Monthly Archives: August 2014

How I Want to Be Remembered

I’ve neglected the recovery challenge for about a week, because I had so many other things to do and so many other things that inspired me to write. I just wrote but then deleted a post for word of the week on memories, and this reminded me to pick off again. Day five of the recovery challenge, after all, asks how you want to be remembered

I’ve been one to always be conscious of the fact that life isn’t endless. IN 2008, I experienced a period where I was convinced I wouldn’t make it to the end of the year. I have some hypochondriac tendencies, and at the time I was afraid that what later turned out to be a benign condition (eithe rirritable bowel syndrome or pelvic floor dysfunction), was cancer. I wasn’t one to go to the doctor easily, so it wasn’t till four years later that I got checked out.

I have also had suicidal ideation on more occasions than I’d like to admit. I never made a serious suicide attempt, but I did seriously consider it.

Nonjetheless, during these times of realizing how short and final life is, I never really thought about my legacy. Usually, I was either too depressed to think about anything beyond my death, or I didn’t really see death as the end. I don’t know how to explain that latter one. I also often didn’t feel that people would remember me if I died.

When I look deep inside of me, I want people to remember me when I’m gone, but how I want to be remembered, is a hard one. I don’t want people to be sad that I’m gone, because, well, who wishes sadness upon others? And yet in another way, I want people to be sad that they lost me, because I want to be cherished.

I remember when I was at my worst with respect to suicidality, I got some comments from people saying I should not kill myself because my family would have to pay for and arrange the funeral. That reminded me that, as I was at the time, I’d be remembered as a burden. I didn’t have my husband back then, so now even though the same people might still remember me as a burden, I might be remembered lovingly by someone.

I can say, as I did above, how I don’t want to be remembered. It is much harder to say how I do want people to remember me. This ties in with the question about things you like about yourself that was asked earlier in the challenge. For example, I want people to remember me as a creative person. Then again, it creeps me out to have my blog (assuming blogs still exist by the time I die) stay online beyond my death. I honestly don’t know whether I want to be remembered as an intelligent or stubborn person, although these are more likely qualities for people to describe me by than my creativity.

More importantly though than any qualities people remember of me, I want people to remember they liked me, and that is still very hard. I don’t have any friends and don’t have a particularly good relationship with my family. Also, I have a hard time believing even my husband likes me, so yeah, it’s hard to fathom that anyone would hold me in loving memory when I’m gone. At least I can work towards being a likeable person.

Life After High School

Through a blogging group, I came across this post about the author’s expectations of life after high school when she was still in school. I wrote an elaborate comment but, when I saw the author was actually writing from a prompt, I thought I’d do the same. I’ve shared some of this before, but repetition can be therapeutic, or something.

I went to my city’s grammar school. For Americans: I don’t know if such a thing exists in the U.S., but it is an academically high-level secondary school with a strong focus on ancient Greek and Roman heritage. By the time I was twelve and visiting it for the first time, I was already echoing the benefits of a grammar school to a regular high school from my parents. Not that either of my parents had attended grammar school – my paternal grandfather was the only family member I know who had. I was already echoing the fact that I’d go to university at age nine, so yeah. Not that any of my family members had a graduate degree, but well.

I was terribly ambitious for the first two years of grammar school. By my third year, I fell into something pretty close to depression and didn’t bother with my schoolwork. My fourth, fifth and sixth years were okay. As I’ve said before, I dreamt of going to university to major in American studies and go to the United States for a year (and never return, because obviously I’d easily get a Green Card…yeah, right).

Other than that I’d excel academically, I didn’t have any real expectations for college or of life on my own. I read a fictional book in my third year of grammar school about a blind man who went to college and lived on the eighteenth floor of a student accommodation. I was a wannabe fiction writer at the time and attempted my own version of the eighteenth-floor book. In it, the female main character was as depressed as I was at the time. The only difference between her and me was that she drowned her sorrows in alcohol while I used food. Student life was lonely, depressing and confusing.

