Losing Myself and Finding Myself (Reena’s Exploration Challenge #96)

I remember when and where I lost myself. My old self, that is. It was November 2, 2007 at 8:01PM when I stepped onto the bus at Balustrade bus stop in Apeldoorn. I had decided this was it.

I phoned my old support coordinator at the training home. I’d just been told to leave the home’s premises, because according to the on duty staff, I was making them take unwarranted responsibility for me. I had come there in distress and a housemate had offered for me to spend the night with her, so that we had time to find me a new place to stay in the morning.

I wasn’t homeless. That is, I had a roof over my head. In the Netherlands, the word that translates to “homeless” also refers to people who are wasting away in their residence. And I was.

At 8:01PM November 2, I phoned my old support coordinator to tell her I was going to kill myself. I was on the bus and the bus driver and fellow passengers heard me. They called the police and, after a long wait at the police station, I was admitted to the psychiatric hospital in the middle of the night.

At that point, my old self went away. I lost the self that went to college, had plans for working and lived independently.

I’m still not 100% sure who will replace her. When and where I’ll find myself. My new self, that is. I know my old self is gone. Even though I live semi-independently now, I do not have anything close to a “normal” life, whatever that may be. But that’s okay. I know I will ultimately find a new eqwuilibrium, when I’m in a living facility that suits me.

In September of 2006, I wrote a post in my online diary about the two different images I had of myself. One was “white”. This image represented a “normal” life. Living independently, going to university, finding a job, marrying, getting children and whatnot. The other image, the “black” one, represented my need for support. It wasn’t that I needed 24-hour care, but that I needed more than just the once-a-week visit from a support worker to read me my mail that’s normal for people who are just blind.

By April of 2007, I knew the “black” image was coming true, but I was seeing the colors in it. I eventually did live independently and go to college, but I would get sixteen hours of home support a week.

And then that image too died, on November 2. It was hard. I grieved. But I didn’t give up. Gradually, I started to see how colorful a life I can have if I accept care.

The care facilities I’m looking at moving into, couldn’t be closer to the “black” image of myself. They are 24-hour intensive support facilities. Yet I don’t see that life as bad. I see it was exactly as colorful and rich as, or even more so than the “normal” life I envisioned for myself.

I am joining in with Reena’s Exploration Challenge #96.

Progress in Finding Long-Term Care

It’s been exactly six weeks since I got approved for long-term care, so that we could finally start finding me a supported housing facility. Things are moving slowly but steadily. Today, let me share how we’re doing.

Immediately after we heard I was approved for long-term care funding, my support coordinator contacted the care consultant for my current care agency. She made sure to get the paperwork in order so that, while we’re waiting for supported housing, I can retain my current support. After all, community support through the local authority was immediately stopped. My support coordinator also contacted the care consultant for the living facility in Raalte, which is with my current care agency too.

When it turned out the process with that living facility would be slow-moving, I proposed to contact the two blindness agencies to explore the possibility of my living there. One of them responded immediately with an appointment for an intake interview. This is, unfortunately, the one with the facilities in the far north and south and west of the country. Of course, we are talking the Netherlands, not America. However, my husband isn’t happy to travel up to two hours each week to visit me. We agreed on a maximum distance of one hour. This agency has nothing within an hour’s driving distance. We did however request that they help us by recommending accommodations a future living facility could make for my blindness. They will come by to observe me at day activities next week.

The other blindness agency has my file, but they haven’t yet scheduled an appoitnment to meet me.

I went to have a look at the facility in Raalte last week. It was great. The staff/client ratio is 1:6 to even at times 1:4 during the day and there is an awake night staff. They also have tons of sensory supplies, including a sensory room, rocking lounger and a bathroom with a tub. I will hear more about whether the psychologist and physician for this facility find me a good fit soon.

Then today I heard about another facility. It is with a countrywide Christian care agency. It is in the city of Ede, which is about a 45-minute drive from my current home. The facility primarily serves elderly people with intellectual disabilities. I don’t know whether that would be a problem. It might be, as the other clients are probably a lot less mobile than I am. Clients only have a bedroom to themselves, but I don’t mind. The care consultant would send my file to the psychologist for this facility too and then I may come for a tour.

