Expressing Faith By Expressing Anger

Last week, for some reason, I felt called to listen to a church service. When I do, I usually listen to United Church of Christ services, though occasionally I check out Protestant Church in the Netherlands services locally too. The service I ended up listening to was delivered at Mayflower Congregational UCC in the Oklahoma City area. It was titled “disorientation”.

The topic was how many Christians think they’re not healthy or whole enough to attend church. Many Christians are taught to believe that we shouldn’t show our distress or be angry with God. Though I grew up in an atheist home, I too was taught not to complain or be angry. “Gets angry easily” was often written about me in psychological reports. This may have been so, but anger in itself isn’t bad.

Rev. Lori Walke, in her sermon from May 10, talks about the psalms, nearly half of which are psalms of lament. In one of the psalms she discusses, psalm 13, David cries out to God in anguish:
“How long, Lord? Will you forget me forever?
How long will you hide your face from me?
How long must I wrestle with my thoughts
and day after day have sorrow in my heart?
How long will my enemy triumph over me?
Look on me and answer, Lord my God.
Give light to my eyes, or I will sleep in death,
and my enemy will say, “I have overcome him,”
and my foes will rejoice when I fall.” (Psalm 13:1-4 NIV)

Rev. Walke goes on to recite the rest of the psalm:
“But I trust in your unfailing love;
my heart rejoices in your salvation.
I will sing the Lord’s praise,
for he has been good to me.” (Psalm 13:5-6 NIV)

This expression of anguish shows, according to Walke, that David deep down still has faith. After all, if he didn’t believe his anger would do anything, what good would there be in expressing it? As such, those who hold their anger inside and keep silent, usually are more hopeless than those who cry out.

This is why Walke invites us all to take our troubles to church. We don’t need to put up a happy face all the time. Indeed, in our expression of anger, we also show an expresssion of faith.

This totally struck a chord with me. I was taught as a child not to express my anger. Like I said, it was said about me that I was angry too easily. When I landed in the mental hospital at age 21, I even for a while had the unofficial nurses’ “diagnosis” of “angry and dissatisfied”. While there definitely was some truth to this, stuffing my anger only fueled my hopelessness. It was in my expressing my despair that I also showed that deep down I still believed in a good outcome.

Joining in with Let’s Have Coffee.

When I Was Five

This week it’s 29 years ago that I spent a week in the children’s hospital with a collapsed trachea. It closed up on the night of April 28, 1991, the night after we’d celebrated my mother’s birthday, two months before my own fifth birthday. I was unquiet all night or so I’m told, getting up to go to the bathroom a dozen times. Eventually, my parents discovered what was going on and I was rushed to the hospital.

Thankfully, my trachea opened again within a day or two. I don’t know whether I had to be on a ventilator. In fact, I remember very little of these first few days. Then, on May 3, I had surgery to take out my tonsils and adenoids. That surgery had been scheduled for May 21 at another hospital anyway, but the children’s hospital could fit me in earlier now that I was there anyway.

After surgery, I had to stay in the hospital for another few days because I had a breathing tube inserted. That is, I’m not 100% sure the breathing tube was before or after surgery. I remember trying to talk through my tube, which was pretty much impossible.

This was probably also the time in hospital that my parents brought me their supermarket’s brand of peanut butter to eat, as I wouldn’t eat the premium brand the hospital had. Can you tell I was spoiled or autistic or both?

Finally, I got home on May 7. I was already a calendar freak, so I actually remember this without having been told.

As I write this, my inner five-year-old is trying to speak up, but she can’t. I don’t know whether this hospital stay was particularly traumatic for me, even though the going to the bathroom compulsively became a habit of mine in my teens. I may have made Lisel (that’s my inner five-year-old) up, because after all I remember this particular hospital stay so well.

