A Twelfth Grade Memory

Last Monday, I already shared some memories from the year 2003. Today, one of the prompts over at Mama’s Losin’ It’s Writer’s Workshop is to share a twelfth grade memory.

My senior year of high school was the year I was supposedly planning on going to university after graduation. I knew this was going to be hard, but my aversion to going to college straight out of high school, didn’t really form. Besides, I had no idea what else I was going to do. I remember one day, August 31, 2004, one of the first few days of the school year. I had already come out as dissociative (multiple personality) on my blog in March, but had only been aware of three alters at the time. That day, Carol, who was up to that moment my assertive helper part, gave up and a new one, who called herself Clarissa, emerged.

I wasn’t aware at the time that what I was experiencing was an actual mental health diagnosis, mind you. A friend of mine had told me about dissociative identity disorder after I first came out in March of 2004, but I was still in denial. Part of the reason is that one criterion of DID is amnesia, which we rarely experience.

In March of 2005, my high school tutor had arranged for me to see a blindness rehabilitation center psychologist. The high school tutor, I must say, read my blog, so he knew about the parts, including Clarissa. He had told the psychologist, who obviously immediately thought of DID. She started to ask me all sorts of questions, all of which I either circumvened or answered negatively to. I knew, after all, that, if I’d gotten the psychologist to think I had DID, I wouldn’t be accepted into the rehabilitation program.

In hindsight, of course, I wish I would’ve been more honest. I knew I didn’t have amnesia or time loss, but I did have most other symptoms of DID, some of which I hadn’t become aware of being abnormal. It took over five more years before I was diagnosed with DID.

In the end, I was accepted into the rehabilitation program. I started on August 22, 2005.

Full disclosure: after being diagnosed with DID in 2010, I lost my diagnosis again in 2013. I am pretty sure I don’t have full-blown DID, but probably do have some dissociative disorder.

Mama’s Losin’ It

Reflecting on My Life: 2003

Last night, I couldn’t sleep. I was looking for some link-up parties to join in and came across the Life This Week linky. In this week’s edition, host Denyse shares her memories of the year 2003. As this is my first time participating in the linky, I should really start my story from the beginning on, but for some reason, I can’t.

I may have shared this before, but in secondary school, I always had this superstition that life ran in circles. There’d be a year of struggle and crisis, a year of renewed hope and finally a year of disillusionment, after which I’d spiral back to struggle and crisis. The year 2003 was a year of disillusionment.

In 2003, I was sixteen. I turned seventeen at the end of June. I was in the tenth grade for the first half of the year and in the eleventh for the last half.

In the summer of 2002, I had barely moved up a year. My grades weren’t that good and I only moved up because I worked very hard the last few weeks of the year. I had been struggling with feeling like an outcast due to my blindness the entire 2001/2002 school year. That was to change by late 2002, or so I believed. My high school tutor promised me he’d help me feel better.

What he did was come up with a social skills assessment for blind students and have the teachers fill it out. That was no good for my self-esteem, as I showed considerable weaknesses. No-one knew at the time that I was also autistic, even though I suspected it.

The year 2003 was the year I started to learn about myself from a possibly autistic point of view. Even though I had started suspecting I was on the spectrum in mid-2002, I didn’t feel comfortable joining online support groups for it till 2003.

This was also the year I expanded my horizons where it came to using the Internet in general. I had gotten an Internet connection in May of 2002. By April of 2003, I started keeping an online diary on DiaryLand, which several years later morphed into my first WordPress blog.

In the summer of 2003, I attended the International Computer Camp for blind students in Switzerland. I had attended it the year before, when it was held in England, too. This year, I felt a bit disappointed in the end, because it didn’t provide me with the cathartic experience I’d felt the year before.

In 2003, I also explored fictional storytelling as a way of expressing myself. I was experiencing some significant selective mutism at the time, which I could circumvent by pretending I wasn’t talking about myself. This is how my “mirror image”, Kirsten, came to be. She is one of my main alters to this day.

