The Most Important Milestone

This week’s prompt for Reena’s Exploration Challenge is “Milestones”.

I am a big calendar girl. As such, I always remember important dates. As a teen, I used to commemorate an important event in my life at least once a month. For example, September 24, 1999 was the day I realized I hated mainstream secondary school and I remembered it for several years afterwards. Similarly, on November 2, 2001, I was in crisis. Same on November 2, 2007 and I was sure the reason (or part of it) was the day (Friday) and date. I still to this day commemorate the day I landed in the psychiatric hospital, even though it’ll have been fourteen years this year.

I realize now that all of these are negative. Don’t I have positive anniversaries? Sure I do. September 19 is the day my husband and I first met (in 2007) and the day we got married (in 2011). On May 7, 2008, we started officially dating and on June 4, 2010, my husband proposed to me.

Then there is the day I was approved for long-term care funding, also June 4 but in 2019. Finally, the day I moved into the care facility, September 23. I only now realize that there were twenty years minus a day between the important event that defined my teens and the important event that I hope will define at least most of the rest of my life.

Okay, that makes me feel ashamed. After all, shouldn’t the most important milestone of my life be the day I met my husband or the day we got married? It probably should be, but right now, honestly, it isn’t. Sorry, hubby.

Runaway #SoCS

When I was still in the psychiatric hospital, I’d run off often. At the locked unit, this was dealt with by introducing seclusion and restraining measures. On the other hand, at the unit I resided at later, I was made to be accountable myself. This meant that staff wouldn’t go after me if I ran off. They believed that, if I got lost enough times, I would unlearn to elope. I didn’t.

I am a truly frequent runaway. Always have been. When I still lived with my parents, I would often run away too. Same when living independently. I had frequent police encounters because of this. They would invariably call the crisis service, who would refer them back to my home support team. They all had no idea how to handle my elopement.

Then, when I went into long-term care in 2019, I still ran off a lot of times. I usually didn’t get far, as my staff would come after me. I also did get some restrictive measures, such as a sensor that alerts the staff when I leave my room. The door of my care home is locked at night because of my elopement risk too. (The other clients can’t work the key and most aren’t safe outside of the home alone either.)

Since my one-on-one support got introduced last December, I hardly ever run away. It’s been a true blessing. Sometimes though, I still wonder whether I’m indeed just manipulating, like the people in the psychiatric hospital would say, and need a lesson in accountability.

This post was written for Stream of Consciousness Saturday or #SoCS, for which the prompt this week is “Run”.

Not Quite California Dreamin’ #SoCS

SoCS Badge 2019-2020

When I was a teen, I dreamt of going to the United States in my third year of college. After all, I was going to be an English major, choosing American studies as my specialty. Then in my third year, I would be incredibly motivated and talented and would be allowed to go on an exchange student visa to the United States.

I had already picked my preferred cities to go to. Most were suburbs of Boston. First, it was Lynn. Then Somerville.

Then, at one point, I got obsessed with Columbia, Maryland, a suburb of Baltimore. Then, finally, Silver Spring, MD, a suburb of DC.

None of these were college towns as far as I know, but I always dreamt of going to college in the city and living in the suburbs eventually. Because, after all, with my incredible talent (ahum) and affirmative action, I calculated that I’d be allowed to stay for some professional career and never go back to the Netherlands again.

Now that I think of it, it’s interesting that I never dreamt about going to California for my studies. I would say that most people choose either the east or west coast. At least people from Europe most likely do, with the Midwest, South and Great Plains being far more conservative. I just envisioned living in New England or the DC area.

And just for the record, it all never came true. I never even majored in English at university. I still haven’t been to the United States, though I hope to visit there someday. Mostly to meet some people I know.

This post was written for Stream of Consciousness Saturday (#SoCS), for which the prompt this week is “Cal-“. I could’ve written about calendar calculation, calories or Calibre (an eBook management tool). Instead, some of the other participants’ posts inspired me to write about my American dream.

What a Day, What a Year! #SoCS

Today I got my COVID test results. Thankfully, I’m negative. Like I mentioned yesterday, I went into room-based isolation with cold symptoms and a sore throat yesterday morning. That day in isolation was hard. I constantly imagined testing positive for COVID. That’d mean at least five more days in quarantine. It’d also mean I would have to alert my nurse practitioner and the facility’s behavior specialist, both of whom I’d seen on Thursday.

I felt intense guilt about possibly having infected my staff too. After all, when I was still only experiencing a sore throat, the staff tried to reassure me that I couldn’t possibly have COVID. It may be true – I had my second shot of the vaccine last week -, but I couldn’t be sure.

Can you imagine that, a year ago, we were just at the beginning of this pandemic? On March 12, 2020, the first local case of COVID-19 had been discovered. On March 13, the community service event that was due to take place at my day center as part of a countrywide volunteering initiative, had been canceled. The day center closed five days later, on March 18.

