Tag Archives: Fear

Still Afraid

One of Mama’s Losin’ It’s prompts for this week is to write about something you were afraid of as a child and to share whether you’re still afraid of it. Immediately, an interaction I had with my husband a few weeks ago came to mind that brought back my extreme fear of denatured alcohol.

My husband offered me a sip of vodka because I had a bad cold and he’d heard that strong drinks help with this. They don’t, but I wanted to try a sip anyway just to have an idea of its taste. Then we got talking about the time my ninth grade science teacher distilled alcohol and let us drink some. This would’ve been a totally stupid idea if he were any good at distilling, but well. I had it in mind that we had drank pure alcohol, which my husband said would’ve led to our esophaguses burning up in smoke. Turned out my teacher was really bad at distilling alcohol, because the vodka my husband gave me tasted stronger than I remembered the distilled alcohol tasting.

Then we got talking about mehtanol, a poisonous kind of alcohol, which surfaces at the first distilling round. I remember my father, who worked at my school back then, talking about how some students the year before me were either allowed to taste the first distilling round or almost did so despite not being allowed. I assume it was the latter even though memory tells me otherwise, as I’m pretty sure that teacher would’ve been fired and prosecuted for allowing students to taste something even remotely resembling methanol. My husband joked that if his teacher had allowed him to taste distilled alcohol, even if it was safe, he’d be tempted to fake methanol poisoning just to get the teacher fired.

I was by this time quite scared already. The evening of the alcohol tasting experience in ninth grade, I discovered my vision had worsened. This was due to a cataract, which is a known complication of my eye condition. However, I had the irrational thought for years that if I hadn’t tasted distilled alcohol, it wouldn’t have happened.

You see, I had and still have no clue about the signs of methanol poisoning other than blindness. Even though I ran a much higher risk of going blind from my own eye condition than from methanol poisoning, as soon as I learned about this, I was deathly afraid of methanol poisoning. Since denatured alcohol usually contains methanol, I was scared of that too. I would never touch any surface cleaned with denatured alcohol, afraid that I’d get methanol on my hands and lick it off. Worse yet, in my magical thinking, denatured alcohol could somehow replace tap water. Each time I was about to have a drink of water, I looked at the running tap water to see whether it was blue. After all, in the Netherlands, denatured alcohol is dyed blue.

I still have a pretty bad fear of denatured alcohol. For soap making, I use alcohol spray to make soap bubbles go away, but I somehow never made the connection. As soon as I did, I wanted to discard my denatured alcohol spray. After all, what if some leaked out of the bottle and somehow dripped onto my coconut oil, which I use for lip balm making? Both the spray alcohol bottle and the coconut oil can are tightly shut, but you never know.

I was also somehow scared that I’d accidentally drink denatured alcohol at home. My husband went looking for it to see whether he even had it in the house and he had. He joked that the bottle of denatured alcohol was next to the vodka, which of course made me freak out.

It’s not like I never handle any other poisonous products. I mean, soap colorants and fragrance oils are probably not the healthiest thing either. I also have a few shower products, which I use daily, which state clearly to keep them away from children. I reckon this is for good reason. However, it never crossed my mind to drink shower gel. Not that I would purposefully drink denatured alcohol, but if that can replace tap water, what substance can’t?

Mama’s Losin’ It

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

Realizing I’m Blind

During the #AtoZChalenge, I had all kinds of ideas in my head about what I wanted to blog about once the challenge was over. Now that it’s May and the challenge is over, I however experience a bit of writer’s block. All these ideas that I had during April seem to have vanished. However, O just remembered one of them, which was to write a kind of series discussing topics related to blindness. I am going to answer some of the questions from the Thought Provoker. The Thought Provoker was a monthly question relating to blindness between like 1998 and 2004. The provoking stories and questions are still online. Today, I will write a response to Thought Provoker 10, which asks what a person thinks when they first realize blindness or vision loss has touched their life.

