31 Days of Writing for Growth Landing Page #Write31Days

I started this blog last July with the aim of writing more frequently, as well as more freely. I wanted this blog to be a diary-style blog while I maintained my other blog for more “blog-worthy”, less personal content. That last part didn’t happen – I practically abandoned my other blog. The first part though was a relative success. I didn’t write as often over the past two weeks as I’d done the first week of my blogging adventure. However, I did write nearly everyday.

I tried to participate in #Write31Days several times before. In 2015, I did it on my other blog on mental health. In 2017, I tried doing it on autism, but landed in hospital after an overdose on October 4 before I’d published my post. The fact that I would no longer be able to fulfill the challenge requirements discouraged me and caused me to let go of writing almost entirely for the rest of the month.

This year, I’m starting the challenge back up. My theme for this year will be 31 Days of Writing for Growth. I will write about my own personal journey of healing and self-improvement. I will not limit myself to a specific aspect of personal growth. I will most likely use some prompts from the various journal writing prompt collections I have in book or other forms. I didn’t prewrite my posts, so I’ll have to go with what inspires me each day.

This is the landing page for my #Write31Days posts. Here, I’ll be linking my posts each day so they’re within easy reach for those wanting to refer back to them.

To my fellow #Write31Days participants as well as to my readers, enjoy!

My Full Potential

This week’s Five Minute Friday prompt is “potential”. That definitely has me thinking. Kate Motaung, the woman behind the FMF challenge, wrote about the potential in a nine-month-old child. The potential to become anything. I loved this perspectve.

I am 32-years-old. Does this mean I can no longer grow? Not at all! My full potential is still waiting for me to unpack the gift that it is.

The prompt had me thinking. Often, one’s full potential is determined in terms fo success, of how much money you make, how many college degrees you’ve got, etc. At least it’s in my case. As such, I still do not feel that I’ve reached my full potential.

In other respects though, I have. I have for the most part let go of the limiting power of thhis “full potential” rhetoric that values success over happiness. I would very much like to grow, but not when it’s enforced by other people’s seemingly “objective” standards of what my potential should be.

This, as always, took me more than five minutes to write. I’m not that fast of a writer yet. Maybe I’ll be able to reach that goal at some point. Maybe not. We’ll see.

Belated Weekly Gratitude List (September 29, 2018) #TToT

I didn’t participate in #TToT last week. Yesterday, I was going to write just when I realized it was time to go off to bed, since my husband would need to get up at 5AM this morning. I for this reason didn’t write my #TToT post then. I’m feeling slightly less depressed than I was over the past couple of weeks, but my depression is still there. I am therefore going to attempt to write a list of things I’m grateful for again.

1. Exercise. I had a pretty hard time exercsing regularly last week. This week was better. I managed around 3 1/2 hours of exercise this past week according to my Fitbit and reached my five-day goal. It does count walking as exercise, but I also managed to go on the elliptical twice.

2. Swimming. Last Tuesday, I went swimming at day activities again. I hadn’t been going the previous time two weeks ago, because I had a cold then. This time, there was no extra staff for me. The volunteer watching me however complimented me on my independence. By the way, my Fitbit is water-proof so it did record my swimming activity.

3. An afternoon at my in-laws. On Tuesday, I didn’t have support after day activities, so I asked whether I could stay at my in-laws. My mother-in-law picked me up at 3PM and I was home again by 7:30.

4. Possibly extending my day activities hours. This we discussed on Thursday, when my support coordinator and assigned day activities staff came to my home. Hopefully come October 9, I’ll stay at day activities Tuesday afternoons. I hope to eventually be able to go four full days, but that has yet to be determined.

5. A good session with my nurse practitioner. We did continue to work the DBT manual, but I felt more able to contribute my own thoughts than I was before. Before, it felt like he was just reading the manual to me and I was unable to make sense of it.

6. Buying nice things at the wholesale store today. My mother-in-law has a customer card for them and I went with her. I got a pair of warm slippers, a night gown, two bras and a chocolate bar.

7. Browsing Amazon for Kindle books. It seems as though Adobe Digital Editions eventually decided no longer to work with at least my rather outdated version of the JAWS screen reader. That’s sad, as I have a lot of DRM-proteced EPUB books in there. However, it gave me a reason to browse the Amazon Kindle store too. I haven’t bought any books, since I still haven’t finished those in my library. Still, browsing the store is already a lot of fun.

8. Being at least a little inspired to write. I didn’t write everyday this past month. Not nearly. However, since having this blog, I never fell into as much of a rut as I did with my other blog regularly. That is, there haven’t been two consecutive days that I haven’t written at all since starting this blog. I should be proud of this! This really gives me hope. I will be participating in #Write31Days in October and am positive I will finish the challenge this year. Yesterday, a ton of ideas to write about started popping up into my mind again.

