefits claimant. I am a service user at a day center for people with intellectual disabilities.

These last few identities may be the most defining of me when I tend to introduce myself. That’s why I listed them last here. I need to learn to focus on the others.

Share Your World (April 22, 2019)

For the first time in a long while, I’m once again participating in Share Your World. Today’s questions are very interesting.

I tried to write this post on my Mac, as I cannot copy the questions on my iPhone. I finally however decided to continue on my phone, as the WordPress editor is hard to use on the computer.

1. Was the last thing you read digital or print?
Digital. I am blind, so cannot read standard print. I rarely read Braille either, although I recently received a Braille letter.
2. Are you more an extrovert or introvert?
Introvert for sure. I definitely am not energized by a lot of interaction. I also prefer a few deep friendships to having a lot of acquaintances. That being said, online I can be more of an extravert.
3. How is your life different from what you imagined as a younger person?
Very. I am not sure there’s any resemblance, in fact. As a teen, I imagined being some type of university professor when I’d grow up. I for sure didn’t imagine doing day activities at a center for people with intellectual disabilities. I also didn’t imagine having a husband. The only thing I did imagine at the time was being a writer. I didn’t know about blogs at the time, but did know about online diaries. My online diary gradually morphed into my first blog.
4. Do you think about dying? Does death scare you?  Why or why not?

Yes, of course I think about it sometimes. I saw a man shortly before his death last January at day activities (a fellow client) and this did make me acutely aware of the finiteness of life. Death doesn’t really scare me, although sometimes it does.

Additional Gratitude Bonus Question:  Who has been the kindest to you in your life?

My husband. He loves me despite the fact that I can be quite blunt and a pain in the arse to be around.

Love: How I Met My Husband #AtoZChallenge

Welcome to the #AtoZChallenge day 12. Today I am going to share a positive story, because I am going to write about love. I have known my husband, Jeroen, for 11 1/2 years and love him to pieces. I want to share how we met in today’s post.

In September of 2007, I was living on my own in Nijmegen. I struggled a lot and felt extremely lonely. I at the time frequented a message board, where I posted that I felt alone. Jeroen was on this forum too. He had been wanting to expand his social circle, so he had decided to get to know some fellow forum members better. He read my blog, which I’d kept on WordPress since early 2007. From that, he decided he wanted to meet me. He sent me a PM asking to have a coffee or tea somewhere in Nijmegen. I accepted.

At first, I was unsure whether I’d be safe. What if Jeroen wasn’t the 18-year-old guy he claimed to be? To be honest, I didn’t know much about him from the forum even though he was an active member. He offered to meet me at the forum meetup in Utrecht, but I didn’t have the spoons to travel there, so I agreed to see him at the bus stop closest to university that the bus I knew drove by.

On our first “date”, we were both stressed. I fell off a step and dropped my coffee. When we sat down on a bench, he asked what type of music I liked. I answered “world music”, as I mostly listened to Latin American music.

After our first time meeting, he PM’ d me to tell me he had mixed feelings about it. So did I. But a few weeks later, he again PM’d me to ask whether we could meet again and I invited him to my apartment. That was probably a bit weird, but I knew no other place in Nijmegen.

When we had just planned our fourth “date”, I was admitted to the psychiatric hospital. I didn’t have his phone number, nor did I have Internet access. I gave my support worker my login details for the message board and asked her to contact Jeroen.

A few weeks later, my father called asking whether he could give Jeroen my phone number. I agreed. Jeroen had found my father’s E-mail address through the whois of his website (that he doesn’t do a thing with). I”m so glad he was (and still is) such a tech savvy person and didn’t give up.

It took us six more months from that point on to agree that we would be calling our involvement a romantic relationship. I am so glad I eventually agreed to love him back, as he’d been the first to say he was in love with me. We will be celebrating our 11-year anniversary of being a couple next month. We got married on the day we knew each other exactly four years on September 19, 2011.

Kids: Being Childless Sort Of By Choice #AtoZChallenge

Welcome to day 11 in the #AtoZChallenge. For those who followed me on my old blog last year, I chose “children” for the letter C post then. I can’t remember what I did my K post on and am too lazy to look it up, so I’m just taking the opportunity to talk about children again. I hate the word “kids”, but oh well.

You see, I have no kids. At 32, this is a bit abnormal already and it’s becoming more so as I age. The reason I don’t have kids, is complicated. Let me explain.

As a child and teen, I always thought I’d have children as an adult. Even during the time, in my mid to late teens, when I thought I was a lesbian, I thought it would be a given that I’d have children. I didn’t imagine a man in my life, nor did I think of how else I’d conceive, but I always knew I would have kids.

This changed after my major psychiatric crisis when I was 21. For the first year or so, I was busy with merely surviving and getting to see a future for myself other than suicide. Then, my post-traumatic stress symptoms started to emerge.

When I was 27, I made the conscious choice not to try to conceive. I had in the meantime met and married my husband and he agreed. He would even support me if I’d want to get sterilized and said I would most likely have no problem geting the procedure done, given that I’m multiply-disabled. He’s likely right, even though this is extremely ableist.

I know I, personally, couldn’t care for a child. This doesn’t say anything about other people with my combination of disabilities, but it is true in my case. Having made this decision puts me somewhere on the fence between childless and childfree. I am in communities for both on Facebook and find that I’m a little out of place in both. Over the years, I’ve moved more towards the childfree side, as I am realizing I don’t experience my biological clock ticking. Rather, my wish to be a parent is more based on societal expectations. As I once said, I’d want to be a Mommy blogger. Well, I guess that’s not the right reason to try for kids.

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?