Tag Archives: Independent Living

An Eventful Week

And again I didn’t write for an entire week. The past week was rather eventful and stressful. I have been distracting mmyself by going on Tumblr and attempting to start something up there. I’ve had one Tumblr account or another ever since 2008 but never quite understood how it works and still I really don’t. However, I’m enjoying the community of mental health users there.

The reason the week was stressful was because of a lot of emotion-evoking events. First, my grandma died Saturday night. This caused a lot of emotions in me, because my grandma was the only family member I had a good relationship with. Her funeral was yesterday and it was good to see a lot of aunts, uncles and cousins I rarely see at all. The funeral service was good. My sister spoke on behalf of the grandchildren. I couldn’t help but laugh at some of the stories she told.

Another emotional event was the orientation meeting with the coordinator from the Center for Consultation and Expertise (CCE) on my situation re day activities. In attendance were the CCE coordinator, my day activities and home support staff, my mother-in-law (who acts as my informal representative), the local authority social consultant, my psychiatric nurse practitioner and me. The coordinator does the first meeting. If she decides it’s necessary, she’ll involve one or more consultants who will help find solutions to the situation at hand.

As it turns out, my day activities staff were hardly open to any suggestions from the CCE coordinator that would allow me to stay at this center. They kept making excuses about my meltdonws (which I haven’t had in a while) causing seizures and aggressive outbursts in other clients. This never really happened. Besides, these other clients get seizures/outbursts from a lot of behavior that other fellow clients exhibit too. I myself witnessed this on Monday.

We discussed the reasons for my meltdowns. Sensory ovelroad, demands and stress often set me off. The CCE coordinator asked whether I’d ever had a sensory integration assessment. I haven’t. It was at one point suggested by another consultant but my then psychologist (the one who kicked me out of the institution last year) dismissed this. Same for the trauma therapy recommended by the CCE consultant when we had a consultation in 2010.

We also discussed my living situation. This had not been the direct reason for contacting the CCE, but now that we had them involved anyway, my home support coordinator suggested we discuss this too. It is really hard. I mean, I experience a lot of stress now that I live independently with my husband. I was open about the worsening of my depression, including suicidal thoughts. I don’t want to die though, so the CCE coordinator asked what I do want. I honestly don’t know. At one point, the CCE coordinator also asked me directly whether I’d have wanted to live independently had the psychologist not kicked me out of the institution. I said “No”. My home support coordinator talked about the possibility of me and my husband moving closer to supported housing. This may be very difficult bureaucratically, as psychiatric diagnoses (including autism) don’t qualify you for long-term care, but maybe the CCE can help us figure this out.

I have mixed feelings about the meeting. I am somewhat hopeful but also a little pessimistic. Since the day activities staff aren’t open to solutions that will allow me to stay there, we’re at the mercy of a possible other day activities center. I hope we can find one.

Keys: My Time on a Locked Psychiatric Unit #AtoZChallenge

Welcome to day 11 in the #AtoZChallenge of random reflections. The letter K is really hard for me. It was everytime I did this challenge. Somehow, each word that comes to mind starting with K doesn’t seem right. For example, the 397 journal writing prompts and ideas eBook says “Kindness”. In the A to Z of me I chose “Kids”, but I wrote about my childless life already. Now that I write this, something pops up in my mind. In 2016, when I did the A to Z of mental health, I posted among other things about “Keys”. Today, I am picking up this word and reflecting on my sixteen months on a locked psychiatric unit.

It was never intended by the psychiatrist who admitted me to hospital in 2007 that I go to the locked ward at all. However, the open ward was full at the time of my urgent admission, so I was placed on the locked ward. This was in my parents’ city and I only was there for a week-end. When I was transferred to my own city, I wasn’t even told what unit I’d be placed on, but I ended up on one of the two locked units. It was the “least restrictive” locked unit, which didn’t have real isolation rooms. It did have time-out rooms in which you could be locked up, which aren’t much better.