It all makes me feel a bit confused but overall excited too. I mean, I still feel off applying to live in intensive support living facilities, being that I now live semi-independently. Of course, my husband does all of the housework, but still. It’s hard to believe that people suddenly aren’t rejecting me, saying I misuse care and leaving me to my own resources.

The Summer After High School

It is still incredibly hot here. That is, it should be a lot cooler than it was yesterday. I’m not feeling it though. Probably my room, which is at the front of the house, keeps the heat.

I want to write, but I don’t know what about. For this reason, I looked up writing prompts for the month of June on Google. A prompt I liked is to share about the summer after you graduated high school.

This was in 2005. Man, can you believe it’s already been fourteen years? I remember finding these odd lists of things that mean you live in 2005, such as “You have lost touch with old friends simply because they don’t have an E-mail address”. E-mail is way outdated now. However, I think WordPress already existed, though I didn’t have an account. But I digress.

I graduated from high school on June 24, 2005. Two weeks prior, I had finished the assessment week at the country’s residential rehabilitation center for the blind and had been advised to attend their basic training program. It was expected that I couldn’t start until October.

However, in early August, I received a phone call telling me I could start on August 22. So that’s where I spent the last few weeks of the summer holiday and the rest of the year.

The summer of 2005 was also the summer I had a ton of health worries. Most of them were just health anxiety, but one of these scares did get me sent to a neurologist for suspected shunt malfunction. That was when I first learned about the possible impact of my hydrocephalus on my life. I never had a shunt malfunction *knock on wood*.

The summer of 2005, essentially, was the time I left my parental home and entered the care system. Even though I was supposed to get independence training, my father predicted I would never leave the care system. He was right, but so what?

Today, I had a meeting with the blindness agency which the rehabilitation center is part of to see if I can live with them. I won’t, because their living facilities are all over an hour’s drive from my husband. This meeting did remind me of how I entered the care system fourteen years ago with the aim of doing training for a year (at the center and an independence training home) and then leaving for Nijmegen to live completely independently. It didn’t work out. The disparity between this overly-normal, independent self, the one who is married now and doesn’t need help, and the multiply-disabled self, is still hard to deal with.

#WeekendCoffeeShare (June 23, 2019)

A lot has been floating through my mind today, but until I decided to participate in #WeekendCoffeeShare again, I had no idea how I was going to convey my thoughts into a blog post.

Like last week, I’m having a cup of green tea as we catch up. I love green tea, more so than coffee. I must say though that I’ma bit addicted to coffee. I drink it more to get energized or out of habit than because I truly like it.

If we were having coffee (or green tea), I’d share how I’ve been doing with respect to finding a living facility. On Tuesday, I had an appt with the care consultant for a facility with my current care agency. Because he isn’t in a position to decide whether I’m a good fit, I’ll have to wait for him to discuss my case with the behavioral specialist and manager. He said he’d call my support coordinator next Tuesday, but wasn’t sure whether he’d have any news by then yet.

Because I wanted to remain active, my support coordinator has been contacting some other agencies. We started with the two national blindness agencies. Bartiméus has living facilities about an hour’s drive from my current home. Visio’s living facilities are all at least 90 minutes away. Visio was the first to return my support coordinator’s call and I have a meeting with them next week.

My husband was a little sad, as he thought I want to live in Visio’s facility that’s nearly a two-hour drive away. Of course, I want to be as close to my husband as possible, but I didn’t know how to go about finding a suitable living facility. My support coordinator is going to contact other agencies closer to my current home next week. These are not for the blind, but oh well.

If we were having coffee, I’d also share about our house-hunting experience. The visit to the house on Tuesday was okay, but after reading some reports on it, we decided not to go for it after all.

If we were having coffee, I’d share that my husband and I had lunch at a pancake restaurant today. I had a pancake with blueberries, while my husband had one with raisins and bacon as always.

If we were having coffee, I’d also share that the screen reader company finally called to let me know I could get a new version of JAWS, my screen reader for Windows, covered by health insurance. It is also about time for a new Braille display, he said, and they could let health insurance pay for both in one go. This means that after an eighteen-months-long wait, I may finally be able to get a PC with Windows 10 and the screen reader I love. Of course, I already have a Mac and hence I told the company rep I had to think of it.

