Seven Things I Wish My Unsupportive Parents Understood About Me

Posted on by Astrid

I just read BPD Bella’s post about ten things she wishes non-borderlines knew about her. I have only some BPD traits and couldn’t relate to everything she describes. However, this post inspired me to do my own list. I’m dedicating this list to my parents by sharing some things I wish they understood about me. For those who don’t know, my parents are particularly unsupportive of my disability experience.

1. I am not “just blind”. I know that many blind people like to minimize the impact of their disability, to prove that they’re competent adults, blindness and all. My mother at one point told me about one of my sister’s college friends, who is blind. She then remarked she wished every blind person had the same abilities. That’s not how it works. But guess what? Sighted people vary in their abilities and difficulties too.

2. My needs are valid. I wasn’t being “manipulative” when I threatened suicide in 2007 while living on my own. I was desperate. If I had really been able to cope, I would have. Similarly, I’m not being “manipulative” by trying to get into supported housing now. No, I’m not in a suicidal crisis on a daily basis anymore, like I was in 2007. However, I want to prevent it from getting that far.

3. If you want me to have a skill, teach me. This is too late, since my parents should’ve gotten this message when I was young. They expected me to be able to live fully independently right out of high school in 2005, though I didn’t have most daily living skills. I appreciate how hard it was for them to teach me growing up, but that’s no excuse to drop the ball.

4. A family is not a business. One of the reasons my parents didn’t teach me independence, was that it got in the way of them running their family efficiently. That’s not an excuse.

5. Not everything is my IQ. My parents are convinced that I am such a genius intellectually that I should be able to use it to overcome all of my difficulties (except maybe my social ineptness). Also, this genius IQ enables me to manipulate the world into believing what I want them to believe, which is apparently that I’m weak and dependent and need lots of care. (I am not trying to say needing lots of care makes a person weak and dependent.) No. I would’ve graduated university and gotten a job if I could.

6. Depression is real. Some professionals believe that my childhood irritability stems from depression. I’m not sure that’s entirely true, but it’s possible. I definitely suffer from depression on and off in adulthood. My parents instead say it’s an attemtp on my part to make other people feel miserable, presumably because I refuse to accept the fact that I’m blind. Well, going blind can be traumatic and is not something you “just need to accept”.
Besides, depression is an illness, not a weakness or choice. When depressed, I do make other people feel miserable, but it’s not because I want to.

7. I am an adult, I make my own life choices. In 2006, my parents threatened to abandon me over my wanting to delay university one year. In 2008, they showed up at my hospital ward to take me home with them, because they didn’t agree with the social worker’s plan for my follow-up care. I’m pretty sure that, if I go into supported housing, they’ll try to guilt trip me into not doing it. I couldn’t handle that in 2006. I could in 2008. I am pretty sure that, should they decide to abandon me for good this time, I’ll be able to handle it.

I see this list sounds rather accusatory towards my parents. It is. I don’t even intend for my parents to read it. I know that I’m past setting things straight with them. They won’t change. Besides, my childhood and early adulthood won’t change. I can change to an extent, but I doubt this will lead me closer to my parents. I don’t care.

Share Your World-Revisited (September 24, 2018)

Posted on by Astrid

I am still not very motivated to write, even though a million thoughts are floating through my mind. To get something onto this blog for today anyway, I’m participating in SYW-R, as I affectionately call the revisited Share Your World hosted by Sparks. Here are this week’s question.

Last week I asked a question about favorite beverages and the overwhelming favorite was coffee. If you drink coffee, how do you like it best? Hot, cold, iced, with cream, with sugar or black as black? If you don’t drink coffee, how has that beverage impacted YOUR world?
I do drink coffee and have since I was about six-years-old. However, I still get a hideous grin on my face whenever I drink it, as if I think it’s disgusting. To be honest, I don’t really like it, but I guess I’m addicted. I prefer my coffee black.

