On power and respect

I alluded to this concept a few days ago. I want to tackle this pretty massive topic from a very personal point of view. This is not a post about wielding power. This is not a post about respecting authority. It is about allowing a person to have power over their own lives, being respected, and respecting others.

One of my biggest hurdles I’ve had to overcome since having the stroke is having to accept that I can’t do all that I used to do. I have also learned that there is still quite a bit that I can do. I am getting better each day at understanding what my limitations are. This allows me to make good decisions about how I expend my energy.

Early on in my stroke recovery decisions about what I do and how I do it were made by my carers or therapists. Once I was discharged and my carers were my husband and my mother, they also became my decision-makers. I really resented that. I knew that they had my best interests at heart but I was often separated from the decision-making process. I would hear them having conversations about me but not with me. That still happens now but far less often…and I’m grateful for that improvement.

Ultimately, my self-determination and agency was removed. I had no power in my own life. I felt like I was not respected as a person. As an adult. Having been a person who had that power previously and wielded it well enough to achieve the things I did in my career and then to have it all stripped from me was indescribable.

Just over 12 months on from my stroke, life now is a different story. I’m still trying to assert myself and am mostly successful on the occasions that I attempt that. It’s not all plain sailing. I still run into barriers when I exhibit some symptoms which appear like I’m not doing so well. It’s at these times that others step in to catch me if they think I’m going to fall (either literally or metaphorically). Sometimes they misread the situation and reach out to save me when I don’t really need it. I have a tendency at these times to be less than charitable at being treated like a baby bird that’s fallen from the nest. I don’t like having the tiny bit of power I have over myself being taken from me. I still want to be respected.

From the other side of the equation, I can see that both my husband and my mother love me dearly and want to keep me safe. I know that they do what they do from a place of love. They aren’t trying to disrespect me even though that’s how I feel when these moments happen. I also know that they are often on edge. They’ve seen what happens when it all goes wrong. They’re anticipating a catastrophe which may not actually eventuate. But they’ve also both seen it when the catastrophe does happen and it’s these moments of crisis that stay in their minds. Thinking about this now as I write, I wonder if it’s like some form of PTSD. The worst case scenario plays in their mind because they’ve already witnessed it in real life.

Here is another moment for respect to come into play. I want them to respect me and my right to make my own adult choices. They also need me to respect them and their needs. The need to not have to be within arm’s reach to catch me if I fall. The need to take a break from the stress of continual worry. The need to let off steam. The need to be human, frail and flawed.

I guess that it, really. We’re all just trying to do our best. Don’t step on each other’s toes. Respect that another person has different and sometimes competing needs. We all want to be in charge of our own destiny but that doesn’t give us the right to cut across another person’s right to determine theirs.

Spiderman’s Uncle Ben said it best…

With great power comes great responsibility.

And now for the final Musical Challenge of #blogjune 2019. Winners will be posted in a subsequent post in the coming week. I usually finish #blogjune with a song recording but I haven’t done one yet so I have nothing for what should be the final post of the month. That said, my final song in the Musical Challenge is one I’ve been wanting to record so it may pop up when I give the final result in my Post-Script Post.

By the way, there are 6 points between the current first place and the people on the bottom of the leader board.  So with 5 unanswered songs plus today’s new song, it’s literally still all up for grabs! There’s also only 1 point separating first and second place!!!! Exciting stuff!!

Song 30

It’s been a long night so I think I’ll go home
And feed my nightmares they’ve been waiting all night long

On friendship and connection

I nearly thought that after yesterday’s post, today’s would be on power and responsibility but I’m not quite ready for that. It seems that in the dying days of this year’s #blogjune I’m just hitting my stride! No, today I wish to talk about the importance of maintaining friendship and connection.

Later today we will be having some friends over for a games party. Most of these people are friends of Sean’s that he met through work and they have become my friends too. Such is the nature of our relationship – his kinda people are my kinda people. Whenever we have “blended” parties (i.e. his friends and my friends) everyone gets on pretty well because we all have so much in common. It’s probably the incestuous nature of libraries. We all mix in the same kinds of circles and have similar if not identical interests. You know…geeky, sci-fi, gaming, crafting, cosplay and Weird Al. Actually,  please comment on the blog if you are into these things or absolutely not into these things…especially if you are a librarian, library technician or library assistant.

Since having the stroke, I’ve found it hard to maintain connection with my friends anywhere except in a digital space. It was already hard to meet up with my old friends and colleagues due to the geographic distance and parenting commitments we all have. Adding disability into the equation just turned difficult into almost impossible. Yet I know they are all still there and thinking of me just as I hope they know I still think of them all. (I should say “you” not “them” as I think many of you read this blog.)