And that’s exaclty how it turned out, except for the alcohol. I lived on my own for exactly three months and then I crashed. I had to be hospitalized with what was then called an adjustment disorder – an inadequate, disabling reaction to stress. Seven years later, I still reside in a psychiatric institution, now with several mental health and developmental disability diagnoses.

Sometimes, but that was mostly during late elementarys chool, the thought of institutionalization crossed my mind. I am blind and was attending a school for the visually impaired. The school psychologist recommended I become a residential student there when I was in fifth grade, and my parents fought tooth and nail to keep me home. By the time I was eleven, I knew I had to avoid instittutions like the plague. Ten years later I checked myself into one.

Mama’s Losin’ It

Memories of Summer: Traveling While Blind

I haven’t participated in #theprompt in many weeks, but this week’s prompt appealed to me. It is “memories of summer”. My husband and I are currently planning our vacation for this year, which will be in September, and we’ve run into some problems finding things to do that I actually enjoy.

When I still had some vision, I enjoyed camping out, although I probably didn’t enjoy it as much as I remember. I liked going to the beach. My family used to go to Vlieland, one of the Dutch Wadden Islands. Up until I was around eight, I liked it there. I was in fact sad that, from my age nine on, we skipped a few years. That could just be my insistence on sameness though.

When we went back to Vlieland when I was twelve, I had a pretty horrible time and so did my family due to my almost daily meltdowns. I had pretty much lost my use of vision but still clung to what sight I did have. As a consequence, I was extremely dependent on my sister. We went back the next year and it was even worse. I think this may be one reason my parents stopped taking us on vacation after that year except for a trip to Berlin in 2002.

In 2000, I went to a summer camp in Russia organized by the Janusz Korczak Foundation. It was one big disaster. Formally, it was for both blind and sighted youth, but I was the only blind participant in the Dutch group. I was also the youngest Dutch participant at fourteen. I was pretty dependent. The other participants consequently treated me like a chore, and I reacted to it with frustration and tantrums. I liked some of the Russian staff, but the Dutch staff and participants saw me as a pain in the butt. Probably the only reason I applied to go to the same camp again the next year, was that I wanted to fit in somehow. The Dutch participants who had gone with me the previous year were consulted, in line with the Korczak philosophy of having children be judges over each other, and I was turned down.

In 2002, I discovered the International Camp on Communication and Computers (ICC), a computers and technology camp for blind students. I applied to go there and, even though I was honest about my experience in Russia, I was accepted. I went to England in 2002 and to Switzerland in 2003. Particularly my experience in 2002 was interesting and in a way it helped me accept my blindness, along with some other experiences I had that summer. Unfortunately, most such camps are for children and youth only.

I haven’t particularly enjoyed visiting cities. I went to Paris with my grandma in 2001 and, as I said, to Berlin with my family in 2002. While the experience in Paris was okay, I was often very frustrated in Berlin. This isn’t necessarily a blindness thing. I just didn’t like the unpredictability of not having a clue in the morning what we were going to do during the day. I also didn’t really like sightseeing, because, well, there’s just not much I can see.

This is a problem when planning my upcoming vacation. With my husband, I’ve been to Luxembourg, Germany and Switzerlnd so far. None of the experiences were particularly good, but they weren’t bad either. I liked going for walks in nature, but the surface couldn’t be too rough or I’d fall over. I liked trips where it was clear what we’d be doing, such as going on a train into the mountains. In the evenings, I was usually bored.

One of the positive things, hopefully, about the upcoming trip, is that I’ve decided I’m taking my computer. I’m not planning on staring at the screen all day, but at least this will hopefully cure some of the boredom I experienced during the evenings.


Mental Illness and Causing Emotional Harm

On day four of the recovery challenge, we’re supposed to honestly say whether we have emotionally harmed anyone (besides ourselves) with our addiction/disorder. This is a hard one for me, because with respect to my eating disorder, my answer would be “No”. That doesn’t mean I’ve not harmed people emotionally because of my mental health problems.

