Grief: Dealing With Loss (Of Any Kind) #AtoZChallenge

Posted on by Astrid

Hi everyone. I’ve been struggling a lot lately again and, as a result, today am particularly late writing my #AtoZChallenge contribution. Today’s letter is G and I want to talk about grief.

Grief can refer to a person’s reaction to losing a loved one to death. That’s the most heard of definition anyway. Grief for a loved one who has passed away can last very long and, in fact, isn’t considered abnormal for the first year. If a person still experiences significantly distressing symptoms of grief more than a year after their loved one has passed, they may be diagnosable with prolonged grief disorder (also known as complicated grief).

Grief, of course, can also refer to the distressing symptoms experienced after losing a beloved pet. It doesn’t matter in this respect that the pet isn’t human; grief can still be experienced very deeply. I mention this because, like I said on Saturday, my spouse and I lost our cat Barry that day.

Grief, however, can also relate to distressing symptoms experienced after a loss that isn’t due to death. For example, heartbreak is in a way grief too. So are the distressing symptoms I experienced when losing my sight and, later on, many acquired skills due to autistic burnout.

Most people will be familiar with the five stages of grief described by Elisabeth Kübler-Ross. These stages are denial, anger, bargaining, depression and acceptance. In reality though, many people will not necessarily experience these stages in order and they may fall back due to stress. Still, many of the symptoms associated with the earlier stages in this model, made it into the criteria for prolonged grief disorder. Symptoms of prolonged grief include:


  • Identity disruption (eg. feeling as though a part of oneself has died).

  • Marked sense of disbelief about the death.

  • Avoidance of reminders that the person is dead.

  • Intense emotional pain (eg. anger, bitterness, sorrow) related to the death.

  • Difficulty reintegrating, such as problems engaging with friends, pursuing interests or planning for the future.

  • Emotional numbness (absence or marked reduction of emotional experience).

  • Feeling that life is meaningless.

  • Intense loneliness: feeling alone or detached from others.

Of course, people can experience many of these symptoms without having lost a loved one to death. Emotional numbness and avoidance of triggers, after all, are also symptoms of post-traumatic stress disorder. Many other symptoms occur in people who were traumatized in some way too. As an example, I relate to all symptoms when the aspect of bereavement is removed, and not just since Barry was put down. I don’t know whether that makes sense, but oh well.

Trust and Trustworthiness

Posted on by Astrid

Hi all. Today’s topic for Tranquil Thursday is trust. This topic is relevant to my life in so many ways.

Maggie starts her post with a quote which says that, for there to be betrayal, there has to have been trust first. This hits home quite hard. As someone who was at least partly rejected by my parents from infancy on, I am not sure I even remember what it is like to have had that basic sense of trust babies need. It may be for this reason that I never felt particularly affected when family members passed away. Even with my maternal grandmother, with whom I was quite close, I never even felt a sense of grief.

Then again, I did feel this sense of grief when my former assigned staff back at my old care home left her job at the care agency in July of 2022. She was the first person I’d ever fully trusted in my entire life. There were others at that care home whom I trusted almost as much.

I am pretty sure I’ll never trust a professional ever again. Not because of this staff, mind you, but because of the way the staff here at my current care home handle the relationship they have with us residents. Several staff have left their jobs here without ever saying a word and then I didn’t find out until after they’d left. Yesterday a staff I’d repeatedly talked about this to, left as well and I only found out, from his colleague, at the beginning of his last shift.

You may be wondering where my spouse is in all this. Well, I do trust my spouse not to betray me – in the sense of leaving me, mistreating me, or the like -, but it’s only been over the past few months that I’ve been able to truly be myself around my partner.

I am, generally speaking, a very distrustful person. When someone enters my life, their first impression has to be really good for me to have a positive idea about them and, when they mess up, I feel very easily betrayed.

With respect to being trustworthy myself, I’m not sure. I don’t think I am very trustworthy, but it isn’t intentionally. I mean, often I struggle with distinguishing between safe and unsafe people and in this sense end up putting myself at risk as well as potentially betraying my spouse. I remember one time a fellow patient at the psych hospital offering to hold my hand when guiding me and he commented about our spouses not liking this if they saw it. I up till that point was cool with this man as a peer and I initially didn’t see the signs that I was firstly betraying my spouse and secondly also possibly being groomed.

In addition, I can be quite impulsive and dysregulated. I’ve told my spouse that I’m leaving too many times to count. I understand my spouse sees this as significant betrayal too. I know – and my spouse knows this too – that we are meant for each other, but still it probably comes across quite harsh.

Visiting Extended Family

Posted on by Astrid

Hi all. Today’s topic for Throwback Thursday is contact with extended family and especially the coming together and leaving.