I notice I’m having a little bit of a hard time finding things to be thankful for this week. I wanted to mention horseback riding or the long walk on Monday, but those are on my list almost every week. I felt this’d get boring. However, I mention them here anyway to make a point out of being grateful for my everyday experiences.

CP Day

Yesterday, I heard about an event on November 3 that I was immediately interested in. It’s the Dutch national CP day organized by BOSK, the country’s charity for people with physical disabilities.

For those not aware, CP is an abbreviation of cerebral palsy. Cerebral palsy is a movement disorder caused by brain damage sustained in utero, during birth or in a child’s first year of life. In my own case, I had a brain bleed shortly after birth.

The thing is though, I was never told that I have CP. My parents just told me I’m clumsy. I did get adaptations early in life, such as a large tricycle. I also had lots of physical therapy. When I was around nine though, my parent discontinued my specialist appointments. Even when I developed scoliosis in adolescence, they didn’t tell me. Scoliosis is a common consequence of hemiplegic (affecting one side of the body only) CP.

Last year, I asked my GP about it and was told I have acquired brain injury. Usually though, when someone acquires their brain injury in the first year of life, it doesn’t “count” as ABI. Instead, diagnoses are then made based on symptoms, such as CP in the case of movement difficulties.

CP is classified in five levels of severity. Obviously, since I don’t even know whether I was diagnosed with CP as a child, I’m not sure of my level either. I would have to guess I’m probably level 1 or 2, which are the mildest levels.

CP is not progressive and yet in some ways, it is. The brain damage that causes it doesn’t get worse, but adults can experience worsening pain, muscle stiffness and symptoms related to overuse and overcompensation.

On the CP event, there’ll be various workshops for adults with CP and parents of CP children. The morning workshop that most appealed to me, is about overload. I’d love to explore this from an a CP perspective rather than an autism perspective.

In the afternoon, the workshop I’m wanting to attend is on nutrition. A dietitian will speak about nutritional guidelines for people with CP. While CP affects movement in the limbs mostly, it can also impact on one’s gastrointestinal tract, because after all these are muscles too. I suffer with both constipation and reflux, which will be discussed.

Obviously, I still feel a little self-conscious about going due to my uncertainty about my diagnosis. Because I am sure I had a brain bleed in infancy, my main concern in thsi respect is that I’m not “bad enough”. My parents at one point tried to get me into a school for the physically impaired and were told (or so ‘ve heard) that I wasn’t disabled enough. Now of course I don’t mind not being that disabled, but then of course I shouldn’t be going to an event like this.

Seven Things I Wish My Unsupportive Parents Understood About Me

I just read BPD Bella’s post about ten things she wishes non-borderlines knew about her. I have only some BPD traits and couldn’t relate to everything she describes. However, this post inspired me to do my own list. I’m dedicating this list to my parents by sharing some things I wish they understood about me. For those who don’t know, my parents are particularly unsupportive of my disability experience.

1. I am not “just blind”. I know that many blind people like to minimize the impact of their disability, to prove that they’re competent adults, blindness and all. My mother at one point told me about one of my sister’s college friends, who is blind. She then remarked she wished every blind person had the same abilities. That’s not how it works. But guess what? Sighted people vary in their abilities and difficulties too.

2. My needs are valid. I wasn’t being “manipulative” when I threatened suicide in 2007 while living on my own. I was desperate. If I had really been able to cope, I would have. Similarly, I’m not being “manipulative” by trying to get into supported housing now. No, I’m not in a suicidal crisis on a daily basis anymore, like I was in 2007. However, I want to prevent it from getting that far.

3. If you want me to have a skill, teach me. This is too late, since my parents should’ve gotten this message when I was young. They expected me to be able to live fully independently right out of high school in 2005, though I didn’t have most daily living skills. I appreciate how hard it was for them to teach me growing up, but that’s no excuse to drop the ball.

4. A family is not a business. One of the reasons my parents didn’t teach me independence, was that it got in the way of them running their family efficiently. That’s not an excuse.

5. Not everything is my IQ. My parents are convinced that I am such a genius intellectually that I should be able to use it to overome all of my difficulties (except maybe my social ineptness). Also, this genius IQ enables me to manipulate the world into believing what I want them to believe, which is apparently that I’m weak and dependent and need lots of care. (I am not trying to say needing lots of care makes a person weak and dependent.) No. I would’ve graduated university and gotten a job if I could.

6. Depression is real. Some professionals believe that my childhood irritability stems from depression. I’m not sure that’s entirely true, but it’s possible. I definitely suffer from depression on and off in adulthood. My parents instead say it’s an attemtp on my part to make other people feel miserable, presumably because I refuse to accept the fact that I’m blind. Well, going blind can be traumatic and is not something you “just need to accept”.
Besides, depression is an illness, not a weakness or choice. When depressed, I do make other people feel miserable, but it’s not because I want to.