Generally speaking, it is not cool to admit you’ve harmed others because of your mental illness. Then again, a lot of family members of the mentally ill do consider being victimized to abuse by the mentally ill person a regular consequence of mental illness. Why is it that people with mental illness don’t want to admit that they can do harm with their disorder? Probably it’s because we don’t want to be seen as bad people, and actually many of us have experienced abuse ourselves. It seems pretty much impossible to find someone who will admit they’ve been abused and yet they are harming others themselves. There is a forum on iSurvive for abuse survivors who abuse others, but that’s about it. I understand it is hard for victims to admit they cause harm to others themselves, but you have to be completely honest about your own actions in order to heal.

I have caused emotional harm to others because of my mental health conditions in several ways. The first is engaging in the addictive behavior in front of others. I have never binged in front of my husband or parents, but I have self-harmed in front of them.

Then there is the emotional unavailability because of the addiction/disorder. I remember one day my mother wanted to talk to me and I ignored her and started eating candy. I also believe that I may not be as available to my husband as I could be. I don’t know whether this is due to my eating disorder – as I said, I don’t binge in front of him, but food is on my mind often. It also could be my general self-centeredness which may or may not be due to any of my mental health conditions.

Then there is the anger issue. This is not caused by my eating disorder or self-harm, but more often the other way around. Both my borderline personality disorder and my autism though have caused me to act out towards others. This is the worst way in which I’ve harmed people emotionally. Except during my teens according to my mother, I haven’t been physically violent, but I have been verbally aggressive often. I can’t be sure that the urge to overeat has never contributed to this behavior. IN fact, usually at least compulsive or rigid behavior has. I mean, if I’ve gotten it in my head that we’re going to do X, the idea of doing Y often sets me off. It is possible that X more often than would be considered normal involves food.

The thing is, mental health problems make people emotionally hurt others. They also are common in people who have been the victims of emotional or other forms of abuse. This is why the cycle of abuse usually doesn’t end with one victim. And it has to end. If you’re suffering with an addiction/disorder, admit that it causes harm to others too. That doesn’t make your own traumatic experiences not valid.

Three Things I Like About Myself

Day three of the recovery challenge is a hard one, because it is about listing three things you like about yourself. I can think of things I maybe, in a way, sort of, kind of like about myself, but most come with a huge “but”. Then again, this post is good for examining why I can’t really like positive characteristics of mine.

I had to do this once before during counseling at blindness rheab, and I also had to ask my parents and sister to name three qualities about me. They didn’t need to be positive per se, but it would be nice if they were. The first thing my father came up with was my intelligence, and I bet my mother had a hard time thinking of something other than that to come up with first. I realize I am intelligent, and in a way, I like it. I used to like being seen as a “walking encyclopedia”. At family get-togethers, I was usually popular for my calendar calculation abilities and knowledge of politics. For clarity’s sake: I actually know the mechanism behind calendar calculation and don’t have the huge memory that savants do have, so I’m generally a lot slower than savant people. Now, I still feel good when I debate a topic I know a lot about and I can show my knowledge.

The reason intelligence has a bad connotation to me is because of the expectations that go with it. Because I am intelligent, I am supposed to function well in a lot of other areas. This is not true – conditions like autism, which I have, have little to do with intelligence and can affect intelligent people significantly. But this myth has still been perpetuated throughout my life.

Another quality I mentioned to the blindness rehabilitation psychologist is my strong-willedness. If I want something, I’m determined to get my way. This may be annoying to others, but most people appreciate it in me. I also don’t usually truly give up easily. I may say that I will give up, but in the edn, I persevere.

Then there is the one quality I truly like about myself: my creativity. I don’t necessarily mean that I make good crafts, although I’m quite happy with many recent projects. I also mean my writing skill and my generally open-minded thinking style. “Openness” is the one thing on the five-factor personality test that I score high on (except for “neuroticism”, but I mean the positive qualities), although I must say I am pretty conscientious too.