The story seems to be about a person going blind later in life. I was born legally blind. My parents tell me I first realized I was visually impaired at around age seven, when Braille reading was introduced to me. I know my realizing that blindness affected me was a gradual process. At around age eight, I’d ask my parents: “How can yu see that?” According to my parents, it seemed as though I thought I could learn to be sighted.

My parents have always been open about the nature of my blindness. I knew I had a retinal condition. When a great uncle had a retinal detachment and described what it was like, I feared I’d get it myself, because I saw those flashes he described too. It wasn’t that far from the truth indeed.

Strangely, I also feard going blind from totally unrelated, ridiculous causes. Like, I learned about people who drank cleaning products with methanol in them and who subsequently went blind. From that moment on, when my parents used said cleaning product, I was always afraid that I’d accidentally touch it, then lick my fingers and go blind.

In 1993 and 1994 I had two eye surgeries to hopefully save my vision. They were largely unsuccessful, though I still had “hand motion” vision after the second surgery. This means that at 20 feet away, I could see someone’s hand moving but not count their fingers. My parents say that my eye doctor gave up on me after the surgery in 1994. My vision would deteriorate and there was no way of preventing this.

I never accepted this until I entered mainstream secondary education at age thirteen in 1999. I tried for a while to show I still had some vision, but quickly learned it was useless, certainly when compared to sighted people’s. This was the point at which I gave up on myself vision-wise.

Still, my attitude was more one of resignation than of active acceptance. The thought that my sight might be restored someday was on my mind all the time. When, in 2001, a cataract was discovered on my “good” left eye, I pretended to be more concerned with the appearance of my eye than with my vision. Inside, I did worry what had caused this. Was it the distilled alcohol I had drunk in chemistry class the day before?

I finally decided to go pursue cataract surgery in 2013. I wanted to know once and for all whether my sight could be restored and the only way to find out was to get the surgery. It was largely unsuccessful and I gained only very minimal improvement in vision from it. Since then, I realize blindness is not jus tin my life, but I’m in fact totally blind.

The emotion that went through my mind when I realized this was at first stoicism. I never really cared about my sight, I reasoned, and nothing had changed for the worse after surgery anyway. Then came depression and hopelessness. It dawned upon me that this had been my last chance for sight restoration until or unless technology advances. I hate that adage, because it gives me false hope, but I can’t shake it off. In this sense, I’m still in denial.

Fear of Demands

I admit it, I have a fear of demands. I originally wrote that I have a fear of independence. In fact, I thought for a while that I may have dependent personality disorder. People with DPD have a pathological need to be taken care of. They can’t make everyday decisions without a lot of counsel, need others to take full responsibility for the bigger decisions in their life, and may even stay in abusive relationships out of fear of losing someone to take care of them. They appear incredibly easy on therapists at first, agreeing with their every counsel. On a deper level though, this is just a way of maintaining the care relationship.

I still believe I have some traits of DPD, but this last bit is where I realized dependence may not be the core of things. I am not easy on a therapist at all. In fact, I remember being seen as very defiant when I was on a locked unit in 2007 and 2008.

I do have a fear of practical independence, I admit. Then again, it’s more a fear of other people taking contorl over what I can and can’t do practically. I’d love in fact to have full control over deciding what I can and can’t do independently. My fear is not of doing things independently myself, but of other people deciding I can do them independently.

This is where pathological demand avoidance enters the picture. PDA is a conditon along the autism spectrum in which people have a persistent anxiety of direct demands placed on them. They often appear defiant, but underneath this is a deep fear. It could be fear of failure in some ways, but it’s more.

There is an interesting aspect to my fear of doing things independently, and that’s that I can do them fine when no-one’s watching me. Also, when I take the initiative to do things independently I can do them much better than when others tell me to do them. I remember E-mailing around for a therapist to treat my dissociation in 2012 and I had no problem doing it. (I stll had anxiety about it, of course, but that’s more fear of the response.) I called the social consultant and client advocacy organization last week and was fine. On the other hand, when someone asks me to make a phone call or E-mal someone, it’s much harder for me. I also took the initiative to go live with my husband. Then, when my staff took away my control over it and demanded I show certain capabilities if I wanted to live with him, I backed away.