I hadn’t seen my husband since the first weekend of March I think and wasn’t going to see him again till sometime in late May. After all, at first visiting the care facility was discouraged, then it was completely prohibited except in rare cases when a family member was essential for a client’s care. My husband wasn’t.

I am so glad that now, during the second lockdown, care facilities remain open to visitors except when there’s an outbreak of COVID or suspected COVID, as in my case yesterday. I am so glad one of my fellow clients, who had her birthday on Tuesday, may receive a visit from her family tomorrow.

I had my own birthday on June 27, one day after the final restrictions to visiting were lifted, provided there’s no countrywide lockdown or COVID outbreak. Though we’re in a countrywide lockdown again, the lockdown policy remains that care facilities can be open. I credit the prime minister’s late mother, who died in a nursing home during the first lockdown or so I believe.

This post was written for today’s Stream of Consciousness Saturday (#SoCS) prompt of day/week/month/year.

Sky Is the Limit #SoCS

Today’s prompt for Stream of Consciousness Saturday (#SoCS) is “Sky’s the limit”. I was immediately reminded of a story in Stephanie Kaars’ book Speciale mama’s (Special Mommies), in which this phrase inspired a mother to challenge her son, Sky, who had severe cerebral palsy, beyond his apparent limits.

It then made me think of how challenging someone beyond their apparent limits, doesn’t mean expecting them to be “normal”. I mean, the phrase which inspired the mother says that her son is the limit. In other words, each child or adult is their own limit of what they can achieve and this should not be defined by the person’s characteristics, such as disabilities.

I don’t have as severe a disability as Sky. I mean, yes, of course blindness is seen as a “major” disability for statistical purposes, but it alone doesn’t qualify anyone for long-term care. Severe cerebral palsy does. That being said, I do have a significant combination of disabilities: blindness, autism and mild CP.

I don’t think these disabilities, or rather the stereotyped perception others have about them, limits me. I mean, of course my disabilities impair me, but that’s totally okay. I am not limited by others’ ideas of what a blind person (as that’s my most visible disability) can or cannot do. Because, you know, even though I am in long-term care with the highest care profile in the visually impaired category, people still sometimes say I’m quite capable for a blind person. No, I’m not.

I am also reminded of the current slogan for the National Federation of the Blind: “I can live the life I want; blindness doesn’t hold me back.” The old slogan was: “With proper training and opportunity, an average blind person can do a job as well as an average sighted person.” This may or may not be true for the hypothetical average blind person, but it certainly isn’t true for me.

Is the new slogan? Yes, I think so. I could really go to university if I pushed harder, maybe. Maybe not, I’m not sure. However, I have no desire to go to university anymore. Similarly, I wasn’t dying living semi-independently. Well, I almost was, if you count the two medication overdoses I took, but those weren’t due to blindness. Then again, I am happy to live in my current care facility. I may still have things I want to improve on, but I for the most part do live the life I want.

More Time

Today’s Five Minute Friday (#FMF) prompt is “Time”. There are so many things I wish I would make more time for. Today, in five minutes (and I’m trying to do this in five minutes seriously), I am going to share about the things I want to make more time for in 2021.

First up, of course, is faith. I want to spend time each day praying and reading my Bible. I already read my Bible everyday so far in 2021, but sometimes it’s just five minutes before bed.

I have also created a faith-based journal in Day One, my diary app. In it, I want to write down my prayers as well as interesting Bible passages. I think consciously writing them down helps me devote more time to God.

Second is walking. I did a great job of this this past week, getting in over six hours of active zone minutes so far.

I also want to write more. I really aim to blog almost everyday. I would like to say everyday, but I can no longer make that work for 2021. But I can start now.

Then comes reading. I definitely want to read more. I am doing okay in this respect so far.

Lastly, self-care. I didn’t make a resolution about me time or essential oils this year, like in 2020, because I did well enough on it already. However, self-care also means taking good care of my body, and I could certainly improve on that.

By this I mean healthy eating, exercise other than walking, yoga, etc. I could definitely work on a healthier body.

That’s it. I did pretty well freewriting for five minutes flat and I was in fact already sort of done when the timer went off.

What do you hope to spend more time on in 2021?

Grief

Today’s Five Minute Friday prompt is Grief. When I first saw it, I knew I just had to write on it, but I didn’t know what to write. In a way, I still don’t know. But let me write anyway.

I have been close to clinically depressed over the past few weeks. I don’t know whether this is grief for something I have lost. Perhaps my old, functional self.

Then again, that functional self was a façade. A mask. Layers upon layers of masks formed within those early years of my life, when I still functioned. On the surface, that is.