To end this post, I’m stealing an idea from Confessions of a Single Parent Pessimist and listing three things I did well this week:

  1. Have not binged during the week and have not self-harmed in seven weeks.

  2. Kept my temper in check.

  3. Wrote a lot of blog posts that I like.

Ways to Help Me Recover From Binge Eating

Thanks for all the supportive comments on my previous post. I had to cancel my dietician’s appointment yesterday because my husband would be visitng me straight out of work. Today, I celebrate one week free from binge eating. I did buy candy once this week, but managed to spread eating it out. Saw on Thursday at the dentist’s office that bingeing is better for your teeth than eating the same amount of candy spread out over a whole day, but with the speed at which I usually binge eat, I can’t imagine this being healthy for the rest of your body.

Day two of the recovery challenge asks you to list what you have done to help yourself in your recovery. Since I’m not really in recovery at this point, I’m listing the strategies recommended to me. The hard part with overeating is that you can’t just avoid the substance of abuse (in this case food) entirely, as with alcohol or drugs. You therefore need to also know what is normal eating, and that has been a challenge for me.

Now candy isn’t necessary for your body. The first recommendation I got from my dietician is therefore really teh drug abuse recovery approach applied to candy: avoiding it altogether. As I said above, this has not been successful with me – even in a week that was free from bingeing, I did eat candy. I do think I may want to try this again, however, because, you know, I just don’t really know how to moderate my eating when I have candy within reach. I get three healthy meals a day and usually snacks too provided by the institution, so yeah.

Then I tried buying candy only at one set time during the week. This was my most recent agreement with my dietician, and I’ve so far not been too successful. Yes, I’ve had weeks where I bought candy only once, but I’ve also had weeks where I bought it more often.

Related to the previous one is the idea of having set snack times during the day. I would have to be really strict with myself as to extinguish the need for instant gratification. For example, I might set 3:00 PM to 3:15 PM as snack time. Suppose I get the urge to binge at 2:00 PM. Then I would have to delay the need for gratification for an hour. My dietician said it didn’t matter what I ate as long as I didn’t go over the fifteen-minute limit. The thing is, I can eat a large bag of candies in such a timeframe.

Another possible approach is buying alternative comfort foods that are healthier. For example, bingeing on carrots won’t hurt. My dietician at one point advised against this because it’d mean food would still be on my mind all the time, but this has seemed to be the most successful approach.

of course, there are other ways to deal with the stress that causes an urge to binge. Exercise, talking it out, mindfulness, etc. I have not yet found one that truly helps, but I’m still searching. If you have any ideas, feel free to share.

The last approach, something I most recently learned of, is approaching the urge to binge as an animalistic impulse rather than as a part of yourself or as fulfilling any true need. I have not really investigated this approach, but it seems to involve learning to recognize your “animal brain” and learning to extinguish its instinct-driven responses. Seems interesting, as my mind does seem to think I’m going to starve if I don’t eat right now. That’s not literally what I think, but it does come down to it.

Letter to My Eating Disorder

Tomorrow, I’m having a dietician’s appointment. I have probably gained a lot of weight and at the very least my eating habits have been crap. I am feeling that focusing on weight loss doesn’t always help me. I’m not even sure I’m motivated to lose weight, but I am definitely motivated to stop bingeing. Or am I? In order to motivate myself, or examine why I am or am not motivated for recovery, I looked up eating disorder recovery challenges. I’m not active on Tumblr, where most such challenges are hosted, but I thought I could do one on my blog.

For day one of this challenge, you are asked to write a letter to your addiction or disorder. Here goes.

Dear binge eating,

You have been with me since early adolescence or before. You crept into my life slowly. At age fourteen, I read an article in a teenage magazien about eating disorders, and, like so many teen girls, I was touched. I didn’t want an eating disorder, but I was struggling. I did want a way to express my struggle. Little did I know that you had already entered my life.

The article was mostly about anorexia. I admired these young women, in a way, because they had perseverance. In another way, I felt that if I had an eating disorder, maybe then people would see I struggled. I started counting calories and using a food diary, but I never stopped eating. In fact, I overate. You were already in my life. I didn’t realize you were an eating disorder just the same.