I do think falling ill in early 1992, was more of an adverse childhood experience for Lisel (or me, if you think Lisel is made up). I remember I had some form of the flu, but in my own memory, it wasn’t entirely medically explained. My parents will probably say I’m trying to find clues that aren’t there so am making them up. I mean, they never talked about this experience when, in my teens, I was trying to remember when my negative mood started. They claim, as did I at the time, that it started when I was seven and having to learn Braille. In other words, I was going blind and I knew it but refused to accept it, so was becoming defiant to show a middle finger to the world. It’s easy to say it doesn’t matter. In a way, it doesn’t, but too often, I feel my parents are hiding the truth from me as a way of denying that I had significant mental health issues before the all-important age of seven. I mean, if my problems started at seven, I cannot possibly be autistic or have a dissociative disorder or anything originating in early childhood, right? Besides, I could have been old enough to be manipulative.

Am I being manipulative indeed? Or am I an early childhood trauma survivor? I don’t know and I’m not sure Lisel knows the answer.

Joining in with V.J.’s Weekly Challenge.

Mother As Place of Attachment

It’s already been eighteen months since I last wrote about what I read in The Emotionally Absent Mother. Still, the book hasn’t just sat there. I struggled to move on from Mother As Source. The next section is titled Mother As Place of Attachment. Somehow, this is a really hard section. I don’t really know why. I mean, yes, part of the reason I struggle to move on in writing about this book, is that I do it publicly and what if my parents read this? Then again, I don’t really care. I’m in groups on Facebook for childhood emotional neglect and emotional abuse survivors too. Though the member list of private groups isn’t available to non-members, I’m pretty sure they know somehow. Honestly, regarding this, I care more about my husband’s opinion than my parents’.

But there’s something specifically about this section that is hard. I’m not even sure what. Maybe it’s just that I don’t have a lot of early memories of my mother. I attribute this to my father being the homemaker and primary caretaker in our household. But fathers can “mother” too.

The first question asked in the section on your mother as place of attachment, is to rate your sense of connectedness to your mother on a scale of 1 to 10. The next question is how your sense of connectedness evolved over the years.

Well, with my mother, I am generally at a 5. I don’t feel she “gets” me, but we do get along okay. Like I said when discussing mother as source, I don’t feel that I’m made of her, but she isn’t from another planet either. Or maybe she’s from Venus. I mean, we’re not constantly disconnected.

Over the years, my sense of connectedness to my mother has stayed the same. I never quite felt like we had a strong bond, but I didn’t feel totally alienated either.

My father is a different story. We had a strong connection, maybe around 8, when I was a child. Now we’re at a 3 at best. Like I said in my mother as source post, as a child, I saw my father as the embodiment of intelligence, success and well what other positive characteristics are there really? When I got to question his having sole ownership of the truth at around age 15, things started to change. Or did things change earlier on? I’m not sure.

Another question is about bodily contact. This is where I get to question whether the schism occurred earlier than age 15. When I was a young child, my father definitely did give both my sister and me lots of opportunities for bodily contact. I remember when my sister and I were little, my father would wrap us in a towel and drag us to our bedroom. He called this “swordfish” and my sister always asked for “sordsish”.

My mother says that, around age 7 or 8, I stopped wanting to sit in my parents’ lap. From then on, bodily contact like hugging or good-night kisses was very ritualistic. I remember around age 11, being forced to read a certain number of pages in Braille if I wanted a good-night kiss. This at the time felt very distressing. I haven’t studied emotional development except in the context of intellectual disability, so I have really no idea whether it’s normal to still want good-night kisses at that age. I guess not.

As a side note, I did initiate physical contact such as hand-holding with practically every adult until I was at least 12. In my psych eval report from age 11, the ed psych notes that I claim not to need a cane but grab her hand immediately anyway. That first bit was no doubt related to my difficult accepting my blindness, but I don’t think the second bit is fully. Even as an adult, I truly crave physical contact and am a bit indiscriminate in who can give it to me. I mean, I am pretty clear that no male staff can provide me with physical comfort (or help me with personal care). With regards to female staff though (and the entire current staff of my home is female), I do accept physical comfort. I honestly don’t know how my husband feels about this.

PoCoLo
Keep Calm and Carry On Linking Sunday

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.

