Some Glimmers of Hope

Hi everyone. It’s once again been a week and a half since I last posted. This week and a half hasn’t been boring at all. In fact, it’s been filled with events that triggered all kinds of emotions in me.

Last week Saturday and again on Monday, I had some very difficult conversations with my assigned staff. She turned out not to mean things too badly, but just got very frustrated with my trouble understanding non-literal speech. We also once again ran in circles about this home being very different from the home I come from and my being used to the old home and never getting it like that here. I know, I don’t expect things to go precisely the same as they went there, but there’s something between the way I was treated at my old home and the very harsh way I’m treated here.

These conversations got me so frustrated that I started thinking I may need to get an independent client supporter to help me find another home. After all, moving to another home within my current care agency, isn’t an option.

Then on Wednesday, a staff told me about her plans for getting day activities rolled out at this home. I’m not sure I can participate in all of them, but some I can take part in. This staff also assured me that my assigned staff is completely on my side.

This also became clear when I had the meeting with the mediator, my assigned staff, the behavior specialist and my mother-in-law yesterday. My assigned staff admitted that some (most, in my experience) of her coworkers treat me just like they treat everyone else at this home. Apparently the harsh approach is what the others need, but I don’t (unless I for instance insult a staff member, which only happens during a severe meltdown, 99% of which can be prevented with the right support). We agreed that my signaling plan (for preventing and averting crises) will be revised, but the behavior specialist assured me that for the most part it can stay the same. After all, she said I haven’t become a different person since moving here. That felt validating.

I positively told the people attending that, since implementing my new day schedule, things have significantly improved. I also told them I realized this may be all I can expect of the staff, so I am (trying to be) all happy when it goes smoothly. However, when it doesn’t go smoothly – for example, when the staff are frequently late for my assigned support times or leave me alone beyond my assigned alone times more than occasionally -, I’m not happy. It gets worse when the staff justify their tardiness or leaving me alone beyond my assigned alone times with some comment about my not having (full-time) one-on-one. Their reasoning is that, since my one-on-one isn’t full-time, I essentially don’t have one-on-one at all and can just expect staff to pop in whenever they please. Their terminology is a bit screwed (I think I explained it in a previous post) and it irks me beyond belief. I know I don’t have full-time one-on-one and I don’t expect it, but I do have the day schedule for a reason.

Both the behavior specialist and my assigned staff validated my need for the day schedule and for staff to stick to it. I said I understand that a severely challenging situation among my fellow clients could be a factor preventing this, but the behavior specialist said this shouldn’t happen more than a few times a week. Currently, it’s usually at least once a day (and I obviously don’t mean the times my staff is running like five to ten minutes late for my support). My assigned staff actually went so far as to say the extra staff is there primarily for me. She is going to clarify this and some other things in a basic info sheet on me that all staff can read when starting their shift with me.

Altogether, the meeting gave me some glimmers of hope. It remains to be seen whether the staff actually do something with what came out of it. I do still have my worries about my support coordinator overriding all this once she returns from her time off. Then again, I am pretty sure that, if the behavior specialist actually means what she said, my support coordinator can’t really do that.

Joy in October and November

Hi everyone. I didn’t post an update on my word of the year last month, so I’m doing one now. My word is “JOY”. As usual, I’m linking up with the #WOTY Linky as well as Lisa’s One Word Linky. Here goes.

I honestly can’t remember the joy I was looking forward to experiencing next month at the end of September. I just had a look at the post I wrote then and I said then that I was hoping to enjoy real food, as the staff at my new care home cook. I wasn’t as high with anticipation as I now looking back thought I was, realistically saying I’d have a lot to get used to so was just hoping to enjoy some everyday pleasures. I didn’t specify what these included.

As regular readers of my blog will know, I indeed did and still do have a lot of getting used to do. In fact, I’m pretty sure I won’t ever truly adjust to the chaos that is the new care home. As a result, I didn’t experience much everyday joy over the past few months. I did for the most part enjoy the real food, but not as much as I’d have liked, as I wasn’t involved at all. I’m hoping to be able to contribute to thinking up the menu soon, but the staff usually receive ideas from the clients while they are in the communal room and the staff are in the adjacent office. Since I hardly ever join the other clients in the communal room and there’s no set time for the staff to think up the week’s menu so that I could then, it may be hard for me to participate, but I at least voiced my wish to do so once again.