Two weeks into my stay, my doctor informed me that I could in his opinion transition to the open unit. He however soon made up his mind, as I had terrible meltdowns. This was in fact what kept me on the locked unit for sixteen months, because the open resocialization unit initially didn’t want me.

For the first three months of my hospital stay, I had almost no privileges, which meant that I could only leave the unit accompanied by an adult. These three months were a long time, considering that most people don’t even spend that long in a psychiatric hospital. In the grand scheme of things though, it sounds like a very short time. Within a month from getting some unaccompanied off-ward privileges, I had full privileges and they were never restricted again.

I didn’t really mind being on a locked unit, but it’s still pretty strange. I mean, now that I live independently, I still struggle to leave the house without someone else even to sit in the garden. This is in part due to my terrible orientation and mobility skills, but it may also be a form of continued institutionalization syndrome.

Update on Day Activities

I have not written a diary-style entry in a while, even though I hoped it’d help me write more often. The past few weeks have been rather eventful with things needing to be worked out for my day activities. Not that anything concrete has come out of it yet, but today, I am hopeful that something will.

In early February, we had a “big meeting” to discuss how to proceed now that my day activities hours were cut and I would maybe have to leave this day center. It was decided that we’d involve the Center for Consultation and Expertise (CCE) to help us detail my support needs. In the meantime, my home support hours were doubled as to give my support coordinator some time to help me find a new place.

My CPN took it upon herself to call the CCE. I don’t know how the conversation between her and the CCE person went, but they concluded eventually that my problem was mainly my blindness. I didn’t understand why, since I’d been almost kicked out of day activities for self-injurious behaviors and meltdowns – not your average blind person’s everyday behavior. The whole thing frustrated me to no end, as blindness agencies have consistently said that my main problem is definitely not my blindness and now the CCE was referring me back to them.

When I read my CPN’s notes on the meeting in which she told me about her conversation with the CCE, I got an idea where the misunderstanding had come from. She wrote about my anxiey regarding demands in light of my having to learn new skills. I figured she’d told the CCE person about the recommendation that I get independent living skills training, which is not the CCE’s department. They offer consultations in situations where the client falls through the cracks because of severe problem behavior, after all. Resistance to demands does not necessarily present with severe problem behavior, I suppose.

When I asked my CPN for clarification though last week, I found out that she doesn’t even believe I have severe problem behaviors. I’m not 100% sure either that my behaviors are severe enough for the CCE, but my CPN’s reasoning for dismissing my problem behaviors altogether was rather strange: I wouldn’t be able to be married if I had problem behaviors. She also mentioned that I wouldn’t be able to live independently in that case either, which I understand. Then again, with today’s budget cuts to mental health and long-term care, once living in the community, you’d need to be virtually dead to be admitted back to an institution. Maybe a virtually dead person is the kind of case the CCE usually works on too, and in all fairness, I’m not dead.

I was badly triggered by my CPN’s comments. What mostly triggered me was her saying that I had “escaped” an institution. I hadn’t. I had been kicked out.

Later last week, my support coordinator talked to my CPN about her feeling that we should at least try to get the CCE involved based on my full story. We worked on the application this afternoon, but didn’t finish it yet, as I was getting overwhelmed.

As for finding me a new place for day activities, we currently have two organizations we’re still in contact with. Both are organizations serving primarily intellectually disabled people. Neither has offered me an orientation meeting yet, but at least neither has rejected me yet. Two other organizations did reject me and several others, we are still thinking on contacting but are most likely unsuitable.

“Just Blind”: My Experience With Passing and the Resulting Burn-Out

Last May, I wrote my first post in the 30 Days of Autism Acceptance. I never followed through with the rest of the challenge, but today, I’m inspired to write on the day 2 topic, which is passing and autistic burn-out.

There is a lot of societal pressure to look and act as “normal” as possible. Passing is the situation where people who don’t belong to the “normal” majority appear as though they do. This may refer to disabled people appearing non-disabled, but it also refers to people of racial minorities being perceived as white or to queer people being perceived as straight.