#WeekendCoffeeShare (August 25, 2019)

It’s Sunday, yay. I am once again linking up with #WeekendCoffeeShare. I just had a cup of green tea and a glass of water with my evening meds. Let’s catch up.

If we were having coffee, I’d share that I am mostly excited. On Tuesday, I heard through my support coordinator that I’d been accepted into a long-term care facility. It’s the one in Raalte that I’ve shared most about. Raalte is a little over an hour’s drive from my current home and nearly 1 1/2 hours from the house we’re buying, but so far my husband seems okay with it. He asked to see the place, so we were planning on driving there this week-end for a quick look around the grounds. Then the weather got in the way, as it’s too hot to drive for that long.

If we were having coffee, I’d also update you on the house-buying process. The financial aspect is nearly finished, so most likely it’ll indeed all go through.

If we were having coffee, I’d share that my parents were in the area today. My father bought some type of outdated physics measuring device from when he was in university or so it seems. We met our parents near the house we’re buying. They seemed content with it.

If we were having coffee, I’d share that we (as in, multiple me) are still feeling a little conflicted about the whole thing. I guess it’s mostly our wish to conform to our parents’ image of us. We could finally show off something about ourself, being homeowners soon, and yet we’re choosing to live in long-term care instead. Of course, I haven’t told my parents yet, but they’ll find out sooner or later anyway.

If we were having coffee, I’d then proceed to talk up some light-hearted stuff. I’d share what I’ve been reading (look for a post on that tomorrow). I’d also share that I’ve been enjoying various blogging prompts over the past few weeks. I love venturing out into new territory with stream-of-consciousness writing and trying my hand at poetry.

How have you been?

It’s My Choice

Yay, I got accepted into a living facility. The one in Raalte that I visited about six weeks ago. I will hopefully move before I’d otherwise move to the house my husband and I are buying in October.

It is mostly very exciting. I love the place and am really glad that the physician, psychologist and the team all agreed that I’d be a good fit for the place.

But… There is of course a but. I haven’t told my parents yet. I told them I got long-term care funding, but told them it makes it possible for my husband and me to live together wherever we want, not being restricted by our local authority. It could do that too, but that’s not the plan. And I didn’t tell them I’m moving into a care facility.

They will hopefully say that it’s my choice. That’s the best response I can get. Not that they support me, but that it’s my choice and I’m an adult so I’m allowed to make that choice. After all, they still feel I don’t need 24-hour care. They still feel that I’m just blind and extremely intlligent and using my IQ to manipulate the world into providing me care.

Well, so what? Of course, I don’t want to be manipulating everyone into providing me care. I don’t want to be a little attention-seeker who thinks the world owes her a living. I wish I could snap out of my need for care and live a successful life by non-disabled standards.

At the same time, maybe if I didn’t care that I’d have to be sedated to the point of sleeping all day, I could do with less care than I’ll be getting in the living facility. As someone once asked, how can you literally need 24-hour care, since you’re (hopefully) sleeping during the night? This person was by no means trying to suggest that sedation could lessen my care needs, for clarity’s sake, but it could. And I’m making a choice not to sleep the day away. If you think that’s me being manipulativve, fine by me. That’s your choice.

I am writing this post for today’s Daily Addictions. The prompt is “Choice”.

Working On Us Prompt: Self-Care and Personal Hygiene

This week’s prompt on Working On Us is about self-care. I initially thought of self-care as those things we do to pamper ourselves, but then when I read the questions, I realized Beckie means basic self-care. You know, personal hygiene, such as showering or brushing your teeth.

I definitely have always had trouble with this. Part of it may be due to my lack of awareness of my appearance, which may be due to both blindness and autism. However, the fact that I don’t always shower or brush my teeth regularly, certainly isn’t.

I have always had trouble with proper personal care. When I was about fourteen, my high school tutor got complaints from my classmates that I smelled a lot of body odor. He told me I really had to develop a personal hygiene routine, but didn’t explain how to go about it. He was my PE teacher and said that he personally showerd twice a day. So I initially thought I had to do that as well, so the next day, I jumped in the bath at 6AM. My parents were not amused. With my parents, I finally agreed on a routine of baths or showers three days a week, on Sunday, Tuesday and Thursday evenings. That way, if I went to school, it’d never be more than 48 hours since I’d had a shower or bath.