Anyway, attending social events is both enjoyable and problematic for me. As an extrovert, the enjoyment of socialising is immeasurable. However, the effort of maintaining control of my language and linguistic processing since having the stroke is actually quite difficult. So I tend to find social events simultaneously energising and draining.

It’s important to maintain that connection, though. I found that last year I didn’t leave the house very much except to do the necessary tasks. As a result, my mental health suffered terribly and I became more and more depressed and anxious. Around that time I began therapy with a neuropsychiatrist who gave me “homework” to do because this tendency to stay put and shut myself off from the world was beginning to move from Generalised Anxiety Disorder to Agoraphobia. It was only in the embryonic stages but it was evident that my withdrawal behaviours would put me at risk.

Piggy-backing yesterday’s post on adjustment and acceptance, our plans changed this morning. This afternoon’s event was due to be at another friend’s house but circumstances see those friends unwell today so we offered to step in and host. Going with the flow and adjusting our plans might once have caused me anxiety. Having people in our house might also have caused me some stress. Yet, here I am calm and actually really looking forward to being in a social setting in my own house with virtually no preparation. I’m quietly patting myself on the back for how good I feel about this situation.

One final note: I’m sorry that our friends are unwell and I wish them a speedy recovery.

Now for Musical Challenge! Leesa won yesterday’s song with the answer “Santa Monica”. She has a convincing lead and will likely win the title for Musical Challenge 2019. That said, there are still unanswered songs and the title is still up for grabs.

Song 29

But when I crawl into your arms
Everything comes tumbling down

On adjustment and acceptance

I have had to become a person who readily accepts changes. Dealing with the major life adjustment of the diagnosis of a stroke was just one. Since then my plans have all had to be written in custard. Nothing can be written in stone.

Today was another day where I had a lesson in adjustment and acceptance. I had desperately wanted to attend the local show. The Redcliffe Show is a part of my annual calendar of entertainment. I enjoy it more than the Brisbane Ekka which was one of the few things I was homesick for when I lived in Ireland. It’s major downside, however, is that it is very difficult for me to navigate around the grounds. Last year I could not attend at all. It was only a few short months since I’ve had the stroke and I was barely walking. This year I can walk a little more but I have extreme fatigue. I have a great mobility scooter but it’s more suited to shopping centres and bike paths than bumpy ground which is, today, a little damp and muddy.

I planned to get myself a 4-wheelie walker so that I could use it for stability and also have a seat to use whenever I needed a break from walking. I had all my plans in place to make the night work. Then came a spanner in the works in the form of major dental disturbance for the husband. He had a tooth removed a few days ago but it’s not settling down as it should and he’s not in a position to support me or traipse around the showgrounds for the evening.

So what do I do? Press on and push myself? I considered enlisting my mother to help me along with the little Snugglepot. That would have us be a group of an elderly woman, a disabled woman and an excitable nearly 5-year old who runs really fast and doesn’t always listen.  No. The sensible thing to do is to call it off and accept that this year is another year of Show without Fi.

I am a smart woman. I know how to make logically sound decisions. However, I’m also an emotional woman and I can often find it difficult to accept those decisions…even when I’m the one making them. I have been known to carry on like quite the pork chop. I stew on things and get upset that they didn’t go according to plan. It’s right up there as one of my worst character flaws. Today I exhibited a bit more even-tempered approach to my choices. Coupled with managing my own expectations I had to negotiate the change of plans with that nearly 5-year old. The apple hasn’t fallen far from the tree with that tendency to inflexibility. Nevertheless, we managed to talk about why things could not proceed as per the original plan and an acceptable compromise was reached.

Learning to listen to my body and also to respect the needs of my carers (Sean and Mum) has been a major development for me within the past year. I have had a bit of a mixed history when it comes to having my needs heard and respected. So being in a place where my needs get to rank as highly as anyone else’s is a new-ish thing and the power kinda got to me a bit. Now I’m pulling back and behaving a bit more reasonably. I hope.

We’re starting to morph into another topic now so I think I might put a pin in this and explore power and respect another day.

Bottom line: I am learning to adjust to fluctuations in circumstances and accept that even the best laid plans may have to be changed.

There was no Musical Challenge yesterday so here is a double-up.

Song 27

I don’t want to be your fall-back crutch anymore

Song 28

Losing love is like a window in your heart

Another Stroke Nope

I’ve had a rough few days with my stroke symptoms. My hand and my leg have been causing me pain. My hand is also quite swollen and my hypersensitivity has increased. As a result of all of this, I didn’t really feel like blogging today.