And here I am, in a care facility, waiting for the manager and behavior specialist and the funding authority to figure out if I can get one-on-one support. And now I grieve the loss of that façade. I am intensely sad. I worry that if I am truly myself, if I peel off all the layers and layers of masks, an intensely wicked, horrible monster will remain. I can almost literally picture the monster in my mind’s eye.

Everytime I think I’ve found the real, authentic me, and it’s a good thing, it turns out to be yet another alter. I wonder what remains if they all go. Will the intensely wicked, horrible inside of me seep through to the outside world?

I am not very religious, but I do believe in God. Especially in these hard times, I pray. I pray that God will help me remove the layers and layers of masks I’ve put up over the years. I however also pray that, beneath them all, the monster will turn out to be some kind of prince(ss) from Beauty and the Beast or whatever. At least not as wicked as I see it as.

Okay, this turned out very different than I had imagined. This piece does reflect my innermost thoughts. For those who haven’t read my previous posts, I do not see my inner monster as some kind of universal thing, like original sin. In fact, I am convinced that most people are both good and bad. The wickedness applies only to myself. And yes, I know I’m not some type of criminal, but I still see myself as intensely bad.

Journal #SoCS

SoCS Badge 2019-2020

Journaling is one of my favorite activities. That being said, I’ve taken forever to find the right means of doing it. I tried a regular Word document, at least twenty apps on my iPhone and a couple on my PC too. In fact, at one point I spent $100 on an app that didn’t even work.

I currently use an app called Day One on my iPhone. It’s not perfect, but it’s the best I can get so far. That is, at one point there was an app called Dyrii that was better, but they went into maintenance mode and at the last update, messed things up pretty bad.

In addition to journaling, I love to collect journaling prompts. I probably have about twenty collections of journaling prompts in my various book apps and on my PC. I don’t use prompts as much as I’d like, but just the thought of having them at hand is helpful. It may be a kind of autistic perseveration, but oh well.

In Day One, I have four different journals righ tnow. One is a general journal that I rarely update. The second is specifically for my alters to journal their thoughts. The third is a prompt-based journal and the fourth is a gratitude journal.

Just yesterday, I thought of starting another one, specifically for chronicling my recovery from compulsive overeating. I also may want to start a quote-based journal. I so far decided against either of these, but Day One allows unlimited journals if you have the Premium version. Which I’ve had a couple of times but each time deactivated again. I’m pretty sure I’ll keep the Premium subscription now though.

This post was written for #SoCS, for which the prompt today is “Jour”.

My Essential Oil Container #SoCS

SoCS Badge 2019-2020

I’ve been perseverating a lot about essential oils, so when the prompt for Stream of Consciousness Saturday (#SoCS) was “Container”, I immediately thought of my box of essential oils. The box was specifically made for storing 10ml bottles of essential oils. It was built by people with intellectual disability.

I’ve had this one box for many years and stored a large amount of essential oils in it. It can store at most 30 bottles and I had it full until I weeded out some expired oils at the beginning of the week. That is, I didn’t just store essential oils in it, but also fragrance oils. I have those stored in a separate basket now.

Currently, there are eighteen oils in my container. I bought them pretty much randomly, so cannot use all of them in blends, because that would require I had other oils to go with them. However, I enjoy each and every oil.

I have been counting and calculating which oils to buy next too. I don’t have many citrus oils, because I had to throw several out that were years beyond their shelf life. I may buy some basic ones, like lemon and orange, but not sure. I will maybe also buy some spicy ones, as I love the scent of litsea (may chang), but it is usually combined with spices such as cinnamon or clove.

I also created a folder on my laptop with essential oil blends and an index of the box. After all, I cannot read the bottle labels and I cannot label each bottle in Braille (that would take up too much space). So I have them sorted alphabetically, from field mint (which translates to “akkermunt” in Dutch and which I can barely use) and anise to tea tree and ylang ylang.

What are y’all’s favorite essential oils? I’d love to know so that I can decide on which, if any, to buy next.

Choosing Love #SoCS

Choosing love is important. Choosing that one person you would want to be with. Or choosing more than one if that’s your thing. Many lovers value their partner above themself. I’m not sure I do and that often makes me feel bad about myself.

I mean, I always say that Jeroen is the most cherished, best, loveliest person in the world. Then he replies that it’s me. Sometimes we go on to joke that it’s our cat Barry.

Yet, whenever I say I love Jeroen more than myself, I think: “So why did I choose to go into the care facility?”

I was fully expecting my husband to say the same when he visited me for the first time in over two months, since visiting had been prohibited until now due to coronavirus lockdown. I fully expected him to come and tell me he didn’t want to be my husband anymore. And yet he didn’t! I’m so happy that, even though I chose my own happiness over his, he chose love!

Written for this week’s Stream of Consciousness or #SoCS, for which the prompt today is “ch”. Also writing this using the new block editor.