For a while in adolescence, and then again for a while in my mid-twenties, I had bulimic tendencies. These gave me a reason to believe I was really struggling. I took you seriously, but wasn’t really motivated to let go of you. I was at a healthy weight, but because I purged, I had an eating disorder. I joined Proud2Bme, a Dutch eating disorder recovery site. Not that I really wanted to recover. In fact, I at one poitn joined a pro-ana site. I was already ovrweight by this point.

I stopped purging in 2012, and from then on, I was “in recovery”. I didn’t like this point, because I was still struggling, and I still had a need to feel that my pain was real. I don’t mean this, for clarity’s sake, towards others. I hardly ever disclosed that I had purged when I still did. But to myself, purging had to be in my life to justify my pain.

Meanwhile, you took over more and more of my life. I didn’t realize you were a problem until I reached obesity. At that point, I realized you were in my life, and you were serious. This wasn’t till about half a year ago.

You are strong. I think of you on a daily basis. Sometimes, I cling to you, and sometimes, I curse at you. You have caused me to gain over 30 pounds since 2011. Yet you’ve been in my life much longer, I know. In middle and high school, I would buy a sausage roll and bag of candies every single day. I remember one day in seventh grade, buying five candy bars. My classmates told me I was being outrageous, but I ate them all anyway. I didn’t really know what was normal. Now I do.

I am not sure at this point I want to get rid of you. You fulfill my need to do something about my strong, unstable emotions. You fulfill a need for instant gratification that I’ve always had. Yet if I don’t get rid of you, this is making you worse, and making the need for instant gratification worse by reinforcing it. But if I do get rid of you, will the need go away, or will you just be replaced with some other addiction? I will have to find this out, but I do want to take on the challenge and try to get rid of you.



The Righteous Live by Faith

Today, I’ve been feeling a desire to invest in my faith. I hope this is not just for today, but for many days to come, but for now, I’ll just make use of it. I usually invest in my faith by prayer, reading the Bible and reflecting on it. Therefore, I decided to look at some Bible passages and write about one that appeals to me.

“For in the gospel the righteousness of God is revealed – a righteousness that is by faith from first to last, just as it is written: ‘The righteous will live by faith.'” (Romans 1:17 NIV)

The first thing I came across when looking for devotionals on this verse, was Ron Moore’s devotional with the provocative title “Hello, My Name Is… God”. In it, Moore starts by explaining righteousness. To be righteous means to be blameless, and no human being can be blamelss. The good news is that God through Jesus cleanses us of our blame. Amazing, huh? In a way, it is, but it sits a bit uneasy with me that Christians may view themselves as above and beyond blame, as if they can do as they please as long as they have faith.

Moore explains that we who believe in Jesus are accredited with blamelessness. This connotes a kind of responsibility. As believers, we need to make a conscious effort, with the help of God, to remain righteous.

Here is where the second part of this passage comes in: living by faith. I mean, I am generally a pretty well-behaved person, but I am not perfect. Nobody is perfect. It is through our faith in God that we become righteous.

Living by faith is an area in which I could definitely improve. I don’t read the Bible nearly everyday, haven’t been to church in months, and struggle to keep my language in check – even as I have to write this blog post for the second time all over again because my computer decided to act up. Faith is not somethign you do every once in a while when it suits you. It is something you focus on on a continuing basis. I pray that God helps me keep focused on Him.

Linking up with Saturday Soiree.

Pain Doesn’t Have to Be Visible to Be Real

“I always hated when my scars started to fade, because as long as I could still see them, I knew why I was hurting.” – Jodi Picoult, Handle with Care

I am a self-injurer. Have been since childhood. Part of the reason has always been to feel something other than emptiness, loneliness, or emotional pain. However, part of the reason has also always been to make my pain be visible. Not even necessarily to others, but to myself.

It feels kind of odd to admit this. After all, wanting to express pain is seen as overreacting, attention-seeking. We are taught to hide and numb out our pain.