Please accept my apologies for another Stroke Nope day.

Musical Challenge will also return tomorrow.

On dignity and pride

One of the most confronting things I had to deal with when I had my stroke was my inability to take care of my personal needs. The day I had the stroke was the first day I had to put my pride to one side and accept personal and intimate help.

As parents, we think nothing of providing such care for our children when they are infants. We help them learn how to manage toileting and ablutions and consider it a great milestone when they can take care of their own bodies in this way. As children, they accept this because it’s all they have ever known. Once they have successfully navigated potty/toilet training they often (and rightly) become indignant when assistance is offered. Bed wetting or even daytime wetness are seen as “accidents”. The child feels embarrassed and ashamed when these moments happen and they are a sign that something is wrong.

It was only fitting, then, that such help should come from the person who loves me endlessly and unconditionally. My person. My husband. As the stroke symptoms persisted (unknown to be a stroke at that stage), my needs remained but hubby had to go to work and my mother took on that role of carer on the second day. She helped me in the same way she had more than 40 years earlier. By the fifth day I was in hospital and the stroke was diagnosed and now it was the time to entrust my personal care to strangers. It was hard to accept my situation when I accepted help from my husband and my mother. I can scarcely remember how I felt when I had to accept the same intimate help from people I didn’t know. So difficult a thing it was to accept that I have blocked it from my memory. I had no choice but to allow the nurses and AINs to help me when toileting and showering. I simply could not do it myself.

I felt my dignity stripped away and I was laid bare. Literally. There was nowhere to hide. Naked and helpless. Gradually, two things happened. One was that I became more physically able to attend to myself and the other was that I changed my thinking about my situation. Nobody had taken away my dignity. If anything, my various carers were respectful and they GAVE me dignity in some very undignified moments.

I’m mostly able to look after myself now when it comes to toileting and ablutions. I still need help from time to time. Sean swoops in when I call out. He shows kindness and gentleness. Any anxiety I may have felt about asking for help is long gone because of the way he treats me. I’m not sure what he feels but he makes it look like he’s just doing another mundane task. There is no embarrassment or resentment. When I have felt like my dignity is gone he was the one to give it back.

There are lots of ways that a person’s dignity, self-image and agency are diminished when they suffer a disability. We the sufferers aren’t always able to affect change in those areas. We rely on those around us to treat us with the kind of respect that allows us to find dignity in the circumstances we find ourselves.

And now for the Musical Challenge!

Yesterday’s catch-up saw some answers roll in but there are still some going begging.

Sean got Song 18 – Running to Stand Still. Eriq correctly answered Song 20 – Oh Very Young. Leesa got Song 21 – Isn’t it Time. Songs 22-25 are still all up for grabs.

Song 26

Just let your love surround her
Paint a rainbow all around her

Musical make-up

I’ve had a run of bad days recently and I haven’t really felt up to blogging all that much. I did it anyway but I drew the line at the creativity required for the Musical Challenge.

Today I’m also not feeling as strong as I would like but I’m determined not to give up on #blogjune or the Musical Challenge. So today’s post is simply the catch-up or make-up for the missed days of Musical Challenge.

Let’s begin with the songs that have already been put out there but are still unanswered:

Song 18

You got to cry without weeping
Talk without speaking
Scream without raising your voice

Song 20

You’re only dancin’ on this earth for a short while

Song 21

I just can’t find the answers
To the questions that keep going through my mind

And now for the new ones:

Song 22

There was a time, I used to look into my father’s eyes
In a happy home, I was a king I had a golden throne

Song 23

You’d have me down, down, down, down on my knees
Now wouldn’t you?

Song 24

At night the stars put on a show for free
And, darling, you can share it all with me

Song 25

I don’t know where I belong
I don’t know where I went wrong

 

 

Fog

I’m not well right now. I’ve had a big day and my head is doing the thing it does. Everything is foggy. I couldn’t walk tonight so Sean has apparently brought me to bed and put me in my pyjamas. I don’t remember that happening.

I thought I’d blog now to save myself the pressure of it later. I’m half lying down and mostly touch typing. I’ve been typing since childhood so this is a sense memory at this point. Actually, I have closed my eyes for most of this so I hope I don’t make too many mistakes.

Snugglepot is aware of my situation. I hear her giggling away at the TV. I can hear Sean making dinner. I think I’ll be eating in bed again. I’m a bit of a management issue to get me out to the dining table when I’m like this.

I’m foggy in the head and I’m not entirely sure what day it is today or where I am exactly. I feel safe and I feel loved.

Something happens now.

Nope. Not today.