Finally, this was the year I was first starting to explore future planning. Here in the Netherlands, students with disabilities attending mainstream education didn’t get any type of special transition planning at the time. I was expected to just get by and go to university straight out of high school in 2005. In 2003, I started to doubt this would be a success, but I didn’t voice my doubts yet. As it is, I didn’t actually make it clear that I wasn’t going to university right out of high school until April of 2005.

Where were you on the path of life in 2003?

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

Organization as a Self-Care Skill #AtoZChallenge

Welcome to day 15 and my letter O post in the #AtoZChallenge. Today’s topic may seem a bit boring. I’m going to talk about how organizing your life can help you take better care of yourself.

Let me start by saying I’m a terrible organizer. In high school, I had a calendar that I’d typed out myself in Word. I started out keeping it faithfully at the beginning of the first school year. By the time we got to the end of that year though, I forgot to write down my homework about half the time and looked it up even less. I had a great memory, which meant I didn’t usually miss homework deadlines.

I never kept a calendar in college or beyond, but now that I have an iPhone, I do try to use the calendar app to track appointments. Which reminds me, I still need to write next week’s phone appt with my community psychiatric nurse into it. Going to do that now. Be right back.

Okay, done. Where was I? See, I’m pretty disorganized. Still, I try to keep some order in my life. It helps me, for example, to have reminders about taking my medication in my phone. Otherwise I may forget and that’s not good.

I also, like I mentioned before, have an app that reminds me to drink enough water. Habit-tracking apps like this exist for a bunch of habits that will help you have a more meaningful, organized and productive life.

Decluttering is another way of getting more organized. There are lots of specific methods for it, such as FlyLady, the Konmari method, etc. I would love to stick to such a method, but honestly more so that I could talk about it than to actually get cleaning. I guess that’s weird.

Because I am blind, I don’t usually get bothered by clutter unless it’s in my way. However, of course, clutter does make it harder for me to remember where I left my things. That’s why currently I try to keep at least some order in my drawers and my wardrobe. It’s hard, but it pays off.

Are you an organized person? Or have you developed strategies for organizing your life?

Feelings After Watching a Documentary on the Blindness Rehabilitation Center

Today, I got a subscription to see past episodes of Dutch television programs mostly so that I could see a documentary series called Five Days Inside. It’s where three presenters rotate to visit mostly health care settings or other institutions that are not commonly shown to the general public. The episode of four weeks ago was about the blindness rehabilitation center I attended in 2005. I actually still recognized some of the staff talking to the presenter from when I went there.

Watching it had me very emotional. I don’t know why. I guess because most of the clients who were featured, some roughly my age when I attended the program, are so optimistic about their future despite sometimes having recently lost their vision. When I attended the program, I often felt way ahead of these people and way behind of them at the same time. After all, I had pretty good Braille reading skills. My reading speed at the start was more than twice that which is the ultimate goal of the rehabilitation program for adults. As I learned today while watching the episode, some people don’t even have the tactile ability to ever learn Braille. Most will only be able to use Braille for simple labeling, not for reading books, like I do.

On the other hand, I never learnd to cook. Not in those four months in the center or the eighteen months in an independence training home that followed. It wasn’t for lack of teaching, but I couldn’t manage these tasks. Or even simpler tasks such as putting peanut butter on bread.

Today, I talked to my CPN from the mental health agency. We were talking about my skills or lack thereof. She seems to blame my parents for not having taught me properly. I understand. Then again, with my having had a meltdown each time my parents tried to make me learn new practical skills, it’s only understandable that they gave up. My CPN acknowledged this is a common autistic trait. My parents would say I’m not autistic, just stubborn. Apparently I decided from as early as age seven on that I would never learn practical skills because I couldn’t do them visually. Or maybe because I thought I was too smart for them. I don’t know what my father’s theory boiled down to exactly.

And now I see these blind or partially sighted people who are planning on working or going to college. I don’t know how I feel towards them. On the one hand, I feel envy. I wish I could cook tuna macaroni or zucchini soup. I wish I could ride the bus on my own, then go into town to buy raisin rolls. I wish six months of training could teach me the skills to live independently and go to college or work.