My husband was critical at first. He asked which I’d get rid of if I had to choose one: my Mac or a PC with Windows 10 and JAWS. I said I’d get rid of my Mac. I mean, I’ve had it for nearly half a year and still struggle to use it. Other blind people say that’s normal, but I really don’t want to spend that long getting used to a computer. I mean, that’s how long it took me to get used to my very first PC! So my husband offered to get me a laptop with Windows 10 and all if he can have my Mac.

I have been thinking it over and the only thing I can do with my Mac that was a pain on PC was using a good feed reader. Then again, I can’t get used to the way Safari works on Mac, so if I want to actually interact with feeds, I’ll still prefer my iPhone. I no longer use my PC, because it has two broken keys and its Windows 8.1 won’t properly update.

Anyway, I’m going to call the company rep to let him know I’ll go for getting the Braille package as it’s called tomorrow.

If we were having coffee, I’d also share that it’s incredibly hot outside. In the coming week, it’s forecasted to get to 35 degrees Celsius or more. That’s no fun, as we don’t have air conditioning at home or at day activities.

The coming week should be exciting. Tomorrow, the day activities staff are taking some fellow clients and me to a local park and having lunch at a restaurant there.

Next Thursday is my birthday. I love it each year. We are going to eat at an Irish pub with my parents then. My sister and her husband are coming over for a visit on Saturday.

How have you been?

Summer Memories: Camping at Vlieland

A lot of thoughts have been floating through my mind that I’ve wanted to blog about, but I couldn’t motivate myself to actually write. I’m not even sure what about these thoughts I wanted to write, so instead, I looked up a writing prompt again. Over at Mama’s Losin’ It, one of the prompts for this week is to share your favorite summer memory. Here goes.

In the early 1990s, my parents would take my sister and me camping at a campsite called Stortemelk at Vlieland, one of the Dutch Wadden Islands. We would send our baggage there via a now no longer existent transportation company called Van Gend & Loos and ourselves travel there by train and ferry. Our parents didn’t have a car at the time. This made the journey all the more interesting, because we met lovely people on the train.

We would often meet the same people at the campsite, but also we’d make new friends each year. In 1993, when I was seven, I remember we collected shells and bird feathers and such and put them on exhibit near our tent.

In 1994, we went again and this year was the year we built a number of treehouses. I was eight at the time and my sister was six. I still had a little vision, so I was able to join in with the rough-and-tumble play of the other kids. I loved this vacation most.

After that year, we stopped going to Vlieland for several years. The reason was our move from Rotterdam to Apeldoorn, so our parents wanted to use the summers to get to know their new city. When we returned to Vlieland in 1998, it was a lot less fun. I was twelve by this time and too old for treehouses. I was also too blind. I could no longer find my way to the campsite store or anywhere on my own.

The last time we went to Vlieland was in 1999. I have very few memories of that trip. I liked going again but probably just because I was used to the routine. It was no longer fun.

Mama’s Losin’ It

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.

Travel: My Most Enjoyable Vacation #AtoZChallenge

Welcome to day 20 in the #AtoZChallenge. I am feeling a bit frustrated with myself at the moment and as a result not as inspired to write. I hope this mood will lift while I’m in the process of writing this post. Today’s topic is travel. I was inspired to write about this by a nightmare I had last night, which was about a summer camp I attended in Russia in 2000. I don’t want to revisit that right now, so will instead be writing about my most enjoyable vacation.

This was, incidentally, also a summer camp. I attended the International Computer Camp for blind and visually impaired students in England in 2002. Because of my negative experiences with the summer camp in Russia, I had my reservations about going to this camp. Of course, this time I wouldn’t be the only blind person, but I still worried that I wouldn’t fit in.

The computer camp was held at a college for the blind in Loughborough, a town in the East Midlands. For this reason, we also took a trip to the West Midlands to see the Black Country museum or that’s what I remember it being called. This was something about the industrialization of England, but I wasn’t able to follow it much.

For most days, we had two workshops we could attend on computers and technology. I at the time had just discovered the Internet and was excited to learn what cool tech there was out there. I attended some workshops on word processing, but also on music and audio. I was also lucky enough to be on the editorial staff for the camp newspaper. I loved this and this was probably one reason I later began an online diary.

The staff worked at various disability agencies in their respective countries. One person I remember well worked at the University of Karlsruhe, Germany. He helped visually impaired students find their way through college. He taught a workshop on studying abroad, though it was more of a general survival skills for blind students workshop. This was perhaps the best experience I had there. It helped me realize that I wasn’t the only blind person out there trying to follow her dreams.