Unfortunately, the care system is built on the premise that psychiatric patients just need a little pushing to do things independently. Despite the rehabilitation and recovery models, which I applaud, people are only allowed to take control if they’ve shown their competence first. I cannot do this. It scares the crap out of me. I want recovery without having to prove myself. Hopefully, I’ll be able to accomplish this when I live with my husband.

Linking up with Finish the Sentence Friday. A little late, i know. The prompt sentence was: “One of the biggest fears that I’ve ever had to face…”.

Fear of Joy

Fear of joy. Some people find this hard to imagine, but it is real for some of us who’ve experienced depressive symptoms. It is real for me.

I have a really hard time experiencing joy without sabotaging it with fear. I don’t deliberately do this, but quite often I tend to feel intense anxiety when I notice I am in a good mood. Then obviously my mood goes down again.

It’s probably because of expectations. There is this man on my unit who always says he’s doing so-so or bad and never says he’s doing well. He says it is because, if he says he’s doing well, they’ll think he’s no longer mentally unwell and will expect him to leave the psychiatric unit. I can relate to this. Now I myself don’t want to be on this unit forever, like this man does. What I can relate to is the expectation that, if I’m well once, I should be able to keep the feeling and not fall unwell again. Worse yet, I fear that if I say I’m feeling well, I will be expected to cope with less support, more independence. In this sense, I can relate to the fear of being kicked off the unit if I say i’m well. Though I don’t want to stay on this unit forever, I do want to maintain a certain level of support.

Of course, everyone, whether we’re mentally ill or not, experiences highs and lows. People who aren’t mentally ill aren’t expected to keep feeling well forever if they say they’re well once. Why should people with mental illness be expected to be cured if we say we feel well once, then? The truth is, no good mental health professional or understanding relative expects this out of us.

Of course, I remember the situation a few years ago where a woman with depression was denied sick leave benefits because she “didn’t look depressed” in Facebook photos. That sort of thing may happen, and I’m sometimes afraid of this too. Like, yesterday I told my named nurse I’m afraid of not getting community support once I live with my husband. The reason is my staff aren’t coming to the tiny village to assist me with my application and the social consultant there isn’t coming to my institution. This means I’ll need to file the application all by myself. Of course, my husband will be there, but I doubt he knows what care I’ll need. Now I’m at once afraid that I’ll not be able to clarify what I need so that the consultant won’t be able to get me care, and that I sound too capable. The care needs paperwork that the Center for Consultation and Expertise created for me in 2013 lists my intellectual giftedness. I’m tempted to delete that in the process of updating it for the current application. The first reason is because I have no clue what significance a high IQ has over a normal IQ when applying for care. I mean, it means I can’t get care from the intellectual disability agencies, but I couldn’t if I had a normal IQ either. However, the other reason is I fear it will be seen as significant by the social consultant and they’ll determine that if I’m so intelligent, I should be able to solve my own problems.

This is what’s behind my fear of coming across like I’m doing well, and consequently my fear of experiencing joy. Of course, like I said, every understanding person should realize that having a good day doesn’t mean being cured of your mental illness. Then again, I’m not sure most people are all that understanding. Could be my stress-related paranoia though.

What My Mental Illness Feels Like #Write31Days

31 Days of Mental Health

Welcome to day 29 in the #Write31Days challenge on mental health. Phew, we’re almost done. I truly find it a challenge and unfortunately don’t find it particularly rewarding.

Today, I’ll give you a glimpse into my unquiet mind by describing what it feels like tohave my mental illness. I have been diagnosed with borderline personality disorder, which is characterized by self-regulation difficulties. It also overlaps with other disorders.