Then on the other hand, I feel an enormous sense of relief. I feel relieved that somehow my support coordinator was able to convince a long-term care funding lawyer that it’s at least partly due to blindness that I can’t.

PoCoLo

Quote of the Day (February 19, 2020): Everyone Sees What You Appear to Be

“Everyone sees what you appear to be, few experience what you really are.” – Niccolò Machiavelli, The Prince

When first starting this blog, I intended to do a daily quote of the day post. I never did. In fact, my “Quotes” category has only four posts. I do like quotes though, so when I figured I had nothing else to share, I decided to do a quote post again.

Today I checked out a sort of guided self-discovery journal called Happy to Meet Me. This quote was printed above the first prompt. The prompt was about common misconceptions about you. It asks you what you wish people would automatically see about you.

This is harder than I thought. After all, the prompt isn’t what you wish people didn’t immediately know about you. I mean, that would be easy. I wish people would see beyond my blindness. But then what would they see?

I think most people would see me as still somehow disabled if they didn’t see I’m blind. Like my sister said when I was a teen, I don’t appear like someone my age judging from even my way of walking. Of course, I have mild cerebral palsy, but the average Joe won’t have a clue. They’ll most likely think I’m intellectually disabled. Until I start to talk. Then most people will be baffled and start to assume my every way of being different is due to blindness again. After all, most people here are still pretty clueless about autism.

I don’t really know what I wish people would automatically know about me. I mean, back when I was still more serious about blogging, I knew that people had their blog name printed on T-shirts and I even for a fleeting moment considered getting one myself. I’m glad I never did, as honestly in the age of smartphones I don’t think I’d want people in the streets to be able to Google me without ever having met me. I mean, my blog is way too personal for that.

I can think of things I wish professionals would automatically know about me. I wish they understood the disconnect between my intellectual and emotional functioning. I can also think of things I wish friends would automatically know. I wish they’d know about my interests. But what would I want other people in general to know? I guess I’d start with the very basic: I am a human being just like you.

What do you wish people would automatically see about you?

Writer’s Workshop: Collections

This week, one of the Writer’s Workshop prompts over at Mama’s Losin’ It is about things you collect. It definitely appealed to me, as at least as a child an teen, I used to collect a lot. Now I seem to collect things you can use and that I actually intended to use when buying them, but then I end up rarely using them. Does that count as collecting?

As a child, I, like most other children, had a large collection of stuffed animals. I also had a lot of Barbie dolls and such. In particular though, I had lots of PlayMobil® figures and stuff for them. When I was about eleven, I was even gifted a large box of PlayMobil® by someone on a garage sale. I had previously visited the garage sale and bought some of his stuff and by this time he probably wanted to get rid of it all so bad. That plus seeing how much I enjoyed it and came back each time to buy more stuff, probably convinced him to give it all to me. I however did play with it a lot until I was about fourteen. I particularly remember the games I played with some Native American-looking PlayMobil® figures whom I called Ingassa and Maranna. I had no idea at the time what were real Native American names (still don’t to be honest). I would always say these figures came from Costa Rica.

Later, I collected gemstones and crystals. I had some interest in their presumed healing properties, but mostly just liked looking at the colors and feeling their shapes. I had a lot of quartz crystals, including amethyst, rose quartz and citrine. I also loved calcites and had both the green and honey-colored ones. I at age twelve did a large research project on mineralogy. I however had no idea one of my stones was a form of asbestos. When I found out what it was while living on my own in 2007, I almost landed in crisis thinking I or one of my parents would develop cancer from it.

By the time I came to college age, I didn’t really collect anything anymore. I don’t even know where my crystals are, even though I know I had them at my student apartment. I can’t see the colors now anyway, although I at least used to have a file in which I wrote which one was which so may be able to experience some joy from them anyway.