In your opinion, what’s the greatest invention of our age?
The computer or smartphone. I am still not the type to want to be connected all the time. I used my landline more than my cellphone until I was in my early twenties sometime around 2008. I didn’t get my first smartphone till a little over a year ago. That being said, I do love my little iPhone SE. However, I must say I still use my nearly 4 1/2-year-old Acer laptop far more. I still use Windows 8.1 with classic shell so it looks like Windows 7. I’ve been wanting to buy a new laptop and start using Windows 10 for a year, but am still waiting for my health insurance to cover a new screen reader.

Global warming? Reality or myth?
Climate change is probably real and to be expected with how much we’ve polluted the Earth over the past two centuries. I’m not knowledgeable enough to understand in what direction scientists believe now that it’s headed though. To be honest, not having children of my own makes me a little careless about this whole thing.

Are you an explorer or more a home body?
Definite homebody! I hate traveling.

What were you grateful for this week?
My amazing support workers, nurse practitioner, in-laws and most importantly my husband.

Struggle #WotW

Posted on by Astrid

I want to write so bad, but I’m struggling. Struggling to get myself motivated for writing. Or for anything. Struggling to write coherent sentences. Struggling with my thoughts floating through my mind. Struggling with pretty major depression. I’ve been in survival mode just a bit too long. Now I’m ready to crash.

I am participating in Word of the Week (or #WotW) for the first time on this blog. My word for this week isn’t a shiny, happy one. It’s “struggle”.

This week was an eventful one, yet nothing really did happen. If that sounds like a contradiction, it’s because it is.

Early in the week, it became obvious to me that my depression wasn’t lifting like I’d hoped it would. I mean, I’d hoped that, once my support coordinator was back from vacation and I’d have home support three times a week again, I would feel better. I didn’t. I felt worse.

Thankfully, my support coordinator offered to come by on Tuesday for an extra hour of home support. I am so happy she did, for I didn’t know how else to make it through the day.

On Wednesday, my support worker came by in the afternoon. We ran some errands and I thought I’d do better that day. Not so. In the evenng, when it became apparent my husband wouldn’t be home till past 7PM, I had a meltdown.

On Thursday, I slept in till past noon and again lay in bed for a bit at 2PM. I could’ve been in bed all day, but my support coordinator would be here by 3PM. Thankfully, she was able to motivate me to go for a walk. That was when I decided to start the process of hopefully getting into supported housing. I don’t have my hopes up, of course.

I know that if the powers that be see this post and conclude from here that I’m just struggling with depression, they’ll not provide funding. After all, treatment precludes support. Besides, mental illness only qualifies you for temporary support. So I’m hoping the powers that be will see my needs beyond depression. I’m also blind and have a brain injury and autism, after all.

Interestingly, I had no problem convincing my psychiatric nurse practitioner that I do need 24-hour support. He was one of the first to ditch the dependent personality disorder label I’d been given by my last institution psychologist. As he said when I called him on Friday, I may be a little dependent, but that’s normal because, duh, I’m blind. I’m not sure that’s entirely true, in that to my knowledge most people who are “just blind” don’t need as much support as I do. However, I’m not “just blind”.

The Reading Residence

Leaving the Path Paved for Me

Posted on by Astrid

Today’s Finish the Sentence Friday is a stream-of-conscious writing exercise on the prompt of “leave”. I have not been inspired to write much lately, not even snippets that aren’t “blog-worthy” but that I could’ve published here anyway. Yet this prompt immediately turned on a lightbulb in my head.

Yesterday, I made the decision to schedule an appointment with the care consultant for the agency I receive home support and day activities from. We’re going to discuss my options regarding going into supported housing. There I said it and now I’m hoping my parents never read this blog.