My parents still didn’t explain how to wash myself. Honestly, now that I’m 33, I still get told by my husband at times that I don’t do it properly.

The problem of course wasn’t just that my parents didn’t teach me. After all, presumably my sister knows all about hygiene. It was also that I had an aversion against personal hygiene activities. Here is where my mental health is involved. Like, I have executive functioning issues on the best of days, making a “simple” shower very difficult. When I’m depressed, I cannot cope with the stress of having to shower.

My lack of self-care wasn’t even picked on when I was first assessed by a psychiatrist. Maybe he did notice I smelled, or maybe that particular day my body odor wasn’t too bad or I’d had a shower. If he did notice, he didn’t tell me so or write it in the report. Neither did any of the next so many psychiatrists and psychologists I had. I only found out that my psychologist at the resocialization unit in Nijmegen had noticed because it was written in my long-term care application at the time, that I didn’t get to see until we applied again last year.

As for brushing my teeth, I hated toothpaste. I still do, but at age 18, finally forced myself to use it. I never brushed my teeth properly until I got an electric toothbrush for my birthday this year. Now I’m still not sure I do it right, but I at least brush for the required two minutes. Interestingly, the elctric toothbrush is less horrible sensorially than the handheld one.

I find it interesting that, though lack of personal hygiene is part of an assessment of mental functioning, so few mental health practitioners take the time to discuss it with their patients. Like, when I was in the mental hospital, no-one offered to teach me personal hygiene. Not even when the dentist recommended I get help brushing my teeth. They said it was my responsibility. I really hope that, when I’m in a care facility for people with developmental disabilities, that will change.

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.

Working On Us Prompt: Suicide and Suicidal Thoughts

I have lots of things I want to write about, and yet all I do is sit behind my computer and try to figure out which feed reader would be best (or least bad) on my Windows PC. I’ve yet to make a final decision, but I’m frustrated with it for now.

I’m joining in with Beckie’s Working On Us Prompt again. This time, the topic of discussion is suicidal ideation and suicide attempts.

As regular readers of my blog know, I do experience suicidal ideation on a regular basis. I have in fact lived with re-occurring suicidal ideation ever since the age of seven or so. My most severe suicidal break however was in 2007, when I was 21. Ironically, my parents thought that, since I had had suicidal thoughts on and off ever since age seven, I must not be serious and it all must just be “for attention”. Well, let me be very clear on this: suicidal thoughts are no fun and, if they ever happen “for attention”, there probably is a very good reason the sufferer is seeking attention.

I had never attempted suicide when I had my break in 2007. This break too involved “just” threats. However, it doesn’t mean I wasn’t genuinely struggling. I genuinely thought death was my only option. Same when, in 2002, I wrote a goodbye letter but had no idea how to go about actually taking the final step. People commonly say that, if you truly want to end it all, you will and, if a suicide attempt fails, it must not have been serious. That’s not necessarily true. People die from impulsive suicide attempts and people who’ve tried to kill themselves many times and are adamant they want to die, may still be alive.

In 2007, I was hospitalized, because my suicidal ideation was so serious that I needed help for it. That is, because I was suicidal due to be overwhelmed living independently and going to university, it helpd already to be taken out of the situation. That doesn’t mean my suicidal thoughts were gone immediately. That took at least three months and they’ve returned frequently since.

I did not actually get much help overcoming my suicidal thoughts. When I was on the locked unit, I had no therapy and no medication other than PRN oxazepam. I started therapy at the resocialization unit, but it was mostly just supportive.
In 2017, after my discharge from the psychiatric hospital, I made two suicide attempts by overdosing on medication. I am hesitant to call them suicide attempts, because both were impulsive and I’m not sure my intent was to die. I was most definitely depressed though. My suicide attempts were “for attention”, yes, but I had a very valid reason to seek attention.

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.