Over the month of November, I did finally try my hand at crafting semi-regularly again. During October, I tried to as well, but there hardly was any time for the staff to help me so I struggled to find the opportunity. I managed to finish two polymer clay pieces during November, the latter of which unfortunately didn’t cure properly so it broke.

I also enjoyed two hour-long walks during October. During November, my mobility wasn’t as great, so I struggled even with 30-minute walks. I did eventually manage to take a couple of pictures during my walks though.

I also looked forward to enjoying visits from family in October. Indeed, my sister did visit me. So did my husband and mother-in-law, both regularly during the past two months. These visits are a welcome excuse to leave the care home.

Honestly, I am not sure whether, at the end of September, I somehow knew that the new care home wasn’t going to be what it was cracked up to be and that was the reason I didn’t specify the everyday pleasures I hoped to enjoy. Even if I knew then, the adjustment honestly is far more intense than I expected it to be. In truth, I’ve been pushed far beyond my limits and the experience has been mostly a nightmare.

Now, at the end of November, I am noticing some tiny glimmers of hope on the horizon that might mean the new care home could actually become less than nightmarish for me eventually. I am not sure these will mean anything in the coming month yet, so I will continue to focus on small joys. For example, I am hoping to enjoy crafting even if I can’t enjoy it nearly at the level I used to. I am also hoping to enjoy some walking, weather permitting, as well as continued regular visits from my husband and mother-in-law.

Hope and Faith

Today, Sadje’s Sunday Poser is about your rock in the storm. Who or what keeps you going when the times are tough?

For now, I could – should, maybe – easily say it’s my faith. I became a Christian last year and feel very much comforted knowing that, in the end, it’ll be okay. Not in this life, mind you. Jesus never promised us that there would not be any obstacles in this earthly life for us. Quite the opposite, in fact. We will still physically die and the Bible doesn’t promise Christians any easier end to their earthly life than non-believers. But in the end, in the Kingdom of God, it will be okay.

However, like I said, I didn’t become a believer until last year. I did kind of believe in “something” for many years, but that didn’t quite amount to much. So what kept me going until I started following Christ?

I guess the answer is as simple as the one above, and somewhat related too: hope. I always kept hope alive that, in the end, things would be okay. Even in the darkest depths of my suicidal crisis in 2007, there must’ve been a reason I in fact called my support worker to say goodbye rather than just killing myself without informing anyone. I felt, deep down, that there was still a way out of my darkness, even if I didn’t know what it was right at that moment.

At the time, my rescuers were the crisis service people in my parents’ city, who proposed I get admitted to the mental hospital.

That being said, I’ve never really felt that specific people are my rock in the storm. I mean, of course I appreciate my husband supporting me through everything. However, as unlikely as it is, I always have at the back of my mind the possibility that I’ll lose him at some point. That’s a residual effect of my having had very little stability in my life.

However, hope has always kept me going. It is interesting in this respect that most people who superficially know me, see me as a pessimist. I might look at things from a negative angle most of the time, but when it ultimately comes to it, I always have hope.

I Am Not a Calculation Mistake

Like I mentioned last week, I have been doing a Bible study plan on YouVersion called Hope Heals in the Midst of Suffering. I finished it yesterday and it was awesome. It was written by Katherine, a woman who survived a severe stroke shortly after becoming a mother, as well as her husband.

The plan follows Joseph’s story, the part of Genesis I had gotten stuck on in my Bible in a Year plan. I was glad to read it now.

At one point, Katherine shares that, about a year after her stroke, she is still unable to perform many basic functions. She is still in adult diapers, unable to eat, unable to even lift up her head. Her family is having Thanksgiving dinner with her son, then a toddler. As the family are playing with her son, she wonders if there was a mistake. Should she have died from her stroke?

It was at this point that a lightbulb went off in my head. I, too, have often wondered whether my life is a mistake. A calculation mistake, to be exact.

You see, I was born over three months premature. Officially, I was born at 26 weeks 4 days gestation. However, it is quite probable given the circumstances of my conception that my mother really wasn’t yet 26 weeks along. At the time, 26 weeks gestation was the cutoff for active, life-saving treatment in the NICU.

My parents weren’t even sure I should be treated actively. At one point, when I’d suffered a brain bleed, my father asked the neonatologist what he was doing with regards to my treatment. “We’re just keeping her alive,” he said. He (or his nurse) added that my father shouldn’t interfere in my treatment or he’d lose custody of me.