Nothing has been decided yet, except for the appointment with the care consultant having been set for October 4. It isn’t certain that I can get funding for supported housing. I’m not getting my hopes up too high, as there are huge budget cuts to long-term care for people with lifelong disabilities, which is the path I want to go. I could also go the community support route, where I could go into supported housing for the mentally ill temporarily. That most likely wouldn’t be of much benefit, as it’s heavily focused on “rehabilitation”.

However, assuming I can get into supported housing one way or the other, this will mean I’m leaving my husband. Not as in divorce, as living together is not required to be married here in the Netherlands and my husband has said he doesn’t want to leave me. In fact, he supports me every step of the way.

It also, however, means leaving my passing-for-non-disabled self behind. It means leaving the path paved for me by my parents (and my last institution psychologist). I’ll be a huge disappointment to them. I have been thinking of how to break the news to my parents. Thankfully, I can wait with that until the point, should it come, where I’m actually moving.

Since I scheduled the appointment yesterday, I’ve been flooded with memories. I told my support staff at day activities and that got me talking about the time I lived independently in 2007. At the time, I considered getting into supported housing too, but my support coordinator said I couldn’t be in their supported housing with my challenging behavior. This may be the case with my current agency’s supported housing too. That’s one advantage of independent living. After all, no matter how much I struggle in independent living, my husband won’t kick me out for needing too much care.

What’s Holding Me Back to Write from the Heart?

Posted on by Astrid

I have not written much over the past few days. It isn’t because I didn’t want to. In fact, I’ve been wanting to write a lot, but couldn’t find the right venue. I mean, if I want to write for this blog, the content has to be “blog-worthy”. Not because that was my original intent with this blog, but because I’ve become (too) focused on my audience.

“Blog-worthy”, in this respect, means being at least 300 words long, being well-constructed and not being too personal. I mean, yes, I write a lot of very personal posts by soe more general bloggers’ standards, but I still wish I could express myself more freely.

In particular, I wish I felt okay for all of the alters to write using their own names. I originally intended this blog specifically for that purpose, but I feel like I might attract negative feedback if I do this. I mean, dissociation is not your everyday mental illness.

That then has me gotten looking for private journaling apps on the iPhone and PC. I spent most of this afternoon downloading, trying and then deleting at least a dozen apps. None meet my needs. Honestly, what I’m really looking for is something that looks like WordPress but is completely private. Yes, I know I could create a protected blog, but that still feels “kind-of-public” to me.

Then again, is it truly the fear of exposing my thoughts to the public that holds me back? Or is it my inner critic holding me back regardless? I mean, I noticed an alter – a newly-emergent one -, trying to write to an E-mail list a few days ago, but she kept saying that she cannot be her.

Of course, an E-mail list still has an audience, but this was a DID list, so all members are supportive of alters posting. And yet, I feel weird. What it all boils down to, I think, is that I want people to know my thoughts, but I want people to be supportive even more. Then again, how can I elicit support if I don’t share?

So I guess from now on, I’ll try to let go of my “blog-worthiness” rule and try to write from the heart. Of course, there are still aspects of my life that I cannot share, but I cannot share those at all.

What I’m Excited About for the Coming Week

Posted on by Astrid

Today, DM over at Pointless Overthinking asks what excites you about the future. This is a really timely question, in a kind of ironc way. You see, I was pretty badly depressed most of the day and found looking even an hour ahead hard. Now that I have gotten some more clarity of mind, I am going to make a list of things that excite me at least a little bit about the upcoming week.

1. My support coordinator coming over tomorrow. I texted her this afternoon to let her know I’m not feeling that well. She had just come back from vacation this morning, so I felt pretty guilty for having texted her, but the feeling of despair was stronger. At around 6PM, she called me back. She would originally only visit me on Thursday, but she offered to see if she could come tomorrow too. I said I’d much appreciate that. At 4PM, she’ll be here.

2. The good weather forecast. It’s said to be sunny and around 27 degrees Celsius here tomorrow.

3. Celebrating my seventh wedding anniversary on Wednesday. My husband already announced that he’s going to take pizza home after work then. I love pizza, particularly from American-style pizza chains like Domino’s and New York Pizza.