Once, years before I had been diagnosed with any mental illness at all, I read a description on a Dutch site of the “borderline feeling”. It described a starting point at which you are feeling fine, or at least appearing as though you are fine. Then, a minor annoyance occurs. You start feeling frustrated, angry, infuriated. Then you feel sad, depressed, depserate. Fear and then panic also comes in. Finally, all feelings tumble over each other and create a big emotional whirlwind. That’s what the experience of BPD is like.

I can illustrate this with an example. This afternoon, I was feeling slightly on edge because it was time to make afternoon coffee and no-one was available to assist me. Then, when I noticed the nurses were flipping through some seemingly unrelated photos at the nurse’s station, I completely lost it. They had told me they were busy and now they were just chattering! I can’t even remember how the situation progressed, but within minutes I was banging my head, screaming and then ran off. When I came back to the unit (I had the sense of rationality to find my way back myself), I accused the nurses of faking being busy and ignoring me. They had truly ignored me (or been oblivious to me at least) when i stood at the nurse’s station and I still cannot be sure what thing was keeping them so busy. That being said, I couldn’t politely ask them whether they truly didn’t have time to help me make coffee.

We had a group discussion, in which I was again relatively calm. Then we had dinner, after which I went on the computer for a bit. I still was feeling slightly on edge but not over the edge. I wanted to talk to the nurse, so made use of my daily talk time to discuss my tension. However, I couldn’t get it out clearly what I was feeling and why. At that point, all emotions started coming together and I became angry and depressed and fearful at the same time. I went outside, accompanied by the nurse, to blow off some steam.

Usually, this feeling I had in the evining for me is triggered by some flashbacks or relivings of past “trauma”. I put that between scare quotes because the events I am reliving can be relatively minor. However, they can cause distress nonetheless.

During such episodes I also often feel dissociated. I used to completely regress into a child mode, but now I just feel as though I’m small and start speaking or babbling incoherently but don’t fully act like a child.

When an episode is severe, I may resort to self-destructive behaviors such as binge eating or self-injury. Usually, these behaviors temporarily relieve the tension but obviously they aren’t the solution. I often relapse soon after I engaged in destructive behaviors. With PRN tranquilizers, especially benzodiazepines, the same used to be true: they temporarily calmed me down, but when they wore off, I was increasingly agitated. Research shows that borderlines often become more agitated and may become aggressive when given benzodiazepines, because benzodiazepines reduce their anxiety and thereby their impulse inhibition. I do not personally experience this.

Hope Not Fear #MondayMusings

“May your choices reflect your hopes. Not your fears.” – Nelson Mandela

This quote was one of the writing prompts for last week’s Friday Reflections. However, I had already written about another prompt, and in fact, didn’t find out about this prompt until I’d written my post. Since this quote is very fitting for my life, I thought I’d write on it now.

I have often been guided by fear in the choices I made in my life. For most of the eight years of my institutionalization, I have feared taking the leap towards independence. This led me to reject my husband’s idea of having me live with him, which he had voiced long before our wedding. I’d rather live in a supported housing accommodation, because I was deathly afraid of the situation I’d been in when living independently in 2007. At the time, I’d not coped from the start but I’d been on the waiting list for mental health services and the crisis team didn’t feel my situation was serious enough. Ultimately, it took me becoming suicidal in another city to get me the help I needed.

By letting my fears dictate my choices, however, I was not taking chances, for taking chances requires taking risks as well. Because no supported housing place could accommodate my needs, I remained in the institution for presently almost eight years.

I had a boyfriend and later a husband, of course, and I was and am totally in love with him. My fear guided my choice not to go live with him, because I feared if I needed to be admitted to the psychiatric unit again while living with him, he’d abandon me. Never mind that he stuck with me through eight years of institutionalization.

yesterday, I saw a thread on a Dutch eating disorder forum I particpate on that asked where you would be in ten years. I will write a more elaborate post on this later on, but what it taught me was to have hope. Still having an optimistic attitude from last Friday’s meeting with the social worker, I realize now that I need to let this hope shine through when I make my choices.