I never fully passed for non-disabled, because I’m blind, but I did try to pass for a long time. People however often could tell that I had some kind of disability even if they couldn’t tell what it was. Interestingly, besides not passing for sighted, I don’t believe I could ever fully pass for neurotypical, except to those who believe an autistic appearance is normal for blind people.

In addition to appearing normal, disabled people are also pushed to achieve those things that are deemed “normal” in society. That is, except when you look so obviously disiabled that people judge you to be too “low-functioning” for that, in which case they usually greatly underestimate your abilities. I may write about that at some other point. There is a lot of pressure even from within the disabled community to perform as well as non-disabled people do. I see this particularly in the blind community, except, once again, when a person is seen as severely disabled enough not to need to achieve.

Until I was twenty, I was almost universally perceived as “just blind”. Oh and presumably extremely intelligent. As such, I had to perform according to my intelliigence, so I had to go to a mainstream, high-level secondary school. All my problems there were chalked up to either my blindness or my high intelligence.

At age twenty, I resided in an independent living training home for the disabled, which had originally been set up specifically for the blind, so most staff had some expertise on blindness. It was there that it first became apparent that I’m not “just blind”. I was referred for a diagnosis and diagnosed with an autism spectrum disorder in March of 2007. Eight months later, while living independently, I completely fell apart. I experienced autistic burn-out. Yet many people still see my diagnosis, my burn-out and my subsequent voluntary admission to a psychiatric hospital, as an elaborate way for me to manipulate people into giving me care.

I never fully recovered from my burn-out, in the sense that I went back to living a “normal” life for a person who is “just blind”. I was in college in 2007. Now, even though I’m out of the institution, I have no plans of going back to full-time education or finding a paid job. Though I may want to attend some part-time education or do volunteer work in the future, I’m now happy to be at a day center doing sensory activities. I am also glad that I was finally approved for home support yesterday.

In this sense, I did in fact recover from my burn-out. I mean, I did not return to the life that essentially caused me to burn out, but I do think my life is meaningful. In fact, I am happier now than I was when I still passed for “just blind”.

I’m Officially Home!: The Road to My Discharge from the Mental Institution

It’s official: I am home. Yesterday was my formal discharge date from the institution. It would’ve been May 1, but got delayed one week because I needed more time to make arrangements for my after care. Today, I’ll share my journey to getting the care I need and living in the house I want to live in with the man I want to live with.

Like I said, my original discharge date was May 1. However, a week before that, nothing had been arranged in the way of after care yet. I’d have my first appointment with a psychiatrist from the community treatment team that Friday, April 28. That was all my psychologist said she was required to do in terms of making sure I am in care once discharged. Apparently, she and the social worker had deliberately handed me the responsibility of making sure I’d have day activities and home support, only without telling me I had been handed that responsibility. I didn’t find out about this till April 26, when I had my “exit meeting”, as my psychologist called it. Call me a cynic, but I immediately thought of the Swiss end-of-life clinic by the name of Exit.

After my “exit meeting”, I was very much in distress. I called the patient advocacy person, but she couldn’t do anything for me, as I’d be in the community team’s hands. I called my husband, who was on the road. Desperate, I called my mother-in-law. She asked for my psychologist’s number and somehow convinced her to give me that extra week. It was suggested to me that all it’d take to make sure I’d have day activities was a phone call to the day activity place manager, who was on vacation during the last week of April and would be back May 2. It wasn’t exactly that simple, but in the end it was close to that simple indeed.

On April 28, I had my intake interview with the community treatment team psychiatrist and nurse practitioner. They were much more supportive than anyone in the institution had ever appeared to be upon first meeting them. I suspect this psychiatrist has never worked for a long-term care unit, as she was surprised I didn’t get any therapy there other than day activities. “But it’s a psychiatric hospital,” she said. There she nailed the reason I’ve called it an institution for years: there is very little in the way of actual psychiatric treatment. In fact, a student nurse at one point referred to clozapine, the last-resort antipsychotic the majority of the patients on my unit take, as palliative care. I know for some people it’s a miracle drug, but for many on my unit, all it did was keep them just about stable enough that they could handle an unlocked door.