When I was a child, my extended family lived all over the country. For reference, I live in the Netherlands, so “all over the country” means anyone was still within a three-hour driving distance. However, we didn’t visit with extended family very often. I rarely saw my aunts and uncles except at my grandparents’ house. As for those, we visited my maternal grandparents several times a year even though they lived closer by where I lived as a young child than my paternal grandmother. My paternal grandmother, we saw most often and had sleepovers with each summer and sometimes at Christmas too.

I don’t think we had any rituals for the coming together. For leaving, my paternal grandmother wanted to give everyone a kiss on the cheek. I didn’t mind and hardly even noticed it until she wanted to give my spouse a kiss when we last saw her in 2016. My spouse politely refused.

Like I said, my sister and I had regular sleepovers at my paternal grandmother’s house. We always slept on thick matresses on the floor, but they felt pretty comfy nonetheless. My grandmother made her own quilts, so she probably lay one of them over us as a duvet.

As for my paternal grandfather, I only ever visited him for day trips, but my sister once went on a week-long trip on my grandfather’s powerboat with him. They actually slept on board.

I can’t remember whether I found saying goodbye to extended family after a visit was over difficult or not. It probably depended on how well I liked said family member.

That brings me to the question of which family member I would like to bring back to life for a visit. I’d certainly choose my paternal grandmother. I have talked positively about her many times before. She declined a lot both cognitively and physically over the last few years of her life and I didn’t feel comfortable visiting her anymore during the last eighteen months she lived. Even so, I know she remained resilient up till the end and, when she could no longer take it, I know she had seriously exhausted all possibilities of remaining optimistic. She died during palliative sedation on May 12, 2018. If I could bring her back to life for a visit, I’d tell her I’m still happily married. For those who don’t know, my paternal grandmother was my official witness during the wedding ceremony.

Final Goodbyes

Posted on by Astrid

Yesterday, the fellow client who passed away was temporarily moved from the morgue into her room in the care home. I went to have a quick look yesterday evening. This morning, since I had finished my polymer clay butterfly and flower, I went back into her room and set them at her remembrance table next to her coffin. My assigned home staff was with me and asked me whether I wanted to touch her coffin, the things she had with her and even her hand. I did. Her hand was cold, which was the final reminder I needed that she’s really dead.

This afternoon, we went back into her room to pick a rose from her remembrance bouquet. We then went outside and stood in a circle with all other clients and staff who were close to this client and the family. Everyone laid a rose on the coffin. The client’s brother and our support coordinator spoke a few words and then the coffin was put into the funeral car and driven away. My assigned staff cried a few tears. I did feel sad too, but I couldn’t cry.

This is the first time I’ve ever been this close to a deceased person. I mean literally, as in touching her hand. When my maternal grandfather had died in 1995, I did pay him a quick visit at the funeral center, but was only able to have a quick look and with how little vision I had back then, I probably could hardly make out what he looked like. With my other grandparents, I didn’t ever get to see them while in their coffins. I had originally thought I wouldn’t benefit from visiting this client in her room because I couldn’t see her, but I actually did benefit. I was able to say my final goodbyes. Now I know she’s really gone.

Written for E.M.’s Random Word Prompt #7: “Remembrance”.

A Few Really Intense Days

Posted on by Astrid

Last Thursday was a weird day. I had to have my mammogram at 11:45AM at the hospital in the nearest city, which is half an hour’s drive away. We arrived about fifteen minutes early, which was good, since I still needed to get an ID label. Normally, the hospital give you an ID card with your first visit, but the receptionist said I should already have one since my ID was in their system. It probably was from when I had my abdominal X-ray at the outpatient clinic here in town, where apparently they don’t do ID cards. Oh well, he printed off a label and sent me on my way.

The mammogram people were running a bit late, so I got a little stressed. As it turned out, the person doing my mammogram was also a guy, which made me feel slightly uncomfortable. I tried to reassure myself that it’s his job. The mammogram was painful but thankfully it was over with quickly and I knew that it being painful said nothing about possible results.

In the evening, a male I initially didn’t recognize was in the care home. As it turned out, he was our GP. I was already distresssed from my schedule going to pieces due to the mammogram. It was getting even worse, because it turned out a fellow client had to go to the hospital. She had Down Syndrome with severe heart complications and the doctor suspected her heart was acting up again.

Later, it turned out she had RSV, a type of pneumonia that normally only affects babies and small children. She was tested for COVID too but was negative. As she was moved from cardiac care to the lung unit, she seemed to improve over Friday and Saturday, but wouldn’t be discharged until Monday as there are no doctors to do that over the weekend.

Thursday night, I myself started experiencing nausea and bad stomach pain and could hardly sleep. I vomited a few times in the morning, then was exhausted and lay in bed most of the late morning and early afternoon Friday. Thankfully, by Saturday, most of my symptoms were gone.

Then on Sunday morning, I got the news that the fellow client who’d gone into hospital Thursday evening, had passed away after all. My first thought was: “This won’t affect staffing, will it?” I quickly silenced those thoughts, knowing they are selfish. When the manager came by to support the staff, she did pay a quick visit to my room though and I asked her whether the vacant room would be filled quickly now. She reassured me that the staff and clients will have time to process this loss first.