7. I am an adult, I make my own life choices. In 2006, my parents threatened to abandon me over my wanting to delay university one year. In 2008, they showed up at my hospital ward to take me home with them, because they didn’t agree with the social worker’s plan for my follow-up care. I’m pretty sure that, if I go into supported housing, they’ll try to guilt trip me into not doing it. I couldn’t handle that in 2006. I could in 2008. I am pretty sure that, should they decide to abandon me for good this time, I’ll be able to handle it.

I see this list sounds rather accusatory towards my parents. It is. I don’t even intend for my parents to read it. I know that I’m past setting things straight with them. They won’t change. Besides, my childhood and early adulthood won’t change. I can change to an extent, but I doubt this will lead me closer to my parents. I don’t care.

Share Your World-Revisited (September 24, 2018)

I am still not very motivated to write, even though a million thoughts are floating through my mind. To get something onto this blog for today anyway, I’m participating in SYW-R, as I affectionately call the revisited Share Your World hosted by Sparks. Here are this week’s question.

Last week I asked a question about favorite beverages and the overwhelming favorite was coffee. If you drink coffee, how do you like it best? Hot, cold, iced, with cream, with sugar or black as black? If you don’t drink coffee, how has that beverage impacted YOUR world?
I do drink coffee and have since I was about six-years-old. However, I still get a hideous grin on my face whenever I drink it, as if I think it’s disgusting. To be honest, I don’t really like it, but I guess I’m addicted. I prefer my coffee black.

In your opinion, what’s the greatest invention of our age?
The computer or smartphone. I am still not the type to want to be connected all the time. I used my landline more than my cellphone until I was in my early twenties sometime around 2008. I didn’t get my first smartphone till a little over a year ago. That being said, I do love my little iPhone SE. However, I must say I still use my nearly 4 1/2-year-old Acer laptop far more. I still use Windows 8.1 with classic shell so it looks like Windows 7. I’ve been wanting to buy a new laptop and start using Windows 10 for a year, but am still waiting for my health insurance to cover a new screen reader.

Global warming? Reality or myth?
Climate change is probably real and to be expected with how much we’ve polluted the Earth over the past two centuries. I’m not knowledgeable enough to understand in what direction scientists believe now that it’s headed though. To be honest, not having children of my own makes me a little careless about this whole thing.

Are you an explorer or more a home body?
Definite homebody! I hate traveling.

What were you grateful for this week?
My amazing support workers, nurse practitioner, in-laws and most importantly my husband.

Struggle #WotW

I want to write so bad, but I’m struggling. Struggling to get myself motivated for writing. Or for anything. Struggling to write coherent sentences. Struggling with my thoughts floating through my mind. Struggling with pretty major depression. I’ve been in survival mode just a bit too long. Now I’m ready to crash.

I am participating in Word of the Week (or #WotW) for the first time on this blog. My word for this week isn’t a shiny, happy one. It’s “struggle”.

This week was an eventful one, yet nothing really did happen. If that sounds like a contradiction, it’s because it is.

Early in the week, it became obvious to me that my depression wasn’t lifting like I’d hoped it would. I mean, I’d hoped that, once my support coordinator was back from vacation and I’d have home support three times a week again, I would feel better. I didn’t. I felt worse.

Thankfully, my support coordinator offered to come by on Tuesday for an extra hour of home support. I am so happy she did, for I didn’t know how else to make it through the day.

On Wednesday, my support worker came by in the afternoon. We ran some errands and I thought I’d do better that day. Not so. In the evenng, when it became apparent my husband wouldn’t be home till past 7PM, I had a meltdown.

On Thursday, I slept in till past noon and again lay in bed for a bit at 2PM. I could’ve been in bed all day, but my support coordinator would be here by 3PM. Thankfully, she was able to motivate me to go for a walk. That was when I decided to start the process of hopefully getting into supported housing. I don’t have my hopes up, of course.

I know that if the powers that be see this post and conclude from here that I’m just struggling with depression, they’ll not provide funding. After all, treatment precludes support. Besides, mental illness only qualifies you for temporary support. So I’m hoping the powers that be will see my needs beyond depression. I’m also blind and have a brain injury and autism, after all.

Interestingly, I had no problem convincing my psychiatric nurse practitioner that I do need 24-hour support. He was one of the first to ditch the dependent personality disorder label I’d been given by my last institution psychologist. As he said when I called him on Friday, I may be a little dependent, but that’s normal because, duh, I’m blind. I’m not sure that’s entirely true, in that to my knowledge most people who are “just blind” don’t need as much support as I do. However, I’m not “just blind”.