4. Horseback riding on Friday. Do I need to say more? Oh, I love Angie!

This isn’t all that much, but I’m still a little bit more cheerful now that I’ve written these things down. It isn’t that I’m magically no longer depressed. However, like gratitude for the things that happened in the past, excitement for things that are going to happen in the future, may help some.

Preverbal Trauma

Posted on by Astrid

Today, I wrote in a Facebook group about preverbal trauma. I know for a fact that I endured a lot that could have caused PTSD from birth on. I was born prematurely, spent the first three months of my life in hospital and was hospitalized several more times before the age of five.

About seven or eight years ago, I started experiencing body memories that I immediately associated with a medical emergency that I endured at age four. At the time, my trachea closed up and I as a result had difficulty breathing. I never completely repressed that memory, always knew that it’s something that actually did happen.

So I wonder if I made said association because it makes more sense than connecting the body memory to preverbal trauma. I mean, preverbal trauma is very controversial, because people do not form that clear memories until the age of three. That doesn’t mean people cannot be affected by preverbal trauma. It just means the memory is hard to recover.

I have alters. About six years ago, an alter emerged that is constantly curled up in a fetal position. We don’t know more about her. A seven-year-old alter who also emerged around that same time talks about that alter as a baby in the incubator. Now of course babies in incubators are not in the fetal position, so yeah.

Still, it all makes me wonder whether I’m making all this trauma stuff up. I mean, yes, I was born prematurely. Yes, I spent three months in hospital and had repeated re-admissions before the age of five. But my parents say that until age seven, I was completely fine and carefree. I mean, it’s not like everyone who endured trauma develops PTSD. So could it be I’m just making this whole preverbal trauma thing up?

In a preemie parent support group, I asked whether anyone has experience with their child getting EMDR for medical trauma. I have always wondered whether EMDR could help me. It was recommended when I had just been diagnosed with dissociative identity disorder in 2010. Then I heard it’s not recommended unless you’re very stable otherwise. Well, the consultant I talked with on Monday said that’s no longer the case. So maybe I could benefit from it. Several parents responded about reading their child a “life story” about their birth and hospital stay while the psychologist did the EMDR. Since my parents aren’t very supportive, I cannot ask them to help me with this, but I could create my own life story based on what my alers tell me.

Posting Everyday #SoCS

Posted on by Astrid

Today’s Stream of Consciousness Saturday prompt is “post”. I want to write about the challeng in posting everyday. I have been meaning to write at least two posts at least some of the days of the month, but don’t seem to get that done.

Like, when I started this blog in late July, in my first week, I posted thirteen times. That’s two posts a day almost everyday. Now I’m finding it hard to post everyday at all. It’s probably partly because I don’t have much of anything planned to write about. Like, I want to write from writing prompts, but then I can’t pick one.

In October, I plan to follow #Write31Days, a challenge to write everyday. That was a success on my other blog once, in 2015.

By the way, I wonder when I’ll go call my other blog my “old” blog. I still cling to it to some degree, but don’t feel like writing on it at all. I feel much more comfortable writing random ramblings than going with a partiuclar theme or writing “serious” content.

That being said, I have already picked my theme for #Write31Days. No, I won’t disclose it yet.

Last year, I did #Write31Days on autism. I was fully committed to making it work, but on October 4, landed in hospital after a medication overdose before I’d been able to write my post. I could’ve tried to catch up, but had lost my mojo altogether then. I hope that doesn’t happen this year. Then again, my husband has my medication locked away, so I’m unlikely to take another overdose.

Weekly Gratitude List (September 14, 2018) #TToT

Posted on by Astrid

I’m still not doing very well. Depression seems to be sinking in deeper. Because it’s only been a few weeks, I’m still hoping I’m just having a bad mood for a bit.