When I was about 25 though, I developed an interest in crafting and started buying craft supplies. For some stupid reason, I started with card making, which is a pretty inaccessible craft for someone who is totally blind. I probably spent over €1000 on supplies before finally giving it up. Then came jewelry-making, polymer clay, rainbow loom and some others, all hard for someone with my disabilities. I finally settled on melt and pour soap making, although I haven’t done this since coming to the care facility. The good part is though, even if my soaps don’t turn out aesthetically well, I can still use them, so I don’t just collect soap stuff for the sake of it.

More recently, I started collecting all kinds of scented stuff. I have a large collection of essential oils at my husband’s and my home. I also have wax melts and of course the fragrance oils I use for soap making. I love those. Still, my diffuser is probably still packed from the move. I need to ask my husband where it is, so I can bring it to the facility.

When I collect something, I’m usually more interested in researching the stuff I collect than actually using it. I loved learning about lotion making when I first started soap making, but I rarely actually made any lotions. I also have a ton of books on aromatherapy (most thankfully free or through my Bookshare subscription), but rarely make any blends. Of course, the reason is partly that I cannot tell how many drops of a particular oil I put into the blend. I would love to ask my staff for some help with this, so that I can make diffuser blends or even massage oils. But first, I need to find my oils and my diffuser, as I don’t want this to end like my card making obsession, where I spend another €1000 (that this time I don’t have) before realizing this isn’t for me.

Mama’s Losin’ It

A Night-Time Crisis

So I really need to get something off my chest. Yesterday was a mostly good day, as you can see from my previous post. However, in the evening, we landed in a pretty bad crisis.

It started out with the evening staff wishing me goodnight at 9:45PM. I still had to brush my teeth, so she asked whether I would manage. Normally I do, so I said “Yes”. When I was done brushing my teeth, my gums hurt from the inflammation and I was considering asking for paracetamol. I mean, I could’ve waited till the pain got severe, as I did the previous night, but then I’d have to bother the night staff.

I also realized the evening staff had left the light on. I had asked her to switch it off (it is a truly stupid switch which I can’t work), but she had asked me how I’d manage without light if I wasn’t ready to go to bed yet. Well, like, how I manage virtually all the time without light. I have light perception, which can be useful but in this case was more bothersome, in that it meant having to go to bed with the lights on. I can write blog posts and do basically everything with the lights off, but I cannot sleep with the light on. So inbetween the argument of whether I would be comfortable in the dark, the staff actually forgot to turn off the light.

As it was only 9:50 and the staff are supposed to be here till 10:15PM, I went looking for the evening staff rather than push the call button. She was gone. Then I pushed the call button. No response. In the next 30 or so minutes, I got increasingly panicked. I heard the buzzer go off so assumed the evening staff either must be somewhere but not care, or she’d left the phone with the buzzer in the house rather than having given it to the night shift. So how would I reach anyone now?

I was very panicked, engaging in self-injurious behavior, screaming and shouting. I was so scared and angry at the same time. If the staff are supposed to be here till 10:15, why did she leave by 9:50?

At one point, I somehow opened the door to leave the unit. Our unit is at the top floor of the building. It is sort of locked, in that my fellow residents can’t work the key to open it. I thought neither could I but somehow I can.

I ran out the door, intending on I don’t know what, going outside or something. My first response in panic is either fight or flight, and in this case I utilized flight quite literally.

A staff from the downstairs unit found me crying at the top of the stairs. Another staff from our neighboring unit came to the rescue too.

It turns out the night shift doesn’t start till 10:30. This is one night staff who caters to the entire facility, so she isn’t physically present on my unit most of the time. Well, how am I going to reach a staff in an emergency if the evening shift leave at 9:50 (or 10:15 in an ideal situation) and the night shift doesn’t come on till 10:30. My staff eventually found the solution of giving their phone to the neighboring unit, where staff is available till 10:30.

Finally, the night staff, who had joined the other two staff in helping me, gave me my paracetamol, plus a lorazepam to calm my anxiety, and turned off my light. Nonetheless, I didn’t sleep till around the second time the clock hit 2:30AM (daylight saving time ending). The night staff, though she hardly knows me as she only works nights, was nice enough to sit by my bedside and comfort me for a little while.