I have been busy all of yesterday evening and today thinking about how to make something for the client out of polymer clay to go with her to the funeral. Yesterday, I initially made a butterfly using a mold, but I did it all wrong and it turned out rather rubbish. Then I decided to create a multicolor flower. However, one of the staff who knows the family’s wishes about the funeral etc., told me a butterfly would be especially fitting. So I stressed all day about how to make a butterfly using my rather inflexible mold. I might’ve found a way. My nurse practitioner, with whom I had an appointment this morning, did reassure me that I am well-intentioned regardless and that’s what matters.

This afternoon, I got the results of the mammogram. Thankfully, there are no abnormalities! At least that’s something to be happy about.

#WeekendCoffeeShare (September 4, 2021)

Posted on by Astrid

Oh my, it’s September already! I at first was going to type “July” in this post’s title, then thought that it was August, only to realize that month too has passed. The weather is still pretty nice for late summer/early fall: sunny and about 20°C.

Today, I’m joining #WeekendCoffeeShare. I already had all my coffee for the day, so a soft drink or water will have to do. Let’s have a drink and let’s catch up.

If we were having coffee, I’d share that this week has been a true rollercoaster emotionally. It started with my vision screening by the blindness agency. I really want to share more about my feelings of grief and denial about having lost all my vision. In fact, I still always want to put in a caveat about that tiny bit of light perception I still have left whenever I’m saying I’m now totally blind. But I guess that’s what I am: totally blind.

Then again, I don’t want to wallow in my sadness and would quickly move on to demonstrate VoiceOver Recognition and celebrate the powers of technology.

If we were having coffee, I’d also share that the day center is reopening on Monday after eighteen months of being more or less closed due to COVID. My day activities will largely remain in the home with my own one-on-one staff though.

That being said, I did hyperfocus a lot on the details of my activity program and the times staff aren’t directly available for me. This caused some major distress, but I eventually managed to put things into perspective.

If we were having coffee, I would tell you that I finally surpassed my Mom with respect to step count in the Fitbit app. For a while, I myself had been last among my Fitbit friends. I however did get in over 10K steps two days this past week. That’s a big win, considering I struggled to even get to 5K most days last week.

If we were having coffee, I would vent my frustration about my pasta machine, which I use for polymer clay, not working correctly. The thing I use to attach it to the table, won’t work. Thankfully though, the staff who gave the machine to me has a son who may be able to fix it.

If we were having coffee, lastly I would tell you that I’ve been doing a lot of inner work lately relating to my life as a dissociative (multiple personality) system. After some conversations with my assigned home staff, I finally decided to do a system mapping again. Like I mentioned on Thursday, I used to have a list of all of us here on the blog, but removed that as it was less relevant. My staff though do find it useful.

I also downloaded an app called Simply Plural, in which systems can keep track of who’s “in front” (the alter you see on the outside) and can do system polls on decisions too. I will probably write the developer about some bugs in its usability with VoiceOver and some suggestions, but so far, it seems quite cool.

I also finally decided to download some more books exploring trauma and stuff from Bookshare. I might explore the subject more, be it in my personal journal or here.

How have you been?

Grief

Posted on by Astrid

Today’s Five Minute Friday prompt is Grief. When I first saw it, I knew I just had to write on it, but I didn’t know what to write. In a way, I still don’t know. But let me write anyway.

I have been close to clinically depressed over the past few weeks. I don’t know whether this is grief for something I have lost. Perhaps my old, functional self.

Then again, that functional self was a façade. A mask. Layers upon layers of masks formed within those early years of my life, when I still functioned. On the surface, that is.

And here I am, in a care facility, waiting for the manager and behavior specialist and the funding authority to figure out if I can get one-on-one support. And now I grieve the loss of that façade. I am intensely sad. I worry that if I am truly myself, if I peel off all the layers and layers of masks, an intensely wicked, horrible monster will remain. I can almost literally picture the monster in my mind’s eye.

Everytime I think I’ve found the real, authentic me, and it’s a good thing, it turns out to be yet another alter. I wonder what remains if they all go. Will the intensely wicked, horrible inside of me seep through to the outside world?

I am not very religious, but I do believe in God. Especially in these hard times, I pray. I pray that God will help me remove the layers and layers of masks I’ve put up over the years. I however also pray that, beneath them all, the monster will turn out to be some kind of prince(ss) from Beauty and the Beast or whatever. At least not as wicked as I see it as.

Okay, this turned out very different than I had imagined. This piece does reflect my innermost thoughts. For those who haven’t read my previous posts, I do not see my inner monster as some kind of universal thing, like original sin. In fact, I am convinced that most people are both good and bad. The wickedness applies only to myself. And yes, I know I’m not some type of criminal, but I still see myself as intensely bad.