Like I said, my meeting with the community psychiatrist and nurse practitioner went well. We discussed my symptoms and needs. They would be contacting the home support team, which is with the mental health agency, on my behalf. If no day activities had been arranged by May 12, when I’d have my next appointment, they would also work their arses off to get me day activities.

Last Thursday, May 4, I had appointments at two day activity places. One is for traumatic or acquired brain injury survivors, while the other is for people with an intellectual disability. I had my doubts regarding the first one, which I’d visited in August of last year. This was only confirmed when I went back for an intake interview. It was all very formal. Though this could’ve been because I had already visited the place, it made me feel a little unwelcome. When I disclosed I was also going to look at the other place, the staff at the first place said this might be more suitable indeed. I’d still be welcome at the brain injury place. However, I felt there was too little I could do independently enough there.

I had a taxi drive me to the other day activity place. When I opened the door, some clients welcomed me. They found a staff member, who seated me in a spare room and poured me a cup of coffee while I was waiting for the head staffer to come see me. I talked to him and to one of the staff at the group I’d be placed in. The “orange group” is a group of relatively capable intellectually disabled people who do simple manual labor tasks like packaging, sorting etc. Fortunately, there is no pressure to be quick or do it perfectly. I was a little worried the tasks would be incredibly boring and too difficult at the same time, but I realized it’d either be this or no day activities. Besides, the staff and other clients were very enthusaistic and welcoming. It looked like I might actually have day activities right after my discharge.

Yesterday, however, I had a meeting with the social consultant in charge of my case. The day activity place had already made all arrangements so that I could start “working” there and in fact, yesterday morning I was awoken by the taxi driver ready to drive me there. I had clrearly told the day activity staff that I’d first meet with the social consultant and start “working” on Tuesday, not Monday. For a bit, as I met with the social consultant, it seemed as though it’d all been one big mistake and I wouldn’t be able to start day activities today. However, late in the evening, I received an E-mail from her saying she had pre-approved me for day activities and I could in fact start “working” today.

Dear Transition

Like I said a few weeks ago, I bought the 22-day life transitions journaling workbook. I didn’t use it consistently, so I only finished the first day’s exercise and read the one for day two. It sounded particularly hard to me, but today, I’m trying to take up the challenge. The assignment is to write a letter to the transition in your life, in my case, the move out of the institution. You should be as honest as possible and can rant all you want. Then, let the transition respond. Here goes.

Dear transition,

Screw you, why do you have to happen? Why can’t things just stay the same. I know that’s not ideal, but that’s all I’ve known for the past 8 1/2 years. This institution life feels safe. Call me dependent all you want, I don’t care. I don’t know what happens when I leave the institutio. I fear I’ll fall flat on my face and not be able to cope.

Besides, I never planned on living independently again. I never learned to cope in a less restrictive environment, because that wasn’t the goal. Even since it’s been the goal that I live with my husband for the past 1 1/2 years, I still never learned to cope. I tried an afternoon at home here and there, but I still feel utterly overwhelmed when I’m at home for longer than a few days.

I don’t know what you expect of me anyway. My husband wants me to live with him, but I don’t even know wha the expects out of me. He probably expects me to take care of some housekeeping, which I haven’t done i years. Evernything else is uncertain too. I haven’t found day activities, haven’t been accepted by the mental health agency. I know you will happen – I will move in with my husband -, but I don’t even know when. So stop bothering me.

Astrid

Dear Astrid,

You sound angry at me. I’m sorry about that, because I never meant to piss you off. I am uncertain, I know, and I know that scares you. I know your control has been taken away by the psychologist, who decided seemingly arbitrarily that this is the point at which you need to stick to your decision. Then again, she’s right. You can’t waste your life away in the institution, and i know you don’t want to either. It may feel safe now, but safety isn’t all you need. You want to develop yourself, too.

Try to be confident that your treatment team will put a safety net in place should you not be able to cope. Try also to focus on the opportunities I will award you. I know you have so many dreams that you sometimes don’t even want to write about. I know that I won’t guarantee you that you’ll be able to make your dreams come true, but sitting on your butt in the institution certainly won’t make them come true. Try to stop dreaming and fearing and start living. Good luck.