I once read a Dutch book on psychosis which started out by eplaining that today’s psychiatry is aimed at ignoring people’s inner experiences, or altering them with drugs. According to the author, we live in a kind of brave new world, where everything is aimed at individual and social stability. Take some soma, baby! And I can relate, having resided in a psychiatric institution for almosot seven years. When I feel stressed, the first response from the nurses is usually to ask if I need a tranquilizer. In fact, when I resided on the locked ward, I’d call oxazepam my “shut up pill”, because nurses would tell me to take it whenever something irritated me.

Please note that psychiatric drugs have some place in treatment of severe mental illness. I take various medications for anxiety, irritability and emotional instability. Sometimes though, I’ve wanted to quit my medicaiton because it numbs me out.

Psychiatric drugs aside, many people are taught that to feel pain is to be weak, and to express it is to be even weaker. Most survivors of trauma feel guilt for the pain they experience, because, you know, others have it worse, it wasn’t that bad after all, you name it. I am still working on admitting that what I suffered was real, and the pain I feel is real as well. Just today, I saw another quote. Something along the lines of: “Your struggles are valid even if others are struggling more.”

Another common misconception is that physical pain is somehow more real than emotional pain. There is a huge stigma associated with mental illness, more so than with physical illness (I’m not saying there’s no stigma associated with physical illness). People all too often think that we can “just get over it” when we’re experiencing emotional turmoil, whereas if there’s something physically or at least visibly wrong with us, it’s real. I am not immune to this, and in my case, this idea perpetuates symptoms such as disordered eating and self-injury.

If you want to get over emotional pain, the first step is admitting it is there and that it is real whether it is associated with visible scars or not. You should not have to convert emotional pain into physical wounds to be taken seriously. Expressing pain in a healthy manner should be allowed, encouraged even, and should be enough to deserve support.

Linking up with Inspire Me Monday and Motivation Monday.

Week of August 11 to 17, 2014 #Mumslist

This week, Mums’ List is being hosted by Aby of You Baby Me Mummy because Hannah of Mums’ Days is on holiday. I haven’t reflected back on the week yet, so this is the perfect time to do so.

Real Life

  • Haven’t been too crafty this week. Finished a card for my mother. It was about time, because it’s an extremely late thank-you card for my birthday presents. I forgot to scan it before I put it in an envelope, so no picture, sorry. Other than that, I have only just started working on the Christmas card I said I’d make this week.

  • Received my art doll for a mixed media swap I’m in. Haven’t even started working on the one for my swap partner. The deadline isn’t until October 1.

  • Ate out twice this wek. Once, on Thursday, I took my husband to the local Chinese restaurant. I loved my gon bao chicken. On Friday, we ate out while we were shopping for jeans at a nearby wholesale store. Thankfully, I still fit in the same size I had last year – which is still three sizes above the size I always had, but well.

  • Had a horrible week re my eating habits. Binged on winegums on Friday so badly that I was sick all day yesterday. Got fries today anyway. Had binge eating episodes on two other days this week.

  • Did go to the gym on Thursday.

  • Both my computers are still working, but now my braille display is acting up.

  • Have been reading Angels at Our Table edited by Ann Breen. It’s a book of stories from families with Williams Syndrome children.

Blogging / Social Media

  • Started over with my Facebook page – again. This time, I was actually planning to stick to it, but since I hardly do photos and since WP won’t let me share posts to both my page and my profile, I really don’t know. I could seriously use some advice on what’s the point of a Facebook page and how to use it.

  • Did write not just one but two original blog posts.

  • New blog discovery: Edspire.

  • Most inspiring read: Emma’s guest post on fetal valproate syndrome for Victoria Welton’s blog. This is something I want to learn more about.

I don’t really have goals for the upcoming week, other than finally kicking binge eating’s arse. I have a dietician’s appointment on Friday and a therapy appointment on Tuesday. Will discuss the binge eating issue with my therapist – the dietician already knows.