Kristi shared in a comment on my #TToT last week that her friend who started the link-up, did so to cope with her depression. For this reason, I’m trying to list the things I’m grateful for again too.

1. A good consultation meeting on Monday. Like I said on Monday, I discussed my options for getting appropriate care. An ideal situation would be that my husband and I could live together but close by a care facility. Since this is most likely not possible, I may have to choose between managing as I do now or going into supported housing. As it turns out, my husband is supportive of me regardless of the outcome. He says he’ll stick by me even if we can only see each other during the week-end.

2. My mother-in-law. On Tuesday, I was feeling so depressed that I didn’t really feel safe staying at home alone. I didn’t have my PRN medication at hand, so couldn’t just sleep it off either. I texted my mother-in-law and she offered to take me to my in-laws’ house. I feel so relieved that she did.

3. My in-laws’ dog, Bloke. While at their house, my mother-in-law took me to walk him. We joke that he’ll be a trained guide dog by the time he’s eight. He is a labrador retriever, so the right breed, but he’s five already and pretty disobedient.

4. My physical health. I had a nasty cold early in the week, but am feeling somewhat better now. Not great, but good enough to go on walks and to exercise again.

5. Nice staff at day activities. I was able to talk some with them and this morning, one took me on an early walk. One of the staff can be a bit blunt and I’ve had a few issues with her, but overall everyone’s nice.

6. Drinking a nice latte with my support worker. Because my support coordinator is on vacation – she’ll be back next week -, my support worker offered to take me on a special activity yesterday. We drove to a cooffee house in her town. I’d never had a real latte, just instant cappuccino. It was really nice.

7. French fries. Both on Sunday and today, my husband and I ate fries with a snack for dinner. Don’t tell the dietician – not that I have one -, but it was delicious. Overall, I’ve not been watching my diet and have been overeating way too much this past week. Let’s hope this depression thing lifts and I will be arsed to eat healthfully again.

Linking up with #TToT again.

The Greatest Moment of My Life

Posted on by Astrid

Today’s Question of the Day on Pointless overthinking is about the greatest moment of our life so far. I already briefly shared it in the comments, but I want to expand on my answer.

The greatest moment of my life so far is the moment my now husband proposed to me. This was June 4, 2010. I was 23-years-old and struggling with the aftermath of a traumatic childhood unfolding itself to me. My dissociative symptoms had become too unbearable to hide and I was slowly beginning to trust my staff at the psychiatric hospital resocialization unit with my feelings. That day, my named nurse invited my then still boyfriend into a room with me and her to explain some of my symptoms.

After that, my boyfriend took me to the place we had first met each other on September 19, 2007. It was a bus stop near the university’s dentistry department that I’d gotten off the bus from my home that day in 2007. Now, they were working on the road there, so we couldn’t sit at the bus stop. Instead, we sat down in the grass and my boyfriend proposed to me. I at first thought he was joking so I replied: “So you think that’s cool then?” He said yes and went on to propose we get married on September 19, 2011. “Mind getting married on a Monday?”

We chose our wedding date based on the fact that it was exactly four years since we first met. Four, for us, is a code word for kissing, because of a kind of wordplay in Dutch.

A week later, my boyfriend asked whether I’d informed my parents yet that we were getting married. I hadn’t, still thinking he had been joking. As such, I never said an official “Yes” to his proposal. That must’ve felt terribly hurtful to him. I told my parents, sister and grandma that evening.

My family’s responses were not overly supportive. My sister said we were a bit young (I would be 25 and my husband 22). My parents said we should go live together first. This is not a requirement for married couples anymore here in the Netherlands. We wanted to marry each other for no other reason than to prove our love. My parents felt, as did some of my professionals, including the psychologist who kicked me out of the hospital to live with my husband, that love didn’t mean much if you don’t live together as a couple. Fine by me, you’re entitled to your opinion, but we’re entitled to ours.

PoCoLo