Your transition

Transitioning: The End of the Tunnel

On May 1, Mari L. McCarthy started the 22-day life transitions journaling challenge. I didn’t sign up, since I had just failed on committing to the whole health challenge in April. However, today I bought the challenge eBook – from KObo, not Mari’s own site, since it’s much cheaper on Kobo. Since I am about to start in what may be the most important transition of my life, I thought I’d try my hand at the challenge. For day one, we’re supposed to meditate on where we are right now and where we want to be headed.

I visualize the point where I’m now as being at the beginning of a tunnel. It’s not necessarily a dark tunnel, but I can’t see the end of it as I look into it. Nonetheless, i know it will end somewhere in the tiny village, in my husband’s and my home. I can only head this way, but since I can’t see what’s inside the tunnel, I cannot see what’s going to come onto my path as I head into the tunnel. I know where this will end, but I don’t know how or when. After all, no definite date has been set for my discharge from the institution. Though I will have the “kitchen table talk” with the social consultant on Monday, right now I have no idea how I will cross this tunnel and what I’ll find at the end of it.

I can however hear my husban calling me from the other end. I can hear him cheer me up that it’d be so great and utterly exciting to be together at last. I can hear my psychologist and social worker on my current end of the tunnel telling me that I wanted to go into it and come out at home. Even as I sit here, more than a year into the process of arranging for my transition out of the institution, I still am not sure that this is really what I want.

Sometimes, I idealize the end of the tunnel, what it’ll be like to be home. I see my husband lovingly embracing me. As he takes me into his arms, I know that I’m happy being with him and this was the best decision I could’ve made. I go to day activities. My psychologist already shot the snoezelen idea I came up with a few months ago, so I’ll go swimming and doing yoga and going for walks instead. I will meet some nice people at day activities or through the community. I’ll be much more independent than I am now, being able to do some cooking and cleaning on my own. I’ll eventually take up some classes again. My husband loves me when he comes home from work and we’re both happy.

At other times, such as right now, I devalue the end of the tunnel. I look at it as one dark pit in which I’ll fall. My husband and I constantly step on each other’s toes. When he’s home, I’m annoyed by him and he’s annoyed by me. When he’s at work, I’m at home alone sleeping the day away or daydreaming of harming myself. I don’t even have my blog anymore, since my husband doesn’t want me to write about my life at home and I can’t think of anything else to write about. I have nothing left except myself.

However, I will get through. I say this so that even if I don’t believe in it now, I won’t leave a bad omen by being all negative. I will make this transition and it may be hard, but it’s also good. No matter what, my husband loves me.

Breakdown: My Crisis of 2007 #Write31Days

31 Days of Mental Health

Welcome to day 30 in the #Write31Days challenge on mental health. Today, I discussed the details of the mental crisis that I had in 2007 with a nurse. This helped me feel heard but it also was a bit unsettling. I vividly remember many of the details. I feel compelled to share my story here, but I don’t know how safe a public blog on the Internet is to do so. I shared the details in a post on my old blog (which can still be more easily found by googling my name than this blog) about a month after the crisis happened. I published the raw story back then, complete with every detail of where I was and what I did. I edited it more than a year later for fear it’d ruin my chances of ever having a normal life. If future employers (of which I think I’ll have none) ever read that I’m a nut case and spent eight years in a mental institution, they’ll reject me no matter how vividly I describe the crisis that led to said institutionalization. That being said, the original story was quite badly written. I don’t want to read even the edited version now. I’ll just share what I feel like sharing now.

I remember the crisis state started right after daylight saving time ended on October 28, 2007. Of course, I was spiraling down into crisis from the moment I started livign on my own in August and I had a minor crisis about once a week. The week of October 29, I started completley losing my mind. I wandered about in the dark each evening. The police took me to the police station a couple of times that week and called the crsis service, but they couldn’t do anything.