In 2004, when I was eighteen, this same doctor was quoted in a newspaper as saying that he sometimes meets preemies he’s kept alive back in his early days as a doctor, about whom he wonders: “What have we done?!” I at the time tried to reassure myself that he wouldn’t have meant me. Or would he? I, after all, am multiply-disabled and in long-term care.

The devotional in the Bible plan I was reading continued. Katherine at this point heard God clearly speak: “I am God. I do not make mistakes.”

This was what I needed to hear! I have tried to find my neonatologist on Google several times since that newspaper article. However, I don’t need his opinion. I have talked to my father about his views on my quality of life several times, but it hasn’t helped. I don’t need my father’s opinion either. God chose for me to be kept alive and that’s what matters.

Grace and Truth

Also joining Friendship Friday this week.

No Shame in Hope

I have been wanting to share more faith-based posts for a while, but didn’t quite know where to start. Today, I read the second weekly meditation in Hearing God Speak, an enneagram-based book of devotionals by Eve Annunziato. It is a meditation on suffering and the everlasting presence of God through it all.

“Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us.” (Romans 5:3-5 NIV)

I have known this passage for several years, even before I became a Christian. I have probably written about it before. After all, the fact that suffering produces perseverance, really resonates with me. As Annunziato points out, enneagram type fours like me feel most alive when we dwell on our feelings of pain and suffering.

As such, Annunziato challenges us to move towards praising God and seeing His presence in a new way. As such, the line about character and hope is more important to us Fours than the line about suffering producing perseverance.

I don’t think I’ve ever even seen Romans 5:5 and that verse in particular speaks to me now. I, after all, often fear joy and, by extension, hope. I am not yet sure what it is about joy I fear, but it might be a feeling of being less alive if I’m not suffering.

God’s love, however, has been poured out into my heart through the Holy Spirit. This is something to rejoice over, not to be ashamed of.

Indeed, it is interesting that Paul uses the word “shame” in this verse. I had no idea it is this emotion I often feel when I’m hopeful or optimistic, but it is.

I mean, even when I’m doing pretty well, I still say I’m doing “okay”. I remember a fellow patient in the mental hospital did the same and he did this so the staff wouldn’t think he was well enough to be discharged. I didn’t consciously do this, but on a subconscious level, I probably did. And still do, despite the fact that there’s no reason I’ll ever be kicked out of long-term care.

Honestly, there is nothing wrong with feeling hopeful, joyful and optimistic. In fact, it is what God is wanting for us in His honor. For this reason, Annunziato encourages us to praise Him even in the midst of our suffering! Because suffering produces perseverance; perseverance, character; and character, hope. And hope is nothing to be ashamed of, because through the Holy Spirit, God’s love has been poured out over us.

Linking up with Scripture Blessing, Let’s Have Coffee and Recharge Wednesday.

A Bottle of Hope

Today, I feel stuck in the twilight zone between good and bad. I’m not feeling as hopeless as I was two weeks ago, but I can’t quite say I’m feeling happy either. I really feel numb. This seems to be the story of my life anyhow. I’ve rarely felt truly happy. Sometimes, I feel dysregulated, desperate, out of control. Some other times, I feel a glimmer of joy. That rarely lasts long. This afternoon, I experienced such a glimmer of joy when making a necklace. Then this evening, I was in a small crisis again.

Still, I have this instinct to survive, to go on. I still keep this bottle of hope that I know at some level will always be available to me. Even at times when I’m most dysregulated, I haven’t intentionally taken steps that would really end my life. I still, deep down, have this will to continue.

Now if only I could put the energy I’m putting into merely keeping hope alive, into actually practising contentment. If only I could pick up that bottle of hope from the shelf, instead of letting it sit there until I (someday, probably never) find the perfect life circumstances. Keeping hope alive is one thing, but living a life of joy and contentment, is quite a bit further up there.

This post was written for Eugi’s Weekly Prompt and Michelle’s July 1 writing prompt

Fear Turned to Hope for the Second Coming of Christ

I have been making a daily habit of Bible reading for the past ten days and hope to continue this habit for a long time still. Sometimes, I squeeze in five minutes of reading just before bed, while on other days, I spend far more time reading the Word.

A few days ago, the daily story (something like a short sermon) on YouVersion was on Christ’s second coming.