This was also the general message I took home from the camp: I am not alone. I met lots of blind and visually impaired young people from across Europe who were facing the same issues I was.

I returned to the international computer camp in 2003, this time in Switzerland. I liked that a little less, possibly because the Dutch staff who attended this time were a bit more pushy about my independence. I still enjoyed it though.

Independence Training: My Journey Through Rehabilitation Programs #AtoZChallenge

Welcome to day nine in the #AtoZChallenge. I wasn’t sure what to write about till literally minutes ago. My support coordinator was in touch with the long-term care funding agency today. I still can’t disclose details, but it brought back memories of all the rehabilitation and training programs I’ve been in. Let me share.

I didn’t get a lot in the way of independence training while at the school for the blind, but I got some. It wasn’t efffective though. I don’t know why, but part of the reason was probably my parents constantly arguing with the school on what was important for me to learn. Another reason was my struggle with generalizing skills I’d learned at school into other settings. Once I went to mainstream secondary school, I didn’t get any independence training at all. I was pretty bad at life skills by the time I graduated high school.

I decided not to go straight to university after high school. Instead, I chose to go into the country’s only residential rehabilitation center for the blind’s basic program. I learned some skills, but still had trouble making use of them in the real world.

The same happened when I went into an independence training home. At first, I thought highly of myself and wanted to do things independently I really couldn’t. My plan was to get training for eight months and then leave for university. Those eight months became eighteen and then I was basically made to go to university.

I tried a ton of independence training while hospitalized on the psych unit too. It didn’t work. Whenever I tried to do something independently, such as clean or travel using my white cane, I struggled greatly. I didn’t fully realize this, not even at the long-term care assessment last January, but I really overestimated myself. My husband can attest to that. He’s had to get me out of trouble many times.

Why I struggle so much, no-one has been fully able to figure out. It’s probably a combination of my multiple disabilities (blindness and cerebral palsy) and my emotionally low functioning level.

It’s been recommended that I get more independence training. Maybe, after I complete dialectical behavior therapy for my emotion regulation issues, I’ll not feel as frustrated with myself and be more able to learn. I don’t think this is going to solve the problem though, since doing something with someone present, isn’t the same as doing something on your own.

Blindness: Dealing With Vision Loss #AtoZChallenge

Welcome to day two in the #AtoZChallenge. Today, I am going to tell you about my most obvious disability: blindness.

I was born prematurely. When premature babies could first be kept alive in incubators in the 1940s and 1950s, thousands of children became blind due to a condition first known as retrolental fibroplasia (RLF). The first known cause of RLF was excesss oxygen, as these babies were kept alive because of ventilators and no-one knew that too much oxygen could do harm too. Once doctors and nurses started being more careful with oxygen, the number of RLF cases decreased. However, still, babies develop this condition until today. The name of the condition got changed sometime in the 1970s to retinopathy of prematurity (ROP).

I was born in 1986. At the time, the first sight-saving treatments for ROP had become available. However, early detection is still key to timely intervention. At the time of my neonatal intensive care stay, the pediatric ophthalmologist specializing in ROP was unavailable, so my ROP remained undetected until it’d reached an advanced stage. I did have sight-saving surgery when I was about five-months-old, but I still had only about 20/400 vision left in my better (left) eye.

The bad thing about ROP is that, even though it isn’t in itself degenerative once the baby is out of the NICU, it can lead to further complications throughout life. These can then lead to further vision loss. I developed a cataract on my right eye at age seven. I got it removed, but couldn’t get a lens implant at the time. I could’ve gotten one when I was older, but by this time, my vision had already further deteriorated.

At age eight, when I had only “hand motion” vision (which corresponds to about 20/1000) in my better eye, my parents and the doctors decided to give up on further treatment. I didn’t like it, but I had no say in the matter.

From that point on, i was treated like I was totally blind. I wasn’t, but to a sighted person, 20/1000 looks like not worth it.

At age twelve, I suffered a retinal detachment in my right eye. From that point on, I was blind apart from slight light perception in that eye. I also suffered decreased vision in my left eye, though I considered myself having some minimal functional vision until I was around 17.