I remeber in high school needing to make SMART goals. The S stands for “specific”, and it had as an explanation: “Write down what you want to achieve, not what you want to avoid.” For example, you’d write down “pass Latin”, not “not fail Latin”. The Mandela quote I started this post with, illustrates the difference: while in a way, “pass” and “not fail” are the same, “pass” is based on hope, “not fail” on fear.

Back to my situation with regards to my going to live with my husband. I have often based my goals on fear, saying for example that I wanted to avoid being overburdened. I could reword these, saying for example I want to be supported. That is a much clearer, but also much more optimistic goal.

This post was written for #MondayMusings, which I co-host with Corinne of Write Tribe this week (see her post too). Please feel free to join in. Click on the button below to be taken to the linky.



Everyday Gyaan

Five of My Biggest Fears

One of the questions in the 31 days of BPD challenge asks us to list five of our worst fears. I just came across a journaling prompt that asks the same quesiton, but had me explore these fears more in depth. I don’t know where this will take me, but I’m going to list some of my fears and journal about them.

1. Demands. This is really my number one fear. I go crazy everytime a person expects me to go out of my comfort zone. It isn’t that I can’t go out of my comfort zone per se. I take leaps out of it on my own regularly. It’s more the pressure from others that I fear. For example, I tend to be far more capable as far as practical skills are concerned when no-one is looking. I also sometimes take the initiative to try new skills when people are looking but are not expecting me to do these things. On the other hand, when someone tells me I can do something and demands I demonstrate this ability, I freeze, flee or fight.

2. Growing up. Sounds weird for someone who is almost in her thirties, but I mean this in some ways related to the above one. However, it is different in that growing up for me means missing out on things expected of people my age as a result in part of my demand avoidance. I am not sure this dislike of growing up is truly a fear in the traditional sense of the word. It seems it’s more like a sense of dissonance, because in some ways, I’m still a teen at heart.

3. Abandonment. This is really the root fear that causes fear of rejection and on the surface fear of crticism in general. I am a terrible grudge-holder myself, but also tend to hold on to shame for a long time. As a result, I tend to fear that people are going to abandon me if they’ve been even slightly critical of me, because I tend to assume these people hold onto grudges for as long as I do.

4. Illness. I admit it, I’m somewhat of a hypochondriac. I fear falling ill with a life-threatening condition all the time. Then again, I also tend to be fascinated by this possibility. For example, I am drawn to reading books on people with life-threatening or life-altering illnesses. In this sense, my attitude towards this possibility has changed over time. In 2008, I was convinced I’d die that year and it scared the crap out of me. Now, I’m more fascinated than fearful.

5. Poison. I have mentioned this one before I believe. I have always had this irrational fear of being poisoned. I also may exhibit some magical thinking related to this. For example, I used to believe that tap water was really the latest poison I’d heard of. Because of my fear of poison, I developed some compulsive behaviors. For example, when I still had some sight, I’d check the color of liquids I was about to drink to make sure they weren’t poison. I did similar things in relation to the fear of illness I mentioned above.

Mums' Days
Mami 2 Five

Unusual Fascinations and Fears in Autism #AtoZChallenge

Welcome to the A to Z Challenge on autism, day 21. Today for the letter U, I will focus on unusual fascinations and fears in autistic people. This is mostly a personal post.

Many autistic people have one or more special interests that they obsess over. In the previous edition of the psychiatrist’s handbook, the DSM-IV, these interests were said to be abnormal either in intensity or focus. I discussed intensity when I talked about obsessive and compulsive behaviors. Focus refers to an interest in an abnormally narrow aspect of a topic. For example, I used to be interested in public transportation, but only insofar as I could memorize bus and metro routes.