In the afternoon of October 31, I was called by the crisis service. I still remember the name of the crisis service nurse calling me and if I ever run into her again, which is unlikely, I’m not going to be pleased. She told me that I just had to find ways to distract myself and that a hospitalization would mean I needed to go back on medication. (I’d quit an antipsychotic three weeks prior. No-one later on drew the connection.) I didn’t care about going on medication one way or the other, but I couldn’t mutter a proper response.

On November 1, I took a trip to my parents’ city to collect a landline phone. I don’t have a clue why I had to sleep over there for a night just to collect a phone. On the way back to my city the next day, I had a huge meltdown. This wasn’t unusual for me when returning to my city from my parents’, but for the first time, the railroad service employee who was assisting me to get on the train back to my city, called the police. I hardly realized I was speaking to the police when they told me to leave the station. I wasn’t sure what to do at first, so wandered around. I remember somoene, no clue who, told me that if I could behave, I could come back to the station and get on the train to my city.

I decided to go to the training home which I’d been a client of before going into independent living. I was allowed in, but once the staff found out the police had been called on me, they asked me to leave. I can’t remeber what I did throughout the afternoon. I was supposed to have an early train, but didn’t end up in my ultimate crisis till 8:00 PM. I remember getting some French fries at a cafeteria near the training home and calling my independent livign support worker that I’d forgotten to pay my rent for November the day before.

A housemate from the training home offered me to stay with her for the night so that we could find a solution the next morning. The staff went into her apartment and told me to leave. They initially gave me some time, but I left instantly and had the hugest breakdown I’ve ever had. I was hardly aware of my surroundings as I told some people’s voicemails that I was going to commit suicide. I inferred the time from what the bus driver, on whose bus I’d embarked, told the police. It was the 8:01 PM bus around the eastern part of the city (in that city, buses go in circular routes or at least they did back then).

I was taken to the police station by the police again. This time I was in my parents’ city so the route to crisis services was even longer. The police had to call a community physician who was the most umempahtetic jerk of a doctor I’d met by that time. (I later was treated by an authoritarian psychiatric resident, but she never had to talk to me in the midst of a crisis.) The doc told me I was making people feel responsible. While I can see eight years on that he was right, I couldn’t grasp this back then. I don’t remember my response. The community physician called the crisis service. I have recurrent dreams about the psychiatrist, the only one whose name I remember. In my dreams, I run into her again as I get treated at the mental health agency near the tiny village I’m moving to.

I am a million times thankful that this psychiatrist didn’t stick the BPD diagnosis on me, even though in retrospect my crisis could be interpreted as a typical BPD thing. Instead, she talked to me – she showed much more empathy than the community physician and eventually labeled me with adjustment disorder, which basically means an extreme response to stress. She suggested I be admitted and right away clarified that a suitable living solution would need to be found for me while I was in the hospital. No-one could’ve known back then that it’d take eight years and I’d be going to live independently once again after that.

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Mental Health Goal: Move In with My Husband #Write31Days

31 Days of Mental Health

Welcome to day 26 in the #Write31Days challenge on mental health. Today, my husband and I accepted the house to the right side of Arnhem we were offered on Thursday. I am therefore cheating a bit with the 30-day mental illness awareness challenge and choosing the question from day 29. Actually, it isn’t cheating at all since I never followed the challenge to a T. Anyway, for day 29, the question is about some of your goals with regard to your mental health.

My main goal that I’ve been working on for the past nine months now is to eventually be able to move in with my husband. Since we’re moving to the right side of Arnhem in probably less than a month, you may think there’ll be a bit of a delay in finding me care, but things never went that fast anyway. I hadn’t had an intake interview with supported housing on this side yet. Neither had a definite decision about allocated care hours been made. Remember, we’ve been working on this goal for nine months. Things go that slowly.

One factor in this slow-going process was the fact that my treatment team and I were waiting for the consultation with the autism center we didn’t have till the middle of May. Looking back, there’s not a single thing this center has been helpful with. Another factor, however, was the fact that my husband and I had been planning on moving for months. Even though my psychologist said she’d make arrangements as if we weren’t going to move, I at least have a bit of hope (or illusion) that now that the elephant is out of the room, we can actually start making arrangements for my care.