Why I Am in Long-Term Care

The day 1 prompt for this year’s 31-day writing challenge is “Why”. I immediately thought of the question that keeps popping up in my mind whenever I meet someone new at the care facility: Why am I in long-term care? Today, for example, I met a student doctor who was touring our home. I informed her midway through our conversation that I don’t have an intellectual disability, to which she replied that she could tell. Well, duh! Even when I’m overloaded, like I was at the time, and experiencing pretty bad language problems, I still sound like someone with at least an average IQ.

So why am I in long-term care? To a casual stranger, I could just point to my lack of sight and they’d be satisfied. Not a doctor or even a medical student, I guess. The medical advisor for the funding agency understandably concluded that blindness alone doesn’t warrant 24-hour care. Neither does mild cerebral palsy. And, as regular readers of this blog know, autism, being seen as a psychiatric condition, doesn’t count.

They finally found a way around this situation by saying that my disabilities are intertwined. They are, of course. In multiple disabilities, the whole is more than the sum of its parts. For this reason, the short answer to why I’m in long-term care is because I’m blind and autistic and have mild CP, not because I have any of these alone.

This is the legal answer. The way the funding agency found around the stupidly close-minded look at disabilities the law requires medical advisors to have. The long answer is, of course, that my individual care needs mean I need 24-hour proximity of care.

I have significant executive functioning issues. These cannot be objectified by tests because I’m blind and the tests of executive functioning that are available, are all visual. For this reason, the medical advisor wrongly concluded that I don’t have cognitive impairments. I don’t have an intellectual disability, but that’s not the same.

These executive functioning difficulties make it hard for me to take care of myself. I can do basic self-care activities with reminders and prompting, but then still I often mess up.

People, including my support staff, have used my blindness as an excuse for my difficulty with basic self-care. Of course I can’t see when my clothes are dirty, but if I were just blind, I would be able to prevent the most common causes of my clothes getting dirty. Like, I would be able to prevent myself from drooling over them, or I would be able to find other ways around it.

People also use my blindness as an excuse for my needing proximity of care. If I were just blind though, I would still struggle to know when staff had left the room, but I wouldn’t feel overwhelmed by it.

But I’m not just blind. Had I been just blind, I wouldn’t have needed to apply for long-term care. And yet, paradoxically, my care ground is blindness.

Blue to the Blind #SoCS

Today’s prompt for Stream of Consciousness Saturday (#SoCS) is “blue”. The idea is to write about the firsst blue object you see when sitting down to write your post. Well, I am blind, so I don’t see anything blue as I sit here to write. I could be writing about things I know to be blue. The sky is blue. The ocean is blue. Or at least, they’re both seen as blue due to the sun’s reflection on them, or something.

I could be writing about my sensory cat, the soft toy I got for my 31st birthday from my sister. I think the cat is blue. It is filled with lavender, which I know is kind of blue too.

How would I describe blue to a person who’s never seen it? I can, at least, having had color perception as a child, still imagine blue in my mind’s eye. Someone born totally blind can’t. I once wrote a post describing the color green to blind people on my old blog. This was a journaling prompt, just so you know that no actual blind person asked me to describe the color green. Which, I should say, I really can’t.

I mean, synesthesia may be able to help. Blue is a “cool” color. It is the color of the number three in my synesthetic perception. Then again, even with synesthesia, everyone’s perception is different, so that wouldn’t make sense.

Interestingly, there are no blue letters in the word “blue” and the overarching color in the word is orange for the letter B.

I wonder now, does my synesthesia always make words look like the color associated with their first letter. I’m not sure, but the word “green”, even though the two E’s are green, isn’t really green overall. It’s more red with a touch of green. The G is red.

Mondays are green too, even though the word “Monday” has no green letters in it. Fridays are blue and yet again, there’s no blue letters in the word. Isn’t that fascinating?