Another DSM-IV criterion of autism was an unusual fixation on (parts of) objects. This could include collecting a specific object, as I discussed before. It can however also refer to fixation on parts of objects rather than the whole. A classic example of this is a child who spins the wheels of a toy car compulsively rather than playing with the toy.

Unusual fears are also common in autistic people, particularly those with emotion regulation problems (such as people with McDD). A person with autism or a similar condition often creates illogical relations and jumps to irrational conclusions. For example, Gunilla Gerland wrote in her book A Real Person that she thought that her sister would come home if the newspaper lay in a certain position on the table, so when someone moved the newspaper, she thought her sister would never come home again. In a Dutch book on autism, I read about a boy who heard a grey wolf had been seen somewhere. He was afraid that the wolf would come into his home, even though it had been seen nowhere near his city.

I draw similar conclusions which lead to fear. For example, in our apartment, my husband and i have a taxus on the balcony. Since I know taxuses to be poisonous, I don’t want to go on the balcony, fearing that somehow this taxus thing will kill me.

Fear-inducing things or situations can also be a person’s special interest or fascination. For example, I used to be fascinated by the Brazilian wandering spider, even though I was also fearful of it.

Of course, magical thinking and related fears are common in typically developing children too, but in autistics, they last much longer. Autistic people may also benefit from a different approach to reassurance. The boy in the Dutch book, for example, was reassured when he’d read an encyclopedia article on wolves, even though the article had quite gruesome details in it.

Feelings and Autism #AtoZChallenge

Welcome to day six of the A to Z Challenge, in which I focus on autism. Sorry for being a bit late – I have been quite tired lately again.

As I said yesterday, today I will focus on autistic people’s experience and expression of feelings. It is a common yet tragic myth that autistic people do not have feelings at all. Autistics, especially the ones who are very much in their own world or who seem very self-absorbed, are often thought of as not having emotions. The truth is, everyone experiences emotions, we just experience them different from non-autistic people.

An example is the fact that I did not feel particularly sad at any of my grandparents’ funerals. However, I did not have a particularly strong bond with any of them so did not naturally feel sad, and I indeed wasn’t aware of the social requirement of displaying emotion. By the time my maternal grandma died in 2007, I had rationally learned the appropriate emotional response, but none of my family members showed it so I felt a little confused.

I also sometimes will focus on a detail in a situation and respond emotionally to that. For example, when a fellow patient in the psychiatric hospital told us that he had been diagnosed with incurable cancer, I did rationally feel sad for him. However, I ended up laughing out loud when someone used a funny nickname for a nurse. This emotional tesponse to a detail in a situation rather than to the big picture, may be one reason autistic people are accused of lacking empathy.

I for one have very strong feelings, but I do not always identify them correctly. Until I was in my late teens, I used “good” and “bad” only when talking about how I felt. Even now, I mostly register primary emotions – anger, sadness, joy and fear -, and even confuse sadness and anger sometimes.

Some autistic people, like myself, feel very intense emotions. In some, these emotions might spiral out of control so that fear becomes panic and anger becomes rage. This is particularly true of autistic people with a condition called multiple complex developmental disorder. People with this condition also often have thought disorders. For example, they might make illogical leaps in thinking. I do not have this diagnosis, but it is very similar to the combination of autism and borderline personality disorder, which is my diagnosis. For this reason, I will illustrate this problem with a recent example from my own life.

At my husband’s grandfather’s funeral, I did not display much emotion as I didn’t feel particularly attached to the deceased. I must say here that, in the days prior to the funeral, I had turned my phone off for an unrelated reason. In the night following the funeral, the emotions of the funeral caught up with me and I began to think that my father had died and I hadn’t heard my mother’s call about it because my phone had been turned off. At first, this was just a scenario playing in my head, but I rapidly grew very upset at this scenario and had to take some emergency tranquilizer. I also became very angry, which shows the confusion between anger and sadness I mentioned earlier.

In short, autistic people do have emotions, some very intense ones. They however may have trouble identifying their own emotions and expressing them appropriately.