Now, I measure as having light perception in my left eye only and no vision in my right eye at all. Light perception is the ability to discern whether it’s dark or light in a room. For example, people with just light perception, can tell the difference between daylight and nighttime, but nothing else. I have some environmental light perception too. Not sure what the correct term for this is, but it means I can detect where for example a window is located. Occasionally, when the light is right, I still have object perception for large objects such as cars or people (within a few feet’s distance). I do not have form perception though, so I do not see the outline of objects.

In 2013, I had cataract surgery on my left eye. I had suffered a cataract on that eye ever since 2001, but, in keeping with my parents’ view, wasn’t going to have it removed. I finally took the step to ask for surgery when I was 27. I didn’t have my hopes up too high. I mean, the university hospital ophthalmologist had gotten my old records from age eight and hoped I’d get that amount of vision back. I just hoped for some color perception mostly, The surgery again was a partial technical success, in that they couldn’t give me a lens implant again. They offered me a second surgery to place it, but the doctors were by this time able to see my retina had atrophied and offered me little hope. I decided not to pursue the second surgery.

Dealing with vision loss can be hard. I mean, to a sighted person, I am considered blind from birth, but I still valued my residual vision when I had it and miss it now that it’s gone.

Five of the Most Significant Events in My Life

And once again, I didn’t post for nearly a week. I am beginning to feel pessimistic that I’ll complete the A to Z Challenge in April. However, I still would very much love to make it happen. I am pretty uninspired though.

To get back into the writing habit, I am choosing to write about a topic I’ve already posted about on my old blogs a couple of times. It is good though for my new readers of this blog to get to know me. I am going to share a list of important events in my life. Because I need to explain a little about each, this post may become a bit long.

1. The day I left the hospital at three months of age. I was born over three months premature and had to spend the first 94 days of my life in hospital. The unit I was on is commonly referred to as neonatal intensivecare unit or NICU for short, though I wasn’t in actual intensive care the whole time. I was on a ventilator for the first six weeks and, after I learned to breathe on my own, was moved to medium care, the general ward and eventually home. In the NICU, I sustained a brain bleed and developed an eye condition called retinopathy of prematurity. These two conditions are the main cause of my disabilities. I was finally discharged from the hospital on September 29, 1986.

2. The day I started special education. I started school, as most children here in the Netherlands did at the time, on my fourth birthday (June 27, 1990). I started in the first year of Kindergarten, which takes two years here. Just before the end of my second year in Kindergarten though, on May 11, 1992, I was moved into special education for the visually impaired.

The reason why I had to transfer remains a mystery. My parents say it was because I had to learn Braille, but I didn’t get to learn that till over a year later and only because a totally blind boy joined my class. The school was generally only equipped to educate those with low vision. Besides, the first special school my parents chose for me, was for those with mobility impairments. I was turned down because cerebral palsy isn’t my primary disability.

My inner five-year-old holds some memories of this situation. In our memory, I was ill with what could’ve been a partly psychosomatic illness just before moving to special ed. I cannot prove this though.

3. The day I started mainstream secondary school. My parents fought for years to get me out of special ed again. If I have to believe them, they fought from the moment I started in special ed to get me out again. They were convinced I’m far too intelligent for special ed, despite the fact that most schools for the blind offer a normal elenentary school curriculum. Anyway, they finally succeeded after taking me to the third ed psych in eighteen months, a psychologist who’d never even seen a blind person in his practice. This was also when I got labeled as gifted with a verbal IQ of 154. These three digits haunt me till this day.

I started mainstream secondary school on August 25, 1999 at my city’s grammar school. Those six years were awful. I scored above-average academically, but struggled socially and emotionally. I dissociated through most of my time there and hardly have any real memory of it.

4. The day I suffered my psychiatric crisis. After graduating high school in 2005, I’d taken two gap years to work on independence. While in my second gap year, I was diagnosed as autistic. Leading up to this was my increasingly falling apart at the independence training home. I got sent out to Nijmegen to live on my own on August 1, 2007 though. I fell apart within three months. By late October, I was wandering everyday, had multiple meltdowns a day and ended up suicidal. I was eventually hospitalized on November 3.

5. The day I got kicked out of the hospital again. I remained in a psychiatric hospital for 9 1/2 years, but eventually got kicked out on May 8, 2017. I believe the real reason is the government budget cuts to mental health, but my treatment team at the time blamed me. I have been living semi-independently ever since. As regular readers know though, I’m in the process of hopefully getting into long-term care again.

PoCoLo