The Reading Residence

Leaving the Path Paved for Me

Today’s Finish the Sentence Friday is a stream-of-conscious writing exercise on the prompt of “leave”. I have not been inspired to write much lately, not even snippets that aren’t “blog-worthy” but that I could’ve published here anyway. Yet this prompt immediately turned on a lightbulb in my head.

Yesterday, I made the decision to schedule an appointment with the care consultant for the agency I receive home support and day activities from. We’re going to discuss my options regardign going into supported housing. There I said it and now I’m hoping my parents never read this blog.

Nothing has been decided yet, except for the appointment with the care consultant having been set for October 4. It isn’t certain that I can get funding for supported housing. I’m not getting my hopes up too high, as there are huge budget cuts to long-term care for people with lifelong disabilities, which is the path I want to go. I could also go the community support route, where I could go into supported housing for the mentally ill temporarily. That most likely wouldn’t be of much benefit, as it’s heavily focused on “rehabilitation”.

However, assuming I can get into supported housing one way or the other, this will mean I’m leaving my husband. Not as in divorce, as living together is not required to be married here in the Netherlands and my husband has said he doesn’t want to leave me. In fact, he supports me every step of the way.

It also, however, means leaving my passing-for-non-disabled self behind. It means leaving the path paved for me by my parents (and my last institution psychologist). I’ll be a huge disappointment to them. I have been thinking of how to break the news to my parents. Thankfully, I can wait with that until the point, should it come, where I’m actually moving.

Since I scheduled the appointment yesterday, I’ve been flooded with memories. I told my support staff at day activities and that got me talking about the time I lived independently in 2007. At the time, I considered getting into supported housing too, but my support coordinator said I couldn’t be in their supported housing with my challenging behavior. This may be the case with my current agency’s supported housing too. That’s one advantage of independent living. After all, no matter how much I struggle in independent living, my husband won’t kick me out for needing too much care.

What’s Holding Me Back to Write from the Heart?

I have not written much over the past few days. It isn’t because I didn’t want to. In fact, I’ve been wanting to write a lot, but couldn’t find the right venue. I mean, if I want to write for this blog, the content has to be “blog-worthy”. Not because that was my original intent with this blog, but because I’ve become (too) focused on my audience.

“Blog-worthy”, in this respect, means being at least 300 words long, being well-constructed and not being too personal. I mean, yes, I write a lot of very personal posts by soe more general bloggers’ standards, but I still wish I could express myself more freely.

In particular, I wish I felt okay for all of the alters to write using their own names. I originally intended this blog specifically for that purpose, but I feel like I might attract negative feedback if I do this. I mean, dissociation is not your everyday mental illness.

That then has me gotten looking for private journaling apps on the iPhone and PC. I spent most of this afternoon downloading, trying and then deleting at least a dozen apps. None meet my needs. Honestly, what I’m really looking for is something that looks like WordPress but is completely private. Yes, I know I could create a protected blog, but that still feels “kind-of-public” to me.

Then again, is it truly the fear of exposing my thoughts to the public that holds me back? Or is it my inner critic holding me back regardless? I mean, I noticed an alter – a newly-emergent one -, trying to write to an E-mail list a few days ago, but she kept saying that she cannot be her.

Of course, an E-mail list still has an audience, but this was a DID list, so all members are supportive of alters posting. And yet, I feel weird. What it all boils down to, I think, is that I want people to know my thoughts, but I want people to be supportive even more. Then again, how can I elicit support if I don’t share?

So I guess from now on, I’ll try to let go of my “blog-worthiness” rule and try to write from the heart. Of course, there are still aspects of my life that I cannot share, but I cannot share those at all.

What I’m Excited About for the Coming Week

Today, DM over at Pointless Overthinking asks what excites you about the future. This is a really timely question, in a kind of ironc way. You see, I was pretty badly depressed most of the day and found looking even an hour ahead hard. Now that I have gotten some more clarity of mind, I am going to make a list of things that excite me at least a little bit about the upcoming week.

1. My support coordinator coming over tomorrow. I texted her this afternoon to let her know I’m not feeling that well. She had just come back from vacation this morning, so I felt pretty guilty for having texted her, but the feeling of despair was stronger. At around 6PM, she called me back. She would originally only visit me on Thursday, but she offered to see if she could come tomorrow too. I said I’d much appreciate that. At 4PM, she’ll be here.

2. The good weather forecast. It’s said to be sunny and around 27 degrees Celsius here tomorrow.

3. Celebrating my seventh wedding anniversary on Wednesday. My husband already announced that he’s going to take pizza home after work then. I love pizza, particularly from American-style pizza chains like Domino’s and New York Pizza.

4. Horseback riding on Friday. Do I need to say more? Oh, I love Angie!

This isn’t all that much, but I’m still a little bit more cheerful now that I’ve written these things down. It isn’t that I’m magically no longer depressed. However, like gratitude for the things that happened in the past, excitement for things that are going to happen in the future, may help some.