Apart from preparing for living with my husband, I don’t have any real goals for my mental health treatment right now. However, living with my husband requires a greater level of emotional self-control than living in an institution with 24-hour care. My husband works irregular hours and may be working long days. I won’t have support available when I need it right then during my husband’s work hours. If a support worker will be able to come out to the tiny village on call at all, it’ll take at least fifteen minutes if they can leave right away. Fortunately, I am relatively good now at spending time without care if I know at what times I’ll be abe to enlist a support worker or my husband will be home. I still need to work on improving this ability, because my husband cannot always tell when he’ll be home.

When I do live with my husband, additional goals for my mental health will have to do with other aspects of emotion regulation. I want to finally learn to kick the binge eating beast, for example. There are undoubteldy other negative coping skills I need to learn to replace, but I can’t think of them right now. In short, I hope to eventually be able to participate in day activities and live with my husband without too much emotional turmoil or behavioral outbursts.

How Mental Illness Has Impacted My Life #Write31Days

31 Days of Mental Health

Welcome to day 20 in the #Write31Days challenge on mental health. Today, after sharing a number of informational posts, it’s time for a personal one again. I’ve decided to pick another question from the 30-day mental illness awareness challenge. This one is about the effects your mental illness has had on your life.

In 2005, I graduated from high school with good grades. The principal held a brief talk about each student before they’d receive their diploma. About me, he said I was going to study English in Nijmegen. This was my original plan for after high school, before I’d decided I wasn’t ready for college yet and wanted to go to a rehabilitation center for the blind first.

Until I graduated from high school, I was the only person who noticed something was off with me. That is, my parents and teachers did notice, but felt I was or should be capable of solving my problems with my intellectual abilities. By 2005, I was at my highest point in terms of believing I was “just blind”. You might think I had the highest self-confidence, but I didn’t. I was fiercely independent, but also terribly isolated.

By early 2006, I entered a training home for the disabled. I was adamant that I only needed a little daily living skills training and would be off to univeristy and independent living by September. It didn’t work out that way.

Mental illness has impacted many areas of my life. Of course, you could say that it was my blindness. You could say that the people at university in Nijmegen should’ve been more accommodating of my blindness. They weren’t particularly accommodating, but they reasoned all blind students who had previously attended, had been able to succeed with the accommodations they did provide. You might also reason that I should’ve gotten more orientation and mobility training whilst living independently, but twice a week is the absolute most you could get back then and it hasn’t gotten any better. In other words, of course my blindness did contribute to my eventual failure at independent living and at university, but apparently all “just blind” individuals are able to cope. I clearly wasn’t.

It was a common misconception at the acute ward that I was falling apart because of some problem relating to my blindness. I replied to this that, if my blindness was causing me to be suicidal, there’d be much better care for blind people with mental illness, because then each week there’d be a suicidal blind person somewhere. The truth is, I am multiply-disabled, including mentally ill, and it’s not just one of my disabilities that’s causing me to be unable to function independently.

Because I’ve been mentally unstable all my life, I can also not really compare my situation before and after the onset of my mental illness. I can only compare my situation to the ideal I had in mind for myself. Doing so, I realize that mental illness has affected my education. I can no longer go to regular college and can only do distance learning courses one at a time. This means I will most likely never earn a certificate that’s worth anything.

Mental illness has also impacted my work life. That is, due to mental illness, I have none. Of course, I did get disability benefits without a problem when I was eighteen and “just blind”, but, as my parents reasoned, this would be a temporary situation. It’s now more than likely that I’ll be on disability for life.

Mental illness has made independent living essentially impossible. I pretty much need to be able to reach someone for support 24/7. It doesn’t have to be a professional carer per se. At least I hope that in time, my husband will be able to fulfill this role to an extent. This in turn obviously impacts my relationship. However, since my husband was my first boyfriend and I met him when already on the edge of mental breakdown, I have nothing to compare our relationship to. I think in this area I’m pretty well off however, in that at least I am in a long-term, loving relationship.