“Therefore keep watch, because you do not know on what day your Lord will come. But understand this: If the owner of the house had known at what time of night the thief was coming, he would have kept watch and would not have let his house be broken into. So you also must be ready, because the Son of Man will come at an hour when you do not expect him.” (Matthew 24:42-44 NIV)

The speaker said that this Bible passage had always instilled fear in her as a child, because she didn’t want to be caught with her hand in the cookie jar when Jesus would return. I understand now even as an adult. Indeed, some strict pastors in the past used to go to cinemas and tell believers that they ought not watch worldly movies, for what if Christ returned now?

Then again, God knows us better than we know ourselves. We do not need to hide anything from Him. In fact, this is not possible. He also knows our hearts. This does mean we need to make sure we train our minds to think more helpful thoughts.

The speaker then went on to say that this passage currently inspires hope in her. I relate this to what my husband told me a few days ago: that the people of the Old Testament found their hope in the coming of Jesus. Jesus was their light even before he’d come to the Earth.

Indeed, we as believers can trust that everything will be okay in the end. Christ may not have come back yet, but he will.

Last year, when I hadn’t become a true believer yet, I predicted that everything would be okay in 2021. I based this on the fact that mentally ill people would qualify for long-term care by then, so I would be allowed to go into a care facility then. I already moved here in September of 2019, but I didn’t know at the time that I’d still have to fight a huge battle against my inner demons.

Of course, if Christ comes back in 2021, I fear he might find me in one of my bad moments, but I do hope he’ll make everything okay for me. And I hope so whenever he returns.

I’m linking up with Let’s Have Coffee.

Fighting the Depression Demon

I was in yet another crisis yesterday. When the extra staff was about to leave, I crashed and started crying. The staff felt somehow obliged to stay and, when she finally left, another staff tried to comfort me. I cried for like three hours.

Then today it seemed to start all over again. I decided to call my husband, who told me to push the depressive thoughts away. I was going to say I feel like a selfish monster for having even unconsciously made the staff stay yesterday, but my husband said that I need to push away those thoughts too.

My husband kept repeating that I’m not a monster and I need to stop those thoughts now. He said that these thoughts are destructive. I find it hard to understand, but maybe on some level I do. I mean, I feel that I’m wicked and that’s why I’m depressed and that’s why I ask for more and more help and that’s why people leave me and that’s why I’m depressed. I can see now that this is a vicious cycle. I’m not sure it isn’t true, but I remember from the little cognitive behavior therapy I took years ago that really it doesn’t matter. It’s non-functional. Or destructive even. And that’s what matters.

My husband tried to remind me that God loves me. I kept getting stuck on technicalities such as the fact that I wasn’t baptized. At first he told me: “So then get baptized if it helps you.” I can’t see how I could be baptized in this time of social distancing.

Then my husband started to tell me that I am at a crossroads and can take one step towards despair or one step towards hope each second. Maybe even if I don’t get baptized at this point, because well I can’t, I can take a number of baby steps towards hope. Towards God.

Lord, please help me take every second as it comes. Please help me choose each second to take that one step, even if it’s a snail’s step (or crawl, whatever snails do), closer to You.

Lord, thank you for bringing my husband into my life. Thank you for speaking through him and reminding me to live positively. In Jesus’ name, Amen.

Now I’m totally clueless about the supposed format of prayers, so I have no idea whether this was a proper one. I trust God hears me whether my prayer was written properly though.

Today Is Sunday, November 29

I was originally planning on writing a #WeekendCoffeeShare post, but then discovered that the linky isn’t up this week. That’s okay, since I didn’t really know what to write for it anyway. However, now I’m left with a blank screen and yet with the intention of writing an entry today.

Today was a mostly good day. I lay in bed until nearly 10AM this morning. I had been awake last night for a pretty long while pondering faith.

When I got up, I got dressed and then ate breakfast. We usually have boiled eggs on week-ends, but had eaten them all yesterday. I just had one slice of bread with peanut butter.

Then my husband called. I was in a bit of a low mood, so he recommended I get some sunshine on my face. The sun was shining beautifully here this morning. I had a walk outside.

Then I had lunch – two bowls of tomato soup. I spent the first part of the afternoon napping. After having coffee at around 2:30PM, the evening shift arrived. She took me for a walk right after handover.

I was a bit stressed about possibly needing to eat in the dining room again, but the evening staff informed the extra staff, who came at 4:30, that I would have dinner in my room. It was pretty good, although the meal company’s definition of “vegetable rice” is rice with a few tiny chunks of carrot thrown in.

I went for a walk again in the evening. At one point, I somehow tripped over my own feet and fell. I’m okay though – just a tiny scrape on my knee.

I did break my step record again this week. In fact, I reached my daily goal of 10K steps everyday this week except for Friday. Unfortunately, my sister, who is my only friend on Fitbit, got in even more steps.

When the staff were having their own meal, I listened to yet another church podcast. First United Methodist Church of Baton Rouge didn’t have their service online yet, so I chose First United Methodist Church of Austin, TX. The sermon’s theme was believing in hope. It was a very touching sermon that included several references to Holocaust victims believing in hope back then in spite of it being nowhere in sight. Of course, this year of pandemic is nothing compared to World War II, but this means we are even more required to keep hope.

After I had my evening coffee and soft drink with chips, I did get a little nervous when I found out a staff I don’t really know that well has the extra shift tomorrow evening. I’m trying to remember to stay in the present though and not to worry about things that may come.

2019: The Year in Review

Wow, can you believe 2019 is almost over yet? It was truly an eventful year. I want to do a review of the year. I originally intended on waiting till the 31st to do it, but I’m not sure I’ll have time for it then, as I’m celebrating New Year’s at my in-laws.

I had a theory when I was a teen that said life ran in cycles, by which every three years I’d find myself struggling significantly, then the next year would be one of hope, and the third year would be one of disillusionment, by the end of which I’d spiral into despair again. 2001, 2004 and 2007 were all years of despair, whereas 2002, 2005 and 2008 where years of hope. I didn’t continue to be superstitious about this past that point and honestly looking back each year was really a mixed bag. By this logic though, 2019 would have to be a year of despair. It was to begin with, but it ended on a really positive note, whereas by my teenage logic, the fall of the year of despair would be the hardest.

Well, let me say this year was extremely eventful indeed. At the end of 2018, we had just mailed out the application for long-term care funding. I started the year really hopeful by looking at a living facility and having my long-term care assessment in January. Then in February, I grew cynical. I decided everything wouldn’t be okay till 2021, as that would be the year people with lifelong psychiatric conditions would be allowed access to long-term care. I was right. My funding application got denied.

March, April and May were all largely months of waiting, as we sent out the appeal letter and my appeal was looked at. In late May, my support coordinator told me I would most likely not be granted long-term care funding this time either, but the lawyer in charge of my appeal was going to see if she could find a way to approve me anyway. She did somehow. I feel the long-term care regulations put people with multiple disabilities at a significant disadvantage. I remember writing blog posts explaining the legalities of long-term care back in like 2009 on my very first WordPress blog and I already felt the rigid care packages based on primary disability, were stupid. I don’t know how they managed to grant my appeal and even if I knew, I wouldn’t share it here.

By the time my long-term care funding was approved, my support coordinator had been informed that the care facility in Raalte with her agency had several available rooms. I started the intake process. By late August, just as I was losing hope again, I was told I would be accepted. I moved on September 23.

The past three months have been good. I feel a sense of calm, even though I still experience meltdowns. I had one tonight. Like a fellow patient on the locked unit said once, I can move around all I want, but I still need to look to myself for improving my own mental health.

When I looked at my review of 2018, I saw that my husband had been warming me up to us buying a house in his work city. I thought then that this may not happen if I go into long-term care, and indeed the house we bought isn’t in his work city. However, it’s still a house he likes. It is legally my house too, of course, which is good, in that I can move there if I ever get kicked out of long-term care. I also try to stay involved with renovation plans, but I struggle with this.

I took a look at my hopes for 2019 as I was preparing to write this review. I can be pretty satisfied with how I did on them. The only goal I didn’t meet, was to have a healthier lifestyle and lose weight. I’m doing okay on the healthier eating part, as I haven’t had binges much since coming to the care facility and make sure I don’t indulge into my every food whim. However, I don’t exercise nearly as often as I want to, though I get about as many active minutes as I did when living with my husband.

I did buy a new computer. Two, in fact, as I wasn’t happy with the Mac I bought and sold it to my mother-in-law. I am very happy with my current Windows PC though. Having a working computer again enables me to do so much more with my blog than I could when only using my phone. This helps me keep a regular blogging schedule too. Finally having found a feed reader that works in my browser, also helps. That was my only initial frustration with my current PC, as my Mac had a good feed reader and I struggled to find one for PC.

My last hope for 2019 was to stay mentally stable. I’m pretty sure I have reached this goal, as I’ve not been in serious crises at all. I’m also more than happy with how my staff handle my meltdowns or short crises as they do happen.